DeAnn R

I’m reading, “The War for Gloria,” about a woman who has just been diagnosed with ALS. I usually stay away from books about disabilities because after all, I already live that life. That’s just my preference, but this fictional story is told from the perspective of Gloria’s 16 yr old son who she raised on her own. He struggles with trying to help…[Read more]

I just poor it in the syringe and it drains down. It’s just like your gravity only much faster. If you’re worried about speed, I would suggest doing it the way Yvette does with the syringe. She uses the plunger to push it in. That way you have total control over speed and amount. It’s also easier to keep from getting clogged. My syringe for bolus…[Read more]

I am, thank goodness, finished with all of that! I actually started going thru menopause sometime in my 40s and by 52, no more periods. When I was of such an age, I tried the depo shot that had just come out. Unfortunately, I was in that very small percentage who continued to still have a period. In fact, I got to have mine EVERYDAY for a month…[Read more]

Okay, I would be that other community member Yvette was referring too. I’ve been taking RFB now since around 2016 when my stomach just suddenly stopped tolerating the usually nutritionist recommended formula. Let me clarify. Most traditionally trained nutritionists don’t have a clue about the formula needs of someone with SMA. I started taking RFB…[Read more]

Yes, it’s an actual thing. Last week Biden gave a speech with his plan on mandates. One you might find particularly interesting is that any facility or agency that receives funds from Medicare and/or Medicaid is required to require their employees who take care of patients to not only wear masks but also get vaccinated. There are nurses all over…[Read more]

DeAnn, I feel like it’s always in your best interest to complete the forms b/c A. it looks good that you’re trying to participate in helping the Claims Rep (CR) to do your info (despite popular opinion, CRs do have hearts and generally remember their clients, especially if they stick out for either good or bad reasons), B. the info in the letter…[Read more]

The main thing s you have to worry about are Substantial Gainful Activity (SGA) and Trial Work Period (TWP). Let’s start with Twp.

“During a trial work period, a beneficiary receiving Social Security disability benefits may test his or her ability to work and still be considered disabled. We do not consider services performed during the trial…[Read more]

Nice!

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.