Honest Look at a Parent’s HeartbreakThe emotions that each parent truly lives with from that first day our child is given a diagnosis of a neuromuscular disease. In reality, each parent feels that same initial... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 could get a break. As of right now... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments0 comments
Large Medical Team Helps a Child With SMAWhen our daughter, Jessie was born we were overjoyed. We were unaware of what was in store for my daughter and our family. Jessie was not meeting her age-related milestones... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
My First Wheelchair Seating ClinicIn previous articles, I’ve written about perception. How we are perceived is a big part of ourselves. When I went off to college, I knew that I wouldn’t be able... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Becoming Financially IndependentThe other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job. I wanted to make sure that I would... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments2 comments
Wheelchair Recommendation and Favorite FeaturesAs someone with spinal muscular atrophy, I understand the importance of selecting the correct wheelchair. Not only is it a huge financial commitment but is a piece of our body... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
Personal HeroesWe asked our Patient Leaders to tell us about the person who has helped them the most as they've navigated living with SMA. Here are their responses: Michaela: My sister... By Editorial Team4 min readBookmark for laterReactions 0 reactions Comments0 comments
Body PerceptionOne of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back in 2017 I was lucky to be invited... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Escaping the Cold WintersMike and I are thinking about embarking on another road trip soon. These Pennsylvania winters are so hard on Mike in his condition with spinal muscular atrophy. When it’s cold... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments0 comments
If You Fall, I’m Going Down With YouMy sweet child, she’s fearless. She’s put me at max speed. She’s "Daddy look at me!" She’s full of constant laughter and joy. She's trapped in a body that won't... By Erin Courteau4 min readBookmark for laterReactions 0 reactions Comments0 comments
5 Tips for Dating with a DisabilityThe dating landscape with social media and dating apps is not always an ideal way to meet others when you have a disability like spinal muscular atrophy. These dating apps... By Samantha Przybylski3 min readBookmark for laterReactions 0 reactions Comments0 comments
Empty Nest AgainAs any typical parent will experience the day when your last child leaves the childhood home. At this point we are called “empty nesters”. This is met with different emotions. ... By Maryalice Noon3 min readBookmark for laterReactions 0 reactions Comments0 comments
Disability Costs Too MuchI often get told how I should be grateful because the government pays for my spinal muscular atrophy treatments, or my durable medical equipment and I shouldn’t want for more... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments0 comments
Jessie's Bucket List - What is on Yours?Everyone has a bucket list. A bucket list is something you want to do or experience before you die. In 1989, Jessie had a bucket list also. When she was... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments0 comments
Letting Go of a PCALike any other job in this world, being someone’s personal care assistant just isn’t for everyone. But unlike every other job, this position is very close to home. Both literally... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
5 Disability Tips for Attending Large Venue EventsWho doesn't like going to a concert, performance, or sporting event? The problem is, it's not always easy to attend events at large events while living with a disability, such... By Samantha Przybylski3 min readBookmark for laterReactions 0 reactions Comments0 comments
How Do You Handle Cold Weather?We asked our Patient Leaders here at SpinalMuscularAtrophy.net, "How do you handle colder weather?" Does cold weather impact their SMA symptoms? Do they have go-to workarounds to avoid going out?... By Editorial Team5 min readBookmark for laterReactions 0 reactions Comments0 comments
Hurt Back and Guilty ConsciousI’ve talked about the guilt I deal with in regards to the amount of work people need to exert in order to assist me throughout the day because of my... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Just a Girl in the Men's RestroomI can honestly say some of my funnier moments coping with spinal muscular atrophy have come from having to use public restrooms. However, it wasn’t until I got married that... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
Making Sacrifices or Accommodating Each OtherRelationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate and co-worker to name a few. When... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments0 comments