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.
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
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?
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?
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
My daughter has been dealing with constipation lately. Wasn’t sure if it is Risdiplam related or not. When she does poop and it’s soft it burns her bottom. She will get a raw butt quick. Any suggestions on how to help soften her stool? She turned one in December. She can eat soft solid foods by mouth and drink liquids by mouth. We have a gtube but do not currently use it.
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.
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
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