Well, after Jim's last visit there is only one thing certain - he does have FTD and some sort of primary MND (motor neuron disease), still possibly ALS. Right now he is not showing any muscle atrophy - therefore no definate ALS diagnosis.
I also found out that the FTD is also one of the 50 conditions on the social security "compassionate allowance" list. That is why he was approved so speedy and the term ALS syndrome probably didn't make a difference. Prognosis for FTD is 2-17 yrs, average being 8.
SO WHAT'S NEXT? ...
1. We are waiting for approval for a PET scan of his brain (show what areas affected)
2. Barium-swallow exam (due to choking issues)
3. Follow up with both neurologists in early December. (original one will treat the dementia &
behavior "issues" and the new one the MND
4. I am trying to get spinal tap moved up so results will be back for these visits (this is to check if
hereditary)
5. In December he will have another "battery" of tests. His follow-up will include meeting with
not only the neurologists offices but also an entire "team" : Physical, occupational and speech
therapists, nutritionist and a social worker.
I don't have a time scheduled for this yet - they are working on coordinating it so we can make 1 trip. Thank God for that!
How's Jim doing?
Pretty much the same. Still very unaware of most of this, which will get worse instead of better. Besides occasional muscle spasms - he told the doctor he has no symptoms! There are definate gait and motor control changes, though not always obvious. He is having a lot of leg muscle spasms at night. He sleeps right through them (wish I could say the same!)
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