Announcement

Collapse
No announcement yet.

Hello Everyone

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Hello Everyone

    My name is Kim and I was diagnosed with ALS in 2015. I've been very slow progressing and can still walk and drive a car. I actually have a forum for PALS only since some want privacy and a forum that restricts its participants to PALS and other motor neuron diseases.

    I was a college professor and CPA before my diagnosis. I was also working on a doctorate in naturopathic health and continued to pursue this after my diagnosis. I think it helped me with a supplement regimen and correct my microbiome.

    If anyone would like to join my forum, you must have a diagnosis of some type of neuromuscular disease or are going through the diagnostic process.

    I wish everyone good cheer today.
    Living live on the beach. Dx 2015 ALS (limb onset)

    #2
    Originally posted by KimB View Post
    My forum is located at ...
    🤨 I have to admit to being rather perturbed that you're trying to advertise your forum on another forum - do users advertise other forums on your own forum?

    I'd think people who search online for support groups look at the search results then choose which forum(s) they wish to engage with.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Comment


      #3
      Actually, yes, they do. I've also promoted other forums for CALS and FB groups for CALS only. I also let people put GoFundMe accounts on my forum.

      With this terrible disease, there can't be enough support.

      Living live on the beach. Dx 2015 ALS (limb onset)

      Comment


        #4
        Originally posted by KimB View Post
        I've also promoted other forums for CALS and FB groups for CALS only.
        That is because your forum does not allow carers to become members - it's not the same.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          I want to stress that I have nothing against any ALS MND Support groups, the more the merrier, and it is good to have a PALS only option for those who want it.

          My only issue with your post is you trying to drum up business for your own forum, it's just a bit rude, perhaps it's a cultural difference, perhaps it isn't.

          If I'm on the M&S website, I would never ever see a "why not try shopping in Next" comment. As you're based in the US, I guess the webstores could be Macy's and Nordstrom...
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Ellie I get what you mean😀😀😀😀 I had to look up “PALS and CALS meaning the patient with MND and Carers of those with MND so sounds American. Xx

            Comment


              #7
              Piglet yep me too had to resort to Google!! X
              Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

              Comment


                #8
                Originally posted by Ellie View Post
                I want to stress that I have nothing against any ALS MND Support groups, the more the merrier, and it is good to have a PALS only option for those who want it.

                My only issue with your post is you trying to drum up business for your own forum, it's just a bit rude, perhaps it's a cultural difference, perhaps it isn't.

                If I'm on the M&S website, I would never ever see a "why not try shopping in Next" comment. As you're based in the US, I guess the webstores could be Macy's and Nordstrom...
                I don't need business on my forum. I pay for it out of my own pocket. I've put a lot of effort into it. If you're a moderator, feel free to remove the link. I don't have advertising on it and only have it to support others. I'm sorry if I offended you. I'm here to help support others with my doctorate in naturopathic health. I thought some people might be interested in or have questions about nutrition and supplementation.
                Living live on the beach. Dx 2015 ALS (limb onset)

                Comment

                Working...
                X