Shaving With a G-Tube and Keeping My Stoma CleanPreviously, 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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments1 comments
Eating with SMASitting 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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
The Importance of ImprovisationMobility 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... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
My Daughter Was Not Meeting Developmental MilestonesThe 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... By Marc Mitnick2 min readBookmark for laterReactions 0 reactions Comments0 comments
Van-Accessible ParkingMike 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... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments3 comments
Patient LiftsHaving 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... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments0 comments
Subscribe to Our Weekly NewslettersDo 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... By Editorial Team1 min readBookmark for laterReactions 0 reactions Comments0 comments
Hope is The WordReliving 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... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
Asking for Medical Accommodations at Your JobHaving 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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments0 comments
A Walk With Someone NewYesterday, 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... By Lewis Beatty2 min readBookmark for laterReactions 0 reactions Comments0 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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Interviewing for a Job When You Have a DisabilityInterviewing 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... By Chaz Hayden2 min readBookmark for laterReactions 0 reactions Comments1 comments
To Trach or Not to TrachThat 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... By Lewis Beatty2 min readBookmark for laterReactions 0 reactions Comments1 comments
Comparing Developmental Milestones of TwinsMy 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... By Marc Mitnick3 min readBookmark for laterReactions 0 reactions Comments1 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... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments2 comments
How I Met MikeOne 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... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments1 comments
SMA and COVID-19Since 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"... By Editorial Team2 min readBookmark for laterReactions 0 reactions Comments0 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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
Remembering the First DaysAs you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day and the birth of each of our children... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments1 comments
Finding the Right CaregiversLiving with a disability, I like to consider a full-contact sport. It requires your mind, body, and soul to be as healthy as possible. And in most cases, it requires... By Lewis Beatty2 min readBookmark for laterReactions 0 reactions Comments0 comments