• William Brennan became a registered member 1 year, 7 months ago

    • Hello William,

      Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even suggestions, just let me or Amanda (who shares co-moderator duties with me) know, and we will do our best to help you.

      Again, thank you for joining our forum – – We look forward to your comments and I look forward to chatting with you! Dagmar

      • Hello and ty! Yes, I have some questions.
        I was diagnosed with end stage ALS Nov 2nd 2019, was told that nothing could be done about the ankles n feet being swollen ( it wasn’t from my low sodium level ) it was the progressive nature of the disease in its end stage, etc , basically I was politely told to go home, have someone around, and expect to die, soon!
        😳
        My mother, who’s almost 80 and who is a health nut, brought over a tiny loaf of Artisan bread ( loaded with 8-10 superfoods like flaxseed, quinoa seeds ) and I found and watched some health documentaries ( What The Health / Forks Over Knives / The Game Changers / Cowspiracy/ The C Word ) and I started my Vegan diet immediately.
        Within 3 days all my allergies were gone, by the first 30 days I had lost almost 30 lbs of unhealthy fat, and eventually all my symptoms of ALS virtually disappeared!!
        My nerves had rejuvenated so much in just a few weeks that by the time my 2nd opinion testing of ALS was done ( in Iowa City, Iowa ) that time I actually found out there was electricity being sent through those wires that were attached to those big needles that they put in various muscles throughout my body and when they cranked up the juice, it was torture! ( I moaned n groaned )
        Iowa City said they “couldn’t confirm but couldn’t deny that I have ALS” ( tests were inconclusive )
        From what I’ve researched, I’ve definitely been able to reverse my ALS through the Vegan diet, but also read about a study that says there are 45 other people who’ve reversed their ALS.
        I’ve regained ability to talk and walk, again and haven’t needed a wheelchair in over 6+ months! ( TY, GOD!! ) but late Thursday / into early Friday, I had respiratory distress, which unlike before, this time it was out of the blue, all of a sudden, no warning, and it left me gasping for air, almost losing consciousness for 2 minutes before my lungs started opening up, slowly allowing me to breathe better.
        THAT? THAT was ‘psychological torture’!!
        I researched more and found out I’m suppose to have a ‘portable powered air respirator’ 😳
        Why in the world has no one told me this!!(?) 😳
        No one told me about this!! Not even My Neurologist(s)!!(?)
        It gets worse…
        I called the E.R. Friday, explained my situation, the ALS, of what happened and asked where I need to go to get a portable powered air respirator if either they have one or the Walk In Clinic would have one.
        Get this😳 She said NEITHER has one & that I need to contact either my family physician or my Neurologist to get one! 😳
        Granted, I believe God has healed me and also led me to discover the healing power of the Vegan diet but I must admit, I feel abandoned by the Dr’s, as I’m helplessly at the mercy of time, time that I may not have, while waiting to get a portable powered air respirator(?)
        I’m Appalled at this level of what I view as, “gross incompetence”…but…
        1.) Are my feelings justified?
        2.) What ,if anything, can you tell me about ‘portable powered air respirators’?

    • Hello William, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my father, grandfather, both aunts, and a several cousins to ALS. My family has been volunteering for medical research for over a decade, and I believe we are getting closer to finding away to stop the progression of ALS.
      Other members are pALS, caregivers and medical professionals. Please review the ongoing discussions and join in at anytime. You are also welcomed to post discussion topics, ask questions and respond to other members. The more we share, the better we all are in this community.
      Please feel free to contact myself or Dagmar if you need any kind of assistance. Again, welcome to the forum!
      Amanda

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