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This topic has 7 replies, 3 voices, and was last updated 10 months, 1 week ago by Alyssa Silva.

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    • #23873
      Slava
      Participant

      Hi everyone! I’m Slava from Russia. I’m 42 years old and I have SMA type 2. In my country there is no proper SMA treatment and isn’t known much about that. My mind is clear but my body is a mess. I need a 24/7 care and there is no one here for me except my poor old mom who is an invalid herself. I’m looking for a life changer. Something that could help me with my health problem.

      Considering all above, could someone please guide me on which steps I should take? I hear Spinraza is a good choice as a treatment for adults. Or should I wait for Zolgensma to improve? What else should I take?
      Maybe I should I look up for a good clinic. Is there any good out there?

      Any advice is welcome. Thank you!

    • #23874
      DeAnn R
      Keymaster

      Hello Slava. It’s difficult to give advice not knowing your healthcare system, but I can let you know what’s available here in the US and give you some tips so you can live your best life. So far Spinraza is the only treatment for adults. Risdiplam is pending FDA approval and works similar to Spinraza however is an oral medicine taken daily verses an injection into your spine. Zolgensma is not available for adults at this time. None of the choices are cure alls for adults. Halting progression in the main objective. A medication you could ask your doctor about now that may give an energy boost is liquid albuterol. Some find it helpful.

      In my opinion respiratory care is very important. A Pulmonologist specializes in this, but many are unfamiliar with our disease. Three tools can help maintain function that I know of. A cough assist machine, a BiPap (not CPap) and an airway clearance shaker vest. I also find a nebulizer helpful when I’m sick.

      My best advice is to continue doing what you can do and try not to focus on what you can’t. It’s important to have support, so try to reach out so you and your mom have the assistance you need. Other family, neighbors and friends are great. Do you have any organizations that can help with caregiving? Hugs! Best of luck to you. I’m sure more will chime in too.

    • #23878
      Slava
      Participant

      Thank you so much for such a quick reply! I really appreciate it and will consider everything you’ve said!

    • #23879
      Alyssa Silva
      Keymaster

      Hi Slava! DeAnn gave you some great input that will certainly help you with your needs. We also have some resources on our website if you have not seen it already. Here is the link for you to check out. Best of luck! Please don’t ever hesitate to ask us questions. That’s what we’re here for. 😊

    • #23931
      Slava
      Participant

      Thanks Alyssa! You are very kind. Yes, DeAnn has been very informative and I can’t be thankful enough for spending her time to reply to wail. I do feel a little shy because it isn’t in my nature to bother about my health. But since my mom is now getting old and weak, I’m forced to look for better ways for both of us. She has a severe a hip joint arthrosis (coxarthrosis) and can barely walk. She also has all her joints aching terribly.

      Unfortunately, my region does not provide caregivers for such people like myself. They can only go grocery shopping and help a bit around the house. Who I need is someone near me 24/7 because I’m unable to even scratch my nose when it’s itchy. Sorry for the details. Normally, I don’t share this part of my life. But I’m glad for the opportunity to reach out. This Internet thing can really be a good help with no boundaries. I hope I work something out. 🙂

    • #23933
      Slava
      Participant

      Hi again,

      I have a bad scoliosis as well. I can only sit down if something holds me up from a back and right side. I hear that surgery can only be the way to straighten the spine but I’m not sure it can be done at my age of 42.

      Has anyone encountered this problem at my or approximately my age?

    • #23948
      DeAnn R
      Keymaster

      Slava, I had rods put in my back to straighten my scoliosis when I was 11.  Called spinal fusion.  In my opinion it would be too risky at our age now.  I know of others who have not had surgery, but not sure what they use for support or pain management.  A brace might help, but can be difficult to get used to.

    • #23951
      Alyssa Silva
      Keymaster

      Hi Slava. I have bad scoliosis and did not have the surgery. Instead, I wear a back brace for support. I am unable to sit up without one. Because I am 29 years old, surgery would not be a good option for me at this point. My body is too weak.

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