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57 Year Old Woman With Brown Séquard Syndrome Seeks Grant Money

by Sylvia Grimes
(Beaver Falls, PA, USA)

I am a 57-year-old woman who became paralyzed from the waist down on July 31, 2005. I was diagnosed with a rare spinal cord infarct and transverse myelitis.

Just recently I went to a doctor who specializes in pain and rehabilitation and was told as soon as he examined me that I had an underlying rare disease known as Brown Séquard Syndrome.

He said he felt I was maybe misdiagnosed. I am permanently disabled and unable to work because of the spasmodic, cold and disfigured left leg.

My right leg cannot feel hot or cold and only has a small sense of touch due to the Brown Séquard Syndrome, which is caused by ischemic (blood vessels being pressed on).

I have been in therapy for 5 years and can walk, but only for short distances and then I must elevate the cold left leg that is total atrophied from the knee down.

My foot is disfigured I am still paralyzed in the trunk. I must catheterize 3-4 times a day and wear diapers.

I have been married to a wonderful man for 34 years on December 11, 2010. He is a very hard worker and due to the economic situation he had 7 W-2s last year.

The year before he was self-employed for ½ of the year and then laid off from his new job, which meant his unemployment was not enough to even pay our rent.

We are not eligible for food stamps and we have a son who is in his fourth year at Penn State College, State College, PA.

We had to take out two Parent Plus loans to keep our son in college, one in 2009 for $5000 and one in 2010 for $10,000.

We are very proud of our son. He is doing well in college and receiving good grades. He will be the first generation college graduate in our family.

With my disease I go into depression. It is one of the many symptoms of Brown Séquard Syndrome.

I feel hopeless that I am not able to work to help my family financially. I worked from the age of 14 years old till I was 44 years old.

I worked in restaurants as a server so my Social Security Benefits are only $356 a month.

I want to work but it seems impossible with therapy three times a week and doctor appointments and having to catheterize and elevate my leg.

I am hoping that there may be a grant that will help my family as a whole. I know that we will not be able to pay the two Parent Plus Loans when they become due. They are actually growing with interest.

We have managed to barely keep our head above water and have kept our credit in good standing.

Since we do not get Food Stamps there are times we cannot even buy groceries.

I am hoping for a grant that will help us to be able to live a worry free life and perhaps help with the Parent Plus Loans.

This would be a relief for me and help my depression and worrying. My husband is working now and cooks and takes care of me. It is really too much for him. I want to be able to remove some of the stress off of his shoulders.

I want to thank you very sincerely and truthfully for reading about my life and my situation our family is in because of my disability.

I truly am hoping that there will be a government grant that will help my family as a whole.

Sylvia Grimes, Beaver Falls, PA

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Jan 04, 2016
Game changer
by: Robert

Brown Sequard Syndrome is a life-altering phenomenon. I am a 58 year old man who developed it following rupture of a dural cyst in the thoracic area of my spinal cord. After 8 years -- and a failed laminectomy -- I press on. The medical community and insurance companies don't care about your subsequent quality of life. In their opinion, you are 'just another patient.' Yet each day, 24/7 you must struggle on to make the best of what is realistically a crappy physical existence. Unfortunately, besides the BSS folks like us must also deal with accompanying complications, which are arguably just as debilitating. God bless you Sylvia for continuing to 'fight the fight.'

Jun 13, 2011
I have it too.
by: Anonymous

I have been looking for someone who has this awful BSS. I thought I was the only one who had it. I continue to teach grade 4, enjoy my 5 grandchildren, dance and powwow. It took me long to accept this syndrome.

Jan 25, 2011
Really getting the help?
by: Robert Dorsey

It is well deserved...

We are Robert and Wandoria, of Dover Delaware.

I am a 100% service connected combat veteran, from a pass in historic nature.

We read the Grimes story, and hope she is, or has been seriously considered.

She and her husband, have been pillars of the community for years, and good people that others respect.

Truly we hope that what the Grimes family needs, is granted, in that, if anyone needs true help, is this family.

Thank you

Robert & Wandoria Dorsey

Nov 21, 2010
Your Post
by: Anonymous

Have you contacted local churches? Many have "food pantries" so that you can at least know that you have food. There are probably more local charities now since it's the holiday season. My prayers are with you and your family. Have you applied for grants for your son through FAFSA? It's a Federal grant program. I hope this helps.

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