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  1. M

    Once on Medicare, is it worth keeping cobra coverage?

    Hi All, This is a more specific version of a question I asked a while go, so bear with me. I will soon be leaving my job and plan to apply for SSDI and Medicare. My question is whether once I get on Medicare, is it worth keeping my cobra coverage health insurance through my work? Some people on...
  2. M

    Recs for a biological dentist?

    Hi All, I’m looking for recommendations for an experienced biological dentist in the NYC or Northeast region to remove my silver amalgam fillings. So far the only really expert ones I’ve heard of are Gerry Curatola in NYC who appears to be very expensive, and Blanche Grube in Scranton who is...
  3. M

    Medicare vs. Cobra coverage?

    Hi All, I’m realizing with increasing weakness in my hands, arms, and legs, I need to start researching home health care options. I’m currently still working, though soon I will go on short term disability, which will last for a few months until SSDI kicks in. Then, as I understand it, within 5...
  4. M

    Suggestions for healing retreat centers?

    Hi All, Wondering if anyone has any suggestions for healing retreat centers to go to located in a beautiful natural setting? I’m still pretty early on, so I am lucky enough to have my legs and arms still working. Looking for a place that has meditation, gentle yoga, nature walks, that kind of...
  5. M

    How to gauge exercise?

    Hi everybody, I had a question for folks about the complex issue of exercise. I’ve been given the general advice to exercise moderately, not too much or too little. But I’m having trouble knowing how best to gauge that? What signs or benchmarks do people use to gauge if they are exercising too...
  6. M

    How disabled for SSDI?

    I wanted to ask if anyone knows how “disabled” you have to be to apply for SSDI? Here’s my situation:I was diagnosed a few months ago. I don’t like my job (though the $ and insurance is good) and my main priority now is to use my time to reconnect with friends and family. So I’d like to apply...
  7. M

    Precision Medicine Program?

    Hi Everybody, I wanted to ask if anyone has participated in ALSTDI’s Precision Medicine Program? Basically, you track your symptoms each day. It seems like it could be a lot of work and not quite sure of the value. I guess you get a sense of how fast you’re progressing? But do I really want to...
  8. M

    Radicava vs Nurown trial? Seeking perspectives

    Hi All, I am seeking PALS perspectives since I am getting different opinions from different neurologists. I may have a chance to enroll in the Brainstorm clinical trial. My current thinking is that having only a 50% chance of getting NurOwn is not worth giving up the option of Radicava since I...
  9. M

    anyone know of support groups specifically for the newly diagnosed?

    Hi All, I have been recently diagnosed and I am looking for a support group, virtual or in person, for those who are newly diagnosed. I have found that my local ALS support group through ALSA focuses on issues of people who have progressed much further. While it is good information to have in...
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