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

I’ve been seeing people swear by the benefits of red light therapy for some time now. It’s the latest craze, but I wonder if it’s just a fad.

Nevertheless, I’m intrigued. I’ve been reading about its potential health benefits and also follow some people online who swear by it. It has definitely piqued my interest.

I know that this…

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Yes, I can definitely see this happening too, especially now that AI is available to us. I think more breakthroughs are on the horizon.

Bionews’ Community Editorial Manager Kevin Schaefer posted an interesting article from our sister site, Muscular Dystrophy News, in the company Slack chat the other day. It was about how adult patients are reporting major gaps in their healthcare, particularly for sexual and reproductive health.

I think this is a question every rare disease…

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agree. motor neuron regeneration is a priority. i think in 5 to 10 years it will reach human trials as a priority for adults and sma europe asked for proposals about this topic

I had to step away and collect my thoughts when I read this. Can’t even tell you how pissed I am on your behalf.

None of this is normal.

None of this is acceptable.

Your neurologist sounds awful. They’re supposed to be supporting you to stay engaged, not limiting your options. At this point, having one of those walkers with a seat on it would…

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I’m not surprised by this. The foundation of kink communities is radical consent. That looks like a lot of communication about what is OK, what isn’t, and what is negotiable.

When you get down to it, I think a lot of discomfort is based in not knowing if we can do X, Y and Z. Having an up front conversation eliminates all of that doubt.

I recently read an NYT article about a simple way to put stress into perspective, and it made me think about life with SMA. Here were the three questions the author said to ask yourself when you’re feeling overwhelmed: 

Is this permanent? 

Is this affecting everything? 

What part of this can I control? 

Sometimes SMA-related challenges,…

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Great idea, Kev!

Great responses from everyone! Objectification, fetishisation, and infantilisation really are such tough challenges to navigate. It’s worse when you think about how all those issues work hand-in-hand.

Oddly enough, after trying to get involved in local kink communities since writing this post, I’ve found people who genuinely find me attractive…

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I think a lot of us with SMA start doing our jobs in a roundabout way. I wouldn’t be where I am if Brie hadn’t introduced me to BioNews or saw a call for pitches for PCGamesN. One thing led to another. Now, I get to say I’ve won awards for my video games work and advocacy. It’s nuts.

My problem now is that all of my options light me up. So, we’ll…

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That’s still a number of options! Are you leaning towards one or the other these days?

Fantastic to hear your progression has stalled, Cam! Great that you’re so positive, too. Have you managed to re-try new or old activities since you started getting better?

I can relate to your experience, Susana. I don’t have plans for the current phase of my life either. Which can be a little frustrating when I watch my peers zoom past me. Yet old habits and beliefs die hard.

I tell myself that mental health professionals recommend taking one day at a time for a reason. That helps.

Like Cam, my jobs are more creative, and I started doing them in a very roundabout way. I went to a business university, and when I graduated with a marketing degree, I didn’t know what to do. Back then, working from home wasn’t really a thing yet, and I knew my body wouldn’t be able to handle the physical demands of full-time employment.…

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I’d bet good money that for most of the SMA stories we’ve heard, the patients got to stay with their parents. Unfortunately, that’s not the case for every patient. SMA News Today even reported on a case where a little girl in China with SMA was adopted a few years ago.

This is a topic that I believe is worth highlighting in our community, and I…

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It’s at the bottom

Hey, sorry Cam, I don’t see where I can enter the code on the purchase page.

@Cait I’m sorry you’re not having the best experience with your neurologist. Even though the other neurologist is two hours away, is that something totally out of the question? Could you somehow arrange travel to and from if given the proper resources? Well, are they willing to do telehealth if you send your medical record over to them? I…

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Your post got me thinking, Robin! Of course, living with SMA often means a shorter lifespan, but I wonder whether genetics plays a role as well. Both sides of my family have lived well into the 90s. My grandmother is one of nine, and although she lost a sibling due to the Spanish flu way back when, the rest of her siblings have lived into the…

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My work has largely been determined by what I can do, which is mostly creative in nature, either writing, 3D design, or software. And a career as a disabled person who relies on Medicaid not just for my healthcare but also for IHSS, managing income limits is its task. I run businesses partly so that I can control how much I pay myself.

As a homeschooled kid with SMA, I wasn’t expected to have a career. Therefore, no one really asked me the age-old question of what I want to be when I grow up. I never gave it much thought either. The lack of introspection regarding this question has left me with quite a conundrum recently.

I am now faced with three, maybe four, different choices…

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Yes, I play Dota and several racing games with it. And I’ve tried a single player FPS with it; multiplayer is so competitive that I haven’t tried that haha.

It’s your resident bisexual SMA News Today forum moderator here! On behalf of myself and the team here at BioNews, we would like to wish you all a happy Pride month. We know it can be rough out there for our queer siblings in the community, and so we’d like to reiterate that you’ll always have our support and forums as a safe space for…

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Thank you so much Cam! I’ll let you know how it goes next week.

Have you been able to use it for games that require quick actions?

Thank you so much Cam! I’ll let you know how it goes next week.

Have you been able to use it for games that require quick actions?

I just realized I didn’t even include a link to the software lol sorry

https://facecommand.net/

Yes, it’s possible to hold or toggle both left and right click with it. I use those features in my modeling and 3D printing software where right click and left click holds are necessary for positioning. I’ll send you a key.

I don’t really consider this exercise, but I do try to hold my head up for as long as possible without using the headrest while I am in my chair, just to try to work the very weak muscles in my neck.

I really loved one of Connie’s recent columns about exercises she can do in her wheelchair. Typically, when I think about exercising, I think about being on a table in physical therapy or going to aqua therapy. So I thought Connie’s ideas were very creative and helpful.

What types of wheelchair exercises do you do every day? Is there…

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Hi Cam,

I use Optikey too, as well as Tobii. I’m excited to try your software!

Is there a way to left click and drag with it? What about right click and drag?

Thanks! I’ll go check.

I don’t have those systems to test it with, but it should work with them just fine. I messaged you with a key, let me know how it works.

I’m wondering if it could be used in conjunction with a program like Optikey. I use a Surface Pro tablet with a Tobii 4C and Optikey, but, based on your description of your program, I’m thinking of multiple ways that everything could compliment each other and work even better.

I’d love to test it!

Good for you, Robin. I’ve just turned 73 with type 3 too and am doing pretty well for an ‘oldie!’

Hi Sherry and others,

Yes, I’ve greatly outlived the expectations of my childhood neurologist. She estimated I’d live to about age 45 as a type 3. I’m now age 70 and have fairly good health for a little old SMA lady!

(My Dad passed at 86 and my mom is now 96. Who knows what my future life will look like, but with all the advances in medicine, I…

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I have Type 1 and was given two years to live. I’m now about to turn 40, and with taking Everysdi my progression seems to have basically stopped. In fact, my swallowing has improved some over the last year. So I say hang in there and do whatever exercises you can to keep what you’ve got because we don’t know what other treatments will be…

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When I was diagnosed, prognosis was a tricky thing to pin down with SMA, they weren’t sure what to say to my parents. Someone mentioned Duchenne which, at the time, had a lifespan of 15. Even after they realized the mistake, they didn’t know what my lifespan could be. I have SMA II but I’ve got extra copies so that changes my outcome. The…

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Sorry for the delay, I didn’t see this until now. I messaged you.

Sorry for the delay, I didn’t see this until now. I sent you a message.

Would love to give it a go.

I’m so happy to hear that. Thanks for being here @PJ5 !

Thank you so much for sharing this with us, Susana. We are so happy to have you here and learn from your insights!

Couldn’t agree more! The vibe here is refreshing for sure.

Going to be brutally honest here. Spent much of my adult life avoiding the disability community because I kept coming across a persistent sound of self-pity. Was pleasantly surprised to find none of that here. Instead, I found a bunch of people living their lives.

I first came here to see if this community had solutions I hadn’t thought of for a…

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I can’t speak on disability being a fetish, but it is hard for people to get past infantilizing people with disabilities. That can be a difficult stereotype to navigate when so many stories cast the disabled as either the villain (outer flaw reflecting an inner flaw) or completely helpless. It doesn’t help that many of those characters are…

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Hi Cam,

Your software sounds amazing and very useful. I would love to get a key to try it out. Just let me know what I need to do!

Thanks

The Tilt-n-Space is similar to the one I have now, although mine is completely flat. I think it was going to the upright position, though. I’ll have to look into this.