Search results for query: *

  • Users: Ed340hp
  • Content: Threads
  • Order by date
  1. Ed340hp

    No help forum so how do you...

    How do you change the font size to make reading this website easier? My hands cannot work the zoom. Is there a setting to enlarge the default font size?
  2. Ed340hp

    Tirasimptev continues VIGOR ALS

    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...
  3. Ed340hp

    VigorALS - Tirasemtiv Trial Extension

    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...
  4. Ed340hp

    ALS Therapy Development Institute Particiption

    Is anyone else registered and participating in the ALS Therapy Development Institute Precision Medicine Program? I ask because there are open participant spots (280 filled, 20 open). I don't know if participants will be able to benefit from the neuron cell lines grown from the selected...
  5. Ed340hp

    Tirasemtiv Update - Final

    I finished the Tirasemtiv Clinical Trial. Two weeks open label, to test reactions. 48 weeks double-blind trial. An extra two weeks due to scheduling. My breathing numbers have not dropped for the past 24 weeks, and my leg and arm strength improved over the past 18 weeks (slightly). My small...
  6. Ed340hp

    Tirasemtiv Update take two

    40 weeks into the trial. Breathing numbers still steady. Weaker, but maintaining weight. Hand atrophy is making me miss opposable thumbs, but I can still manage a beer two handed. I have a walking stick, and high steps may as well be mountains, but I am still going. Stiff all the time, and...
  7. Ed340hp

    AETNA Disability Insurance - Poor Service

    I am looking for help with contacts at AETNA. If anyone has a contact at AETNA please post it up or PM me the info? I have been diagnosed with ALS for a year, confirmed last May 2015. I worked through the end of the year, and filed for Disability Insurance with my Last Working Day on January...
  8. Ed340hp

    Cool vette

    OK. It's been running for a month or so. Tuning the little things, with my son usually turning the wrenches. I think my son gets tired of my OCD with timing, the shifter gate, and carb adjustments. The paint is still reasonable at 20 feet. We added baby moons to the rally wheels for...
  9. Ed340hp

    Tirasemtiv Updates?

    The history here looks sparse. Any updates? I started with the initial open label dose this week. The qualifying visit seemed to be my clinics first. I am apparently the local test subject, so the visit took awhile to work out the details. My muscles seem a little more responsive, and at...
  10. Ed340hp

    pocket button multitool and airport security

    Has anyone taken one of these pocket dressing tools through airport security? Buttons and zippers are manageable much better with the tool, but can I take it with me on an airplane? Is there allowances for limited mobility PALS and others who lose hand dexterity and strength? Recommendations...
Back
Top