Quick Links
Resources
About mySMAteam
Powered By
Can Somebody Recommend Leg Support Items To Assist In Walking?
Ihave the same question!
When Does A Patient With Spinal Muscular Atrophy Need A Laryngeal Breathing Tube?
How Can A Person Living With SMA Reduce The Recurrence Of Bronchial Infections E.g. Bronchitis, Pneumonia?
I have SMA and constantly suffer from bronchial infections due to post nasal drip and would really like to be able to manage it .
Bipap at night with settings you can handle and that will help you sleep through the night. Good suction, coughalator and vest treatments morning and night(this is all what we do for my son) and I… read more
How Do You Manage Caregivers?
I’m currently struggling with hired caregivers who’ve become too comfortable after years of working with me and have began to complete less and less without my supervision and reminders. How do I remind them how vital they are to my days?
I moved from US to Colombia S. America so I could afford caregivers. NY advice get out of US, my caregivers are kind, full time and $12 a day.
Anxiety Experiences With Sma Is Intrinsically Linked To The Condition Not As A Result Of, Is Comes With A Fatigue Totally Different
I anxiety comes from total lack of support services found in USA
Earning Money While On Disability
How do you earn money without loosing critical disability benefits and Medicare ? So, in many ways, I am very lucky. When I started needing attendant care, I did the math and there was no way I could earn enough money, keep working, and pay for attendant care. The programs in my state that cover attendant care very strictly require an individual have less than $2,000 in assets total (including such things as gold teeth, burial plots, etc) and not be employed. If not for my father's support… read more
You have to go informal, I.e. not report earnings, they left us no other option. Create business in others name, yo do the work, selling online for example. The 2k limit is ridiculous, there is… read more
I Have Scoliosis For Many Years Now. At Which Point Should I Take A Surgery? I Don’t Have Breathing Issues. Only Having The Curvature
I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Don’t Know What To Do.
The doctor said to do balance and strength exercises but that wont help with atrophy. Do I visit a neurologist for advice or give up doing things in the house like preparing meals and washing up.
Sma
What are the most dangerous things a sma patient can face
Falling
Bipap
Please answer, I only use the bipap device when sleeping. Is it possible that I do not use gaseous breathing in the future?
I would ask your doctor that question. I wish you the best!!
Your Privacy Choices