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  1. G

    Six Months - Many Symptoms - No Answers

    Hello, Like many others I have been visiting this message board after experiencing symptoms that led me to the internet - that led me here. I have read many posts and many stories on this site and have much respect for this wonderful forum. I will try not to make this a long and hard to read...
  2. Clearwater AL

    The beach bar...

    Just something to read… in the “After 5 Forum Pub”. It took me a few days to put this together. My writing skills aren’t what they used to be. After Spring Break and for the rest of the year our beach bar often reminded me of a Chameleon. It was a side gig I got involved with. From opening...
  3. D

    Cold Hands

    My hands are very cold today and purplish here and there. Also getting cold at night even with 2 or 3 blankets on.
  4. chally

    Update on Hospice

    Finally got the BS cleared away and now officially in hospice care, morphine, Ativan and all what comes next Got good nurses coming in, got good aides night and day to give Beth much much needed rest. Can’t type my own texts so alot less frequent correspondence , sorry! Things have sped up...
  5. C

    Concerned about leg weakness and other symptoms.

    I'm hesitant to post here because of the seriousness of the disease in which I'm extremely anxious over, but I need guidance: I've been battling a bulging disc in my lower back since 2007 that gets irritated a few times a year. Flash back to middle of February and I aggravated it again, but...
  6. Lkaibel

    The Next Part of the Journey

    So, here I am exactly one week out from my husband's death. It was really only after he actually passed that I have started to realize the absolute hellfire we went through together. There was beauty, love, and moments of joy for sure. I am very sure I never felt closer to or loved another...
  7. G

    Help - newly diagnosed

    I'm a bit lost - finally third neurologist confirmed I have ALS. I am using walker now - wondering if I should go ahead and purchase a used wheel chair on Craig's List. Also - in a great deal of pain at night - horrible cramps - given muscle relaxers - still little help. They tell me ALS is...
  8. J

    My symptoms, my fears

    Hello, first of all thank you for letting me join this forum. I’ve been dealing with some symptoms in the last month and I wanted to ask your opinnion about it. I’m 40. For some time I had some numbness in my hands, legs and upper lip so I had an appointment with neuro to see if something...
  9. K

    Trilogy Settings with Progression

    My PALS has been using a Trilogy for the past year. His latest FVC was 26%, with MIP at 20 and MEP at 32. We can tell his weakening muscles continue to affect his breathing, just since Clinic in February. He had some issues with air hunger at night and increasing EPAP from 6 to 8 took care of...
  10. S

    New caregiver

    So sad. Husband diagnosed end of December. He's very used to being in charge and making all the decisions. I am a RN/NP. So I know a bit about caregiving. He fights me on all the ways to do things. Slowly he is beginning to listen to me but it's frustrating. I only seem to cry when...
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