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Ed340hp

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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.
 

Nikki J

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Thank you for sharing yes please do continue to update. How long will you continue to get the tirasemtiv?

Hope your trip was great
 

Ed340hp

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Messages
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PALS
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US
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Long Beach
Thank you for sharing yes please do continue to update. How long will you continue to get the tirasemtiv?

Hope your trip was great
The trial extension is reported to continue without a scheduled end, unless the double blind Clinical Trial results reflect it is ineffective.

It appears to be effective with muscle function preservation for motion as long as neuron structure is functional, so the treatment benefit goal should prove positive. Hopefully it will, with the greater trial population, and the trial results will be published this year. If it does meet the FDA approval requirements I will continue to get the drug.

It took a few extra weeks to find a tablet schedule that did not impact my snacking caloric needs, and adjust to the jitters at the full dosage. Being in strange locations, different Hotels, may have made the adjustment more difficult.

The trip was good, but I could write a critique on the fallacy of Disability Accessible Hotels and specifically bathrooms. Shower stalls with tall step curbs were equally as bad as vast roll-in marble shower rooms with zero support handles and hard corners that endanger the disabled and caregiver safety once water is added to the slick surfaces.

I also learned to despise cobblestones.
 

nightowl

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Aug 19, 2017
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This is great news. Thank you for updating! I will have to keep track of this medication.
 
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