A Difficult Decision About Scoliosis Surgery For Our DaughterIn the 1980s, my daughter who had spinal muscular atrophy (SMA) was growing bigger and taller. We noticed that she was having difficulty sitting upright by herself in her wheelchair...reactionscomments
Sibling LoveI have talked about Mike’s good friends who were always including him with all their adventures. Well, the best friend of all in his younger years was his brother Dan...reactionscomments
Emotional Effects of a Spinal FusionI know many things have advanced in the medical field especially when it comes to spinal fusions. I had mine done at the age of 11 and I know many...reactionscomments
Preparing For TakeoffOver the course of the last 5 years, I have had the opportunity to fly around the country. It had been some time since I had flown. I was going...reactionscomments
Transitioning to Adult CareSomething that’s rarely talked about in the SMA community is the process of transition from pediatric to adult care. It’s hard enough to find a good team of doctors who...reactionscomments
Preparing for Pregnancy When You Have SMA - Questions for You, Your Partner, and Your DoctorDeciding to become pregnant as a female with SMA can be a very big decision. In my case, I knew I had always wanted to be a mom but I...reactionscomments
Removing Wisdom Teeth While Dealing with Respiratory IssuesAround the time I got my g-tube, I also realized that I was having problems with my jaw and teeth. After I had braces as a teenager, I never had...reactions1comment
Bullying on Social MediaSocial media has opened up a wealth of connections and information to people all over the world and is an important access tool for people with disabilities who may be...reactionscomments
The Administrative Bent of People with SMAWhy we make great leaders, parents, and executives: If you were born in the last 40 years, there’s a good chance that you have taken some form of personality or...reactionscomments
Rare Disease DayThe last day of February is Rare Disease Day! To celebrate and acknowledge this important day in the rare disease community, we asked our advocates: What does Rare Disease Day...reactionscomments
The Expense of Maintaining a Power ChairI know I have mentioned this before but it’s worth repeating. Having a disability is expensive. It’s one of the aspects of the disability that is probably not thought about...reactions1comment
The Misery of Accessible House HuntingSearching for a dream home or apartment is a daunting task and even more so for a person with a disability. There aren’t any laws that mandate accessible requirements within...reactions1comment
Coming Up With A Treatment PlanRecently this topic was suggested to me and to be honest, I have sat with my feelings on this for quite some time. If you are reading this as a...reactions2comments
My COVID ExperienceYou’ve heard the saying “the fear of the unknown.” I would not consider myself a fearFULL or pessimistic person however when COVID became the reality of the world, I had...reactionscomments
Stop Surviving and Start LivingRecently I just got over my second respiratory infection in two months. Thankfully I hadn’t been sick or needed an antibiotic in over two years. Every time I get sick...reactions2comments
Adapting MakeupMakeup for me has always been something I give myself as a gift of self-care. I enjoy doing my makeup every day and enjoy the feeling I get when looking in...reactionscomments
SMA and Snow Days I don’t think I am alone when I say that winter is just not our favorite season. I tend to run cold (which I know a lot of other people...reactionscomments
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. As an adult with SMA, that fear is...reactions1comment
Trying to Experience an Inaccessible WorldI have so many stories to tell regarding this topic. I have talked about how lucky I consider myself in previous articles. I was relatively self-dependent up until my early...reactions3comments
Rare In America: What's That?The "In America survey" is now closed. A diagnosis of spinal muscular atrophy (SMA) can be isolating, bringing many questions to the forefront. To learn more about the challenges of...reactionscomments
