Everyday LifeFor our firstborn son, the first five years of his life were pretty much routine. We were oblivious to any health problems...reactionscomments
Introduction to MDA and My Son's Diagnosis JourneyAfter waiting months for the results of all those tests completed at St. Christopher’s Hospital, we went back to see the neurologist...reactions1comment
Learning From a Fall: Safety Tips for Wheelchair UsersThe other day, I fell out of my wheelchair. It’s not the first time this has happened, but it was definitely the...reactionscomments
Parking Lot Mishaps: The Wheelchair EditionWe've all witnessed that mom clutching her child's hand like it's a lifeline as they navigate a chaotic parking lot. This could...reactions2comments
Managing Fear in SMAOne of the topics I see covered a lot by parents of young people with SMA is the fear that they are experiencing...reactions3comments
Fears of the BiPAPLiving with spinal muscular atrophy, you'll often find yourself consulting a pulmonologist from a young age. Over the years, there have been...reactions1comment
My Experience With Massage Therapy and SMAI wrote an article talking about the benefits I have been experiencing from stretching. I also had a long run at receiving...reactions2comments
Taking Care of Myself as Mike’s Full-Time CaregiverIn March 2020 I became Mike’s full-time caregiver. This was a big decision and one we discussed for a long time. It...reactionscomments
Transitioning to My First Electric WheelchairI’ve been using my new Permobil wheelchair for just about a month now. The last few months that I was using my...reactions2comments
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...reactionscomments
Feeling Emotional About Things People SayI gave up whenever someone asked, “Oh, what is she doing now?" (She as in me.) And your family answered it with...reactions3comments
Patronizing CommentsI was on a Zoom call with other people who were disabled. One of the moderators who wasn’t disabled made a comment...reactions2comments
The Silent Battle and ResilienceIt’s a bittersweet reality when the person who has always been your guiding light becomes the one needing care themselves. In August...reactions1comment
Becoming My Boyfriend’s Full Time SMA Caretaker I am the oldest of 5. I had one sister and 3 brothers. Growing up in my family I was always by...reactionscomments
How I Find Worth in CaretakingTaking care of someone can be hard and trying. Especially when it is a 24/7 gig. There are days I wish I...reactionscomments
Challenges of Being Your Partner's Full-time CaregiverCaring for a loved one with a disability like spinal muscular atrophy can be both a rewarding and challenging experience. One of...reactions1comment
Maintaining Relationships with Family and FriendsCaretaking for a loved one is a full-time gig. I purposely used the word gig instead of job. I really love what I...reactions1comment
Why am I Always the Party Pooper?I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and...reactionscomments
Thanksgiving & Difficulty SwallowingSo, the fourth Thursday of every November in the US is Thanksgiving. For our international friends, it is a national holiday centered...reactions1comment
Tips and Tricks for Day TripsMy friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many...reactionscomments
