Losing My Best FriendToday my household had to do something that owners of pets dread. We had to make the decision to end our dog’s pain...reactions1comment
My Thoughts on Treatment - Both Good and BadThe term that has always been used in the SMA community prior to treatment was a cure. Fight for the Cure, Cure...reactions2comments
Hiring the Right PCAI like to equate hiring a new caregiver to committing to a good relationship. It takes more time in the beginning, but...reactions1comment
Traveling with SMAWhen it came to my level of independence, I have been pretty lucky. An area of my life that was always a...reactionscomments
Regrets From a Father: Real Life Personal SMA Family DynamicsI have regrets! Not with my daughter who had SMA and passed away at 17 years old, but for myself with regrets...survivor...reactionscomments
Managing Appointments for SMASpinal muscular atrophy (SMA) can impact different parts of your health and daily life. People with SMA must see many types of...reactionscomments
Why Are You in a Wheelchair?This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
SMA Financial FrustrationsI stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers...reactions1comment
Finding the Right Healthcare TeamThere are many different providers who treat spinal muscular atrophy, but certain factors like location, insurance, access, and cost can present challenges...reactionscomments
Things We Learned as ParentsMike’s brother, Dan, was a competitive runner since fourth grade and he was Dan’s biggest fan and supporter. By high school, Mike...reactions1comment
Grips for a Wheelchair JoystickLiving with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that...reactions1comment
Choosing Care Over CareerIn the United States, there are harsh limits placed on disabled people. Limits on how much money they can make, how much...reactions1comment
Dealing with Challenges at SchoolIn the summer of 1988, we moved our family to a new home. Mike was starting 6th grade, our son Daniel started...reactions1comment
Dealing With GuiltGuilt can be rough to deal with. Everyone deals with guilt on some level. I’m sure my parents and siblings have dealt...reactionscomments
Patient Assistance Programs for SMAAffording your spinal muscular atrophy (SMA) drugs and other treatment costs can be challenging. Luckily, there are programs that may be able...reactionscomments
Living Life in a WheelchairLiving 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 CleanPreviously, I wrote an article about my love/hate relationship with my g-tube (Steve Stoma). One of the main reasons why it felt...reactions1comment
Eating with SMASitting down and sharing a meal with family and friends is one of the most basic social things to do. I love...reactions1comment
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...reactions1comment
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...reactionscomments
