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Starting The Long Journey

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    Starting The Long Journey

    My name is Howard and I live in the US. My diagnosis with a rare form of MND called Progressive Muscular Atrophy (PMA) was finally revealed to me on October 10, 2018, after 15 months of evaluations. Right now I'm finding information about PMA to be very elusive and many times, just plain inaccurate. My best description of PMA is that it appears to mimic ALS but only from the waist down. Only my legs are involved and over the past 15 months they have become so weak I now require a cane to walk without falling down. My hope is this forum will help me connect to others with the same or similar disease, and share ideas on the best ways to slow the relentless progress of something we know will eventually lead to complete immobility.

    On a positive note, my mental state right now is very positive and hopeful. I have accepted my diagnosis and will move forward doing whatever it takes to tackle this head on. I look forward to hearing from others with MND and will share anything that will make our journey a battle to maintain the best possible quality of life possible under the circumstances.
    Thank you for being here and for all this group does!

    #2
    Welcome Howard.

    A positive attitude is a great attribute to have.

    Only lower motor neurons are involved in PMA, which usually starts in the arms or legs - unfortunately it does tend to spread, as I'm sure your Neurologist explained to you what PMA involves.

    Here's the MNDA's fact sheet on PMA which you may find useful: https://www.mndassociation.org/wp-co...ar-atrophy.pdf

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi HW and welcome to the forum family.

      Connecting to others with your condition is difficult as you have pointed out but I am a member of a PLS/PMA group who hold a closed Facebook webinar every Thursday at 8pm UK time for 1 hour. Depending on where you are in the US that should be around lunchtime.

      We also publish a quarterly newsletter and if you want to send a private message with your email address I can send you a copy and request you join our group. We have other European members but I not aware of any in the US.

      Many of the symptoms you will experience are shared with members of this forum so I’m sure you will get advice from others.

      Best wishes,
      Barry
      I’m going to do this even if it kills me!

      Comment


        #4
        Thanks Ellie! That's exactly what I've been looking for. I really appreciate your taking the time to clue me in!

        Comment


          #5
          Hi Howard and welcome to the forum;

          I'm sure that we can help you with things and visa-versa. Not falling is very important for many of us but if you can protect yourself it's not quite so bad.

          Best wishes, Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

          Comment


            #6
            Welcome Howard. You will find lots of help and support on here. I joined in July after my Husband was diagnosed

            Comment


              #7
              Hi Howard. It's great that you found this site. Take care, Lynne
              Last edited by Lynne K; 6 November 2018, 21:28.
              ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
              I'm staying positive and taking each day as it comes.

              Comment


                #8
                Sounds great Barry. Still working my way around this site. So far it seems I don't have the OK yet to send emails to other forum members. Once I solve that mystery, I'll take you up on your offer to join your group on Thursdays! Stay tuned! :-)

                Comment


                  #9
                  HW,

                  I believe after 5 posts you can send a pm.

                  Barry
                  I’m going to do this even if it kills me!

                  Comment


                    #10
                    Barry:
                    Is the PLS/PMA group still active? I was away over the holidays and got behind in my email. I'm still interested in participating in that group.
                    Thanks,
                    Howard Rhoades

                    Comment


                      #11
                      Hello Howard,

                      I have resent my email to the group administrator and she will contact you again. A point she mentioned was to check your spam email if you can’t find it in your inbox.

                      Best wishes,
                      Barry
                      I’m going to do this even if it kills me!

                      Comment


                        #12
                        Thanks Barry. Will do. Appreciate your help.
                        Regards,
                        Howard

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