advocate

  1. gooseberry

    home health training

    Went to a womens wellness event Saturday and met the nurse in charge of a new home health group in my area. Asked if they were knowledgeable about ALS....oh, yes, she answers. So, playing devils advocate, I asked a few questions...here they are.... If the patients oxygen saturation levels are...
  2. Atsugi

    Speech Generating Device and Medicare

    A little while back someone posted a link to a form letter we could send to our congress critters complaining about the new Medicare rule that prevents PALS from activating their speech generating devices. I received response back from some senators, and the responses didn't even address the...
  3. K

    Occupy als let us try

    if you have Facebook join the group occupy als let us try. we are planning a date to Pickett outside the fda home office to help get the right to try act passed. if you want to truly advocate and truly try and fight for ur life then please join the group and be prepared to make history. stop...
  4. I

    Having some real issues do i have als

    Hello everyone. I would first like to say that to each and everyone of you battling this disease my heart and prayers are with each and everyone on you. Only God can give us the strength to deal with these devastating diseases and I am hopeful that He can lead you through with dignity and hope...
    • Inhopeofacure
    • Thread
    • advocate als als? anxiety awareness children death do i have als donations emg family fear heart issues kids lead life muscles nose problems questions scared slurred speech speech swallowing symptom tongue weakness website
    • Replies: 13
    • Forum: Could this be ALS?
  5. R

    CMS Medicare Rules Changes - Equipment

    An ALS advocate stumbled across something earlier this week that has several of us concerned. Effective April 1, 2014, the Medicare CMS rules for Speech Generating Devices (SGDs) are changing. They are being classified as durable medical equipment that will fall under a “capped rental rule.”...
    • rknt50a
    • Thread
    • aac advocacy advocate als equipment family hope hospice information medical medical equipment medicare petition power speech support technology urgent wrong
    • Replies: 15
    • Forum: General discussion about ALS/MND
  6. M

    ftd and obsession or fixations on a person or sex

    I know that this is a very tough subject. I hope that it does not offend anyone, and I mean it to be more of a reaching out to see if there are others that seem to have the same issues. 5 1/2 years ago, after my husband went on a vent, we tried to keep our sex life going. He could not move...
    • mrvaughan
    • Thread
    • advocate als angry caregiver children drugs eating family food ftd health hope insurance life neurologist nurses pain research shower vent work
    • Replies: 21
    • Forum: ALS and frontotemporal dementia
  7. D

    Got all the way to the operating room and dr. wouldn't put in PEG -- advice?

    Just spent a horrible morning at our ALS Center hospital. Fred got all the way to the operating room and the radiologist wouldn't do the procedure because Fred couldn't lay flat and breathe. We told everyone we could think of in advance about Fred's respiratory status and that he needs to sit...
    • dianepage
    • Thread
    • advice advocate als cell conversation fvc ice neurologist peg respiratory travel
    • Replies: 3
    • Forum: PEG feeding tube help
  8. S

    Seeking your Advice, What to do Next...

    Okay this is the second attempt at writing because my first was interminably long. My question is this: What tests do I ask for next, which direction do I go next with my primary care doctor to rule out ALS or know that it is ALS. I either need to move on away from the "fear of possibility"...
    • SRES
    • Thread
    • ability advice advocate age allergies als als? awareness bfs cold diabetes diagnosis fasciculation female foot health information insurance lead life medical motor neuron disease muscle muscles ramp symptoms tests tongue twitches twitching vitamin d walker what to do next? work
    • Replies: 3
    • Forum: Could this be ALS?
  9. E

    The ALS Association is pleased to extend the opportunity for ALSTUN

    We will have a complimentary Exhibit Table. "The ALS Association is pleased to extend the opportunity for ALSTUN to participate in The 2013 ALS Association Advocacy Day & Public Policy Conference Exhibitor’s Foyer. This year’s single-day, Exhibitor’s Foyer Program will be presented Friday, May...
  10. C

    Undiagnosed MND

    Hi everyone, and thanks for the warm support that I have already received on this forum. I am just looking for support and encouragement as I am feeling really down today. I currently have an Undiagnosed MND that has caused my chest to collapse which has given me severe trouble breathing. It...
    • CRR10
    • Thread
    • advocate als back bipap brain breathing clinical clonus death diagnosed diaphragm emg family frustrated insurance lead life medical mnd muscle peg problems respiratory respiratory failure shoulder support sympthoms test undiagnosed unknown vent venting weakness work
    • Replies: 5
    • Forum: Newly diagnosed
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