Alyssa Silva

I have an F3 too, but I’m not sure how to answer your question. What do you mean by deflate? I don’t usually do any maintenance on my chair but I’m about to embark on the journey of getting a new seat. They’re coming to my house to do it, so hopefully, they can do a home visit T for you too. I guess it all depends on how extensive the issue is.

Haha your voice definitely does not sound annoying! And that’s true. I always wonder if when people tell me they have trouble hearing, they’re using it as an excuse because they feel bad saying they can’t understand me. I think I’m just paranoid honestly. Of what, I’m not really sure.

Yeah my thoughts exactly. 😂 If I can, I force my caregiver to make my phone calls for me. In my defense, people have difficulty understanding me sometimes. So it’s just easier to have someone else make my calls if it’s like making a vet appointment for my dog or customer service. Something simple. But I still get self-conscious in everyday con…[Read more]

Oh cool! That sounds like it would be a shame solution but unfortunately, I use my phone as a mouse for my laptop. It connects through an app called WiFi mouse. So I wouldn’t be able to mirror my screen because then I wouldn’t have a mouse. Thank you for the suggestion though! That’s a great accessibility feature.

Hmm, I don’t think I’ve heard of Gigi & Nate. However, I’m not the biggest moviegoer. From what you’ve said though it sounds like another Hollywood film that misrepresents the life of a quadriplegic. The premise of it sounds good. But I’m so sick and tired of Hollywood portraying disabled folks only as sad and tragic. Like you said, they’re p…[Read more]

The switches looked promising but you can’t have Switches and Assistive Touch on simultaneously. I have no idea why that is but I need Assistive Touch for sure. So switches are unfortunately out for me. I may just end up downgrading too, but I’m still super frustrated that they dropped the mini. Hopefully, we’ll see improvements with next year’s phones.

I’m super curious to hear your thoughts! I’ve read mixed reviews.

The first word (or theme) that comes to my mind is resiliency. And what was so amazing to me was that every story was so unique but still somehow resonated. They all related to the SMA experience.

Awesome video. Katie (and the others involved) did a great job picking this year’s contributors.

It was such a pleasure reading everyone’s stories this August! Drew’s personal story and advice were a great way to close out the month. I definitely need to have more patience when it comes to building a solid care team. Good, hardworking caregivers aren’t easy to find these days.

Omg! I just met a little boy with SMA a few weeks ago at a football game who had one of their wheelchairs! It was awesome…. so sleek. So cool to read their story now.

That’s a really good point. I completely forgot about it, actually. No, I haven’t heard anything about it. Sounds safe……

Yes, my parents had a similar experience with my diagnosis. Not much was known about SMA back then. It’s hard to believe that diagnosing only became a much more straightforward process in the last decade or so. And now with treatments, early diagnosing is even more crucial.

So cool. Country music is awesome. I love how there’s a storyteller element to the genre. For anyone that wants to listen and support KandK, you can do so here.

I’d say my confidence, as well as my relationship, with myself ebbs and flows. I’m trying to get better about it. I put a lot of pressure on myself because I have a lot of goals and plans, but when SMA gets in the way, I beat myself up sometimes. Some days are better than others, and I’m definitely learning and growing as I get older.

I love how they took their difficult news and found something to be grateful for, instead. When I’m having a bad day, I often make a gratitude list in my head to try to reframe my thoughts. My gratitude list would be too long to type, but I echo their sentiments. 🙂 I’d definitely add the SMA community to the list, too!