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March 18th, 2010
I'm a 41yo male w/ MD (SMA-Type4), I'm receiving disability. My reason for writing you is my wife. She's 41yo & has been w/ me since my onset of MD. As I was attempting to join the Air Force in Dec-1989, I was diagnosed w/ MD & we met in 92'. I started receiving disability in 94' & I fought hard for 7yrs. to find a field of education/work that I could perform at. I 1st graduated in the electronics field in '93, only to be unable to perform 1 year later because of muscle weakness. My wife & I married in 95', something we both are very proud of. In 98' I graduated from drafting & design, a profession I truly loved. Now, I became wheelchair dependent in 98, but my wife, nor I, would let that stop me. I graduated in 99' & w/ the Ga Dept. of Rehab. help started my own home-based business in the architectural & mechanical design field. Because of a professional acquaintance, I was offered a position w/ his company in 2001, which I "proudly" accepted & PROUDLY removed myself from govt. disability. My wife & I were ecstatic at the thought of us "both" being back in the working field. Unfortunately, it was short lived, approx. 1 year later, because my muscle weakness was now preventing my ability to make transfers to the toilet. She was able to work that 1st year, because her job allowed her to take 20-30 min., once or twice a day, to run & assist me, but eventually was told she couldn't any more. With my job being the most important (pay, insurance, benefits, etc.), we choose that I'd remain working she'd be a 24/7 care giver, housewife, & mother. In 2004, my disability became so severe, I had to start cutting back my hours & could no longer afford insurance coverage for my wife & son...That HURT so bad!...but we felt it was important for me to work as long as I physically could. By 2005 it wasn't about the money I was making at work (20-25hrs/week), it was about what it did for me as an individual, understand at this time a disability check would have brought in more money. But, with my wife & sons exceptional support/love/energy & my love to "pay taxes" (LOL) I continued working. From Jan-March of 06' I was down to 10-15 hrs./week, many times less & I could no longer maintain my job & I stepped down, going back to govt. disability & health-care for me, again no insurance for my wife & son It was a HARD & PAINFUL decision for me....Why should I get support & not them? Anyway, this is longer than I intended...sorry. My question is this: We are now struggling to pay bills & put groceries on the table. We've tried receiving assistance (food stamps, Medicaid, etc.), but we were told "you exceed the income qualifications" & "we can only go by [Doug's] medical bills". I don't understand? She's my EVERYTHING, my FOUNDATION, my LOVE...w/out her I have no abilities! She'd get out & work...but what about me? She won't just leave me here (thank God!). Can you provide any info or direction that would help do any of these? 1) Affordable insurance? 2) Food/Nutrition 3) Work assistance? 4) Support? Now, don't get me wrong, I know there's many worse off than us. We have sooo many things to be thankful for...WE TRULY ARE THANKFUL! I just see my loving & caring wife doing w/out so much...It hurts me so bad! She put's EVERYTHING off for my son & I...It hurts and I was thinking "maybe, just maybe, there's something out there for loving caregivers who work 24/7, 360 days a year?" She can be so sick, but she refuses to go to the hospital/doctor because she says "we can't offered it" or "what will yall do?" I'll be patiently waiting for your reply & thank-you so much for your help.


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