54 Year Old MS Disabled Cindie Seeks Disability Grant For Medical Expenses
by Cindie Sweeney
(Fort Myers, Florida, USA)
My name is Cindie, I am 54 years old and I have Multiple Sclerosis. I was born and raised in Cleveland, Ohio, which is not necessarily the best place to reside if you have this disease.
The plus is that it is the place where I was volunteering at the Ronald McDonald House and it was there that I met and fell madly in love with my husband Sean.
Sean was in the Navy. Sean was in the Gulf War and came home on leave. Sean's mom was the weekend relief manager at the Ronald House. My shift was on Friday afternoons each and every week.
Sean came home on leave and since his mom was working her shift, he came there. Well, he walked in and all I saw were these fabulous blue eyes.
I never understood love at first sight but I sure understood it that day!
We've been together for 20 years. We have 2 dogs, 2 birds and my disability, which I share with Sean. For many years Sean worked and my mom assisted as the MS changed.
While things were really good I trained in a muscle gym and became a power lifter.
My trainer told me that he would learn about the MS and at the very least would make me so strong that if there were further flare-ups I would be able to handle them.
When someone in the family is disabled everyone gets to own it. The MS has been present since I was 30 years old.
MS carries many similarities to other neurological disorders and can be difficult to diagnose.
The first flare up began in my right eye. This is a common beginning. The doctor said he had to monitor me so that he could see which route that I would be traveling.
Six years later was the big flare-up, which landed me in the relapsing remitting category.
For many years I did very well. My healthcare has been followed by a clinical biochemist. This doctor knew that as a female “MSer” my hormones were a likely problem as well.
Along the way the biochemist found a hormonal cancer developing, which he was able to stop.
Life moved along comfortably for a long time. Along the way we lost my dad. Another setback.
Then Sean landed a job that took him 13 years to achieve. His navy training was going to payoff.
Sean went to work as the street superintendent for the city of Brunswick. We bought a beautiful new home with a winding staircase.
I loved the house but the MS was rearing its ugly head. We forged ahead, brought my mom and got her a new apartment and settled in.
I needed to see the neurologist; something wasn't right. An MRI was ordered. By the time I got home from the MRI the phone was ringing.
The doctor said that I had cervical spinal cord swelling, not unusual for an MS patient but steroid treatment was necessary.
The visiting nurse had to come to set up my IV therapy for a 3-day run.
Life was never quite the same after that. By this point Sean's mother died also. At her funeral I contracted an upper respiratory infection. This type of contagious virus is dangerous to an MS patient. So began my undoing.
Over the next few years I had to stop driving. I went from a walker to a motorized chair.
I was still very healthy. I still worked with my very devoted trainer. I lost my ability to write and do my artwork. I could no longer play my guitar. I had studied at the Cleveland Music Institute.
Mom came daily by bus to help me out so Sean could still work. I was managing but I couldn't really do the steps anymore.
I could no longer cook or care for my home. I was so sad. This life wasn't mine anymore.
As if that wasn't maddening enough, Mom slipped and fell on the ice, was mishandled by the hospital and died.
Three days later, Sean was laid off. We lost our home and had to go the bankruptcy route. Unemployment will be done shortly.
We don't have enough money to support my handicap. I now need a lot more durable medical equipment.
We both have prescriptions, some of which are not covered. Sean can't work, as we can't afford a caregiver.
I take Copaxone, which is a daily injection and is covered by the Chronic Disease Fund.
Sean has some drugs taken care of through an advocacy group, others through a Canadian pharmacy. Sean is hypertensive and asthmatic.
We are now extremely worried. Grant searching isn't going well but we would like one.
I have social security but that isn't enough. We are looking for financial assistance, know that it's available but don't know how to get to it.
First notable attack was in 1991, right eye optic neuritis. I was termed relapsing, remitting but the disease has changed.
I was right handed. I've lost fine detail movement. I can no longer write my name, tie my shoes, button my clothes, zip my pants.
I can no longer drive a car, draw, paint, cook a dinner or play the classical guitar.
For many years I did well and reached goals. These days the goal is to not fall. I am considered totally disabled.
We are short on money at all times. Some meds we have to pay for out of pocket.
Thanks for reading; hopefully you can direct us in a more positive direction.
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