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 later Reactions 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 later Reactions 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 later Reactions 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 later Reactions 0 reactions Comments1 comments
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 GI issues. With the diagnosis came orders of... By Allie Williams3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 rights under these laws.1,2 The Americans with Disabilities... By Editorial Team3 min readBookmark for later Reactions 0 reactions Comments0 comments
Why Is Self-Care Important and How Can We Practice It?Self-care is one of those things we all know we should take care of, but neglect during stressful times. When managing daily chores, work, school, family, and friends gets to... By Editorial Team3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 among us. I know that most parents do... By Megan DeJarnett2 min readBookmark for later Reactions 0 reactions Comments0 comments
Disability BenefitsConditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits from the US Social Security Administration (SSA) can... By Editorial Team3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 would be extremely boring if we never had... By Mike Noon2 min readBookmark for later Reactions 0 reactions Comments0 comments
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. It also aims to expand opportunities for health... By Editorial Team4 min readBookmark for later Reactions 0 reactions Comments0 comments
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 my circumstances. Most importantly growing up in a... By Mike Noon2 min readBookmark for later Reactions 0 reactions Comments0 comments
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 six months of age. My son did not... By Marc Mitnick2 min readBookmark for later Reactions 0 reactions Comments0 comments
Telling Loved Ones About Your Child's SMA DiagnosisAfter getting news that your child has a serious illness like spinal muscular atrophy (SMA), you will likely turn to family and friends for support. Here are some things to... By Editorial Team3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 realized that we needed to plan for a... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments0 comments
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 challenging. Insurance plans cover some expenses. But out-of-pocket... By Editorial Team2 min readBookmark for later Reactions 0 reactions Comments0 comments
My Good Days: A Resource for Financial HelpI’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically refers to the extra expenses that are incurred... By Mike Noon2 min readBookmark for later Reactions 0 reactions Comments0 comments
Navigating School Accommodations for Children With SMAThe United States government has many laws that protect rights to education for children with disabilities. Spinal muscular atrophy (SMA) is considered an orthopedic impairment under these laws. This means... By Editorial Team3 min readBookmark for later Reactions 0 reactions Comments1 comments
That Hospital Stay and One Nurse in the ICUIn 1974, my wife and myself were frightened when the Pediatric Neurologist diagnosed my daughter, Jessie, with spinal muscular atrophy (SMA) when she was less than a year old. During... By Marc Mitnick3 min readBookmark for later Reactions 0 reactions Comments3 comments
Finding HalloweenThe festive side of the year is around the corner, and that always gets me excited! A key part of living with spinal muscular atrophy (SMA) for me has always... By Michaela Hollywood3 min readBookmark for later Reactions 0 reactions Comments1 comments
