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
Finding Humor in the SMA-PCA BondLiving with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal...reactions1comment
Diffusing Awkwardness With HumorWhen living with spinal muscular atrophy, there are moments when you're getting some help dressing or with personal care, and something hilariously...reactionscomments
Navigating My Treatment Journey as an Adult with SMA – 5 StepsMy journey to getting treatment was not a conventional one. I had not been seen for my SMA in over 13 years...reactions1comment
Losing Weight With SMAWhen people think about losing weight, they often envision crafting an exercise routine tailored to their body's needs — a regimen that...reactions2comments
Managing EnergyI often struggle with low energy, year-round. I'd like to share some things that have helped me and hopefully will help you...reactions6comments
