This disease is such a mystery. I called our neurologist's office today (Dr. B) to ask some questions now that I've had time to process some of this. I asked about Dave's MRI compared to others - did it look how she would expect? Worse then others? Not so bad? Is his hearing loss caused by FTD or is it coincidental? Is his pursed breathing part of the disease? Would she classify his FTD as the behavior variant kind? How severe is his - what "stage" of the progression of the disease?
The MRI is what it is. There is no way to make a comparison. Some people can present with lesser clinical symptoms but their MRI may look severe, others can present with many clinical symptoms, but their MRI doesn't show much degeneration. Okay. The hearing loss is NOT caused by FTD, it is just coincidental. The pursed breathing? An OCD kind of behavior - certainly not unexpected to have those kind of symptoms with FTD. She would classify Dave's FTD as the behavior variant type, which is what I thought based on the symptoms. And she would say he's in the mild to moderate state of the disease, in part because he is impaired enough that he probably could not live on his own. I agree with that. She asked if he was still driving - and he is - he had a driving assessment done last week - took about two and a half hours - I told her he did pass the test - apparently did pretty well - but we haven't received the written report yet. She was surprised he did well, and will call us once they get the report. She suggested we get the assessment at our first appointment, and gave us all the information with where to contact to get this set up. It costs about $300, and will be billed to insurance, but it is doubtful it will be covered. I am glad we had that done - it certainly makes me feel more comfortable about him driving, and it "protects" him in case there would ever be a situation where he was involved in an accident that was not his fault, but his culpability might come into question since he has this degenerative brain disease. Such a good idea! Hopefully we don't have to do this every year or so!
When I was making my list of questions today, I asked Dave if he had any questions. He did ask if one day he would not be able to drive - I explained the reason for the driving assessment, and that for now he seemed to be fine to drive. But sometime down the road, he might not be able to drive. He asked what would happen next - I told him no one really knows - it's that kind of disease and progresses differently in everyone. He asked if he would die from it - I said it is considered a terminal illness, and that he would probably eventually die, but again, depending on the progression, it could be years and years. We talked a little about what the progression might look like, based on information we have in hand. We discussed it was important to tell me about anything he notices with regard to motor weakness or problems, eye problems, etc. so we can make sure Dr. B knows about it. He wondered if he'd still be able to think - I asked him to clarify what he meant and explained some of the problems he had so far. "Just like I'm thinking right now - wondering what happens next - will I think like that?" I told him what I know so far, which is that it is different with every person, but I didn't think he would stop thinking - just have more problems with understanding what was said to him, or for him to get the words out to communicate eventually. He seemed relieved to hear after the phone call that he was in the mild to moderate stage. And he laughed when I told him Dr. B was surprised he passed the driving test! He seemed happy about that. And then he put it out of his mind. That was the longest discussion we had about it - I was glad he was able to think of questions, as he didn't have any when we were in Dr. B's office last week. So he is processing it all, but not dwelling on it.
I accepted the ALS ice bucket challenge today, but noted it was only because of the association with FTD. It seems that any research for ALS with regard to gene mutation will only help FTD advancement because they share a gene mutation. 10 - 15% of people with FTD get ALS. I also noted I would be coming up with some kind of challenge for friends and family to spread the word about FTD and raise some funds for that research! It seemed it did good work to raise awareness for ALS. I'm looking for some ideas! All in all, a good day's work.
Now I've got to take care of the ice bucket challenge - NOT FUN!
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