Recently, SMA News Today published a research article on how poor muscle signaling could lead to bone loss. The post was coincidentally uploaded a few days around the time I had a conversation with a friend that I was more at risk of osteoporosis than I thought. It sparked a feeling of, “Where was this all my life?” The research is so much…

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Hi Alyssa! I felt that when I visited Florida back in 2023 for the Cure SMA conference I, too, felt weak, dizzy, and belabored breathing. I had been in FL before but this time I felt…bad. What works for me is limiting time in direct sun and drinking lots of water. I understand that many of us don’t have the luxury of going to the bathroom…

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Don’t get me wrong. I prefer the summer season over winter any day of the year. And that is an understatement. However, there has been a lot of heat and humidity this year, which has affected my body, especially my breathing and fatigue. The air has just been so heavy here in southern New England.

Do you notice your symptoms worsening when…

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I use Wispr Flow. I think it works so well because AI is built into it, so it can predict what I’m saying, even when it can’t understand me well. It probably gets my words right 85% of the time.

That’s funny. 😆 Sometimes my New England accent slips out when I’m dictating, and it even understands that haha.

Exactly and I have a saying that keeps me going. The saying is “Life doesn’t always follow the plan. What you do next matters”

What voice-to-text software have you guys used? Any recommendations? I’m so over my inability to get my dictation right..

Absolutely, a prognosis is simply an educated guess dependent on the data available at the moment. We have much better data now. When I was diagnosed, you would only be tested if you were showing symptoms which generally applied to type I or II, I’m guessing there’s a lot of type III who historically were never diagnosed.

But even so that…

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Until last year we have paid for my care out of pocket. That is financially draining and becomes prohibitive as I need more care. There’s also caretaker fatigue that you have to consider. Our family members love us, but taking care of us can be a lot. It never ends. Getting help on the weekends has made a huge difference in our home.

One trick…

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Wow, that is a good question,

The problem with the prognosis is nothing more than an educated guess sometimes based on as much factual data as you can have. The fact of the matter is that reality, maybe sometimes trumps the prognosis. Case in point. I was diagnosed with SMA III in 2005 and when I talked to the doctor, the prognosis was, I would…

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Yay glad it understands you! My talk texting doesn’t always write what I say. My husband says it doesn’t understand redneck! 😂

It’s definitely a hack if it saves you energy haha.

I’ve started using voice-to-text occasionally, too. I’m amazed that the technology can now “hear” what we’re saying. It couldn’t understand me at all when it was first introduced.

Given that we are encouraged to take care of ourselves precisely so we can live life, I’d say helping us with our adult lives is definitely part of healthcare management. That’s one of the reasons we have social workers, no?

I’m in a position now where I need two caregivers, but the financial toll is straining my parents. At the same time, I…

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My paternal grandmother is now 97. Just survived two operations for stage 2 colon cancer. Her mind is as lucid as ever and she’s still able to be mobile. Makes me really hope you’re right, Alyssa. 😂

Hey Cait. Like Alyssa and Susana, I’m appalled by the treatment you’ve received from your neurologists. I was at a talk recently where my neurologist’s senior did a presentation: in it, he said only half of all the SMA patients at my hospital have received Evrysdi due to things like cost, and he implied that result was a failure of the…

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I know this isn’t specifically health management, but it does affect mental health: adult engagement and life plans.

Most of us went to camp, it’s always easy to have activities and raise money for little kids.

Adulting is different. Adulting with a disability is very different. I don’t think we talk enough about accessible career goals.…

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Y’all, we did it! We made it through more than half of 2026!

I’m sure the year has surprised us all, personally and in our careers, hobbies, and favorite media. In good or bad ways, I wanted to give you a space to share, vent, celebrate, or do anything you need to do.

All we moderators ask is that the conversation remains respectful. 😊

I’ll…

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July is Disability Pride Month, a time to celebrate the history, accomplishments, and experiences within the disabled community. Disability pride can mean something different to everyone, whether you celebrate it wholeheartedly or have more complicated feelings about the word “pride.”

Has your relationship with your disability changed over…

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That’s good to know. I didn’t realize different red light therapies achieve different results. Thank you!

To be honest, I never really thought of it until your last post! The next time I have an appointment at the clinic, I will ask them this question. It kind of makes sense, right?

I don’t know if you would consider this a hack, but last year I switched to voice-to-text software, and it was truly a game-changer. Before this, I would either use my on-screen keyboard or type on my iPhone. It was tedious and took forever just because of my physical limitations. Now I’ve increased my productivity so much because all I have to…

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In our fast-paced world, it’s a fact of life that we have to produce, produce, produce, go, go, go. That’s how we survive. However, that’s not always possible with a disability like SMA; it’s even harder if you have multiple disabilities.

Ergo, we have to come up with hacks to adapt. I’ve recently started using apps to have a “body double”…

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Definitely do some research on the different wavelengths before you pick one. Some are only for skin, while others go much deeper. I chose a model that has a mix of bulbs, because, at the time, I thought it would be good to have one that could help with both topical and deep tissue… But if I were to order now, I’d probably prioritize the…

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That’s really interesting. I really want to try it!

Hey guys, I’m sorry I don’t post much anymore. I have lost all the muscles in my arms and I am 100% reliant on other people. My mom is typing this for me. Without a lot of details of what has happened cuz it is too much but I am pretty desperate about something else and I don’t know where else to turn. My constipation has become…

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Alyssa, I’m embarrassed to admit that I never really thought about others’ genetics. How silly of me. Since scientists are still learning about SMA and the different ways it affects us, it’s definitely something to consider. We already know that SMA has a wide spectrum, and the number of copies of SMN2 is only a part of the equation (for…

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It’s nice to meet you. I don’t meet that many adults over 70, but I know there are probably quite a few. Have you ever attended a CureSMA conference? I just returned from WDW.

The effects are not super noticeable, but, yes, it helps. My Mom also uses it, usually on her wrists, which have issues. She tries to use it at least a few times per week, and when she doesn’t use it for a whole week, she starts to have more more pain.

I got mine from GembaRed. Mine is a Vector, but they have a few different Vectors.

That’s good to know. Does it help? If you don’t mind sharing, where did you buy yours?

I have one and try to use it every day, for general benefits, but I also use it for more acute issues like pain.