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...One night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had SMA, and her deteriorating condition. Unexpectedly, all of...

...When I first began to read blogs and see posts about others doing their “self-care,” I remember my first thought: “Well I can’t do it “myself,” so it feels more...

...Growing up, I never felt embarrassed or ashamed of the extensive medical equipment that was on display in my bedroom. A BiPAP, suction machine, air concentrator, cough assist, pulse-ox monitor...

...Suzanne and I met over 6 years ago. We both had an attraction to each other. Our friendship grew into a relationship. As we spent more time with each other...

...Sometimes I just want to stand up and fling my arms around or jump or spin really fast until I’m dizzy and fall on the floor. It’s the feeling when...

...I mentioned this program briefly before. This was extremely helpful to our situation when we first were introduced to it in 1995. The goal of this program was to assist...

...I remember being a child and having very bold discussions with health care providers regarding my weight. Their focus was a clinical view of my body. Remember you cannot gain...

...If you’re following along, this is Part 4 of my story. The first three articles are linked below: The event that prompted this long story was that I had to...

...So, the fourth Thursday of every November in the US is Thanksgiving. For our international friends, it is a national holiday centered around giving thanks for any blessings experienced during...

...This is a topic that I think the world is expanding upon: fashion within the disability world. For a long time, I think there was an idea out there that...

...Most people living with spinal muscular atrophy (SMA) need care from multiple doctors. Regular doctor’s visits help you or your child manage breathing, nutrition, and movement. This can help improve...

...I touched on this topic a little in my article “How Expensive Is That Minivan.” I drove without any driving adaptations for 24 years. Driving gave me freedom, an opportunity to...

...With college behind him, it was now time for Mike to apply for that first job in the business world. I know that if you are a young adult with...

...Recently I’ve read a few posts regarding being disabled and having friends. One was in a Muscular Dystrophy Facebook group where someone shared that their good friend is getting married...

...We all just survived a pandemic. That is no small feat! As the holidays come around, we are going to be surrounded by greater volumes of people with differing opinions...

...I have spinal muscular atrophy (SMA) type 3. I’m unable to stand, walk, or transfer. I use a manual wheelchair and power wheelchair and require assistance from others to assist...

...Traveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA) and their families can still travel like everyone...

...That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is that we all try our best to juggle...

...If you’ve ever lost out on accessible/ADA tickets to your favorite band or musician, today is your lucky day because I am sharing my tricks for always locking down a...

...Beginning in my early 30’s, SMA started to take away a lot of my strength. As a result, I began sitting more and more. I mostly used my scooter up...