Activity

Hey Daniela, welcome! I’m 28, type 2, and I work remotely for this site’s parent company. I’m also a writer and podcaster. Great to have you!

Welcome! Gosh, you must be talented to be going for your graduate degree. In accounting no less. Like Alyssa, I barely squeaked through my college accounting classes. Is there a specific area of interest?

I’m another moderator here. Feel free to ask any questions and browse through the topics. It’s great to have you here.

I was hoping someone would reply first with a more positive experience. Possibly you can learn from the missteps of my case. Because I have a feeding tube we couldn’t do it laparoscopically. It made the surgery more complicated and extends recovery time. While being put under I aspirated causing aspirations pneumonia. During the surgery my hip…[Read more]

Hi Daniela, welcome! I am 53 years old with type 2 SMA. I’m a novelist and songwriter here in city of Los Angeles CA. So glad to meet you and good to see you here 🙂

 in Texas, originally from Mexico

How did you move? I always thought it would be extremely difficult to get medical insurance for a new citizen with an already existing severe disability?

I am from Europe, software developer.

This is great advice, Blake. I like the idea of blocking out time to do health-related things. I feel like that would be a great strategy for me. Thanks man. I appreciate it!

Hey Daniela! As I wrote to you earlier, I’m a moderator here. 🙂 I have SMA type 1 and live in Rhode Island. I’m 31 years old with a marketing degree and currently work for a fashion startup as their chief creative officer. We make adaptive lingerie for women with disabilities!

Kudos on getting your graduate degree! I barely passed accounting in…[Read more]

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. 🤓

Our situations are a bit different, but I sometimes struggle with the idea that nothing is private in my life. I live with my parents so they basically know mostly everything which is fine. We have a good relationship with one another and there’s good communication. I try to stay a bit more private with my PCAs but sometimes that’s tough when the…[Read more]

Once upon a time I had an NG tube for about a week or two before I got my PEG tube. At the time I was told the NG wasn’t a good long term solution because it can aggravate your nasal cavity and cause throat irrigation. I found that to be true for me after a few days. I’ve heard other folks have them long term, no issue so I don’t know. For me…[Read more]

Thank you for sharing this, DeAnn! We bought a ton right before Omicron cases skyrocketed and were using them to test nurses and PCAs that came into the house. I know they’re not 100% effective, but it gave some peace of mind. Just ordered my 4 yesterday.