Recent content by Grace89

  1. Grace89

    Miss Wheelchair Mississippi 2018

    Thank you all so much!! ��
  2. Grace89

    Supplies to give away...

    Hello! I am interested in the feeding bags. Please let me know cost. I currently have to purchase as medicare will not cover them for me. I'm always trying to find these!
  3. Grace89

    Peg Pain

    Oh how I wish I could have the good pain meds. In my past have had issues with codeine, dilaudid, and recently with the peg surgery liquid hydrocodone. When I take these I have esophageal spasms and can't breathe. I've always said I'm allergic to codeine and dilaudid but it looks to be more...
  4. 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...
  5. Grace89

    Extreme dry mouth?

    I am dealing with this also. It is worse at night. The dryness will be so bad that I cannot swallow at all. I wake up and have to drink water to be able to swallow. The dryness is not just in my mouth but far down in my throat also. I also struggle with my food and eating something that is...
  6. Grace89

    Parents with ALS-need advice on trying to encourage wife

    Geoff, As a mother with ALS I can tell you that no amount of Meds will take away the hurt and the frustration. I deal with it daily as I try to do all I can for my 5 and 8yr old daughters. It is so hard for others to understand our need to be mom and to not be able to actually do the mom...
  7. Grace89

    Progression/Baclofen

    Mr Dr told me to stop the baclofen and we would discuss other options at clinic in a few weeks. I was just curious if anyone else has experienced this with this medicine. Looks like this could just be a progression period for me :(
  8. Grace89

    Progression/Baclofen

    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...
  9. Grace89

    ALS CLinic SW Louisiana

    In my case it was waiting for all of the tests(lumbar puncture and labs) to come back. My EMG didn't return strong enough data that was suggestive of ALS at the time. So this may not be the case with your wife, I'm not sure. I was able to return two weeks afterwards for results and meeting with...
  10. Grace89

    ALS CLinic SW Louisiana

    Hello Neighbor! I am in Mississippi. I go to The University of Mississippi for clinic (they were my second confirmed diagnosis). I chose to pursue a third diagnosis at Houston Methodist. I see Dr Pleitez. She is amazing!! The entire Neurology dept at Houston Methodist is great. The only downfall...
  11. Grace89

    Calling all PALS! ( PALS only please, thank you)

    I have been nonstop lately. I gave my notice at work 2 weeks ago, that was harder to do than I thought it would be. I spent last week in DC. That trip was eye opening and exhausting. I met so many people and I left feeling like we made our voices heard on capitol hill. I flew in and went...
  12. Grace89

    DC-Advocacy Day

    So glad I got to meet you Chally! For some reason the picture is sideways. Sorry I missed you Becky.
  13. IMG 0830

    IMG 0830

  14. Grace89

    DC-Advocacy Day

    Becky please stop me to say hello if you see me. I am in a red powerchair. I am wearing a black jacket with a blue/black/orange printed knee length dress. We rested for a few minutes after being on the hill from 730-530 today. We are going to find dinner.
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