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
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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
A Walk With Someone New...Yesterday, a friend invited me on a walk, because she is raising money by walking for a charity. We decided to walk...reactions1comment
The Dreaded "What-If's"...I’m a 44-year-old man living with spinal muscular atrophy type 3. Looking back now, I was pretty independent as a kid all...reactionscomments
How I Met Mike...One of the great things about little kids is that they have no filter. For example, when adults see someone with a...reactions1comment
Mike Noon...Mike lives in the suburbs of Philadelphia, PA. He was first diagnosed with spinal muscular atrophy type 3 in 1989, when he...
Finding the Right Caregivers...Living with a disability, I like to consider a full-contact sport. It requires your mind, body, and soul to be as healthy...reactionscomments
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Coping and Grief with SMA...Caregiving for a loved one with spinal muscular atrophy (SMA) can be an emotional rollercoaster. It is normal to feel shocked or...
Understanding Clinical Trials...A clinical trial is a type of research. Research is the process scientists use to explain how our bodies work or why...reactionscomments
Clinical Trial Participation...Clinical trials are medical studies that pose a question: Does a new treatment work better than older treatments? Each year, thousands of...reactionscomments