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Preferable treatment
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!
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8 Replies
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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.
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Thank you so much for such a quick reply! I really appreciate it and will consider everything you’ve said!
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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. ????
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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. 🙂
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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?
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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.
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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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The truth is that unless you have money and/or many friends, sooner or later you life will become very miserable. At least for countries not providing some kind of more full time caregivers etc.
Luckily, earning money remotely is quite feasible nowadays, especially in IT, programming etc. There are many courses and other learning materials for such professions, and there are companies that offer working remotely, especially since covid.
One way to make it easier for your mom, is hiring someone to help with the most difficult tasks like bathroom/toilet/transferring from/to bed, etc. It should not be expensive if the person lives near you. Try asking the neighbors about that, putting the ads near your house. That’s what Valery Spiridonov was doing when he lived in Russia.
Also there are some devices that can help with the transfers. Floor/ceiling lifts (подъемник), portable toilets with wheels (туалетный стул). The floor lifts cost from around 2k EUR, maybe try crowdfunding if the government does not compensate it.
And yeah, both of the currently available treatments for adults are not really life changing. You may get some improvements (e.g. breathing, speech, lifting arms a bit higher), but you will still need the same 24/7 care. But the disease progression should stop at least.
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