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Sunday, February 10, 2013

Okay! Okay! I Am Still Doing Okay In 2013 ...mostly.

It has been 3 years now since my Diagnosis of bvFTD. I am still no expert, but I have learned a few things about Frontotemporal Degeneration. I have been unable to work since mid-February of 2010. I was almost immediately diagnosed with some kind of early-onset dementia, and specifically with bvFTD a few weeks, and many tests later.

Some days are better than others!
Once diagnosed with FTD the prognosis is not good. As stated in an earlier post about survival prognosis research and FTD:
"...After the exclusion of 24 “phenocopy” cases, the analysis was repeated in a subgroup of 67 patients. In this latter group, median survival was 7.9 years from symptom onset and 4.0 years from diagnosis. The only factor associated with shorter survival was the presence of language impairment."

According to this study the average is 4 years  survival time from diagnosis if not a phenocopy case. My diagnosis was 3 years ago. So, what does this mean?

Nothing at all!

At the time of my diagnosis the best guesstimate the doctors had for me was about 12 years or so, but they made it clear that it was just a guess on their part. So what does this mean?

Nothing at all!

The real questions are: How am I doing today? What has changed? Is there anything I can do to slow, stop, or even reverse the progression? Probably not.

First, I would like to say a few words about finances. The change from working full time, and going on Social Security Disability and Disability Insurance payments is profound. Overall I make about 60% of what I did when I was working. Of course that does not count bonuses or profit sharing so it is really less than 50%. I burned through my entire 401K paying off expenses from the first year. I was still very lucky. I took Family Leave from work while I was being diagnosed, and my diagnosis went much quicker than many people I have heard from. I was never misdiagnosed as having some form of depression, and pushed back hard when it was suggested early on in my testing. In short, I was still technically working when I was diagnosed as totally disabled with bvFTD, and still had disability insurance through my company. They actually kept me on a "medical-sick-leave" status for about a year after I stopped working. This allowed me to keep my medical insurance at about 20% of the cost it would have been for the first year when most of the medical tests and costs happened. Since I paid the premiums on my disability insurance myself, the monthly payments from it are tax-free. This was not due to any planning on my part, just dumb luck and company policy. In truth, about a month before I was diagnosed I changed my disability insurance from 80% coverage to 60% coverage to save a few bucks. A great case of "Penny wise! Pound foolish!"

Finances are very tight, but I get by. I am very frugal. Sometimes I don't have enough money to put gas in the car, so I don't drive much near the end of those months. I have just enough for my house payment, plenty of food, and all of my bills. Well, most of my bills, anyway. Some months there is nothing left over, and Kroozer doesn't get any Cheeze-Puffs. As long as nothing major happens, like the kitchen stove blowing up, I am getting along.

I will try to self-asses my symptoms. Keep in mind that a common symptom of FTD is a total unawareness that anything is wrong. I do not think this is one of my symptoms, but how would I know if I was unaware of it? Catch-22!

Overall, I think each and every one of my symptoms is just a little worse than they were 3 years ago. bvFTD is a progressive disease, so that is to be expected. That said, overall I am still doing very well - all things considered. The progression of my disease so far seems to be slow.

There are a few symptoms where I have noticed more of a change. My lack of ability to do even simple arithmetic is worse, or at least it seems worse to me. When I try to think of a simple arithmetic problem there is now an initial blank spot. It is like I no longer know what math is. The very concept is missing. I have to really concentrate to bring it back. I can still add a couple numbers in my head, but it is extremely difficult to hold them in my short-term memory. It is noticeably more difficult than it was even a year ago. I can still understand even the most advanced theories and statistics, but could never do the actual calculations anymore. At least I still remember how to do it, and how to use a calculator. I get by!

I am more anti-social than I was a year ago. I have always been very happy with my own company, and I really do not think I have ever been lonely. Now I take it to extremes. I rarely see anyone. When people do come for a visit it is very stressful, and I feel relieved when they leave - no matter how much I wanted to see them, or how much fun the visit was at the time. I also hardly ever answer my phone, but I never really did except when work required it. It is a common symptom with FTD to alienate friends and family. In my case I just lose touch. I am perfectly happy being a hermit. That isn't to say I am all alone. I have a friend who visits often, and we talk on the phone daily. She is the best!

Related to being a hermit is my sense of time. Time flies by, at least in retrospect. A week, a month, or even several is the same as a day to me. I have a lot more of what I wrote about in an earlier post and called "Missing Time". Well, if friends call and leave a message, and don't hear back from me for a couple months or more, they just disappear. I can't explain, and they don't understand.

Another change I have noticed is a greater tendency to procrastinate. This is also related to my sense of time, but there is more going on. It is more difficult to motivate myself to do anything. I can waste a whole day, and not be able to tell you what I did to pass the time away. It is just gone. Poof! What happened to Monday, Tuesday, and Wednesday of this week? I have no idea. Missing time. I didn't really do anything, or go anyplace, or see anyone. (And I was a happy hermit) Thinking about something is just as good as actually doing it.

I have more trouble coming up with the right word. It isn't debilitating yet, but I have noticed a change in the past few months. This symptom worries me more than the rest as it is directly linked to mortality. I also do not write posts as often. It is more difficult to get motivated. When reading my first posts from 3 years ago I see that my recent posts are more linear in thought, and much more simple in construction. I think I see a change in style.

I have become a lot more careful than I have ever been before. I think things over, and when I get an idea to do something, I wait a day or so and think it over. This is a work-around. I have developed this behaviour as a safety-check against making bad or stupid decisions on the spur of the moment due to my judgement being impaired by bvFTD. That, and I procrastinate.

At the end of the day, 3 years into my diagnosis I am doing very well. I can still drive, and can still live independently and maintain a household. Sure! I need some assistance from time-to-time, but that is to be expected. So far - so good!

I credit the medications and supplements I take with at least slowing the progression of my disease. Every case of FTD is different, and some people cannot tolerate some of the medications I take. Officially there are no medications approved for FTD, so anything I take is considered off-label. Nothing has been shown to slow the progress, or be beneficial in any way for someone with bvFTD. That doesn't mean it doesn't work, just that the necessary research has not be completed, or is inconclusive, or the drug company has not yet bribed the FDA into approving it for this purpose. Yes. I am a little cynical whenever our government gets involved. A couple of the medications I take have been shown to make the symptoms of FTD worse in some cases, especially in cases where behaviour is a major issue. I am currently taking the following:
Metformin, I gained weight. Weight-gain is a side-effect of both Namenda, and Aricept, and a symptom of bvFTD. Because I have gained weight, by blood sugar went up, so I am again taking Metformin. I don't like taking it, and am actively trying to lose weight, but it is very difficult.

Namenda 20mg/day. Expensive stuff, but when I don't take it I see a difference in my executive function. I think better when I take it.

Aricept 20mg/day. Nasty side-effects with this one. It has the same effects as Namenda, but works on a different pathway. It helps me think better.

Methylphenidate (generic Ritilin) 20 mg/day. Another expensive one. This was originally prescribed for my ADHD-like symptoms, but it does much more for me. My neurologist thought it might assist me with managing my deficits in short-term memory by helping with attention. Yes. It does help with my memory, but it seems to do more than just that. It helps me to "Do things". When I do not take it I just sit around and don't do anything at all. Master procrastinator! When I am taking it I seem to get a lot more done. I still procrastinate, but not terminally so. It is expensive because I must see a doctor, and get a written prescription for it each month. I tried going without it, but everyone around me noticed the change including me.

A few vitamin supplements. I don't take them every day, but a few times a week on average, and I alternate which ones I take. Antioxidants rule! Vitamin D3, all the B's including Niacin, C, and occasionally a multivitamin and Ginko. My tight budget is my biggest constraint. Pomegranate Juice is expensive, but I try to get a couple bottles each month because it has been shown to clear plaques out of the brain. My brain needs some clearing. It can't hurt!

Homemade pasta! Easy. Fun. Healthy!
I also try to eat healthy, and rarely eat factory-made prepared foods. Many years ago I decided that food dyes and preservatives were not good for anyone, especially me. Now I am wondering about some of the genetically modified foods, too. I try to keep it simple, and use basic ingredients without going crazy-organic-only. I prefer to cook my own meals from scratch. Overall I try to avoid food additives whenever possible. I don't eat much fruit, but do have a salad now and then - several times a week in the summer when the garden is growing. Vegetables have never been my favorite thing in the world, but I try. Kroozer and I share.

I have been unable to afford the Lion's Mane Extract I wrote about previously for about a year, but as soon as I can save a few extra bucks I am going to resume taking it. I think I had slower progression when I took it regularly, but it is difficult to say for sure that this supplement had anything to do with it. On the chance that it did, I think it is worth $50 a couple times a year.

I still make my own beer whenever I can afford the ingredients. What I make is much better than what can be had at the store, and at a fraction of the cost. Sometimes as little as 30 cents a bottle! Technically I make ale, and what is available at the store is mostly lager. Totally different yeast involved.  I also make wine. Right now I have 5 galons of Meade ready to bottle. It started out with about 18 pounds of pure clover honey. It is delicious! There is also a 3 gallon crock of Strawberry wine bubbling away in the kitchen. Fresh strawberries were on sale a couple weeks ago, so I indulged a little. I don't drink much water except as coffee. I keep getting letters from the local water department (2 times in the last year!) saying that the water "failed to meet federal standards for drinking water for the past 3 months", but it is still OK to drink it. Yeah! Right! I don't like water very much anyway. Never did! Now I have a good excuse. Also note that they send the letter out a couple months after the fact so I would have been drinking it already long before they notified anyone. What a system!

And - Yes! I do still enjoy an occasional cigar. Not as often as I used to because a good cigar is an expensive treat. Think of rolling up a $10 bill, and smoking it!  It is also cold outside, and I do not like my house smelling like stale cigar smoke. Lately when cold air hits my skin it gets red, and itchy. My hands and fingers will swell up in just a few minutes. They so swollen that I cannot even bend them. Did I mention that it itches? Even at around 40 degrees my skin will redden and start to itch. Very unpleasant to be outside in this cold weather.

The past couple of years, especially last Spring, I have noticed a seasonality to my symptoms. They seem to get worse in late winter, and early spring. Then suddenly they got much better when the weather warmed up. It will be interesting to see what happens this March and April. Those months were very difficult for me last year. I lost April altogether. I thought I was ready to be admitted to a long-term care facility because I couldn't function - or at least I thought I couldn't, but then suddenly I got better around May. We shall just have to wait and see what this next year brings.

My friend says I am "beating the odds" when it comes to my progression. I don't really think so. Very little is really known about my disease, and every case is very different from all the rest. The statistics overall are dismal, but statistics do not predict individual outcomes. Today I am feeling pretty optimistic about my individual outcome, but only time will tell, and my sense of time is totally flarged. I am still here.

Okay! Okay! I am still doing Okay! Yay! Some days are better than others.

Comments are encouraged.


  1. It is good to read that you're doing okay.

    Yes, it's the individual results that count, not what the average of known cases is...as there are certainly too many variables to account for.

  2. This April will be much better. I think being aware of how things have happened makes it easier to recognize what is happening and deal with it. I hope that makes sense to you like it does to me. i also think that keeping a sense of humor has helped to deal with some of the symptoms. Talking about how Lee wants to handle certain things when they happen has also made it easier to let him know about changes. I am sure if you have any questions Lee will do his best to give you his view of the answer , and give you any help he can. HUGS