Recent content by sadiemae

  1. sadiemae

    Visiting a friend with als for the first time

    Hi, I don't come here much anymore, but a quick story. My husbands childhood best friend came to visit him in Nov 2012. They hadn't seen each other in over 25 years. It was a great visit. My husband died in Feb 2014. Flash forward to May 2015. His friend who visited was DX with ALS.
  2. sadiemae

    VA Automobile Allowance

    You are also able to get a new Van after the first one. No grant money, they pay for the conversion though. So, if you trade your first Van in for $20,000, you can get a Van that is worth $20,000, and the conversion is added on at no charge. You are allowed two conversions every 4 yrs.
  3. sadiemae

    Shane's brace input?

    It was the only one my husband would use, never had a problem. Cost was only $65 when we bought it though, I believe 2011
  4. sadiemae


    Meds for thi(PBP) are Nudexta, if you can afford it, or Amytriptilyn(Elavil)which is used off label to help control it. Elavil also helps with drooling, is a mild pain reliever and antidepressant, and sleep aid
  5. sadiemae

    Show Me State

    Check out BFS, Benign Fasticulation Syndrome. They also have a Forum similar to this one.
  6. sadiemae

    Dad out in the Cold

    A forum called BFS, (Benign Fasticulaton Syndrome) would be a good site for you to investigate
  7. sadiemae


    If he has 90 days consecutive Active Duty days that is Not for training he qualifies, regardless of whether he was in Vietnam. Get a different service rep
  8. sadiemae


    If you are on F B, we hav a great caregivers group, and also someone started a FTD ALS group. Do a search for ALS CAREGIVERS
  9. sadiemae

    Equipment from the VA

    Stu does pay all shipping costs
  10. sadiemae

    Equipment from the VA

    Stu with ALS GUARDIAN ANGELS is the place to donate all equipment to, in my opinion.
  11. sadiemae

    Great News for Vets; Good News for Others

    VA was good for the few months we had it. My husband was Army National Guard, during peacetime, and Active Duty was for training only. His was split training, and so he had two rounds of vaccinations. He worked full time for the Guard for six yrs and a yr after we got benefits, they realized...
  12. sadiemae

    2012 Permobil C300 Loaded, Seat Elevate, Recline, Leg Rest, Tilt. Worth $46,000

    just my 2 cents worth. 99.9% of people needing a wheelchair for ALS are going to get it through Medicare. If you can benefit through a tax write off, consider donating. ALS GUARDIAN ANGELS is mt charity of choice
  13. sadiemae

    Trouble finding Dr in Chigago to

    Dispensaries aren't open yet (Jan 2015), and clinics they have called are not accepting new patients.
  14. sadiemae

    Trouble finding Dr in Chigago to

    I believe doctors are are associated with ALS/MDA Clinics
  15. sadiemae

    Trouble finding Dr in Chigago to

    Posting for a friend. She is trying to find a Dr in Chicago to certify her husband for Medical MJ. In Illinois, you have to have a Dr you have you a relationship with to certify the need. Her husbands ALS doctors won't do it, and those are the only Dr's he sees. Any ideas?