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Top 10 Search Results for "getting started on mysmateam"

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How Do You Ask For Help From Family Or Friends?
A mySMAteam Member asked a question 💭
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A mySMAteam Member

My experience is that everyone has a limit of how much help they are willing to provide...and no matter how hard you might try...your needs are likely to extend beyond that of which even family are… read more

How Do I Edit My Story?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Great question!

1. First, select the menu icon in the upper right corner of the site, then under My Profile, select 'my story.'
2. Once you've done that, you'll be on the 'my story' page. You can… 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?

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

Anyone With Type 1 Sma Child Who Got Zolgensma?
A mySMAteam Member asked a question 💭
A mySMAteam Member

Yes, at 8 months old. His legs started moving in 2 days. He can now swallow, stand independently, walk short distances, and started riding a bike with training wheels. My general answer is to reply… read more

Does Anyone On Here Use A Robotic Walker? In Specific We Are Looking At Getting The Trexo.
A mySMAteam Member asked a question 💭
A mySMAteam Member

I have seen amazing results for kiddos with Neuro muscular diseases using the Trexo!

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?

Clipping Fingernails
A mySMAteam Member asked a question 💭

I am interested to find out what everyone does regarding having their fingernails clipped. I struggle with this because I need help doing them, and it's hard for someone to do them. I often end up with cuts on my fingers, and I do not like getting them cut. I always have long fingernails because of this, LOL. Any good best practices that anyone has come up with? I can't stand this. Did I mention that?!

A mySMAteam Member

Have you considered having them use one of those electric jobbies that basically files them down? Less risk of injury.

Zolgensma For Adults
A mySMAteam Member asked a question 💭

There was an article last November saying Zolgensma could be helpful for adults. Will they be doing a clinical trial on that soon? I have not seen anything further on it.

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A mySMAteam Member

Wow, this is the first I've read of this. Can anybody confirm?

How Handle Dealing With Someone Dating Who Is Getting Very Serious...are Not Sure If Able Because Of Disability?
A mySMAteam Member asked a question 💭

Am having very conflicted feelings as I know I may never meet someone again who was interested in me in this way...but am not really sure can physically, emotionally and financially fullfill this person's visions for a future. I don't want to break up as care for this person...but don't think i could really fullfill her wishes.

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A mySMAteam Member

I've struggled with this my whole life and continue to do so...I subconsciously sabotage every close relationship for fear of not being able to provide what that person deserves. I never thought it… read more