I can't believe more then a month has gone by - so much has gone on. Mikayla graduated kindergarten and had her dance recital. I have opened the pool (successfully I may add.) Besides that - a whole lot of nothing new.
Jim had almost 2 very good weeks we it almost felt like the "old Jim" was back. He was right on with his humor and very helpful around the house and with the kids. Was a lot of fun. Well this weekend the aggitation seems to be really coming back as well as the (what I call ADD) behaviours. He's been really distracted and kinda distant yet real focused on what is important to him (like trips for icecream and miscellaneous household things.) Some days he is pushing himself to get the most irrelevant tasks done.
Though his FTD symptoms seem to have let up these couple weeks the ALS has seemed to "flare up." He has almost no upper body strength. We are finding he can't turn a screw driver and really isn't lifting things like he used to. He can no longer carry Ruthie to bed (Mikayla was out awhile ago.) He is having more noticable fasiculations (spasms) in his arms. They are not painful - but he says he can really feel them and you can see the muscles moving.
Also increased are his "night tremors." The doctors recentally increased his medication for these from 40 to 60mg - but they are breaking through again. They seem to bother me more then him so we are waiting to bring it up again at the ALS clinic on 6/30.
We recieved "offical" word that his FTD neurologist has retired so we were referred to another Clinic neurologist. I am waiting to get the ALS doctor's opinion on the new doctor. Our old neurologist thinks that the ALS doctor should be able to handle most of the FTD symptoms also.
Not that I lack faith in the new guy - I have scheduled an appointment with a University Hospital neurologist who specializes in FTD. Just want to see what he has to say. I have heard nothing but positive things about this doctor and he is supposed to really understand FTD. Of course the first opening for this doctor isn't until mid-August.
Well, I think that about covers it - not very exciting - just a lot of busy work!
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