After much thought, I have decided to return to the website where I first started my journal four years ago.  Besides losing most of the dates in my journal, I’ve been having increasing difficulties accessing the website to do my weekly journal. 

So after today, my journal can be found at:

http://alzheimer-journey.blogspot.com/

Now I just have to try and learn how to include pictures at some point!

I’m rather late with this week’s musings.  Our Christmas activities started off with a lovely evening of music, food and gift exchange here at our senior’s apartment last night.  The music was great, and there was enough finger food to feed an army. 

I was approached by our local Alzheimer’s Coordinator to see if I might be interested in being one of the keynote speakers at this year’s Changing Melody Forum.  I was delighted to be able to accept, and have been working on my presentation.  This year’s forum is in Kingston in April of next year.  No doubt I will be writing more about this as the event gets closer.

I’m in a quandary about what to do with my Journal.  The website I’ve been using for four years is having some difficulties…and somehow have managed to lose all the dates in my journal entries prior to June of this year.  Fortunately I have kept back-ups myself, and will be able to retrieve most of the dates.  However, that task would take hours and hours of work, and use up a whole bunch of brain power.  So before I do that I need to investigate other options of where to post my Journal, and the other information pages I’ve gathered.  I will definitely keep you posted.

December 1^st and our first day of snow.  Just enough to make things white, and the roads slushy.  I’ll wait several hours before going for my walk…..I don’t have any skis for my walker!

I’m feeling a tad concerned about my inability to converse normally with people I meet in public.  I’m OK with  “Hi…how are you today?”.  I can come back quickly with a smile and “Fine thanks.  How are you?”  But yesterday a lady said “Hi there.  We don’t see you around very much.  What have you been up to?”  My mind went absolutely blank and I started to stammer and stutter.  I came out with “We’ve been having picnics on the beach.”

I seem to do fairly well just putting my thoughts forward in a conversation, but the roadblock seems to be when I’m asked a specific question.  It’s almost like I don’t have the right CUE card and have to go searching in the compartments in my head for the correct answers. 

Sometimes I think life would be simpler if I just had a card to hand out to folks:

LARYNGITIS   …..  CAN’T TALK NOW

Our No Smoking is going very well.  I think one of the reasons is we’ve been using the Nicotine Inhalers.  The package comes with 7 sleeves each with 7 cartridges, which is supposed to last one week.  I’m down to one cartridge a day, so I doubt I’m still craving the nicotine.  I think its more something to put into my mouth which isn’t fattening! 

I’m having no problems with my hips, as long as I don’t have to do stairs.  I’m OK here at our apartment, of course, as we have an elevator, and we just try to avoid any situations with stairs.  And if I don’t spend too much time on my feet without using my walker, I actually can get a good night’s sleep without burning muscles. 

It’s nice to finally be getting this stuff all figured out.  Now I’m working on how to control my frequent emotional outbursts.  Either that or get a closet Jim can lock me in!

I just received this article in an email from our friend Dave Fost from Edmonton.  We met Dave in Toronto several years ago.

ALZHERISM:

(Pronounced…Alz-er-is-m)

  Sometimes how we feel isn’t always socially acceptable. When you have Alzheimers this is more often the case. Such as: “I don’t want to see the grandkids, I just want to watch TV” or “I don’t want to go out for dinner, I want to stay home”. Sometimes this upsets the plans of those who might not understand our situation. This is when we could use the word.

(Alz-er-is-m).

This is derived from the root of “Alzheimer”. It can be used to avoid upcoming frustration or socially awkward situations. Such as: “I don’t want to see the grandkids, I seem to be coming down with   Alz-er-is-m)  or “I am having a bout of (Alz-er-is-m), so I don’t want to have coffee with Earl today”. Alzherism can cover it all for us who have the disease…like you and me. It is IMPORTANT to have as much fun as we can in this wonderful life. Well, as long as it is legal!

(Dave Fost, for Alzheimer Societies, Nov.15, 2009)

ADENDUM: My older daughter read this above and emailed me this comment "Dad, this is a word I can get to use also.  My dad is driving me to Alzherism!"

I’ve just added a new page on my website entitled Early Onset AD.  The article I have there is from the Cleveland Clinic Foundation.  One of the interesting things I noted in the article was “A condition called myoclonus – muscle twitching and spasm – is more commonly seen in early-onset Alzheimers disease than in late-onset Alzheimers disease."  I’ve never seen this mentioned in any of my research before this.  My neurologist must not have seen that either, as she has no idea why I’m having muscle twitching and spasms in my legs!

I’ve also been doing research on the burning pain I have in my hips, especially at night time.  I have always assumed it was arthritis, since that runs in the family.  However, now I’m thinking it is probably bursitis.  One of the things mentioned in the articles I’ve been reading says to avoid using stairs.  So I’ve been trying that, and have indeed found that on days I don’t do any stairs, I’m not awake at night with hip pain, even though I’m walking one or two miles a day, on my shopping excursions to town.  

Happy Birthday Jim.  My sweetheart turned 62 today…he keeps trying to catch up to me!  Too bad…I really like having a young thing for my spouse!

We drove 3 hours to Ottawa  yesterday and picked up Jim’s Mom …then back to Belleville where Jim’s sister  and brother Don met us to take Mom back to Toronto (after a delicious Chinese Buffet, of course).  We had a lovely day and the traveling was excellent.

However, I’ve discovered it takes a day to recuperate.  I couldn’t get my brain together enough today to play any of my pogo games.

Oh well…I have another night to rest my brain…and I’ll be back at my brain exercise tomorrow in POGO. 

Saturday we drove up to a family gathering near Ottawa at one of Jim’s brothers.  We had a lovely afternoon and evening visiting with everyone.  I made frequent trips outside and to the washroom for brain breaks, which worked well.  Jim and I spent a quiet half hour out in Doug’s cozy little trailer overlooking his pond, and just about fell asleep!

I’m slowly getting back into playing my pogo games.  I can play a game of canasta, or a round of Trivial Pursuit, but then I have to quit for awhile, and let the fog clear.  I’m really hoping things improve, and I get back to being able to spend hours with my brain exercises.  Otherwise, I’m just going to have to spend more time wandering around town for my “Retail Therapy”, which they say is also good brain exercise! 

I’m sitting here at our summer trailer, while Jim is finishing off some of his fall chores.  It’s not too bad with the sun streaming in the windows, and my two electric heaters running full blast!  Jim was very adventurous earlier today and had his last kayak ride of the year.  He said it was wonderful.

I’m getting into the swing of things with our ‘city living’….and have discovered the joys of taking myself off shopping.  All my favorite stores are just a few blocks away, and I’m quite enjoying the feeling of independence, just me and my little walker!  I must admit, after an hour of wandering around my head is feeling very confused, and I’m quite anxious to get safely back to our apartment.  That’s OK too…..I can’t spend too much money in an hour!   

HAPPY THANKSGIVING

We enjoyed a lovely family gathering yesterday at the Chinese Buffet.  We were all commenting on how well that works out for us….coming from 3 areas of Ontario to a central meeting spot, and no one having to spend hours preparing the meal, and then the clean up after!  We were able to spend two hours just eating and visiting with two sons and their families.   

I’m finally back to 10 mg of Aricept and hope to be back to my normal self soon.  I have missed playing my pogo games all day…..my canasta is definitely getting rusty.  I’m still struggling with conversations, but hopefully that will clear up as well. 

Seems to me I remember saying a year ago….DON’T MESS WITH THE MEDICATIONS!!!

I wanted to do an update to let you know I’m alive and well.  I’ve tried to write a journal entry numerous times, but ended up totally frustrated as the words wouldn’t come to me.

Well, starting week four of our no smoking campaign, and Jim hasn’t dumped me off at our winter home yet, so guess I’m not being too bad.  We both agree that this time round seems much harder than any of the other times we have quit.  Must have something to do with being OLD and we just forget how hard it was in the past.

We’re still watching to see if the lack of Aricept in my system is resulting in any noticeable changes, brain wise or neuropathy wise. 

This was an interesting study by Dr. Charles B. Hall, Ph.D., Professor of Epidemiology & Population Health at the Albert Einstein College of Medicine. “The key findings of the study are that persons who developed Alzheimer's disease and engaged in cognitively stimulating leisure activities such as reading, writing or crossword puzzles, had their memory decline delayed as compared to those who didn't. The more activity, the longer the delay.”   You can watch the video here:  http://www.alzheimersweekly.com/Prevention/dr-charles-hall-the-more-activity-the-longer-the-delay-a588.html

So looks like I’m on the right track, spending eight to ten hours a day on my computer!  

September 1^st, and I can’t even imagine where our summer went!  September 22^nd is the first day of fall…Yikes! 

I’ve weaned myself off the Aricept….and we’re one week into no smoking.  Too bad both these major changes are happening at the same time…..but so far my head seems to be screwed on right. 

My research is showing that the depression I’m experiencing is very common when quitting smoking, and more so for people who were already dealing with some depression.  I had increased my Vitamin B50 a year ago to B100, to deal with the depression I was experiencing.  My research is showing it is quite safe to start taking B100 twice a day now.

I told Jim if I start going crazy on him like I did when we tried to quit smoking last spring, he’s to deposit me at our winter apartment and forget about me till I get over it!  

That was a birthday weekend to remember.   Sandy and Melissa just bought a huge 5 bedroom house and 28 of us tried to fill every corner of it!  Three of our sons and families, my brother and sister and spouses, and Jim’s Mom, sister and a brother fit in perfectly!  Their magnificent deck and bar is bigger than our apartment I think!

Also got great news back from the CAT scan….seems the xray had two overlapping shadows, which the CAT scan could identify as just that, and not a nodule.  That was a great relief for sure.  Unfortunately, the CAT scan also revealed the start of emphysema, so we’re about to resort to our nicotine patches and inhalers, and again try to become non-smokers.  Picturing myself walking around with an oxygen tank is a great incentive to make it work this time!

HAPPY BIRTHDAY RALPH

Ralph was my birthday present 35 years ago tomorrow……I wish I had a picture of him at 7 lbs 9 oz.  tee hee

I’m looking forward to our Birthday Bash on Saturday at Sandy and Melissa’s….I think there will be 25 of us this year!  That’s quite a bash, eh?

Tomorrow, for my actual 65^th birthday, Jim and I are going to the Panda Garden Chinese Buffet in Kingston.  We have to make a stop on the way for me to have a cat scan at the BellevilleHospital.  They want to take a closer look at the nodule they saw on my lung a few weeks ago in an xray.  From what I have read, the cat scan will likely show it is a nodule of fat, and benign…..heck….everything else on my body is fat, so it seems likely that’s what this nodule is….right?  

On Wednesday, Jim and I decided to slowly wean me off Aricept…and see if the peripheral neuropathy goes away.  We figure we’ll know soon enough if the confusion in my head is getting any worse, in which case we’ll start it up again.  It would be so nice not to have the burning legs and to get rid of the bowel and bladder problems.

Lots of news lately about Axona…a different approach to alzheimers.  It’s a powder that you mix in water and drink every morning, and is supposed to help with the confusion, etc.  Since it is being marketed as a medical food, it didn’t have to go through the FDA.  At this point it is only available by prescription in the US.  You can read all about it here:

http://www.tangledneuron.info/the_tangled_neuron/2009/06/axona-a-different-approach-to-alzheimers.html

We are extremely fortunate in Canada to have a great medical system, with everything but drugs covered.  But there is a downside to this….long waiting periods for anything. 

Two weeks ago I was in emergency about my stomach problems.  Nine days later the doctor’s office called to say radiology had seen something on one of the xrays, and “it was probably nothing”, but they wanted more pictures.  Now I’m still waiting for the appointment for xray.  And you know its going to be a couple of weeks after the xray that I hear anything back.  This is probably why Canadians seem so laid back…it’s the only way we can cope with our medical system!

We’ve known for years that when you go on antibiotics you also need to take acidophilus to keep the good bacteria alive in your stomach.  I’m finally getting the yeast infection under control that was a side effect of the antibiotics, and the diarrhea is but a bad memory!   I sure hope someone reminds me next time I’m on antibiotics to start taking the acidophilus right away, and I just might squeeze through unscathed!

I was lying in bed in the middle of the night with burning legs and burning tummy, wondering if my stomach problems could in any way be related to peripheral neuropathy.  So in the morning when I got up, I started searching.  And lo and behold I found that autonomic neuropathy is a form of peripheral neuropathy that affects the bladder and bowel.  With the bowel, it makes it harder to move food during digestion (decreased gastric motility). 

Now there are a few causes of autonomic neuropathy, Diabetes, Parkinsons, and….the use of anticholinergic medications…..my Aricept! 

Treatments for reduced gastric motility include:

• Medications that increase gastric motility (such as Reglan)
• Sleeping with the head raised
• Small, frequent meals

Now how many small meals are we talking here?  Am I going to get really fluffy?

We’ve had a busy few days getting Jim’s Mom packed up and ready to move to Scarlett Heights, a luxury retirement home in Toronto.  This has been in the works for some time, but now that Dad is gone, it’s more important than ever that Mom gets moved to a place where her every need can be met.   Check it out at:   http://www.chartwellreit.ca/home_locations/select-scarlett_heights.htm

I’ve spent a very painful weekend with what the doctors think is probably diverticulitis.  Hopefully the antibiotics will take care of things quickly, because we’re planning on spending Thursday and Friday back in Toronto…packing up more stuff at Mom’s house, and spending time with Mom in her new home.  

Some days I wake up with heightened sensitivity.  It seems like the filters in my brain are taking the day off, so the sights and sounds are full blown.  Wearing my headphones helps with the noise, except the ringing from my tinnitus….that’s still screeching away.  I keep the blinds and drapes closed, which helps with the light.

My doctor did confirm that sometimes the filters aren’t working, and I’ve been trying to ascertain what seems to trigger this.  I’ve concluded that when my brain has done all the processing it can handle, it starts to go into ‘shut down’ mode, essentially shutting down the filters in the process.

So I figure when I wake up and the filters aren’t working, it’s probably because I spent a restless night, with the ongoing leg spasms and burning.  Throw in some wild and wonderful dreams, and you have the recipe for a total wipe out of a day!  Oh well, there’s always tomorrow.

The Thought for the Day from Alzheimers Weekly seemed quite appropriate:  Every evening I turn my worries over to God.  He’s going to be up all night anyways.

I’m thinking I may need to start turning them over during the day as well.  Jim and I are wondering if my increased brain fog these past few months may be the result of  the various stresses we’ve been going through with family matters.  The more I try to work out solutions the more my brain feels like it is getting huge and is going to burst out of my head. Researchers say that stress hormones can rapidly accelerate the formation of the brain lesions found in alzheimers.

I guess my other solution would be to pitch a tent out in the woods and go into hibernation ….as long as you call me when dinners ready!

Goodbye Dad

Jim’s father, Don McKinlay passed away suddenly yesterday at the age of 86. 

Don was diagnosed two years ago with alzheimers and with the help of the meds was doing remarkably well.  He will be missed by his family and friends.

No farewell words were spoken,
No time to say goodbye,
You were gone before we knew it,
And only God knows why.

If love could have saved you,
you would have lived forever.

This was definitely one of those ‘crazy brain’ weeks.  Most days had more ‘fog’ than clear head for some reason.  I was still able to compile my Songbook on my mini computer in between the foggy patches.  I have over forty of my favorites now, and will keep adding to them, as I think of them.

I fully expect to be back to my normal self anytime this week.  We’re in the full moon phase right now, and I figure my system goes haywire when we have a full moon!  Just another theory I have, but this one is solidly based on well-established superstitions!

For years my friend Jane and I played our accordions together whenever we got the chance.Then our campground owners started having music fests nearly every weekend.Usually the music fests had about a dozen people with various instruments and lots of singing and just plain having fun.About two years ago I realized I couldn’t handle this much activity any longer, and gave my accordion away.

With the meds and lots of brain exercise, I’m back to the point where I can again enjoy music.We found a lovely accordion which we picked up on Saturday, and I was able to join in the first music fest at the campground.I took several breaks, just to clear the fog, and totally enjoyed myself for over two hours.By that time, things were becoming rather jumbled in my head, and I knew it was time to quit.

I’m really delighted to have this activity back in my life.Our new senior’s apartment where we’ll live for the winter months has a music fest every Friday morning, and I really would have been feeling sad to miss out on that.

And my new brain exercise?Compiling a Song Book on my mini computer of lyrics and midis of all the old songs that we like to play!

I got an early Birthday present this weekend….an Acer 10” Notebook and a wee little mouse on an extendible leash! They will fit in my purse, and go with me everywhere!

We spent the weekend downloading everything I wanted off my 17” laptop, as well as downloading the trial version of Microsoft Streets and Trips software.I really wished I’d had this program last week when we were driving all over Kingston and Belleville trying to find the health food stores to check out coconut oil prices.I had the addresses written down, but what a headache trying to find them all in cities we’re not really that familiar with.

Jim taught me how to ride his Toro lawnmower this week!We were both amazed at how well it went, and it didn’t seem to make my brain go crazy…or any crazier at least.The campground owner let me practice on his big field and in the maze…..so five acres later, I think I have it down pat!Mind you, I let Jim dance around the trees. I figured it would be easier on the trees and the mower if I let him do it.Jim keeps suggesting he should teach me to use the trimmer, so he can get back to enjoying his Toro!

Well, we’ve checked into various health food stores and drug stores here and in Kingston, and no MCT oil.I can purchase it online…..at a cost of about $34 a litre.So I think at this point we’re going to forget trying it out……and just stick with the coconut oil.We have found it for $6.75 for 500ml, and we’ll keep trying to find a cheaper supply.Jim is quite enjoying it, and it certainly is much healthier than our margarine!

Bill, a person I had met in chat last year, emailed me and asked if I was still taking coconut oil.He has his mother on both coconut oil and MCT….that they worked better together.So I went to the links Bill provided me with, did some more reading, and am now back on coconut oil, and looking for MCT oil in our area. You can read some of it below, and also check out the links.

Dr. Mary Newport has done much research on how to help her husband Steve, and writes in her blog how the coconut oil and MCT oil have changed his life.He has regained his personality!

http://coconutketones.blogspot.com/

“…AD and the concept of the "diabetes of the brain" aspect of this disease, the problem of decreased glucose uptake that results in death of the neurons, which appears to happen over decades before symptoms are obvious. Also, this same process happens in other neurodegenerative diseases, including Parkinson's, Huntington's and Lou Gehrig's (ALS.) Ketones serve as an alternative fuel for neurons and other brain cells (and all cells.) The "inventor" Dr. Samuel Henderson, a biochemist, had the insight to recognize that mild ketosis produced by eating medium chain triglycerides could provide ketones to the neurons and potentially improve cognitive function. Medium chain triglycerides are converted directly by the liver to ketones. These have actually been available for decades, bottled as MCT Oil and can be purchased in health food stores and online.”

Steve currently takes a mixture of MCT oil 4 parts to 3 parts coconut oil and is getting 8 tablespoons a day of this mixture. We recently increased from 35 to 40 ml (7 to 8 teaspoons each meal) three times a day.

Another interesting website is:

http://www.perpetualcommotion.com/a/Patricias_Protocol.html

Jim and I have moved most of our belongings from the storage locker into our new apartment.One more trip and we should be done.I’m really not sure why, but this kind of activity does a real number on my brain.It’s like my brain shifts into overdrive, and I end up in quite a frenzy.I suppose it’s all the decision making…..like can I lift this article, where should I put it in the van, and so on.By the time we finish one van full of loading and unloading, I am totally wiped out.It will be so nice when we’re all done and we can just enjoy our cozy apartment every time we’re in town during the summer.

In between rain showers Jim and I managed to paint out deck.I was the Roller person, and Jim followed behind with his brush….doing the cracks…..so guess he was the Crackpot?

That week absolutely flew by.I spent several days sanding the railing on our 30 foot deck, before we proceeded with the priming and painting.Those 65 spindles felt like 650 by the time I reached the last one.I had to take several ‘brain breaks’….that eye/hand coordination stuff really fogs up my head.Now Jim will scrape and sand the deck, ready for its new coat of paint, and we’ll be good for another year or two.

Jim’s been busy with lawns and trimming up our trees.We even got out for a kayak ride, and Jim did a 25 mile bike ride.Haven’t been in for a swim yet….but according to the marine weather site, the water temperature is only 10C (50F) ….so I don’t think we’ll be rushing down for our first swim of the year any time soon!

HAPPY VICTORIA DAY CANADA

Jim’s Toy Barn, as our neighbour calls it, is pretty well complete.A second coat of white on the trim boards…but no rush on that.Considering Jim is not a carpenter, he sure did an amazing job!

We’re trying to figure what is going on with me……I have incredible energy…and like the Energizer Rabbit, I just keep going and going and going.I’ve been cleaning, baking, doing laundry, helping Jim move the old shed to a neighbours, walking the neighbour’s dog, etc.The only thing we can think of is the 2000mg of vitamin B12 I’ve been taking.I told Jim years ago I would have this same spurt of energy days before giving birth to one of the boys! Lol Now you don’t suppose………

Another lovely Mother’s Day weekend has come and gone.Jim and I spent Saturday in Toronto with his Mom and family.On Sunday three of our five sons and their families joined us at our Chinese Buffet in Belleville for a scrumptious feast.It is such fun to see everyone on these special occasions.I’m so amazed how well I’m handling all the visiting.I can keep myself more or less focused for about 2 hours now.

Jim seems to be enjoying his ‘dancing’ around on his Toro lawnmower.He’s even got his ‘amazing maze’ mowed again.

He keeps thinking he might soon be able to get the second coat of pain on his little shed, but those pesky little flies really want to hang around this year.Oh well, we have a glorious summer ahead of us, with lots of time for painting.

A friend from the chatroom lost his wife last month to Dementia, and has now started a blog to help others on this path.You might like to check out this site… http://analzheimersmemoir.blogspot.com/

I am always so amazed when I see how many times my website has been viewed.180 thousand visits in the three years since our son Gene gave me this site for Mother’s Day.I truly hope that my experiences and observations have helped others.

Yesterday I spent three hours washing venetian blinds at our winter home.Today my legs are in total spasms, and I’m going to take it easy.

I just spent an hour filling out forms and collecting the paperwork we need for our geared to income apartment.Now my brain is completely frazzled…….so guess all I’m good for today is playing POGO games!

We’ve been very busy moving to our summer home.I really do struggle with these moves, trying to decide what goes to the trailer and what goes to the storage locker.I manage to work myself into quite a frenzy, and end up running around like a chicken with its head cut off! Very unlike my old self where I had our moves down to a fine art......pack, move, and unpack....all in two days!

We’re just back from viewing an apartment this morning.We got a phone call that a geared to income seniors apartment was available for us June 1^st here in Picton, so this might be the answer to my feeling so unsettled.

Still taking the Omega 3-6-9 and B12.Can’t say I’ve noticed any difference, but no side effects either.I still wake up several times a night with the lactic acid burning in my legs.We had read about a condition where the lactic acid builds up in the bloodstream, which can cause peripheral neuropathy and brain damage, so had our doctor order the blood test for lactic acid.It was normal.So….back to the research.

I’ve decided to quit trying these various medications to solve my leg problems. The side effects are quite unreal.I’ve been on the lyrica now for 2 weeks…and the only change I’ve noticed is I’m ravenous all the time.I can eat a meal and half an hour later my stomach is growling and I’m starving to death!I read it can be really good for older people who have no appetite cause it makes them want to eat again.I’m sure not in that category….I’m not old, and I have certainly never lost my appetite!

My research is indicating that B-12 supplements might help my burning legs. I'm not sure if that will work for the lactic acid burning I'm getting, but I figure it's worth a try. I’m starting at the recommended dosage of 2000 mcg for a month, then I’ll cut back to 1000 mcg.

There are also supplements that help with anxiety issues. Taking fish oil supplements high in the Omega 3 fatty acid eicosapentaenoic acid (EPA) can reduce and possibly even prevent the symptoms associated with anxiety, sadness, depression and many other mood-related conditions.So today I’m also starting the Omega 3-6-9. It says on the bottle “Supports Healthy Heart and Brain Function”…….I’m going to cure myself yet!

We had a lovely Easter Sunday here, with all the kids, grandkids and dogs.Our turkey dinner went off without a hitch, if you don’t count the package of peaches and cream corn which is still lying forgotten in the freezer.But I did remember the cranberry sauce….so I didn’t do too bad at all!

I wasn’t able to follow any of the conversations going on around me as my brain can’t focus on just one voice at a time.So I’m sure I missed a whole bunch of interesting stuff!

Sunday evening my legs were revolting from all the activity they had to endure, and I was back to leg spasms, cramps and burning all night long.For two days now I’ve been walking around like a little old lady, hanging onto walls and furniture, since the muscles down the backs of my legs aren’t in working order.

Jim needs me to hold up the walls of the shed today while he installs them on the floor.I figure I’ll manage fine with my walker to help me out!

Looks like Mother Nature is playing a late April Fool’s Joke on us.All that snow covering our pretty spring flowers! And Jim is wanting so badly to get out and get his new shed built!

I’ve finished titrating off the citalopram, and last night started on the Lyrica, which may or may not help with the burning legs at night.Lyrica is another form of the gabapentin which I took two years ago, and it didn’t seem to help.Thank heaven we have a great drug plan, so we can afford to try these various meds.

I’m keeping busy this week getting our home ready for our Family Easter gathering on Easter Sunday.Nine grandkids, three sons and wives, and two puppies! We're looking forward to seeing everyone!

I’ve been on Citalopram (celexa) for a month now to address the anxiety problems.I was on 10mg for two weeks, then started the 20mg.After one week at 20mg, I experienced three episodes of fast, irregular pounding heartbeat.This occurred once after I went to bed, and scared the heck out of me!I was sure I must be having a heart attack.I read the information given to me by the pharmacist, and sure enough, there it was under Warnings!So I’m now titrating myself off Citalopram.

My research into home remedies for anxiety indicated drinking chamomile tea, and fortunately Jim has that in his ‘tea drawer’.

The doctor had thought the Citalopram might also help me sleep, but it had the opposite effect.My brain took hours to shut down.I found this paragraph in my search for home remedies:

"Those who cannot sleep because of mental excitement should soak their feet in warm water. The temperature of the water should not be more than 3 to 4 degrees higher than body temperature. Damp towel soaked in cold water may be wrapped round the head. For more serious cases of sleeplessness, soaking the whole body in a tubful of warm water of body temperature is the remedy. If you can sleep lying in the bathtub for half an hour, it would give you the freshness that two hours sleep in the bed cannot give."

Picture me sleeping in the bathtub with my chamomile tea......and have a great day!

We finally found the shed we wanted for our summer home.This is where Jim can park his riding mower, and store all his various tools.

Jim rented the large van from Home Depot and brought the packaged shed home yesterday.This morning we proceeded to unpack the shed and place it in our van trailer, in the order in which Jim needs to assemble it.My job was calling out the various pieces from the instruction book and marking them off as Jim found them.

That was truly major brain exercise for me.It has taken three hours for my confused brain to get itself unscrambled.Jim has agreed I definitely deserve a Chinese Buffet for all my hard work.

Isn’t life so great?

HAPPY ST. PATRICK’S DAY

I think I remember hearing some of my ancestors were Irish, so I always love this day!

I took my list of medications and supplements into our pharmacist this week and he did a thorough cross reference of everything.He said the only problem he could find was that taking my aspirin at the same time as Vitamin C and Vitamin E would make them both less effective.So I’m back to my regular regime, minus the cinnamon.I still feel that was increasing my anxiety.

Jim has been out three times now for his bike rides, but I’m still just riding our tandem in our livingroom, on the bike trainer.My old bones really don’t like the cold weather, and I’m such a whimp!

I can’t think of a more glorious way to start a day than seeing these 3 deer in our backyard enjoying a few frozen apples that had fallen from the apple tree.Unfortunately I’ve never been able to grasp how to change any settings on our new camera or I could have had some close-ups!

We’ve had a really quiet week with me nursing a bad back.That’s OK….I got lots of brain exercise on my computer, and even got some gentle massages at night.

I’ve been taking my Citalopram (celexa) at night for a week now, with no noticeable side effects.I have noticed increased confusion after I take my morning pills though.So yesterday morning I didn’t take the cinnamon, to see if that was what was causing it.Didn’t seem to help, so today I’m going to leave out the cal/mag tablets, and see what that does.It would be really nice if it was one of my supplements reacting with the celexa, and not my Aricept!Otherwise I’m just destined to be a dizzy dame!

We had a great trip up to Toronto yesterday for my semi-annual visit with my neurologist.It’s about a 3 hour drive, and we usually get caught up in massive slow downs, but yesterday it was smooth sailing both directions.

Dr. Black has started me on a low dosage of Citalopram, which is an antidepressant used to treat a variety of conditions.We’re hoping this will address my issues with anxiety, which have become rather a nuisance in the past few months.

She’s also given me a prescription for Lyrica which I can start in another month, after my body has become adjusted to the Citalopram.Lyrcia is used to treat pain caused by nerve damage.Hopefully this is going to help the night time burning of my legs.I’m so looking forward to having a full nights sleep, without waking hourly with burning legs.

We’re just back from spending a delightful weekend in Ottawa.We headed up early Saturday ahead of the forecast six inches of snow, and had great weather the whole trip.We had lunch Sunday with two of our sons and families at the Chinese Buffet (of course).The afternoon and evening was spent with my brother Dave and his wife Margaret (at their home), with my sister June and hubby Nick.Lots of good food and nice quiet visiting.

Today we had our tour of the Unitarian House, where we placed our names on the waiting list.We were very impressed with the facilities and the staff there.We were glad to see that the apartments have huge big windows as we have discovered over the years that I tend to get claustrophobic when I can’t see out.And of course the electric heating in each unit is very nice and quiet.A big bonus for us is that Unitarian House is located right on the Ottawa River Parkway, so the bike path is right at our door.We were told the wait could be a year or more depending on our need and availability.

HAPPY FAMILY DAY

“There is nothing more valuable to families than time together. And yet it seems tougher than ever to find, with so many of us living such busy lives. That's why on the third Monday of every February Ontarians will have a public holiday--Family Day.”

Thanks to Premier McGuinty!

Rosemary Bakker from Weill Cornell Medical College had signed my guestbook, and asked if she could use some of my tips on her new website.It is still under construction, but you might want to bookmark it.This is going to be a very useful website for caregivers. www.thiscaringhome.org

This week we’re busy planning a trip to Ottawa for next weekend.We’ll be doing lunch on Sunday with two sons, then dinner with my brother and sister.Monday we have a tour scheduled of the Unitarian House. www.unitarianhouse.ca We have our name on the waiting list for this lovely seniors residence where my sister June spends many hours doing volunteer driving for residents there.A number of them have ‘adopted’ her, and she’s the ‘daughter’ who takes them to all their appointments. Being a retired nurse, she knows all the questions to be asking the doctors, so these are very lucky residents indeed.I think I’ll hire her when we move there!!!

You cannot control the wind, but you can adjust your sails.

A great “Thought for the Week” from alzheimersweekly.com

I guess that’s what we did this week when we did our shopping expedition to Belleville.I had our shopping list prepared, and we had six stops on our list before enjoying our Chinese Buffet. We decided it might be easier on my brain if Jim did most of the running, and I just went into every alternate store.This worked out amazingly well.I sat with my headphones on and my eyes closed when Jim went into his stores. My brain was still functioning and I was able to fully enjoy our lunch.

I’ve spent the morning uncluttering my life.Over the years we’ve accumulated various credit cards which we never use these days, and I found it almost mind boggling trying to change our address and phone number on them a month ago.For security reasons, each company has to ask you mega questions to verify you are who you say you are!So my job this morning was to cancel all but two of them.Now I’m off for my ‘brain nap’!

Happy Groundhogs Day…..only six more weeks of winter here in North America!Oh well, we’ll just stay snuggled up cozy and warm, and dream about the warm summer days ahead of us. Jim has definitely been getting his exercise, shoveling all the snow from the driveway!The snowbanks are bringing back memories of the winters in Alberta for sure.

As you no doubt noticed from my last few entries, I’ve been really struggling.On Day 31 of our no smoking campaign, when I was at the positively lowest I’ve ever been, I decided this was not the time in my life to try to quit smoking.I was unbelievably depressed, and couldn’t seem to crawl back out of the hole.

Since we now live in a smoke-free home, I make the occasional trip to the enclosed front porch, and life is beginning to return to normal.

I wanted to give a big thank you to my family and friends who donated to the Alzheimers Memory Walk this year.I raised a total of $653.Hopefully they will soon find the cause and the cure for this disease that is changing the lives of so many families!

I had a short visit in the chatroom this morning.One of the folks there was a caregiver for her grandma.She was saying one of the nice things about having dementia is grandma forgets the bad things that happen….like having an accident in the livingroom.

Now I’ve spent the last two hours trying to think of one nice thing about having dementia.So far nothing has come to mind whatsoever!

I miss me….I miss my old life!I miss visiting with friends and family, on the phone and in person….not having to concentrate on everything that is said.I miss the intimacy Jim and I once shared.My libido flew out the window years ago!I miss wandering down the street window shopping, or through the mall….enjoying people and sights and sounds!Making eye contact with a stranger and smiling…just to get a smile in return!The hours I used to spend on my various crafts such as crocheting, rug hooking, painting, quilting…..it’s all but a memory now.Cuddled up with a good book…. Now that all just boggles my mind!

Now I sit in front of the TV…usually with the sound off….my laptop beside me, usually with a mindless pogo game going.I do a short shopping trip once a week to pick up a few groceries.I spend a lot of time sleeping….just to get rid of the pressure in my head.

Nope….there isn’t one damn nice thing about having dementia!!!

Jim and I were really hoping the changes I’ve been experiencing over the last several months were part and parcel of living in a busy and noisier environment.However, we’re now three full weeks into our new quiet home…..and my symptoms are escalating, not reversing.I find I’m needing to sleep several times a day, just to get my head clear.Yesterday we went to Belleville for a bit of shopping.After one hour of shopping followed by Chinese buffet, I slept the whole 50 minute drive home.Then after putting the groceries away, I had another hour sleep.

My most bothersome symptom is so completely alien to me that it’s scary.Out of the blue I start yelling and screaming at Jim, about something quite inconsequential.My tirade seems to last about five minutes or so, and then I’m fine again.I found the following paragraph in my research as to what is going on:

”Sudden, unexpected outbursts of angry behavior can be an aspect of FTD, and, in rare cases, a person becomes physically and emotionally violent with minimal or even imaginary provocation. Regardless of the perceived slight, they can produce a verbal tirade that sometimes is dif?cult to quell, because they do not appear to understand attempts to explain the situation or calm their anger.”

Unfortunately my next appointment to see the neurologist isn’t until March. In the meantime I need to do some research and see how others are handling this.

Only one week left to support me in the Alzheimers Memory Walk......you can click on the link in last weeks journal entry to take you to the donation page! (and thank you!)

DAY 21 OF OUR NO SMOKING CAMPAIGN!!

I just can’t believe how I’m struggling with our latest move.At the last count, I think I had thirty-four moves under my belt, as things happened in life, and I had become a real PRO.I could pack, move, and be unpacked in two days! Not this time round for sure!I struggle for one hour and give up in tears, with a totally confused head.It’s not just confusion and fog, but my head feels big, and my eyes feel like they’re going to pop right out of my head.

Jim and I were discussing it this morning, after I was telling him that I was experiencing the same confusion after spending just a half hour in the chatroom with a couple of friends, typing back and forth. And I get the same feeling when I try to play my brain exercise games in Pogo.

We’ve come to the conclusion that I’ve become over sensitized from the last couple of months activities, and I only need a month or two to recuperate what I’ve lost. (fingers crossed!)

On to a more positive note, after several tries, I’ve finally figured out how to register for the Alzheimers Memory Walk, and for any of you who would like to support this worthwhile cause, please click on the following link.I won’t be emailing individual requests this year due to a Brain Glitch! https://secure.supportthealzheimersociety.ca/ParticipantPage.aspx?L=2&CCID=26&PID=4305&GC=GTv2

DAY TWELVE OF OUR NO SMOKING CAMPAIGN

Here we are in a brand new year and in a brand new home.After a week of dial-up internet, we finally have our wireless installed, and I’ve spent the last few hours changing our address and phone number with all our various medical/financial/insurance companies.This is indeed brain exercise in the extreme.

We had a lovely Family Reunion last Sunday at my brother Dave’s home in Ottawa, with 37 of us present.Some of the cousins were mentioning it had been twenty years since they had seen some of the cousins.Hopefully we can make this happen more often!I, of course, found my ‘quiet’ spot early on!!

Jim and I are really enjoying getting ourselves established in our new home.I haven’t had to use my headphones since we moved here.We have a few more trips to move stuff either to our summer trailer or here, but it’s slowly coming together.

And our big news…..this is DAY FIVE of our No Smoking campaign.

Jim and I wish you all a very happy and prosperous New Year.Wouldn’t it be fantastic if this was the year that the ‘magic cure’ surfaced?

Our five sons and families all made it home for the Christmas week.We’ve had many enjoyable days together, making more great memories.I’ve spent most of the week in my ‘quiet’ apartment, with short visits to the ‘active’ side of the house, but otherwise relying on visits to my side by the various kids and grandkids.

Sunday is our Family Get-together with my brother and sister and their families, this year meeting at my brother’s house in Ottawa.It will be so good to see the whole family again.

I decided to quit taking the gingko supplement, after reading various articles sent to me about the possibility of internal hemorrhaging.Since I’m already taking aspirin and Ibuprofen daily, which are both blood thinners, it sounded like I’m really taking a chance by adding the gingko into the mixture.

So now I’m back to the basics……aricept and namenda……and lots of brain exercise!!!

Well, I’ve given it a really good try, but I just can’t take the noise any longer of the wood pellet stove or the furnace in the basement.My brain isn’t filtering the sounds, and I end up having to wear my head phones most of the day.So Jim and I started investigating what options were available to us, and found a lovely country home we can move into at the end of the month.It has electric baseboard heaters, which will be lovely and quiet!

This is one of those vacation homes that tourists rent by the week all summer long.So we’ve booked it through till May, when we will move to our summer trailer.Then come October we can just rent this one again, or another one if we would rather.

Check out the website to see where we’ll be.It’s actually only five miles from our summer trailer, so we’re almost moving home!

http://www.countyholidayhomes.com/sunrise/index.html

Our niece Eliyanah sent us some information she came across:

Researchers from Ukraine enlisted 400 patients with dementia in a randomized, double-blind, placebo-controlled, 22-week study. They found that treatment with a gingko biloba extract (240 mg per day) to be associated with improvements in scores for a simple and short test for assessing cognitive impairment of memory and attention (SKT test) and neuropsychiatric symptoms. In addition, caregiver distress scores were reduced significantly among caregivers of patients in the ginkgo group, as compared to a worsening found among caregivers of patients on the placebo. The researchers reported significant differences between the ginkgo and placebo groups in terms of apathy/indifference, anxiety, irritability/lability, depression/dysphoria, and sleep/nighttime behavior. They say the results suggest that supplementing with an extract of gingko biloba may benefit patients with dementia.

So as of today I’m giving this a try.

I imagine most of you have seen those elastic supports they sell for when you have strained a knee, elbow or wrist.Jim discovered they also sell what are called Calf Supports, designed to help return strength to legs.So we bought one to see if it worked the same as the support hose we’ve been working with.Amazingly enough, it seemed to work, and I don’t have any balance problems while wearing it.The really neat thing is, we can buy these calf supports at the Dollar Store!

Nothing new to report otherwise, except I’m sure that the coconut oil has improved my ability to converse with others.I was getting terribly frustrated when trying to speak and having difficulties finding the right words to use.I’m afraid I can’t report any weight loss yet which is supposed to be one of the side effects.Maybe that takes longer!

HAPPY BIRTHDAY to our son LANE

We had an unbelievably great day yesterday!We went to Kingston, where we not only found coconut oil, but also coconut cream.So we’re all stocked up, and ready to try out various options of getting this healthy oil into our diet.

Also, we had been desperately trying to locate the new Disney Tinkerbell DVD for two little granddaughters’ Christmas gifts….and everywhere we’ve tried, they were sold out!We hit the jackpot at Toys-R-Us, where the Disney Rep. was actually there stocking the shelves!

The best part of the day though, was our visit to the surgeon for Jim’s six month check-up for his abdominal aortic aneurysm.The CAT scan showed there was no increase in the size over the last six months….YAHOOOOOO.The surgeon is now informing our family doctor that he doesn’t need to see Jim until the aneurysm has reached a size of 5.4cm, which hopefully won’t be for another ten years!So for now the family doctor will monitor things, with a scan every six months.

That was a really long day, and today I’m having troubles getting my brain back in gear.I noticed in the doctor’s office I was getting very agitated and anxious, and my mouth seemed to go off on tangents.I feel very embarrassed when I recall trying to talk when Jim and the doctor were talking…..but I guess I’m going to have to get used to this, and hopefully everyone around me understands!

I’m not sure if it’s my imagination or not, but I really think the coconut oil is working.We spent a lovely day visiting Jim’s family on Saturday, and I didn’t seem to experience any problems in following conversations.And I’ve also noticed when carrying on conversations on the phone, I’m not struggling trying to get my thoughts into words.I’m up to about two tablespoons a day now, still heading for the three.

I quit taking the cinnamon capsules about two months ago.That seemed to be increasing my anxiety level for some reason.It was so bad at one point I thought I might have to ask the doctor for a prescription to handle that……but I’m back to my normal self again now.

Now that winter is upon us and our wood pellet stove is keeping us toasty and warm, I find I have to wear my head phones or ear plugs most of the day.The hyperacusis (inability of brain to filter sounds) and the fans from the stove are definitely not compatible!Luckily the Dollar Store sells ear plugs!

Well, I think I’m definitely losing it!We went to Belleville on Tuesday for some shopping, and to replenish my coconut oil supply.Now I’m sure we got it at Walmart, but we checked and it wasn’t there.Jim doesn’t remember us getting it there….but I can picture the shelf and even the check out where a computerized voice tells you which check out to proceed to.So we’ve checked out numerous other stores in the past two days….no coconut oil, unless you want the $10 jar at the health food store!($15 for the virgin!)

Maybe Walmart was just out of stock that day…..when I do find it I will be stocking up big time!I read it has a shelf life of two years.

More interesting stuff on coconut oil at this website… http://www.coconutdiet.com/blog.cfm

And just look at all the conditions it helping with:

· Thyroid Health · Weight Loss · Candida/Yeast · Digestive Health · Chronic Fatigue · Diabetes · Skin Health · Alzheimer's · Viruses · Cholesterol

I can’t think where this week has gone to, but it has totally flown by.

I’m still experimenting with support hosiery.We purchased a pair of thigh high, thinking it might help the burning in upper legs.It didn’t and the lower legs were burning also, probably because the compression wasn’t working, as the stockings were falling down!Then we tried a pair of knee highs with the higher compression of 30-40, but this made things worse.So I’m going to stick to the original knee highs at 15-21 compression for now.At least they are addressing the balance problems, and for that I’m very thankful. If anyone wants compression hose cheap, let me know!My drawer is getting full!

I’m up to about one tablespoon of coconut oil now a day.My bottom ‘burps’ a lot, which is rather embarrassing when out shopping, but I imagine my system will soon get used to the coconut oil.Either that or I’ll have to curtail my shopping expeditions!

Two new websites you might like to check out from Australia:

http://early-onset-dementia.blogspot.com/

http://www.dailydementianews.com/

I’m still working at finding the perfect solution for my legs.Wearing the knee highs is great, except the muscles in the back of the thighs still burn.So now I’m trying thigh highs, but for some reason these pull tightly on my toes!I’ll get this figured out yet.

We picked up our first jar of 100% coconut oil yesterday at Walmart.We quite enjoyed a slice of home made bread using coconut oil instead of margarine. It has just the slightest hint of coconut.We still haven’t uncovered any documentation indicating one type is preferable over another, so for now we’re just going to enjoy using this instead of margarine.I did mention that one of the side effects of using coconut oil could be weight loss?

There are several drugs in the final phases of clinical trial, including Dimebon, which inhibits brain cell death, however it looks like it will be two to three years before any of these drugs will show up in the pharmacies.

The forums are now aflutter with the news that coconut oil is helping to improve cognition.There are many articles about the use of it on the internet, but I found this one most interesting. http://www.tampabay.com/news/aging/article879333.ece

Not only is this oil said to be helping alzheimers patients, but also Parkinsons and Lou Gehrigs patients as well.

I hear from my friends you can buy it in Walmart in the States for $4.I’ll have to start looking up here in Canada to see where it’s available.

My friend Marcus from the chatroom sent me the following link also on the health benefits of switching to coconut oil!!

http://www.organicfacts.net/organic-oils/organic-coconut-oil/health-benefits-of-coconut-oil.html

We had decided to do an excursion to Watertown, NY for Jim’s birthday.We remembered enjoying many meals at the Ponderosa Steak House there years ago, and also wanted to stock up on vitamins, which, for some reason, are extremely inexpensive at the Walmarts in the U.S.

We had a lovely hour long drive to the border,and were third in line to do the crossing, when we noticed the sign “Have Documents in Hand”.Jim got his drivers license out but was having difficulties finding his birth certificate.I suggested we had better back out of the line, and pull over to the side until he found it.Fortunately, no one was behind us at that point, and we were able to get moved so as not to hold up fellow travelers.

Jim had just found the elusive certificate, when a very large border guard came barreling over to our car, yelling “What do you think you’re doing?”Jim tried to explain that he hadn’t been able to locate his birth certificate, but he had it now.This obnoxious person kept yelling at us that we weren’t allowed to park there, and should have pulled over sooner, and to get back in line!We made it through the crossing without more hassle, but that left an incredibly sour taste in our mouths.

We did enjoy our Ponderosa buffet, and stocked up on vitamins at Walmart.Unfortunately our debit card wasn’t accepted by Walmart, and we paid in Canadian dollars.They burned us for a whopping 24 cents on the dollar, when it should have been 15 cents.That reminded us that we always got our cash from a cash machine when we visited the States in the past.Needless to say, we were both very relieved to get back to Canada.We had been considering applying for Jim’s passport, which will be required to enter the States in 2009, but why bother.We’re quite happy to stay in Canada.We sure hope our Customs Officers make visitors feel more welcome than the US Border Patrol!

It didn’t help that I had experienced a sleepless night worrying about getting separated from Jim on our travels, in a foreign country.That insecurity thing again rearing its ugly head!

Happy Birthday tomorrow to my Sweetheart!

The results are finally in from the blood tests for Lyme Disease and Celiac Disease….NEGATIVE!

I so wanted to have one of them come back as Positive, and then we could deal with it, and get my brain back to normal!I had even resigned myself to the fact that if I had Celiac disease, no more Chinese Buffet!

Oh well….onwards we go.There’s been a bit of chatter in the chatroom about a new drug that is supposed to reverse the damage.I’ll be posting more about that…as soon as I find out the name and do some research.

LIVING in an Evil Fog

He explains it so well!

My legs are so good these days that Jim and I have been taking short walks everyday, and yesterday I even rode my recumbent bike ten miles…..in two five mile segments.I discovered the neatest thing.I can actually play my pogo games while riding my bike, so it puts a whole new light on exercise!

Now that we’re back at our winter home, and the cool weather is upon us, we’ve been running the wood pellet stove to keep us toasty warm.Unfortunately, hyperacusis and wood pellet stoves are a bad combination.The stove has an air intake fan which runs continuously, and leaves my brain absolutely shuddering from the noise.

We did try using our three oil-filled electric heaters instead, which was lovely and quiet, but Jim was feeling cool, and we know the hydro bill is going to be huge doing that.So I’m back to wearing my headphones all day long.I have discovered one very quiet room….the bathroom…….but haven’t figured out how to get my nice big recliner in there yet.

Fantastic results so far from my support hose!(knee high gradient compression hosiery, 15-20mmHg). No more hanging onto furniture or walls to keep my balance.The muscles down the sides of my legs are now working again after three years.And no more muscle burning or spasms in the daytime at all.

I still haven’t gotten the night time muscle spasms figured out though.I had read various reports on the internet that putting a bar of soap under the sheet at night stops muscle cramps.I’ve tried that for two nights now, but it doesn’t seem to work for me.My bed smells awfully nice though from the Irish Spring soap!

Last night I even wore my support hose to bed, hoping that might fix the night time problems and I could sleep through the night.It seemed to resolve the muscle spasms in my legs, but the cramping in my feet kept waking me up.

A friend told me a few weeks ago that she heard of good results in getting rid of leg pains using cayenne capsules.So of course I immediately purchased a bottle….and took them faithfully as directed.I didn’t notice any improvement with my legs, and they seemed to make my head more confused by times.

I’m going to continue with my experiment of wearing the hosiery to bed, and see what happens.I haven’t read anywhere that you shouldn’t do this, so figure it’s a worthwhile experiment to see if it does fix the problem.Hey…..maybe two bars of soap will help with the foot cramps?

I just wanted to give you an update on my visit to the family doctor today.

With regards to the vertigo, he thinks I have what is called Benign paroxysmal positional vertigo (BPPV).....which is a bunch of big words meaning the little crystals or beads in my inner ear have gotten out of place, causing the vertigo and dizziness.This may occur again but we now have the website to refer to...and do the required exercises to try and get the little guys back where they should be! http://www.tchain.com/otoneurology/disorders/bppv/bppv.html

With regards to my legs, and the burning and cramping, etc., he wants me to try compression hose, and see if the problem is actually caused from blood pooling in my legs.We phoned and found out our insurance will cover four pair a year at 100%, which is fantastic, as these little gems cost about $25/pair here.

He has also ordered the blood tests for Lyme disease and Celiac disease.Unfortunately the blood work for celiac disease is not covered by our Ontario Health coverage, nor is it covered by our private insurance.So looks like it will cost us close to $100 for these tests. Well worth it though, if we discover I have a curable form of dementia.

Happy Thanksgiving Canada

We had a lovely family gathering yesterday with 22 of us enjoying a huge turkey with all the trimmings.I flitted back and forth from the family side to my quiet side of the house which worked well.The weather was absolutely fantastic, and the kids had great fun outdoors making a fort.

I’ve been experiencing vertigo for a week now, with the room spinning on a few occasions, and several bouts of nausea. Often when I’m walking, I have to grab onto walls or furniture to keep myself upright.The most frustrating part is I haven’t been able to spend much time on my computer as this seems to make things worse.

Oh well….we have a visit to family doctor tomorrow…..so maybe I can find out what is going on.The room spinning is actually quite interesting, rather like being on a merry-go-round, so I’ll just enjoy it when it happens.

What a lovely day here at the summer trailer!Yep…I’m back here for a few days…I was just missing Jim too much, and asked him to bring me back.It looks like we’ll move back to our winter home on Thursday though, as the rain is forecast to return.

Now for all my Canadian viewers who haven’t already done so, I’m asking if you will please click on the link below, which will take you to the Alzheimers Canada website.You just need to fill in your name and address, and a letter will be sent to the persons running in the Federal election in your area, asking them to make dementia a priority health care item for once.Approximately half a million Canadians currently have dementia, and that is expected to double within the next generation.

http://e-activist.com/ea-campaign/clientcampaign.do?ea.client.id=29&ea.campaign.id=1390

Thank you all very much.

We’ve moved me back to our winter home.The dampness and cold was doing a major number on my hips….so I’m back sitting comfortably by the wood pellet stove, while Jim remains at the summer trailer doing his fall jobs.He also seems to get involved helping all our neighbors with their winterizing and shut-downs.

Our five sons are busy planning a lovely week at Puerto Plata Dominican Republic for a week in January.They’ve been trying to talk us into joining them, as we’ve never had a chance to do one of these all-inclusive vacations before.

For a whole day I was actually checking out the websites and activities offered, and getting myself quite excited at the prospect of spending hours with my family in the pools and experiencing everything they had to offer.Then of course I had the bump back to reality.I struggle spending an hour or two in stores, with all the people, noise, and lights, so we limit ourselves to doing this once a week. And when the kids come to visit, I have to retreat to my quiet spot every hour.

When I get sensory overload like that, it’s like my brain just shuts down.I can’t focus on things around me.It doesn’t register in my brain what it is I’m looking at. People talking to me, or around me, becomes a huge crescendo of noise.A complete feeling of panic overtakes me, and I feel totally overwhelmed.My brain definitely feels like it is ‘shuddering’, and I feel like I want to curl up in a ball, and cry.

I often hear caregivers saying they have to give their spouse an extra dose of their medication that handles this extreme anxiety before any outings, so they don’t go into complete rages.

So far I’ve been able to control how much input I get, and have been able to back off, and let my brain recuperate without having to resort to one of the psych drugs.

So….it was a nice dream…..but back to my reality!

I met Linda from Oklahoma in the chatroom back in early 2006 just after I had been started on Aricept.She told me I really needed to ask my doctor to also start me on namenda (ebixa in Canada) as well, because it had made a fantastic difference in the fog in her head.When I asked my doctor about it in July/06, she said that I wasn’t confused enough to need it yet.Sheesh….confusion was my biggest problem! Anyways, I insisted, and she grudgingly gave it to me, telling me she had just taken two people off it that day, cause it wasn’t doing any good!

Well, this latest New Release confirms what I have already found…that the combination of the two drugs is working better, and in fact,their research is showing those on the combination are showing the smallest amount of decline.So it seems to me if you add hours of brain exercise to the drug combination, maybe there is no decline at all?

Study confirms benefit of combination therapy for Alzheimer’s disease
First long-term study finds that treatment slows symptom progression, benefits last for years

September 22, 2008

After a bad night of leg cramps and spasms, Monday was one of those days where my brain seemed to be ultra sensitive to sounds and sights.I had my head phones on most of the day, and the curtains drawn.An afternoon nap didn’t seem to improve things much, other than to stop my brain from shuddering.

I slept well last night…and today things seem back to my normal me!Thank goodness.

I have an appointment October 14^th with our family doctor….to confirm that I have had the Lyme disease blood test, and to request the blood tests for Celiac disease.There are a few people waiting to hear the outcome of this testing…..others who have also been diagnosed with alzheimers, then frontotemporal dementia…and now their doctors are saying maybe they don’t have a neuro degenerative disease, because they aren’t exhibiting the downward progression of the disease.

I still think it would be an amazing discovery if they found that those of us who are being so pro-active, and exercising our brains all the time have found a way to keep the disease at bay longer.

We’re enjoying our last few weeks at our summer trailer before moving back home for the winter.We got out for three tandem bike rides……just two and a half miles each…..to see how things went.My legs didn’t stop burning for four days, so unless they can figure out what is going on with my legs, I’m destined to be fluffy!

Dr. Black is suggesting to our family dr. that I undergo the blood test for Lyme disease, because she’s not convinced now that I have a neuro-degenerative disease, since I’m not showing the normal downward progression that she’s accustomed to seeing. Also, our niece Eliyanah has forwarded various articles to us about Celiac disease causing dementia and peripheral neuropathy, among other things.So I’m gradually gathering all the information I need to present to our family doctor, to have those tests performed as well.

Wouldn’t that be amazing?All my problems fixed with a gluten free diet?

We had my six month visit to Dr. Black yesterday.She is totally amazed with how well I’m scoring on the testing, and said I don’t have alzheimers, and in fact she’s not even sure I have a neuro degenerative disease.I’m just not like any case she has ever seen or heard about.But then I don’t suppose she has ever met or even heard of a person who, since diagnosis, has spent her entire life on the computer.I’ve spent my days researching, visiting forums, chatting at the chat room, and playing brain games for nearly 3 years now.I even manage to fit in some laundry, housework and meal preparations!

She has no idea why I’m struggling so much now with sensitivity to light and sound, and could give no suggestions on how to help that. She did say that more atrophy is showing up in the frontal lobes on the last MRI.

Jim and I had conducted our own experiment on Monday…..absolutely no conversations!We typed all our comments to each other all day, or used sign language…..and my brain was great……no problems with hyperacusis or light sensitivity.

So I guess I’ll just carry on with what I’m doing, and experimenting with what works for me, and see her again in six months.

The scary thing is….she has again put Jim in charge of my aerobic exercise!Help!!

Our son Ralph is a computer engineering technologist, and is able to come inside our computers from his home in Ottawa and work his magic.He moves stuff around, gets rid of the garbage, and tweaks everything to get it running normally again.

Can you just imagine when science has developed this same technology for working on our brains?

It’s been a week now with no cinnamon capsules, and there has been no improvement in my brain confusion.It would have been really nice if that had been the magic cure.

So I’ve had a really quiet week, trying to figure out some new techniques that might help.Dr. Mitch said in chat last night that they’re finding meditation is working for patients with alzheimers and frontotemporal dementia.I had already been trying this all week, so I guess I’m on the right track.

Jim and I did get out for a tandem ride one morning.I discovered I could just close my eyes and peddle along for quite long stretches, which didn’t seem to overload my brain as much. Found the same thing worked on our kayak ride too. Jim had the line hooked onto my kayak, so I could just sit there and enjoy the ride.Only problem is…..now he wants to be towed!

I wanted to explain why I’m sharing all my day to day experiences with you all.I’m not feeling sorry for myself or what I’m going through in any way.I just think this is a really good way to explain to my family and friends of how things are for me….so they can understand better how I might be presenting myself to them.

Also….I have about 2000 hits a week to this site, and I’m trying to share with others what their loved one might be experiencing, but is unable to express to them.I’ve had a number of caregivers tell me in the chat room that this has really helped them understand the various issues they’re dealing with.

We went to our winter home this morning and had a lovely visit with sons Dave and Sandy, and his wife Melissa…..and 7 grandkids and 4 foster kids.I got enough hugs and kisses to last me for another couple of weeks.After 1 ½ hours, I feel like I’m quite drunk, and it takes me several hours to get my head back to its normal state, whatever that is.

I’m trying another experiment……no more cinnamon capsules.I’m trying to see if this had any bearing on my having so many bad brain days.I will definitely keep you posted on this one!

My brain is definitely playing games on me these days.I’ve discovered if I wake up in the morning and hear the “electric throbbing” in my head, it’s going to be a Bad Brain Day!I am extra sensitive to sights and sounds on these days, and my brain is doing its little dance or ‘shuddering’.Everything seems to ‘startle’ my brain also.I was out hanging out a load of laundry yesterday, when a little flying thing bit me…..and my brain just about jumped out of my head!I’m learning on these days to just veg out….and hope for a better day the next day.

A number of times lately I’ve woken up abruptly from my afternoon nap, because I’ve dreamt Jim has forgotten me at a service center.I’m almost scared to have a nap anymore! Not sure if this is because I’m worried about his memory or mine.I have an excellent memory at this point, so…..!

The other disturbing thing that has been happening for months is that any time I’m thinking of using a knife to cut anything, the very next thought that comes to my head is slicing off my tongue. This seems to be related to the fact that my tongue has felt huge in my mouth for months.Have no idea what is going on with that for sure.

And I won’t even discuss the fact that I got lost after using the bathroom the other night….that was indeed too frightening to even think about.

Yesterday was my doppler ultrasound trying to determine the problem with my legs.Now we wait three weeks to hear the results from our doctor.Strange how with all the latest technology these days we’re still trying to figure out what is going on three years later.

I’m having increasing difficulties with speaking and understanding what is being said to me.It’s taking my brain longer to process what is being said to me and for me to be able to make the right response.Phone conversations are the worst, because the person on the other end thinks I’m not paying attention to what they’re saying.They can’t see me sitting here struggling with it…..makes me feel very sad sometimes.

I’m starting to sit in the chat room at alzinfo.org again.I really want to be able to help others along on this journey.I read that only 30% of people with dementia have any insight into what is going on with them, so I think its up to us to try to inform others of what their loved one might be experiencing.

So a couple of hours morning and night in the chat room, and Pogo in between to keep my brain exercised!I really should be doing this on my exercise bike….so I could get my body back in shape!Oh Fluffy Me!

This was the thought for the week at http://www.alzheimersweekly.com/ It is so true!

Yesterday we had our Birthday Bash.I had decided I wanted to make this a ‘special’day for everyone there, not just Ralph and me.Jim bought a big bag of balloons, and we inserted a ten dollar bill in each balloon before blowing them up.At the party, everyone was given a plastic toothpick and got to pick out a balloon out of the big plastic bag.At the count of three everyone popped their balloon…..and got their surprise.Five year old Kyra had picked the extra special balloon which had twenty dollars in it.

This was indeed the most ‘fun’ birthday party I’ve had in years.Of course I screwed up with my camera again, and ended up with a video of my feet, so I’m afraid I can’t share with you the picture of everyone holding a balloon and toothpick!That would have been a photo for my Memory Book for sure!

Everyone who has the opportunity of enjoying Jim’s Calico salad will be very relieved to hear that we have finally hit upon the perfect solution in regards to my previous posting, about losing bits and pieces of thumbs and fingers in my job as sous chef.Today I used the Faberware electric blender, making sure I didn’t overdo my job…..and still kept most of the veggies in a diced form, rather than completely mulched.Jim has taken over dicing the apples and oranges and I’m wearing no band-aids today.

Tomorrow we head to Toronto, with our strictly vegetarian Calico salad, to join Jim’s family in a backyard wedding for Jim’s brother Ken and Amber.So far the weatherman seems to be listening to all our requests for a beautiful day.

Sunday we have our Birthday Bash at son Dave’s.Ralph was my birthday present 34 years ago….and so far we’ve only missed one birthday together.So lots of fun family times in the next few days.

I just may have to retire as Jim’s sous chef.Today is the Annual Spaghetti Dinner at the campground, thanks to Pat and Dayton, our Hosts and owners of the Johnson’s RV Park.

Jim always takes his famous Calico Salad to any gatherings (which is a glorified macaroni salad with more fruit and veggies than macaroni).I usually spend about an hour cutting up all the goodies to go into his salad.But I’m having increasing problems keeping my fingers out of the way while I’m slicing and dicing. My brain can’t keep track of fingers and cutting at the same time.

I did try our Faberware blender once, but everything came out smaller than the chef liked.So this morning after slicing my thumb and the end off one finger, I thought I had figured an ingenious way to save my fingers…..and ended up just about slitting my wrist.

So…back to the drawing board…..there has to be a way for klutzy people like me to still function….keeping all our appendages intact.

I wanted to share my observations about hyperacusis, which is a condition caused by the brain not filtering sounds.

Most days the drug Baclofen keeps things down to a dull roar.But then there are days like today, when every tiny sound is amplified a million times in my brain!

Brushing my teeth this morning was a startling adventure to say the least, not to mention the thundering I experienced having my shower.I wince when Jim coughs, and had to don my earmuffs when he started puttering in the kitchen.I really think I’m going to have to get rid of my nice set of Corelle dishes.They have this lovely design that is painted on…..and when you move a utensil across the painted section….it is very loud!

I went back for a nap for an hour, hoping I would be back to normal, but no such luck. I had had a bad night with jumping out of bed starting about 3am to get rid of leg cramps, so definitely a nap was called for!

On a day like today, not only are the sounds amplified, but I hear a very loud zapping sound which reminds me of an electric current.I thought maybe I was hearing my pulse, but it doesn’t correspond with the heart beat.

So…..guess I’m just a live wire….with a short circuit.

Jim and I made the three hour trip up to Ottawa on Monday to pick up our son Lane, who had spent the weekend visiting with our son Ralph and his family.Of course I managed to arrange a gathering at the Chinese Buffet there, which also included my sister June and her hubby. The meal was fantastic as usual….and it was good to see everyone.

Then we did a quickie visit to my brother Dave’s house, pictured above with our son Lane.Dave and Margaret are in the process of renovating their home in Ottawa.We can hardly wait to view the finished project in another two months.

Lane and I spent two full days on our laptops…..teaching him various tricks that we’ve learned, and of course introduced him to pogo.com.Lane even managed to teach me backgammon, and I whomped him a few games.

Jim and Lane headed off to Toronto today to visit Jim’s family, with Lane flying off to Vancouver later this afternoon.Jim plans on staying the night there, and help his sister with the yardwork at the parent’s place.

I, on the other hand, get to stay home and do nothing, just relax.Well, I might do some laundry, bake some bread, and vacuum, along with my pogo games, but my brain is having a relaxing day!

HAPPY 39TH BIRTHDAY DAVE

What a fantastic weekend…with our five sons all together again.Gene and Lane and grandson Justin flew in from Vancouver on Thursday.So Friday we had the five sons, three of the daughter in laws, ten of the grandkids, and four ofDave’s foster kids at our winter home.

The weather was perfect for a lot of outdoor activities for everyone.Dave’s pool was well used, along with the four wheelers, our tandem bike and Ralph's inflatable gym.

Saturday the sons had a golf tournament, and Jim and I stayed home at our nice quiet summer trailer.Sunday, we had hoped to have a day at the beach with Ralph’s new boat, but Mother Nature decided we needed a day of rain, so the day was spent back at our winter home.

I managed really well…..visiting here and there…then back to my quiet side of the house.I could always tell when I had enough as I would start stumbling over what I was trying to say, so then it was time for a brain break again.

We’re hoping to have all five sons and their families home again at Christmas for our next Family Get-Together!

My sister June and hubby Nick arrived down from Ottawa on Thursday with their motorhome…..we had a lovely visit with them.I introduced them to pogo.com, and we lost Nick in his world of Bridge!

On Sunday we travelled to Toronto to visit Jim’s folks, and enjoyed a birthday party for his older brother Don.

Monday we not only did a 10 mile bike ride on our tandem, but also a kayak ride…..it was a beautiful day.

Tuesday was a complete brain dead day….accompanied by nausea and the runs.I slept off and on most of the day.So….did I just have a bug…or was this the result of too many days enjoying myself?Or, as my friend Kathy mentioned…..I seem to be getting sick every month just around the full moon cycle.Very strange indeed.

Oh well…I’m back to my normal self today….and heading to Belleville for shopping and Chinese Buffet!Life is good!

Time to do an update on my cinnamon experiment.I’ve been taking 1gm morning and night now for four months.I have no idea if this might be why I’m doing so well.After reading more about it, I see where others are taking 3gm a day, so I’m now upping my intake to 3gm also.So 3 of the 500gm capsules morning and night.I’ll see how this works.

I’ve also started cycling again with Jim….and so far I’m still having the same burning and cramps in my legs…no more or no less….so that’s good.

A new development would be spasms in my hands….where a finger or thumb goes into a spasms, and the muscle pulls in tightly.This isn’t painful at all…and I can just pull the finger or thumb out again….and seems to stop the spasm effect.

My light sensitivity seems to come and go….so I just keep my sunglasses very handy.

So all in all…I’m doing GREAT!

HAPPY CANADA DAY

The sun is shining and the birds are happily chirping, and you couldn’t ask for a nicer day.

I’ve had to don my clip-on sunglasses once again.The light sensitivity I experienced two years ago has returned with a vengeance.So the curtains are all drawn, the brightness on my laptop is turned way down, and I’m wearing my clip-ons.Without them on, I have tremendous pressure in the frontal lobes, and my brain feels ‘startled’ when I move my eyes.

I received an email from a friend the other day, saying she had been missing my postings at the FTD forum website.I was totally shocked that I had forgotten about this website that I used to visit frequently……me, who prides myself on having this fantastic memory!It was really strange, because I had just been wishing a week ago that I had someplace to go to talk to others with FTD… and it still didn’t register.Oh my!So I’m now back posting at the www.ftdsupportforum.com

And I really do have a good memory….it just needs a nudge now and then!

Jim and I celebrated our 28^th anniversary on Monday.Wow, twenty eight years....pretty good eh?We’ve decided to buy ourselves a 24 inch monitor for Jim’s computer.Hmmmm….too bad they didn’t have a 28”.That would have been appropriate I think.We’ve come a long way since our first 13” for sure.

I’m not sure if I’m having increased problems conversing with others, or maybe it’s just the fact that I’m conversing with others more frequently, since we’ve moved to our summer home.I mostly limit myself to just one-on-one conversations with friends here, but even then I struggle.The words come into my head and get processed, and then I’m supposed to get the right responses back out…..and this is where I’m struggling.Of course, my ideal world…..everyone would walk around with small keyboards….and we would type our conversations back and forth.My brain seems to do well with that kind of conversing!

Our summer is rolling along nicely.We made our weekly trip over to our winter home yesterday for Jim to do his trimming around the gardens and fences, a chore he’s taken upon himself to help Dave out.That lets me get a couple of hours of visiting in with Dave and the grandkids. Sandy and Melissa and the five kids stopped in last Sunday for a short visit on their way home to Bowmanville! The kids loved our home on the water.

We had our Alzheimers Support Group on Tuesday.It’s always nice to see how everyone else is making out, and share ideas with each other.

It was interesting to hear that they all agreed…….you’re better off not telling people you have alzheimers.In fact, we all work extremely hard at appearing normal when around others.They agreed if we told people we had a 'brain cancer' or some sort of brain disease, we would have people rallying around us to see how they could help.Hmmmmm……Society is indeed strange!

This is my first Journal entry on my new Dell Vostro 1700…..my early birthday present.

Our son Ralph ordered it from Dell, and using a special program he has, was able to come into my laptop at home from his home 3 hours away, and retrieve all the files from my old laptop and install them on my new one.So today we met Ralph and family two hours from our place and exchanged laptops.Very exciting! Jim and I checked out a couple of Dollar Stores, while waiting for Ralph to arrive, and stocked up on some super deals.

It was great to see Ralph and family….and get some hugs and kisses from the grandkids. We did a bit of shopping with the kids but after about fifteen minutes we had to kiss them all goodbye and head out of the store. My brain had come to a screeching halt!

So now I’m sitting here in the van, with my headphones on, thoroughly enjoying my new laptop, while Jim is cruising down the highway.

A lovely weekend, weather wise....a rough weekend brain wise! I have mentioned before how little problems become humongous issues to me and I can’t seem to control the anxiety I’m feeling. Our wireless quit Saturday evening, and unfortunately our server doesn’t provide tech support on weekends or nights. So even though I used dial up all weekend, and did fine with it, I just kept getting madder and madder at the injustice of it! $50 a month and no tech support! So of course first thing this morning I’m on the phone asking who I speak to about this issue. Well, I need to speak to the owner...and she’s on holidays!

Poor Jim.....I must admit he handles me well! I think when he’s had enough of my ranting, he jumps on his lawnmower for some peace and quiet....with his headphones on! He he

I finally got an appointment for an ultrasound on my legs to check blood flow.....August 10^th. Good old Canada and our health system! Oh well, I’m finding if I just sit and do nothing, my legs aren’t burning......so here I’ll sit.....and play Pogo.

We are finally all settled in to our summer home at Johnsons’ RV Park. The weatherman is not cooperating at providing lovely, sunny days for us yet, and we’re having to resort to the use of our little heaters to keep us warm and cozy.

Jim has managed to get out for about five evening kayak rides so far, and several bike rides. Even managed his first twenty mile ride yesterday. He’s so good. He got a new toy this year...a Toro 4200 riding mower....and he’s having such fun cutting everyone’s lawn in the campground. He said it’s like dancing.....all the pirouetting he’s doing!

I’ve had several rough brain days.....and have been going back to bed several times a day. At this last nap an hour ago, I was trying to figure out what is going on. My brain feels like it’s shuddering, and the tinnitus I’ve had for years is absolutely deafening with the ringing. After an hours nap it is back to normal.

When I googled "brain shuddering", I found it used to describe a side effect common with several drugs, so I guess my feeling of brain shuddering was correct. Only thing is, I’m not on any of the drugs that were mentioned.

I’m thinking this is being caused by the heater fan running all day....and my hyperacusis.....so I’m wearing my headphones all the time now....and we’ll see if that helps.

We had an interesting support group meeting at our Alzheimers Society office yesterday. It’s really great when we can share our experiences and how we’re dealing with various areas of our journey.

One of the interesting things we discussed and that has been highlighted in the news is the use of ibuprofen to reduce the risk of alzheimers.

Ibuprofen Linked to Reduced Alzheimer's Risk

(Source: AAN) - Researchers examined over five years of data involving the use of non-steroidal anti-inflammatory drugs (NSAIDs) and the risk of developing Alzheimer's disease.

They found that people who used ibuprofen for more than five years were more than 40 percent less likely to develop Alzheimer's disease; the longer ibuprofen was used, the lower the risk for dementia; and those who used certain types of NSAIDs for more than five years were 25 percent less likely to develop Alzheimer's disease than non-users.

You can click on the link here to read all about their findings:

http://www.aan.com/press/index.cfm?fuseaction=release.view&release=624

However, another article just came out yesterday:

Anti-Inflammatory Drugs Inefficient in Preventing Alzheimer's
(Source: EfluxMedia) - Just one week after researchers from Boston University School of Medicine stated in a study that use of non-steroidal anti-inflammatory drugs (NSAIDs) for five years was linked with a 24 percent reduced risk of developing Alzheimer's disease, results of a clinical trial show that neither Celebrex nor naproxen (both belonging to the class of NSAIDs) preserves mental function.

Moreover, it was found that naproxen (Aleve and Naprosyn) may even have a harmful effect on cognitive function.

So....guess you need to watch which anti-inflammatory drug you’re taking. I’ve been on naproxen for ten years....ah......time to quit I think!

Just back from our trip to Kingston to see the surgeon about Jim’s abdominal aortic aneurysm. Definitely Jim is going to require surgery, but at this point it’s still a waiting game. The doctor wants to wait until it has grown from 4.0 cm to 5.5 cm. He assured us there is no chance of it rupturing at this point. So for now we carry on with the ultrasound every six months....and keep an eye on things.

We also went to the ear specialist yesterday. I have a 25% hearing loss in both ears, which he said is borderline for getting hearing aids. But since I have hyperacusis, and spend all my time trying to keep sounds out of my head, he agreed we certainly wouldn’t be bothering with hearing aids at this point.

We did pick up another pair of ear muffs at the Industrial Supply place....these have a decibel rating of 30....and are lovely and quiet. Jim has discovered the joys of highway driving, wearing my 27 dcb earmuffs!

So now we’re packing up for our move to the summer trailer......the next journal entry will be from Johnson’s Marina and RV Park.

This was the Thought for the Week at the Alzheimers Weekly site... http://www.alzheimersweekly.com

I thought it very appropriate for many of us on our journey in life.

Five years ago, while undergoing testing for some problems Jim was having, they discovered an abdominal aortic aneurysm.

An aneurysm is when a blood vessel becomes abnormally large or balloons outward. The abdominal aorta is a large blood vessel that supplies blood to your abdomen, the pelvis, and legs.

Jim has been going every six months for an ultrasound, monitoring the size of this aneurysm. It started off about 2cm and has now grown to 4.5 cm......so we go to see the surgeon this week to see what needs to be done at this point.

The weather hasn’t been cooperating for our move to the summer trailer. In fact we woke to frost on the ground again this morning....definitely not trailer weather! Jim is monitoring the forecasts and will decide when he thinks we can safely move ourselves down there without freezing our little tootsies off!

This has been a strange couple of weeks. I'm having more brain confusion....similar to a year ago. I can't pinpoint anything I'm doing differently. I've been struggling for two weeks to keep my Brain Age out of the 40's.....and haven't been able to get it back into the high 20's at all, even trying it at different times of the day. I had thought it might be because I'm not sleeping well because of my leg problems. But I took an aspirin last night to see if thinning the blood gave me less pain....and I had a good nite! Have no idea if the aspirin did the trick or not, but I'll keep taking it in case. But had a Brain Age of 42 today....so even sleeping well didn't improve my brain! Oh well....I'll keep working on this problem...see what solution I can find. My friend Kathleen from chat introduced me to Pogo.com this week.....more brain exercise! I'm totally hooked on BINGO of course! And if you're ever in there, just look for me....I'm the Demented Lady!

After all my research on hyperacusis, it seems baclofen is a drug which helps it.

Baclofen is a muscle relaxer and an antispastic agent. Baclofen is used to treat muscle symptoms caused by multiple sclerosis, including spasm, pain, and stiffness. Baclofen may also be used for treatment for hyperactive auditory disorders such as tinnitus and hyperacusis.

Now baclofen is the drug my family doctor put me on last spring to see if it helped with my leg spasms and cramping. But a month later my neurologist took me off it again, as she said it might interfere with my brain problems.

So......I had my prescription for baclofen refilled.....and took one in the afternoon...and one in the evening....and VOILA.......the noises weren’t reverberating through my head. As well, my legs were fantastic throughout the night! It was amazing!

So I took one morning and night the next day as well......my head was good....but didn’t seem to help the legs the next night at all....in fact they were worse than usual. Then last night again....they were good!

So......even though baclofen is recommended for spasms and leg cramps....there doesn’t seem to be a pattern for when it works or not......but the main thing is.......I’m hardly having to wear my ear muffs at all! Certainly, I’m not back to anything like I experienced for two days!

I’m having increasing problems with sounds. In fact, I’m having to wear my ear muffs most of the time now. The fridge, freezer, ceiling fan and fan from the wood pellet stove seem deafening by times. I’ve done some research on it.....and this is what I’ve discovered.

Hyperacusis: A Hearing Impairment

Most people know of only one type of hearing impairment - deafness. Hearing no sound at all can be very difficult but looking at the opposite side of it, hearing too much may also prove to be as hard. Hyperacusis is defined as the intolerance to normal and everyday sounds. Hyperacusis is said to be caused by a malfunction in the sound regulatory system of the brain.

I guess this is similar to the malfunction I had two years ago when I had a problem with sensitivity to light, and had to wear sunglasses in the house. So maybe this ‘malfunction’ too might pass in time! In the meantime I’m going to curl up in my corner with my headphones on.....and wait for the noise to stop!

Just back from Kingston....another EMG (electromyography) and nerve conduction test. Again, everything is looking good, and again no explanation for the muscle burning and cramping in legs and arms. Dr. Bolton said he would be suggesting to family doctor that maybe a Doppler Ultrasound might be the next option to have done. A Doppler ultrasound test uses reflected sound waves to evaluate blood as it flows through a blood vessel. It helps doctors evaluate blood flow through the major arteries and veins of the arms, legs, and neck.

So now, we wait again.....the story of our lives.......and see what the next set of tests find. I guess after two years of complaining about my legs, I should be getting fairly used to it eh?

We of course did get our Chinese Buffet, so now I don’t need to think of food again until sometime tomorrow!

Dr. Mitch Slutzky, the geriatric psychologist, who spends an hour with us in the chatroom each month, again spent the hour telling us how important it is to keep our brains exercised, not only for people diagnosed with dementia, but for their caregivers as well.

I wanted to tell you a bit about the Nintendo DS Brain Age Game, that I’ve been using daily now for almost four months. It’s a small hand held computer....which makes it really handy for taking in my purse when we go anywhere. I have Brain Age Game I and Brain Age Game II. Each morning I do the brain test to see how old my brain is, and then I carry on with the brain exercises. Brain Age Game I are easier exercises than Brain Age Game II. In Brain Age Game I my brain scored as young as 18 years old.....in Game II, I’m struggling to keep it at age 30.

In Brain Age I, there are several math exercises, a reading aloud exercise, a syllable counting exercise, remembering the sequence of numbers that popped up on the screen, counting the number of people who went in and out of a house, and calculating the time lapse on two clocks. Then of course there are 120 Sudoku games.....in Basic, Intermediate and Advanced.

In Brain Age II, there is Sign Finder...where you draw with the stylus the sign beside each number, Piano Player, in which you actually have to tap on the right key on the piano to match with the key on the sheet of music given, Word Scramble, Memory Sprint in which you have to remember what place the runner ends up in the race, Change Maker, of course counting out the correct change in money, Word Blend, where you listen to the word you hear and write it, Calendar Count, Math Recall, Clock Spin, another time exercise, Block Count, remembering how many blocks fell in each row, and then my very favorite (big time waster) Virus Buster. This of course if a type of Tetris game.

Walmart carries these games.....$134 in Canada for the Nintendo, and $19.00 for each of the games, so really very affordable and definitely a good investment.

P.S.......I don’t work for Nintendo either! He he

This has been a lovely week......which included having Chinese Buffet with my brother Dave, sister June, son Ralph and their families......and several shopping trips here and there.

I managed really well at the buffet to keep my brain together...more or less, and only had troubles several times getting my words out. Not bad for the demented lady! he he

My ear muffs worked well in the van again on our travels....they let me give my brain a rest from the input along the way.

Now this evening would be an excellent opportunity for any of you who are interested to come and meet Dr. Mitch Slutzky, a geriatric psychologist from NY. He spends an hour with us at 9pm EST the first Thurs of each month in the Dr. Mitch chatroom ....on our chatroom website http://www.alzinfo.org/alztalk/flashchat.php

Everyone is more than welcome...and I had the webmaster increase the seating capacity in the room to 150......so plenty of room for you all!

Just back from our Toronto visit. I’m nearly wiped out.....after MRI, SPECT scan, cognitive testing, and appointment with Dr. Black. But got some excellent results......doesn’t look like my brain has deteriorated any in the last year and a half. And Dr. Black is quite amazed how much I improved on the cognitive testing. Even my memory was better, and she said that is unheard of! We explained about my spending about twelve hours a day on the computer, and in the chatroom, giving my brain a major workout all day long. Also told her about our cinnamon tablet experiment. She was quite interested in this as well. Now, do you suppose the two weeks on cinnamon has got something to do with this improvement?

After discussing how well the applejuice is working at letting me sleep through the night, she’s wondering how she could do a ‘blind study’ with the applejuice.......so we’ve got her thinking now.

We had a lovely Easter Saturday, with three sons, six grandkids and three foster kids. My quiet space worked out very well, and my earmuffs got a good workout!

I did well on my diet......only had half a banana in the morning before our big turkey dinner in the afternoon. I enjoyed every little tiny morsel. Sunday was back to counting calories though.

Jim has decided we need an adventure so we’re going to head south to find some warmer weather. Looks like next week is the only week without appointments. So we’re studying the maps, and planning where we might go. Looks like our first stop will be Pennsylvania to meet one of my chat room friends, and then on to Tennessee to meet up with another one.

Jim figures we can take our tandem bike along....might get some biking in.....and we’ll probably take my porta-potty along as well in our van. Never see a rest area when you really need one. He he

Day Ten of my 2000mg a day of cinnamon. No changes to report as yet. A friend from the chatroom in MASS has found me a supply at her Walmart.....$3.54/bottle.....so she will be my new supplier!

Day Ten of diet.....1200 calories a day....no weight loss......so trying 1000 calories a day now.....after 2 days, down 2 pounds. That is definitely an improvement! Bikini time....here I come! Yeh, right...in a pig’s eye!

43 more sleeps and our campground opens! This is always such an exciting time for us. We move ourselves down to Johnson’s Marina & RV Park http://www.pec.on.ca/johnsons/findus.htm for the summer months. This is a lovely quiet spot on the shore of South Bay, on Lake Ontario. Pat and Dayton even rent out cottages, so maybe some of you would like to come down and meet us....and spend a week of relaxing, and enjoying a bit of the quiet life. Dayton can rent you a motorboat to try your luck at fishing, or you can try your hand at kayaking in one of our 9'6" adventure kayaks. You might even enjoy going on a bike ride with Jim and I, and see some of the beautiful countryside. Sound inviting? Definitely check out the photos on the link above!

Day Five of my Cinnamon experiment, .....2000mg/day. No changes to report as yet.

Day Five of my 1200calories/day diet. No changes to report as yet.

I did try substituting 1 cup of unsweetened applesauce instead of the two glasses of apple juice, but that didn’t work for keeping me asleep all night. So I’m still using up 138 calories for my sleeping aid!

My cognitive testing, MRI, SPECT scan and appointment with Dr. Black are scheduled for March 27^th. This is an all day study, so we don’t have to make several trips to Toronto. This is part of the FTD study that I’m involved in at Sunnybrook Hospital.......and I’m glad we’re able to have a look and see how things are at this point. It would seem to me with the hours I’m spending daily in the chat room at http://www.alzinfo.org/alztalk/flashchat.php trying to remember the details of all the people I’ve chatted to before, that my brain would have grown tremendously in the past one and a half years!

My family doctor referred me to an ear specialist last fall to see why my ear had been plugged for over a year. I’ve now gotten an appointment....for March 19th! We have a great health care system in Canada.....just one flaw......not enough doctors! So the wait time to see any specialist is at least six months.....and usually longer. Sad!

I am still worrying about something that happened last Friday. Jim had a medical appointment in Picton at 10am, after which we were going to Belleville for some shopping and Chinese Buffet. I had decided I would sit in the van with my coffee and Brain Age Game while Jim was in for his appointment, rather than sitting in the waiting room. Again that feeling of vulnerability pops up when faced with a strange environment on my own. So I was quite happily enjoying my coffee and game, when a man appeared at my van window. This rather startled me....and in my confusion, I couldn’t figure out how to open the window, so I opened the door. He said I had to turn off the van. I asked why....and he said they were protecting the environment, and please shut the van off. So I turned off the van, and he walked away into the medical center. Now it was probably about 20F at the time.....and it really didn’t take very long before I was feeling cool around the edges. I sat there wondering if I should in fact make my way into the hospital (and I didn’t have my walker with me), and if I would find someplace quiet to sit, and if Jim would find me. I was very close to tears when Jim appeared through the sleet that was then pelting the van. I’m afraid I ranted on at Jim about the nerve of this man.....how dare he tell me to turn my van off when he didn’t know my circumstances! Mainly I was scared to death that in my confusion I had opened my door to a strange man and that I felt too scared to go by myself into the hospital where it was warm. So three days later this is still bothering me......this feeling of vulnerability! I definitely have to work on coming to grips with this!

I’ve been drinking two glasses of apple juice a day....to help me sleep through the night. Well, I discovered each 8 oz glass of apple juice is about 120 calories......so there is 240 calories.....in my two glasses of apple juice. Not very good when I’m trying to shrink everything below my head, right? So, yesterday, I only drank one glass of apple juice......and was awake every hour on the hour all night long. Now that wouldn’t be bad, in itself, except then I had to lie awake and feel my poor legs burning away. I’ve been riding my exercise bike now faithfully, almost every day, since seeing the neurologist. I'm trying to grow some more neutrons (oops...actually neurons) in my brain. The only problem is, the muscles down the backs and sides of my legs start burning as soon as I start riding. And my balance problems seem to be getting worse, the more I exercise my legs. Maybe I’m destined to have a shrunken brain and a fat body! Oh well....my cinnamon pills should be arriving any day....and I’ll be healthy and full of spice!

Over twenty years ago I read in the Prevention Magazine that Vitamin B50 helped reduce stress.

Working full time, as well as Mom to five teenage sons.....I really needed some help! I have been amazed over the years how well they have kept me going. Several times over the years I had run out....and within three days, I could notice a big difference.

A year ago I realized the B50 Complex wasn’t handling things as well.....I was indeed having some troubles with my emotions.....crying for no apparent reason, etc. So I’ve increased my B50 to two a day.....so I’m now getting 100mg of all the essential B vitamins.

I’ve copied this little article about B vitamins for your information:

B vitamins are water soluble, and are dispersed throughout the body and must be replenished daily with any excess excreted in the urine. The B vitamins work together to deliver a number of health benefits to the body. B vitamins have been shown to: Improve metabolism; Maintain healthy skin and muscle tone; Enhance immune and nervous system function; Promote cell growth and division — including that of the red blood cells that help prevent anemia. Together, they also help combat the symptoms and causes of stress, depression, and cardiovascular disease.

I talk about it so much in the chat room, that quite a few caregivers are now taking them as well....and they are saying B50 is really helping them too!

We had a great visit to Dr. Black, my neurologist in Toronto yesterday. I again scored 30 out of 30 on the MMSE testing......Dr. Black and her resident are very impressed with how well I’m doing, and very interested to hear how active I’m keeping my brain by chatting to people all day long in the chat room. Dr. Black is ordering another MRI and SPECT.....she wants to see what changes there have been in the brain over the past year and a half.

Oh yes.....one other thing Dr. Black said. Research is showing that exercise is helping the brains grow new cells. For the first time, scientists have found something that not only halts the brain shrinkage, especially in regions responsible for memory and higher cognition, but actually reverses it: aerobic exercise. As little as three hours a week of brisk walking apparently increases blood flow to the brain and triggers biochemical changes that increase production of new brain neurons.

Soooooo.....looks like Jim has been put in charge of my aerobic exercise. We’re digging out my recumbent exercise bike from it’s storage....and getting my brain bigger! Would sure be nice if parts of the body below the brain got smaller as well!

For months and months, I’ve been having trouble sleeping. I would sleep for two hours, then wake every hour after that, all night long. I have tried various solutions.....no coffee, only coffee in morning, no nightcaps, lots of nightcaps, no meat, lots of meat......nothing seemed to let me sleep through the night. I was indeed wondering if I was going to have to resort to some sleeping aid, as I hear others in chat speaking about. Then one day in chat one lady mentioned she boiled an apple, and drank the water....and is sleeping through the night. Wow.......such a simple remedy?

But.....why bother boiling an apple everyday....why not try APPLE JUICE? So for the past week, I’ve been drinking two glasses of apple juice every afternoon.....and voila......I’m sleeping through the night. Oh, I still have to have a bathroom break......which is fine.......but I’m not awake every hour on the hour....looking to see if it’s time to get up yet!

So I’m changing the old saying...an apple a day keeps the doctor away.....to TWO GLASSES OF APPLE JUICE A DAY lets you sleep like a baby!

My 29 decibel rated earmuffs worked extremely well on our 2.5 hour trip to and from Toronto on Saturday, to visit Jim’s family. It cuts down on the input into my brain....leaving it much less confused. I found if I closed my eyes, it was even better. It put me in mind of being on a plane....there was no sense of speed.....and only the vibrations from the road.

This enabled me to have a much better visit with the family...and be able to join in conversations. I slept most of the trip home....with my earmuffs on of course. Sunday I spent most of the day sleeping, off and on....and wearing my earmuffs most of the time. Just couldn’t seem to get my head together at all.

We had our final FIRST STEPS training course yesterday. This is a program provided by the Alzheimers Society for people newly diagnosed with dementia. It leads you through the whole process from diagnosis, to coping strategies, and to advance care planning, with videos and information packages provided throughout. Barry Flanigan, the Education Coordinator for our chapter, did an excellent job.

It was a very informative session, and I think a great tool that all alzheimer offices should be utilizing. Our group will now continue meeting monthly, to give each other the ongoing support needed on this journey.

I also wanted to mention, I have added a new page here on my website......Lord Howe Island. When you have a few moments, you might like to read of my adventures visiting this lovely island in Australia in 2005, just before I was diagnosed.

Another lovely snowy day....a good day to sit and contemplate ....and enjoy life.

Well, the consensus is....hang onto my four remaining teeth as long as possible....which is what I’ll do......and thanks to everyone who sent me their thoughts on the subject!

Interesting results were also obtained with my experiment to limit the use of my Brain Age Game. Much less confusion is being experienced by doing just the brain test and a couple of brain exercises a day. I’ve allowed myself one Sudoku and one Tetris a day as well...and still no confusion. I’m also experiencing less noise sensitivity, so obviously these areas of the brain are related.

I am very relieved to find my confusion was something I can control. I was getting very concerned that I had started some sort of downward trend....and downward is not my desired direction at this point.

I have been having many sleepless nights worrying about a problem I’m having. I have four front teeth remaining in my mouth, and my dentist is suggesting we pull them all and have a full bottom denture, held in with two implants.

I have a partial denture at the moment that I can’t wear when I’m eating, no matter how much guck I’ve used to keep them in tightly. As soon as I take a bite of food, the muscles in my cheeks pull the dentures up and away from the gums...and the food is deposited immediately under the denture. So I remove the denture and carry on with my meal, using my four front teeth for chewing.

Another worry is the fact that for the past two years, I seem to take a very long time to heal. I had two teeth extracted at the end of last summer.....and the dentist couldn’t believe how long it took for the hole to fill and heal. Which makes me wonder if indeed I’ll have to go a full year with no teeth, before the implants have healed enough to fasten a new plate to?

Then what if we find the implants don’t hold the denture firmly into my mouth when I eat? Then I’ll have no teeth with which to enjoy my food!

Of course, there’s the added problem......I have dementia. As my brain becomes more involved, will I continually remove the denture that is bothering me.....again stuck with no teeth? Or will I maybe not know what is bothering me, and just become agitated all the time because I can’t tell anyone what is wrong?

I think I need to confer with some friends who work at nursing homes before I make my decision..... but right now........THE TEETH STAY!

Experiment No. 467 My life is made up of experiments....trying to find what works to make our journey a little easier. Right now I'm working on reducing the cotton balls in my head. On reading back through my journal, I can see where I'm noticing more confusion after we bought the Nintendo Brain Age Game. Each morning since mid-December, I would start off the day with the Brain Age Check tests, and then do the daily exercises. After that I would work the Sudoku games throughout the day. Once I finished all 100 Sudoku games, I moved to the Brain Age Two game, with more exercises, and a type of Tetris game, for relaxing with, plus another 100 Sudoku. So my experiment today....no Brain Age testing and exercises, and no Tetris.......and we'll see how the cotton balls are.

Had our Memory Walk yesterday! It went well, with our local Prince Edward chapter raising almost six thousand dollars I think. Still some donations to come in yet...so we'll see how it ends up. I was top walker, raising $1390...thanks to all my dear friends and family.

Jim and I walked around the hallways of the highschool.....then I sat and visited with others.

A friend in Buffalo thought up a slogan for me, and I had it taped to the front of my walker. It read: WALKING FOR DEMENTIA WITH LOVE, DETERMINATION AND PRIDE

I also wanted to pass on a link to an amazing story out of England....seems Sunderland University research has developed a way of making brain cells grow....and wearing this helmet giving off infra red light into the brain for 10 minutes a day for four months might completely reverse any signs of dementia. I'm sure it will be the latest head gear rage in the coming years! I want one for sure!

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=510172&in_page_id=1766&ito=1490

Many of the caregivers I’ve met in the chatroom over the past two years have mentioned that their loved ones follow them around all day, never wanting to let them out of their sight, often asking "What are you doing?". This seems to be a very common side effect of dementia.

I’ve noticed with myself over the past year that I experience a real sense of anxiety when Jim is gone away for more than two hours, when he’s off doing his cleaning jobs or out bike riding. Occasionally, when Jim has to go to town to do his cleaning job, I will ask him to drop me off at the local Giant Tiger department store for an hour. I can wander around there checking out sales, and pick up a few things. When Jim returns, he finds me, pays for my purchases and off we go.

But I’ve noticed when I’m off on my own like that, it seems very scary to me. This seems strange to me since I’ve always been such an independent person. This vulnerability is really hard to accept, but I guess as the disease progresses, and my brain function changes, I will become more and more dependent on Jim and my family.

Diane L. Christopher is a lady from Buffalo, NY who lost her dear Mother to Alzheimers last year. She has written a lovely article entitled "Alzheimers Disease…….What’s It Really Like?", and has kindly given me permission to share it with you. If you look on the Menu on the left hand side, you will see a page entitled Alzheimers Disease, where I have placed her article. I’m hoping Diane will start her own website where she can publish all her writings, and much more information that she has gathered. If she does, I will let you know where to find her. If she doesn’t, I will be publishing some of her articles here as she sends them to me.

Jim and I would like to also wish you all a very Happy New Year. I hope 2008 brings you all much love and joy.

MERRY CHRISTMAS AND HAPPY NEW YEAR

We spent two lovely days in Toronto, visiting with Jim’s family. Santa Claus dropped in to see us on his travels Christmas Eve, stopping long enough to have a game of Trouble with some of the kids, and nibble on some goodies, before he went on his merry way!

This was the first Christmas Jim and I have been able to spend with his folks, as in previous years our boys have all been home. Tomorrow we’re doing our Family Get-Together here.....with 28 of our family expected.

I managed really well today with 14 of us enjoying the Christmas Day together. I took the occasional brain break outside or in the den when I felt things were getting a little more than I could handle. My medications have sure made the world of difference for me.

Our dear Maria is home again, and little Quinn, pictured here, is overjoyed I’m sure to have her Mommy back home.

Well it is that time of year again......THE MEMORY WALK. I spent yesterday morning getting registered online. Seemed to take me longer this year to get it done properly.....and I get myself totally frustrated when I can’t seem to do it right! The harder I work at it, the more confused my brain becomes. It’s not too many years ago it would have taken me ten minutes......my goodness.....things do change eh?

If any of you would care to help find a cure for this disease, please click on the following link.

https://secure.supportthealzheimersociety.ca/ParticipantPage.aspx?PID=2055&L=2&CCID=24&GC=GTv2

Any support you can give would be much appreciated.

The projected number of people who will be diagnosed with alzheimers in the coming years is absolutely staggering. I know I’m meeting new people in chat nearly everyday, people in their forties, fifties and sixties.....diagnosed with some form of dementia. We need a cure so very badly!

Our lovely daughter in law Maria, pictured here with our son Gene, suffered a stroke this week and is in hospital recovering. She is having problems with speech and some confusion. Our prayers are definitely with Maria and Gene at this time and we wish her well on her road to recovery.

I spoke to Maria on the phone yesterday, and I could feel her frustration as she struggled to speak to me. It reminded me of how I was before my meds kicked in.....not being able to get the words together properly in my head, or completely losing track of what I was saying.

I think this was a wake-up call for all of us of how fragile our lives really are. It’s definitely time to "stop and smell the roses", enjoy each and every day, and love life!

I have been going to the chatroom daily at http://alzheimers.ning.com/chatroom.php. for nearly two years now. I have compiled a database of over 600 names of people I have met from around the world. When I get up each day, I get my coffee, check my email, and sign into the chatroom. I usually sit in the chatroom all day, only leaving to do my daily chores, and prepare meals. I listen for the DING DONG that indicates someone has entered the chatroom.

One of my friends I’ve met calls me THE GREETER. He says it’s so nice to know if he has a free moment as caregiver to his wife, that he can pop in to chat for a few minutes....that there is always someone there to chat to.

I just received a phone call from the Alzheimers Society of Ontario, asking if I would be interested in assisting with a new feature on their website. The page will be called Mary’s Blog....where people can write in comments or questions. I’m so happy to be able to assist with this project, and hopefully many people will find this a useful forum for sharing information. The Alzheimer Society of Ontario website is http://alzheimerontario.org/english/home/default.asp?s=1

Please check it out....and I'll keep you posted when Mary's Blog is up and running! Isn't life so fun?!!!

In talking to other people with dementia, it seems that worrying or having a strong feeling of anxiety is quite a common symptom that a lot of us are dealing with. This isn’t worrying about the future or any big thing.....this is worrying constantly about little things....things that don’t really matter. And the more we become fixated on the problem, the more confused our brains get. This confusion is accompanied by a feeling that our brains are swelling in our heads, like our head was going to explode. A friend I chat to all the time said he often has patients in the nursing home calling "Get the nurse quick....My head is swelling!" I can completely relate to that feeling.

I’ve added a new page here on my website....DEMENTIA DRUGS. I’ve included information on the latest research showing how the use of the cholinesterase inhibitors (aricept, exelon, and razadyne) combined with memantine HCL (namenda or ebixa) help persons with dementia think more clearly and perform daily activities more easily. These drugs are not a cure and do not stop the progression of the disease, but I can surely attest to the fact that they have brought me back to near normal.

I chat daily at http://alzheimers.ning.com/chatroom.php with people from around the world, some with alzheimers, and others with vascular dementia or frontotemporal dementia. Those of us using both of these drugs are doing much better than those not on the drugs, or on just the cholinesterase inhibitor (aricept, etc.). I get so sad and frustrated when I hear about someone not on these drugs, because their doctor didn’t recommend it....or said it wouldn’t help them.....or they weren’t bad enough yet to have it. It seems to me that every one of us deserves the chance to see if it might not help clear the confusion in our brains.

I remember when I asked my doctor to please put me on the memantine HCL (ebixa) which I had heard about in the chatroom, she said she had just taken two people off it because it hadn’t made any noticeable difference, but she would try me on it. I read later it could take up to twelve months to notice any improvement. Unfortunately a lot of people are expecting immediate results. I can just say that after 1 ½ years on aricept and 16 months on ebixa, the results are fantastic.....and just keep getting better.

So if you, or anyone you know, has any form of dementia......please.......ask the doctor to try BOTH medications......life is indeed wonderful...and we all deserve the chance to embrace it to the fullest! They don’t work for everyone....but the quality of life can be so greatly improved, they are definitely worth a serious try.

We had a lovely surprise birthday party for our daughter in law Cindy this week.. I spent the day cooking the turkey and all the trimmings ......and just warmed them up when it was supper time. This worked really well, and I didn’t overload my brain.

Wednesday was our Alzheimers Society Directors meeting. Everyone was quite amazed that I arrived without my walker. Since my nightly leg cramps have mostly stopped, my balance has improved considerably....and I very seldom use my walker these days.

Today Jim and I went shopping for Christmas presents for grandkids .....we have ten grandkids and 3 foster grandkids.....so this was indeed a big event. I had my lists made up and knew what I was looking for at each store. I was having a little difficulty at Toys R Us finding what I wanted. I finally found a clerk......and my fuddled brain was able to ask for a Hannah game? "Oh, you must mean the Hannah Montana Girl Talk board game." Next I said "Ah.....Dora", and she led me to the Dora Explorer section. Thank heavens for knowledgeable sales clerks who can understand befuddled customers. My aricept and ebixa are still working well, cause I didn’t completely lose it at the store.

What a gorgeous Sunday morning we have. The sun is shining...and the temperature is slowly climbing up from it's 2C (34F) overnight low. Our pellet stove does a fine job keeping us warm and cozy. It's neat burning pellets of wood instead of the hassles of using logs.

We celebrated Seth's first birthday on Thursday.....and I even baked his birthday cake! He loved the experience of squeezing the delicious chocolate butter icing through his fingers before stuffing it into his mouth!

Saw our family doctor on Wednesday. He is referring me to an ear specialist to see if there is a reason for my ear being plugged for over a year. He also ordered blood tests to check my thyroid. I have been experiencing extreme sweating any time I exert myself.

I'm getting a little concerned about how my brain is acting in certain circumstances again. I'm experiencing the same almost frenzied activity in the stores that I used to experience before I started the medications. Jim may have to tie me down again!! Oh dear!!!!

I received an appointment letter today from Sunnybrook Hospital in Toronto, saying I have an appointment November 15^th for another EMG, and then a follow up appointment with Dr. Zinnman, the head of the ALS Clinic at Sunnybrook in February. So does this mean the blood tests or the spinal tap showed something pointing towards ALS? I have no idea.....and I guess I won’t know anything until February 2008. This is so unreal....having to be in limbo for four months! There is something terribly wrong with our health care system. You would think I could have had at least a phone call after they received the results of the tests.

In the meantime I’m enjoying almost pain-free nights......the nightly cramps have all but left me.....and I’m very thankful. I’m still getting the fasciculations and spasms in the daytime...but that’s just fine.

We had a delightful visit with Jim’s family in Toronto on Saturday. I realize after visiting family like that, that my personality is slowly disappearing. I really struggle just with regular conversations.......trying to take in what is being said, and replying appropriately.

We’re now almost settled in our new apartment. It’s taking me a long time to get us organized....but it’s coming. Gone are the days when I could have a move completed in two days.

We love living next door to Dave, Cindy and the kids. I’ve been able to help out by looking after little Seth from time to time. I find I’m good for about one hour before this one year old’s activities completely frazzle my brain. I think after one hour I’m not a good care giver...cause it doesn’t register what he is up to, and my reaction time is slowed. Good thing we have Jim to look after us both!

Our dear friend Jane McLeod passed away yesterday with colon cancer. We first met dear Jane back in 2001....when we moved back to Picton, and she became our neighbour. Jane and I both had the feeling from our first meeting, that we were destined to meet, and love and enjoy each others company. We spent hours and hours playing our accordions together, or just having heart to heart talks. Everyone who met Jane loved her, and she will be sadly missed by many, many people.

Jane was very excited for us....moving into our Suite in our son’s house.....which we have now been doing for the past five days. We’ve moved everything from the storage shed...and from our summer trailer.....and we now have the ongoing task of trying to decide where everything should go. My brain gets completely boggled by times.....and I crash...but that’s OK.

In the midst of all of this, I gave an interview for an alumni magazine which the University of Toronto publishes. They wanted to do an article on how well the alzheimer’s medications are working for me. I hope this will be of help to many others.

We’re just back from our day at Sunnybrook in Toronto at the ALS Research Clinic, and again, no news to report. Dr. Zinman did order some more bloodwork including the test for Lyme Disease. He also had a spinal tap done, to see if there are any indicators in the spinal fluid of what is going on with my legs. He and his associate were both quite impressed at how well I’m doing on the aricept and ebixa.

We had a two hour lunch break while waiting for the spinal tap to be done.....and Jim was able to have an hour’s nap in the van. I even dozed off and on! It had taken us four hours to get to Toronto this morning....a trip we usually do in just over two hours. It was just pure volume....with stop and go traffic a good portion of the way. Coming home at 3pm wasn’t much better.....and took 3 and a half hours....so Jim is worn right out.

Tomorrow we're off to Dave's again....to help install the hardwood floor in our new apartment. We're getting very excited as our lovely little apartment comes together...and moving day looms ever closer!

Jim and I are feeling incredibly sad today. Our little Princess was having such bad health problems, including terrible incontinence, that we decided it was time to put her out of her misery. Princess was only seven years old, but had been having major health problems for two years now. She was a lovely member of our family, and we're going to miss her so much.

We decided yesterday to go on a camping trip to the Rideau River Provincial Park, near Ottawa, Ontario. The main purpose of this trip was to scout out the Ottawa Airport, where I fly out of next Wednesday on my way to visit our sons in Vancouver, and Barbie in Spanaway, Washington.

The Rideau River Provincial Park is a lovely campground....some sites right on the Rideau River. Our friend Jane came to visit us there, and have supper with us. The night was long and noisy....right next to the highway. Jim and I are so spoiled living in our quiet summer campground....with absolutely no noise!

We had an early start at 7:30 to head up to the airport. We were glad we did this tour of discovery....cause we got confused on one of the signs and had to turn around and go back....so I think we’ll be good on Wednesday, to get me to the airport.

My legs are still doing well....no cramping at all since I started drinking water and pineapple juice. The fasciculations and spasms don’t hurt, so that’s OK. The muscle burning comes and goes, so that’s OK too. And my head has been staying fairly unconfused. Sometimes things don’t compute...like this morning I opened my lipstick with the wrong hand...so I thought my lipstick had broken off at the other end....just silly little ‘brain’ things....but that’s OK too!

Today we went to the Alzheimers Canada office, where we were met by Mary Schulz, Senior Manager, Information, Support Services and Education. She introduced us to the rest of the staff at Alzheimers Canada. As well, we met Dave Fost and his wife, from Edmonton. Dave is the author of all the booklets and information on my Alzheimers Disease page here on my website. We had a lovely visit over lunch at the Pickle Barrel restaurant.

At 2pm we had my six month appointment with my neurologist, Dr. Black, at Sunnybrook Hospital. We finally emerged from that appointment at nearly six pm. There’s an old expression.....if the doctor makes you wait, it’s because he is doing the best job for everyone.....so we didn’t mind waiting in the least.

Dr. Black is now giving me a referral to the ALS Research Clinic at Sunnybrook Hospital, so we’ll be back up to Sunnybrook again in another month or two, to see if we can find out what is going on with my legs.

Had a marvelous two days celebrating my 63^rd birthday! On Sunday we had our annual Birthday Bash at son Dave’s. August 20^th is also our youngest son Ralph’s birthday....he was my birthday present on my 30^th birthday! What a present eh?

Yesterday Jim and I went to Kingston for Chinese Buffet and to look at 2004 Toyota Sienna Vans. We test drove one and were impressed. But I think we’re reconsidering buying one at this point. $20 thousand seems awfully steep, considering there really isn’t a thing wrong with our 98 Toyota Camry.....so guess we’ll hang onto our money for now.

I’m just amazed how well I’m doing with all the various activities. At the Birthday Bash there were 14 children and 9 adults....and I was able to function just fine! My meds are working so well!

I’ve increased my gabapentin to 1800mg/day now and still at 30mg of baclofen. This seems to be controlling the cramps in my legs....and I don’t have to jump out of bed 10 times a night...and do my little dance! I’m having increasing spasms in my legs and now my arms.....which is of concern.

We go to see Dr. Black tomorrow....so will see what she has to say at this point.

I’m getting very excited about my upcoming trip to Vancouver on September 12^th. I’ll also be spending a weekend with my dear friend Barbie down near Seattle, Washington....we chat daily about what we’re going to do with our short time together! So far the plan is eat chocolates and drink Bailey’s Irish Cream!

I have just returned from a most delightful trip to Ottawa...for a surprise 60^th birthday party for my brother Dave.

I took the train on Tuesday from Belleville, arriving 3 hours later in Ottawa, where my sister June picked me up at the train station. The ViaRail train crew are marvelous with anyone with a walker, and I was helped on and off the train at both ends.

I discovered the best way to use the ‘little girl’s room’ on the train is to wait until the train stops briefly at a station. I was able to make my way there without falling on someone’s knee, perform my bathroom duties, and get back safely to my seat.

Of course I was treated ROYALLY by my family in Ottawa. The surprise birthday party was very exciting, and we all enjoyed ourselves immensely.

We even did a bit of sightseeing.....and I saw the Prime Ministers home, and a few other highlights that tourists scramble to see when visiting the capital of Canada.

The picture shown above is actually an aerial photo that my brother Dave took of Ottawa, while he and his wife Margaret were in a hot air balloon last month for her birthday.

In my quest for information on ALS, I happened upon Mike Bougher, a man in his forties, who is living with ALS.

I was so impressed with Mike’s website, I wanted to share it with you. Here is a quadraplegic who has learned how to make life a fantastic experience.

Please visit his website at http://quadbliss.com/ I hope you enjoy Mike's website as much as I did.

We had a good appointment with our family doctor yesterday. He has given me a prescription for baclofen to try to stop the leg pains at night. I’m also to increase the gabapentin in another week or so, until we get the right mixture of drugs. The leg pains are muscle groups twitching or fasciculating, followed by spasms, then followed by major cramps, similar to Charlie horses. These cramps make me have to jump quickly out of bed to get them to stop. My feet will be turned sideways or my toes will be standing straight in the air. This of course leaves my leg muscles very sore and weak for most of the day. On days that I haven’t done much of anything, these pains start about 4am. On days where I’ve been active, this can start as early as midnight.....so it’s been a long time since I’ve had a full night’s sleep.

Dr. Seybold is still thinking ALS, or Lou Gehrig’s Disease, and I will be going for further testing. My next appointment with Dr. Black is August 22^nd. She is the head of neurology at Sunnybrook in Toronto, where they also have a large ALS research clinic, so I’m in good hands for sure.

We’re at the end of getting our house ready for it’s closing date of August 15^th. One more load of stuff to go to the storage locker and then the final cleaning. It’s really nice to be at the end of this process, and onto other interesting projects.

Seven more weeks and we’ll be moving into our lovely apartment in Dave and Cindy’s home. I can almost hear son Dave gasp when he reads seven weeks....cause he and Jordan have a lot to do before then! He he

There was a discussion on the FTD message board about how sounds seem to scare or startle persons with FTD. This has been a problem for me for the past year or so. For some reason my brain doesn’t recognize sounds, and sometimes I’m so startled, my heart pounds. Jim’s quite used to me asking worriedly "What’s that sound?"

He has changed the ring tone on the phone to play music as the ringing of the phone was startling me and I couldn’t recognize what it was. When my cell phone rings, most times the caller has to leave a message, because it takes me too long to figure out what the sound is and then answer my phone. I haven’t been able to figure out yet how to change it to music!

When Jim comes back from his bike ride, he usually rings the bell on his bike to tell me he’s back. For some reason, my brain cannot identify this, but Princess recognizes it immediately and starts barking excitedly. It takes me a couple of minutes to clue in.

On Thursday we had continuous heavy rain for about 4 hours. Living in a trailer for the summer means this is really loud. By 10am I told Jim we really had to get me out of the noise....and go and buy some heavy duty ear protectors, cause my brain felt like it was going to explode. We bought a $31 pair of ear muffs, with a decibel rating of 29. These are the kind designed to be worn when using noisy equipment. Well, they work marvelously for keeping my brain unclogged! I can even wear them when Jim wants to watch TV....and when I’ve had enough input. They seem to be working very well indeed.

It’s really amazing how many little tricks there are to making life easier for us all. Now if I could just program the microwave and bread maker so they didn’t beep at me, I’d be set!

Jim and I just had a lovely trip up to Georgian Bay, just over 200 miles away. We visited with some of Jim’s relatives, and stayed in a motel overnight. We saw so much beautiful scenery, and of course my camera remained nicely packed away in its case!

I’ve often said to Jim that I can’t seem to carry on a real conversation with people these days, and feel I’m just chattering away. That’s why I usually avoid having to speak to anyone. In my FTD support group, a speech therapist, who’s husband also has FTD was explaining this to us on the message board.

It is called ‘cocktail speech’. She says "The things that you say when using cocktail speech are more rote/automatic. They are things you can repeat off the top of your head, rather than something that requires thought. My husband is quite engaging while doing this and is not able to observe cues from the other person that they are done talking and want to move on. People with Wenick's aphasia have this symptom as well as many folks with frontal variant FTD."

This really helped me understand what is going on with me. I think at this point I’m able to present as "almost normal" to most people, because I am using the same phrases and conversations over and over again. I find if someone asks me a question, I can start off quite normally, answering the question, but then my brain loses track of where it is going, and I end up feeling like I’m rambling......and it tires my brain unbelievably.

Wow...very exciting news. We just got an offer on our winter mobile home. $45,000.00. We are very pleased. Looks like the closing date is August 15^th. We are selling it as a furnished unit, so there will only be boxes of our personal belongings to move to our son Dave’s apartment, where we will live until such time as the Senior’s apartment in Ottawa becomes available. We might just enjoy living with Dave and family so much, we will never want to move to Ottawa....who knows!

Now that we’re not having to spend all our free time over at the winter home doing cosmetic repairs, we will have more time for enjoying our summer here at the summer home....and do some more camping with our little Boler!

On Sunday Jim and I are meeting with the photographer from Alzheimers Ontario to do a three hour photo shoot. Alzheimers Ontario is doing up a new publication as well as putting some new pictures on their website. They want to take pictures of Jim and I on our tandem bike, with Princess in her bike trailer. This should be fun!

Jim had an 8am appointment at the Toyota dealer in Cobourg on Wednesday so we decided to spend Tuesday night at Presqu’ile Provincial Park, where I would remain in the morning while he drove the 30 miles to Cobourg.

We had a lovely site overlooking Lake Ontario....and had an enjoyable 6 mile bike road through the park. I spent most of the time swatting mosquitoes on Jim’s back while we rode. We spent the remainder of the day and evening in our Boler.....mosquito free! The trips to the outhouse were done very quickly.....swatting as we went!

At 5 this morning we were both wide awake...and Jim drove us over to the showers. I remembered to touch the metal sensor on the wall to get my water flowing! That was the shortest shower in history I’m sure.....the walls were lined with mosquitoes just waiting to attack all my body parts!

I spent the whole morning in my Boler playing on the computer...while Jim had the work done on the car. I had planned on doing a whole bunch of walking.....instead I sat inside watching mosquitoes trying to find me.

On our trip back home, as we came off the swing bridge over the Trent Canal, the lock opened holding the trailer onto the ball...and our little Boler came off and the tongue ran along the pavement until Jim could get us pulled onto the shoulder of the road. Fortunately we were going very slowly and no damage was done. I always wondered if those chains would actually work...and they did!

Since it takes awhile for my brain to recognize sounds, I hadn’t realized what had happened until Jim told me. Two young fellows working at the Trent Canal crossing came to our rescue and lifted the trailer back onto the ball...and Jim secured the lock with a bungie cord!

So...for our next trip....a better locking mechanism....and stronger mosquito repellant for sure!

Jim and I traveled up to Ottawa for the weekend....for a family reunion with his brothers and sister, at his brother Doug’s place. Doug lives about half an hour out of Ottawa and has made a huge park in his back yard, complete with a small pond. We just park our Boler trailer beside his pond....and enjoy the sights and sounds, and the visiting with the family. Then I have my quiet spot to retreat to when my brain has had enough input from the visiting.

The next day we had a most enjoyable lunch at my sister June’s with our brother Dave and his wife also joining us.

After that Jim and I headed off to Charleston Lake Provincial Campground, where we spent the rest of the evening and this morning. It was a beautiful campground...and we really wished we had our kayaks and tandem bike with us. We're planning on going back there next week....to really enjoy the lake!

One thing I’m noticing....I get extremely confused when in a new environment. Even going into a strange bathroom has become a challenge! Some bathrooms now have motion sensors to turn taps on or flush toilets. It's a real challenge to get my brain to try and figure these things out. This morning I went to have a shower at the campground. I got my shampoo and soap placed within easy reach, hung my clean clothes so I could just dry and get into them, and undressed, folding up my dirty clothing and placing it in the basket on my walker. Then I went to have a shower. I turned the handle up and down and around but I couldn't get the shower to work! I was so annoyed that there wasn't an Out of Order sign there warning everyone. I proceeded to get dressed in my clean clothes, without having a shower. Then I went into the ladies bathroom and washed my hair under the bathroom sink tap! When I explained to Jim that my shower didn’t work, he said there is a flat metal piece on the wall that you have you run your finger over. Then I was doubly frustrated....because that’s how I had to turn the taps on in the ladies bathroom....rub my finger over the metal piece. I hope I remember next time to turn the water on first....before I get undressed!

Yesterday was the Alzheimer’s Tag Day in Picton. Volunteers stand at various locations in town collecting money for Alzheimers. Jim and I again did our two hour stint in front of NoFrills grocery store. It was a beautiful, hot summer day...and a very busy spot to be. Last year we collected $83, and I’m thinking we may have surpassed that this year.

Two hours of greeting people seems to be more than my brain can handle these days. The fog definitely rolls into my brain. At one time I was pointing out to Jim that my walker brakes didn’t seem to be working, as one wheel kept rolling on me. He indicated to me the brake was in the up position, and not down in the locked position. In the fog, I was trying to lock it in the wrong position. Later in the day, after sleeping for two hours, I still had the feeling that my brain "was fried", and I just wanted to cry, it’s so frustrating.

I just may have to ask a son or grandson next year if they want to fill in for Mom/Grandma at the Tag Day!!!

In a forum I subscribe to Carole Mulliken often writes interesting information describing what’s it’s like to have dementia. I thought I’d share her latest offering with you.

"About being overwhelmed, if you think of a brain as being like a flashlight with a multi-celled battery, it helps. A flashlight can shine very brightly when all of its cells are charged and working. As cells lose their charges, the light gets gradually dimmer and dimmer, and the person using the flashlight sees (or understands) less and less of what is going on around him. It is the same way for me. I still have a potentially very bright mind, but as the number of neurons I can bring to a task diminishes, I can comprehend less and less of what is going on around me. You are correct in saying that we have good days and bad days. On good days, the neurons that remain communicate well with one another. On bad days, for some reason, they don't work so well together. Some researchers believe that the problem is debris clogging up the synapses.

Or, if you put our function in computer terms, my CPU cannot multi-task or co-process worth a darn any more. Too many tasks just bring me to a standstill and nothing happens. All true dementias are a result of the death of neurons. The limitations that people with dementia have are outside their control. I have not become "difficult" or "stubborn" by choice. Rather, I've lost the ability to be any other way.

I have come to realize that I often cut people off in the middle of their sentences when I have something to contribute. I do it because I know that if I wait until they are done, my own idea will have evaporated, so I have to throw it out while I still have it myself. It must seem very inconsiderate to others."

OK....off to charge my batteries some more!!!

We enjoyed a lovely Mother’s Day at son Dave’s. Sandy and his family were able to join us. Ralph and Lisa were tied up in Ottawa taking over Lisa’s new business venture, a Printwell store.

My family spoiled me as usual....I received new pants, shirt and jacket from Sandy and Sarah, and a new bike trailer from the rest of the family. Princess will be riding in style for sure...complete with a safety flag. I’ve actually biked 57 miles since May 1^st...not bad for an old girl I would think! We usually end up cycling down to Sandbanks Provincial Park, and through the campgrounds there, ending up at a nice spot for a picnic lunch...or just a coffee. Our insulated water bottles that came with our new bike work really well at keeping my coffee at just the right temperature!

We’re thinking all the cycling is helping my legs.....the backs of my legs aren’t hard knots of muscles....and I seem to be having less leg spasms at night...which is a major plus. I’m still having balance problems when walking....this seems to be the muscles down the sides of the legs not working to hold me upright. That’s OK....I have my Hummer...and I’m not slowing down yet!

My camera is acting up and I haven't been able to get a decent picture of our new bike and new trailer.....so I'm adding a picture the neighbour took of the borrowed bike from my brother and the borrowed trailer from our son!

What a busy week.....I’ve hardly had any time to spend chatting with my friends at http://www.alzheimers-dementia.net/ I’m afraid they’re going to think I’ve forgotten how to get there!

We’ve been so busy getting our winter mobile home ready to go on the market. All the regular cleaning of walls, floors, etc., then yesterday I got the big idea I should paint the kitchen cabinets. Of course Jim realized this wasn’t something I could tackle by myself, so he had to put all his outside fixing-up chores on hold, to help me. Our kitchen is being transformed into "baby blue", and I’m now thinking a new counter top and maybe new flooring next. Don’t tell Jim...I have to break it to him slowly!!!

We also spent Monday at the summer trailer, as Jim takes care of the lawn for four of our neighbours there. I busied myself with cutting up and removing the rug from the living room. We had planned on staying overnight there in our little Boler, but I got chilled enough at our campfire, we decided to head back home to our warm beds.

In between all this work, we’ve managed to do a tandem ride almost daily.... taking picnic lunches for our outings. It’s been great...and I’m sure getting lots of exercise. The gabapentin seems to be working well with the leg fasciculations and spasms. I did experience two painful nights and finally resorted to my Tylenol 3. It wasn’t leg pains....but pain and burning on whatever part of my body I was lying on. This is definitely something new and I hope doesn’t reoccur too often!

I must say I’m getting increasingly apprehensive of moving to the summer trailer...and leaving my "safe haven", here at the winter home. I’m not sure why this is....is it because there will be more people there I have to interact with? I know I have increasing difficulty conversing with people, trying to focus on what they are saying. I seem to have lost the ability to interact as I used to, which is very worrisome, as I used to be such a social person. Oh well....I’m doing so well otherwise, I won’t worry about this....people will get used to a Quiet Mary!

I’ve been having such an excellent week....I sometimes wonder if there is anything wrong with me! Until I get the occasional brain glitch...that is! He he

We had a great trip up to Ottawa on Saturday....and a lovely visit with my brother Dave and his wife Margaret. Our son Ralph and the two kidlings joined us at Dave’s for lunch...and we all had a great visit.

Dave loaned us their 6 speed tandem bike.....so we could use it for the summer....while they're busy moving to their new house. Ralph also brought us son Dave’s bike trailer that he has been using for the past couple of years. Thank goodness for our van trailer...to carry all these toys in!

So Sunday we proceeded to make trips around the circle of our mobile home park....making changes to the seats and handlebars as needed....then we added the bike trailer for Princess, to the mix...and proceeded with more circles. Princess yipped the whole way.....we're not sure if this is excitement or what it is.

Monday we did a 4 mile trip down to Sandbanks Provincial Park and back, without the trailer, getting used to the tandem. Tuesday we did a longer trip to the end of Sandbanks and back, so a total of 6 miles...and decided we really were going to be struggling with just 6 gears....this can be very painful on the hills.

Major decision time.....yes....we did it.....spent $1000 and bought a used tandem at the Bloomfield Bicycle Co. with 24 speeds. Of course they threw in new handlebars for me, water bottles, and pant clips. We also bought a mirror so I can see traffic from behind...and keep an eye on Princess.

So bright and early this morning we did the four miles to Sandbanks with Princess in the trailer...and had a walk on the beach. It was absolutely marvelous....and I’m anxious to go again this afternoon. Princess did some yipping along the way....but quieted right down when I told her we were going for a walk.

I have so much leg pain already...from who knows what...so I really can’t tell any difference from all the biking! At least now when the muscles are burning...there is a reason for it! I have an appointment with the neurologist in Kingston on May 29th. He specializes in neuromuscular diseases, so maybe we'll find out more then.

Still talking about our wonderful week in Vancouver....and Gene and Maria’s beautiful new home, and all the good food....and the beautiful sites! It was just fantastic.

Finally got my appointment with the neurologist who specializes in neuromuscular diseases...in Kingston on May 29^th. The gabapentin is working very well with the leg pains at night, and I’m actually getting some decent sleep. It will be very interesting to find out what is going wrong with my legs for sure.

I had my first experience on a tandem bike yesterday....and it was great. Jim rented a tandem bike from the Bloomfield Bicycle Shop for us to try. Yesterday we just did about two miles....which was about all my muscles would stand. We’ll give it another go today. My balance problems walking don’t seem to be a problem on the tandem bike, which is great. Jim has made some adjustments to the handlebars which should make it less of a strain on my arms. My brother Dave in Ottawa has offered us the use of their tandem bike for the summer, so we’re driving up there on Saturday with our trailer to pick it up. Son Ralph has also offered us the use of their ‘kid trailer’ that attaches to the bike, so Princess, our Bichon, can travel with us. I think this should be a really fun summer for us all!

Day Six of the Trip

After an almost sleepless night, checking the clock to make sure I didn’t oversleep, I was up and showering at 4am, to make sure we were ready for when Gene and Maria picked us up at 6:15 to get to the airport. We arrived right on time at the airport at 7am. Since I had printed out our boarding passes, we were able to bypass the long line of people waiting to get checked in, and just proceeded to the baggage check in. And since I had my walker, we were pre-boarded.....and missed that long lineup also. There are definitely some benefits to be disabled.

We had a good flight back to Toronto, arriving back at 3:30. The shuttle back to the hotel to get our car arrived at 4:20. That’s an excellent deal....free parking for the car for the week, and free shuttle. And then the three hour drive back to our place. Makes for a very long day for sure. We did arrive back to glorious 70F weather, which was a bonus.

The last three hours my legs hurt terribly...and I was really glad to be home. I slept off and on coming home...just trying to get my head back to normal. I could never have done this trip now without my aricept and ebixa, but I’m really glad we did it. And special thanks to Gene and Maria for making it so wonderful!

Day Five of the Trip

After our delicious continental breakfast we strolled over to Gene and Maria’s bright and early at 8am and printed out our boarding passes. I love this new computerized way of travelling.

We spent the morning at Ikea’s.....haven’t been to an Ikea for years and years. We just purchased 2 cutting boards and a teddy bear, while Gene and Maria found a great entertainment center for their livingroom, and many other articles for the house. Had a great lunch again at a Mongoli Grill....so good.

Then we did a tour of the VanDussen botanical garden....55 acres of garden in downtown Vancouver. Even walked through the maze of junipers.....without getting completely lost. We’re a month too early to be able to enjoy all the beautiful flowers.

After a two hour rest at the hotel, it was back to Maria’s Mom’s for another Italian dinner.....pasta with garlic and anchovies, followed by salmon steaks, shrimp in sauce, spinach, and Caesar salad. And of course several bottles of home made wine. It was so good.

Two more sleeps till we leave for Toronto, and then fly to Vancouver...and I’m so excited. Of course I have packed and re-packed several times. With our new set of luggage, it’s really hard to decide which of the five pieces I want to take.

Went to see the family doctor yesterday, and finally got some medication for the leg and arm muscle pain. I have a prescription for Tylenol 3 and Gabapentin.

I took one of each last night....and slept through the night...painfree.....first time in eight months. I am very happy, to say the least. So I will be using the Tylenol 3 as a last resort....if the gabapentin isn’t handling things.

I am also being referred to a neurologist in Peterborough who specializes in neuromuscular problems to find out what is going on. The waiting time to see this specialist is usually about six weeks, so that’s fine.

I find myself feeling very lethargic today, and this could be a side effect from the gabapentin, but we’ll see how it goes as my body gets used to it. I have started off with one 300mg dose, adding a second one today, and starting tomorrow I will take 300mg morning, noon and night. I was horrified to read....one of the side effects of gabapentin could be WEIGHT GAIN. Ahhhhh.....the story of my life!

HAPPY EASTER MONDAY

We had a perfectly lovely day at son Dave’s yesterday for our family get-together. Sandy and Ralph and families joined us....so 17 in all. It was so good to see everyone...and the little ones were all so good. Cindy and girls as usual supplied us with more food than is good for anyone to consume in a day....but that’s the fun of family get-togethers.

I did very well....thanks to my aricept and ebixa. I found at times I couldn’t concentrate on what people were saying to me, and had to ask them to repeat it....or just pretended I understood what they were saying. I have gotten very good at pretending this past year! (Oops...my secret is out!)

I really do miss being able to join in the conversations going on around me, as I used to do. I know I’m missing so much, as I’m now only able to concentrate on one voice or conversation at a time.

I also noticed after a couple of hours, I seemed to again go back to my ‘tunnel vision’...where my brain could only process what I was looking at, at the moment. So I was completely unaware of any activities around me, except what I was focusing on. I remember making my way to the bathroom, and thinking afterwards.....I have no idea who was in any of the rooms I passed through, or what they were doing. My brain was completely focused on getting to the bathroom and back again.

That’s funny...when I think about it now.....this lady charging through the house with her walker, like she was off to the races. Oh my....life is fun.

We had a lovely trip up to Ottawa on Tuesday, about 3 hours from our place, to check out some seniors apartments and visit with our son Ralph and family. My sister June is moving to Ottawa next month, and she and I think it would be lovely for us all to live back in the same city. Our little brother David also lives in Ottawa, along with two of Jim’s brothers. So this might be an option for us in the next year. It’s always nice to have lots of family near by when there are health issues on the horizon.

No word yet on when my appointment is for the EMG and other neuro-muscular testing. I’ve been experiencing some new symptoms in my upper legs and arms during the daytime now.....a soreness and burning in the muscles....the same as you experience when you do some major activity your muscles aren’t used to. This would be OK...but I don’t do anything that would be exerting these muscles. It will be nice to find out what is going on for sure.

The countdown is on for our upcoming trip to Vancouver, British Columbia, to visit our two sons Lane and Gene and their families out there.....in fact...I’m down to eleven sleeps now. I have, of course, started packing....and repacking.....as we had to buy a new set of luggage as the result of one piece breaking on our Ottawa trip. We’re OK though...this is a 5 piece set...also in burgundy..and I have already crocheted the luggage markers and installed them on each piece, for easy identification at the airport. Life is indeed exciting!

OK....I seem to be having some major brain glitches here. I don’t think I’m liking this one little bit.

Yesterday...in my cofusion, I somehow took a morning dose of pills along with my supper dose of pills. I didn’t notice until after I took my bedtime pills....when of course I realized I had then had double the daily dose of aricept and three doses of ebixa (memantine) instead of the two. I don’t seem to have any ill effects from the overdose. I remember my legs and arms tingling and feeling very heavy as I fell into a deep sleep...and didn’t have leg pains all night. Now...is this maybe something we need to check into....could in fact my legs pains cease with more aricept or ebixa? I’ll be investigating that one for sure.

Also in my confusion yesterday, I managed, in my attempts to assist Cat in the administration of our new website, to block myself from getting into the chat room. I could go in as a guest, but not as myself. So I was practically in tears when I finally went to bed...not having been able to figure out how on earth to correct my mistake. Fortunately Cat was able to trick the program this morning, and get me reinstated....as myself. And I swore to Cat, I will never try to assist her in the chat room administration again.

I think as a result of all my attempts to rectify this problem last night, I managed to lose some other important files, because when I tried to download some pictures for Jim this morning from the camera, I'm getting an error message...some files cannot be found.

I’ve mentioned previously how with this disease I definitely have a one tracked mind...I can only focus on one thing at a time. Well, our son Ralph installed a new anti-virus program on my computer last evening...done remotely from his Ottawa home. That was great...and I do thank Ralph. However, now, with this new program, I get these boxes that keep popping up telling me I have new mail....and should I allow it to come to my mailbox. As well, I occasionally get a little red box....trying to tell me something...what, I have no idea...but I think if I click the wrong spot on that box....it deletes my email program. Yes, you guessed it....while busy on another website, this box has popped up...and I have clicked something that I really wish I hadn’t...because now I have no email program whatsoever.

And since Jim is away at the dentist, and Ralph seems to be busy at work....I am sitting here in tears feeling very sorry for myself indeed. I really think I need to have a nap...and start this day over for sure.

Remember I told you earlier about how happy I was I had discovered Baby Wipes? Well, no one thought to mention to me that maybe, just maybe, it wasn’t a good idea to flush these little gems down the toilet. Good thing I love camping, cause I now have a camping toilet in my bedroom! Poor Jim has spent hours and hours......using first our snake, then a rented heavy duty snake, and finally the plumber with his power snake. We lost count of the number of these nasty little wipes that they retrieved. We haven’t gotten the bill from the plumber yet either!

Now it seems that even though the plumber seems to have gotten the pipes cleared, he’s thinking the pipes have in fact settled...and we have a low spot...and that’s why our system isn’t draining well, and hasn’t done so since we bought this mobile home four years ago. So it’s looking very much like we have a major job ahead...digging down to the sewer line outside our mobile home......and replacing 45 feet of sewer line.

In the meantime.....Jim has caulked two pipes under the trailer that seemed to be parting company, and I do believe we are going to try to make do......throwing all tp and wipes in the garbage...until we have a thaw. Or....move really early to our summer trailer!

Carole had posted on another website the following, which I thought says it so well: The loss of brain power (brain cell death) is not about "getting grouchy, getting lazy, getting indifferent" or even personality changes. It is more about the death of areas of the brain that ordinarily allow a healthy person to be even-tempered, conscientious and industrious, loving and loyal. So no amount of chiding, threatening or pleading is going to bring back dead parts of the brain. As people with dementia, it is important to us that you remember that when we were healthy brains, we were good and loving people because that’s who our spirits still are.

Just another reminder.....the chatroom at the Fisher Center is a truly lovely place to meet other caregivers and people with dementia, and share problems and just get unstressed. Hope you’ll join us there soon..
http://www.alzinfo.org/community/alzheimers-chatrooms.asp

MAKING LIFE EASIER

When talking with my friends in chat the other day, they were mentioning that their loved ones are having more problems with carrying out everyday living tasks.

I thought I would pass along just a few things that Jim and I have discovered are working well for me, so that I can still be somewhat independent.

So far I’m managing my morning bathroom activities just fine. My earplugs sit on the counter beside the tub. The containers with liquid body soap, shampoo and conditioner are all labelled and on the tub surround shelves in the tub/shower. And my shower stool sits in the tub, all ready for me to go. I’ve discovered if I just go slow, I manage to do all the steps to get myself in, cleaned, and out again. Sometimes I get the steps mixed up...and get into the tub before I have the water running and at the right temperature....so then I just back out and start all over again. I am discovering I’m missing the last step of my morning activities...the one of brushing my teeth. Don’t know how that step is getting missed. We may have to incorporate that step in along with my pill taking reminders.

Now I’m a big coffee drinker...and Jim doesn’t drink coffee at all. So I don’t even bother perking coffee anymore...but just use instant. Well, we discovered we can pre-mix instant coffee, whitener powder and my Twin Sugar in a plastic container. So one heaping tablespoon of mixture fills my cup. Jim keeps the thermos carafe full of boiling water all the time. So when I’m wanting a coffee, I have two steps......getting a scoop of the mixture...and pouring the water.

It seems the less time I have to spend trying to accomplish a small task, the less confused my head gets. And I do enjoy those precious moments with a clear head!

We had a lovely trip up to Toronto on Sunday to visit Jim’s folks, and sister Carly. We stopped along the way to visit son Sandy, wife Sarah, and daughters Hunter and Kennedy, at Bowmanville. I’ve added a picture of my two sweeties in their jammies on the Delicate family page further down on the website here. Our son Sandy turns 36 today...HAPPY BIRTHDAY SANDY! Jim’s family was doing fine...and we had a birthday party for Jim’s Mom, who is a young 83. It was good to see everyone again.

Over the months in chat at http://www.alzinfo.org/community/alzheimers-chatrooms.asp, a few of my caregiver friends have mentioned that when they wake their wives with alzheimers up, they seem to have more problems than if they leave them sleeping until they wake up naturally. I definitely experienced this myself on Sunday. Since we had planned on leaving at 7am to do our trip to Toronto, I had asked Jim to make sure I was awake and up at 6am, so I would have time to wash and curl my hair.

Well, he did wake me at 6am, as I asked....and I must say....it definitely took several hours for my brain to come fully awake. I felt rather like a zombie as I tried to get myself ready for the trip. I definitely had more confusion than when I wake on my own. I can’t imagine that driving for two hours with an almost mute zombie was much fun for Jim either!

I think after this, we won’t plan a definite time to leave....rather we’ll let me wake up when my brain is ready, and we’ll phone folks when we’re leaving. This should work well for us, as I’m usually an early riser anyways.

SPEAKING DIFFICULTIES

Our daughter in law Lisa was down from Ottawa on Sunday with the two grandkids as well as her brothers two kids....visiting at our son Dave’s. Dave and Cindy have two kids...as well as 3 foster kids. Jim dropped me off to visit with them all, while he went to do his office cleaning jobs. It was great to see everyone...and get caught up on all the latest happenings.

I guess I’m so used to Jim being with me and helping me along with my conversations. I found it quite a struggle by times as my brain refused to produce the appropriate words. It seems the harder I struggle to get the word I’m grasping for, the more confused I get. My head starts feeling very large, and my frustration level increases tremendously.

I can certainly understand when caregivers say their loved ones don’t speak much. The alternative is not a pleasant experience for sure. So if you see me struggling....please help!

CONFUSION

I’ve just experienced about three hours of major head confusion. It seems to have started while I was preparing lunch. Jim was watching a loud video on his computer in the living room....which is attached to the kitchen. I should have just gone and got my earplugs.... but I really didn’t realize what was happening to me.

When I’m confused like this I tend to laugh a lot...at nothing....and talk a lot....about nothing. I really hate it when I’m like this. It makes me feel stupid.

I’ve found before when the confusion hits, if I just sit quietly for an hour or so, the confusion goes away. However, Jim suggested we go shopping...and I really hate to miss out on any shopping expedition....so off we went. I hadn’t told Jim about my confusion....because I didn’t want him feeling badly about the noise....and it was my own fault for not grabbing the ear plugs.

I think I managed to behave fairly well in the stores, because Jim didn’t drag me out....so guess I had things under control.

So I’m making a mental note to myself GRAB YOUR EARPLUGS SILLY!!!

And if you notice I’m laughing or talking a lot.....stick my ear plugs in, would you please?

DECISIONS....DECISIONS.....DECISIONS

Apparently one of the things you lose when your executive functioning goes is the ability to make a decision. This has not been a big problem for me so far.....I just let Jim decide most things.

It used to take me ages to get dressed every morning. I would sit on the bed and survey the line of clothes hanging in the closet. I would take down a blouse, then put it back, take down another one and so on. The same with the slacks. Well, thanks to an idea passed on from a caregiver in chat, I no longer have to deal with this situation daily.

I have four outfits......slacks with matching tops. Each outfit is hanging on a clothes hanger. I have the four outfits at one end of the closet. So each morning I just take down one clothes hanger, usually the one at the end of the closet. So no decisions are required....and I can get dressed as fast as the best of us. If I haven’t messed up that outfit by nighttime, I can actually wear it another day....so it gets hung back up in the closet where it came from....at the outside end. And on laundry day, the same outfits get hung back in the closet on their hanger ready to go. The socks are no problem....I just grab the first pair in the drawer.....and same with undies. So I still look fairly well put together.....and in record time also.

Now...when it comes to special occasions...that’s different....then I have to sit and ponder my closet again....and get Jim to decide what on earth I’m to wear!

I just made the most fantastic discovery...and I can’t think why I haven’t tried this before! I know the thought has crossed my mind.

Yesterday in chat a CNA who works in an AD unit in Tennessee asked why people with dementia are scared of water. I tried to explain...it’s not a fear of the water...it’s the extra input to our brain from the water hitting our skin and the noise of the shower. Having a shower becomes a really big issue in our lives.....and something to be avoided.

Well...today.....experiment number 160207....he he....I wore my 33 decibel earplugs in the shower. That’s the first shower I have actually enjoyed in over a year! I even took the time to use the back scrubber on my back. It wasn’t the usual rush job just to get me in and out!

Now I do have a chair in the shower....which I’ve been using for the five months or so.... and this lets me sit away from the direct onslaught of the water...which has been helping. But the earplugs make the most difference. I am quite amazed...and delighted...and just wanted to share this exciting news with you all!! I would have included a photo...but this is, afterall, a family website!

Now the earplugs I use are about $2.00 for a package of 12...and they are bright orange and are actually washable. The CNA did report back that they worked very well at the nursing home, along with lowering the pressure of the water. Just one problem...when his back was turned, the resident ate them! So do keep an eye on them! LOL

DO NOT SWITCH YOUR MEDS

I mentioned back in January that Dr. Black was switching me from aricept to exelon, to see if it helped with an ongoing problem I’ve been having with my bowels.

For the past month I have been taking half the dose of aricept, which is 5mg a day, as well as 1.5mg of exelon both morning and night. I have experienced mild nausea, mild depression, mild confusion, and mild dizziness.....all of which I could have handled, knowing it would probably go away.

However, yesterday was day one of the second month of switch over, with no aricept...and 3mg of exelon twice daily. I had major nausea, major confusion, major dizziness and tight muscles all morning long after only the morning dose.

By lunch time when it had finally subsided some, I decided this was just not going to happen, and emailed Dr. Black’s assistant for advice.

He got back to me by 5pm telling me to quit exelon immediately, and start back on the aricept.

I am very relieved that I will hopefully soon have my happy life back.

Well this has been a fun filled week. On Monday morning I received a phone call from the TV station in Kingston, CKWS. They had read the newspaper article from the previous week, and wanted to help me get my message out. The reporter met me later that morning at the Alzheimer Society office, and did an interview which was aired on the 6 o’clock news. Hopefully all this publicity will bring more awareness as to the benefits of support for us all.

On Wednesday we did the one and half hour trip to Kingston for my six month check-up appointment with Dr. Garcia. Unfortunately, I had us there a day early. So we called that our practice run, and did it again on Thursday.

I won’t go into much detail of the doctor appointment, other than to say she was adamant that she is correct in her diagnosis of alzheimers, and sees no reason why I’m in a frontotemporal dementia research study in Toronto. She was not terribly happy with the neurologist switching me from aricept to excelon either. I somehow left with the feeling that I was a pawn in a power play between two doctors. She wouldn’t prescribe pain medication for me, even though she now admits I do have peripheral neuropathy. She said Dr. Black can take care of that in July, which I believe is still five months down the road?

Dr. Mitch Slutzky, a geriatric psychologist, attends our chats once a month, answering questions. I had asked him about the research I had heard of, indicating marijuana was proving most beneficial in improving cognition. He was very enthusiastic about it. And yet when I mentioned this to the doctor in Kingston she wouldn’t even discuss it.

So looks like I’m on my own again...doing my own research....and finding my own ways to make my new life a truly enjoyable one! (And I may have to fire one doctor!)

FIGHTING BACK....County woman rages against dementia

are the headlines of this week’s edition of The County Gazette.

You can view the whole story at:
http://www.napaneebeaver.com/pictongazette/localnews/localnews_feb2.html

Jason Parks did a wonderful job of getting my message across from my press conference earlier this week...and I do thank him for his help.

SUPPORT HELPS SUFFERERS LEARN TO LIVE WITH DEMENTIA

written by Bruce Bell of the County Weekly News also did a great article at:

http://www.countyweeklynews.ca/webapp/sitepages/content.asp?contentid=386540&catname=Local+Features&classif=News+%2D+Local

Kathleen of the Wellington Times was also doing coverage, unfortunately they don’t have a website, so I’m unable to share their coverage with you.

I just wanted to thank all three papers for bringing this important subject to the readers attention.

I hope our Alzheimers Society phone is ringing off the hook, as people realize the tremendous benefit to be found in the support that is being offered.

I had a terrific Memory Walk on Saturday. Princess and I walked around the hallway of the highschool ONE time, and raised ONE THOUSAND AND FIVE DOLLARS. I spent the rest of the afternoon visiting with other folks, as well as the Press. Thanks again to all of you for your help.

Yesterday our local Alzheimers Society had arranged a press conference for me. We’re trying to raise awareness of how important it is for persons diagnosed with dementia to keep their brains active, and how beneficial it is to interact with others with the disease There is no early stage support group in our County, because it seems I’m the only person in early stages who might benefit from a support group. Are all the other early stage people shut up in their homes waiting to die? I cannot emphasize enough how important it is to keep your brain active. The term USE IT OR LOSE IT applies here ten fold!

The support I’ve gotten talking to other people with dementia in the chat room at www.alzinfo.org had been truly amazing. No one can truly understand what we’re going through, unless they are also experiencing it. That desperate feeling of being alone disappears once you’ve talked to others with the disease. So I’m working very hard to get that message out to everyone. We need to find some way to get those diagnosed with dementia communicating with others with the disease, whether it be online, on the phone, or a local support group. You will see an amazing difference in how this disease is affecting them. They will learn new coping skills in how to manage day to day living with dementia. They will learn how to accept our changes and still enjoy life. They will learn THERE IS LIFE AFTER DIAGNOSIS!

Here we are into week two of Exelon.

A brief introduction into exelon:

Exelon is a type of medicine called a cholinesterase (COLE-in-NEST-er-aze) inhibitor. Cholinesterase inhibitors work by increasing the amount of available acetylcholine (uh-SEE-till-COLE-leen), an important chemical in the brain that is lower in people with Alzheimer's disease. Nerve cells in the brain need acetylcholine to send messages to each other. These chemical messages help a person do things like think, remember, reason, feel, and move.

Exelon can increase the amount of acetylcholine in the brain by stopping it from being broken down. This can help the nerve cells in the brain work better and may slow the progression of Alzheimer's disease symptoms, such as memory loss.

Dr. Black is making the switch from aricept to exelon....to see if it makes any changes to my stomach problems. I would like to mention that the depression that I seemed to be experiencing last week has thankfully gone back to its corner...and life is good again. I’m still experiencing more than my normal confusion, but that’s OK too.....my Mother always said I had a screw loose.

This Saturday is My Memory Walk, raising funds for Alzheimers research. I'm only up to $780 so far, so any of you who have forgotten you were going to help me out in this.....YOU ONLY HAVE THREE DAYS LEFT!!!

Click on this link :
https://secure.supportthealzheimersociety.ca/ParticipantPage.aspx?PID=75&L=2&CCID=21&GC=GTv2
then click on Donate up at the right top.


And I do thank all my dear friends and family for all their support!

FOR SALE.....CHEAP....ONE USED BRAIN!

Oh my...I am struggling here. I mentioned in my last posting that Dr. Black is switching me from my drug aricept to another similar drug called exelon, mainly to see if it relieves the gastro problems. So starting Saturday, I went from 10 mg of aricept down to 5 mg of aricept, and added 1.5 mg of exelon twice a day. This will take one month, at which time I will quit the aricept completely, and increase the exelon to 3mg twice a day for a month, before increasing to 4.5mg twice a day.

I am back to a confused head most of the time.....and the depression is unreal. Poor Jim has had to listen to my ranting and ravings for the last couple of days...and usually goes for a snooze to get away from me. And I used to be such a nice person!

I’ve emailed a fellow traveler from my chat group....who had mentioned all of the folks in his early stage support group in California have now switched to exelon. I’m anxiously awaiting his reply.....to see how bad this is going to get before it gets better!

I really could live with the daily diarrhea you know....I had the diaper rash under control just fine!

On a happier note.....we’re planning a trip to Toronto on Saturday to visit with Jim’s folks and sister Carly. It will be lovely to see them again.