advocate

  1. 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...
  2. 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...
  3. 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...
  4. 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.”...
  5. 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...
  6. 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...
  7. 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"...
  8. 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...
  9. 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...
  10. J

    First Clinic Appointment Qs

    Let me preface by saying I am beyond frusturated. My mom was diagnosed (finally) on 2/18/13. I was in shock and didn't really get all the info my dad was giving. So I called them yesterday. I knew the neuro had referred them somewhere... I assumed it would be the ALS clinic here in Dallas...
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