Today was Jim's 6 month ALS visit. It was a good / not-so-good day.
Good news - Breathing and weight were stable.
Bad news - he has lost A LOT of strength in his arms and some in his right leg.
They recommended a voice projector device so he can be heard better - however he has already said he knows he won't use one. I don't see it happening either - I just see an overpriced karaoke unit for the kids.
There was also talk of adding a Parkinson’s medication to his list. However I decided (and redecided after talking to Aunt Mary) that if we do add it we will wait until later - the medication would help to relieve some of his stiffness etc. but I'm not crazy about the side effects. It can make your mind more fuzzy and lower your blood pressure causing dizziness. These are 2 symptoms Jim has naturally and I think adding to them is not enough of a tradeoff. As I talk to Jim I seem more bothered then he does about the stiffness.
We also talked about his getting a Baclofen pump. This too would treat the stiffness by delivering on of his anti-spasmatic medications through an implanted pump into his system. Again after discussing it with Aunt Mary, the neurologist and the physical therapist we may cross this bridge later but not now. As I said the stiffness seems to bother us instead of him and the initial procedure calls for a test dose administered by lumbar puncture. For those of you who don't remember - Jim had a horrible anxiety/panic attack the last time he had a LP. Then there is surgery involved to implant the pump. I think the pump is definitely something we will have to reconsider, but right now he is in the gray area where he needs it. We will revisit the option down the road.
As of right now - we are both exhausted - 7 hours at the Cleveland Clinic will do that too you. Jim's next appointment is next Friday with the new neurologist Dr. Appleby. Updates then.
Thank you for taking the time to care & read this!
