Living with SMA can bring many unexpected challenges, from health concerns to equipment problems and insurance issues. It’s good to have a space where people can share their experiences, talk openly, and find support from others who understand. Looking forward to following the discussions over the next two weeks.

Forget ghosts, goblins, and all those creepy crawlers in the night. Living with SMA comes with its own kind of scary, right? 😅 From unexpected health issues to broken equipment and never-ending insurance battles, we’ve got our own real-life frights.

That said, I thought we could have some honest, and most importantly, fun conversations about…

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Hey guys! I have been dealing with severe constipation issues for a while now, but it’s only getting worse and worse. We’re not sure what originally caused it, but it has gotten worse due to my all-fluid diet, my lack of mobility (I’m completely bedbound), the lack of muscles to push out any poop I have cuz of the progression of my disease,…

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Can we take a moment to reflect on the strides made in SMA treatments?

It’s incredible to think about how the SMA landscape has changed significantly over the years, especially when some of us grew up with very different expectations about treatment and life expectancy than people diagnosed more recently. The best part, though? I honestly…

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Thank you. I’ll have to look into that cuz we actually can’t afford it.

Virtual reality equipment is finally as light as a pair of sunglasses! Meta recently announced their VR Glasses, and they seem surprisingly accessible. I’m keen

I do worry that the sensors won’t catch on to movements by disabled users, but you can also control the interface with your eyes and a controller, which might mitigate that issue.

I,…

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I hear you. 😕

I’ve hired all my friends before, and it worked out well. I go through a state-run, self-directed program, and it’s funded through Medicaid. The state approves a monthly allowance based on a yearly assessment of the severity of my needs, and I hire my own caregivers and approve their hours. Then the company handles application processing and…

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I don’t know. My brother doesn’t like the option at all so I haven’t really looked into it much more. But I am considering talking to him about paying for a private aide out of pocket so that we can get someone that we already trust. My friend Emily says she would gladly do it and it would actually help her out. But I’ve never done anything…

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lol Exactly. What’s worse is that a lot of the people that will never truly see us or care about us are the people that decide how we live each day – the president, senators, judges, cops, etc. It actually kinda scares me

I hear you. Not to be a Debbie Downer, but I think some people will always refuse to accept us and engage with us, no matter how hard we try to advocate. That said, I do believe some people are listening and learning. 💛

But also, what the heck?!

Hey, Crystal. Does care.com offer a free trial? As Kevin said, they do have adult care on their website; I believe you just have to filter it out. I tried it once a few years back, but I don’t remember how it worked. For one reason or another, I ended up not hiring through them. My memory doesn’t serve me well these days. 😅

Thank you. We don’t really have the budget right now. If we did, we would probably just hire one of my friends cuz most of my friends are aids that keep getting screwed over by nursing homes. But I’m currently bedbound and require stretcher transportation and the only company we found that does that doesn’t accept Medicaid so we’ll be paying…

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I definitely prefer hiring on my own over using agencies. Like you said, agencies can often be unreliable, and the pay for their employees is typically low. See what your family’s budget is, and if you could even get a few hours a week through out-of-pocket. I think it does really help. care.com is hit or miss, but it’s worth a shot. It’s…

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So I live with my brother (who is my full-time paid caregiver thanks to Agape and Structured Family Care), his girlfriend, and their baby girl – but they need a break and I need a break from my brother. We’re using a nursing company that was set up for us by someone in the hospital, but we’re looking for a different one. For one thing, we have… Read more

I’m currently at home cuz I’m bedbound, but back when I could still go places with my wheelchair? All the time. And I noticed it every time. I don’t know why I notice it more than other people with disabilities, but you’re right – it is very discouraging and sometimes painful. Especially when the person is someone that you want to see you…

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I’ve been in several group settings recently where strangers have blatantly ignored me but have interacted with my friends. They go out of their way to introduce themselves to my friends, but wouldn’t even make eye contact with me.

I don’t know why this has been bothering me recently, because, to be honest, it’s their loss, not mine. Even…

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Hey @bionityphilp sounds great! Let me know if you have any questions. I’m happy to help. 🙂

Yeah. I go to the beach a lot during the summer, and every now and then the wind blows sand onto my chair. Or I’ll have a ton of sand on me when I’m transferred back into my chair. A handheld vacuum sucks it right up.

Thank you Sherry. I did finally get my meds and I do feel a little better, but my body is still recovering from the withdrawal symptoms. And I’m worried that I felt sick from the symptoms for so long that I might actually be getting sick. But I’m not sure. I am okay though. Thank you for checking on me

…You need to vacuum the wheelchair? We usually wipe it down and call it a day. 😅

I had to stop and restart fentanyl a bunch of times in 2024. Withdrawal is potentially dangerous for us depending on the severity and level of care we have, so I hope you’re doing well enough.

That’s valid. Probably wise. I’m just an impatient patient 😂

But I do wonder how it’s going to jive if you’ve had other infusions, like the one for osteoporosis. That particular treatment can, in very rare cases, result in jawbone necrosis. Both prevent the breakdown of different structures in the body.

Thanks for sharing this, Alyssa. I had not noticed the private group before, so it is helpful to know it is available for members who would prefer a more private space to connect and share. I’ll take a look when I get a chance.

For my BiPAP mask, mild soap and water usually do the trick.

For my wheelchair… Welllll, it doesn’t get cleaned as often as it should. But a vacuum nozzle or handheld vacuum helps get all the nooks and crannies. Also, with some wheelchairs, you can remove the fabric over the seat cushion, which is washable.

Did anyone read this recent guest column for SMA News Today? It actually answered some mysterious health issues I had a few years ago.

Joanna wrote about how she was experiencing bouts of tachycardia and trouble breathing whenever she sat up in her wheelchair or tried to do any type of physical activity. After some trial and error,…

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1. Right to work, pursue our dreams without loosening benefits need to live

2. Right to attendant care to get up and rest when we want to get up or so go to rest. To dress as we desire to dress.

3. The right to marry without loosing what we need to live

4. The right to date , be sexual beings without additional judgment

5. To exist without…

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Y’all, I’m keeping track of how often and when and where my caregivers clean for the first time, and realising… I don’t know squat about cleaning. 😂

The general stuff, I’m learning from my mum and caregivers themselves. But if you have any advice on general cleaning and cleaning medical/accessibility aids like BiPAPs, please let me know, por…

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3 is a biggie here in Singapore, too.

I can certainly understand your reasoning. I think also that results will vary depending on each individual person. As with any medication, everybody always seems to experience different results as we all have with Evrysfi & Spinraza. I’m definitely hopeful and excited and also anxious and impatient lol. Waiting for the doctor to finish… Read more

I’m cautiously optimistic. I want to give it a year to see if any dangerous side effects surface. Also, I want to know more about the average results. How much do muscles actually strengthen? What does that look like in real life?

I’ve heard of people having trouble getting their formula when it’s on back order. Since Glucerna is giving you digestive problems, I’d ask your doctor if there are other formulas you could try. They may also be able to help you check whether Pulmocare can be covered by Ohio Medicaid and which suppliers can provide it.

Lol I love your first and last one Alyssa. I don’t feel good right now so I don’t have the energy to think of more but I’ll add one at least:

1). The right to get our meds on time so we don’t have to experience withdrawal symptoms from involuntarily stopping one of your narcotics cold turkey.

Ohh I like this game! Let’s see…

1. The right to make jokes about our disabilities and make nondisabled people feel uncomfortable about it (probably my favorite pastime)

2. The right to receive the same treatment as others

3. The right to get married and work without losing our benefits (a biggie in the USA)

4. The right to not want to be an…

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My contribution:

1 – the right to forget medical appointments

(this happened to me recently 😂);

2 – the right to laugh at adulting attempts gone wrong;

3 – the right not to exercise for a day

4 – the right to want more out of life

A few weeks back, I had a fun opportunity to collaborate on a “Gaming Bill of Rights” with other contributors at independent gaming publication Mothership. It was based on the “Reader’s Rights” manifesto by French author Daniel Pennac.

Here are a few examples Pennac listed in one of his books:

1 – the right not to read;
2 – the right to skip pages;

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Absolutely I will! And I’m hoping more people will start posting here as well. I’ve already filled out the enrollment form and now just waiting for my doctor to fill out his portion and have it sent to the Isembyld team to get the ball rolling with running the insurance and everything. Keep me in your thoughts and prayers

I’ve already emailed my primary neuro about when it might be up for approval in Singapore. Definitely looking to be enrolled ASAP. Tell us how your journey goes?

The Devil Wears Prada is a case of the film adaptation being better than the book, I think. But it also comes down to preference? The two mediums are so different. The way we interact with them is different. It’d be pretty boring if I had to sit through hours of monologue 😅

Ooooh. I’ve been meaning to read everything you’ve mentioned. Any highlights?

I wouldn’t say I’m frustrated so much as… Relieved yet wishing we had the technology and knowledge back then as well. We still have so far to go. For example, I find my body feeling much stronger post-period, almost like Evrysdi is reacting to the shift in hormones during cell renewal. I need the explanation for that 😂

Oh! How did you get daily access to a pool?

That’s interesting. The empathetic argument here may be a forgone conclusion for where I live. “In an ideal world…” as people always say. Then costs and resources are brought up. Sigh. It’s like people listen but they don’t.

For the longest time, “being treated like everyone else,” to me, equated to “people ignoring that my SMA exists.” But a friend recently showed me that “treating me like everyone else” could also mean “taking care of my needs the best he can, as he would for everyone and anyone else.” By extension, that could mean different SMA patients…

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Hey everyone! This is very exciting and I’m curious has anyone on here begun the enrollment process? I have been given the green light from my doctor to get the ball rolling on this and I just started the enrollment form. I hope everything goes smoothly and I’m curious to hear who else has begun the process. Any helpful advice or information… Read more

I’m sure you’ve already seen the news on our main website, but in case you missed it, Scholar Rock received FDA approval for the first-ever muscle-targeted therapy for SMA! This is such a great milestone for the SMA community, and it’s only the beginning.

Isembyld (apitegromab) is a monthly infusion that is intended to block myostatin, a…

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That’s such great advice, Susana. I’m always encouraging my mom to take some time for herself. She is always prioritizing those around her and forgets to prioritize her own needs.

Though I cannot speak for caregivers, I can see how difficult that must be at times. Sometimes a little encouragement goes a long way.

Nice! I didn’t realize Project Hail Mary was a book. I thought it was just a movie.

I just read a really good book called Mob Queen. It’s based on the LA, Chicago, and New York mobs in the 1930s. Though the main storyline was fictional, the characters were real. It follows Virginia Hill, Bugsy Siegel, and Joey Epstein. I honestly didn’t know…

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Recently read Circe by Madeline Miller, I like mythology so that was fun.

Currently reading Project Hail Mary by Andy Weir. He’s the same author who wrote The Martian.

Unfortunately, caregivers are profoundly aware that the work never ends. There will always be something we need help with, in one form or another.

I think the answer is going to be different for each person, because what nourishes us personally can vary so much.

My partner loves motorcycles, so I encourage her to go riding with her friends.…

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