Hi Deann, yes, it is a total bachelor pad. It’s separate from my mom’s space, but still in the same house as my mom if that makes sense.

When I was a child, my family and I lived in a small apartment. However, when I was 13, we had our own house built. The garage was turned into my side of the house with my own bedroom, bathroom, kitchen and medical supply room. All of these rooms are separate from my mom’s side of the house. I talk a little more about my living space, with…

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Thank you Alyssa! Feeling great today, so hopefully a period of good health sticks around for the summer, and even longer. I hope that for you as well!😃

I’ve recovered from COVID-19 physically. Recovering mentally though, I have a ways to go because of everything I went through. It was a nightmare. You can read about my experience here: https://smanewstoday.com/columns/navigating-my-experience-with-covid-19-hope-determination/

Hi Deann,

Did you ever find out anything more about if you were going to meet with your legislator? I’ve met with dozens and dozens of legislators over the past 20+ years, so I know a thing or two about it.

What everybody is saying here is totally correct, it’s important to paint a picture of your situation. If you can, you could give him a…

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Rochelle, you have a really great idea. We should get together and brainstorm some time.

I mean this sincerely because I have a connection in DC. My goal is to testify before congress by 2025 about how Medicaid reimbursements are way too low in home care. I’ve literally gone through 1,000 nurses in my 37 years of home care. I probably wouldn’t…

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If my wheelchair repair company told my mom and I it would take 2-4 weeks to order something, we would demand a work around until then. They’ve tried to make us swallow the answer that we have to wait quite a few times in the past, but we just wouldn’t accept it.

There’s usually more than one way to fix a problem quickly, but in my…

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My dad left when I was a kid, so he’s not involved in my care at all. Unfortunately, my mom has to help with my care a whole lot, and she shouldn’t have to at her age. Plus, she gets up at 4:30am every day to work at the hospital, so she is swamped.

The problem is, we don’t have enough nurses to cover the hours we’ve been given by…

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My nursing agency has traditionally done all of the recruiting for most of my life. However, in recent years, the nursing shortage has gotten so bad that I haven’t had much choice but to help my agency look. I post ads online. In my latest column, I wrote about how I found 2 nurses 2 years ago myself, but unfortunately I haven’t been able to…

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Sorry, don’t know if my second paragraph came out since I spaced too much. How I meant to end my last post was:

It’s very hurtful when nurses tell me one thing, and tell the agency something different. Sometimes I don’t know what’s wrong with some people. Hopefully it will get better soon, because I’ve had plenty of good nurses in the past,…

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People back out on me all the time. I interview sometimes several nurses a month. Over 90% of the time it’s the same story. They will tell me that the driving distance to my house is absolutely not too far. Then they call my nursing agency the next day, and say it is too far and won’t come back. Or they will tell me that my care is absolutely…

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Sometimes to an outsider, sibling relationships can be hard to understand. It’s no different when a sibling has SMA. At times, when my sister and I were growing up, people sometimes thought that we were actually verbally fighting. In reality, we were just teasing each other in a lighthearted way. We both knew it wasn’t serious.

Despite the…

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Susana, I loved how you put that! I had someone basically get in my way yesterday. He totally doesn’t know who he’s dealing with!

Hi Micaela,

This is totally a common problem, and something I deal with frequently. Whenever my home care nurses start calling  a lot out and my mom has to cover their shifts, along with working full time at the hospital, she understandably gets exhausted. She also gets very frustrated with them. This in turn makes me frustrated to see my… Read more

DeAnn, yes, compared to everything I had been through, recovery from surgery was a piece of cake. I was well enough to be discharged from the hospital after just one night.

However, since I had a rebound of my respiratory infection after the surgery it took me about a week to ween off the ventilator at home. Now I’m back to just needing… Read more

Alyssa, I’m feeling great both respiratory and kidney wise now! Thanks for asking:)

I’m glad that what I said helped you. I love it whenever people say what I need to hear. It makes a huge difference.

Alyssa, I feel you. I was basically feeling the same way two weeks ago when I had my surgery and the weeks leading up to it. I was in so much pain from kidney stones along with a bad respiratory infection. My nurses at home had to work so hard to get my lungs clear enough so that I could actually go to the hospital and have my kidney… Read more

I share your frustrations DeAnn. I too have a nurse who makes it so obvious that she would rather be doing something else other than nursing.

The good thing is that starting Jan. 1st, my state is raising the pay for Private Duty Nurses (PDN) by over $5. Hundreds of people, including myself, had to fight tooth and nail to get… Read more

I fullhearted agree with you DeAnn that this is a halfhearted attempt to appease people. Maybe even quarterhearted. What good is a charging station if you want to take apart my chair if I try to board a plane. If you take it apart, the technology that controls my chair is so custom made just for me, that you’ll never get it back together right again.

Deann, how did you manage to get vaccinated? It’s ridiculous that in my state I’m in group 4 when I have a trach and vent.

Also, if you’re into Sci Fi, Alien Worlds is a really interesting 4-part documentary on Netflix. It’s new.

Hi Alyssa,

The Crown on Netflix is pretty good, although the 4th season is kind of depressing. The first two seasons of the show are very well done though. The third season is alright.

I’ve heard a lot of people say that The Queen’s Gambit on Netflix is excellent. I haven’t watched it yet, but probably plan to start this weekend.

Sorry for… Read more

I wouldn’t know about non-medical caregivers, the ones who aren’t nurses, but if you are trying to find nurses (RNs and LPNs), its never been this bad. I’ve received nurses in my home for 34 years and I’ve certainly seen home care go through ups and downs over the years, but not like this. Before Covid, I would maybe have to interview 10 or… Read more

That was a great column Alyssa! I can definitely relate to how bleak things can get when you get sick. I had the flu too. It was last year in 2019 and it basically took me at least 3 and a half months to recover.

As depressed as I have been in 2020, I have had one Silver Lining that makes me forget all the bad stuff when I think about. While… Read more

Although I was never able to hold a book, I had these book holders in school that would attach to my chair. They would work fine for a while until they fell and broke, which seemed to happen a lot for various reasons. I was in school more than a decade ago so there are probably better book holders now.

There are plenty of bad things about… Read more

Hi Kevin,

I see you’re a prolific writer and work for Bioware. Do you mind if I send you a private message on here soon about how to get a job writing? Never had much luck getting an actual paying job, which is pretty discouraging.

Hi Alyssa!,

I definitely won’t be a stranger around here. Chatting with people gets my mind off things, LOL.

I think we crossed paths before online before, a few years ago when I was writing an article. It’s nice to meet you again!

So you have PDN too? How have the quality of the nurses been for you? Can I ask you a couple questions about… Read more

Hi Kevin!,

That was a well balanced and realistic write-up you did on 2020. Like you and everybody else, I had to cancel all my plans and trips that I was dearly looking forward to. I think people with SMA enjoy our trips more than the average person because we don’t take it for granted.

Also, when it rains it pours. On top of everything… Read more

Hi DeAnn!,

Nice to meet you online and thanks for your encouragement on advocacy!

As far as Sci fi and comics, I jump around a lot, but right now I really like reading the old Alita: Battle Angel manga books from the 90s.

What do you like to do?

Hi Everybody!

I can’t believe I hadn’t heard of SMA News Today Forums until a couple months ago. That shows how much I have to learn about the SMA community and I’m excited to learn!

My name is Ari and I have SMA Type I. Although I’ve kind of been a solo man act for most of my life, that doesn’t mean I haven’t done a lot. I’m a college grad… Read more