Well, today was Jim's 2nd ALS Clinic appointment. For those not familiar - it is a "round robin" visit where patients rotate through PT, OT, Speech Therapist, Nutritionist, social worker and neurologist.
All in all it was a very good day. Jim was having a good day both physically and mentally. He has some increased stiffness (which is obvious) which is from the muscles shortening. He has been shown more stretches to do - trick is to get him to do them!! He was also given some stretching exercises for his wrists. His grip was actually a lot stronger then it was in January (probably due to good day & meds helping the muscle spasms.)
His breathing is still good and weight is stable - the "thinness" we are seeing in his legs, chest and legs is most likely muscle atrophy. (Again something we pretty much guessed.)
I wasn't overly impressed with the neurologist - don't get me wrong he was nice and all - but like the other 2 better. He does think we should pursue the consult with the FTD specialist (scheduled for August.)
After getting out of the appointments early I asked Jim what he would like to do - he wanted to see Eclipse. So yes I have seen it 2x on opening day!! (nerd) Jim also applied for his golden buckeye card (lol).
I offically feel old 4+ hours in the clinic, lunch with our 2 for 1 coupon, matinee movie and a buckeye card. Now we just need to be in bed before dark.
**** I REALLY have to thank my cousin Gretchen for watching our girls!!! It was so nice to not have to worry about them and know they're having lots of fun!!!*****
Wednesday, June 30, 2010
Sunday, June 20, 2010
A whole lotta nothing...
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!
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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