Thursday, February 20, 2014

 

The FTD frontal temporallobe dementia muddle.

 This is what I have just posted on the dementia forum.
If you are reading this because you have a form of dementia or care for somebody with it, then I can recommend the forum to exchange experiences and ideas and support.
And for friends and family I will just say that  I will keep dementia reports separate from daily life etc on my blog. So there will often be 2 postings each day.


I feel like I am in a nightmare - bad enough that Bill has dementia, but somehow we are in the middle of a medical muddle.
Doctor who gave us the diagnosis talked first of FTD and then dismissed that in preference for Alzheimer's. Confused? Join me in the confusion!
Bill started taking aricept - symptoms got worse.
We saw the local dementia nurse and by the afternoon she was on the phone, having talked to the prescribing nurse. "Stop taking the aricept"
It does make FTD worse.
Today we saw the prescribing nurse. There was no way she was disloyal to her superior - but in so many words she did suggest that the doctor was wrong or handled things badly. The Prescribing nurse has seen the MRI scan and her first thoughts on seeing it were that Bill has FTD and she couldn't understand the aricept prescription.
To be honest, there seems to be no doubt in anybody's mind - except the doctor - that he has FTD. 
Now Bill must get aricept out of the system and we will see the prescribing nurse in 2 weeks. There is no appropriate medication for FTD. 
We will have appointments to see a neuro psychologist and there will be further testing - maybe even another MRI. There could then be a prescription for some sort of drug to control his awful behaviour a bit.
The psychologist will also help me with strategies for coping.
God, is it any wonder that I lost it last night. I felt so angry.
I am trying to tell myself how lucky we are to have the nurses on our side and on the ball as far as diagnosis and treatment are concerned.
I am sure that many of you who have been travelling this road a lot longer than me felt very alone from the outset.
And of course we have to add a trivial hernia operation into the equation - which he can't have until heart abnormalities have been fully investigated. 24 hour heart monitor for him next week.
It will all be unravelled. One day.
And will that make me feel better? Perhaps slightly. The fact is that Bill has dementia and it will get a lot lot worse - whatever.







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