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.

Joan Gershman has a really great website that I visit often : 

http://www.thealzheimerspouse.com

This week she shared an article written for her by a man living with alzheimers.  Click on the link above and scroll down to:

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

Extended treatment with Alzheimer’s disease drugs can significantly slow the rate at which the disorder advances, and combination therapy with two different classes of drugs is even better at helping patients maintain their ability to perform daily activities.  Results from the first long-term study of the real-world use of Alzheimer’s drugs, published by researchers from Massachusetts GeneralHospital in the July/September issue of Alzheimer Disease and Associated Disorders, support a level of effectiveness that may not be immediately apparent to patients or their family members.

You can read the full article here:

http://www.massgeneral.org/news/PRPreview.aspx?PageID=79

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 of  Dave’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!

This week has really been dragging by.  I’m trying to get over a summer cold……and I think I’ve just about got it beat.  It’s rather a breeze having a cold when you’re retired I think, cause you can just go and sleep whenever you feel sleepy.  One thing I found out….don’t take an Allegra-D decongestant before you go to bed!  It keeps you wide awake all night long! 

I’m still spending hours at pogo.com each day.  I learned how to play gin this week, and I’m working on Dominoes now.  I find if I read the “How to Play” instructions over several times, then go try the game against the computer, then go back and read the instructions again, that I’m slowly getting the hang of the new games.  I’ve even completed the two weekly badges Pogo offers each week.  Mind you, my friend Kathy who cares for her mother in law in MASS, has had to help me with a few of them.  I’ll definitely be asking her to do my euchre badge this week.  Heck, I couldn’t master euchre when I had a normal brain!

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!

I just wanted to share this article a friend from the chatroom wrote.

There are ALL kinds of books that have been written clinically and scientifically from professionals of all walks of life about dementia. These books profoundly state what the symptoms are? How old you HAVE to be to be diagnosed. Books that describe the different stages. Books that tell about the different medications that are available to treat the symptoms of the disease. These books also tell us how we should treat our loved ones with dementia, how we should take care of them, what we should do, what we shouldn't do. The books also tell us how we should feed them, what we should feed them, how we should dress them and keep them potty trained, what type of a routine they need to be on, how to keep them awake during the daytime, how to make them sleep at night. These books even tell us how to keep your loved one happy and active, when to get your POA and Guardianship papers drawn up. These books give all of these answers and more but these books do not tell HOW OUR LOVED ONES WANT TO BE TREATED only what they think should be. What they are forgetting is that one day they could be this person with dementia and then would they want all of these demands put upon them? Probably not.

The answers that are not in the book are the important things such as, if we are in the final stages and do not want to eat, do not force feed us. Don't grind our meat up to look like something that the cat just spit up. Would you want it? probably not.

Don't force us take our clothes off and take a shower, but be patient and treat us with dignity and respect. Help us to bathe from our chair, help us brush our teeth or our gums and to put on clean clothes, but please don't scold us for a fear of the unknown.

Don't force us to get up in the morning, help us turn from one side to another to keep our skin healthy. Open the curtains to let the sunshine in, read us a story or just sit and talk with us. Remember, we are still human.

Don't force us to go places that we no longer remember. Show us a picture and tell us about this long forgotten place and maybe, just maybe, we will decide on our own to go with you, but if we don't, don't be angry, remember that you were that way many years ago.

Don't force us to go to bed, tell us that it is time. Help us change into our night clothes, dim the lights, turn some music on from our day years ago, soft and low and sit near us, let us know once again that we are not alone.

Encourage us to take our medicine. There will come a time that no matter what we take, the medicine will no longer work and the disease will have won its battle with us. Don't yell at us or curse at us, remember we have fought long and hard, now we just need to rest at our own pace not at the pace of medical technology.

These are some of the answers that you won't find in a book but only from the eyes and heart of a person with dementia.

Tracy

__________________
Tracy Mobley
Diagnosed AD/FTD, now age 43
Camp Building Bridges
www.freewebs.com/younghope2007/
Young Hope The Broken Road
www.amazon.com

Happy June....summer is almost here.  After some much needed rain Jim was out dancing on his Toro 4200 today.

We made a note to ourselves.....we need to remember to schedule our various trips and excursions with a break in between.  With the trip up to meet Ralph on Saturday to pick up my laptop, the trip to Toronto Sunday to visit Jim's family, and the dentist on Monday to have that silly loose tooth pulled.....I had a complete 'brain dead' day Monday.  My gosh, I couldn't even play Pogo....and that's my main brain exercise these days.

I decided to take a break from the alztalk chatroom, where I've been sitting for the last two and a half years, visiting with people from around the world.  I think I've burned myself out. 

Anyway...on to happier things to keep my brain exercised.  I keep reading that exercising the brain is making new paths through the mess upstairs...and I'm sure its working! 

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!

I wanted to share this article written by Richard Taylor.  He has been living with the diagnosis of Dementia of the Alzheimer's Type (DAT) for almost five years.

AD Diagnosis Should Mean "Hello" Not "Good-bye"

It is always startling to me when someone I know, even if only through some make believe roles in make believe movies, dies and has been prior to her/his death living with a diagnosis of Dementia , probably of this or that type.

Someone found the press release Mr. Heston read announcing his diagnosis, and I just read it. Reading Charleton Heston's announcement that he had been diagnosed with Alzheimer's disease reconfirms for me that many, too many individuals, even those diagnosed with the disease see the diagnosis as the start of a long good bye.

We announce and prepare ourselves and others to the fact that we have already started to fade away. It started the moment someone in a white coat told us "You have Dementia, probably of this or that type, and certainly with these features." I'm on my way out! It's all downhill from here! Don't look for me anymore; I'm going to be busy fading away and not being me.

We are seldom seen by others post diagnosis. We seldom speak up or speak out post diagnosis. After all we are fading away. What could we have worthwhile to say? Could we possible grow as a human being after we have been diagnosed? We become someone we would be embarrassed to be were we capable of appreciating who we had become!

Are we? Will be embarrassed for ourselves? Who is embarrassed for whom? How do you know I'm not accepting, perhaps even contented with who I amtoday. Even if I'm sometimes frustrated. Even if I'm sometimes agitated. I'm still me!

Isn't it time others who don't live with the diagnosis focus their energies on understanding, appreciating, supporting, enabling those of us who do live with diagnosis? Don't concentrate on who we were? Don't try to convince us we should hang on to yesterday, or last year, or fifty years ago – when we are struggling to understand today.!?

Wouldn't it be easier to love someone we believed was a whole person, instead of someone half empty? Instead of someone who is literally a shell of who they were?

Is it any wonder people find us hard to love when they find us so hard to understand? to appreciate for who we are? to accept our changes, our symptoms, our forgetting and confusion. Of course it is. Some people with dementia and many caregivers keep saying good-bye. I, and I honestly believe every other person living with and in dementia need to hear, feel, and be supported by saying "Hello!"

This is not an issue just for those in the late stage of the disease, nor just for those in the mid stage of the disease. It starts the day the diagnosis is pronounced. Collectively, and individually we need to find the courage, the support, the understanding to say hello to ourselves and each other.

Every day! Every day! It's that simple! It's that easy! Reduce stress, increase love you give and receive, enjoy and live in today.

"Hello"

Richard

http://www.alznews.org/Library/InfoManage/Zoom.asp?FolderID=888&InfoID=4919&SessionID={F9AE1197-6A50-40EB-AD9D-2E8A6BDBB99A}&InfoGroup=Main&RLMsg=&SP=2

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 LakeOntario. 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 SunnybrookHospital.......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!

The forums and chatrooms are positively crackling with excitement over the news out of the research departments that cinnamon may be helping reverse alzheimers.

Researchers at the University of California, Santa Barbara have discovered an extract of common cinnamon that contains a class of small organic molecules that inhibit several key processes in Alzheimer's disease. The cinnamon extract inhibits the aggregation of tau and disassembles fibers that have already formed, suggesting that neurofibrillary tangles can possibly be reversed by these compounds. The extract exhibits potent inhibitory activity, is orally available, water-soluble, non-toxic, and the bioactive molecules are likely brain permeable. The extract is readily produced in large quantities and can be encapsulated in powder form for oral administration. These properties make the cinnamon extract a highly favorable substance for development into an effective therapeutic to slow or prevent Alzheimer's disease.


One lady in the forum said she has been giving her Mom the cinnamon tablets for six weeks with dramatic improvements in her memory and thought processes. 

We couldn't find the cinnamon extract locally, but I was able to order them online from a supplier in Manitoba, so I should be receiving them this week....and I will sure be keeping you posted on how they're working for me.

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

I am definitely experiencing some changes. My friend Marcus who works in a nursing home had told me some time ago that when any of their residents seem to be more confused than normal, they immediately test for Urinary Tract Infection. So I have been taking 4 cranberry capsules a day to make sure that isn’t my problem.

I’m wearing my ear muffs more now, blanking out the background noises which seem to affecting me. Jim was explaining something to me yesterday afternoon, and I told him afterwards, I had absolutely no idea what he was talking about.....the words just seemed to go into my head and sit there swirling around. I remember thinking at the time...hmmmm, I can’t find the shelf where I need to store this information. It was a really funny feeling!

My sensitivity to noise seems to be returning. Sometimes the sound of the TV makes my head almost scream.....and my brow starts twitching. I’m noticing the sound of the wood pellet stove blower when it’s running....and the fridge. Have you ever stopped to listen to all the background noise...and how loud it really is?

I have a pair of ear muffs, the kind you wear when operating heavy machinery, which I keep beside my chair. These work well at muffling all the sounds, and I’m starting to wear them more often again. I need to start carrying them with me in the car as well, I guess. The noise of the van driving down the road has become almost deafening.

The noise doesn’t just bother me as it does a normal person. It really increases the confusion in my brain. The cotton balls start filling up my brain, and I have difficulty processing my thoughts.

For awhile now I’ve been worried that my miracle drugs were losing some of their power, as I seem to be having more confusion.....but I’m thinking now it’s just the sensitivity to sound has returned. So we’ll see how I do wearing my fancy ear muffs most of the time.

Reversal Of Alzheimer's Symptoms Within Minutes In Human Study

An extraordinary new scientific study, which for the first time documents marked improvement in Alzheimer’s disease within minutes of administration of a therapeutic molecule, has just been published in the Journal of Neuroinflammation.

This is after an injection of Enbrel, a drug used already for other diseases such as arthritis and psoriasis.

While the article discusses one patient, many other patients with mild to severe Alzheimer’s received the treatment and all have shown sustained and marked improvement.

Here's the article about it

http://www.medicalnewstoday.com/articles/93508.php

Now I have to get busy and find out how we can get some of this......I'm thinking my arthritis is starting to really bother me, and I need that Enbrel!!!

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.

Our son Ralph just phoned from Ottawa to say he was just glancing through a magazine at a workplace he was visiting to do his job, when he came across an article about me!

Scott Anderson from the University of Toronto Magazine had come to interview me back in October, and his article "Untangling Alzheimers" is now published.  Scott did an amazing article, and we're very pleased with it.

http://www.magazine.utoronto.ca/08winter/alzheimers.asp

And today, our local Alzheimers Society is holding their first support group for persons in early stage  ...he he....thats me!.....with the presentation of the First Steps Education Series.  I'll be sharing more information with you on that later.

Here we are into our brand new year!  The Alzheimers Society of Ontario has a lovely, informative website, and for the past year or so have been doing a profile on various people in Ontario who have been affected in some way with Alzheimers.  This month LIKE MINDS is introducing me and my family to the world!  Isn't this so very exciting?  So if you wouldn't mind just clicking on this website:
http://alzheimerontario.org/english/home/default.asp?s=1

and seeing what a wonderful project they have going there. 

My Walking for Memories has hit a bit of a slump.....so if anyone has a bit of spare change hanging around after this festive season, please click on the following link and help me reach my goal for this years walk!  And thanks to so many of you who have already done so!
https://secure.supportthealzheimersociety.ca/ParticipantPage.aspx?PID=2055&L=2&CCID=24&GC=GTv2