Severe neck weakness I'm 39 years old and live in Portugal. Was diagnosed with SMA type2 in London (Hammersmith Hospital) around my early teenager years, and at the age of 18 I had...Reactions 0 reactions Comments6 repliesComplicationsSurgerySymptoms
Food alternativesI am a SMA type 3 person and onset started around age 13. I am currently 38 and ambulatory, though it is annoying and painful when I walk for long...Reactions 0 reactions Comments3 repliesDiet & Nutrition
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...Reactions 0 reactions Comments0 repliesMental Health
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?...Reactions 0 reactions Comments1 repliesTips & Advice
Managing DepressionI want to understand how personal with SMA cope with mental depression when you lose the ability to do certain things which you were able to do previously? for example...Reactions 0 reactions Comments21 repliesCopingDepression
Loss Support Thread Have you lost a loved one to spinal muscular atrophy? This is a safe space for you....Reactions 0 reactions Comments0 replies
Accessibility EtiquetteWhat guidelines need to be written in an “accessibility etiquette” guide? What drives you crazy about the way people interact with you as someone with a disability? How do you...Reactions 0 reactions Comments2 repliesAwarenessFriends & FamilyMyths & Misconceptions
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...Reactions 0 reactions Comments1 repliesDepression
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!...Reactions 0 reactions Comments0 repliesAwareness
Have you experienced thoughtless comments recently?One of our patient leaders, Mike, shared in a recent article that he's heard thoughtless comments from folks about being in wheelchair. These comments really strike him the wrong way...Reactions 0 reactions Comments0 repliesStigmaTips & Advice