DeAnn R

Hey Blake! I have attempted NaNoWriMo before. It’s a great challenge and a really cool community. Brie here does it as well.

What kind of stories do you write? I mostly write comic scripts.

I’ve never been a big fan of any of the collection of “Pride” months we seem to be overwhelming our calendars with. I feel like it serves as a way to separate the people of our country by pointing out the differences that others do not care to celebrate. The people who usually participate in rallies and awareness events are, for the most part,…[Read more]

Alyssa, thanks so much for posting this! It’s a spark of hope that’s long overdue.

I believe they make a version for Mac, but I’m not 100% sure. The physical version is usually a little more expensive than the downloaded one. I got the downloaded version and had no problem adding it to a different computer when my old one died. They keep track at the company of your purchase, and you can even go online to see the date. I had a…[Read more]

I used Dragon NaturallySpeaking for 20 years before I had to get on a vent 24/7 last year. It is the absolute best when it comes to speech recognition. It has no equal in its ability to do everything a regular mouse can do on top of being able to discern what you’re saying. One thing I would recommend with any of this type of software is to invest…[Read more]

I’ll be at the adult social tonight! You can still register here: https://annualsmaconference.configio.com/pd/13/?code=4g1Htmi1FX

Has anybody looked at any of the info on all the things happening to people who have had the “vaccines?” My husband refuses to get it. I will NOT be getting any boosters!

I’ve also not had my usual bouts with pneumonia since starting Evrysdi in December 2020. I feel like I have more energy and less issues with allergies and colds. Unfortunately, I found out today that my insurance has denied my continued use on my recert. My Dr is filing an appeal, so we’ll see what happens.

I use Zyrtec after trying Claritin. I think it’s all a personal preference and whatever works for you best.

Someone has been brushing my teeth for me for the last 27 yrs. It was first my mom and now my husband. We use an Oral B electric toothbrush, the one with the round head b/c I feel like it fits in my mouth. There are several kinds and shapes of electric toothbrushes out there, and they’re not expensive. Find one you like for somebody to help you.…[Read more]

My pain got to the point of no alternatives to pills was working, and marijuana was only for certain problems, SMA was not one. Unfortunately, I had to go to meds, and I have been comfortable ever since 2019 with no sleepy/sick/out-of-it side effects. I used to think I was a bad person for resorting to meds, especially with our country’s opioid…[Read more]

DaLiza, congrats! Fantastic news.

I can imagine it is overwhelming, but as stated above, there are plenty of successful parents with SMA and other disabilities. As DeAnn noted, I highly recommend her interview with Jennifer and Jennifer’s YouTube channel. I’ve met many other parents with SMA as well at conferences. There are definitely r…[Read more]

I developed severe hip pain around age 45-ish. I went to the MDA neurologist b/c I wasn’t sure if it was SMA related or just from sitting in a wheelchair for the last 40+ years. He told me that b/c I was part of a set of SMAers that was beginning to live longer for the first time, it was difficult to tell which caused the problem, the sitting or…[Read more]

I definitely think the brain is constructed in a way to keep us from reliving trauma. It’s how the brain protects the body from constantly going thru that heightened state over and over. As to why you can’t remember the good times, I don’t know. Collateral damage, maybe?

I can still remember my good childhood events and even some bad ones.…[Read more]

I hadn’t ever heard of Notion before you mentioned it Alyssa, but I’m going to check it out now!

My takeaway: Stop wishing and wasting time & energy on things you either can’t have or that won’t be the end all, be all after you get them. Take a minute to grieve what you’ve lost, then learn a new way to a path that can be equally rewarding with the abilities you have.

As SMAers, we’ve all learned to use “workarounds” to get things we can’t…[Read more]

I use ginger if the problem is nausea.