FWD:RSDS.org-article about person with RSD

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From: byrd45 (Original Message) Sent: 3/20/2006 11:33 AM
03/20/2006

Longtime animal rescuer hit by rare disease Pamela McLoughlin , Register Staff

BETHANY — Animal Control Officer Judy Rettig is known throughout the state as a dynamo when it comes to saving dogs, cats and other critters, once rescuing a 90-lb labrador retriever that she carried down a ladder on her own tiny frame and on another occasion scurrying through a pipe filled with rats and rushing water to free a trapped dog.

In September, Rettig joined the animal rescue cause in New Orleans and made the 27-hour drive back with a van full of homeless animals, just in time to start her Thanksgiving toiletry and food drive for the homeless in Greater New Haven.

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But in January, Rettig was stopped in her tracks by something more menacing than any vicious dog she’s ever faced.

Rettig has been laid up since then by the little-known syndrome Reflex Sympathetic Dystrophy, redefined by the medical community in the 1990s as Complex Regional Pain Syndrome, although RSD is still the common way to refer to the neurological disorder.

The syndrome typically develops after a sprain, fracture, other injury or surgery, most often in a limb or the spine, and is characterized by a burning pain disproportionate to the injury, discoloration in the affected area and swelling. The affected area is sensitive to the touch of something as light as a sheet or pant leg. In Rettig’s case, the vibration of loud music caused so much pain she had to leave a play.

Today, Rettig can’t move from the easy chair in her living room without help. A venture outside means a wheelchair ride, which Rettig admits still makes her self-conscious.

"I think someday I will walk again — I just don’t know when," Rettig said.

Women are affected more often than men, and diagnosed at a mean age of 42.

Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, headquartered in Milford, said while the medical community classifies the syndrome as "rare," meaning fewer than 200,000 cases exist, his organization believes more than 1 million people in the United States have it and have not been diagnosed.

"In adults, 80 percent of people who develop this don’t return to normal activities," Broatch said.

There is no curative treatment; it’s mainly about managing crippling pain through physical and occupational therapy, pain medication or alternative treatments such as acupuncture. Spinal chord stimulation, an invasive procedure, is sometimes an option for advanced cases. Most RSD sufferers also receive medication for depression as a matter of routine.

The association’s T-shirt slogan sends a strong message: "If hell were a clinical medical condition, it may look something like Reflex Sympathetic Dystrophy."

Rettig’s RSD likely stemmed from a broken leg in January 2005, when she slid on ice at the District Animal Control shelter in Woodbridge. After the break, a plate and pins were put in her leg, and she had to have a second surgery to remove the hardware and bury a nerve.

In spring 2005, Rettig returned to work on "light duty," a phrase that hadn’t been in her vocabulary. But she never healed 100 percent and went downhill as the year came to an end and the RSD progressed.

"I’m capable of ignoring pain, but this is challenging to me," said Rettig.

RSD, first identified in soldiers during the Civil War, can affect young children too, presenting the problem of adults not believing the degree of pain being expressed by the child. The RSDSA, one of many groups world-wide to address RSD sufferers, was formed in 1984 by two mothers in New Jersey whose children had the syndrome. The headquarters was moved to Milford because that’s where Broatch, a social worker who took over as executive director, lives.

In Rettig’s case, the pain is so extreme even the potent pain-killer oxycontin doesn’t touch it. Rettig’s doctor had an oversized boot made for her lower right leg, where the disease resides, so nothing will brush against it. That area of her skin is discolored and her RSD is showing signs of spreading, having moved up and into her knee. Every once in a while, her face contorts as a grabbing pain strikes her knee. Not only can it spread in the same area, but RSD also can jump from limb to limb, a fear that hangs in the back of Rettig’s mind.

It’s been so tough, so painful, that Rettig, the eternal optimist and sunny person, said she has thought many times before going to bed that she would not mind if she did not wake up again.

But she presses on, deriving hope from her strong faith in God, prayer and her loved ones. Rettig attends functions at Christ Episcopal Church, where she is a member, about four times a week. Once a week, the church’s pastors visit her at home and form a prayer circle, laying hands on her leg in an attempt to heal it. She attends a healing service at the church every Wednesday night.

"When medicine fails, I do believe in prayer," she said. "Most people don’t know that about me, but that’s where I pick up my strength."

Rettig also is able to keep going, she said, because of her dedicated soulmate, Christine Santoro, whom she said has been "the wind beneath my wings" for 30 years and now keeps her from falling helplessly into depression. Rettig said one of the highlights of her life these days is when Santoro pushes her wheelchair around Wal-Mart.

Rettig, who wants to return to work at the shelter, now being covered by two assistants, is even invoking the Pollyanna outlook that got her through many animal crises over the years: "There’s a side of me that says maybe there’s a reason for this."

Rettig said this all could be meant to slow her down. Or maybe while sidelined physically, she’s supposed to write a book about all her animal adventures. Maybe, Rettig said, God wants her to become a voice for RSD to raise awareness and funds for research about the life-altering syndrome she didn’t know existed until it hit home.

Even with those comforting scenarios, Rettig can never quite get her mind off all the needy people she wants to help, such as families being assisted by AIDS Project New Haven, one of her pet causes. She also is not forgetting all the four-legged, furry types whose presence she once described so warmly as making a person feel like they have Christmas lights strung around their heart.

"I worry about animals all day long; I’m obsessed," Rettig said.

To learn more about RSD, go to www.rsds.org.