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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!

NOBODY KNOWS!

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.

2 comments:

  1. Hi my husband has just been diagnosed after some anti social behaviour that has caused a big family split up.
    I think he must be in his 3rd or 4th year as thinking back this is when he showed some of the signs.
    I feel for you and luckily we are retired and I am prepared to stick by him no matter what

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  2. Thank you so much for sharing your story. My mother was just diagnosed this week and we start in with all the doctor appointments next week. As I'm sure it was with you, we are all very shocked and at a bit of a loss in preparing for this. I think it would be very helpful if you could give me some of the important questions I should be asking when we meet with the doctors.

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