SMA News Forums Forums Welcome Lounge ???? Hello ????

  • ???? Hello ????

    Posted by robin-c on June 5, 2022 at 9:09 pm

    I finally got around to creating an account, lol.
    My name is Robin and I might be the oldest one here, but I definitely don’t act my age (most days). I enjoy reading the forums and watching the videos, etc. I think I’ve even met some of you at virtual events.
    I often learn new things from my fellow SMAers and look forward to participating in discussions here. ????

    robin-c replied 10 months ago 7 Members · 18 Replies
  • 18 Replies
  • deann-r

    Member
    June 6, 2022 at 10:16 am

    Hey Robin!  Nice to have you here.  I remember chatting with you through some of those online get togethers.  We have an awesome community.  Feel free to chime in anytime.  Maybe us old timers can teach the young pups a thing or two.  Or, as you alluded to, learn from them.

    What other hobbies keep you busy?  Sounds like you like to be on the go.

    • robin-c

      Member
      June 7, 2022 at 8:33 am

      Hi DeAnn! It’s great to be here.

      yes, I stay busy, although I retired after a 34 year career in state government, much of it as a middle manager. My main “hobbies” are genealogy research and “making my husband’s life ‘miserable’” – a mutual joke after 40+ years of marriage. I also help manage my 92 year old mother’s care, serve in multiple officer positions with 2 nonprofit organizations, and volunteer with 3 other organizations. Let’s just say I am still trying to find a healthy balance between being busy and overly stressed out. I could be labeled a “slow learner” when it comes to saying “no”. ????

      • deann-r

        Member
        June 16, 2022 at 11:45 am

        If it’s over 40 years misery must love company, lol! Genealogy is always interesting. There used to be a couple good shows based on ancestry too. I think one was called “Who Do You Think You Are?” The other was only on for a season but this gal would use genealogy to solve crimes. I don’t remember the name of it. She was pretty good at piecing together the links.

        Maybe I should have asked, what do you do in your down time to relax? Although you might not have much of that from the sound of it.

      • robin-c

        Member
        June 23, 2022 at 7:50 am

        DeAnn, I have seen your videos so I expect you garden in your downtime. I really can’t seem to keep plants alive, so gardening is not an option. ????

        I guess my down time is either watching HGTV programs or socializing online or on the phone. I daydream about redesigning/remodeling our kitchen, lol. Of course I can’t do the physical work, but I would love to supervise. (My husband refuses to let me supervise him!!) And I’m definitely a “people person” who enjoys helping others.

        FYI, the genetic genealogist’s name is CeCe Moore. ????

  • alyssa-silva

    Member
    June 6, 2022 at 2:12 pm

    Hey Robin! Glad you made an account and can join in on the discussion here. We’re happy to have you. ???? I don’t think I’m an old-timer, but I’m definitely an old soul. Does that count? Looking forward to getting to know you better.

    • robin-c

      Member
      June 7, 2022 at 8:33 am

      Alyssa, thank you for your kind words. Yes, being an old soul definitely counts! It’s nice to meet you here, as I have read your articles and followed you on other media for awhile. ????

  • dennis-turner

    Member
    June 7, 2022 at 5:14 pm

    I am 63, so I don’t know if you are the oldest on the forum.

    Glad to have you onboard!

    • robin-c

      Member
      June 8, 2022 at 10:23 am

      Hi Dennis, I have you “beat” by 3 years. Lol  It’s nice to meet you.

      • dennis-turner

        Member
        June 9, 2022 at 2:19 pm

        And you as well. How and when were you diagnosed?

        I was diagnosed when I was 16 by a muscle biopsy. At that time I was told it was Kugelberg-Weilander disease and that if I exercised it would get worse.

        Needless to say, thank God we have progressed in our understanding and that treatments are now available to at least slow the effects.

      • robin-c

        Member
        June 23, 2022 at 7:33 am

        Hi Dennis,

        I was “lucky” because my brother and I were diagnosed by EMG and symptoms in 1964 (I was age 8), by a very knowledgeable woman doctor (she was a ground breaker). She was my neurologist until I married and left my hometown.

        I agree things have changed for, the good, since then.

    • robin-c

      Member
      July 20, 2023 at 4:11 pm

      Dennis,

      If you are on Facebook, you may be interested in this group I recently set up for Adults With SMA 50 & over

      https://www.facebook.com/groups/1992651431088271/?ref=share_group_link

  • amy-olmscheid

    Member
    June 8, 2022 at 9:24 am

    Welcome, Robin!  Glad to meet you~

    • robin-c

      Member
      June 23, 2022 at 7:41 am

      Amy, thanks. ????

  • diana-a

    Member
    June 16, 2022 at 5:25 pm

    Welcome Robin!  Look forward to meeting you someday. I’m 60 years old.  SMA 3  4 SMN2 copies.  I was diagnosed at a very young age. My older brother also had SMA and had been diagnosed with Duchenne MD.  It was in the early sixties and they did not know about SMA.  They knew to be observant of my walking, etc.  I’m still ambulatory but use a cane, walking sticks, or walker for long distances as of last year when I injured my hip.  So grateful for the therapies that are available now.

     

    • robin-c

      Member
      June 23, 2022 at 7:38 am

      Diana, thanks for the warm welcome. It’s nice to meet other “elder” adults. I feel like SMA and aging needs more research and documentation. I realize that statistically we’re a small group and until the internet we really couldn’t network and share our experiences.

      I have SMA type 3, (3 copies of SMN2) and have been non-ambulatory since my mid-40’s. Some days I really struggle, but I have a supportive husband and family. ????

    • robin-c

      Member
      July 20, 2023 at 4:13 pm

      Hi Diana,

      If you’re on Facebook you might be interested in a private group that I recently created. Adults with SMA age 50 & over.

      https://www.facebook.com/groups/1992651431088271/?ref=share_group_link

  • blake-watson

    Member
    June 21, 2022 at 1:00 am

    Hi Robin! I’m pretty sure we met at one of the virtual hangouts (did they stop doing those?). Welcome to the forums.

    • robin-c

      Member
      June 23, 2022 at 7:40 am

      Blake, thanks!  Yes, I do seem to recall you, lol!  I haven’t seen any notifications for the “hangouts” since late last year I think. I’m glad that I finally decided to join this forum.

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