Well, we had his appt yesterday. The FTD neuro is retiring and will refer us over to the new head of the department. However, he thinks much could be handled by the ALS neuro. His physcian's assitant promises us we will not fall through the cracks.
His next ALS clinic is scheduled for June 30.
The neuro says he thinks we are handling this well because I am accepting that Jim is the way he is mentally because of the disease and not because he is trying to be a jack a$$. Says that is a big hurdle for families to get over.
He says he can't believe that Jim hasn't lost weight - he to notices changes in his legs and shoulders. I told him that I bought him pants that were 2" smaller at Christmas and they already look big - he agreed. But his weight is stable - actually a little higher then a year ago. Again something else that doesn't make sense.
He is having intense pain on his left side (kinda like what he used to have on his right.) Jim says it's an 11 on a scale of 1 - 10. Neuro says this stumps him. ALS shouldn't affect those muscles - but then again Jim's ALS isn't typical.
Right now he is just continuing to treat this with pain medication. We also have in home physical and occupational therapy coming in a few times a week.
The doctor also noticed fasiculations (muscle spasms) in his biceps - this is new but I had a problem seeing them. He said it is not loss of strength in his upper body - but something else (can't remember the term he used.) Some kind of Parkinsons-like symptom.
Good news(???!!!) is that since Jim is not typical in his ALS progression so his prognosis is a little better. "Standard" ALS/FTD is 18mos - 3yrs.
Jim's prognosis is 3-7 years.
Hate to put all this info in an email/post - but don't think I can handle repeating it in detail over and over in phone calls. Any other questions please ask.
Prayers are always accepted! In the meantime enjoy life!!
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