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Friday, March 27, 2015

Progress Update 2015 - 5 Years With bvFTD

It is that time of year again when I try to write a progress report of sorts on the progression of my bvFTD. It has been five years since my diagnosis. Five years! The average life expectancy of someone with bvFTD just happens to be about 5 years after diagnosis. With that in mind, I am doing well.

I just took a few minutes and re-read the updates I have written in past years. I notice that they all sound
Though I try to be very careful, I am still driving.
about the same. This one will be no exception, and that is really great. I am worse-off now than I was 5 years ago. My disease is progressing, but so far it is progressing slowly. I had really hoped that my case would fit the criteria for what is called Phenocopy bvFTD, however I have too much progression. That is my self-evaluation, but probably a very accurate one.

So! Where am I now?
(Actually, I know where I am, what day it is, and who is the President. I'm just sayin...)

My dysexecutive syndrome and cognitive problems have progressed slowly but surely over the years. I always use my ability to do mental arithmetic as a way to measure. I simply cannot do mental math any more - more precisely I don't bother because it is so difficult. When I try it is like wrestling with tangled thoughts like wet spaghetti - numbers slip away because I can't hold a number in my working memory long enough to manipulate it. Generally, I think I still think OK, but I think that is due to the medications I take. I still have the ability to evaluate very complex problems, and can process large amounts of data. I just can't add!

I have sporadic problems with sequencing. I can usually tell when I am having a more challenging day, and try to adjust accordingly. By "adjusting" I mean cancelling any ambitious plans, and staying close to home if at all possible. Since I rarely have any ambitious plans this usually does not pose much of a problem. I usually notice it when I am cooking. I still enjoy cooking, and Cindy and I make most meals from scratch. this Not only is it healthier to avoid the extra chemical additives in packaged prepared foods, it is fun cooking together. If I am distracted when I am doing something it can get me all mixed up. I can only concentrate on one thing at a time. There is no such thing as multi-tasking in my life anymore. As an example: Recently Cindy came home from work as I was preparing something for dinner. I cannot for the life of me remember what I was making. Anyway, she started telling me about her day at work as I was getting it ready to put into the oven. I placed whatever it was into the oven, and stopped. I had completely forgotten to add the spices, and the rub, and the sauce. (Maybe it was ribs?) I pulled it back out of the oven, and started over after shooing poor Cindy out of the room. Oh! I remember now! It was actually chicken, and I was getting it ready to put into the rotisserie. I had to start all over again even repositioning it on the skewer, and retying it. And that is an example of how it is to try and remember things. I have a memory that is vague, thisand if I dig and poke at it sometimes it comes back. Sometimes not.

The above example aside, my memory is generally still mostly intact. Between my ADHD-like symptoms and deficits in working memory sometimes things do not seem to make it to memory. I just have a blank spot. I find myself more frequently saying to Cindy, "I have no memory whatsoever of that!" It doesn't happen all that often, but more often than before, and it is quite noticeable when it does occur. When I have memory issues they are usually of the "missing time" variety. The last half of last year seemed to have more frequent occurrences of "missing time".   Antihistamines were involved.

Day-to-day in the moment I am still functioning well. I try to keep a loose schedule. The routine of the daily stuff is comforting. Cooking, cleaning, laundry, shopping, and all the rest of the housekeeping and personal hygiene stuff is part of the routine. When the dog hair starts to blow around like tumbleweeds I know it is time to vacuum. Cindy must dust a lot because I don't do it very often, and the dust isn't too thick in most places. I usually don't stink too bad, so I must be doing ok with the showering and bathing. I have not had a hair cut in 4 years, but that is by choice dictated by finances and the fact that Cindy likes my hair long.

My behavior and impulse control may have suffered some this past year. This is an area which is difficult to self-evaluate. I notice I am more tempted to act out in public by confronting people who are annoying me, but I am mostly able to control my impulses. Sometimes I just don't care, and say whatever I am thinking. I always have, but to me it seems as if I am having to hold back more often - if I hold back. I have no problem telling someone on their cell phone in the grocery store who just stops in the middle of the isle to, "Hang up and shop!" Related to this: Little things can really upset me. Sometimes making me angry, but sometimes a free-floating anxiety. This also has been happening more frequently, and I will discuss it with  my physician on my next visit if it persists, and I remember.

I am still driving. I couple weeks ago I pulled out of a parking lot, and was almost hit by another car that crashed the light. It turns out that it was a funeral procession, and I cut right into the middle of it. I was really upset at the time. In retrospect there was no escort car with flashing lights, and the little flags on the cars were hidden below a roof rack, and most importantly there was a huge gap in the procession so it appeared the intersection was clear. Cindy and I discussed it at length afterwards, and came to the conclusion that it was just one of those things, but I am ever vigilant about my driving. Driving requires multitudes of decisions, and making decisions gets a little more difficult each year. So far I am doing OK, but that incident was scary and really made me do some evaluation.

My sleep patterns are all messed up. I rarely get an uninterrupted night's sleep. Usually I sleep for a few hours, then get up for a few hours, then go back to sleep. I often take an afternoon nap. Around 3-4 PM I get very tired. I think this is a side effect of the medications I am taking, but sleep disorders of all kinds are prevalent with bvFTD and most other dementias.

The biggest changes I have noticed are in my motivation, and in my speech. One of my most debilitating symptoms is not being able to make myself do anything. Thinking about doing something is just as good, if not better, than actually doing it. I just cannot get started, and this has definitely gotten worse in the past year. The fact that it has been below freezing for a month, and was negative 12 degrees last night might have some influence on my not wanting to poke my nose out the door. I am also more anti-social, but I think that is related somehow. I fumble around for a word, or cannot remember a name or title much more often that before. This is still not debilitating, but it is now becoming more noticeable as it is an almost daily occurrence.

This winter Gracie became my official licensed service dog.
I started reading early last year. Long ago I was a voracious reader. When my eyesight started to fail I stopped reading except for work. Then, after my diagnosis, when I tried reading again I had great difficulty remembering what I had just read. I was incapable of following a story. This has actually improved. My guess is that it is a direct result of the Ritalin. Whatever the reason, as long as I set the print fairly large on my Kindle I am able to read. I remember most of what I read in general, though some books are better than others. I will remember one really well, and another I re-read as if I had just skimmed it the first time. I have not really tested this yet, but I plan to revisit a few books as a test ...when I get around to it.

I am still taking Aricept at 20mg/day, and Namenda at 20 mg/day, and Ritalin at 20 mg/day. I have been taking these 3 drugs for 4 years and some change. Yes! They have some side effects, but in my opinion the benefits are well worth it for me. I have had to add glyburide/metformin 2.5/500 (2 pills twice a day for a daily dose of 10/2000 - if my arithmetic is right.) I probably forget to take my medications at least one or two days a month, but I do not use any reminders other than keeping them in plain sight in the kitchen. I have been lax over the past 6 months in taking any supplements, but I have a couple bottles of Lion's Mane Extract on order, so shall be taking that again in about a week. (They arrived as I was writing this, and I am taking them now.) I seem to take it about 3-4 months out of each year. I would take more if I could afford it.this

I have gained some weight. Actually, I have just kept the weight on which I gained over the past couple years. Most of the medications I take are associated with weight gain. That is a good excuse. Since no matter how little I eat I seem to be unable to lose more than a couple pounds, I am guessing the medications do have an impact, but I may also be craving carbs. I am also getting just about zero exercise. It is a common symptom of bvFTD to crave carbs and show an associated weight gain. I do find myself snacking more in the evenings. This may be a symptom, but I have always craved salty snacks in the evening. Now thisthat I am old it is making me fat.

I realized that I have Tardive Dyskinisia. I realized it a few months ago. Tardive Dyskinisia is an involuntary muscle spasm. In my case it is in my jaw. I found myself tapping my teeth together. This is different from grinding or clenching the jaws at night. This happens to me all the time. I am not aware of it most of the time, then I will realize that I am doing it. I can will it to stop for a while, but not for long. By the time I realized what was going on the damage was done. My teeth have been worn down from all the tapping. I will eventually need some major dental work to repair the damage, but it would be a waste to do anything while the problem persists.

Tardive Dyskinisia is caused by medications. Usually it is caused by the drugs used to treat depression or psychosis. In my case it is likely caused by the Aricept and Namenda. What a trade-off. Tardive Dyskinisia is a temporary condition - at first! If allowed to continue it usually becomes permanent. OOPS!this

Though fatigue is frequently mentioned as a symptom of most forms of dementia including bvFTD, I have never really had much of an issue with it until recently. Just yesterday we were out shopping, and suddenly I got so tired feeling that I could barely drag my feet. I felt like I was staggering along. We ended the shopping trip early. When I got home I took my blood sugar because the fatigue I felt was similar to a very low level. My blood sugar was actually slightly elevated. I took my blood pressure, too. It was well within the normal range ...actually quite good for my age. After resting a couple hours I felt fine. It came on rather suddenly, and then just went away. I have had these bouts of extreme fatigue a few times over the past months. They are quite severe, and disabling. With all the other challenges dealing with bvFTD, this one is posing a problem. I am hoping it is temporary. Time will tell.

Some days are better than others, and after 5 years any days are good days.


  1. thank you for this insight. There were a lot of times I was like oh, that is helpful.

  2. Hi! Thank you for you blog.
    I am a young girl (Spanish) wich in the past years I've done a lottt of changes in my behaviour and my personality. I have very big mental troubles, one of this is that I have lost my social skills completely and all my friends and my job. I do nothing all day. I even can't follow a movie. I have been goin to differents doctors and taking antidepresants and I just have made a MRI four years ago, when I was much better than now. My family do not believe and do no understand me. I am so scared and any of my doctors help me, and they do not believe my symptoms and call them ''depression'' because I am so young, 20 years, but I have read some cases of FTD at that age. I just wanted to vent. Soon I'm going to do another MRI and could confirm.
    I'll be following your blog !

    1. Best wishes for you!!! hope that the next doctor will believe in you and your symptoms, hopefully you'll get an answer soon

  3. Anyone with memory issues should try black cumin seed oil. Botanical name nigella sativa. It regenerates brain cells, Stay away from sugar and eat very little fruit and lots of raw veggies. Look up nigella sativa.com among other things and look up shungite. Wearing it increases blood circulation Also topical magnesium may be helpful as all cells need magnesium. Don't eat nonorganic beef, This info comes from Dr Mercola..You are better off vegetarian anyhow. Sugar in excess kills brain cells as do carbs. Eat broccoli carrots beets cauliflowerbook choy asparagus spinach squash and lots of beans brown rice

  4. Thank you for your blog! I hope you'll go on writing. It is incredibly interesting to read your experiences and development. Since I am working with bvFTD patients as a psychology students, this is an exclusive oppurtunity a complete other view of this disease. Thank you and best wishes from Germany

  5. I appreciate your blog as my husband was diagnosed with FTD - I don't know which kind. It is new to us. I hope you are doing okay as I see there have not been posts since March. I have learned a lot reading your blogs. Thank you - it's people like you who share that make it hopefully easier on others. Thak you!

  6. It has been awhile since I posted on your blog. It has been six years for me now. Diagnosed with bvFTD in 2009, and only expected to live 2 years. Well mine has been slowly progressing like yours. I also can not multitask anymore and when my wife talks to me when I am doing something I completely get off task. Then I get frustrated and upset or angry. I am glad to see someone else that has beat the odds.

  7. Hi Lee,
    I've been following your blog for a few years now, very interested in knowing your inner feelings. My Mum has been 'diagnosed' with FTD six years ago. Now she is 85 and is a far quieter person that she used to be. Given time to respond to questions, she is far more tuned in than appearances would suggest.
    So glad to get your updates and am fascinated with your drug experiments.
    Keep up the good fight!

  8. I just stumbled upon your blog. I find it very interesting, since I am the caregiver for my mother-in-law who has bvFTD. She lives with my husband and I and our young children. She has had it for about 10 years now, and your commentary about how you cannot multitask and when someone talks to you when you are doing something you get completely get off task. My MIL does this all the time, and my young children finally understand that when I'm trying to get Mom to bed not to disrupt us because then we have to start the bedtime routine from the beginning. I will say that after all these years, Mom still has her loving emotions and humor in tact. She loves to look at babies and children (always has), and loves to laugh at sitcoms.
    I appreciate your perspective and I wish you and your wife all the best as you continue on this journey.

  9. Thanks for your comment. I really identify with interruptions getting me off-track. It is very difficult for me to get back to what I was doing, if I ever do. Sometimes it takes several days for me to regroup.

  10. thankyou for sharing your journey. We're in the middle of trying to get a diagnosis for my husband. Well, I am anyway. It has been helpful for me to see what is behind some of the thought processes and behaviours I've seen in him, and for me to try not to take some things he says and does personally. I so wish he would read your blog as some of the things you've said happen he could have been written by him. At least he's willing now to have some tests, once his psychologist suggested they might be a good idea. He's thinking there might be frontotemporal lobe 'involvement'. The GP has already been doing bloodwork to rule out some other things, MRI and fMRI next. Maybe PET. And neuropsychological testing if hubby is still happy to participate then.

  11. Get the PET scan. If the MRI is unremarkable that could be a positive in that it has been suggested that progression will be slower.

    Get the PET scan as this is a defining scan which will show the "white Tau deposits".

    Best Always