Diary

Retrieved after simplesite problems

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.

A LZHERISM:

(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!"

Happy Birthday to our son Gene!

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.

We’re still non-smokers, and I’ve titrated back onto my Aricept.  The lack of Aricept certainly did a number on me…..and I’m hopeful that I will eventually get back to where I was before.  Going without aricept didn't improve my leg conditions at all, but I have found using my walker seems to lessen the burning legs at night.  It's nice when something seems to work eh?

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 ScarlettHeights, 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.

I even installed Skype….so anytime I find a wireless connection, I can phone whomever I want as well.I wonder if all libraries have free internet connection while sitting outside in your car, or is that just in the small towns around me?

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.

Jim is spending the day at the winter house, doing his 'professional cleaner' finishing touches....shampooing the furniture and washing the windows. He said I had to stay home and give my legs a rest!

So I've been spent the day puttering.... revamping my website and baking bread. I decided to give the trailer a good vacuum also. It took me ten minutes to figure out why the cat fur was going in one end and out the other end, back onto the rug. It seems the last person to use the vacuum hadn't attached the hose properly....do you suppose that was me?

I've added a new page here.....talking about the use of Vitamin E to keep us percolating longer!!! I think I'm going to double up on my dosage!!!

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.