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  1. Grace89

    Peg Pain

    I'm a week into having the peg put in...this has been absolute hell. The Drs waited until I reached a certain weight when I think they should have been watching the strength of my core muscles. I am staying so drugged to just deal with it all. The dr increased my gabapentin and baclofen to help...
  2. Grace89


    4 weeks ago I started 5mg of baclofen once a day. I take it at bedtime and it quickly knocks me out. I also take 300mg of gabapentin(been on it for 5 months). I started noticing that I was feeling very weak. My legs are very weak, my balance is off, my hands are weaker and my twitching has...
  3. Grace89

    DC-Advocacy Day

    Who is in town?
  4. Grace89

    SSDI Application/Medical Leave

    Hello All! I'm curious if you can help me with this. I am giving my notice to quit work and my employer is working with me to meet my hours for FMLA eligibility. In doing so it is falling on the end of the month. There is a possibility that I may be able to quit a few days before the end of the...
  5. Grace89

    Chest support/abdominal binder

    I need something to offer support for my chest. My OT and PT mentioned an abdominal binder but they were concerned how it would effect my breathing. When I walk I'm having muscle constriction on the left side of my chest. I've learned if I use my arm and hold my chest that the pain will stop...
  6. Grace89

    Prescription Savings

    Just sharing.. I downloaded the app and I'm going to pick up my meds today. My Neurontin was running me $90 a month and this app says $11.47. I have prepaid on the app and I'm to show the digital card to the pharmacy and have them use this information instead of my medical insurance. I also...
  7. Grace89

    Trilogy or Bipap

    The Trilogy machine was prescribed for me by my neurologist due to decrease in breathing while laying down. It is setup like a bipap machine for me. (no sleep study performed, just clinic PFTs) My neurologist that I continue to see that was my third opinion does not agree with the Trilogy due...
  8. Grace89

    Advocacy Conference 2016

    Is anyone planning to attend the ALS Advocacy Conference in Washington,D.C.? May 8-11
  9. Grace89


    I'm curious what things others have done. I don't write(physically pick up a pen) much My mother passed away from cancer a few years ago and I love looking back at things she wrote and to see her handwriting. So it makes me think that I need to start writing to my girls. I've also thought...
  10. Grace89

    Mayo Clinic in MN

    I got the call Friday that my neurologist got the referral in at Mayo and they will see me on 1/7. Unfortunately that is a Thursday and my testing they said would be multiple days. I was told to plan to be there a week. I'm looking at hotels and flights just trying to plan. Anyone familiar with...