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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Hi everyone! I’ve got a tip for you:

Having SMA means that, whether you like it or not, you have a lot of responsibilities and you can’t put off “being an adult” because your health could easily be affected. And if you’re anything like me, you prefer to have routines and strict schedules so that you don’t forget anything. But having SMA also…

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Thank you for starting this discussion, Sherry. Reading everyone’s experiences is a good reminder that a prognosis is based on what is known at the time, but each person’s journey can be different. It is encouraging to see how many people have exceeded expectations. I think conversations like this help put things into perspective and remind us…

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One thing to check is how accessible the ports and shore excursions are, since they can vary from place to place. It may also help to contact the cruise line before booking to ask about accessible transportation, equipment rentals, and any accommodations they offer. Having those details ahead of time can make planning much easier.

Hi there, thanks for asking!

To participate in the challenge, simply complete the actions on the shared Bingo square. There’s no need to register or download the square.

At the end of the month, we’ll offer the opportunity for participants to submit whether they completed one row, two, or the whole card for a chance to win!

@CrystalH hello! Tagging you here.

Hi everyone! I was so excited to read about the Bingo game for August. It sounds super fun and, if I’m being honest, the prizes sound awesome. However, I can’t figure out how to register and I don’t understand we will fill out the cards so that we can receive the prize. Can anyone walk me through this please? Thank you.

Thank you. I have thought about an enema cuz I am that desperate. However, 1). I was warned against enemas in my case from the nurses and doctors at a specialty hospital I was in previously cuz my bowel movements become extremely acidic even after a suppository and they didn’t want an enema to make it become so acidic that it tears up the skin…

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Hi! I went to Spain recently for the wedding of a friend, and I managed to communicate in Spanish. Not SMA-related, but a win!

For a SMA related, maybe that I started physio last year. But I am not sure it’s useful so might stop it😅

Hi! I’m so sorry you’re going through all this.

I don’t have experience with a colostomy, so I can’t comment on that. I just wanted to share something that has helped me personally. Enemas have made a huge difference for my constipation. I noticed you mentioned laxatives, suppositories and probiotics, but not enemas. I don’t know if you’ve…

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Hi! I haven’t really received a specific prognosis, or at least my Mother didn’t share anything, but I knew since childhood that people with my condition (type II) don’t usually live much. But I also knew at the same time that you never know, and that’s helpful. Now I am 38 and still counting.

It’s good and empowering to read all the experiences…

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Hi! I started using AI more regularly (but with control), and this helped. I am typing with a screen keyboard, so AI can really help with drafts etc, and save time. Then you just have to correct and add your personal touch.

Another tip that helped is reducing social media time😅

Hi Diana! Sorry for the very late reply. I hope that all went well and you enjoyed Spain!

Hi Alyssa! Thank you for the welcoming and sorry for the very late reply!

Some spots Greece are even more beautiful in real life, with pretty much everything, from sea to mountains etc. Our cities are rather ugly and dirty, but with lots of things to do.

As for Evrysdi, to be honest I haven’t noticed much change. Maybe swallowing improved,…

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I appreciate all yall have said. But I’m just at a point where I don’t want to do anything. It baffles me that most of yall have the motivation. Or at the very least will force yourself to better your mental and emotional well being. I don’t like people. I don’t have passions, I am just waiting for life to pass. To be frank, I am only on the…

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As a father of a little girl with SMA Type 1, I truly understand how challenging this journey can be. Wishing you strength, hope, and better days ahead. ❤️

Thank you for sharing your story. Wishing you and your family strength and all the best. ❤️

Hello everyone! I’m happy to be here. Thank you for welcoming my family. ❤️

1. Thank you! ❤️

Thank you! ❤️

Inspired by beauty influencers comparing bold 2016 makeup to “clean girl” 2026 makeup, I am curious about the differences between ourselves a decade ago and today.

What were our relationships with SMA like vs now? How have our beliefs in the world changed? Are we where we thought we’d be?

As always, be respectful in the discussion. I will add…

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