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  1. danrising

    pain and burning skin in butt from sitting, lying in bed

    Unable to turn in bed, constant pain, cannot get comfortable. Spend the day and night changing sleeping and sitting places in order to get comfortable. I have a Quantum 6 Edge power chair with ROHO cushion. I let air in and let air out. Feels like I'm sitting on golf balls. After lying in...
  2. danrising

    Ongoing Clinical Trial of MN-166 in ALS

    I started this trial in October. Dr Brooks in Charlotte NC
  3. danrising


    Helping the Motor Neurons in the Brain Also Helps Those in the Spinal Cord - The ALS Association
  4. danrising

    Protein misfolfing

    Disease Spread in Mouse Model Puts the Spotlight on Protein Misfolding in ALS - The ALS Association Disease Spread in Mouse Model Places Spotlight on Protein Misfolding in ALS October 10, 2014 In a study supported by The ALS Association and published in the journal Acta Neuropathologica...
  5. danrising

    One year good and bad.

    Today is my one year anniversary. I'm not sure if it is a time to celebrate? A lot has happen in the past year. I am in a wheelchair about 75% of the time. Can only walk short distances, have very little upper body strength, can hardly carry a cup of coffee. Can not dress or bath myself with the...
  6. danrising

    SAH Grant

    Starting construction on new bed/bathroom addition tomorrow. The VA Rep has been great in helping to get this started. :razz:
  7. danrising


    Will the VA provide you a bed for your home?
  8. danrising

    New Drugs?

    My Doctor told me Thursday at Clinicals to be on the lookout for an announcement on Monday or Tuesday about a new medicine to be approved for ALS..Anyone else heard this?
  9. danrising

    Riluzole probems?

    I have tried taking Riluzole several times. I would start out taking one a day for two weeks then move up to two a day. After a week or so I would stay so tired all the tim and my shoulder and elbows would hurt at night. I would back off to one a day and still had the fatigue so I would quit...
  10. danrising

    New to site

    I was diagnosed in October 2013. Started with dropped foot on right side and loss of motor skills in left hand. I stopped running my business and put my son in charge of running it and I'm retired. Things seem to be progressing way to fast for my comfort, Both legs are getting weaker and both...