36 Year Old Disabled Dad On New Multiple Sclerosis Drug Treatment Seeks Help
(Hickory, NC, USA)
I am a disabled 36-year-old married man. A new multiple sclerosis drug treatment is helping me but at a possible hefty cost.
My little family unit consists of myself, my wife and our smart, amazing and beautiful daughter.
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I would love to find some kind of multiple sclerosis care that would help us enjoy a prolonged and quality family life.
My diagnosis of multiple sclerosis in January 2003 indicated years of brain scarring.
Since that initial diagnosis, there have been clear signs that my MS has progressed rapidly. When I was first diagnosed I was walking on my own two feet.
After that I started using a cane, then a quad cane, then a walker and now my power chair, which just arrived.
I have tried many MS medications and none of them worked until three years ago. The new medication shows promise according to the findings, but there's a serious, even fatal, downside.
A side effect called PML (Progressive Multifocal Leukoencephalopathy) is something that can stop me from functioning correctly and even kill me.
I am not sure how long it will work or how long I will continue to live a quality life.
One thing I would love is to have a home for my family before it is too late and something happens to me. I want to know that at least I got them a place to live that is theirs before I go.
I am worried because with my disability money I cannot get them out of an apartment. And the new treatment for multiple sclerosis is an added worry because of the risky side effects.
In the apartment I have a hard time moving around because it is not made for a disabled person.
I have a hard time getting in and out of the apartment bathtub and I cannot change anything because I do not own the property.
I would also like to have a space for my workouts and physical therapy so that I can work on keeping myself going as long as I can.
Since I have a power chair now I realize that my car is not made to transport it. I have to continue to use my walker and am not sure how much longer I can do that.
I have been trying to find something for me to do from home since 2005 and I cannot find anything.
I even tried to find a job with vocational rehab and they could not help me, so my wife has to have a job too.
I am looking for advice, grants and benefits that I may not know about, that can to be used to buy and update property for my family and me.
Since I'm already undergoing treatment for multiple sclerosis, so-called multiple sclerosis treatment therapy for me would involve grants or other help to relocate us to accessible housing.