A Body filled with pain/ life filled with hope (rsd story)

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A body filled with pain, a life filled with hope Sullivan cannot walk

but works full-time and coaches basketball and track

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Special to The News Journal/THOMAS M. NUTTER

Sullivan, a school retention specialist, has a nerve disorder that

first struck her left leg and left her unable to walk. It's spread to her

right leg.

<http://www.delawareonline.com/apps/pbcs.dll/section?category=CROSSROADS>

*Players say attitude is infectious*

Mount Pleasant High sophomores Rob Nicholson and Avery Sherrod believe their

basketball coach makes them want to succeed and work hard.

Their coach is Sullivan, who suffers from the nerve disorder reflex

sympathetic dystrophy, which prevents her from walking.

The Green Knights junior varsity went 10-9 this season under Sullivan. The

players said each day was a learning experience. " She is probably the best

coach I've had, " said Nicholson, a 5-foot-10 guard. " We kind of wanted to

win for her. She has so much courage. You never really want to complain

because she can't really walk. She is never really down and out. "

Sherrod said Sullivan stresses discipline, but is fair and cares about her

players.

" Coach wants us to know what she is feeling, " said Sherrod, a 6-2 forward.

" When we are running sprints or working very hard in practice, you know she

wants to be out there with you doing the same drills. It's fun and rewarding

to play for her. She is not only the coach, but like the mom of the team. "

Nicholson and Sherrod said it didn't take long to get comfortable playing

for a female coach.

" At first, I thought, 'a woman coach,' but that didn't last long at all

after I realized how much she knew about basketball, " Sherrod said. " She

knows a lot. "

Said Nicholson: " It didn't matter to me. I don't think it was hard for

anyone to play for coach Sullivan. "

*-- JACK IRELAND*

*ABOUT RSD*

Reflex sympathetic dystrophy is caused by an injury to a nerve or tissue.

Patients typically deal with constant pain, lack of sleep and disruption of

their lifestyle.

To avoid pain, patients may reduce usage of the injured area, which in turn

reduces blood flow, and that can lead to swelling. Waste products build up

in the blood; blood vessels start to leak; scar tissue builds up, leading to

nerve encroachment and decreased range of motion.

Sullivan's neurological physician, Dr. J. Schwartzman, is

studying high doses of an anesthetic called ketamine. Schwartzman, chairman

of neurology at the MCP Hahnemann Medical College in Philadelphia, is

conducting trials in Germany for RSD patients.

According to his Web site, " We give patients very high doses of ketamine to

make them comatose for five days, and they wake up with no pain. It is a

very complicated problem. Pain causes changes in the brain itself. After

you've had RSD, your brain has changed.

" Once you stop the pain, you can retrain the brain to reverse many of these

changes. If you have enough pain, long enough, it may cause structural

changes in the spinal cord. "

Schwartzman reports that another possible treatment is thalidomide, a

sedative known for tragic side effects on unborn children in the 1960s. It's

currently in two clinical trials.

By JACK IRELAND

The News Journal

03/16/2006

Sullivan just keeps moving, even though a rare nerve disorder has left

her unable to walk.

Sullivan, of Wilmington, has for 10 years battled the disorder, known as

reflex sympathetic dystrophy, in her left foot and leg. She is a full-time

retention specialist for the Red Clay and wine School Districts and

coaches two sports at Mount Pleasant High, her alma mater.

She is the junior varsity boys basketball coach and assists varsity coach

Jim . She also is an assistant boys and girls track coach, working

with the shot put and discus throwers. She even spent a year as assistant

football coach.

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Sullivan, 40, gets around with a Roll-a-Bout walker, a wheeled device

invented 12 years ago by Rod Accetta of Dover. She works out of offices at

Mount Pleasant and at her home.

" It's amazing, because I've never seen down because of her leg, " said

, her friend since middle school. " I am as close to her as anybody,

and even when she's having a tough day, she keeps plugging.

" I don't tell her enough, but she is an inspiration to me. We all like to

think we could be that strong, but it's not easy. "

Sullivan's right leg is now affected by the disorder. Her trials have

included back surgery in 2000 and having a benign lump removed from her

breast in December 2005.

" I keep busy and try to set a good example for the kids I work with and

coach, " said Sullivan, who excelled as a basketball and softball player at

Mount Pleasant and Wilmington College. " I'm a person who happens to have

RSD. I've talked to some people who have RSD, and their whole life is the

disease.

" I feel for them, but I don't think you can be very successful if you let it

consume you. I try to live my life. I have got to live my life the best I

can. "

Sullivan said she deals with pain on a daily basis. At its worst, her foot

and leg would swell and turn purple.

" I really don't take medicines, " she said. " Every once in a while I'll take

an aspirin, especially in the winter when it's cold. That's when I feel the

pain more. I have a prescription for sleeping pills, but I don't use them

much. "

Sullivan has been treated by several specialists over the years. The latest

is Dr. Schwartzman, who has researched RSD for more than 30 years. He

is a professor and chairman of neurology at the MCP Hahnemann Medical

College in Philadelphia.

" He has been involved in this [a ketamine drug] study in Germany where they

put RSD patients in a coma for five days with the hope the nervous system

will reset itself, " Sullivan said. " I think something like 36 patients were

involved. I was on the list hoping to go over there. Now I understand the

FDA has put a hold on it. "

Sullivan's smile and upbeat attitude remain the same from before she

suffered an injury to her left foot and toe in June 1996 that triggered the

RSD. The freak injury occurred when she tripped while stepping off an

elevator while working at Chase Manhattan Bank.

" For people who know and what she is about, there is no handicap with

her, " said Randy Holmes, the Mount Pleasant track and football coach. " She

has more energy and dedication than most people I know. She has a whole

different outlook on what life is about.

" When it comes to coaching and sports strategy, there is nobody better.

She's not out there just to be out there. She'll take the time to learn the

sport. I remember I was looking for another person to help one year and

said, 'I could do football.' I really believe she could, but it was a little

more difficult because you have to be able to demonstrate on the field.

" Jimmy [] wouldn't have her sitting right there next to him on the

bench if she wasn't qualified. I picked because it's so hard to keep

people year to year and depend on them. Personally, I probably trust her the

most in the world next to my mother. ... She's a great friend and person. "

After working as an assistant coach with the Wilmington women's basketball

team before her illness, she guided Sanford to the girls basketball state

tournament semifinals as a 30-year-

old head coach. When her disease progressed, she had to leave her job at

Chase and the Sanford coaching position.

" She knows a lot about basketball, " said. " There are times that we

might disagree about a certain strategy, but it's not like she is arguing

with me. At the end of games, she's always in my ear.

" We're so close, it's like brother and sister. I think we have one of the

closest relationship for a coach and assistant coach in the state. "

said he marvels at Sullivan's courage and prays for her complete

recovery.

" As her friend, I want her to be better and walk normally again, "

said. " However, I'll tell you this, if she could walk that wouldn't be all

she would do. It wouldn't be like, 'OK, I can walk and I don't want to be

getting hurt again.' She would continue to do what she does now and more to

help others. "

and other friends often kid Sullivan to make her feel right at home.

" One thing you have got to mention is that is older than me, "

said. " turned 40 already [March 12]. I don't turn 40 until September.

will lie about her age. We can't let her get away with that. "

*Contact Jack Ireland at 324-2808 or jireland@....*

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What would life be if we had no courage to attempt anything?

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