advocate

  1. affected

    Australia's Freeze MND

    Neale Daniher is a well known sports face in Australia. He was diagnosed with bulbar onset MND (ALS) last year and has been an incredible advocate for disease and started his own foundation and has been raising millions that goes directly to research. This is the latest video he has made...
  2. M

    ALS Awareness Month

    The MDA and ALS association should be ashamed of themselves along with MLB for not partnering up to advocate for this disease this disease is more known as Lou Gehrig disease, one of the greatest players in baseball. So MLB on mother's day can make this grandiose statement for breast cancer...
  3. tripete

    To all who are questioning Do I have ALS

    There is a ton of information on this site that you can access to try and get answers. And while posting questions is allowed, until you are diagnosed it becomes a burden upon those who are caring for people with ALS and it is something that most of us with ALS do not want to deal with. We all...
  4. D

    ALSA’s Advocacy Day and Public Policy Conference

    To all PALS and CALS who have experienced shortfalls in the provision of DME and home health services (meaning, I suspect, all of us), you may be interested in knowing that these huge problems are not on the list of the ALS Association’s priorities for its “Advocacy Day and Public Policy...
  5. Nuts

    TMI on FB?

    My sweetheart was always very private about his health issues before ALS. This has changed completely, and he is now VERY open about things such as potty problems... He has been very quiet about the downside of ALS for the past two years on his FB page, but friends have asked for updates and...
  6. Gracious99

    PEG tube update + question

    Raymond did fine, all the discussions about oxygen and ALS really helped us today, I was able to be an informed advocate for him, and shared info with a couple of great nurses who hadn't dealt with ALS patients before, so a huge thank you! Now a practical question, what do we do with this tube...
  7. D

    First Post

    I have been reading the posts on this website for several months. My husband was diagnosed with ALS in May 2014. It encourages me to read here and realize that I am ok with how I am feeling and dealing with this everyday. I pretty much have to do everything for him now. The reason I wanted to...
  8. S

    Is this ALS

    I can't believe that I am posting here, I have been reading threads and worrying about ALS for months. I am a 33 year old female. In October 2014 I was experiencing extreme neck and shoulder pain, in addition to hand and arm pain that I thought was resulting from a writing intensive job. I was...
  9. 3

    overwhelmed

    My husband was just diagnosed with ALS-FTD and it is so scary and overwhelming and just oh so sad. What do you think about seeking a second opinion? Anyone else out there working as a health care provider seeing my own patients and now caregiving and advocating for husband? It is all so...
  10. 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...
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