Ari Anderson

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 mom…[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 my…[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 stones…[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 this…[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 the…[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 11…[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 so…[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 the…[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 that…[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 going…[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?