Living with SMA can sometimes make it challenging to balance managing your health with maintaining a social life. Between managing symptoms, attending medical appointments, dealing with fatigue, and the physical demands of everyday life, finding that balance can look different for everyone.

How do you balance managing your SMA with making…

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You can be someone who needs a lot of help and still be someone who has a whole lot to give.

Did you know November is National Family Caregivers Month? Whether you’re a caregiver or someone who receives care, we want to know:

What’s one thing that you wish people knew about caregiving?

I’ll kick us off in the comments.

Hey everyone, have you ever noticed there is almost no media about SMA? No movies where the character has SMA, no books where the character has SMA, no songs about the struggles of SMA, etc. It’s all about cancer or cerebral palsy or paralysis etc. Well I have started a book where the main character has SMA type 2 and I’m currently in the…

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You and me both! Now just waiting on paperwork to Accredo and nursing home care company to coordinate. The visiting nurse has to have proper training for this medication before she/he does the infusion

I think I have a problem with procrastination… I’ve only had one bath since I’ve been home with my brother and not at the nursing home (and that’s been since May) – and, to be clear, it’s my fault (not Nick’s). I keep avoiding it. Nick keeps saying that I need a bath and asking me when I wanna do it, but I keep putting it off. There have been… Read more

Yes, I am. It’s actually been a roller coaster since the last time I messaged you. The pain in my g/j-tube was so severe that I went to the hospital to get it checked out, but they said everything was fine and sent me home. Not even 4 days later, my g/j-tube was bleeding profusely and my brother rushed me back to the hospital where they…

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Unfortunately, I can’t drive through the sand, but I park my chair right next to it, and the wind still manages to get all sandy.

Definitely excited! My thirties have been way better than my twenties, despite the aches and pains.

I can’t tell if you’re making me dread or feel excited turning 30. 😂

Ooooh… I didn’t know wheelchairs nowadays could go down to the beach. Haven’t tried it yet. Too much of an indoors girl. But I do miss the atmosphere of the beach. 🤔

👏

Congratulations! That was relatively quick! Hope the first infusion goes well and it won’t be too hard to find a vein. 🤞🏻

Oh no. I’m not surprised, after how hard withdrawal wrecks our bodies. Hope you’re on the way to recovery or recovered now. ❤️

Hey y’all! After realizing we have a large gap of information about reproductive health for SMA patients, one of SMA News Today’s brilliant science writers, Marisa Horak, had the idea to ask myself and our coworkers if we’d like to start a project together. The project would be a survey for patients who’ve had to attend to our…

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I was approved! Hopefully I’ll be able to start treatment in another week or 2 after everything gets finalized. I’ll keep you all updated and hope others will too!

I just turned 36 over the weekend. Physically, I feel like I’m 96, but mentally, I still feel 26. Things snap, crackle, and pop on me now. I also just have a hard time getting out of bed and feel stiff/sluggish. That said, I think aging is such a gift when you have SMA. So while I would like my body to work a little better, I’m truly grateful.

Caregiving can be an important part of life with spinal muscular atrophy (SMA), and many of the challenges families navigate extend beyond any one diagnosis.

In honor of National Family Caregivers Month, we’re inviting the SMA community, including family members and caregivers, to join In This Together: Life & Caregiving with ALS, a candid…

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They say cats have nine lives. What about SMA patients?

I was telling a friend the other day that my body has broken down and rebuilt itself so many times that I don’t know how many cycles I have left. If this were a video game, what would my health bar look like? I’m not sure I want to know… Though, on the other hand, it does make me feel…

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Halsey Blocher, our Columns Manager and columnist herself, recently wrote about something I’ve been feeling overwhelmed by: the trouble SMA patients can have feeling our age — not only because people infantilize us, but also because our health issues and other life experiences have us relating to older adults and the elderly.

I’ve actually…

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Living with SMA can involve a lot of planning, appointments, equipment, daily assistance, and decisions about how to use limited energy. Sometimes, managing your health can take up so much space that it’s hard to make room for everything else.

I’ve been struggling with this lately. In part, it’s my own fault. Over the summer, I did my best not…

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Hi Crystal. I’m so sorry you’re dealing with this right now. Constipation can definitely feel extremely uncomfortable. Do you have a GI doctor you can consult?

There are many different medications you can take to help with bowel movements. I take Miralax every day so I don’t get backed up. I used to have a lot of issues going to the…

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Thanks for joining us!

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.