- Joined
- May 7, 2017
- Messages
- 1,884
- Reason
- Lost a loved one
- Diagnosis
- 05/2017
- Country
- CA
- State
- AB
- City
- CALGARY
Hello,
My husband has just ended his clinical trial (he dropped out March 28th) for Pimozide. Apparently, he's not progressed in his right leg or arm since last September but has only slightly in his left leg, which is his drop foot leg. However, I am finding it harder and harder to believe this, as my husband has started tripping everyday on his drop foot leg.
We had gone on a three week vacation to Europe at the end of March and just got back on Friday, and our very first night in Paris, he tripped over absolutely nothing and fell on his face...hard. Since then, he has tripped or stumbled everyday and it looks like his boot is now too heavy for his foot. He wears an AFO but it seems to be doing no good. Also, he had to be wheeled around in a wheelchair in each airport and walking more than a few minutes is too tiring. We have now ordered a scooter.
Suffice it to say, I hung out by myself in Europe as he did not want to leave the airbnb. All he wanted to do was lie in bed and look at his phone. He has been significantly depressed from the Pimozide and we are working on getting his Dopamine levels back up through good nutrition and SAMe supplements.
How can this have happened? Do you think the PImozide contributed to this or is this a natural progression of the disease? His respiratory exam was normal mid-March and his strength test had pretty much remained the same so why would he be so exhausted? He says he's winded, but again, his respiratory test showed him at 94%. Does this sound like a progression? Did you or do you, PALS, get this sort of deep exhaustion and need to move to a scooter?
I would like to be more understanding of how he is feeling because I have been trying to make him walk around more. I've been pushing him to walk at least 40 minutes every other day. The next day, however, he's wiped out. Any advice on how to be a better CALS would be much appreciated.
Thanks so much and apologies for the novel.
My husband has just ended his clinical trial (he dropped out March 28th) for Pimozide. Apparently, he's not progressed in his right leg or arm since last September but has only slightly in his left leg, which is his drop foot leg. However, I am finding it harder and harder to believe this, as my husband has started tripping everyday on his drop foot leg.
We had gone on a three week vacation to Europe at the end of March and just got back on Friday, and our very first night in Paris, he tripped over absolutely nothing and fell on his face...hard. Since then, he has tripped or stumbled everyday and it looks like his boot is now too heavy for his foot. He wears an AFO but it seems to be doing no good. Also, he had to be wheeled around in a wheelchair in each airport and walking more than a few minutes is too tiring. We have now ordered a scooter.
Suffice it to say, I hung out by myself in Europe as he did not want to leave the airbnb. All he wanted to do was lie in bed and look at his phone. He has been significantly depressed from the Pimozide and we are working on getting his Dopamine levels back up through good nutrition and SAMe supplements.
How can this have happened? Do you think the PImozide contributed to this or is this a natural progression of the disease? His respiratory exam was normal mid-March and his strength test had pretty much remained the same so why would he be so exhausted? He says he's winded, but again, his respiratory test showed him at 94%. Does this sound like a progression? Did you or do you, PALS, get this sort of deep exhaustion and need to move to a scooter?
I would like to be more understanding of how he is feeling because I have been trying to make him walk around more. I've been pushing him to walk at least 40 minutes every other day. The next day, however, he's wiped out. Any advice on how to be a better CALS would be much appreciated.
Thanks so much and apologies for the novel.