Ed340hp
Distinguished member
- Joined
- Jun 28, 2015
- Messages
- 119
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- US
- State
- California
- City
- Long Beach
I am still upright and survived six weeks of travel with family, and three weeks to get the kids back at school and the check ups at the ALS Clinic. My end of the VitalityALS double blind trial thread was closed, so this will be a new update thread.
The last posts were to follow up on the Trial extension where I am guaranteed to get the Tirasemtiv. I weathered the eight weeks to ramp up to the full dose, before flying to Europe with my family.
I'll get to the general topic.
The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers did not change.
Atrophy progression continues. Being pushed everywhere in a wheelchair did not help my exercise plans much, and maintaining strength and balance suffered.
I am using a walker more now, the walking stick less. Confidence took a hit as much as strength. I have recovered most of the leg strength, but communication between mind and muscle is not as confident. Hand and arm strength took a bigger hit, impacting more daily tasks than the legs.
I dropped caffeine before the trip. It helped.
I will update more if there is interest.
The last posts were to follow up on the Trial extension where I am guaranteed to get the Tirasemtiv. I weathered the eight weeks to ramp up to the full dose, before flying to Europe with my family.
I'll get to the general topic.
The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers did not change.
Atrophy progression continues. Being pushed everywhere in a wheelchair did not help my exercise plans much, and maintaining strength and balance suffered.
I am using a walker more now, the walking stick less. Confidence took a hit as much as strength. I have recovered most of the leg strength, but communication between mind and muscle is not as confident. Hand and arm strength took a bigger hit, impacting more daily tasks than the legs.
I dropped caffeine before the trip. It helped.
I will update more if there is interest.