Patient LiftsHaving the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be...reactionscomments
Traveling With SMA: What to ConsiderTraveling is a great way to relax, learn about other cultures, and bond with your family. People with spinal muscular atrophy (SMA)...reactionscomments
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...reactions1comment
Body PerceptionOne of my missions is giving teenagers the confidence that life isn’t all doom and gloom when dealing with a disability. Back...reactions1comment
Van-Accessible ParkingMike usually doesn’t like to use disabled parking spaces. There are different types of disabled parking spaces: regular and van-accessible. I’ve learned...reactions3comments
Boredom BustersI can't tell you how many times I've Googled "Things to do in the winter when bored," or "Boredom busters" just to...reactions5comments
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...reactionscomments
Becoming Financially IndependentThe other day, I visited the Supplemental Security Income (SSI) office. I had to visit because I now have my first job...reactions2comments
Rare Disease DayThe last day of February is Rare Disease Day! To celebrate and acknowledge this important day in the rare disease community, we...reactionscomments
An Overview of Disability Rights LawsThe US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain...reactionscomments
Cold and Flu SeasonThe time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is...reactions1comment
Disability BenefitsConditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits...reactionscomments
Adjusting to Life’s TransitionsLife consists of transitions both large and small. One could argue that transitions are good and bad. I would argue that life...reactionscomments
What Is the Social Health Network?Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health...reactionscomments
Working on Mental ToughnessI wrote an article a while back, “Staying Mentally Healthy.” In that article, I attributed a lot of my mental toughness to...reactionscomments
Personal Care AssistantsMany people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal...reactionscomments
Where Does This Leave Siblings?That has been the question for our family for 39 years. I’m sure every parent asks themselves that often. My experience is...reactions1comment
The Decision to Change our Lifestyle for our DaughterJessie and her brother were born twins. It is important to realize that she was diagnosed with spinal muscular atrophy (SMA) at...reactionscomments
A Village of Healthcare ProfessionalsWe quickly needed a village of professionals. Our daughter, Jessie, was born with spinal muscular atrophy (SMA) back in 1974. We quickly...reactionscomments
Finding Financial Assistance for TreatmentMany illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be...reactionscomments
