Blake Watson

I also having a similar problem (and I suspect many of us do). I don’t know that I have any good advice but this is how I deal with it. It’s a sort of double-strategy approach:

1. Time block “health” time. I do this in my head mostly but you could also use a calendar app. Basically, I know what times I’m going to need to do health stuff and I deal…

[Read more]

Hi Daniela, welcome to the forum! I’m 36, also SMA type 2, from Mississippi.

I came very close pursuing accounting myself but ended up in business information systems because I’m a computer nerd. 🤓

I think about this sometimes. I thought I was the only one who did lol. Sometimes I think about what assumptions people make about me when I am out in public. They probably wouldn’t guess that I am a software engineer. I mean that’s totally fine; I wouldn’t expect them to. I can’t help but wonder what assumptions they make about me, though. To be…[Read more]

I’ve been watching Succession on HBO. Best I can describe it is like Game of Thrones but it’s corporate America.

As far as more wholesome options, on my list are season 3 of Lost In Space (Netflix) and an anime movie, Castle In The Sky (HBO).

I’ve kind of decided I’m giving to charity rather than getting gifts for folks and I’m trying to figure out the best way to let them know that. 😅

Just don’t feel like doing the whole shopping thing, especially since the mail system, stores, supply chains are already burdened with post-covid issues.

I thought I might try mailing some perso…[Read more]

I totally feel you. I had already started feeling a bit isolated right before the pandemic—and certainly after. Sometimes I feel like my whole life is on the computer and internet. I refuse to feel guilty about “screen time” though because using a computer is when I feel the most able, creative, and productive. In fact, I lean into it. For e…[Read more]

Yeah, as we’re all painfully aware, losing an ability sucks. Good on you guys for figuring it out!

I feel like I live with one eye on the future, always evaluating my current abilities against what I estimate to be my trajectory of function loss, for lack of a better phrase. I already have thoughts about how I will continue to use a computer and…[Read more]

This doesn’t fit the requirements Alyssa provided (ie, portable hand warmers) but just in case it helps anyone, here’s a tiny desktop space heater I use. I angle so that it points directly at my hands and I have it plugged into a smart outlet so that I can turn it on and off from my computer/Siri.

https://www.amazon.com/gp/product/B00I4UVGHO

Having driven rear-wheel, mid-wheel, and front-wheel I’ve settled on mid-wheel as the optimal configuration. I don’t have offroad requirements so I can’t speak to that. But for safety, stability, and navigational prowess (I’m making up terms here lol) I think mid-wheel outperforms the other configurations by a longshot.

The folks who supplied the chair may be able to change that with a programmer. I want to say you can’t do it yourself, which sucks.

I love the openness and self-awareness of your columns. They cover the spectrum of negative feelings, insecurities, and steadfast optimism—qualities I think most of us are familiar with. I think they come together to form an accurate picture of living with SMA—it sucks, it’s scary, it’s frustrating, but to get through it we have to face it wit…[Read more]

Yeah, I feel you on this. That said, when it comes to my PCAs, I remind myself that they are being paid. I feel less of a need to avoid inconveniencing them because of that. It’s their job to make my life easier. It is definitely okay for them to learn to work around your life and needs.

My rep told me I didn’t need to send mine in. 😬

I think you have a perfect opportunity to use my favorite character, the ampersand. You might have seen the Beatles shirts styled like:

John&
Paul&
Ringo&
George.

You could just string them around the bowl: Skip & Gadget & Molly

Just look for a font with a cool ampersand. 🙂

Yeah, “SMA overload” is a good term for that phenomenon. I tend to be…[Read more]

Yeah in the latest podcast when you were talking about (for lack of a better term) getting your mind and body on the same page, I could tell you were dealing with the same problems I (we all?) have. There’s so much we want to do but our bodies don’t always have the energy or robustness to get it done. We have to get into a manageable rhy…[Read more]

Every day, I watch from the sidelines as people go about their lives. Meanwhile, I surf the internet. I write my book. I schedule appointments and wonder, idly, if my headaches are symptomatic of something else.

I totally feel this. I’m working full-time from home (I’m supposed to be working right now lol) but I still feel like this often. I just…[Read more]

I really loved this episode! Hearing everyone’s stories and perspectives was helpful and encouraging.

I hated to hear Michael’s story about asking for a pay cut. It sucks that we’d ever have to do that and it’s antithetical to the stated goals of the programs we rely on—an indictment of the system for sure.

I covered much of my story when I was [Read more]

I just want to make it clear that I’m not trying to sell anything to you guys… no one here needs to pay me for anything. If my extension helps you I’ll let anyone with SMA have Premium for free. Just let me know.

Ok, this is a bit of self-promotion but Brianna did mention extensions so I’ll let the moderators decide. 🙂

I created a browser extension called A Fine Start. It’s a new tab page for web browsers. It is designed to be a minimal presentation of your favorite links, which can be sorted into groups and columns. There’s a Chrome extension (whic…[Read more]