ABLE Savings Accounts...Do you know what an ABLE account is? Do you have experiencing opening one/contributing to one for your own expenses of living with a disability? Share with our SMA community!...Reactions0reactionsComments0 repliesTips & Advice
The Benefits of Opening an ABLE Account...Financial planning can be a daunting task for anyone, but for individuals with disabilities, such as spinal muscular atrophy, and their families, it comes with an added layer of complexity...Reactions0reactionsComments0 comments
Top Things To Do in NYC That Are Accessible...My mom and I love to travel, and as we live close to the city, New York City, I wanted to share some of my favorite things to do and...Reactions0reactionsComments0 comments
Embracing Independence: My Journey with Incontinence...Growing up with spinal muscular atrophy (SMA) and relying on a wheelchair, my daily life was an intricate dance of navigating the challenges that most people never even consider. One...Reactions0reactionsComments2 comments
Just Let Me Return This...Home delivery of groceries and online shopping became a normal occurrence for many people during the COVID-19 pandemic. As someone with mobility issues because of my spinal muscular atrophy, my...Reactions0reactionsComments1 comments
How do you find balance?...When you're ill for a long time and can't stick to the things you love doing, how do you manage your mental health? Do you find it difficult to balance...Reactions0reactionsComments1 replies
How to get up from ground after falling?...Ever since I lost my ability to get up from the floor unassisted I am always really cautious while going outside and roaming about because if I fall down I...Reactions0reactionsComments2 repliesAssistive EquipmentTips & AdviceTravel
Balancing Life When You Are Ill...Life with SMA has two halves - the mobility half, and the illness half. Managing the mobility issues and illness of spinal muscular atrophy is something we all focus on...Reactions0reactionsComments2 comments
Jennifer Greer...Jennifer Greer is a vibrant 28-year-old woman who thrives despite Spinal Muscular Atrophy Type 2. Diagnosed at just 18 months old, she’s been navigating life from her power wheelchair since...
Standing my ground ...Hello everyone! I recently wrote an article that I'm waiting to get published all about standing my ground. I've gotten better at boundaries (even though I feel the guilt sometimes...Reactions0reactionsComments1 repliesMental Health
Talking to Others About SMA...What are your tips for talking to your family and friends about SMA? What are your tips for talking to your coworkers or casual friends about SMA? Mike: This is...Reactions0reactionsComments1 comments
Getting Tips and Support at the 2023 Cure SMA Conference...Last year was the first in-person Cure SMA conference post-pandemic, and unfortunately, I couldn't go due to health issues. I was absolutely devastated, so to finally be able to go...Reactions0reactionsComments0 comments
Active yesterdayCommode accessories...Since I have sma I cannot sit down and get up on any chair that is lower than 24 inches. I have a query with respect to using public commode...Reactions0reactionsComments11 repliesAssistive EquipmentTravelTips & Advice
How to Maintain Privacy with Around-the-Clock Care at Home...The other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids running around and a spouse working. I simply...Reactions0reactionsComments0 comments
This is How True Crime Podcasts Start...This is how true crime podcasts start: As someone who travels with my power wheelchair and who cannot transfer easily for trips, I always plan far in advance for wheelchair...Reactions0reactionsComments0 comments
How do you manage your energy with SMA?...What tips do you have that have helped you manage and conserve your energy while living with SMA?...Reactions0reactionsComments4 repliesTips & Advice
Managing Energy...I often struggle with low energy, year-round, but especially in the winter. I'd like to share some things that have helped me and hopefully will help you. I get low...Reactions0reactionsComments6 comments
Awareness Month 2023 Spotlight: Your SMA Story ...What brings you to our community? Do you identify has a caregiver, patient, or health care provider? Use this forum space to connect with others. Join the conversation!...Reactions0reactionsComments0 repliesAwareness
Can I be ...I was hurt on the job in 2018 I was hit in the head by a 250lb beem and after 6 surgerys im left prelized on my left side and...Reactions0reactionsComments2 repliesDepression
Challenges of SMA and Its Progression...Living with a chronic condition like spinal muscular atrophy (SMA) can have significant social and emotional impacts on individuals and their families. The challenges presented by SMA, particularly in its...Reactions0reactionsComments1 comments
