Spinal Muscular Atrophy With Progressive Myoclonic Epilepsy (SMA-PME)...Spinal muscular atrophy with progressive epilepsy (SMA-PME) is a very rare type of SMA. SMA-PME is also an inherited neuromuscular disorder. However...
Top Tips for Hiring a PCA...Let’s begin with what a PCA is, and what a PCA is not. A personal care assistant should entail three things: Personal...reactionscomments
Managing Caregivers...When I was of college age, I was fortunate enough to attend a school that at the time offered a dormitory providing...reactionscomments
A Conversation Between Myself and Heaven...One night, many years ago, before dinnertime, I was sitting at my kitchen table by myself and thinking about Jessie, who had...reactions1comment
The Freedom to Swim...Sometimes I just want to stand up and fling my arms around or jump or spin really fast until I’m dizzy and...reactions1comment
Office of Vocational Rehabilitation (OVR)...I mentioned this program briefly before. This was extremely helpful to our situation when we first were introduced to it in 1995...reactionscomments
Frustrations Around Able-Bodied People Using the Accessible Bathrooms...If you’re following along, this is Part 4 of my story. The first three articles are linked below: The event that prompted...reactionscomments
Fashion Within the Disability World...This is a topic that I think the world is expanding upon: fashion within the disability world. For a long time, I...reactions1comment
Giving Up Driving...I touched on this topic a little in my article “How Expensive Is That Minivan.” I drove without any driving adaptations for 24...reactionscomments
How To Be a Good Friend...Recently I’ve read a few posts regarding being disabled and having friends. One was in a Muscular Dystrophy Facebook group where someone...reactionscomments
Preparing For the Working World ...With college behind him, it was now time for Mike to apply for that first job in the business world. I know...reactions1comment
A Scary ICU Experience...Years ago, an event caused us PTSD. Jessie, 16 years old, was in the hospital’s intensive care with severe respiratory difficulties for...reactionscomments
Talking to Your Child About SMA...When your child has a long-term illness like spinal muscular atrophy (SMA), it is normal for them to have questions. They may...reactionscomments
Physical Examination to Diagnose and Monitor Progression...Spinal muscular atrophy (SMA) must be diagnosed with a genetic test. Before suspecting SMA, doctors often use physical exams to help distinguish...
Mikes New Trial For The Family - A Cancer Diagnosis...It’s now the start of a new college school year. As always, we all load up the car and take Mike back...reactionscomments
Designing New Locker Rooms...This is part 3 of an ongoing story. If you haven’t been following along you might want to start with Part 1...reactionscomments
My Partner Has SMA...Partners or spouses may be the main caregiver for adults with spinal muscular atrophy (SMA). Partners may need to help with daily...
Palliative Care...Palliative care is an important part of treatment for spinal muscular atrophy (SMA). This refers to therapies that focus on comfort more...
Monitoring Calories and Protein Consumption...After getting my g-tube placed in 2017, food became more of a luxury than a necessity for nutrition. While my feeding tube...reactionscomments
The College Years...The time came to visit some college campuses. Mike really wanted to go to school in Florida, but the realization of his...reactionscomments
