Modifying Your Home for More Independence...Having an accessible home can help with some of the challenges of living with SMA. It can help with living more independently...reactionscomments
Now Closed: SpinalMuscularAtrophy.net Giveaway...The SpinalMuscularAtrophy.net Giveaway is now closed. Thank you for your interest! We're excited to announce a special giveaway for our community! We...reactionscomments
We Flow with the Changes in Our Child...Yes, your role as a parent changes remarkably as your child grows from that little toddler into school age and then again...reactionscomments
The Joy of the MDA Summer Camp...I think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week...reactionscomments
Remembering the First Days...As you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day...reactions1comment
The Journey Begins...I am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved...reactionscomments
Everyday Life...For 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 Journey...After 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 Users...The 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 Edition...We'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
What is Spinal Muscular Atrophy (SMA)?...Spinal muscular atrophy (SMA) is a genetic disorder where muscles become weak and waste away. It happens when spinal cord nerve cells...
Managing Fear in SMA...One 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 BiPAP...Living 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 SMA...I 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 Caregiver...In 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 Wheelchair...I’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 Stretching...Beginning 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 Say...I gave up whenever someone asked, “Oh, what is she doing now?" (She as in me.) And your family answered it with...reactions3comments
Patronizing Comments...I 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 Resilience...It’s a bittersweet reality when the person who has always been your guiding light becomes the one needing care themselves. In August...reactions1comment
