Ed340hp
Distinguished member
- Joined
- Jun 28, 2015
- Messages
- 120
- Reason
- PALS
- Diagnosis
- 05/2015
- Country
- US
- State
- California
- City
- Long Beach
I'll get to the update. The VitalityALS phase three trial ended or all participants and trials in October. All reports and data were due for submission.
They now think it will be March before publication.
The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers did not change.
Now that the trial is submitted I was able to get feedback. At one point in the 48 week double blind trial my Slow Vital Capacity (SVC) dropped into the 70s. By the end of the 48 weeks my SVC was up to 85. Six weeks after the start of the trial extension started, in June with the full dose titration, my SVC was 90. Since then I recorded a SVC of 89 in late August and 88 (today). The expected SVC regression is 5 points per month, without treatment, and my drop is 0.5 points per month. It appears that I received at least some partial dose of the tirasimptev during the second half of the double blind trial, and the full dose during the Vigor ALS trial extension is doing some benefit.
As I said before, general atrophy progression continues. I now push my rolling walker or ride in a wheelchair outside the house. I use the rollator inside as well for balance and ramps. My free walking is like mountain climbing with a three points of contact rule (the wall, a friend, or something rigid to aid balance).
My exercise plan is one or two easy miles on my recumbent inside bicycle, and 1000 steps a day with the walker. This does help muscle blood flow and comfort.
The exercise helps maintaining strength, and possibly breathing, but isolated muscle use does not help overall balance. I wish I had even parallel bars on safety mats to walk and try running and squatting without a big risk of falling damage (but they kicked me out off Physical therapy as they did not wish to discourage the therapy workers who typically see patient improvement in eight weeks and never see the patient again).
My leg strength improves slowly, but communication between mind and muscle remains unreliable. My knees lock or threaten to buckle, so walking is slow and careful, and tough on knees. Arm and hand/finger strength continues to atrophy. The occupational therapy splints seem to help the wrist pinch of the ulnar and carpal tunnel nerves, helping finger muscle range of motion. I can spoon food much better with the splints, so occupational therapy is a recommended benefit.
They now think it will be March before publication.
The goal of continued good breathing numbers is holding steady. My FVC and SVC numbers did not change.
Now that the trial is submitted I was able to get feedback. At one point in the 48 week double blind trial my Slow Vital Capacity (SVC) dropped into the 70s. By the end of the 48 weeks my SVC was up to 85. Six weeks after the start of the trial extension started, in June with the full dose titration, my SVC was 90. Since then I recorded a SVC of 89 in late August and 88 (today). The expected SVC regression is 5 points per month, without treatment, and my drop is 0.5 points per month. It appears that I received at least some partial dose of the tirasimptev during the second half of the double blind trial, and the full dose during the Vigor ALS trial extension is doing some benefit.
As I said before, general atrophy progression continues. I now push my rolling walker or ride in a wheelchair outside the house. I use the rollator inside as well for balance and ramps. My free walking is like mountain climbing with a three points of contact rule (the wall, a friend, or something rigid to aid balance).
My exercise plan is one or two easy miles on my recumbent inside bicycle, and 1000 steps a day with the walker. This does help muscle blood flow and comfort.
The exercise helps maintaining strength, and possibly breathing, but isolated muscle use does not help overall balance. I wish I had even parallel bars on safety mats to walk and try running and squatting without a big risk of falling damage (but they kicked me out off Physical therapy as they did not wish to discourage the therapy workers who typically see patient improvement in eight weeks and never see the patient again).
My leg strength improves slowly, but communication between mind and muscle remains unreliable. My knees lock or threaten to buckle, so walking is slow and careful, and tough on knees. Arm and hand/finger strength continues to atrophy. The occupational therapy splints seem to help the wrist pinch of the ulnar and carpal tunnel nerves, helping finger muscle range of motion. I can spoon food much better with the splints, so occupational therapy is a recommended benefit.
