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
Building Design and Accessible Bathrooms...We left off when I was joining the board of directors at my local YMCA. If you haven’t read part one of...reactionscomments
Working With Health Aids and In-Home Assistants...Children with spinal muscular atrophy (SMA) face difficulties with daily activities at home and school. They also require around-the-clock monitoring and care...
Other Diagnostic Tests Used in SMA...Spinal muscular atrophy (SMA) is caused by problems with nerve cells in the spine that control muscles. Tests for muscle health and...
Running a Successful Business From Your Phone...Have you ever wondered, “Am I capable of being a business owner?” Living with SMA, we run into the constant challenges of...reactions1comment
Food Texture Modifications...People with spinal muscular atrophy (SMA) may have difficulty swallowing and other feeding problems. This can lead to undernutrition, which can make...
Hiring the Right PCA...I like to equate hiring a new caregiver to committing to a good relationship. It takes more time in the beginning, but...reactions1comment
Type 1 Werdnig-Hoffmann...Infants with type 1 spinal muscular atrophy (SMA) have severe symptoms compared to those with other common types of SMA. Symptoms usually...
Regrets From a Father: Real Life Personal SMA Family Dynamics...I have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor...reactionscomments
SMA Financial Frustrations...I stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers...reactions1comment
