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    • #18613
      Dagmar Munn
      Keymaster

      Every so often I get an email or a social media post telling me the sender has the “cure” for ALS. Or, they have a cure-all that worked for MS or Parkinson’s and they’re convinced it’ll do the same for ALS. (I wrote about it in this column:
      “Friends Don’t Tell Friends How to Cure Their Disease.”

      I don’t mind helping others learn more about ALS. I’ve been living with it for 11 years now, and I’m happy to share advice on topics such as rollators, mobility scooters, or the best exercise videos for ALS. But, when scammers even well-meaning friends pass along inaccurate or medically dangerous information – – that irritates me. And if possible, I lead them to reputable sources, or just laugh off the encounter.

      Have you experienced friends or strangers offering you inaccurate advice? What do you tell them? What was the strangest “cure” suggested to you? Let’s share a chuckle on the topic as well as learn how best to handle these types of situations.

    • #18615
      Debra Kaufman
      Participant

      Yes, I had an unfortunate incident. When I found out my cousin’s diagnosis of ALS, I was very upset and shocked. I confided in two friends, who immediately started bombarding me with information about a diet that would “cure” ALS because it “cured” MS. I tried to thank them for the information and change the subject to get them to stop, but they simply wouldn’t let it be and tried very hard to convert me to their POV. Not my proudest moment but I got really angry at them for such a clueless, insensitive way to respond to my news. All I wanted to hear was “I’m sorry. That must be hard.” I know that people respond with “cures” as a way of not dealing with the reality or illness and death, but it was very hurtful and not what I needed to hear.

      • #18616
        Dagmar Munn
        Keymaster

        Amen, Debra. I totally agree with you.

    • #18637
      Anonymous
      Inactive

      Most of my friends are AA/NA and are not aware of my condition. They have a lot of problems in their own lives to deal with without me dumping mine on top of them. I have helped folks with substance abuse issues for years. I ended up getting a bachelors degree in psychology to help people with addiction problems in 2019. Finished classes 23 Nov right after my diagnosis on 3 Oct. Strange how life deals the cards sometimes.

      I have not had cures thrown at me yet. I have a small circle of family that is aware, but am not sure how deeply it has sunk in. My wife is the closest person and will be my caretaker, but she still has not really started any type of grieving process so I am not sure how deep reality has hit her. We were married in the Army in 1981, 40 years ago this year.

      Cat Stevens did a song called Father and Son. That is what my kids are like, living their lives and staying busy. Grandkids and soon great grandkids do not need to deal with this. They all take a lot of pictures so I get to see them more or less on a frequent basis. Modern society at its best! Sure wish I could hug them more often though.

    • #18639
      Suzanne Akerman
      Participant

      A not real friend told me about Dr. Gundry’s diet, to help with my ALS.

      I told her I didn’t eat food anymore.

      The not real friend came to visit me a few days later, the first and last time.

      She asked if I was losing weight. I told her my weight was stable.

      She said my color was good. I didn’t ask her what that had to do with ALS. She was a talker.

      She didn’t let me get a word in. She talked about her weight, and her prediabetes.

      • #18646
        Dagmar Munn
        Keymaster

        I hear ya Suzanne 🙂 I have learned to silently chuckle when certain friends share their ongoing challenges to lose 10+ lbs. and the “current diet” they are on. It seems they are tone-deaf to how we pALS struggle to keep weight on!

    • #18705
      Suzanne Akerman
      Participant

      I never managed to put on weight in my life before ALS. I envy my overweight friends. I tell them to keep their weight as you never know what will happen.

    • #18719
      Marianne Opilla
      Participant

      I have a “friend” who tries to phone me frequently.  I got tired of her incessant comparisons of her health with mine, non-stop chatter, and never giving me a chance to speak.  Lots of advice about diet, and what I “should” be doing.  I don’t answer her calls any more.  One person told me I should learn sign language.  (My hands don’t work).  Another friend told me I should get a job.  Another friend invited me to pickle ball and gave me a marimba to play….I could go on and on!  My list of friend contacts has shrunk quite a bit since diagnoses.

      • #18738
        Dagmar Munn
        Keymaster

        Marianne, if only they could walk a mile in your shoes…. then, they’d understand how off-putting their suggestions are.

        (heck, I’d like to “walk” a mile in my own shoes! haha)

    • #18737
      Marianne Opilla
      Participant

      I just got a new piece of advice from a college friend of my husband’s.  He is offering me LSD to treat ALS.  He will “sit” with me and monitor my “trip.”  I wonder what that would do to my already messed up nervous system?

      • #18739
        Dagmar Munn
        Keymaster

        Of course, you’re not going to do it – – but wouldn’t it be sunny to say “sure, and I’ll charge you $5,000 to cover my medical costs!”

    • #18740
      Dagmar Munn
      Keymaster

      Hi all – – maybe we should change this topic to: strange things “friends” have suggested to cure my ALS… and, the snappy-dappy reply I should have said back to them. 🙂

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