The Freedom to SwimSometimes 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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments1 comments
Office of Vocational Rehabilitation (OVR)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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Talking With Children Who Have SMA About Their BodyI 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... By Samantha Przybylski2 min readBookmark for laterReactions 0 reactions Comments6 comments
Frustrations Around Able-Bodied People Using the Accessible BathroomsIf 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... By Mike Noon3 min readBookmark for laterReactions 0 reactions Comments0 comments
Thanksgiving & Difficulty SwallowingSo, 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... By Lewis Beatty3 min readBookmark for laterReactions 0 reactions Comments1 comments
Fashion Within the Disability WorldThis 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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
Tips for Talking to Your Doctor About SMAMost 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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Giving Up DrivingI 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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Preparing For the Working World 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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
How To Be a Good FriendRecently 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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments0 comments
Healthy Holiday BoundariesWe 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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
SMA Mama – Preconception, Pregnancy, and PostpartumI 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... By Samantha Przybylski3 min readBookmark for laterReactions 0 reactions Comments0 comments
Traveling With SMA: What to ConsiderTraveling 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... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Where Does This Leave Siblings?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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
Getting Wheelchair Accessible Concert TicketsIf 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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Importance of StretchingBeginning 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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
My Journey to Becoming A Mom in a Wheelchair: Part 1Finding the right doctor. As a little 4-year-old girl, I used to pretend I was pregnant. I would stuff a pillow up my shirt, tell my mom to place her... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
A Scary ICU ExperienceYears ago, an event caused us PTSD. Jessie, 16 years old, was in the hospital’s intensive care with severe respiratory difficulties for 2 months. However, the hospital wanted her to... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
Frequently Asked Questions (FAQs) About Spinal Muscular AtrophyWhether you are living with spinal muscular atrophy (SMA) or a caregiver for someone with SMA, here is a guide to the basics of SMA. Spinal muscular atrophy (SMA) is... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Building a Wheelchair-Accessible HomeAfter years of searching, I finally found a home builder for a new development that was more than willing to accommodate my accessibility needs and redesign their floor plans. So... By Chaz Hayden3 min readBookmark for laterReactions 0 reactions Comments8 comments