Feels like a weird question, doesn’t it? Mobility aids, respiratory aids, etc — they all exist to be medical solutions.

But when I was writing my latest column about how toy cars my parents bought for me were effectively mobility aids like wheelchairs, despite not being designed to be wheelchairs, I realized a lot of us use or have used things…

Read more

For sure!

That’s great!

Thanks for your input, Mike. I do agree that the explanation varies depending on the situation that I’m in. In the case with the nurses, I never know how much information to divulge, especially if I’m not going to hire them. But you have some great points and ideas here that I will have to pocket for the future.

Thanks, Kev. Yeah, I transferred from my pediatric PCP to an adult one about ten years ago. I was so worried about that transition, but honestly, my doctors in Boston take care of all my needs, so I didn’t have much to worry about in hindsight. 😆

I’m sure I will be in good hands at the new hospital. I just need to tell my anxiety that!

This is so cool, Mike! Congratulations. When it’s posted on YouTube, you should definitely share the link here

Hey Mike, congrats! Thanks for sharing!

I hope it’s okay to post this, but if not, moderators please moderate.

I received this from the producer of the MotorWeek program on PBS. This segment features yours truly.

The “FYI” TV segment about adaptive vehicles is airing nationwide on MotorWeek (Episode #33) from 4/17-4/23. Use this link to search when and where it’s on TV in cities…

Read more

Hey Alyssa –

To me, I think it depends on the situation and who you’re explaining it to. If it’s a medical person, more detail. If it’s someone curious, then less. In your situation, I would handle those interviews like I used to handle job interviews at work before I retired. Most of my evaluation of their technical skills were from their…

Read more

I love that you and Dennis got to meet! That’s awesome. For me, I am in a unique situation in that the children’s clinic kept me and other adults there. That’s been super helpful. However, my longtime neurologist and pulmonologist both left a few years ago for other jobs. It was really hard saying goodbye to them, but fortunately, the ones…

Read more

Thanks! Yeah, the portrayals are typically very dehumanizing and cliché. That’s what I like about “The Pitt.” The writers really go the extra mile to humanize the patients.

And I never watched House, but I know what you’re talking about. The guy who wrote that episode is actually an SMA parent who I had on the podcast a few years ago. We met…

Read more

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…

Read more

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.

Hello, SMA community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

Finding new caregivers is always the hardest part for me! Fortunately, I’m in a good spot right now, but there’s always that anxiety about if and when things will change. I just kind of take things day by day, but the mental and emotional toll is something we all deal with.

I would most likely not go as far as vandalism, like scratching the car with my wheelchair by just trying to get by of course. But if it is dirty enough it might be fun to have someone write a message. “Morally Weak”

Yes!!

Obviously, insurance issues may be presented, but I will try my best to try this treatment that supplements Evrysdi and Spinraza. As mentioned in the aging tips and tricks response, the areas with the most concentration of viable motor neurons are the areas least affected by SMA. In those areas, apitegromab will remove the limitations…

Read more

Great topic. 63 years old, type 3, ambulatory until just under 11 years ago.

Susana’s ‘keep moving’ point is huge. This applies to everyone, not just those of us within the SMA community.

At one time I did acupuncture with a TCM trained acupuncturist. Not someone who read “Acupuncture for Dummies”, etc. Her and her husband relocated to the…

Read more

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…

Read more

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

With apitegromab creating buzz in the SMA community lately, it’s doubtless that we’ve all entertained thoughts about it. While it is still waiting for FDA-approval, doctors may offer it to patients as an option, and we’ll have to make a decision.

I wondered: how many of us are keen to receive it? And what are the reasons that we might or…

Read more

I’m in my mid 30’s with type III. My hips have been bad since my teens. I have a torn labrum that cannot be fixed, arthritis, and effusion(fluid) in both hips. My back and shoulders are starting to act up now and again too. With SMA we don’t have the proper muscle mass holding joints together, so that causes arthritis and the body tries…

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…

Read more

Grrrl, age is a state of mind.

That being said, the reality is that aging affects our bodies more than perfectly healthy bodies. Joints creak more, fatigue sets in earlier, crazy adventures have less appeal. But there’s always things you can do to mitigate those effects.

Like Sherry, I’m a big fan of TCM. I see an acupuncturist every week and…

Read more

In a recent column I wrote, I critiqued how a new sci-fi, body horror series fell short in its rare disease representation. “The Beauty” does appear well-intentioned, but I wish the rare disease cases featured had more agency in the story.

That made me think: what are some aspects of living with SMA that the community at large would like to…

Read more

I found this while searching for info on extractions and SMA. How did your recovery go with the cough assist? Avoiding straws is a big one, but using a small cup for sips or even a syringe to drop water in the back of the throat helps prevent that dry socket vacuum. To resolve the stress of finding a place that understands these medical risks,…

Read more

Semester break in Singapore means my 13-year-old brother is home. If you have kids around you often, you know it’s time to plan entertainment and bonding time before you drive each other up the wall.

Sadly, it’s not easy to find accessible activities that active kids can enjoy.

I was hoping that if y’all have been or are in a similar…

Read more

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,…

Read more

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…

Read more

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…

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.

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…

Read more

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…

Read more

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…

Read more

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…

Read more

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…

Read more

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 …

Read more

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