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…

Read more

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…

Read more

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.

I’ve used regular $20 camping chairs for the last several years. They’re much more conducive to supporting our shapes than the typical rigid shower chairs, and they’re portable and cheap. But they are low and don’t have wheels so it’s harder on caregivers, so I’m also in the process of getting a proper shower chair through insurance. I’m…

Read more

Hi cam, love what you do with your accessibility company!! I always wished for some kind of facial recognition software that could give commands to a PC. Also It’s really cool you use Letterboxd, i do too! I’ll check your account out and leave some likes if you have any reviews.

I watch a wide range of movies, but my favorites are sci-fi and horror. Cronenberg is one of my favorite directors. Here’s my letterboxd account https://letterboxd.com/omnibob/

For gardening, we have several fruit trees as well as some grapes that grow on a pergola that we built. We converted our front yard from grass to native pollinating…

Read more

I’ve been working on it for about 3 months.

Hi everyone, you may have already received the invitation, but I wanted to let you know about a new group in the forums called SMA Conversations!

This group exists to provide the SMA community with a supportive place to connect, ask questions, and share experiences. There is no pressure to post, but I wanted you to know about this new space… Read more

I would never be able to go on a trip like that on short notice. However, I was definitely more spontaneous in my twenties than I am now in my thirties. That said, my idea of spontaneity is probably very different from that of a non-disabled person. It was usually contingent on whether I had caregivers, whether I was feeling well that day,…

Read more

Thank you for sharing a little more about yourself and your grandson. You both sound very lucky to have each other. 🙂

If you don’t mind me asking, how is he doing on Zolgensma? Have you noticed any improvement in his motor function?

Hi Sam, thanks for checking in!😃

Hey, Cam, welcome. Thanks for the introduction!

What type of movies do you like to watch?

Also, what type of gardening do you like to do? My dad has a vegetable garden, and unfortunately, this year the rabbits have dined on it… twice… Any tips you have to prevent this from happening? 😅

Hey Cam, that’s really awesome! Technology like this is so over my head. I wouldn’t know where to even start. How long did it take to develop this software?

💯

I’ve developed a piece of software that is specifically made for people like us with very limited mobility. It uses a regular webcam to turn facial gestures into computer commands. For instance, left wink can be left click, right wink can be right click, and eyebrow raise can press Enter. There are 12 distinct gestures plus head directions,…

Read more

Hi! Nice to meet you.

Hi all,

I’m Cameron. I’m 39 and have type 1. I’m from Mobile, Alabama; I moved to Denver in 2010, met my wife there and then moved to to her hometown of Sacramento in 2017.

My time is spent doing some boring document management work as well as running a startup that develops accessibility software and hardware systems. Our first product is a…

Read more

I’m here for my grandson. He is 8yo, and type 1. He was born symptomatic, and received zolgensma in clinical trial. He is non-ambulatory, and when he gets sick, it can lead to an extended hospital stay. So, I am here for him, and for myself too. I am his primary caregiver.

My heart hurts for him, however, he is as happy as a lark! 🙂

I once read that SMA influencer Shane Burcaw took a trip with his brother on a whim. As someone who requires time to plan and prepare almost every outing, that blew my mind — SMA makes everything unpredictable. How could he pack and go just like that? What if the streets were tough to navigate? What if he needed to go to the ER?

I do envy people…

Read more

Living with a rare disease can feel isolating. Between doctor appointments, equipment, insurance battles, accessibility challenges, and the emotional ups and downs, it’s easy to feel like you’re carrying a lot on your own.

That’s why I am so grateful for this community and the space we have here to help each other out. There’s something… Read more

If beauty is in the eye of the beholder, then sexiness is found in the mind’s perception. I think that people consider many qualities sexy, different parts of the body, different attributes, different aspects of personality… So perhaps SMA may make the 1st category more unusual, but not the others. Confidence and intelligence are widely known…

Read more

We have done a book/movie club in the past. I would love to bring this back!

Hey, forum members! As Bionews is implementing some behind-the-scenes changes, we’ve been trying to think of more ways for us to engage the community. One idea I had was to come up with games and activities we could post from time to time.

That said, I wanted to first gauge interest and gather information on what type of activities you’d be…

Read more

Agreed. I was thinking the same thing.

I know this isn’t specifically related to treatments, but I hope that in the future we see more established care for SMA with adults. Now with treatments, children with SMA are becoming adults with SMA. Life expectancy is increasing, and people are thriving, but I’m finding that there aren’t many programs…

Read more

Please help me figure out whether I’m losing my mind or actually onto something.

I swear my wheelchair battery has been dying more quickly these days, but then I start to second-guess myself. Maybe it’s just because I’ve been more active? Or maybe I never truly paid attention to how long it actually lasts?

I just got a new battery put… Read more

An acquaintance I knew with muscular dystrophy recently passed away at 36. In light of that, I’ve been thinking a lot about the prognosis I was given with my SMA diagnosis versus the reality I’ve lived. My parents were told I’d live until 3. I’m nearing my 30s myself now. That’s 10 times the years doctors thought I’d have.

I’m not sure what…

Read more

I think the next most important step in SMA treatments will be motor neuron regeneration or creation. Not a single treatment developed up to this point, and I celebrate and appreciate every one of them, can undo prior damage. That means they will have limited efficacy. Even Ivitsma, which I am not personally pursuing, will most likely…

Read more

I’m just sitting here thinking about how much the landscape for SMA has changed in the last ten years alone. We’ve had several treatments approved, breakthroughs in medicine, and amazing outcomes in the community. 

It is truly mind-blowing in the best way, and it really feels like the trajectory of this disease is changing right before… Read more

Awesome. I will look into it. Thank you!

Thank you for sharing. I’ve been looking at chairs with wheels but didn’t even consider them getting rusted. That makes sense, though.

Hey, great column! I can definitely relate to what you said. I’ve been through the phases of feeling self-conscious about my body, not wanting to be judged by others. I’ve also tried covering up my skin and hiding parts of my body that I felt didn’t fit society’s “standards” of beauty. But now that I’m older, I realize that it’s all so silly.

To…

Read more

So, my experience is that there are people attracted specifically to individuals with disabilities, but it tends to fall under being considered a ‘fetsh’, and many shy away from their disability being viewed in this way. It is much harder to get those in more regular dating circles to look past the wheelchair and be viewed as…

Read more

We have gone through more then a dozen shower chairs in my life. The main problem with 90 percent of shower chairs is the wheels. The axle always rust after only a few weeks making the chair virtually unusable. Replacement wheels typically cost nearly the entire cost of the chair. They are generally one size fits all made of cheap pvc with…

Read more

Given how pervasive the infantilization and desexualization of people with disabilities are, not to mention traditionalist views about modesty and all, I wrote a column to ask: Can disabled people be sexy? What does “sexy” even mean to us, individually and collectively? How would we achieve that vibe, with the different shapes our bodies take…

Read more

The only bath chair that I have used is called an AquaTec bath lift. It raises and lowers into the bath tub with water pressure. Unfortunately, the company doesn’t make them this way anymore. The bath lifts now come with a battery that has to be charged when using the bath lift. It is not ideal but some still like this type of bath chair.

I really enjoyed this column by fellow SMAer Connie Chandler, in which she explored the balance between joy and sorrow. I especially like when she said, ”The balance is not in pretending that either doesn’t exist; it’s letting both tell the truth, without letting either one take over.”

That idea resonated with me because sometimes… Read more

Oh, I’m so sorry to hear this! Losing a pet is never easy. Your boy sounds like he was your soul dog. 💛 I lost my soul dog back in 2014, and it was the first real heartbreak I had ever experienced. I miss him to this day, but the love he gave me and the life he taught me make me feel like he’s still with me and always will be.

Hang in there, my…

Read more

Last month I had to put down my 15-year-old havapoo Strider. 😥 My parents did all the physical care, but he really was my dog. He sat in my bed every night while I watched TV.

We have two younger dogs (Samwise and Sancho). I love them a lot, but they still need some training before they’ll cuddle with me like Strider used to.

I can’t live without my heating pads. Hot showers help, too. On the days when my pain is bad, I will take ibuprofen. In another forum, a few people brought up CBD lotion. I haven’t tried it yet, but I’m wondering if it can help with neck pain as well. Have you ever tried it before?

Yes, this is super helpful. Thank you so much. Do you have any bath chairs that you would recommend?

Aww 🥰 yeah, doodles are so intelligent! My friend has a Bernedoodle, and we taught him how to hug me while I’m lying down. Basically, he comes over to me and puts his head in the nape of my neck and gives me a quick snug. It’s the sweetest thing in the world. I cried happy tears when he did it for the first time hahaha. Dogs are truly the best.

Until recently, I hadn’t invested my time in mobile gaming since… I was a kid. Because, despite them being on a device with a touchscreen, all the movement required made mobile games inaccessible to me. Things have changed, now that there are more accessibility settings on smartphones and apps, and I don’t become fatigued easily thanks to Read more