learning self advocacy at a young age my experiences and spinal muscular atrophy | mySMAteam
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Top 10 Search Results for "learning self advocacy at a young age my experiences"

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Earning Money While On Disability
A mySMAteam Member asked a question 💭

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

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Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?
A mySMAteam Member asked a question 💭

This body shaming problem is for everyone i guess, not for people with sma only. But anyway I wanted to ask as a girl struggling with that feeling time to time

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A mySMAteam Member

Well Personally I don't much like wearing anything that Clings to My Body, because then My Crooked Body really shows. So I tend to buy what I like, but I may buy just a tad bit larger just so it's not… read more

Lack Of Oxygen In The Blood
A mySMAteam Member asked a question 💭

I have been suffering from a lack of oxygen in the blood for two months, and I started using supplementary oxygen and I did not feel better. For those who went through this experience, what did you do during the lack of oxygen?

Ataxia Telangiectasia (AT)
A mySMAteam Member asked a question 💭

Hi, does someone in the team has an idea about ataxia telangiectasia. It’s a rare neuro degenerative disease and not curable for the moment. I would like to know if there are any studies or tests in course. I’m personally following a young bit from Vietnam since 7 years. He 14 now. When I first saw him he was running and enjoying. Today he’s bed ridden and needs assistance for everything. Thank you

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A mySMAteam Member

Thank you Lisa

Scoliosis
A mySMAteam Member asked a question 💭

Does scoliosis cause death

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A mySMAteam Member

So...I don't want to paint an overly rosy picture. The healing after my surgery took months. It wasn't a pleasant experience, the healing was very painful and I had complications that led to a… read more

How To Spend A Day?
A mySMAteam Member asked a question 💭

Hi guys , I am 22 years old.I live in the countryside of Malaysia.I'm here today to ask a small question. but my english level quite bad, hope you all who read this post can take some patient to understand my voice.

Since I didn't have a university, I only finished my second year of high school.I have graduated for almost four years,but I never know how my future will happen .To be honest, I always thought I was an ordinary person, because I went to an ordinary high school, and I only realized… read more

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A mySMAteam Member

My heart goes out to you. I find it hard to imagine being in your situation. Are there care facilities available for you?

As Am Adult With SMA, How Does One Deal With A Caregiver Who Treats You Like A Child Especially When Rely On Them For Basic Needs?
A mySMAteam Member asked a question 💭

I am 40+ years old, have held jobs, am reasonably intelligent, but I still look like a teenager aside from a few grey hairs. My dad is 83, a little hard of hearing. My attendant, the only reliable attendant I can find in the entire state, is nearly the same age, is physically in much better shape, but is even harder of hearing. So I was dealing with my father who gets very grouchie when he hasnt eaten trying to help him with cooking which he doesnt know how to do and caregiver of course walks… read more

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A mySMAteam Member

Totally understand how that goes with unreliable care attendants, one's that you really don't want to be alone with or need to be either, or one's that actually really show up early or on time every… read more

Does Anyone Know Where I Could Sell Our Used Ki Mobility Wheelchair In Texas?
A mySMAteam Member asked a question 💭
I'm A Life Partner Caregiver Team Member. Trying To Get An Intermittent LOA. Doctor For Tammy Refused To Sign Unless She Fired Her PCA. ??
A mySMAteam Member asked a question 💭
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
A mySMAteam Member asked a question 💭