According to my dad (mid-50s, non-SMA), consuming food and supplements that promote collagen production supposedly helps. More collagen equals better cartilage, equals less joint pain.

You could look into traditional Chinese medicine (TCM), too. Obviously, discuss with your doctor before you receive any treatment or consume any supplement,…

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Being in the hospital isn’t easy; the conditions that land us in a ward alone are difficult to cope with. But it can be simpler and easier than juggling a million things in our regular lives, giving us a strange nostalgia for our time in the hospital.

I wrote about going through this myself recently, for my column. Don’t worry, I’m talking…

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Hi everyone! We haven’t done a treatment check-in in a while. So I wanted to create a safe space where we can talk about our treatment journeys and what we’re most looking forward to in the future.

Are you currently receiving any treatments? How is that going? Is there a treatment you want to be a part of? How are you feeling about the… Read more

When I opened SMA News Today to submit a draft the other day, a headline caught my eye: Women with SMA can have successful pregnancies with team-based care.

I was stunned. With all of the different health complications SMA and pregnancy can have, it seemed impossible to me to combine the two conditions, until I read the article. Not to mention…

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Learned something new! Thank you for sharing your experience. This is new territory for me, and it is something that I will experience for the first time myself soon. It’s nice to hear from others.

Hi all! Just checking in to see how you are enjoying the forums. 

What topics would you like to see more of? Are there any resources you are hoping to get from this forum? What matters most to you in an online community like this?

Please give us your feedback, or feel free to private message me.

Not silly questions at all. So, I was ambulatory until I was 52. Between no longer load bearing in my legs and hips in combination with my age, my neuro thought it was a good idea to have this done. After taking the Fosamax pills for 3 years or so and then transitioning to the Reclast infusion, my DEXA scan showed an increase in my T…

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100% agree. Sometimes educating folks is a necessary thing.

It’s like the old saying, “If I had. a dollar every time someone parked in a handicapped spot that wasn’t handicapped, I’d be rich.”

But you’re right, I would never want to call someone out if they had an invisible disability because they deserve the spots just as much as we do. I’m definitely cautious and mindful of that.

That time that woman…

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Really glad to hear that the pill has helped you. How come you’re not taking it anymore? Are you only supposed to take it for a certain amount of time? Sorry if these are silly questions.

Getting a bone density scan was never at the top of my long list of things to do and manage with SMA. But now that I’m getting older and having more aches…

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Kind of a follow-up as well from my response a month ago. This was never an issue for me until I became non-ambulatory in 2015. In my annual MDA clinic check up, my neuro suggested an evaluation of this very thing and referred me to an endocrinologist. The endo is the doctor who prescribed the DEXA/bone density scan. They focused on the…

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I think the difficult part about this, even for someone like Vrabel, is the invisible disability part. To me, if they have a permit, I don’t waste too much time on it. There are a couple of reasons for this:
1. In the state of Maryland, even a physical therapist can complete and sign off on the form for these, so a lot of people don’t have to…

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Interesting! I really need to schedule my scan. I’m in between hospitals right now, so it’s just a waiting game.

Anyone with SMA who’s visited a theme park will know the struggle of finding accessible attractions. It’s unfortunate, but though theme parks are technically accessible, in that you can access the grounds, they aren’t inclusive by way of not having many accessible rides. My friends and I experienced this back in Jan, as I detailed in …

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I stand corrected! (so to speak)

Reached out to my doctor and he said there is value in getting a DEXA scan. There are some medications that need serious consideration but there are other options available.

Lesson here is ask every question. More information is better than less.

These days, I think I would win gold for most endurance in problem-solving insurance woes. 😂

In honor of the Olympics, let’s celebrate the elite athleticism it takes to live with SMA. 

If SMA had its own Olympic Games, which event would you compete in? 

Fastest power wheelchair driver?

Master of creative problem-solving?

Best “I packed literally everything I might possibly need” travel bag? 

Be as serious or as… Read more

Valentine’s Day, I think, can be a complicated one to witness even without a disability. All those couples around, all that processed sugar on sale. Throw SMA into the mix, and it can be more of a struggle, as we may be dealing with health issues, social isolation, or being the single friend in the friend group.

This year, though, a friend of…

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I’ve had people ask to borrow my permit for concerts and sports games, which is just crazy talk. I would never allow that. But I do agree that people with invisible illnesses need them too. They should have a permit though to prove that.

Breathe. Inhale, exhale.

Rinse, repeat.

I understand the inclination to freak out over the newest health complication but the question for me has become: can I do it anything about it? Are there any reasonable strategies to alleviate this issue or not?

Like everything else with SMA, it depends entirely on your baseline health. That said, It’s a…

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Currently reading The Bright Sword: A Novel of King Arthur by Lev Grossman who wrote The Magicians that was on Syfy. Tremendously engaging and fun with a fantasy vibe, can’t put it down.

I see this all the time.

It’s frustrating and disheartening.

Used to get very angry about it, to the point of finding a friendly cop (when I could find one) to write up a ticket.

We have the problem of people “borrowing” grandma’s permit to park in the handicapped spots. But we also have people with invisible health issues like heart and…

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Well, would you look at that? We have officially survived a full month of 2026. As such, I think it’s time for a self-care check-in.

How is everyone doing so far? Have you been taking care of yourselves? Manage to spoil yourself in between your responsibilities? Need some encouragement?

One time, a friend and I called someone out on this because I couldn’t get out of my van. Let’s just say the person said some choice words to us that I cannot repeat here. It was an awful situation, and unfortunately, they were not very understanding.

In honor of the Patriots’ going to the Super Bowl this weekend (go Pats!), I have to share this video with all of you. 

Basically, the Patriots coach, Mike Vrabel, shares what drives him most nuts, and his answer is when able-bodied people park in handicapped spots. But what I love most is that he actually calls people out when he sees… Read more

I’m more of a mystery/thriller book reader, so I don’t know how many fantasy books I can recommend to you. However, I did just read “The Midnight Library,” which is considered fantasy. It was pretty good. I enjoyed it, and I believe the author is coming out with a second book along the same idea this year. Something to consider!

For some reason, Singapore’s largest English newspaper — The Straits Times — decided it’d be a good idea to interview me about what I’m reading these days. I’m assuming it’s because people know me primarily as a writer. A little sadly for both of us, the interview made me realize I’m not reading as many books as I want to.

Part of the problem…

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I’m officially old.

Okay, just kidding, but kind of. When you think about it, 35 years old is practically geriatric in the SMA world. 🤪

I’ve reached a stage in my life where things like my joints hurt in rainy or cold weather, my bones snap, crackle, and pop, and I have to text my friends things like, “Is this an SMA thing, or is it… Read more

This is the coldest and snowiest winter we’ve had in years. It’s terrible. I try to go outside for my mental health, but the cold is so harsh on my body that I would rather stay inside. My bones and joints are not a fan. We’re potentially getting a bomb cyclone this weekend on top of 18 inches of snow already on the ground. So, in other…

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The winters in the Pacific Northwest are much milder than they are in Rhode Island. I don’t miss Rhode Island Winters at all. Although it is too cold for me to walk down to the bay or go kite flying, I still get a fair amount of outdoor time in nature. There’s quite a bit of wildlife viewing we can do from the van. I spend about 30 minutes a… Read more

I’ve had several DEXA scans. Maybe 6 or 7 years ago, my neuro referred me to an endocrinologist to assess bone density. The initial DEXA scan showed concerns with my T scores in the hip areas. I was prescribed Fosamax and took that for a few years, with annual DEXA scans. After 3 or 4 years, that seemed to stabilize and in 2024, I switched…

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You will have to give me some productivity tips because all I want to do these next couple of months is lay under a blanket, sleep, and watch TV/read. 😅

This reminds me… I was supposed to do a bone density test over the summer, and I forgot. 😑 Try not to dwell upon it too much. I know the scan is super easy to do, so maybe you could talk to your doctor about getting one prescribed for some peace of mind. I will say, in the past couple of years, I have had more trouble with my knees and…

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So many good ideas here. I never thought about wearing thermal pants as a base layer. I may have to do that. I don’t remember the last time winter in New England was this cold, and I’m struggling to stay warm, even indoors. Due to poor circulation in my lower extremities, I have a hard time regulating my body temperature in my legs and feet.…

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I also hibernate during this time of year, especially with winter storms and colder temperatures. It’s definitely more isolating, and January does feel especially Long. But on the flip side, I do enjoy having more time to watch movies, read, and work on my creative projects. My day job certainly keeps me busy, but since I’m indoors anyway, I…

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Today, on New Medical Anxieties For Sherry: Osteoporosis! All thanks to a study that says nonambulatory SMA children have weaker upper leg bones and my use of anti-inflammatories for chronic pain. Yay! 😅

This is the part where I ask if anyone here has gone through bone density testing and what it was like for you.

How did it come up with…

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I’m not going to lie, I’m definitely feeling the doldrums of winter right now. January is always the month I struggle with the most when it comes to my mental health. That being said, there are a few things that are bringing me joy right now and helping time pass by quicker: 1) It’s playoff season for football, and my beloved Patriots are still…

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Winter can feel especially heavy… short days, long nights, disrupted routines, the mid-January slump. When you’re living with SMA, the seasonal doldrums can hit a little harder, both mentally and emotionally. So I wanted to open up a gentle check-in space here. 

How are you doing? Are there any small snippets of joy getting you through… Read more

I have a lot of difficulty as well wearing most jackets in the winter, but what is more frustrating is having someone put the jacket on me or take it back off again when come indoors. The act of getting a jacket on and off usually throws my seating position off and as it is typically done by someone unused to dressing me, it often results…

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Most of us who are familiar with SMA and general disability advocacy will have known Alice Wong. She was a force to be reckoned with, who lived with SMA until the age of 51 late last year. Both our news team and our Community Editorial Manager on his column, Kevin Schaefer, have written about her impact as an activist and a writer, for those…

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Usually I keep my hands out so I can use my phone, unless the cold is getting to be too much for me.

Admittedly, I have not set any goals for this year yet. I’m more of a “hibernate until spring” kind of gal, then I’ll reemerge from my den feeling renewed.

That said, I am going to try to set timelines for my goals when I’m ready. I’ve always avoided this in fear that SMA would hold me back from achieving them. But I want to teach myself that…

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New year, new goals?

I’ve been thinking a lot about what goal-setting looks like when you have SMA. Some may hit the ground running. Others may prefer a slow and steady pace. Then, of course, there are the inevitable curveballs SMA throws at us that veer us off course. While this doesn’t stop me from achieving my goals, it makes it difficult… Read more

Ohhh ok yes, I understand now. And that makes a lot more sense than the way I was thinking! But I hear you, girl. Screw optics. I wanna be cozy.

You seem to have this down to a science! Like you said, I noticed I get colder more easily even when I’m indoors now. I always wear strapless shirts at home, regardless of the seasons, so I can move my arms freely. Granted I can barely move them to begin with, but having that extra layer of material makes it all the more difficult.

I should…

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Tried laying a blanket over my legs and tucking it on the sides a couple times, but that was not especially helpful. The body heat I was trying to conserve would escape from my calves. Add our slower circulation and… chilly.

Not sure if I explained it properly. We lay the blanket across the backrest of my legs so that it starts under my knees.…

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