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  1. Mike in Maine

    Couldn't breath ended up in the ER

    As most of you know, I have UNM ALS and it is very slow progressing, again as most of you know one of the major symptoms of UMN ALS is spasticity. Well I have always had very bad spasticity, have a baclofen pump (385 micrograms day) works pretty well on my lower body, but does very little for my...
  2. Mike in Maine

    Need a few suggestions

    All, I know the title is misleading need some help here. Music is my escape and my downloads on my I-Pod (yes I still use one) and phone are getting stale. I listen to mostly classic rock (60's and 70's) some modern country cause it sounds just like what we used to call Southern Rock back in...
  3. Mike in Maine

    Sleep Study last night

    Hi All Had a sleep study last night, complete torture. Getting a BiPap for use at night. Do any of you use one? Do you get use to it? Thanks Mike P.S. Mark they said no more breads so the new goat is out. mess's with the seal. New ugliest dude on block can't cover it up anymore
  4. Mike in Maine

    Mexiletine HCL for cramps

    I was talking to my VA Doc about cramps I had been having and how painful they were. He recommended this drug that he said was in phase 3 testing to relieve cramps in ALS patients, he put me on a low dose and it has really worked. Most of my cramping is gone and I have had little or no side...
  5. Mike in Maine

    I;m back after some dark times

    Hi all Sorry I haven't been posting and adding to posts. I just starting to come out of a not good place when I thought I had accepted the fact that I had ALS, I had not. This really caused me to crawl inside myside myself and stay to myself. It took a hard talk from my wife (more of a a**...
  6. Mike in Maine

    Lack of coordination and bulbar questions

    Question for all, I'm having a marked increase in my lack of coordination. Do you believe this is due to loss of muscle strength or loss of muscle control. Next subject having real bulbar issues, Nudextra and the other meds I've tried really come with an increase in spasticity and spasms...
  7. Mike in Maine

    AFO Fitting

    Went for my composite AFO fitting today, tried a couple different types. Ended up with one that encircles the whole upper calf, wow felt amazing. Pick it up next week, I get to say goodbye to the cane. Can't wait. Mike
  8. Mike in Maine

    Lack of Energy

    This may not be my smartest question (I've asked many). Do any of you run into days where you have a massive energy outage. I get them with no pattern, just some days it takes everything I got just to move around, never mind leave the house. It is not depression, it is just no energy. Can't...
  9. Mike in Maine

    Baclofen pump refill

    Have any of you had your pump refilled? How does the process go? Having done for the first time later this month Thanks Mike
  10. Mike in Maine

    anxiety

    Mark, Decided to start a new thread on this. Man sorry to hear about the fall, hope you're doing better. When did you fall, what were you doing? My left ankle and calf have gone down hill a lot faster then I thought they would. Using a cane whenever I go out except when I walk the dogs. Just...
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