Disability Grants For Multiple Sclerosis Disabled Amy To Enjoy A Normal Family Life
by Amy Gurowitz
(Montclair, New Jersey, USA)
My name is Amy Gurowitz and I have been living with Multiple Sclerosis since 1988. In the 28 years since my diagnosis I've endured a great deal of disability. (See the list of my MS symptoms below.)
In 2009 I had to stop working due to a significant decline in my health. I started receiving Disability benefits shortly thereafter.
The stress of our insurmountable expenses and the reality that we are unable to provide for our daughter's needs makes everything we are dealing with so much harder.
As a result, my health continues to worsen.Disability Issues
Diagnosed with MS on my 20th birthday, there were no medications that had been approved to treat the disease and little was understood about what my future challenges would be.
What, how and when were frightening to consider and as a 20-year-old college student, speculating about my future was my full-time job.
Over the years, my symptoms have steadily increased. Here's an overview.
- Walking -- I need a cane (or a stick as I prefer to call it!) Being able to hang on to my husband or daughter's arm is one of the few ways I feel comfortable leaving the house. I often fall because of the weakness in my hip and leg, as well as intermittent foot drop.
- Standing -- Standing for lengths of time is also hard. Some days I can prepare dinner and other days I can't stand long enough to make a PB&J sandwich for my daughter's lunch.
- Dizziness/Fatigue -- On bad days these symptoms make it impossible to move around much. If I can unload the dishwasher or tidy the house it is a very good day and we do the happy dance around my house (metaphorically speaking).
- Lack of Balance -- This affects my ability to 'just stand there'. It sounds simple, but with the weakness in my legs and my overall lack of balance, it's like extreme sports for me.
- Incontinence -- Another great reason to stay inside is incontinence. I've had a non-working bladder since my 20s. Can't hold it, can't pee. So pads and catheterization have added significantly to my everyday coping. Dealing with bowel incontinence is unspeakably difficult, so I'll stop here! ;)
- Pain and sensory issues -- This is a list of different challenges that are intermittent. A few that I experience over a month are pain of spasticity, electrical sensations and numbness.
- Cognitive Challenges -- Processing information and recollecting things are both very difficult for me.
There's more to the disability symptoms story, but what I've mentioned covers the bulk of it.
Our financial situation is extremely compromised. We have difficulty paying for our basic expenses.
Because I am on SSDI and my husband works as a teacher with limited income, we are living paycheck to paycheck.
We have no savings and are saddled by expenses that go well beyond our monthly income.
These expenses include health-care expenses that aren't completely covered by our insurance (including vision, dental, assistive devices, copay for the numerous doctors I see, prescriptions I take and durable medical goods, like the catheters I need.
We are incurring debt to pay for food, utilities, home maintenance, our daughter's expenses.
In addition, we have enormous student loan payments for which we are only able to pay a minimal amount that covers interest and doesn't affect the principal.
As a result of these expenses that we are unable to cover, we are relying on credit cards and furthering our debts while just trying to get through a month. It's a never-ending cycle.Income Efforts
I've been getting SSDI since 2009. I receive $1500 a month for myself, and $1000 for my daughter Madeline, who is now 15.
Amy with hubby and daughter Madeline
My husband, who works full time as a college professor, has also taken on two additional jobs to help.
I have founded an organization for people with Multiple Sclerosis to learn about their own version of the disease, without being exposed to misinformation, too much information, or people who will only hinder the person with MS by creating anxiety.
I've received funding for that effort although my involvement has only been gratis. At some point I'm hoping it will provide some income that will help with my financial hardships and how I cope with my life.Specific Needs
With the funds to put towards our basic expenses and the ability to save for our family's future we would cut down on huge amounts of stress, and be better able to cope with the hardships that this progressive disease makes part of everyday functioning in our home.
Financial support for medical expenses, utilities, home repair, groceries, and support for our daughter would make a huge impact on our lives.
We hope that you will seriously consider supporting us as we work hard to endure what Multiple Sclerosis is having on our lives.