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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic contains 8 replies, has 5 voices, and was last updated by  Alyssa Silva 1 week ago.

    • Author
      Posts
    • #21162
       Alyssa Silva 
      Keymaster

      Hey there, the name’s Alyssa! Just wanted to briefly introduce myself as your new forums moderator. For the past 2.5 years, I’ve been the voice behind Life, One Cup at a Time— a column right here on SMA News Today— and now I’m super pumped to get more involved and hang out with you in these forums.

      A couple of things you should know about me:

      • I’m 29 years old and have SMA type I
      • I was the first adult to receive Spinraza in December of 2016
      • I’m a coffee enthusiast

      Feel free to introduce yourselves here, so I can get to know you better. Happy Friday!

    • #21177
       DeAnn R 
      Keymaster

      Welcome!  I look forward to working with you.

      • #21184
         Alyssa Silva 
        Keymaster

        Likewise! Happy to be here.

    • #21182
       Kelly Miller 
      Participant

      Hey there Alyssa! Glad to meet the person behind that column. I’ve enjoyed your writing very much and I’m sure you’ll have some great nuggets of wisdom to share with us. It’s always weird to tell people about yourself on a forum like this because it seems so egocentric. I guess I’ll say the usual 1st: I have SMA type II. I was diagnosed originally with type I when I was 5, but since I made it way beyond the usual timeframe they expected in 1968, they decided it must not be that type. The fact that you have type I and have gotten to be 29 is amazing, and it speaks to how well you must take care of yourself. I currently live in St. Augustine FL, having moved here in June from Houston, Texas to be right near the beach. Of course, we have beaches just south of Houston, but they pale in comparison (by far) to anything Florida can dish out. It’s just me & my husband of 22 yrs. and our dog Rex, so we were able to pick up and move to our dream spot without a problem. We’re very happy here, altho getting all my doctors lined up over here has been tricky. I had to fight with my new pain mgmt. doctor because things are done way differently here, much more strict. I had to teach him that he wasn’t just going to drop me from my pain meds because he thought it should be so. I had to set him straight about SMA right away & the pain that can be associated with it when you’ve reached the ripe old age of 56. He came around after a couple of times of me telling him he might want to study up on SMA. So far the others have been okay, but I have a new pulmonologist & neurologist (both were appts set way in the future) coming up soon enough, so we’ll see. I’m retired from the Social Security Administration where I was a disability claims rep for SSI benefits, and I work part-time now from home for a Canadian company that helps other companies (of all sorts) make their presence on the Internet accessible to people who use different technologies to navigate it. Most of my co-workers, including the founders, are visually impaired in some way, so I get to be the expert on speech recognition. It’s fun getting to look at all sorts of websites and give my opinion on what they need to make better for people who use voice dictation. I am also involved in developing training materials for new employees at our company and information that goes out to her customers. I set my own hours which means I am on here in spurts, sometimes several days in a row and then not for a week or so.

      I guess that’s enough. Once I started writing, I realized I really did have a lot to say. I’m hoping DeAnn already knew you or else I look pretty silly for writing so much, lol. Again, I look forward to “chatting” with you & congratulations on your new position.

      • #21183
         Alyssa Silva 
        Keymaster

        Hey Kelly! Nothing silly about that introduction— I started this thread to get to know you better, so I really enjoyed reading it. Switching doctors must be such a headache (as personal experience has shown), but fortunately, you have some beautiful beaches nearby to de-stress. I have some friends in St. Augustine— it looks beautiful there!! Thanks for reaching out and reading the column. 🙂

    • #21187
       Kevin Schaefer 
      Keymaster

      Welcome aboard! Excited to have you here, and to get your input on a wide range of subjects.

      Have a great weekend everyone!

      • #21201
         Alyssa Silva 
        Keymaster

        thanks Kevin! I appreciate the opportunity!

    • #21188
       Halsey Blocher 
      Participant

      Glad you’ve joined the team Alyssa! I’m looking forward to getting to chat with you and get to know you better!

      • #21202
         Alyssa Silva 
        Keymaster

        Yay! Thanks Halsey. 🙂 I’m looking forward to it as well!

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