Worst Case Scenario: a Cold...*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood* As of writing this, I was sick this past Thursday and then finally felt better today...Reactions0reactionsComments1 comments
FeaturedTips for Cold/Flu Season...Getting sick is no fun! What're some tips and tricks you have to survive cold and flu season?...Reactions0reactionsComments4 repliesTips & Advice
Will you take our In America survey and help others understand the true impact of SMA?...The In America survey is now closed. To better understand the patient experience and realities of SMA, we are fielding our SMA In America survey. By taking this anonymous survey...Reactions0reactionsComments0 repliesAwareness
What A Small Cold Can Do...In October, my mom caught a little cold during a trip to her doctor's office. She suffered a sore throat, cough, runny nose, and a mild migraine for about four...Reactions0reactionsComments0 comments
Getting Creative: Lack of Assistive Equipment...Do you have any recent experiences of having to get creative when there is a lack of assistive equipment, or your circumstances don't allow you to access the equipment that...Reactions0reactionsComments3 repliesAssistive Equipment
My Battle With Chronic Pain and SMA...In my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the growing-up process with SMA, something we all had...Reactions0reactionsComments1 comments
The Evolution of Adaptive Showering Equipment...Many people with disabilities, like spinal muscular atrophy, may struggle with self-care necessities, especially bathing/showering when access is hard. My situation was no different, and I want to describe the...Reactions0reactionsComments2 comments
Sorry To Miss The CureSMA Conference...I really wanted to go to The CureSMA Conference this year! I have no idea why Mike didn’t sign us up. I’m still so mad at him! Why on earth...Reactions0reactionsComments3 comments
Struggling to Find the Right Fit...It can be frustrating shopping for clothes that fit my body comfortably, especially dress clothes. I am at an age now where I am getting out of always wearing sweatpants...Reactions0reactionsComments1 comments
Overwhelmed...Last year, to make a long story short, I had a bunch of GI issues. The GI team decided to give me a peg tube. I want to be friends...Reactions0reactionsComments2 comments
Tips for a Successful Night Out as a Wheelchair User...Going out can be nerve-wracking for anyone, but when you're a wheelchair user with spinal muscular atrophy, the stress can multiply. From accessibility concerns to dealing with a crowd of...Reactions0reactionsComments1 comments
New Year - New Me?...I never liked the phrase "new year, new me." It made me feel like everything I did last year was thrown away, and none of it mattered. What's wrong with...Reactions0reactionsComments0 comments
Friends That Travel Together, Stay Together...People say travel friendships can last a lifetime. With traveling, it shows how solid your friendships are because you will know how they are through day and out. Just like...Reactions0reactionsComments0 comments
Getting Ready in the Morning...Getting ready in the morning when you have spinal muscular atrophy (SMA) can be challenging because of the lack of strength and inability to move much, but with a little...Reactions0reactionsComments0 comments
Things I Wish People Knew...Today I wanted to talk about SMA (spinal muscular atrophy). Most folks out there aren’t exactly experts on it, so I want to break it down in simple terms. SMA...Reactions0reactionsComments2 comments
Family Considerations...If you have a child with spinal muscular atrophy (SMA) or are a carrier of the SMA gene, you face some serious decisions. It can be helpful to learn more...Reactions0reactionsComments0 comments
Holidays with SMA...Are there any special accommodations you and you family/friends have adopted to make special occasions easier? We'd love to hear about how you celebrate the holidays! Share with us below....Reactions0reactionsComments1 replies
Adding Fun to Tiring Doctors Appointments...In general, I believe that all of us would like to be and stay healthy as much as possible. With spinal muscular atrophy (SMA), we have a bunch of doctors...Reactions0reactionsComments2 comments
Thoughtful Christmas Gifts for Wheelchair Users...I cannot believe it’s already that time of year. I’m getting the question, “What do you want for Christmas!?” I have found myself wanting to give practical yet creative ideas that...Reactions0reactionsComments0 comments
First Grade-How My Advocacy Started...I have spinal muscular atrophy (SMA), a condition that affects my muscles and mobility. But the amazing part is that I went to a regular school for first grade way...Reactions0reactionsComments0 comments
