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  1. akaal

    PALS roll call Wednesdays ( or whenever)

    Still hanging on. Peace and Love. Andy
  2. akaal

    Is early onset indicative of Fals?

    My family has the SOD1 A4V variety. I have lost a sister at age 54 and a brother at age 47. We have lost 30 family members going back to the early 1900's. The youngest I know of was my sisters daughter (my niece) who was diagnosed at age 27, and died at age 30. The avg. age in our...
  3. akaal

    Medicare coverage of trilogy in hospice

    When I singed up for hospice care through Bayada, I had already been using the Trilogy. They asked me in a subtle way if I would give up the Trilogy for a regular bi-pap. I told them I was not willing to give up the Trilogy, and if it came to that I would probably not sign on with them...
  4. akaal

    PALS roll call Wednesdays ( or whenever)

    getting a little weaker. especially in my hands. not looking forward to not being able to use my hands. not walking I can handle. not using my hands would be depressing, but I guess I will adjust.
  5. akaal

    akaal update

    Thank you Charlene. It is my opinion through experience and reading scientific studies that B12 (methylcobalamin not the synthetic cyanocobalamin) helps if taken very early on. At least for me. I can't speak for others who have tried this. Peace also to you; Andy
  6. akaal

    akaal update

    I should add that starting B12 earlier is important. It seems to have less effect 2-3 years after diagnoses according to a study I read. Andy
  7. akaal

    akaal update

    No injections. I'm on hospice care and it's not something they would pay for. I don't know what the cost would be out of my own pocket? I just get it from natural sources. Food & supplements. It is my personal belief that B12 helps, possibly slows progression, but this is only my opinion. I...
  8. akaal

    akaal update

    Because my onset (Respiratory) is somewhat rare, the doctors were looking at COPD because I was a smoker. However my lungs were pretty clear considering. I was also having trouble with fatigue which my PCP attributed to the statin drugs I was taking for high cholesterol. This was in the...
  9. akaal

    akaal update

    Hi everyone. I first joined this group in 2010 a few months after the passing of my oldest sister from fALS. I have stopped in now and then to read but have not posted much, so I will just give you a brief update of how things have been. In February of 2014 both my younger brother and...
    • akaal
    • Thread
    • age back brother chair diagnosed fals family fatigue free muscle muscles onset questions respiratory respiratory onset sleep sod1 trilogy update
    • Replies: 8
    • Forum: General discussion about ALS/MND
  10. akaal

    PALS roll call Wednesdays ( or whenever)

    Pressing on. One day at a time.
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