Where I come from, they are always quick to verbalize empathy rather than discuss pragmatic ways to ensure accessibility. For example, nearly all the new stores around me do not have ramps, but you have someone posted at the door telling you “sorry madame” as you try to navigate the entrance.

The more I try to point this out in discussions,…

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Everyone, congratulate yourselves on another SMA Awareness Month survived. Another month of reflection, discussions, celebrations, and sighing at nondisabled people expecting us to tell them everything about SMA even though Google is free. We made it!

Though we all know the work doesn’t end here, I’d like to encourage everyone to take a pause…

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57, that’s great! Keep going and double it!

With prognosis (and diagnosis – this I have) I meant estimation of how much I will live.

As for the test, in Greece we don’t have local SMA clinics, so I would need to look around. I guess it’s possible but it’s not a priority.

You’re definitely not the only one. I think, until very recently, research focused on mobility, breathing, and other immediate SMA complications tied to survival. Now that we have many treatments to address these issues, maybe that’s why research is expanding to a more holistic approach.

I do understand your frustrations, though. At the same…

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So true. I think oftentimes we are clumped together under the “disabled” umbrella, but what people don’t realize is that so many different diversities exist in the disability community and even across similar diagnoses.

Cutting back on social media is a big one for me too!

Something people forget all the time is the diversity within the disability community. Our personal experience has to do with access for wheelchairs or walkers, but disability covers visual impairment, deaf community, little people and all sorts of other issues.

The economic argument is definitely the way to go. It’s always about the money. If…

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I was just talking about this with a few students of a friend today. Nondisabled people utilise accessibility. All. The. Time.

I think the only category where you can’t say accessible = universal is makeup. The type of formulas and packaging people enjoy differs exceptionally from individual to individual. Skin type alone dictates what you…

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Oh yeah, reducing my social media time meant I could READ BOOKS again… Who knew? 😂

I had a gastro doctor come by my ward once and explain to me that weak digestive muscles sometimes means waste doesn’t completely clear. Interesting that you said there’s no studies on that yet. I think I’ll mention this and the rest of what you brought up to my neuro.

If you’re living with a disability, you may have heard of ABLE accounts but never really known how they work.

Generally speaking, an ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account for eligible people with disabilities. It can help you save and pay for qualified disability-related expenses while potentially…

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Exactly. It took me a long time to feel this way, but I’m glad I finally do.

It’s definitely rare…

I can think of a couple movies that I thought were better but they’re few and far between… And that’s probably because the books were bloated to begin with and the movie might have made one or two changes for the better. Fight Club comes to mind, but it’s been many years since I read or watched it… Maybe The Road,…

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lol

Yeah, everyone seems to be *really* into rock-climbing, pickleball, and/or kayaking. Especially pickleball… Tons of pickleball (I had to look it up).

Haven’t tried any others but Hinge was one that popped up.

Sooo true, Jeff. Can we get this printed on a billboard? The world needs to hear this message.

This is such an important distinction. Disability pride doesn’t mean we have to love being disabled or pretend it’s easy. We can hate the exhaustion, the limitations, the way the world treats us, and still be incredibly proud of the way we’ve found ways to live our lives anyway.

And I really love your point that none of us chose this, but we…

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What, like rock climbing is hard? 😉

Just kidding. Dating apps can be tricky, and I don’t have much advice since I don’t use them, but have you tried Hinge? I know a lot of people have had success there.

Also, yes! By commenting on an old post, you are bumping this to the top on the activity page. So hopefully, more people will chime in.

I haven’t read these books, but I just have to say… is there any TV adaptation better than the actual book? I have yet to find one, and it’s so disappointing! That said, I know books have so much more to offer in terms of information than a TV show or movie.

I hear you. Beyond the cost, I think people often believe accessibility is only for a small percentage of the population, but that’s really not the case. Things like curb cuts, automatic doors, electric toothbrushes, and more benefit everyone but were designed specifically for people with disabilities. It just shows that when you design…

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I know this is another older thread but…

If you’re open to sci-fi the Murderbot series is good fun and pretty light reading. I mostly do audio books, and I think they tend to be around 2-1/2 to 3-1/2 hours each. There’s also a tv series now on Apple but I’ve been disappointed with it so far (s1).

I’m currently hooked on The First Law Trilogy…

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I’m just now seeing this but I think that what Susanna said is right on the nose. I don’t think anyone else could explain it any better. I do want to add something, however.

“…shame as if we chose this”. None of us like being disabled. How can we? Not only is it exhausting, painful, expensive, etc., but with how the world and the media…

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This is interesting to read considering I’m having the opposite problem. For context, I’ve been suffering from constipation for a few years now although it doesn’t look like what most people consider to be constipation (hard stools that they can’t push out). My constipation is more like being full of stool and not being able to push it out…

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Not sure if this will be seen, being an old thread (is “bumping” old threads still a thing?). Just curious if anyone has any specific app recommendations?

I signed up for Bumble and Dateability (one specifically for disabled dating). The latter seems to have very few users and virtually none in my area, despite having the most ratings on…

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I wish people knew that SMA affects my muscles, but it doesn’t affect my determination, intelligence, ambition, or desire to live a full and meaningful life. I may need to approach certain tasks differently, avoid stairs, use a higher chair, or ask for help, but needing an accommodation should never be mistaken for lacking ability.

SMA is part of…

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Brie’s recent column about medical trauma is a conversation I don’t think we have often enough.

After all, living with SMA means that we spend a lot of time in medical settings… Appointments, procedures, blood draws, scans, or maybe experiences where something went wrong, you weren’t listened to, or you felt like you had little control over…

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Thank you guys.

I think my plan is to mention it when the caseworker comes on Tuesday and see how that goes. And then I’m trying to give my brother a break as much as I can. It’s just hard because my body has a mind of its own apparently. But I’m trying.

Still, I appreciate everything you guys have said. I definitely feel better now. At least…

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Hey Crystal. It looks like Susana and Sherry have already given you some solid advice to consider. I’m sorry you’re going through this. Please know that we support you here.

Hey Crystal. I can see where you’re coming from. While I’ve never been told I’m not mentally fit to make my own decisions, I have been told before that I’m “too naive” or “not mature enough.”

It sounds like your hurt is coming mostly from having more of your agency taken away from you, when you don’t feel like you have anything much as is. And…

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He never mentions my sugar intake. He is concerned about me aspirating it because of my weak throat muscles. We all know how hard it is to fight pneumonia. He thinks that I will get pneumonia from having too much candy, but before he took over, I was having way more candy and I wasn’t getting pneumonia. I’m not saying that I never got sick but…

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Crystal,

This is a very complex situation so I’m going to try to address a couple details.

First, he sounds like he is in caretaker burnout. This kind of conflict happens when our caretakers don’t get a break. You two need a timeout from each other.

As long as you are of sound mind and are able to make decisions, you are still the one making…

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These are all great points and so true, Susana. I think, to add to your list, I’ll say:

1. Please talk to me directly, not the person I’m with. If I need help communicating, I will let you know.
2. Being in a wheelchair is not a tragedy. It actually allows me to explore the world.
3. I’m disabled and happy, confident, ambitious, messy, stubborn,…

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I can’t imagine summertime in Florida. The weathermen here have been saying all summer that we keep getting Florida-like humidity, and I’m just like, “Nope, this is not for me.”

Does it dip below 55° where you are often? I think my body has developed some resistance to the cold, but anything below 45° isn’t for me.

Hey guys, I would like your opinion on something but before I ask the question, I think I should fill you in on a few details:

1). I had a speech therapist explain that it is safe for me to have things that melt in my mouth even though I am NPO – as long as I am responsible about it. So I like to have butterscotches,…

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A downside to being an accessibility advocate for nearly the entirety of my career is that I forget the majority of people don’t understand the importance of accessibility. One of the misconceptions many still unfortunately believe is that accessibility costs more than the status quo. It took talking to someone outside the community recently for…

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Impossible to narrow it down so I’m going to give you a list of many things I wish people knew.

1. My brain works perfectly well, no need to talk around me or act as if I don’t understand you.

2. I can’t reach up to shake your hand, but you’re welcome to ask if you can take my hand.

3. Yes, we flirt, we date, sometimes we even have sex.…

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Matthew, when you’re in a depressive cycle, everything feels overwhelming. We get it.

Try one thing.

Keep it small and simple.

I’m gonna give you a couple suggestions and you decide if you want to try any of them.

Sing. Sounds ridiculous, right? When you’re singing, your focus is not on your body, it’s on the lyrics. It also offers breath…

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It sounds like you don’t have a specific diagnosis. Have you considered getting genetically tested? It’s basically a cheek swab and is very precise as to diagnosis. Your local SMA clinic should be able to offer this.

I’m also type II and currently 57 so I’m not sure where the information of not living much came from.

Growing up in Florida I completely understand what you guys are talking about. The truth is the heat doesn’t affect me nearly as much as the cold. In the summer, I limit how much time I’m outside, especially from 1 – 5 PM. Hydration, shade, misters, all help.

BTW, native Floridians know to stay out of the heat during August. The combination of…

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Having to do pee math is definitely a struggle with SMA. I could never go to Florida in the summertime due to the humidity. I would be locked inside my house all season long. We’re actually experiencing worse-than-Florida weather right now in the Northeast. It’s oppressive out there. I wouldn’t last five minutes!

I know it’s a double-edged sword. The heat affects me in some ways but actually helps others. My strength is never affected in warm weather, but it will affect my dizziness and fatigue (tiredness).

But I hear you. Once the cold weather hits, my muscles decide to hibernate too.

Hey, a win’s a win! Mucho bien. 😜

Thanks for allowing me to brush up on my Español un poquito.

SMA Awareness Month is all about helping others better understand our community.

If you had the chance to share just one message with someone who knows very little about SMA, what would it be?

Maybe it’s a common misconception you’d like to clear up, something you wish people would ask instead of assuming, or a lesson you’ve learned through…

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