FeaturedTreatment Journey Update...Where are you on your treatment journey? Have you begun treatment or are you weighing your options? Do you have experience switching or stopping treatment? If you stopped, why did...Reactions0reactionsComments7 repliesTreatment
Letting Go of a PCA...Like any other job in this world, being someone’s personal care assistant just isn’t for everyone. But unlike every other job, this position is very close to home. Both literally...Reactions0reactionsComments0 comments
5 Disability Tips for Attending Large Venue Events...Who doesn't like going to a concert, performance, or sporting event? The problem is, it's not always easy to attend events at large events while living with a disability, such...Reactions0reactionsComments0 comments
Kellie Cusack...Kellie was previously a health leader on SpinalMuscularAtrophy.net. Kellie Cusack is a 23-year-old woman (pronouns: she/they) from New Jersey. She enjoys music, singing, escaping into fantasy worlds with books, and...
How Do You Handle Cold Weather?...We asked our Patient Leaders here at SpinalMuscularAtrophy.net, "How do you handle colder weather?" Does cold weather impact their SMA symptoms? Do they have go-to workarounds to avoid going out?...Reactions0reactionsComments0 comments
Will you take our 2023 In America survey and help others understand the true impact of SMA?...To better understand the patient experience and realities of SMA, we are fielding our 2023 SMA In America survey. By taking this anonymous survey, you can help everyone better understand...Reactions0reactionsComments0 repliesAwareness
Hurt Back and Guilty Conscious...I’ve talked about the guilt I deal with in regards to the amount of work people need to exert in order to assist me throughout the day because of my...Reactions0reactionsComments1 comments
Just a Girl in the Men's Restroom...I can honestly say some of my funnier moments coping with spinal muscular atrophy have come from having to use public restrooms. However, it wasn’t until I got married that...Reactions0reactionsComments1 comments
Making Sacrifices or Accommodating Each Other...Relationships are all about give and take. We wear so many different relationship hats in our life. Child and parent, sibling, friend, mate and co-worker to name a few. When...Reactions0reactionsComments0 comments
Why am I Always the Party Pooper?...I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and GI issues. With the diagnosis came orders of...Reactions0reactionsComments0 comments
Celebrating the Holidays and Special Occasions...We asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted to make special occasions easier? What is the...Reactions0reactionsComments0 comments
Hope for the New Year...It’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new year for themselves and others living with spinal...Reactions0reactionsComments0 comments
A Question For The Community: Comfortable Bed Cushions ..."My wife has SMA and we are spending a fortune trying to find the right cushion for her to be able to sit. She started getting bedsores about a year...Reactions0reactionsComments2 repliesTips & AdviceAssistive Equipment
A Challenge I've Recently Overcome Is ______________...Fill in the blank. What is a challenge you've recently overcome while living with SMA? How would you encourage others who are currently facing challenges?...Reactions0reactionsComments0 repliesTips & Advice
Resources for Veterans, LGBTQ+ People, and Other Special Groups...Coping with a chronic health condition can be challenging for you, your family, and your caregivers. You rely on your healthcare team to manage your condition. However, there are other...
A Misconception I've Faced Living with SMA Is __________...What misconceptions have people expressed to you about living with SMA? How did you approach them / prove them wrong? Join the conversation below....Reactions0reactionsComments0 repliesTips & AdviceMyths & Misconceptions
An Overview of Disability Rights Laws...The US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain rights under these laws. The Americans with Disabilities...Reactions0reactionsComments0 comments
Unlearning Ingrained Ableism...I'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I didn't know anyone who was disabled personally until...Reactions0reactionsComments1 comments
Why Is Self-Care Important and How Can We Practice It?...Self-care is one of those things we all know we should take care of, but neglect during stressful times. When managing daily chores, work, school, family, and friends gets to...Reactions0reactionsComments0 comments
FeaturedI'd Like To Thank My Caregiver For _______________...What would you say to your caregiver? What is something you're most grateful for when it comes to your relationship with them? Start and join the conversation below....Reactions0reactionsComments2 repliesHealthcare Team
