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Wednesday, September 29, 2010

My bvFTD Symptoms - My Perspective

 What does it look like to 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.)

I recently asked a friend who had read my blog if there were any questions. They had several, along with some suggestions for future topics. The first question was, "How can you tell when you are having a sequencing problem?"

This is a good question, and got me thinking about not only sequencing, but a few of my other symptoms which I notice frequently. It is one thing to say, "I have Dysexecutive Syndrome." It is something else to explain what I notice and feel from my perspective. My deficiencies with working memory, attention, and sequencing all probably work together to make everyday tasks more challenging. Sometimes it is funny - sometimes it just makes me sad - sometimes I get frustrated and upset. Others would probably not notice anything at all. It isn't going to be easy to explain, but I will try. Some examples may help.

Yesterday I was making a bowl of corn flakes. This is simple, and the order doesn't matter much. I got the cereal out of the cupboard. Got the bowl. I put the cereal in the bowl. I opened the refrigerator to get the milk. It was not there. Gone! I glanced around, and the milk was sitting on the kitchen counter. Crap! I added the milk, put everything away, grabbed a spoon, and was done.

I knew instantly that I had already taken the milk out of the fridge and set it on the counter for my cereal, but that I had no memory whatsoever of doing it. I know I must have opened the fridge, taken out the milk, closed the fridge, and set the milk on the counter. Nothing. Gone. Never stored. A complete blank of unaccounted for time. I also knew instantly that it was a symptom of my FTD. I just went on with what I was doing. If you were watching me you probably would never have noticed anything was wrong.

Now before you say, "I might do that" -  it is not the same thing. I am sure everybody does stuff like that now and then. It happens to me all the time. Many times every day. (I just stopped writing this to go back into the kitchen to get the cup of coffee I had warmed up in the microwave, and forgot about and walked away from before the minute was up.)

This morning when I was taking my shower I forgot whether or not I had washed my hair. Was I finished, and ready to get out - or not? Sometimes I just lose my place, and have no idea what I washed and what I didn't. Missing time. A complete blank. I just start over. Can't be too clean I guess.

As I was getting dressed this morning I realized I had not combed my hair, or used deodorant before I left the bathroom. Happens to me all the time. I am used to it. Out of sequence I went back, and did it all after I already had my t shirt on.

Sometimes sequence does matter. Then it is an obvious symptom. It is much easier to use deodorant before you put on a shirt. I just went on, but I knew it was just another symptom. No lost time or memory issue, just the steps out of order. I just went on. It happens all the time.

I went to grab a handkerchief out of the clothes basket this morning because it is allergy season for me. I pulled out something white that looked like a handkerchief. Next thing - I was standing there with a white shirt in my hand. I knew I didn't need the shirt, but for a few long seconds I didn't know why I was looking in the basket for something white. Missing time. I just stood there trying to remember why I was looking in the clothes basket for something white. Then I saw a handkerchief, and I was back on track. I just went on.

I know it is my ADHD-like symptoms, my impaired working memory, and my issues with sequencing along with the rest of the impaired executive functions that are causing the problems. I know all that, but that is not how it looks to me. When I notice something right at the time I recognize it as a symptom. When I try to remember the past it looks different.

It manifests itself to me as "Missing time". I will try to explain, but it is hard to put into words. I look at my watch, and it is 2:00 PM. To me it seems like it should be about 11:30. Missing time! I think about what I did this morning, and I remember having coffee, feeding Kroozer, cleaning up the kitchen, and no idea what I did for the other 3 hours. Did I have lunch - or not? Missing time! I think back about what I did yesterday, and I can remember much of what I did. What I remember accounts for about half of the day. Where was I for the rest of it? Missing time!

This missing time looks to me like my days go by really fast. All of those short instances of missing time are cumulative. They add up. They form a big block of hours when taken all together. It is Wednesday, and to me it feels like it should be Monday afternoon. The rest of the time is missing. Not all gone, just not exactly all accessible.

Frequently what I did, or rather what I can't remember doing, is not really gone and forgotten. It is in my head. If I really concentrate I can get some of it back. Some of it I actually remember, and some of it I can logic out. A reminder like a dirty dish brings back the memory of eating lunch. Wanting a sip of coffee reminds me I have a cup warming in the microwave. Sometimes the memory isn't gone, it is just gone right now.

I might not remember if I watched TV yesterday, but if I concentrate, and work through it step by step, I can usually remember what I watched, and everything about the shows. It is gone, but not totally forgotten. Sometimes it is just gone. Forgotten. How would I know?

I am guessing that the reason I can remember if I concentrate is because the memories are disjointed. Things get disconnected because of the missing time. My memories do not flow smoothly from one to another in the proper sequence. Usually a memory will connect to another bunch of memories. Lots of my memories are floating around all by themselves with broken connections. Just a guess.

This is all a huge change for me. In the past I had a phenomenally good memory, and was able to recall most everything in sequence whenever I wanted. For example at work I was able to remember what each number represented in a row of numbers 1200 spaces long, and where in that sequence each was located. That was my job, and I did it all the time. I can no longer do that. Not even close. Thinking back right now, I can remember only a handful of them, and even then I am not sure.

Speaking of numbers, and I just was, the issues I have with arithmetic are perplexing. Out of curiosity I pulled out an old research and design text. I can still understand very advanced statistical theory, and have no difficulty with extremely complex formulas. Coefficients of orthogonal variance are still a challenge, but they always were. Multivariate analysis is still simple if a little tedious. But I can't add a couple numbers in my head.

I can easily picture an addition problem with a couple numbers one above the other, a plus sign, and a total line. I know the algorithm of adding the ones column first, carrying over to the tens column if necessary, and so forth. I can see the problem, and I know what to do to add the numbers. I just cannot add the numbers.

When I think of arithmetic I have all of the associated memories and theory of the process. When I try to actually do the process there is a hole. It is blank. There is a big black empty nothing in my head where arithmetic used to be. I know where it was. I know what it is I need to think to think doing arithmetic, but when I think that thought that should result in doing arithmetic it connects to a nothingness.

I can picture a simple addition problem in my mind as if it were written on a blackboard. I can add the ones, carry, and add the tens. By that time I can no longer picture the result of adding the ones. I have to actually picture it as if I am writing it on a blackboard in chalk. Very visual. If I really struggle and repeat it several times I can come up with a tentative answer. It is a real struggle, but it is a kind of work-around for simple problems. It takes way too much time to be a practical solution in real life situations. It only works for really simple problems. The actual numbers I am thinking of are 19 + 49. It takes me 20-30 seconds to come up with an answer, and I am not sure it is correct. This applies to subtraction, multiplication, and division also.

I have made many modifications to the way I do things to accommodate these deficiencies. As long as I can recognize that I have an issue, I can take steps to work around it. So far they are working well enough so that I can function. I think of them as "work-arounds", and that is a good subject for a future article.

Comments are welcome.

Saturday, September 25, 2010

My bvFTD Symptoms - Progression

How Long Do I have?

(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.)

It has been about 8 months now since my symptoms of dementia became severe enough to make it impossible for me to continue working. Up until then I had no idea I even had problems. Others noticed something was wrong, but I was totally oblivious.

When I was diagnosed with Frontotemporal Dementia (bvFTD) I was so shocked I couldn't even speak right away. Then the very next words to my Neurologist were, "So, how long do I have?". He made me repeat the question, then said that FTD would not kill me (Yeah! Right!), and that I was very healthy and there was no reason I would not live a long time. Hearing that did not make me feel any better. Living, and having a life are not the same thing.

My next question was to ask him if FTD was reversible (I was so clueless!). He explained that it was not reversible, and that it was progressive.

So again I asked, "How long do I have?"

As I heard myself speak the words I thought how I was asking the same thing every patient who finds out they have a fatal disease asks. It is the first thought plodding through a demented mind. It rises up born on a wave of panic. It is fed by the stark realization - "I am going to die!"

"How long do I have?", I asked him again.

My doctor was very kind, and very patient with me. Over my next few appointments he explained more than once about my MRI, and my Psychoneurological Examination results. As we received more test results, he was able to draw a slightly better picture of where I was in the disease progression.

(I asked the exact same question of my Psychoneurologists, "How long do I have?")

The totally unacceptable answer is: NOBODY KNOWS!

Every case of FTD is different.

There are no good estimates available because the point in the disease where it is diagnosed in every patient is different. For some it takes years of frustration to figure out what is wrong. For others, like me, it only takes a few weeks. If my job had been less demanding I would never have realized anything was wrong. I would have been fired, lost all of my insurance, been unable to hold another job, and still not have suspected I needed to see a doctor. I suspect that is a more typical picture of bvFTD in its early stages. It is an insidious disease. It creeps into your brain slowly. It skulks around inside your head on cat's paws. It is cold and damp like the fog. Your brain is already half turned to Lime Jello before you even notice it is there. It is too late. It is always too late.

So, "How long do I have?"

Both my Neurologist and my Psychoneurologists guessed about 8 to 10 years. Maybe more - maybe less. The range for FTD seems to be 18 months to 18 years. They are guessing the mean. That is actually the best guess without more information.

What they are really saying is: NOBODY KNOWS!

Here is what I can guess on my own to make some kind of an assessment. It isn't much, and it does not really answer the question, but it does make me feel a little better.

I had a lot of cognitive and behavioral changes in 2008 and 2009. I can no longer work. I can still drive. I can still manage my own daily activities in a controlled environment. I have emotional and behavioral symptoms. I have severely impaired cognition, and Dysexecutive Syndrome. My MRI shows severe atrophy to my brain. I have memory issues. I have made a fairly comprehensive evaluation of my current symptoms, and their severity. My best guess is 8 to 10 years cuz - I DON'T KNOW!

According to the book, What If Its Not Alzheimer's, the symptoms which show up first with bvFTD are usually the ones which contribute most to the progression and decline associated with the disease in the beginning. Eventually there is so much Lime Jello that everything fails.

Basically, at first - What you got is what you get.

It was my intention to take an inventory of changes after 6 months. I did not notice any difference at that time. Now, after about 8 months, I do see a difference. I am hoping it is temporary due to some severe stress that entered my life uninvited, but that may be optimistic.

I have noticed a decline in my short-term memory (and maybe attention). The change seemed rather sudden over the past 2 or 3 weeks, but it is severe enough so that some friends have also noticed it. The suddenness, and severity of the decline has upset me, and added to my overall stress - which seems to affect my memory - yet another Catch 22. It is severe enough to make me modify my daily routine a little to accommodate it. I am more impaired. It is scary.

If you did not know me well, or spend a lot of time with me, it would not be apparent. I may just seem a little scatterbrained or disorganized to someone who didn't know I had FTD. But it does not go away. I see the difference many times every day. The little things that I can't remember - what I did, or where I put it, or if I did this or that. Lost hours of yesterday, or even this morning.

All I can do is keep an eye on the changes that occur as long as I am able to do so, and document them as I and others notice them, and keep my doctors informed. These changes and a comparison of a future MRI will eventually produce a more accurate guess to answer the question, "How long do I have?"

For now I have to live with - I DON"T KNOW!


Hopefully my progression will be very slow, and I will have a long time, and my insurance company will lose the bet. HAR! We shall see...

Comments are welcome.

Sunday, September 19, 2010

Good Days

Some days are better than others.

I had a really great weekend. What is unusual is that I had a really great weekend, and I did not just sit around home and watch the grass grow.

On Saturday we went to Skunkfest. Yup! There is a festival for skunks and their owners. Of course I never would have gone alone. I would have thought about it, and then afterward wished I had, but I never would have made it. It took a little support from a couple of friends (OK. A LOT of support, and some hand-holding!), but Kroozer, my friend, and I packed up and went. It was a lot of fun.

I drove, and with the help of my GPS had no difficulty in getting there. Kroozer was agitated to be loose in the car at first, but calmed down when he went back into his crate which was set up in the back of the Jeep. He was awake for the whole trip which took a couple hours.

The festival was larger than we expected. There were about 25 vendors, and a lot of people with skunks who were more than happy to share their experiences. There were big skunks, white skunks, brown skunks, and little teeny skunks the size of a gopher.  The skunk rescue agency (Skunk Haven) where I adopted Kroozer sponsored the event, and they were all glad to see his fat butt again. He did surprisingly well in the crowd of people, and only bared his teeth once at another skunk. I think he was afraid we were going to set him up with an albino-fattie skunk. He made it clear he does not like albino-fatties.
We went to SkunkFest and all we got were these kool tshirts!

Back - a raised skunk tail!

 Kroozer was tired, and so were we. I carried him around in my arms like a baby almost the whole time. It reminded me of when my kids were little. Like a baby he got heavy after a while. He slept all the way home hiding under a towel in his crate. That is typical. He likes to burrow under a towel, or a pillow, or the couch cushions. We left him sleeping while we stopped at a nice restaurant for dinner. He was so sound asleep I don't think he even noticed we were gone until I woke him up opening the car door after dinner.

Overall it was a good day. I managed my symptoms pretty well. I was able to concentrate on one thing at a time and not get overwhelmed. After a couple hours it became a little more difficult, and I started to feel some anxiety. It was time to leave - Kroozer was ready to go too - so we said our good-byes, and left.

One thing did happen on the way there that really upset me. We stopped at a rest stop, and I rearranged Kroozer's carrier, and his crate, so he could climb in and out between the front seat, and the back whenever he wanted to. When it was time to get back on the road again I had no idea where the car keys were!

I thought I had set them down just inside the back door, but when I looked they were not there. With the issues I have been having with my memory lately I was pretty upset. I was also upset because I could not find the car keys anywhere. I was getting a little panicked, and frustrated. I was sure it was a symptom of my FTD.

My friend calmly found the keys. They were almost where I thought I had left them, but they had slipped down into a crack between the seats. We discussed this, and both decided it was not a symptom, but just something stupid that could have happened to anybody.

The point is - sometimes it is difficult to tell whether something is a symptom or not. Most of the time it doesn't matter (I don't care, and I don't notice!), but losing the car keys in the middle of a trip is enough out of the ordinary to be noticed.

In any case - I am going to finally place another set of keys hidden on the car as a back up.

Forewarned is half an octopus!

The most valuable information we gained was that Kroozer is not really a schizophrenic skunk. All skunks seem to be schizophrenic. The general consensus is that it can take up to 2 years for a skunk to get acclimated to a new home. On that front Kroozer is doing really well.

But wait! That's not all!

On Sunday we went to The Renaissance Festival!

It was the busiest I have ever seen it, and for sure the biggest crowd of eccentric people I have been a part of for a long time. I am guessing 10,000 people or more, but who can tell - it could have been twice that. It was a busy place! I did not have any issues with the hustle and bustle. I have been there enough times in the past where I was comfortable with the surroundings, and knew what to expect. That made it very manageable for me.

It was a full day starting with breakfast out, and not ending until way late into the evening. It was both fun and tiring. Other than losing my sense of direction a couple of times in the midst of the madding crowd, I do not believe I had any FTD related issues at all. I did not drive, and was well looked after throughout the day. That made it very low stress for me. At least as low stress as being in the midst of thousands of people can be. I got a little antsy after several hours, but the festival was closing anyway so it didn't matter. It was time to leave.

I had help this weekend, and was happy to have it. I would have just stayed home, and watched the grass grow if it had not been for the support of someone who cares. For that I give many thanks, and much appreciation. In small insidious ways I am becoming more and more dependent on other people. This is something I am not at all used to, and do not at all like. This is something I both accept, and fight against. I have always been a very independent person, and I want to remain that way as long as I possible can - and then just a little bit longer!

Some days are better than others. This weekend I had two good days in a row - and so far today ain't too shabby! I will take the good days whenever I can get them.

Comments are welcome.

Monday, September 13, 2010

Helloooo out there!

Can anybody hear me?

Over the past weeks I have had some new visitors reading My Personal Account of Living With bvFTD. In addition to every state in the United States, there have also been visitors from the following countries.

Hong Kong



United Kingdom

South Africa

I hope at least some find something here of value. Please stop by again.

Thank you.

Having A Pet

A Skunk? I must be Demented! Oh... Yeah..

Everyone knows there are many benefits to owning a pet both physical & emotional. I looked it up anyway, and there is a lot of information on the web about it. The list below covers what most of the sites tend to agree on.

Some of the benefits of owning a pet are: 
* Lower blood pressure.
* Lower Triglyceride levels.
* Lower cholesterol levels.
* Lower rates of depression.
* Higher survival rates after a heart attack have been found in pet owners.
* Pets offer companionship, thus reducing feelings of loneliness.
* Pets can offer the opportunity to meet other people either via online forums, pet shows or other hobbies related to your chosen pet.
* Dogs require exercise, which is also of benefit to dog owners. Interestingly, surveys have shown that cat owners are as active as dog owners.
* Pets require love and attention. Pet owners enjoy having somebody to care & look after. Pets give lonely owners a sense of purpose.
* There is nothing sweeter than coming home from a stressful day at work & being able to unwind by stroking your pet. Stress is known to have a detrimental impact on the immune system.
* Elderly people who live alone are often isolated, pet ownership reduces feelings of isolation & loneliness. Pets can offer a sense of purpose & responsibility in the elderly. They also are more active than non pet owners. Which provides an obvious health benefit to them.
* Pets can help reduce sadness in owners.

In addition to all of that, animals have shown to have a beneficial effect on even advanced stage dementia patients. Of course all of the research has been done in nursing homes on Alzheimer's patients using dogs or cats or fish in therapy, but the concept is still valid.

Logan, the dog, was one such animal who visited a nursing home one day. He was an abused animal rescued by the local Humane Society. He visited the nursing home where my former wife worked, and we ended up adopting him. He was a wonderful pet for the children, and a full member of our family for about 12 years. We all still miss him. He was short, and furry. It has been a couple years now, and I am finally ready for a new pet.

But I digress...

The whole purpose of writing this post about the benefits to owning a pet is to justify writing more posts about Kroozer. My friends and my Neurologist all think my having a pet skunk is a great idea. One of my favorite sons has been nagging me for over a year. More importantly, I think I needed a pet, too. I just needed an excuse to share my experience by writing about it in this blog.

In truth, everybody else was thinking along the lines of a dog or a cat or a hamster - nobody was saying, "Hey, Lee! Go get a skunk!".

So, I told you all of that so I could tell you this:

When I was in High School I knew a family that had a pet skunk. This was way back in the late 60's so it was uncommon. I thought their skunk was a really kool pet. Since then I always wanted a pet skunk, but there was always some obstacle in the way. Once I got divorced I started looking into getting a skunk for a pet. After much research, I decided I couldn't afford one, and didn't have the time for one, and that they were too much trouble. Of course I kept looking, and stumbled upon a skunk rescue organization. I contacted them, and filled out a form requesting to be considered for adopting a skunk. Now that I am no longer capable of working due to my FTD I have plenty of time for a pet skunk.

I was notified that there was a skunk that needed a good home, and that he had a "docile personality". I saw his picture online. I made arrangements to go and meet him. He was staying at a skunk foster home (Yes! There are skunk foster homes! Who knew!?)

It was a big deal for me to plan the trip, and actually drive a couple hundred miles round trip. I overcame the resistance, and went. It was very short notice so I didn't have much time to talk myself out of going. The purpose of the trip was to check out the skunk, and for them to see if I would make a suitable skunk owner. If everything worked out I would be able to bring him home in a few weeks.

They said his name was "Oreo", which I dislike immensely. I think it is trite, and didn't fit. I sat in this nice lady's kitchen on the floor in front of his cage for about 20 minutes while he cowered in the corner of his cage. There were 7 other skunks and a few dogs there. Now and then he would hiss and snap at the skunk in the next cage. Eventually I coaxed him to come out and take a small piece of food. He was very shy.

Who's fat!? Not me!
I had been warned that he was uncomfortable with strangers. He was owned by a woman for 2 years, then she gave him to a friend to try to find him a new home because for some reason she could no longer keep him. I guess he didn't get along too well with his new owner, and the guy tried to "make him like him" by feeding him cheese crackers. Lots of cheese crackers! That is why he is fat. That is the story I heard of his background. It may be true, or not.

So... After about a half hour I got a little impatient sitting in front of his cage. After all - at the end of the day I DO have bvFTD. So - I decided to force the issue and see if I wanted to adopt this 3 year old shy overweight antisocial skunk. Risking life and limb, I just reached in and grabbed his fat butt and hauled him out of the cage. Surprise!

I think I heard the woman who was taking care of him actually gasp. She knew way more about skunks than I did, and she expected blood to be spilled. Mine!

Kroozer loves corn on the cob. Howzabot those choppers!
Skunks have teeth! Big teeth! I am not talking about normal teeth like a dog or a cat. For the size, skunks have teeth like daggers. Swords! Scimitars!

I figured if he was going to bite me I needed to know. I did not really want to have to teach an adult skunk not to bite. I really couldn't tell much with him in the cage. I was not being brave because at the time I had no idea how big his fangs were. I figured like a cat or a dog his size. I still would have done it - I have bvFTD and frequently do stupid stuff - OK - maybe not...

Anyway, I hauled him out onto my lap. He did not bite be. He glommed on, and snuggled up to me. For the next hour and a half I held, hugged, and petted him. He fell asleep in my arms.

The woman who was taking care of him said, "I guess he has chosen you as his new owner." What could I do? The skunk rescue organization waived the waiting period because I had such a long drive, and I brought him home that very day.

That was July 22nd. I was totally unprepared to transport a skunk, so we just threw him in a cardboard box with a bath towel. She gave me a couple cups of dog food as a start till I could go shopping for him. He slept almost all the way home. At the start of the day I wasn't even sure I wanted a skunk, let alone this fat antisocial one. I was just going to meet and greet. Little did I know.

Kroozer is taking me out for a walk.
Kroozer did not respond at all to his old name, so I had no problem changing it. I had already chosen the name Kroozer, though the final spelling wasn't decided upon until after he was "home". I had made a list of things that were "Black & White". A police Cruiser was on the list. It fits. He has learned his name is Kroozer.

We spent August getting acclimated to one another. That is why I only wrote 2 posts for the whole month. I was totally engaged with my new pet. It is about 8 weeks later, and we are finally getting settled in.

So, now that I have written this I have an excuse to write more now and then about Kroozer, and the benefits and challenges of having both bvFTD, and a pet skunk. We have a lot in common, and his basic personality incorporates a lot of my symptoms. I may finally have met a creature more stubborn and antisocial  than I am.

Comments are welcome.

Friday, September 10, 2010

Why Do I Write This Blog?

The short answer is: Because I want to!

But since I am writing it, the long answer follows. I am not suggesting here that everyone with dementia would benefit from writing a blog or a journal. I am not saying there is any benefit to reading this blog. I am saying that I find it useful and enjoyable for me. Every case of FTD is different.

I am writing this because I recently re-examined whether or not I was going to continue. This is a bit of a rehash of what I wrote earlier in the What and Why - About This Blog page, but these are the current reasons I decided to continue writing rather than why I started it in the first place.

Writing this blog has many advantages and benefits for me - It is also a royal pain in the butt sometimes.

If you are considering writing, here is some superficial insight. Really, just Google it. There is a lot of helpful information out there.

There are some days when I never want to see this blog again, and never want to write anything again. This is nothing new. I used to feel that way when I was writing in the past. Occasionally I do not know where to start, or have trouble initiating the action of writing. Once I get started it is fun, but it isn't always easy to get started. Sometimes it is difficult to stay on task, and finish what I am writing - especially if I get interrupted by something - like a phone call. I take my time. I write a little bit, watch TV or do something else, then write a little more. I save often, and work on a post over a few days. For me it is a lot of fun most of the time.

Before I ever started it I made a list of about a hundred different things relating to bvFTD to write about, so I have plenty of subject matter. I had also been documenting what I was going through, so I had a lot of it already written before I actually started the blog. I have not looked at my list in quite a while because new ideas pop up based on comments, something I see online, or something that happens during my day. I try to keep to the subject of my bvFTD, but if I want to write about something else - I do. I have written things, and never posted them. I have deleted a few posts. My goal is to be writing a full month ahead, and have all of the posts scheduled. Right now I am about 2-3 weeks ahead. I keep it easy for me.

I decided at the start that I would write it even if nobody else but me ever looked at it. I figured that might be the case, but in the back of my mind I hoped someone somewhere would find something useful here. It is a self-serving and self-rewarding endeavor, but if some other good comes of it that would be great too. That is why I chose to make it readable by anyone online, and now people are reading my blog from all over the world. I never would have expected that! I plan to make a very short post of the stats for tracking as it appears they only show activity for the past month - and I just think it is really, really, really KOOL!.

My blog has allowed me to record and track a lot of information about my experience with bvFTD that can be used for future reference. There is so little first hand information on bvFTD that I hope writing this personal account will be useful to others. It is a wonder that I can still write as well as I do when I can't remember what I did two minutes ago, or add a couple numbers.

By writing it down I can actually see what I was feeling and thinking at the time. When I write them down, I save my thoughts and experiences. By doing this it assists me to make decisions, and to understand the changes brought about by my condition. Sometimes I revisit a topic as my thoughts or feelings change. Sometimes by thinking about or researching something for a post it assists me to put it all in order.

Writing posts for my blog reduces my overall stress. When I am writing, or even thinking about what I am going to write, I am concentrating on that, and not worrying about anything else. I am totally absorbed in what I am doing. It may take me several days to write a short post, but I still enjoy doing it - most of the time.

My blog is also a form of self-expression, and gives me a way to communicate what I am going through. Communication is sometimes difficult - another classic symptom of bvFTD. This blog has become my voice. A shout out to the world - or a whimper in the darkness. It makes me feel like I am being heard, even if I am not. It may provide me with some additional clarity in my understanding of my own condition because it forces me to concentrate and think in an orderly and logical pattern - in theory. Sometimes my writing is more organized than others, but I try. Maybe it will help others to better understand me, and my changed behavior.

I can sometimes see and better understand what I want, what is important to me, and how I feel. This concentrated thinking and examination of my own thoughts and feelings helps me to create goals and resolutions. Sometimes that goal is simply to write about something else. Sometimes the resolution is of huge significance.

When I write about my goals, or my symptoms, or just something fun, it helps me to organize what I want to accomplish for the day, the week, or the month. Often I think of things to add to my to-do list when I am writing. Sometimes I even actually add them. Anything that assists me to organize, and put things in order, can't be all bad. Organization and planning are now very difficult for me.

Writing posts for my blog contributes to my personal awareness. It is a symptom of bvFTD to be unaware of the symptoms of bvFTD. How is that for a Catch-22? For me examining and writing about it helps me see and understand the changes. If I can see and understand them I have a better chance of dealing with them. Sometimes just being aware that something is a symptom lets me recognize it in myself, and to make accommodations for it if possible. BvFTD is with me every minute of every day, and influences every single one of my thoughts and actions and feelings.

The research that I have done for some of my posts has made me aware of some of my symptoms, and contributed to my understanding of my own thoughts and behavior. Awareness seems to help.

When I am writing it is "my time". It is time I set aside without interruptions. It is relaxing, and enjoyable. Even when the subject I am writing about is emotional I still enjoy the writing. I used to enjoy writing books, and now I enjoy writing for my blog. Writers write!

Writing for my blog is not demanding. If I don't get around to it for a few days, it is OK. I can do it at my own pace, whenever I want. I can write about anything, and I can throw it away if I don't like it. I often watch TV or listen to music while I am writing. It is pleasant, and it gives me something to do. I suppose it is mentally stimulating too, but the jury is still out as to whether that is a good thing, or a bad thing. It does make me think. I have to organize, and plan, and execute that plan. These are areas where I am impaired, so working on this blog can be difficult sometimes.

I am trying to create a record, so that it is easier to see patterns, changes, and progression. Sometimes I have forgotten what I wrote, and had to re-read an old post to remind me of what happened. My blog is a snapshot of my thoughts and experiences. My blog can be looked at months or years from now, and comparisons can be made. (Every case of FTD is different. I just had to say it again.)

I feel a need to write it down, get it out. I feel a power in recording my experience because I may not remember otherwise. It is one minor area of my life that I have some amount of control over.

If I can't think of anything to write about for a post, I can always just write about my blog. Hey! What a concept. I just did!

Comments are welcome.

Sunday, September 5, 2010

Mentally Stimulating Activities

To think, or not to think. That is the question... I think not!

New research shows that mentally stimulating activities such as crossword puzzles, reading and listening to the radio may, at first, slow the decline of thinking skills but speed up dementia later in old age. The research is published in the … The American Academy of Neurology, an association of more than 22000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care .

Here is a complete copy of the original press release from September 1, 2010.

ST. PAUL, Minn. – New research shows that mentally stimulating activities such as crossword puzzles, reading and listening to the radio may, at first, slow the decline of thinking skills but speed up dementia later in old age. The research is published in the September 1, 2010, online issue of Neurology®,the medical journal of the American Academy of Neurology.

“Our results suggest that the benefit of delaying the initial signs of cognitive decline may come at the cost of more rapid dementia progression later on, but the question is why does this happen?” said study author Robert S. Wilson, PhD, with Rush University Medical Center in Chicago.

According to Wilson, mentally stimulating activities may somehow enhance the brain’s ability to function relatively normally despite the buildup of lesions in the brain associated with dementia. However, once they are diagnosed with dementia, people who have a more mentally active lifestyle are likely to have more brain changes related to dementia compared to those without a lot of mental activity. As a result, those with more mentally active lifestyles may experience a faster rate of decline once dementia begins.

Wilson noted that mental activities compress the time period that a person spends with dementia, delaying its start and then speeding up its progress. “This reduces the overall amount of time that a person may suffer from dementia,” he said.

For the study, researchers evaluated the mental activities of 1,157 people age 65 or older who did not have dementia at the start of the nearly 12-year study. People answered questions about how often they participated in mental activities such as listening to the radio, watching television, reading, playing games and going to a museum; for this five-point cognitive activity scale, the more points scored, the more often people participated in mentally stimulating exercises.

During the next six years, the study found that the rate of cognitive decline in people without cognitive impairment was reduced by 52 percent for each point on the cognitive activity scale. For people with Alzheimer’s disease, the average rate of decline per year increased by 42 percent for each point on the cognitive activity scale.

The study was supported by the National Institute on Aging and the National Institute of Environmental Health Sciences.

The American Academy of Neurology, an association of more than 22,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as stroke, Alzheimer’s disease, epilepsy, Parkinson’s disease, and multiple sclerosis. For more information about the American Academy of Neurology, visit http://www.aan.com.

Awww Crap! What am I supposed to do now?!

I gotta stop all of this thinking right away... maybe. Just when I think I have something figured out, and have a game plan, somebody always goes and changes the rules of the game. With bvFTD the rules are always changing anyway, so I should be used to it.

The above study seems to deal mostly with Alzheimer's Disease, and an older sample, so it may or may not apply to those of us with FTD. My guess is that it does apply, and may be even more pronounced due to the involvement of the frontal lobes in thinking. Realistically most people with FTD would not be represented in a sample of adults over 65 years old.

And another thing... it looks to me like another case of trying to interpret a correlational study as causal. But what do I know...

It seems to me like a trade-off. Should I trade a slower decline now, with a quick decline later? That kinda sounds like a better deal all around. The idea of becoming a non-thinking mental vegetable today in order to modify my decline at the end seems like a really bad idea. Carpe Diem!

I guess I will have to think about it... like how is listening to the radio mentally stimulating? Luckily I do not like crossword puzzles. Writing this blog is mentally stimulating, but not as much as trying to figure out exactly why there is a skunk-butt sticking out from under my pillow. Is he looking for a piece of cheese, or what?

Comments are welcome.

Wednesday, September 1, 2010

My bvFTD Symptoms - Stress and Memory

Stress and Memory (still even yet... again) - Did I have one Margarita... or was it six!?

(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.)
I have noticed that when I am stressed my memory is much worse. My guess is that it not only is affecting my memory as noted below, but also my attention. When any one part of the Executive Functions breaks down it affects all of the others. My emotions just go along for the ride. I have also noticed that I subconsciously avoid and reduce stress. This is natural, but I may be doing it a little more than before. Stress never really bothered me in the past. That is a change I attribute to bvFTD.

It isn't like I thought of this all on my own. My Neurologist has mentioned it to me on several occasions when we discuss my attention and memory issues. In his opinion they will be more pronounced if I am under stress.

Well! I have been under constant stress for months. Duh! I have had some time periods of greater stress due to financial, and emotional issues. These times of high stress have caused my symptoms to be noticeably worse.

I just gotta chill. Zen! Be the pool! Ommmmmm! Become one with the water. Crap! That stuff never worked for me. Pour me a Margarita, and hand me a skunk! Ahhhhh! That's better!

The information below is copied directly with permission and special thanks from The Franklin Institute website.


Chronic over-secretion of stress hormones adversely affects brain function, especially memory. Too much cortisol can prevent the brain from laying down a new memory, or from accessing already existing memories.

The renowned brain researcher, Robert M. Sapolsky, has shown that sustained stress can damage the hippocampus , the part of the limbic brain which is central to learning and memory. The culprits are "glucocorticoids," a class of steroid hormones secreted from the adrenal glands during stress. They are more commonly know as corticosteroids or cortisol .

During a perceived threat, the adrenal glands immediately release adrenalin. If the threat is severe or still persists after a couple of minutes, the adrenals then release cortisol. Once in the brain cortisol remains much longer than adrenalin, where it continues to affect brain cells.

Have you ever forgotten something during a stressful situation that you should have remembered? Cortisol also interferes with the function of neurotransmitters, the chemicals that brain cells use to communicate with each other.
Excessive cortisol can make it difficult to think or retrieve long-term memories. That's why people get befuddled and confused in a severe crisis. Their mind goes blank because "the lines are down." They can't remember where the fire exit is, for example.

Stress hormones divert blood glucose to exercising muscles, therefore the amount of glucose – hence energy – that reaches the brain's hippocampus is diminished. This creates an energy crisis in the hippocampus which compromises its ability to create new memories.
That may be why some people can't remember a very traumatic event, and why short-term memory is usually the first casualty of age-related memory loss resulting from a lifetime of stress.       

In an animal study, rats were stressed by an electrical shock, and then made to go through a maze that they were already familiar with. When the shock was given either four hours before or two minutes before navigating the maze, the rats had no problem. But, when they were stressed by a shock 30 minutes before, the rats were unable to remember their way through the maze.

This time-dependent effect on memory performance correlates with the levels of circulating cortisol, which are highest at 30 minutes. The same thing happened when non-stressed rats were injected with cortisol. In contrast, when cortisol production was chemically suppressed, then there were no stress-induced effects on memory retrieval.
According to James McGaugh, director of the Center for the Neurobiology of Learning and Memory at the University of California, Irvine, "This effect only lasts for a couple of hours, so that the impairing effect in this case is a temporary impairment of retrieval. The memory is not lost. It is just inaccessible or less accessible for a period of time."12       
Normally, in response to stress, the brain's hypothalamus secretes a hormone that causes the pituitary gland to secrete another hormone that causes the adrenals to secrete cortisol. When levels of cortisol rise to a certain level, several areas of the brain – especially the hippocampus – tell the hypothalamus to turn off the cortisol-producing mechanism. This is the proper feedback response.
The hippocampus, however, is the area most damaged by cortisol. In his book Brain Longevity, Dharma Singh Khalsa, M.D., describes how older people often have lost 20-25% of the cells in their hippocampus, so it cannot provide proper feedback to the hypothalamus, so cortisol continues to be secreted. This, in turn, causes more damage to the hippocampus, and even more cortisol production. Thus, a Catch-22 "degenerative cascade" begins, which can be very difficult to stop.

Studies done by Dr. Robert M. Sapolsky, Professor of Neurology and Neurological Sciences at Stanford University, showed that lots of stress or exposure to cortisol accelerates the degeneration of the aging hippocampus.
And, because the hippocampus is part of the feedback mechanism that signals when to stop cortisol production, a damaged hippocampus causes cortisol levels to get out of control – further compromising memory and cognitive function. The cycle of degeneration then continues. (Perhaps similar to the deterioration of the pancreas-insulin feedback system.)

The study was titled "Cortisol levels during human aging predict hippocampal atrophy and memory deficits". A third of the 60 volunteers, who were between ages 60 and 85, had chronically high cortisol levels, a problem that seems to be fairly common in older people.13
The size of the hippocampus averaged 14% smaller in one group and showed high and rising cortisol levels, compared to a group with moderate and decreasing levels. The small hippocampus group also did worse at remembering a path through a human maze and pictures they'd seen 24 hours earlier and – two tasks that use the hippocampus.
Using magnetic resonance imaging, Mayo Clinic researchers found that specific changes in the hippocampus were linked to changes in behavior associated with aging and Alzheimer's disease. "When certain parts of the hippocampus shrink or deteriorate, specific, related memory abilities are affected," says neurologist Ronald C. Petersen, the principal author of the study.

Furthermore, individuals with a shrunken hippocampus tend to progress more rapidly towards Alzheimer's.
"In earlier studies we were able to show that the volume of the hippocampus could help diagnose early Alzheimer's disease or help predict which patients may develop Alzheimer's disease in the future. Now we can look specifically at which part or parts of the hippocampus are affected and match that with particular memory functions which are impaired in that particular patient," says Dr. Petersen.14
In a 2000 human study, McGaugh and researchers at the University of Zurich asked 36 healthy adults to memorize 60 unrelated nouns that were displayed for four seconds each on a computer screen. Study participants were then tested to see if they could remember the words immediately after they learned the list, and then again, a day later.

Subjects took a tablet of cortisone (precursor of cortisol) or a placebo: either one hour before the initial word presentation; just after the word presentation; or one hour before the retention test. (Actual cortisol concentrations in saliva were comparable to levels produced naturally in response to a major stressor.)
Compared to the placebo, the cortisone pills impaired memory – but only when they were taken an hour before the recall test that was given on the next day. Therefore, high levels of this stress hormone impaired memory, but only when people tried to recall old, not recent, memories.

IThe growth of new brain cells – a process called neurogenesis – is involved in new memory formation. Researchers at Princeton University report that, even in adulthood, thousands of hippocampal neurons were being generated per day.

In animal studies, the number of adult-generated neurons in the hippocampi of rats doubled after they performed specific behavioral tasks and training that involved associative learning. In contrast, tasks that did not require the hippocampus did not stimulate new cell growth.
"All of the species we examined showed evidence of substantial neurogenesis in adulthood," Princeton's Elizabeth Gould said. "These findings indicate that adult-generated hippocampal neurons are specifically affected by, and potentially involved in, associative memory formation."