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 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
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
My heart goes out to you. I find it hard to imagine being in your situation. Are there care facilities available for you?
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.
Wow, this is the first I've read of this. Can anybody confirm?
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?!
Have you considered having them use one of those electric jobbies that basically files them down? Less risk of injury.
One day last week I asked my attendant as usual to clean my eye glasses before putting them on me. They were still really foggy...as an artist , I really rely on my vision, so he cleaned them again . Still foggy, tried glass cleaner, lens cleaner etc. After an argument in which I insisted that I was not in fact going blind, I went to the eye glass store and discovered that I need new glasses...the scratch guard wore off my glasses...now everything is foggy. I thought scratch guard was… read more
Thanks. I know there are Medicare Advantage plans that cover eye glasses...but apparently regular Medicare does not and it appears Medicaid only to age 21. The problem is I am not sure if my… read more
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
For those of you that are single...What do you do to get sexual relief? I know it's a bit of a personal question, but as I get weaker and lose the use of my hands, I'm struggling to get this taken care
This is a very real issue
I have SMA3
I’m 36 and was diagnosed at age 5. I just had my first baby almost 5 months ago. It’s tough. So worth it but I’m struggling during the day with him due to lack of strength and covid… read more