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 stares. While stairs need to be handled on...Reactions0reactionsComments0 comments
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 like such a big deal was keeping the...Reactions0reactionsComments1 comments
Eating with SMA...Sitting down and sharing a meal with family and friends is one of the most basic social things to do. I love food. I am also very social and love...Reactions0reactionsComments1 comments
The Importance of Improvisation...Mobility aids help many of us with SMA live as independently as possible. We use wheelchairs so we can get around as long as where we are going is accessible...Reactions0reactionsComments1 comments
My Daughter Was Not Meeting Developmental Milestones...The story begins...My daughter, Jessica was born with spinal muscular atrophy [SMA]. She was a twin and my son did not have SMA. So, I was able to compare developmental milestones by...Reactions0reactionsComments0 comments
Van-Accessible Parking...Mike usually doesn’t like to use disabled parking spaces. There are different types of disabled parking spaces: regular and van-accessible. I’ve learned being with Mike that you really shouldn’t use...Reactions0reactionsComments3 comments
Patient Lifts...Having the inability to raise oneself out of a power chair to go to the bathroom or to the bed can be daunting as one gets older and heavier, especially...Reactions0reactionsComments0 comments
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 by this condition? If you answered “yes” to...Reactions0reactionsComments0 comments
Hope is The Word...Reliving our family stories brings back many memories of my son's journey with SMA. The emotions felt were painful, inspirational, scary, hurtful, and mostly sadness. Over the years people (mostly...Reactions0reactionsComments3 comments
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 should never feel like a burden at home...Reactions0reactionsComments0 comments
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 on my street, which is a flat cul-de-sac...Reactions0reactionsComments1 comments
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 the way through my late 20’s. Growing up...Reactions0reactionsComments0 comments
Samantha Przybylski...Samantha Przybylski is a 33-year-old mother and wife, living in Wisconsin. She was diagnosed with spinal muscular atrophy type 3 at the age of 6. At the time of her...
Interviewing for a Job When You Have a Disability...Interviewing for a job can be a daunting task for anyone regardless of how physically or mentally capable you are. But when it comes to having a disability, this process...Reactions0reactionsComments1 comments
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 to face if we have not already. Depending...Reactions0reactionsComments1 comments
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 her doctor for all appointments. Everything was normal...Reactions0reactionsComments1 comments
The Frustration of "Inaccessible" Accessibility...“Come visit this awesome new restaurant,” my friends begged me. “It’s got great Yelp reviews and we’ve wanted to visit it.” “This club has the best drinks and the friendly...Reactions0reactionsComments2 comments
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 physical disability, they usually politely avert their eyes...Reactions0reactionsComments1 comments
SMA and COVID-19...Since late 2019, COVID-19 has become a household name. It has changed many aspects of daily life. Especially for those living with chronic conditions. "Quarantine," "social distancing," and "herd immunity"...Reactions0reactionsComments0 comments
How Expensive Is That Minivan?...I want to talk about the extra expenses for anyone who deals with a physical disability. Dealing with the physical aspects of spinal muscular atrophy sometimes feels like a small...Reactions0reactionsComments4 comments