Anyone who’s worn a brace knows the drill. Fingers crossed the adjustment goes super smoothly! Looks like I’m about to hop on the same rollercoaster, so I’d love to hear how your ride goes.

I use the ROHO air cushion. It works better if you want to focus on a specific pressure point, but if you’re looking for a generally comfortable seat, a jell cushion might be a better option for you.

I have issues like that all the time. Recently, I took my spinal brace in to have the internal foam lining and straps replaced, as they were…

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Thanks Pidgie, that’s very encouraging to hear. Do you mind sharing more? For instance, where you awake when they passed the tube? Can the anatomy of the throat be an issue? Any other concerns or questions I should discuss with my doctor?

As it turns out, none of their local distributors in Greece provide the opportunity to try the product before purchase, and they’re both too expensive to risk buying without knowing if I’ll be able to use them. So, I’ve decided to buy the Jaw Grading Bite Blocks (Red) – TalkTools instead. My speech therapist used to stick them between my back…

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We do mostly arms, legs, neck and breathing. The neck is my favorite because I can do it without much help and I don’t feel entirely useless haha. As for stretches, it’s basically every single joint.

Speech-to-text is my new bff too, especially when I’m too tired to use my hand!

Impressive!! I don’t think I could do it for five minutes. I do seven stretches, seven seconds each, seven times a day and it’s already too much for me! Do you apply pressure with your hands or any special tools, or do you just keep your mouth wide open?

I can barely move anymore, so I can only work on my breathing and speech on my own. I do PT twice a week though. My former therapist, whom I’ve known for 22 years, knew my body better than I did, and did the most effective (and painful) stretches. My current therapist is afraid to touch me as he is concerned about brittle bones. I can’t say I…

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Hey everyone! I saw my neurologist the other day and she recommended a jaw stretching device (e.g. OraStretch or TheraBite) because the smaller the mouth opening is, the more difficult it will be to intubate in case I need surgery in the future.

The problem is that I have a significant overbite—my upper front teeth extend well over the lower…

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Even if we can’t raise them from the dead, I hope we can at least keep the ones that haven’t died yet alive. Anything that can help with that is definitely worth a shot. Thanks for all the info!

That’s really frustrating! On what grounds did they deny it? Do you pay them an annual fee? My agency gets paid every time I hire someone through them, and if a PCA they send me leaves within 6 months, they send me another one at no extra cost. This way they take a keen interest in finding me reliable candidates (to the extent that they…

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In this case we’ll do it to improve my swallow, but they can be used for any muscle that has atrophied due to immobility. NMES is applied using electrodes to send electric impulses to the muscles and facilitate contraction. NT is basically sticking tapes that stretch and expand. Not sure what effect that could have, otter than create more…

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In my understanding, VitalStim is a brand of NMES. Did you get to choose, or does it depend on what the therapist uses? Do you remember if it was twice a week for you as well?

I’m sorry it ended up that way, I’ll be sure not to let her feed me any hard stuff! Do you mind sharing how many sessions per week you had? The therapist suggested two, but I don’t think I can fit more than one into my schedule, nor can I afford it.

I did a bit of Speech Therapy as a kid, mostly exercises that I still do on my own (when I remember it!). It didn’t help much, and I’ve always thought of it as a waste of time, energy and money when it comes to progressive diseases. Now that new treatments are supposed to be a game changer though, I thought it might be worth another shot. My…

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I’m not sure if I should be posting on this one, since staffing is quite different where I live, but the only thing that has made this nightmare a little less insufferable for me was establishing a long-term professional relationship with a reliable agency. They know my needs better than I do by now and they send me the right person most of the…

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Certainly. It seems like the pandemic brought more restrictions to my life, as if the old ones weren’t enough. Sometimes I feel inclined to just go back to living my life the way I used to and whatever happens, happens…

Yes, wearing a mask seems like my only option since they’ll probably be sick when they come. The alternative is not to see them at all and it’s just so sad because I only get to see them twice a year for a few days. It’s not that we can reschedule and wait for them to recover.

It is Thanksgiving though, so I’ll stop whining and count my…

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At the ripe old age of 37, I’ve already made a list of tested accessible destinations, so this isn’t a problem anymore. Fatigue forms such an integral part of my routine that it’s not a cause of stress either. I know I’ll get tired, then rested, then tired again and so on. In general, anything that can be solved with meticulous planning…

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I get sinus infections too, but they usually come after a cold. I think it’s because I spend much time lying down and the mucus doesn’t drain properly – if that makes sense. I’ve noticed, however, that as long as I keep the airway clear with nasal rinses and sprays for the first 3-5 days, the recovery is much quicker.

I keep wondering if…

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Tough balance indeed, but I think we’re managing. When they poke their nose too much, I do the adult thing and lie, so we’re all happy haha!

Distance takes its toll on all relationships. I’ve visited her a few times, but traveling by plane is very tiring and stressful for me. She’s the one who usually comes back home for holidays, but now that…

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Great topic! Like you, I have an older sister who doesn’t have SMA. We used to be very close, but she moved to another country for studies years ago, settled there and had a family of her own. We’ll always be family, obviously, but there was no way our relationship wouldn’t be affected by distance to some extent. She, too, assumed the…

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Wish I had a remedy for anxiety, I’d be a zillionaire! Just to add to what’s already been said, try to give your positive thoughts too the importance they merit. For instance, I think I read in your column that you got a mild cold recently. I know it doesn’t mean much, but doesn’t it feel a little reassuring knowing that your body can still…

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This is the burning question of my entire life (regarding any virus) and I doubt it will ever change. I just miss the pre-pandemic version of me when every day was a calculated risk and I was ok with it.

Their personality I guess. Some people are just more laid-back about everything while others are too scared to deal with unpleasant situations they don’t understand and they can’t handle (not that anyone asked them to), so it’s easier for them to look the other way. That’s why I choose the audience. I’m always willing to share, but not… Read more

I’ve noticed that some people are surprisingly cool about this stuff while others just feel awkward even when I don’t. Most of the time I avoid sharing too much though. People tend to think that we live our lives in misery, constantly ruminating on our innumerable health issues and challenges. I used to believe that if they knew more about my… Read more

My GP says that COVID is a lot milder now than it was 3 years ago and that, if I think I can be reasonably cautious and avoid exposure, I could wait until autumn. I haven’t discussed it with my pulmonologist yet, but I know he’s generally very strict about being up to date on all types of vaccines, so I expect a different advice…

I don’t feel comfortable without a mask indoors either, so indoor dining is still out of the question. The only change in my routine is that I occasionally have people over without a mask provided that they feel healthy. I wonder if I should get another booster before autumn, but I’m not sure it’s worth it now that summer is approaching.… Read more

I can’t talk about gains as I’m only starting the treatment now, but no one recommended modifying my exercise regimen in any way. I’m getting PT twice a week in 45 min sessions. I thought it wasn’t worth my time and money (insurance covers only 80 sessions per year) until the pandemic hit and had to stop. The impact it had on my body made me… Read more

That would work for me because my meals are usually small and frequent. Thanks again!!

So you take it after breakfast. They tell you to take it after a meal, but I’m not sure how big the meal should be. I mean does my morning yogurt even qualify as a meal? It’s trial and error I guess. I love oats though, so I’ll definitely try that! And yes, it’s better to be on it anyway and hope for the best. You never know how you’d be without it.

Thanks a lot Tammy! It certainly is comforting to be reminded that every case is different. I hope the treatment is working for you!

If it’s become part of your routine and doesn’t cause any other issues, it’s fine I guess. That’s what medications are for!

Thank you so much for your long supportive post Susana!

I also have chronic constipation so, whenever something is wrong, food finds an easier way out through the mouth! It’s interesting that taking it on an empty stomach works better for you because it is advised to take it after a meal and preferably early in the day. My main meal is lunch,… Read more

Thanks Alyssa! Yes, all I had to do was resubmit my application along with two X-rays of my spine proving I can’t receive Spinraza. In my case, it took about a month to hear back. I haven’t heard of any rejections so far and I don’t think I will because the cost is covered by public healthcare which means that private insurance approval is not… Read more

Thank you for the honesty… I think! 🙂 Seriously it’s comforting to know that at least it can be managed. Have you tried to reduce the dose or frequency of Imodium in case your body has adapted and you don’t need it as much anymore?

I don’t know when I’ll be starting yet, I was told to wait for further details. Will keep you posted!

I was finally approved for Evrysdi! The stupid age limit that had been imposed for the past year in Greece, preventing access to treatment for patients over 25, is finally removed. Of course it’s great news and I’m grateful, but my anxiety is running rampant! I don’t know how my body will react to it as I’ve never taken any form of medication… Read more

Sure! I never miss a chance to impart my profound wisdom! Seriously though, if you have information or advice that you think can be helpful, why not offer it? Unless of course the person receiving the advice is in denial, in which case it’s best to back up. Insisting will only make things worse.

Cool reading list! Based on your interests, I think you would enjoy “The Neapolitan Novels” by Elena Ferrante and almost anything by Zadie Smith. Also, since you like Psychology, I recommend “Stumbling on Happiness” by Daniel Gilbert and “Mindset” by Carol Dweck.

As for COVID, I feel that the damage it caused is, to some extent,… Read more

Yes, I never stopped getting PT until three years ago when Covid turned my life upside down. Now I need to find a new therapist because my current one will retire soon, and due to this traumatizing experience, I’m still dreading the adjustment period.

I’m not having major problems. My breathing is not as affected as you would expect. I just… Read more

Mostly reading and watching movies and TV shows. The problem is that none of these seem to work when I’m down. I’ve found that socializing helps me more than anything, but I too try to lay low during cold and flu season. I think the secret is to find happiness in the little things that usually go unnoticed. I used to be better at it.

So, bean bags on the knees is a thing? I thought it was just one of my physiotherapist’s perverse inventions! PT was excruciating when I was a child. It wasn’t just the pain during the sessions -that I could handle- but even the mildest injury would take weeks to heal. My therapist was telling me to be patient for my own good, my parents were… Read more

I’m sorry you are dealing with this, I know how annoying it is. In my case it all has to do with my sleeping position. Essentially, drool goes down the wrong pipe and a coughing fit wakes me up in the middle of the night. I tried different positions and found that it happens mostly when I lie on my side and my head is tilted too far backwards. I… Read more

This is absurd! Maintenance is vital too. Where I live public health care covers up to 8 sessions per month for 6 months per year and still I find it preposterous that I have to pay for the rest. My parents used to stretch me too when I was little and they did a much better job than many therapists I’ve met.

I kind of “demanded” that he wore a mask. I don’t know what general practice is, but I doubt his other patients are equally obsessive and high maintenance haha!

If you don’t mind me asking, is it because of Covid that you don’t receive PT or you don’t find it helpful in general? I hate PT more than anything, but I’ve always thought of it as a… Read more

Do you mean that you take the test lying on a bed without the brace? That would be ideal, but I suggested it once and they rolled their eyes! Glad to hear there are doctors who approve it.

Thank you all for your replies!! I would certainly be firmer if I was sure that my way is the right one, but there’s no way to confirm unless we try. I have repeatedly suggested that we try both ways and compare the results. Honestly, I don’t know if they object from a scientific standpoint or if they just can’t be bothered. And since it’s… Read more

Hey everyone. I have a question mostly for those of you wearing a spinal brace.

During my lung function testing, I am usually asked to take off the brace (except for a few times in the past when they let me leave it on). The problem with this method is that I am unable to sit independently, so what I do is have my caregiver hold me stable for… Read more

I hate to be touched because I get injured very easily, but I’ve noticed that massaging the area helps a lot before stretches! Definitely worth a try!

I’m probably a little off-topic, but do you guys wear a mask during PT sessions? I feel that physical exertion makes the mask intolerable!

For me, it all comes down to effort vs reward. I know lots of disabled folks who refuse, on principle, to go to inaccessible places, but I figured that would reduce my options significantly.

However, I usually try to find a polite way to point out the lack of accessibility. The other day, for instance, I was at a restaurant with outdoor… Read more

Yeah, makes sense. It’s just that I’ve always thought that building a strong immune system takes more than a few days and that these supplements have a more long-term effect. But I guess better late than never.

Anyway, I’m still fine so it seems that it was one more close call! The problem now is that the temporary caregiver I asked to help… Read more