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Friday, October 29, 2010

Aricept - Aricept and My Frontotemporal Dementia (bvFTD) - Maybe?

Aricept is not approved for bvFTD, but it seems to be helping me.

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD is different. Keep in mind as you read this that the person who wrote this has dementia. That would be ME.
Medical Disclaimer.

I did the research a few weeks ago, and I do not know which web site I copied the following information from. If you did not grow up in or around Cleveland, Ohio that would be:

 "... from which I copied the following information." We really do go out of our way to end sentences with prepositions, no matter where we are going to.

In any case, the following information is widely available on the net.

Medications with strong anticholinergic effects, such as antihistamines that cause drowsiness, are well known for causing acute cognitive impairment in individuals with dementia and may cause confusion and hallucinations. Furthermore, with the cholinergic deficit in some forms of dementia, they could potentiate this deficit and antagonize any cholinesterase inhibiting medications.

Cholinesterase Inhibitors:
These drugs have been approved by the FDA to treat mild to moderate Alzheimer’s Disease. The drugs in this class include donepezil (Aricept), approved in 1996; rivastigmine (Exelon), approved in 2000; and galantamine (approved in 2001 under the trade name Reminyl and renamed Razadyne in 2005).

Cholinesterase Inhibitors are designed to increase the level of acetylcholine in the brain. Acetylcholine is a chemical that helps to carry messages to other brain cells. It is important for memory, judgment, and thought. This class of medications may help with naming in primary progressive aphasia, but can worsen the social disorder of patients with FTD.

OK, I told you that, so I can tell you about this.

Aricept is not generally recommended for anyone who has bvFTD. It is only approved for Alzheimer's Disease, not Frontotemporal Dementia. The brain chemistry is very different between Alzheimer's Disease and Frontotemporal Dementia. Aricept is not approved for Pick's Disease (FTD). The reason it is not approved is because it can make behavioral and aggression problems much worse in those with FTD. So, the general wisdom at this time is: Do not take Aricept if you have bvFTD.

But every case of FTD is different, and my Neurologist agreed that I may benefit from taking Aricept. Surprise!

I have been taking Aricept (5 mg) now for about 6 weeks. The side effects are uncomfortable, but not insurmountable. Supposedly the side effects will go away within a couple months when my body gets accustomed to the medication. I hope so. After the horrific side effects I had taking Lexapro I am very cautious about taking any new medications.

The first week taking Aricept was easy with no real side effects at all. I thought I was going to be lucky, and not have any problems. I saw no benefits either.

The second week was not so very good. The most common side effects are gastrointestinal. Well, that is where some of them manifested themselves with me. I kept notes on my daily calendar, so I wouldn't accidentally forget something.

Around the beginning of the second week taking Aricept I started having pretty severe heartburn, and acid reflux. My indigestion was mainly at night when I was in bed. That is probably because of the position. It did not seem to matter what I ate. I know I had indigestion at night because another side effect of Aricept is insomnia. I frequently awake around 3 Am, but this was much worse. I was able to fall asleep, but was awake a couple hours later, and I was unable to fall back to sleep. I did not feel especially tired the next day, but I was only getting 3 or 4 hours of sleep a night. Of course, frequent urination is another common side effect, so I was awake anyway several times a night.

But wait! That's not all! I also had decreased appetite, and on a couple days all I had to eat were a few light snacks. I also had a feeling of being sorta "Fuzzy" in my thinking. It is hard to describe exactly, but it was somewhat like having one too many Rum & Cokes. It wasn't unpleasant, but it was noticeable. Along the same lines I had waves of intense nausea. It felt just like a mild hangover. The feeling of nausea came on suddenly, and did not last long. At least a couple friends commented that they noticed my "fuzzyness", so it was not just my imagination.

The beginning of the third week was about the same as the second. The insomnia and the indigestion were starting to become bothersome, but still manageable. The nausea was not as bad. I had a stuffy nose which may be due to the Aricept, or may just be allergies. No real way to tell the difference.

By the end of the third week I was ready to stop taking the Aricept altogether. I itched! Not just a little bit. One night it was the bottoms of my feet. I itched, and scratching didn't help. There was nothing there. No bug bite. No mites.  No rash. No redness. Nothing. Just an intense itching. It was the worst on my legs, and my arms, and my chest, and around my middle. I noticed it the most at night, but I itched all time.

Oh! Did I mention the muscle cramps? In the middle of the night, when I finally did manage to fall asleep, I would wake up with severe cramps in my legs, or my shoulders. Think "Charlie Horse!" I have even had cramps in the muscles of my hands. The cramps also started around week three. I never had a cramp in my shoulders before. That was a new experience.

I didn't notice it, but I also had slightly blurred vision. A couple days ago I walked outside to enjoy my morning coffee and a cigar under the guyzebo on the deck. The sun was shining, and all of the leaves on the trees looked sharp. The whole world looked sharp and clear. That was when I realized that my vision had been slightly blurred for the past couple of weeks. It was a subtle change, but it was noticeable when it was gone. The important part is that it is gone. My vision is no longer blurred - at least no more than it ever was.

So! About now you are probably thinking, "Why is he taking this crap?"

Simple. The benefits may outweigh the drawbacks. The light at the end of the tunnel is that with Aricept the side effects supposedly go away in 4 to 6 weeks. But it gets worse before it gets better.

Around week 4 I went on a vacation. I was way out in the wilds of Pennsylvania chasing Elk, and generally having a wonderful time. I took a few antihistamines because I had a stuffy nose. Again I wasn't sure if it was a side effect, or if it was allergies. I decided it was allergies because the antihistamines helped. I also noticed that when I took the antihistamines, I did not itch as much. Woo-Hoo! My friend also suggested I try a bath oil, and that helped immensely to relieve my itchiness.

By week 4 I still had a little insomnia, but most of the other side effects were gone, or reduced to a sporadic infrequent occurrence. All except for the itching! It was crazy. It seemed to move around. It was driving me crazy! On vacation, it was the back of my neck! Again, it was worse when I did not take an antihistamine.

When I got home my allergies were worse. It is the Hay Fever season in Ohio, and there is plenty of Ragweed around this year. Ragweed is evil! Of course, as always in the Fall, I started taking antihistamines on a regular basis. Just for the record - I have always had very good allergy control with Chlortrimaton, so that is what I usually take. Nothing like an old-school medication. The upside is that it is unlikely that it will be pulled off the market next week because it turns you into a lumpy green squash.

Did you read the part at the beginning of this post about dementia and antihistamines? Just in case you missed it here it is again:

Medications with strong anticholinergic effects, such as antihistamines that cause drowsiness, are well known for causing acute cognitive impairment in individuals with dementia and may cause confusion and hallucinations. Furthermore, with the cholinergic deficit in some forms of dementia, they could potentiate this deficit and antagonize any cholinesterase inhibiting medications.

Did you notice that Aricept is a Cholinesterase Inhibitor?

Recipe for disaster! Week five is missing. I wrote about it a little in another post on "Bad Days", but I really don't remember any details. I learned that it is a really bad idea to mix antihistamines with Aricept. Antihistamines alone may cause issues, but the two together can have severe effects. I guess I will have to suffer through allergy season, or maybe try some other medications.

I stopped taking the antihistamines. I got better. Now, it has been six weeks since I started taking Aricept. All of the side-effects have decreased, so that they are not an issue - except for one. I still itch! It is not as bad as it was, but it is still annoying. The bath oil is the biggest help. It is mostly on my chest, or the back of my neck - but it moves around.

(I am still working on this post, and it is now week 7 since I started taking Aricept. I think that I am finally over all of the side effects - even the itching. It was very difficult at times.)

After all that I have still not answered the question, "Why am I taking this crap?"

In a study of patients - very aged patients I might add - with Alzheimer's Disease - Aricept helped them perform everyday activities longer. Aricept may improve the symptoms of dementia, stabilize the symptoms of dementia, or slow the progression of the symptoms of dementia.

Again - Aricept is not approved for patients with Frontotemporal Dementia (FTD) - especially not for Behavioral Variant Frontotemporal Dementia (bvFTD, Pick's). Aricept is only approved for people with Alzheimer's Disease.

According to eHow: "Aricept improves the function of nerve cells by reducing the breakdown of acetylcholine. Acetylcholine sends messages to the nerve cells involved with the cognitive skills of memory, thinking, and reasoning. By reducing the breakdown of acetylcholine, the progression of symptoms slows. Because Aricept works differently in patients, some patients will show increased cognitive ability while others will not seem to show any change."

My explanation is that if you have bvFTD, and have behavior problems, Aricept will make 'em worse because it makes the brain work better and faster. It even makes the parts work better and faster which are causing the behavior problems. If the parts of the brain which are causing the problems work better the problems will get worse. Hence Aricept is not recommended for people with FTD. That is my own explanation of what is going on.

But... Aricept makes the brain work better.

Everything is a trade-off. Every case of FTD is different. In my case my neurologist and I both thought that Aricept might have more benefits than drawbacks. So far I will have to agree now that the side effects have mostly gone away.

My main behavioral symptoms do not seem to be any worse. I have not had any incidents of rage or uncontrolled anger since I started taking Aricept. I have not seemed any more aggressive. Other than the week I mixed Aricept and antihistamines I have not had any adverse dementia-related effects.

My neurologist hopes that Aricept will slow the progression of my symptoms. That is his reason for recommending it. It may, or may not, have an effect on the progression, but in his opinion if I can tolerate taking it, there is no downside.

I personally am hoping for more than that. I feel sharper in my thought processes. I think I have also seen some benefit to my working memory, and possibly attention. I have had 3 (count 'em! Three!) people tell me that they had noticed I seemed sharper the past couple of weeks, and 2 did not know I was taking a new medication.

As an example: I had a friend send me a cartoon about being a geek if you think doing math in hexadecimal is attractive to the ladies. Well - of course it is, but that isn't the point. The point is that there was a simple arithmetic problem, and I was able to do it in my head. Not just arithmetic, but hexadecimal arithmetic. That is more like my old self than I have felt in a long while.
(1A + 2B = 45 for the curious)

I played a game of Cribbage last evening, and was able to count the scores up in my head. I think that is a big improvement in my mental arithmetic ability.

I am going to try to continue taking the Aricept. My regular doctor agrees with my neurologist that it is worth trying if it seems to help. I will probably be increasing the dosage to 10 mg a day around the beginning of November. Hopefully I won't itch!

Maybe it is just a fluke, or maybe it is coincidence (if you believe in that sort of thing), but I am pretty sure right now that Aricept is having a beneficial effect. No way to tell if it is slowing the progression of my symptoms, but I can hope.

There is always hope.

Comments are welcome.

Sunday, October 24, 2010

A Fast Getaway From FTD

This big old Buck was a loner. Elk are BIG!
This herd was in a farm field about a half mile away. Nice leaves!
Heard Of The Eastern Elk Herd?

Elk are really, really big deer with ginormous antlers and fat white butts. Now ya know!

I notice that very few of the web sites about the Pennsylvania Elk mention that the current Elk population is a different subspecies. The Eastern Elk (Cervus canadensis canadiensis) became extinct in 1880 or so. The Elk that were reintroduced are from the Western Elk subspecies, which is smaller by a few hundred pounds. It is also believed that the Eastern Elk had more branches, or points, on their antlers.

There is some controversy over the classification of the Elk subspecies. DNA evidence strongly supports the argument for all Elk in the United States being the same Cervus canadensis canadiensis subspecies - the same as the supposedly extinct Eastern subspecies. The notion of different Elk subspecies allows for more latitude in getting funding for conservation efforts, so is likely more political than biological. As a side note, DNA evidence also indicates the European Red Deer is a totally separate species even though viable hybrids with Elk are common.

Though the Eastern Elk is reportedly extinct since the 1880's there are still reports of some possible surviving animals. These reports come from some remote areas of Michigan, and Ontario. There were also some animals exported to New Zealand, but those animals have reportedly interbred with Red Deer, and are no longer of a pure Elk bloodline.

Elk once lived throughout Pennsylvania. By the mid 1800s, their range was reduced to a small area in Elk County. The last native Pennsylvania eastern elk was killed near Ridgway, in 1867.
Hey look! I got the reflection of this female.

Between 1913 and 1926, the Pennsylvania Game Commission attempted to restore an elk herd by releasing 177 western elk. These relocated animals flourished so well that 98 antlered bulls were legally killed in open hunting seasons between 1923 and 1931. Because of a declining herd size, hunting of elk has been prohibited since 1932. A recent (1990's maybe?) survey indicated the herd size to be more than 600 animals, up from a low of only 35 animals in the early 1970s. The current elk range is in southwestern Cameron and southeastern Elk counties.

There are now just under a thousand Elk in Pennsylvania. All we had to do was find a few.

So, I had not really had a vacation this year. I wanted to get away for a few days. I enjoy the outdoors, and wanted to go someplace where I could enjoy some photography. My friend wanted to see some Autumn leaves in full color. (Why some people will drive miles to look at dying leaves escapes me.)  Upper Michigan, Indiana, and Southern Ohio were discussed. Somehow I remembered the Eastern Elk Herd of Pennsylvania, and that is where we ended up going. It was closer, had things to do, and was much less expensive.

We were planning to go a few weeks from now, but it worked out we went sooner and on very short notice. My friend arranged all the details. I would not have gone if I had to do it all myself. Planning, and doing stuff, are difficult for me. I had help not in just choosing a pet-friendly place to stay, and making the reservations, but creating a list of things for me to do and what to pack. It was actually a 4 page spreadsheet which included a weather report. I have never been THAT organized! I am not sure I would ever want to be that organized, but it sure worked out well. It made it much less stressful and easy for me to prepare for the trip.

I waited for this big ole Buck's silhouette. Antlers!

We took Kroozer, and he did very well. He is an easy-keeper, and slept most of the time in the car. He was very comfortable in his crate, and loved to sit with us in front of the fireplace. He was a happy lil skunk. We burned most of a rick of wood. The hours by the crackling fire in the fireplace were my favorite part of the trip . The mountain nights were brisk, and the fire kept the cabin toasty warm.

I did all of the driving. I am told I did very well. I thought so too. This is a good thing, and is always a concern of mine. The entire trip was about 850 miles. I used the GPS most of the time. I didn't get a real understanding of the area however until I purchased a local road map. Seeing it on paper helped me to get oriented. Having a good map in the car also made me feel more secure. We even explored some way-remote single track dirt roads. We had planned on making a few day trips around the area of under a hundred miles.

Anyway, the purpose of the trip was to see some Elk, maybe some other animals, and have a relaxing getaway. The trip was a success.

Before we even found our cabin we saw a couple Whitetail Deer. We were winding up a mountainside on a single lane dirt road, totally lost in unfamiliar country far from civilization. We came flying around a hairpin turn, in the middle of darkest mountain darkness,  and our Jeep's headlights suddenly painted a couple huge Whitetail bucks with their antlers locked in mortal combat. OK, maybe that is a little dramatic. We were more like creeping along a narrow paved country road in second gear with our noses pressed against the windows looking for the address of the cabins, but the big bucks were a real treat to see fighting - and it was on a hill. I have never seen bucks in combat before, except maybe on the cover of a hunting magazine. Too bad the camera was still packed away.

Right after that we saw a clan of Raccoons out marauding. The Raccoons were very dark colored compared to our local NW Ohio variety. They looked more black, and not striped. A sure sign we were getting close to the cabin - we hoped! We found the cabins a short time later, and got us and Kroozer settled in for the night. The cabin was older, and well used, but very clean and comfortable. It had everything we needed for a great getaway.

While driving to a fancy dinner at the lodge the next night we saw a wild Black Bear. That was a special treat. The bear ran across the road in front of us, and then stopped and watched us for a few minutes before continuing on up the mountain. The road ran along right next to a river, and the bear was coming from the direction of the water, and heading across the road, and up the hill. We got a really great look at it as it posed watching us from about 75 feet away. A big healthy looking Black Bear. The dinner was adequate, but the service was good, and the restaurant was cozy.

Now, I am generally not a big fan of roadside zoos. Every one I have ever seen has had ill kept animals in poor condition kept in small cages. Horrible places! We stumbled upon one which was pleasantly different. Not only did it have a menagerie of really exotic animals, including cougars, leopards, Fennic Foxes (Too cute!), and the usual bears, goats, horses, donkeys, Emus, giant tortoises, wolves, lynx, birds, and lots more - well, it was a really nice roadside zoo. All of the animals looked happy and healthy, and had enclosures which were large. The animals like the foxes, and wolves, which are more shy, had areas where they could hide. We were there at feeding time, and the animals truly seemed to like the keepers. We saw a Coyote actually lick one of the guys on his cheek, and bounce around like a puppy happy to see him. It was a pleasant way to while away a couple hours.

We spent a whole day chasing Elk around, and got the pictures I have posted here. We also saw a flock of Wild Turkeys, a whole passel of chipmunks and squirrels, and the tracks of Coyote and Lynx.

 On the drive home I was all done in. I had had about all of the relaxing I could stand, and I was happy to be heading for home. I felt tired and happy. I can never really get away from my FTD, but this was as close to feeling "normal" as I have been for a long time. Some days are better than others, and these were all good days.

Comments are welcome.

Wednesday, October 20, 2010

You Need To Read This Book Today

The Best Information on Frontotemporal anywhere - The Book What if It's Not Alzheimer's?

Get this book now by clicking on the picture above.

This book has more specific and helpful information than I was able to find anywhere else. I refer to it all of the time. It has been a huge help to me, and my friends. What if It's Not Alzheimer's? has more good solid information than everything on the internet put together. The best part is it is specifically about Frontotemporal Dementia.

According to the editor it - Includes Vital Information on Frontotemporal Dementia (FTD) Foreword by John Q. Trojanowski, MD, PhD, Director, Alzheimer's Disease Center, University of Pennsylvania Hospital Although the public most often associates dementia with Alzheimer's disease, the medical profession now distinguishes various types of "other" dementias. This book is the first comprehensive guide dealing with frontotemporal dementia (FTD), one of the largest groups of non-Alzheimer's dementias. The contributors are either specialists in their fields or have exceptional hands-on experience with FTD sufferers.

Beginning with a focus on the medical facts, the first part defines and explores FTD as an illness distinct from Alzheimer's disease. Also considered are clinical and medical care issues and practices, as well as such topics as finding a medical team and rehabilitation interventions. The next section on managing care examines the daily care routine including exercise, socialization, adapting the home environment, and behavioral issues. In the following section on caregiver resources, the contributors identify professional and government assistance programs along with private resources and legal options.

This newly revised edition follows recent worldwide collaboration in research and provides the most current medical information available, a better understanding of the different classifications of FTD, and more clarity regarding the role of genetics. A completely new chapter 5 enlightens the reader about the various drugs that are now being used with FTD patients and also delves into a number of nonmedical options. The wealth of information offered in these pages will help both healthcare professionals and caregivers of someone suffering from frontotemporal dementia.

Get your copy of What If It's Not Alzheimer's? now by following the Amazon link below, or above, or at the bottom right of this blog.

I get a small commission on everything sold through Amazon on this site, so buy a bunch of stuff. How about a new car, or a lawn tractor? Books? Music? A diamond ring or two? Your price does not change, and every little bit helps ; )

Thank you.

Saturday, October 16, 2010

Work Arounds - Part 2

Work-around: a plan or method to circumvent a problem without eliminating it.

(Everything here is my account of what happened to me, or my interpretation of stuff. Keep in mind as you read this that the person who wrote this has Frontotemporal Dementia. I do not recommend any of these solutions for others. Every case of FTD is different. What I am saying is that right now - today - they work for me.)

This is a continuation of the Work Arounds - Part 1 post. What I am writing about here are work-arounds I use for special situations. Things that don't happen all the time, or require something more specialized. In thinking about work-arounds I keep coming up with new ones - both big and small. Sometimes it seems like my whole life has turned into one big work-around. But hey! Some days are better than others.

Some of these may be more changes in the way I approach and do things than actual work-arounds, but for me they serve the same purpose.

A work-around for both sequencing, and for initiating actions comes from a strange place. This is actually the one which gave me the idea for this post on work-arounds to begin with - Others. My friend commented last evening out of the blue that this is evident in my behavior. I do better when I do not spend the whole day alone.

I would likely not go anywhere, or do anything, if it was not for the assistance (and sometimes insistence!) of friends. Just having someone else help with the planning, initiating, and going with me allows me to go. Having someone who understands some of my limitations, and can just take my hand in a confusing crowd. This is a work-around because in the past I was very independent. I did not need the assistance of anyone for anything. This is a big change.

Also having another person with me who is not afflicted with bvFTD serves as an anchor for me. I notice I stay focused better when I am doing something with someone else. It is subtle, and very simple. For example when making a meal, it is easier to get all of the steps in order when someone else is helping. I am a really great cook - or so I think - but it is easier if someone else is helping.

I am not describing this one very well. It is not any actual help that is the work-around. It is the presence of another person doing normal things. I sort of identify, or react to their actions, and it helps keep me on track. Another example is when you are walking with someone, you frequently look at one another, and eventually fall into step. Some kind of feedback is going on.

OK - maybe having company around isn't a work-around at all - but it feels like one to me because it acts like an anchor to normalcy.

Here is something a little more mundane. I do things slowly, and take time to prepare. By "prepare" I mean I may take several days to think about something before even starting on it.

A friend gave me a computer recently. He gave it to me because it was totally useless. Nice guy! He said the hard-drive was ruined, and needed to be replaced. It would not boot up at all. I have an extra drive, so figured I would give it a try. I was a little worried I might no longer be able to figure it out. Thinking is hard. When I examined it, I found that it appeared that it might just be the operating system that was the problem. Windows Media - go figure!

I thought about it for several days, and went over it in my head many times. Finally I took an old Windows XP disk, and reinstalled the system. It worked! Of course with Windows you have 30 days to register it, and this copy was already registered on this old computer. No way was I gonna shell out a couple hundred bucks to Microsoft for another copy of an operating system that has never worked well. But some progress with the broken computer had been made.

So, I thought about it some more. It took about a week to come up with a plan to try a free operating system. Linux! It took another several days of research online to learn a few things about the various versions. Reading several different web sites seemed to help retention. It took a full day for me just to write a CD. The CD writer in this computer is so old it cannot write a CD image of such a large file. It took me another day to figure out and plan a work-around for that problem. I just went very slowly. I would do one step, and wait and think before going on to the next.

The bottom line is that I took my time, and worked at my own pace. I did it slowly. I stopped, and took a few days to plan and figure things out. I made a few lists, and wrote out some of the steps in the proper order. I got detailed instructions online. It took a couple weeks to do what would have taken me a few hours in the past - but I got it done. I am rather proud to have managed to install Linux, and have a really fast working computer to show for it.

This doing things more slowly, and taking time to think about it, also applies to making decisions. I am no longer any good at making decisions quickly. Sometimes I write about them, and explore the pros and cons, and various outcomes. Just thinking about something for a few days lets me decide with less stress. When I need to decide something quickly, I can feel the stress.

Work arounds for emotions are a little more difficult than for memory, thinking, and attention. Since I have become aware of my anger and rage as a symptom, I am always on the watch for it. A few times over the past few months I have felt my rage growing, and have been able to diffuse it. So far I have been able to keep it under control. I can feel it growing like a fire inside of me. It is like a feedback loop - growing bigger feeding on itself. I recognized the feeling, and was able to clamp it down. I fear it getting away from me. It burns hot, and feels good. I want to let it burn, but I know I must not. There is a scene in the movie Fire Starter where she stops her rage by transferring her attention to boiling a pot of water. I do something like that inside my head. I actually pictured that particular scene when my anger was growing. In one case recently I physically removed myself from the situation. I also try to avoid situations and people which will ignite these dangerous emotions.

When I have a period of increased stress, I crave some alone time afterward. I remove all the stress by hiding for a while. I do not answer the phone, and do not answer the door. Sometimes I do not even read any emails. It is relaxing, and refreshes me. I am careful not to let it go on for more than a couple of days, but sometimes I just need a little break from everything and everyone.

I saved this one for last: Driving. I read recently that people diagnosed with dementia drive for about 2 years after the diagnosis. I also read that with FTD - Frontotemporal Dementia - one of the biggest difficulties driving is with attention. It is hard to do more than one thing at a time. Driving requires being aware of many things all at once.

So far I seem to be doing very well driving. As a work around I do drive less, and try to avoid heavy traffic. Since I have gotten confused a couple times, and not known exactly how to get where I was going, or where I was, I use GPS almost all the time.

Most of the time I do not need the GPS, but just a few weeks ago I was returning home from my doctor's appointment, and there was a detour. Even though it was an area familiar to me I was totally disoriented. All of a sudden I had no idea where I was, or where the road I was on went. I had no idea how to get home. I just followed the directions from my GPS, made the appropriate turns, and a few minutes later I knew where I was, and how to get home.

Having the GPS already engaged allowed me to navigate through the confusion without the stress of getting lost. I didn't have to pull over, and start the GPS. It was easy, and comforting to have this back-up system in place.

Though I think I am still capable of driving, I do not just rely on my own evaluation. I seek feed back, and the opinions of friends and family. I must assume their judgment is better than mine on this. So far everyone says I am doing very well. I know eventually I will have to give up driving, and a huge part of my freedom with it.

I mentioned in a previous post that it feels like my whole life is just one big work-around. Maybe it is. From my perspective it feels natural most of the time. I just do what I need to do to get through each day.

Some days are better than others.

Comments are welcome.

Sunday, October 10, 2010

Work Causes Dementia

Work Sucks! Everybody Knows That! Save Yourself! Quit Now!

Sometimes I stumble across some Dementia research that is interesting. This is one of those articles. It kinda explains why I can still write this blog, but not why I cannot do simple arithmetic. I did not read the original study in full, but the research model appears not to support the conclusions - but the data is interesting.

Since this is yet another correlational study trying to show causation we might as well do the same. I think that it clearly shows that having a job causes dementia, and that depending on the job you happen to have it causes it to affect different areas of the brain. Work drove me crazy! The solution is simple: Don't work! Join the ranks of the unemployed. Hey! With the unemployment figures we have now that seems to be the current healthcare plan in action!

Or:  People predisposed to getting dementia on one side or the other choose professions that use the unaffected side of their brains.  Without some manipulation of a variable this conclusion makes just as much sense as the one drawn in the following article. It may be a valid predictor, but of what - that people with left-side atrophy choose careers that favor the right side of the brain?

The fact that the conclusions stretch what can really be determined from the study, it is quite possible that they are correct. After all, it does make sense that the stronger side of the brain would be less impacted by the atrophy associated with FTD. So, what would happen if you changed jobs? I'm just asking. Like they said, more research is needed... but what do I know? I have dementia.

BOSTON, Sept. 23 (UPI) -- A study of U.S., Canadian and European patients with a form of dementia suggests one's career may influence where the disease begins in the brain.

The study -- led by Baycrest's Rotman Research Institute in collaboration with the Memory and Aging Center at the University of California, San Francisco, and several U.S. and European clinical sites conducted -- was a multi-center review of brain imaging and occupation data from 588 patients diagnosed with frontotemporal lobar degeneration, or frontotemporal dementia.

Dr. Nathan Spreng, who conducted the study while a psychology graduate student at Baycrest and is now a postdoctoral fellow at Harvard University, says this type of dementia often strikes in middle age and manifests on either the left or the right side of the brain, while Alzheimer's tends to affect both sides of the brain equally.

"The disease appeared to attack the side of the brain that was the least used in the patient's professional life,"  Spreng says in a statement.

Patients who had jobs rated highly for verbal skills, such as a school principal or chief executive, showed greater tissue loss on the right side of the brain -- which is not specialized for language or verbal skills. Patients with jobs rated lower for verbal skills, such as art director or flight engineer, showed greater atrophy on the left side of the brain.

Further research will be needed to determine how strong a predictor occupation may be for hemispheric localization of the disease, Spreng says.

The findings are published in the journal Neuropsychologia.

Comments are welcome.

Tuesday, October 5, 2010

Work Arounds - Part 1

Work-around: a plan or method to circumvent a problem without eliminating it.

(Everything here is my account of what happened to me, or my interpretation of stuff. Keep in mind as you read this that the person who wrote this has dementia. I do not recommend any of these solutions for others. Every case of FTD is different. What I am saying is that right now - today - they work for me.)

I use work-arounds all the time. Every day. Many times every day. Some of the work-arounds just happen naturally, and I do not even have to think about them. Others are specific actions that I take. All of them provide some type of support to assist me in managing my symptoms on a daily basis. The final purpose is to maintain as much of my independence as long as I can.

My major work-arounds fall into just a few categories: familiarity and routine, schedules, reminders, lists, friends, and special situations.

The biggest all-pervasive work-around is the easiest - Familiarity. I do not have to even think about it. It happens naturally. I can't help it, and sometimes have to actively work against it. It is so easy I almost overlooked it as a work-around. It is my environment. My mind automatically seeks out the lower stress of familiar surroundings. I think most everyone does this, but for me it is important.

This sounds simple, but the benefits are huge. I live in the house I have lived in for over 25 years. This makes every day easier. I know where almost everything is located. I know where to put things away. If I can't remember where something is, I know where to look for it. Everything I need is right here. I know what needs to be done, and how to do it. I know the smells and sounds of this old house. It is comfortable and familiar.

This expands to include the whole town. I know my neighbors. I know where everything is. I know all of the streets. I can find all of the stores. I know where stuff is located inside of the stores. It is all comfortable and familiar.

This ever-present familiarity is a big help. I automatically gravitate to the familiar. The less I have to think about doing things - the better. Thinking is hard! That is probably why I am still living in a 4-bedroom hundred-and-ten-year-old house all by myself (except for Kroozer!). That, and right now it is cheaper to keep her. My house payment is less than many rent payments.

Because I live in a familiar place, I also have familiar routines. Routine is another work around. Everyone who works has a morning routine, or would never make it out the door on time. Most people probably also have a routine at bedtime. I do not have to think about it, but I get it all done.

I get up around the same time I have for years. I pretty much do the same things in the same order every morning. Same in the evening. When I get ready to go out, I have the same routine each time.

Routine helps me to get done what needs to be done in an organized way. It may not always run as smoothly as I would like, but it works. I get my shower, get dressed, have my coffee, and take care of Kroozer. It is natural, and does not require much active thinking. Simple.

In addition to the passive natural extensions to where I live, and the routine of doing what is comfortable and less stressful, I have a lot of other specific active work-arounds. Most of these would fall into the category of reminders. Though memory is not my most debilitating symptom, along with my ADHD-like problems it requires the most work-arounds.

If I do something right away I do not need a reminder, so that is a work-around. Do it now! I frequently stop what I am doing to take care of something that is quick to finish before I can forget to do it. Bills immediately go into the bill organizer. I have always been a master procrastinator, so this is a real active work-around to accommodate my memory and ADHD-like symptoms.

A related work-around is to put things in the same place. Like putting the car keys in the same spot on the counter. Even if I cannot remember putting my phone down, I know it should be in one of 3 places. Usually it is!

The next obvious work-around is the use of lists and notes. I usually have a daily to-do list. It not only serves a a reminder of what to do, but also helps to plan and organize each day. There is always a shopping list in progress as I see that I need to replace items in the pantry.

I do not use many sticky-notes. I do use an erasable white board on the refrigerator for quick reminder notes. These are usually spur of the moment short-term items like stuff that may come up in a telephone call. Something of importance may also go here in addition to other lists as I see it regularly.

While my to-do lists work for the daily things I want to do, I also use a big calendar with lots of writing space. I use this to keep track of things on a weekly or monthly basis. This is where things like doctors appointments, and insurance deadlines go. I also keep other important notes and records on this calendar. I usually keep it in plain sight on the dining room table.

And that is another reminder. I put it in plain sight. One of the best examples of this is that I keep my medications right next to the coffee pot. When I make my morning coffee, I am instantly reminded to take my pills. Also, the coffee, coffee-grinder, sink, coffee-maker, and pills are all on the counter-top organized from left to right in the order I need them. In plain sight, and all in the proper order. It is a subtle, but very effective work-around.

Of special note, and worth mentioning, are a few work-arounds I do just for safety. I probably wouldn't need to, but why take a chance? If I have a fire, or something on the stove, or I am adding water to the pool - I set the timer. It is a reminder, and I guess it is a work-around just in case I forgot, or got things out of order, or got distracted. I do frequently use work-arounds just for safety.

I also use work-arounds for situations which come up infrequently, or require a unique solution. Since this post has turned out to be about 10 times longer than I intended, I think I will address these in a future post. This is not a very exciting topic, but it is a big part of my day-to-day living.

I realize that if you were to spend the day with me, you would probably not even notice most of my work-arounds. The calendar, and the to-do lists are obvious. The others are just incorporated into my daily living.

Comments are welcome.