What is an Accessible Home? I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100% accessible to meet my needs. The trick is... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
For Parents: Advice on Talking to Young Children About SMAIt can be challenging as a parent to tackle difficult conversations with children and young adults about spinal muscular atrophy or disabilities. We reached out to our team of advocates... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
The FundraiserI wanted to give some insight about being receptive to the charity of well-meaning people. My coworkers were always supportive in listening to all my fears and concerns, in particular... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Transitioning To Adulthood with SMAI was raised by two amazing parents who truly fought for the best for their children, both disabled and not. Like I think most parents do, my parents did everything... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Pregnancy That Couldn't BeContent Note:This article describes the author's personal experience with pregnancy loss. I was 2 weeks late... I was never late. My heart soared... I was elated when I took the... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments1 comments
That One Time in VegasNot everything that happens in Vegas stays in Vegas, especially when it comes to sharing stories. Like how I got upgraded to a suite, free admission to the casino pool... By Chaz Hayden4 min readBookmark for laterReactions 0 reactions Comments0 comments
The Awkward GreetingA few weeks ago Suzanne and I went out to dinner with friends of ours to a new restaurant. We arrived first and were seated. While looking over the menu... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips and Tricks for Day TripsMy friends call me "Mary Poppins" because my backpack is full and has everything you could ever need in it. Like many other wheelchair users with spinal muscular atrophy, backpacks... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Odd Mom OutI had SMA type 2 and became a mother at the age of 25. I then became a mother for a second time only 20 months later. Parenting can be... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tips for Finding Healthcare ProvidersIt can be difficult to find a provider who checks all the right boxes. A good relationship and someone who you can trust is really important to feel in control... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments1 comments
I Stopped Taking EvrysdiWhen SMA treatments first became available, I honestly wasn’t sure how I felt. At the time it was just Spinraza which I never tried due to other medical issues and... By Chaz Hayden3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Frustrations of Broken EquipmentWhen living with a disability like spinal muscular atrophy, we heavily rely on equipment that gives us our independence. This freedom is wonderful until it breaks. I don’t know about... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Joy of the MDA Summer CampI think we all can remember watching the MDA Telethon over the years. In addition to raising funds for research, a week at a summer camp for kids with a... By Maryalice Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Day in the Life Without Your PCAI am coming up on my 12th year of using a personal care assistant (PCA), who isn't a personal relative. There are pros and cons to using a PCA in... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Essential Items to Manage SMALiving with spinal muscular atrophy takes a lot of preparation and planning ahead. We reached out to our team of advocates here at SpinalMuscularAtrophy.net to find out what they always... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Staying Mentally HealthyI’m in my mid 40’s and I find it encouraging that mental health has become more out in the open. I know living with spinal muscular atrophy has probably made... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Dealing with Changes in SMASpinal muscular atrophy has a host of challenges we all deal with at some stage. While all of our journeys with SMA are very different, I have always found that... By Michaela Hollywood2 min readBookmark for laterReactions 0 reactions Comments0 comments
Mental Health with SMA – A Cellphone AnalogyThe best way I can describe living with a chronic disease like SMA is that I am a cellphone and my disease is all of the open windows in the... By Samantha Przybylski3 min readBookmark for laterReactions 0 reactions Comments3 comments
Successful Intubation and AnesthesiaEvery two years I have to get minor outpatient surgery to change my peg g-tube. This unfortunately has to be performed in the main operating room in the hospital so... By Chaz Hayden3 min readBookmark for laterReactions 0 reactions Comments0 comments
Best Date Ideas for Interabled CouplesI’m a firm believer that dating your spouse is equally as important when you’re 5 or 10 years into marriage than it was when we were in those first months... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments