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...reactions1comment
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...reactions1comment
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...reactionscomments
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...reactionscomments
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...reactions1comment
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactions1comment
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactions9comments
Talking to Your Child About SMAWhen your child has a long-term illness like spinal muscular atrophy (SMA), it is normal for them to have questions. They may want to know what causes SMA and how...reactionscomments
A Letter to My Parents: WE are Living with SMAParenting isn’t a job for the faint of heart. I live in a world full of adults living with disabilities, and I have the great privilege of seeing the amazing...reactions4comments
Mikes New Trial For The Family - A Cancer DiagnosisIt’s now the start of a new college school year. As always, we all load up the car and take Mike back and get his room all set up for...reactionscomments
Designing New Locker RoomsThis is part 3 of an ongoing story. If you haven’t been following along you might want to start with Part 1 and Part 2 before continuing on here. After...reactionscomments