captaingary
New member
- Joined
- Jul 20, 2018
- Messages
- 4
- Reason
- PALS
- Diagnosis
- 06/2018
- Country
- US
- State
- fl
- City
- micco
Hi All
. Just a quick update and a question.
All is OK with me for now. 8 months in and still standing, unsteady, but standing. Use a cane around the house for balance and a rollator for trips outside the house. Just gave up my driving privileges voluntarily. Can still drive OK but there is a liability issue. If I were to be involved in an accident , even if it were not my fault, and they discovered I had ALS the lawyers would have a field day.
Tire easily. Have to force feed my self to keep weight on. 3000 cal. per day. Mental function seems unaffected so far. So far ALS has been tolerable, not fun, but doable. I know things will change , but I have to remain positive.
The question: Going to start a trial of CK-2127107 or Reldesemtiv next month for 12 weeks Anyone have any experience with it?
. Just a quick update and a question.
All is OK with me for now. 8 months in and still standing, unsteady, but standing. Use a cane around the house for balance and a rollator for trips outside the house. Just gave up my driving privileges voluntarily. Can still drive OK but there is a liability issue. If I were to be involved in an accident , even if it were not my fault, and they discovered I had ALS the lawyers would have a field day.
Tire easily. Have to force feed my self to keep weight on. 3000 cal. per day. Mental function seems unaffected so far. So far ALS has been tolerable, not fun, but doable. I know things will change , but I have to remain positive.
The question: Going to start a trial of CK-2127107 or Reldesemtiv next month for 12 weeks Anyone have any experience with it?