Question for you guys, but first, story time!

I’ve been going to the Children’s Hospital for most of my life, simply because few doctors are trained in SMA, and I have a wonderful team there. Long story short, an adult clinic opened at a nearby hospital a few years ago, and I’m in the process of being transferred there.

I’ll be honest,… Read more

All great columns! I don’t think I’ve ever seen SMA portrayed in a medical drama, but to tell you the truth, I stopped watching them years ago because they bring back my own medical traumas from the past. 😅 I’ve debated watching The Pitt so many times, though. It looks so good.

I have to agree with Anna. I feel like when chronic illness…

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Ha, I like that message. Maybe I’ll leave a note on someone’s windshield next time. 😜

I hear you. That’s why I love this forum, because it reminds me that I’m not alone in the messy parts of life with SMA. 💛 Finding the right caregivers should be an Olympic sport.

I lost my main nurse back in December, and the past few months have been an absolute nightmare trying to find the right fit to replace her. Why are good caregivers so hard to find?!

Fortunately, we recently found someone, but I still feel like I’m holding my breath, waiting for something to go wrong. Let’s just say that I met a few colorful…

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Living with SMA isn’t just a physical disability. There is an emotional and mental aspect to it, too. Some days hit harder than others, like when fatigue feels all-consuming, or your body just doesn’t cooperate… it can wear on you.

What’s been the most frustrating part of SMA for you lately? Any coping strategies that have helped? Share as… Read more

That’s awesome. I’ve always said I wish that my doctors would integrate more Eastern medicine into their care for a more holistic approach. I’m going to have to take it upon myself to research TCM a little more.

Hey girl. My brain is convinced that 1995 was only 20 years ago, so by that logic, I guess I’m 25! 😜

These are great tips. Thank you for sharing. I do have some follow-up questions for you:

1. Do you receive PT every day?
2. Do you get acupuncture for other things besides your relationship with food? I went a few times, probably about ten years ago, and…

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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

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.

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

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

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.

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!

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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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’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

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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Ughhhhh, jealous! Miami’s idea of cold is essentially the same as a New England heat wave during the winter. It was 45 degrees here last week, and I was basking in the sun. 😆

I really like the idea of putting a blanket down on the seat first. I never thought of that! Typically, it’s my knees down that get the coldest and, ultimately, end up…

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That’s such a pretty cape! Do you wrap it over your joystick, or do you leave your hands/joystick outside of it?

As winter rears its ugly head, I’m reminded of one annual frustration I know many of us share: winter coats. 🙃

Between the bulkiness and how stiff/heavy they make our arms feel, coats make it so much harder to drive our wheelchairs safely. For me, the moment I put one on, I no longer fit just right into my seat and have trouble driving.… Read more

Before I saw that you said treat it like a drinking game, I thought to myself, “Hey, this would be a fun drinking game.” 😆

Thanks for sharing, Chris. That’s really interesting. I wonder how this project is going as I see the article was published in 2021.

Hi, everyone. As of today, the company will be out of office until January 2 and not as active on here during this time. If you have any questions or problems, please still reach out to @sherry-toh or me, and we will get back to you as soon as possible. 

In the meantime, I want to wish you all a very happy, healthy holiday! May we all find… Read more

Love how you introduced yourself as “retired inspirational porn star, Tiny Tim Cratchett” haha. You did a great job with this! Very clever!

Hi, Hosein. I don’t have any firsthand experience on this, and I know someone already mentioned contacting CureSMA. However, I do know that the SMA clinic I go to in Boston, Massachusetts handles out-of-country patients and provides treatment for those not living in the U.S. You could try contacting them as well. Here is their information. …

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The holiday season is upon us, and I’d love to hear how everyone prepares. After all, this time of year can feel extra stressful, trying to keep up with the usual holiday chaos.

What helps you get through it? Are there any strategies you’re planning to lean on this year? With Christmas and Hanukkah, do you and your family have plans to keep… Read more

I am, too. Please share it here if you get a chance!

These are both great ideas. I’m sure now with AI, the ability to track short-term and long-term patterns is not something that’s too far away. Now if only we had an app developer to create something like this.

Wow! There’s a lot of great information here. Thank you for sharing. I don’t know too much about technology, so this post is extremely insightful. I have used iPhone Mirrorring on my Mac quite a bit. I believe they released it last year, and it’s been super helpful for me because often times my arms get too tired to reach the buttons on my phone.

I think a super-organized digital planner focused strictly on medical appointments would be amazing. There would be different sections for appointment notes, medications, test results, and more. Maybe this already exists. I’m not sure!