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
My Sibling Has SMA...Siblings of people with spinal muscular atrophy (SMA) often help their parents with caregiving. This can impact your life in positive and...
Dealing with Challenges at School...In the summer of 1988, we moved our family to a new home. Mike was starting 6th grade, our son Daniel started...reactions1comment
Sports and Recreation...Children with spinal muscular atrophy (SMA) can enjoy many of the same recreational activities as their peers. Exercise and recreation are important...
Choosing Care Over Career...In the United States, there are harsh limits placed on disabled people. Limits on how much money they can make, how much...reactions1comment
Coping with SMA Diagnosis...Getting diagnosed with any chronic illness is an overwhelming experience. In spinal muscular atrophy (SMA), diagnosis usually happens at birth or during...
Living Life in a Wheelchair...Living life in a wheelchair, you often encounter and have to react to two different situations that sound the same: stairs and...reactionscomments
Shaving With a G-Tube and Keeping My Stoma Clean...Previously, I wrote an article about my love/hate relationship with my g-tube (Steve Stoma). One of the main reasons why it felt...reactions1comment
Asking for Medical Accommodations at Your Job...Having SMA and asking for help is unfortunately just a part of our disability. Although this may be difficult at times, we...reactionscomments
To Trach or Not to Trach...That is the question. Whether tis nobler... Despite that Shakespearean introduction, this is a serious topic that many of us will have...reactions1comment
Subscribe to Our Weekly Newsletters...Do you want more information about spinal muscular atrophy? Are you looking for support? Do you want to talk to others affected...reactionscomments
Comparing Developmental Milestones of Twins...My late wife Zelda was pregnant in 1974! This was our first pregnancy! Zelda was under the care of her obstetrician. She visited...reactions1comment
