karzy81
Active member
- Joined
- Nov 7, 2017
- Messages
- 52
- Reason
- Loved one DX
- Diagnosis
- 03/2018
- Country
- CA
- State
- ON
- City
- Thornhill
My dad was diagnosed this past March with ALS but we are sure he had it for about a year or so prior. He just went back this week for his three month check and his breathing went from 86% to 92%. They said that is rare. Anyone else experience that?
With that being side he has become weaker in the legs and in the upper body. He walked to his last appointment three months ago with a cane and now we had to wheel him in (he can use a walker but the wheelchair is much easier ). Just thought I would share the experience and see if anyone else had progressed in regards to their weakness but stayed the same everywhere else. I should also mention he is eligible to start in phase 2 of the Pimozide trial or in phase three of another trial that’s in its third phase. The one in phase three is some kind of heart medication, I think it’s called Levosimendan. I don’t know if anyone knows what I’m talking about. This is in Toronto Canada.
With that being side he has become weaker in the legs and in the upper body. He walked to his last appointment three months ago with a cane and now we had to wheel him in (he can use a walker but the wheelchair is much easier ). Just thought I would share the experience and see if anyone else had progressed in regards to their weakness but stayed the same everywhere else. I should also mention he is eligible to start in phase 2 of the Pimozide trial or in phase three of another trial that’s in its third phase. The one in phase three is some kind of heart medication, I think it’s called Levosimendan. I don’t know if anyone knows what I’m talking about. This is in Toronto Canada.