Sunday, February 26, 2006

Pandolfo's choice to step aside was best for everyone

NorthJournal, originally uploaded by rsdscrpsnews.

Pandolfo's choice to step aside was best for everyone

By Jerry Clark, Sports Editor
Thursday, February 23, 2006

Former North Allegheny hockey head coach Tom Pandolfo has been under some unjust criticism since he resigned from his position earlier this month. Hockey Web sites and fans who have labeled him a quitter or say he was pushed out by North Allegheny parents are grossly misinformed.

Pandolfo didn't quit on his team, he made the best decision he could to help their progress.

Pandolfo suffers from a condition known as reflexive sympathetic dystrophy (RSD), a chronic progressive neurological condition that affects skin, muscles, joints and bones. The syndrome often develops in an injured limb like a broken bone, but can also be caused by a minor injury as small as a slight sprain. The condition has forced Pandolfo into the emergency room 26 times in the past eight months.

The illness flares up a lot of time in the middle of the night and gets so severe Pandolfo has needed to call family members to give him a ride because the pain is so unbearable, he can't drive. There is a laundry list of symptoms that go along with the disease including burning pain, extreme sensitivity to touch, joint pain, muscle spasms, weakness, migraine headaches and fatigue which can cause stabbing pain that disrupts sleep.

There is no cure for RSD, so to combat the pain, Pandolfo was taking a heavy dose of medication. Pandolfo decided to stop taking the medicine and rather than ween himself off the medication as his doctor advised him to, he stopped cold turkey. By stopping so abruptly, Pandolfo began to suffer side effects -- mood shifts, depression and dizziness. These side effects made it difficult for Pandolfo to convey a positive attitude during practice and games, and led Pandolfo to believe he was not connecting with the kids.

He did a good job of concealing his agony but finally decided he had to gain control of the situation which ultimately meant stepping away from one of his favorite things, coaching hockey.

I've known Pandolfo for three years and conversed with him on a weekly basis during that time. He is very passionate about coaching. He loves it and aside from family and his business, it's the next most important thing.

He restored a swagger in North Allegheny hockey that had been missing for a while and made the Tigers a respected and competitive organization.

"My leaving had nothing to do with the parents at North Allegheny," Pandolfo said. "The condition became so tough because it prevented me from being positive with my kids. It was hard to leave. I loved it at North Allegheny. They are class people up there.

"I want the kids to be able to get on with the season. They are resilient and they look good."

Pandolfo wanted to be fair to the organization and admits he could have handled the situation better, but the condition he was in after stopping the medication prevented him from doing so.

When he first told me he was stepping aside, I was stunned. I honestly thought he'd be there for a long time, and I know the decision was not an easy one for him to make. But as he always has done, he did what was best for his kids, even if it meant not coaching them.

Pandolfo will be missed, but one's health must come first. He said he would like to coach again someday, I just hope that it's for a team I can cover.

I wish him the best and hope he not only gets healthy, but that he can resume coaching again some day because I know how much he enjoys it. Pandolfo has always been a class act as far as I am concerned.

Win, lose or draw he always showed me the same respect and I will miss talking hockey with him each week. Even though his decision is the right one, the PIHL and North Allegheny will not be the same without Pandolfo being involved.

Jerry Clark can be reached at

For the Original Article Online Click Here


Thursday, February 23, 2006

New U.S. Patent 6,982,089 Issued - Describing a Novel Biotechnology Approach to Alzheimer's Disease

PRWeb, originally uploaded by rsdscrpsnews.

New U.S. Patent 6,982,089 Issued - Describing a Novel Biotechnology Approach to Alzheimer's Disease

New U.S. patent 6,982,089, describing perispinal administration of biological TNF-alpha modulators for certain neurological disorders, issued on January 3, 2006, awarded to Edward Tobinick, MD, Los Angeles, California.

Los Angeles, CA (PRWEB) February 20, 2006 -- U.S. patent 6,982,089, awarded to Edward Tobinick, MD, issued on January 3, 2006. This new patent describes novel methods for Alzheimer's Disease using molecules developed through recombinant DNA technology. The patented methods involve the perispinal use of certain biologic inhibitors of TNF-alpha, including etanercept, certolizumab pegol (CDP 870), and others, for clinical disorders in which neurological inflammation is thought to play a significant role.

TNF-alpha is a proinflammatory cytokine, a protein which is involved in the initiation and amplification of the immune response which causes inflammation in a variety of organ systems, including the brain. This patent also includes claims involving the perispinal use of certain biologic TNF inhibitors, including adalimumab and certolizumab pegol, for disorders involving neurologic pain and inflammation, including post-herpetic neuralgia, reflex sympathetic dystrophy, other forms of neuropathic pain, fibromyalgia, low back pain, and vertebral disc disease, all clinical conditions with unmet medical need.

Note: Edward Tobinick, MD is the Medical Director of Institute Research Associates, a [private Medical Group, Inc., 100 UCLA Medical Plaza, Suites 205-210, Los Angeles, California 90095, (310) 824-6191. This press release describes patent claims and should not be interpreted as a treatment recommendation, which it is not.

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Apartment renters in tough spot

HeraldToday, originally uploaded by rsdscrpsnews.

Posted on Sun, Feb. 19, 2006

Apartment renters in tough spot

Tenants in dilemma as apartments go condo

Herald Staff Writer

MANATEE - In the past few months, the nationwide condo-conversion trend has reached a crescendo in Manatee County. Almost every week it seems another rental property in the county announces it is going condo.

While those interested in owning their own home now have more affordable opportunities in the form of conversions, others are put in a predicament and don't know where to go.

According to Triad Research & Consulting President Michael Slater, a Tampa-based company that tracks losses in rental inventory, Manatee lost approximately 2,000 of its 9,000 rental units in 2005. Sarasota County has lost upward of 40 percent of its rental inventory in the past 24 months, he said.

These changes have affected not only potential renters but those who often helped them find properties to fit their needs, like Apartment Hunters.

Employees of Apartment Hunters, a company that specializes in providing free assistance to those looking for rental properties, have found it increasingly difficult to match prospective tenants with available properties that suit their needs in all areas of the Tampa Bay market.

"People come in saying, 'Please find a place that won't be converting. We don't want to move anymore,' " said Mark Berry, manager at Apartment Hunters.

Berry said they are losing inventory to conversions and the losses have changed the dynamic of Apartment Hunters' business.

"We are working with the individual investor when, in the past, we never did. We worked with large communities," Berry said.

According to the Manatee County Property Appraisers Office, there are 132 rental communities in Manatee County with more than 10 units.

When large communities like the 352-unit Hampton Bay apartment complex and the 252-unit Mainstreet are converted to condominiums, the area's available rental inventory is quickly depleted, leaving some wondering where to go next.

"I predict we'll see 3,000 new condo units this year and at least 1,200 of those will be conversions," said Dale Friedley of the Manatee County Property Appraisers Office.

Waiting to hear

'Scared to death and livid'

As signs went up proclaiming the new name and new intentions for the development formerly known as Hampton Bay, the Lewandoski family waited for the other shoe to drop. Living paycheck to paycheck wasn't always a way of life for the family of four - five if Lucinda, the black labrador who thinks she's human, is included.

Their 4,000-plus-square-foot home outside Chicago seems a lifetime away, though it has been less than a year since they lived there. Gone are the days of making $150,000 annually and feeling secure.

When Trish and John Lewandoski both lost their jobs at Alpha Bakery in Chicago within five minutes of one another, they knew change was on the horizon. But they never could have foreseen what a life in Bradenton would mean or how the booming real estate market would leave them feeling scared and displaced.

"I am between scared to death and livid," said Trish Lewandoski.

When The Herald ran a story detailing the Bradenton apartment complex's plans to go condo, most residents had already received notice of pending conversion, but not the Lewandoski family.

Trish Lewandoski said she asked whether the complex was being converted to condos and was told by the staff that they didn't know. She even asked a week before the letters went out.

Ashley Lewandoski is much older than her 17 years. The polite and poised teenager deals with pain adults more than twice her age can't fathom. She battles six auto-immune diseases, including two forms of lupus.

While the Lewandoskis are dealing with their layoffs and struggles to find new employment, Ashley has become homebound, requiring visits from nurses monthly as well as around-the-clock care.

"This is a full-time job. It's not a paying job but it's my child," Trish Lewandoski said.

John Lewandoski works hard for a local bakery company but between insurance changes and trying to catch up from the period of unemployment, paying bills is often a challenge.

"That one paycheck barely makes ends meet. Well, it doesn't make ends meet, actually," Trish Lewandoski said.

Medical expenses combined with Bradenton's high rent rates and the cost of day-to-day life makes the idea of saving money not much more than just that: an idea.

A month after MK Equity Corp., the Chicago-based company purchasing the complex, sent letters to some of their neighbors, the Lewandoskis finally received a letter stating their apartment is one of the 64 that is not for sale at this time. "Semantically speaking, the letter states 'at this time.' It doesn't give us any piece of mind," Trish Lewandoski said.

Stress exacerbates lupus flare-ups as well as Ashley's Reflex Sympathetic Dystrophy. The disease is attacking the muscles in her legs, which is both painful and frightening.

The family is just one of many who feel displaced and disillusioned by the trend of apartments turning into condos. Renters live in fear of losing the place they have come to call home.

Common predicament

An ailing mother brought Bill Johnson to Manatee County about 10 years ago. Now he calls the area home but finds himself facing a predicament that is becoming extremely common. Johnson's Harbour Pointe apartment is going condo.

"I expect to be finding another rental in the area," Johnson said.

He knows his battle won't be easy when his lease expires this summer. "Just driving around on a day-to-day basis, you see more and more apartments going condo," he said.

Johnson isn't interested in renting an apartment-turned-condo from an investor. "Let's face it, contracts don't mean what they used to years ago," Johnson said.

He also expects rent will go through the roof as rentals become more and more scarce. "Like anything else, it's supply and demand," Johnson said.

Johnson doesn't want to leave the area where his two stepdaughters live but doesn't think it's the right time to buy. "I believe that sooner or later the bottom is going to drop out," he said.

Johnson said he can't justify paying the outlandish amount of money for a property as the market is slowing. He also is astonished at some of the properties making the conversion to condos.

"Specific properties that aren't that attractive are selling at high prices," he said. "The market is so crazy right now that my gut feeling is somewhere in the next few years this market is going to change completely and it will probably spiral downward."

Tenant to owner?

Both Palm Cove, formerly Hampton Bay, and Sands Bay, formerly Harbour Pointe, are in the process of renovations, and sales offices are open. Wagner Realty is handling the sales of units in both complexes. Sales Manager Bill Davidson is excited about the changes on the horizon but hopes enhanced offers for current tenants may help those who want to become homeowners.

"Everything has its pluses and minuses, and condo conversion is no different," he said.

In his experience in the condo conversion market, Davidson has found that tenants only make up about 5 percent of buyers.

"There's a reason people are renting. Either they don't have the down payment or they don't have the credit established," said Michelle Daniels, mortgage broker with Intercoastal Lending Group.

When Mainstreet announced its intentions to go condo, the sales team marketed the change as an opportunity for current residents to become homeowners. Letters stating that mortgage payments would be comparable to what they were paying in rent and in some cases less were circulated.

The examples used in the letters were based on interest-only adjustable rate mortgages. In the development, the 678-square-foot, one-bedroom units are listed at $181,900. The units had been renting for $767 a month. For those Mainstreet residents who are able to put 11 percent down and who prefer the security of a fixed rate, purchasing a unit would cost them about $1,300 a month, Daniels said. Daniels ran the numbers at 6 percent interest with zero points.

Palm Cove is selling its 660-square-feet, one-bedroom units for $123,900. Rent for those units starts at $660. Using the same 11 percent down, with a fixed rate of 6 percent and zero points, prospective buyers can expect to pay about $920 a month, including condominium fees. Three-bedroom, two-bath units in Palm Cove start at $229,900.

The letter Mainstreet residents received detailed how much it would cost to purchase their units based on interest-only adjustable rate mortgages, something Daniels doesn't recommend in the current market.

"A year ago if you said, 'should I do an interest-only ARM?' I would've said yes because property values were escalating so quickly," Daniels said.

Lack of supply and high demand for rental properties lead to rent increases, said Berry.

Investors have already shown interest in many of the properties, and many of them will then turn the units back into rentals using property management companies. In many cases, Davidson said, the units will receive face-lifts before they re-enter the rental inventory.

Will market sustain this?

Just how long the condo conversion phase will continue is uncertain. When the conversion trend first took off, it was when there was a shortage of properties on the market and an influx of buyers willing to pay prices considerably higher than the appraised value of the home or condo. With interest rates climbing, more available inventory on the market and the acceleration of home prices showing little sign of slowing down, conversions seem to be gaining momentum, not losing it. Some think more competitive and realistic house prices may turn the tide.

"Now you can find a concrete block house for $229,900 without paying a condo association fee," Daniels said.

While that is good news for those in the position to buy, tenants like the Lewandoskis and Johnson are left wondering if they will encounter the same situation in the next rental complex where they settle.

"How do we know it won't happen again?" Trish Lewandoski asked.

Click Here For Original Article Online

Worker's comp cheater earns year's jail time

Worker's comp cheater earns year's jail time
Videotape evidence helped sink defendant
By Malaika Fraley, STAFF WRITER

Former San Mateo County collections worker Yolanda Dobkins was sentenced to a year in jail Tuesday for misrepresenting an injury in order to collect worker's compensation.

Dobkins' family members broke out in tears after Judge Craig Parsons denied home detention or probation in lieu of jail time for the 54-year-old San Francisco resident. Dobkins also received five years supervised probation and was ordered to pay $67,000 to cover costs for the investigation that led to her conviction.

A jury convicted Dobkins in November of four counts of insurance fraud and attempted perjury. She was acquitted of five other related charges.

Dobkins had worked as a full-time county collections officer since 1998 when, in February 2001, she filed a workers' compensation claim for bilateral carpal tunnel syndrome. Dobkins, who has had multiple surgeries on both arms and suffers from reflex sympathetic dystrophy syndrome, told the county she couldn't work because simple tasks like shaking hands had become unbearable.

Prosecutor Kathryn Alberti said Dobkins exaggerated the seriousness of her injury to collect $24,000 in state disability payments and $10,000 in worker's compensation benefits.

The county — which is self-insured and pays worker's compensation claims out of its general fund — investigated the claim after a secretary spotted Dobkins prying open an elevator door after a meeting at which she said she had limited hand function.

Soon, independent investigators began secretly videotaping Dobkins and obtained footage of her doing tasks she said were unbearable, such as lifting heavy objects and washing her car. Dobkins was slapped with criminal charges after she claimed to have not done such tasks at a deposition with investigators who had seen the footage.

Her attorney, Kathleen McCasey, asked for a new trial on Tuesday, based on what she called vindictive behavior by county employees who investigated her client and ambiguity by the person whose questions led to attempted perjury. McCasey added that the jury should have been allowed to hear about Dobkins' additional surgeries.

Judge Parsons rejected McCasey's argument and said that he considered sentencing Dobkins to the maximum term of six years in prison because of her failure to admit any wrongdoing to this day.

"The defendant expresses no remorse. She continues to deny responsibility and, most importantly, Ms. Dobkins continues to portray herself as a victim rather than someone who ... lied under oath and committed a serious felony," Parsons said.

Contact staff writer Malaika Fraley at (650) 306-2425 or by e-mail at

Click Here For Original Article Online


Wednesday, February 22, 2006

More Reports on new RSDS/CRPS Article

Yahoo News



Nerve Damage May Underlie Mystery Pain Syndrome

RedOrbit, originally uploaded by rsdscrpsnews.

Nerve Damage May Underlie Mystery Pain Syndrome

NEW YORK (Reuters Health) - The findings from a new study lend support to the hypothesis that the so-called "complex regional pain syndrome" is a bona fide neurologic disorder caused by persistent nerve injury affecting small fibers that can feel pain.

Complex regional pain syndrome involves post-traumatic limb pain and other disturbances that continue even though the inciting injury seems to have healed. The cause of the symptoms is unknown and because there are few objective findings, diagnosis and treatment is difficult. Some have even questioned whether complex regional pain syndrome has a real biologic basis or is a psychosomatic illness.

In the current study, reported in the journal Pain, Dr. Anne Louise Oaklander and colleagues, from Harvard Medical School in Boston, performed sensory testing and quantitative nerve assessment of affected and unaffected sites on 18 patients with complex regional pain syndrome.

Seven subjects without complex regional pain syndrome, but with similar symptoms served as additional controls.

The complex regional pain syndrome patients had classic histories and symptoms for the disorder. Unexpectedly, the researchers found that complex regional pain syndrome onset was often associated with medical procedures.

Sensory testing showed that sites affected by complex regional pain syndrome were highly sensitive to mechanically- and heat-induced pain and also showed decreased nerve fiber densities.

By contrast, control subjects did not display these reductions at their pain sites, "suggesting that pain, disuse, or prior surgeries alone do not explain complex regional pain syndrome-associated neurite losses," the authors state.

"The fact that complex regional pain syndrome now has an identified cause takes it out of the realm of so-called 'psychosomatic illness'," Oaklander said in a statement.

"Our results suggest that complex regional pain syndrome patients should be evaluated by neurologists who specialize in nerve injury and be treated with medications or procedures that have proven effective for other nerve-injury pain syndromes."

SOURCE: Pain, February 2006.

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Monday, February 20, 2006

WILL OF IRON, originally uploaded by rsdscrpsnews.

19 January 2006
By Clinton Manning

FORMER foundry worker Jeff Smalley has won almost £1.5million compensation after a horror accident - but he would give back every penny to hold his wife again.

The 62-year-old has to have his left arm amputated after an explosion at work. The tragedy struck 25 years after another accident led to him losing his right arm.

He said: "It's a lot of money but I'd give it all back in an instant if I could have my arms back."

His wife Linda said the worst thing was not being able to have a cuddle with her husband.

"We always used to hold hands when we went out for a walk," she said. "It's really awful not being able to put your arms around one another."

Jeff was working for James Maude & Co in Mansfield, Notts, when a sandblasting machine exploded in November 2001.

He was blown off his feet, broke his leg and ripped his left shoulder apart. Doctors tried surgery to repair the damage but it didn't work. Jeff developed chronic regional pain syndrome which meant his arm and fingers are hyper sensitive. He is due to have his left arm amputated next week. "He's in that much pain the operation will be a blessed relief in many ways," said Linda, who quit her job at Asda to look after Jeff.

"He can't use it and he's taking about 16 tablets a day and he has morphine patches which he puts under his arm. Some days he's so drugged up he doesn't know where he is or - if he's lucky - he just sleeps."

Losing the use of his arms has also affected Jeff's balance - but he hasn't lost his sense of humour. He says: "I've fallen down twice. Once I broke my nose and split my head open so badly it needed 10 stitches.

"I can't put my hands out to break the fall so the first thing that hits the floor is my hooter.

"I looked as if I'd got a tomato stuck on the end of it." For Jeff the pain is made worse by not being able to play with his four grandchildren. After his first accident in 1980, he taught himself to paint with his left hand and to ride a mountain bike, cycling 200 miles a week to keep fit.

And shortly before the accident he started taking the eldest of his four grandchildren out for a ride. He said: "The eldest, Nathan, started to come out with me at weekends. I was looking forward to getting all of them out on the bikes.

"But now I can't cycle anymore and I've put on about three stone." His painting, too, will be impossible after next week's surgery.

In Jeff's first accident, in 1980, he dislocated his elbow and shoulder in a fall. Although a relatively minor injury he developed the infection CRPS. His arm was amputated five years later and he settled out of court with the company for £36,000.

Although the firm - which has since gone bust - admitted liability for the blast it took a four-year fight by the Amicus trade union and its legal firm Thompsons to win the insurance pay-out. "The union's been absolutely brilliant," said Jeff, "and Peter Magee at Thompsons. I don't know what we'd have done without their help."

Amicus legal services director Georgina Hirsch said: "This is an absolutely tragic case.

"No amount of money will ever make up for Mr Smalley's loss. But the outcome highlights the support trades unions can give to members injured at work."

'No amount of money can make up for this loss

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Procedure uses phenol, Botox to alleviate pain

GwinnettDailyPost, originally uploaded by rsdscrpsnews.

Procedure uses phenol, Botox to alleviate pain


By John Davis
Morris News Service

LUBBOCK, Texas — About two minutes after the injection, her hand could move again.

The pain was gone.

A big smile crossed 38-year-old Noreen Pfund’s face as she opened and closed her hand, then put her arm above her head.
“Oh my gosh,” she said as she lay on a table in an operating room at University Medical Center.

These may seem like simple tasks, but pain caused by reflex sympathetic dystrophy stopped the Phoenix real estate agent from performing them and ended her career as a golf professional.
Chronic neurological syndrome is also known as complex regional pain syndrome. Patients experience severe burning pain, tissue swelling and extreme sensitivity to touch, according to
Stopping the pain stumped doctors at the Mayo Clinic in Scottsdale, Ariz., Pfund said, and they suggested she come to Lubbock for treatment Sept. 27.

After receiving a treatment developed by Dr. Gabor Racz, Pfund can swing her golf clubs again.

“It is amazing,” Pfund said. “I’ve had a number of procedures over the past eight years. His are the only ones that work. He uses a certain medicine that other doctors are not willing to do.”
Nine years ago, when she was 29, Pfund came down with a bad case of influenza.

For some reason, the flu caused pain in her joints and pain that doctors originally diagnosed as fibromyalgia. Reflex sympathetic dystrophy usually is caused by injuries, she said.
Her active lifestyle came to a screeching halt.

“It was tough,” Pfund said. “I couldn’t drive. I couldn’t do anything. I would go in to a doctor I had here every Tuesday and Thursday, and he would give me (nerve) blocks, but it was just temporary. It would give me relief for eight or 10 hours. The doctor I had finally gave up on me.”

Golf was Pfund’s passion, and she was told she’d never do it again. She’d never get the strength back in her hand. She’d never lift a coffee cup again.

“I’m doing all of that,” she said.

Weeks after her trip to Lubbock for the nerve block procedure, in which medications are injected into or around a nerve to block pain, Pfund hit the links and shot an 82.

Her Lubbock doctor is professor emeritus of the anesthesiology department and director at the International Pain Institute at Texas Tech University Health Sciences Center. Racz said he performed a procedure called a long-lasting stellate ganglion block.
He injected Botox, a chemical used to relax muscles, to allow Pfund’s hand to move, he said. Her disease had caused the muscles in her hand to contract.

He used a 2.8 percent solution of phenol — a caustic chemical commonly used for preserving cadavers. Phenol kills nerve cells that send unnecessary pain signals to the brain, he said.

About 25 years ago, Racz said, he discovered that a 2.8 percent solution delivered to the site of the seventh cervical vertebrae can help end pain in the face, neck and arm when medicines didn’t work.

Prior to this, doctors would deliver the nerve block to the a site near the sixth cervical vertebrae, which isn’t as effective, Racz said.

Racz said relief lasts months, years or a lifetime.

Prior to this, doctors would deliver the nerve block to the sixth cervical vertebrae, which isn’t as effective, Racz said.
Then came pulse radio frequency, where radio waves are used to heat but not kill nerves sending pain signals, he said.

Though safer than phenol, Medicare and insurance companies declared the radio procedure as investigational, Racz said, and would no longer pay for it.

However, through practice, he produced more favorable outcomes using the phenol treatment than with the pulse radio frequency.
He uses fluoroscopic X-ray to guide the needle during the procedure so that the needle doesn't go into the esophagus or hit an artery.

“It is not a procedure that should be attempted by anybody who is not trained in the specific technique,” Racz said. “It’s kind of like taking a hammer and hitting a diamond. In the hand of a diamond specialist it works, but someone else may pulverize it.”

Racz said the 2.8 percent solution of phenol in the nerve block seems to be the right concentration to give months of relief. Many patients can live pain-free lives after the procedure is performed.
Dr. Rinoo Shah, an assistant professor in the pain division of TTUHSC’s department of anesthesiology and co-director of pain services, also has been trained to perform the procedure.

Though using nerve blocks to stop pain has been around since the early to mid-1900s, he said, many physicians prefer to use medications rather than perform risky procedures.

He said the new technique can put an end to the constant pain for patients with reflex sympathetic dystrophy syndrome because medications don’t help stop the pain.

“In the proper hands, this is an effective tool that can be done safely,” Shah said.

The procedure is not without risks, Shah said. If done incorrectly, doctors could interrupt blood supply to the brain or risk the needle going into the esophagus or the spinal chord where a nerve could get damaged.

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Friday, February 17, 2006

Neurologist to address dystrophy support group

February 17, 2006

Neurologist to address dystrophy support group

Staff Report

Dr. Alyn Benezette, a local neurologist, will be the guest speaker today at a meeting of the Northeast Coast of Florida Reflex Sympathetic Dystrophy Support Group.

Benezette plans to address the treatment and management of Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome, a rare neurologic syndrome often characterized by disabling pain.

The meeting begins at 5 p.m. in the cafeteria annex room at Ormond Memorial Hospital, 875 Sterthaus Ave., Ormond Beach.

For more information, call (386) 673-0871.

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Poca woman says Ford to blame for defective airbag

The West Virginia Record, originally uploaded by rsdscrpsnews.

Poca woman says Ford to blame for defective airbag

Thursday, February 16, 2006

By Chris Dickerson - Winfield Bureau

WINFIELD - A Poca woman says Ford Motor Company should have known about a defective air bag that contributed to her injuries in a 2004 auto accident.

Susan V. McBride filed the lawsuit Feb. 8 in Kanawha Circuit Court.

In the suit, McBride says she owned a 2002 Mercury Cougar, which she bought new, on May 1. 2004, when she was driving eastbound on Interstate 64 near Scott Depot in Putnam County.

"Her vehicle left the traveled portion of the roadway and impacted with a concrete barrier near the berm portion of the highway with such force as to cause the driver and passenger side front seat air bags, with which the automobile had come factory equipped, to activate," the suit says.

"The steering wheel mounted driver's side air bag ? was defective. It didn't fully deploy and the accelerant designed to fully deploy the air bag was not completely dissipated by ignition and combustion."

As a result, the suit says McBride suffered chemical burns from the air bag accelerant. And that, the suit says, has resulted in her developing complex regional pain syndrome II, "a severe peripheral nerve injury" that has partially disabled her from work and required her to incur medical expenses of more than $100,000.

McBride, who is represented by Nitro attorney Harvey D. Peyton, says she also has suffered severe physical injuries that are permanent. She also says she has suffered scarring, disfigurement, pain and suffering, mental anguish, emotional upset and loss of enjoyment of life, annoyance, aggravation and inconvenience.

In addition, she says her medical expenses will continue in the future, as will her pain and suffering, mental anguish, annoyance, aggravation and inconvenience.

McBride claims she has lost earnings so far of more than $30,000, and she says the diminution of her earning capacity and her ability to earn money will continue in the future.

She seeks compensatory damages as well as interest, court costs, attorney fees and other relief.

She requests a jury trial.

The case has been assigned to Circuit Judge Ed Eagloski.

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Wednesday, February 15, 2006

Designs for better access

TimesLeader, originally uploaded by rsdscrpsnews.

Posted on Tue, Nov. 15, 2005
A DAY IN THE LIFE: Alaine Chang
Designs for better access
Architecture student’s goal is to be educator who would help future designers see needs of disabled.

WILKES-BARRE – She’s not asking you to walk a mile in her tan Velcro sneakers. But she wants you to think about it.

She’s not asking you to roll a mile in her wheelchair. But she wants you to consider the challenges in getting around that way – especially if you happen to be an architect.

“The world is by and large inaccessible,” Alaine Chang, who struggles with reflex sympathetic dystrophy, said recently.

The 51-year-old has become an unlikely architecture student who hopes to change the way we think about buildings.

“Designers should be talking to people with all different facets of disabilities,” she said.

After suffering nerve damage in one of her arms eight years ago, Chang developed the chronic pain disorder also known as complex regional pain syndrome.

It’s the result of a sympathetic nervous system gone haywire.

Following an injury, sympathetic nerve impulses cause blood vessels in the skin to contract, forcing blood deep into muscle tissue to minimize blood loss. Ordinarily the sympathetic nervous system shuts down within hours of an injury, but in Chang’s case that hasn’t happened.

An inflammatory response causes more pain, which in turn sparks further inflammation. Her legs have swollen, the skin on her hands is cracked, her vision is affected, and her doctors have told her that her condition will only worsen.

Chang’s disability has become both obstacle and motivation.

She recalls a trip to Philadelphia with her husband. They spotted an Asian grocery store and they both wanted to go inside to take a look. Her husband could, but Chang, in her wheelchair, couldn’t make it.

In 1990, the Americans with Disabilities Act was signed into law. It requires government buildings, services and programs to be accessible to those with disabilities, but 15 years later local governments are still working to cut ramps into sidewalks and retrofit older buildings.

And, of course, the world of small grocery stores, cafes and even her doctors’ offices is a different matter, Chang said.

Her life is a maze of narrow hallways, doors that aren’t automatic, and doors that are difficult to open, and that’s something she wants to change.

Two years ago in September, Chang returned to school at Luzerne County Community College to begin studying architecture.

This semester she’s enrolled in a construction material class that recently visited the downtown theater project to take a tour and sketch the structure.

Sitting in a coffee shop surrounded by her much younger classmates, Chang acknowledges that she has a long way to go before she achieves her goal.

She plans to get an associate’s degree in architecture and engineering and then go on for a master’s degree – one day she even hopes to be in a position to teach the next generation of architects.

Sipping a diet soda, she describes a row of dominoes as an analogy to explain her desire to be a teacher.

By becoming involved as an educator she hopes to get design students to consider the challenges of the disabled.

That’s like flicking the first domino, she explains, a small gesture that will create momentum and radiate change.

“It’s something that needs to be done,” she said, adding that “retirement’s far overrated. It’s boring.”

In her first go around with college, she got a political science degree from Wilkes University and then ran a dance school and later a retail store.

But that’s not something she relishes discussing.

“That’s the past, and now is now,” she said.

This semester, she’s thrown herself into drawing and detail work that has strained her eyes and left streaks of blood in her notebook.

She normally wears thin white gloves to protect the skin on her hands, made delicate and prone to splitting by her disorder.

Pulling a notebook out of a bag slung on the back of her wheelchair, she flips through pencil sketches of construction sites.

“Drafting is nasty,” she said. “On the computer it’s OK, but drafting with pencils and rulers when your hands are bleeding is not fun.”

Next semester she plans to take two classes, but she doesn’t really know when or where she’ll end up in a graduate program.

She’s dedicated, but her kids think she’s crazy.

A grown son and a daughter hundreds of miles away in Boston and New York can’t understand why their mother, who has nearly as many doctors as fingers, is back in school.

“They think I’m insane,” she said.

There’s no time to debate. It’s early afternoon and time for her class to meet at the construction site.

Along with her classmates, Chang, in her wheelchair, rolls to the half-completed theater. She’s concerned the site may not be wheelchair friendly, but that’s a minor blip on the way to her ultimate goal.

“You can overcome practically anything, the only thing you have to do ereis want to,” she said.

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Thursday, February 09, 2006

Study Finds Nerve Damage In Previously Mysterious Chronic Pain Syndrome, originally uploaded by rsdscrpsnews.

Study Finds Nerve Damage In Previously Mysterious Chronic Pain Syndrome

Main Category: Pain/Anesthetics News
Article Date: 06 Feb 2006 - 0:00am (UK)

Researchers at Massachusetts General Hospital (MGH) have found the first evidence of a physical abnormality underlying the chronic pain condition called reflex sympathetic dystrophy or complex regional pain syndrome-I (CRPS-I). In the February issue of the journal Pain, they describe finding that skin affected by CRPS-I pain appears to have lost some small-fiber nerve endings, a change characteristic of other neuropathic pain syndromes.

"This sort of small-fiber degeneration has been found in every nerve pain condition ever studied, including postherpetic neuralgia and neuropathies associated with diabetes and HIV infection," says Anne Louise Oaklander, MD, PhD, director of the MGH Nerve Injury Unit, who led the study. "The nerve damage in those conditions has been much more severe, which may be why it's been so hard to detect CRPS-I-related nerve damage."

Complex regional pain syndrome is the current name for a baffling condition first described in the 19th century in which some patients are left with severe chronic pain and other symptoms - swelling, excess sweating, change in skin color and temperature - after what may be a fairly minor injury. The fact that patients' pain severity is out of proportion to the original injury is a hallmark of the syndrome, and has led many to doubt whether patients' symptoms are caused by physical damage or by a psychological disorder. Pain not associated with a known nerve injury has been called CRPS-I, while symptoms following damage to a major nerve has been called CRPS-II.

Because small-fiber nerve endings transmit pain messages and control skin color and temperature and because damage to those fibers is associated with other painful disorders, the MGH research team hypothesized that those fibers might also be involved with CRPS-I. To investigate their theory they studied 18 CRPS-I patients and 7 control patients with similar chronic symptoms known to be caused by arthritis. Small skin biopsies were taken under anesthesia from the most painful area, from a pain-free area on the same limb and from a corresponding unaffected area on the other side of the body.

The skin biopsies showed that, the density of small-fiber nerve endings in CRPS-I patients was reduced from 25 to 30 percent in the affected areas compared with unaffected areas. No nerve losses were seen in samples from the control participants, suggesting that the damage was specific to CRPS-I, not to pain in general. Tests of sensory function performed in the same areas found that a light touch or slight heat was more likely to be perceived as painful in the affected areas of CRPS-I patients than in the unaffected areas, also indicating abnormal neural function.

"The fact that CRPS-I now has an identified cause takes it out of the realm of so-called 'psychosomatic illness.' One of the great frustrations facing CRPS-I patients has been the lack of an explanation for their symptoms. Many people are skeptical of their motivations, and some physicians are reluctant to prescribe pain medications when the cause of pain is unknown," says Oaklander. "Our results suggest that CRPS-I patients should be evaluated by neurologists who specialize in nerve injury and be treated with medications or procedures that have proven effective for other nerve-injury pain syndromes." She adds that the next research steps should investigate why some people are left with CRPS after injuries that do not cause long-term problems for most patients, determine the best way of diagnosing the syndrome and evaluate potential treatments.

"Investigations that identify the causes of disease are only possible if patients are willing to come to the lab and allow researchers to study them," she adds. "We are tremendously grateful to these CRPS patients, whose willingness to let us study them - despite their chronic pain - allowed us to make an important step in helping those who suffer from this condition." Oaklander is an assistant professor of Anaesthesia and Neurology at Harvard Medical School.


The study was supported by grants from The Mayday Fund, the National Institute for Neurological Disorders and Stroke, and the American Federation for Aging Research. Coauthors are Julia Rissmiller, Lisa Gelman, Li Zheng, MD, PhD; Yuchiao Chang, PhD; and Ralph Gott, all of the MGH.

Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of nearly $500 million and major research centers in AIDS, cardiovascular research, cancer, cutaneous biology, medical imaging, neurodegenerative disorders, transplantation biology and photomedicine. In 1994, MGH and Brigham and Women's Hospital joined to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups, and nonacute and home health services.

Contact: Sue McGreevey
Massachusetts General Hospital

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Chronic-pain sufferer fights drug sentence

OrlandoSentinel, originally uploaded by rsdscrpsnews.

Chronic-pain sufferer fights drug sentence

The imprisoned accident victim says he needed narcotics to ease his suffering.

Mitch Stacy | the Associated Press
Posted February 8, 2006

TAMPA -- Supporters say Richard Paey was a wheelchair-bound man in constant, brutal pain who needed large amounts of prescription narcotics just to live a normal life.

Prosecutors say he sought way too many of those often-abused painkillers, and that makes him a criminal.

On Tuesday, as Paey's attorney tried to persuade the 2nd District Court of Appeal to throw out his 2004 drug-trafficking convictions and mandatory 25-year sentence, advocates for chronic-pain sufferers said the case illustrates flaws in the law and how people dependent on strong pain medication can get tangled up in the government's overzealous war on drugs.

"I don't think anybody ever thought the war on drugs was going to mean a war on pain patients and their doctors, but that is in fact what it has meant," said Siobhan Reynolds of the Pain Relief Network, an advocacy group that is helping with Paey's appeal.

Paey is a 47-year-old former attorney and father of three who suffered a back injury in a 1985 car accident and since has been diagnosed with multiple sclerosis. He was left in a wheelchair and constant agony.

Nothing blunted the pain -- he has described it as feeling like his legs were on fire -- except strong narcotics such as Percocet and Vicodin, which he bought from pharmacies in numbers that got the attention of the federal Drug Enforcement Administration.

Prosecutors said he was forging prescriptions and getting so many pills that he had to be selling them, even though investigators' two-month surveillance turned up nothing. Paey said that because doctors in Florida were reluctant to prescribe medication in the amounts he required, he got his former doctor in New Jersey to send him undated prescriptions he could fill here.

The doctor testified at trial that he had never authorized the number of the pills Paey bought, even though other evidence contradicted him. A jury convicted Paey, and the judge imposed the minimum mandatory sentence of 25 years.

Paey's wife, Linda, said her husband was offered plea deals that would have kept him out of prison. But he rejected them because he didn't think he had done anything wrong.

On Tuesday, his attorney, John P. Flannery, told the three-judge appellate panel that the 25-year mandatory sentence was cruel and unusual punishment. Further, Flannery said, the doctor lied on the witness stand, and the prosecutor knew it.

The appeals court did not indicate when it would rule.

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Sunday, February 05, 2006

Woman's attitude, treatment tame painful disease, originally uploaded by rsdscrpsnews.

Woman's attitude, treatment tame painful disease

Web Posted: 01/29/2006 12:00 AM CST

Melissa Fletcher Stoeltje
San Antonio Express-News

It all started with a simple case of tendinitis.

Thirteen years ago Jan Wells, then 35, was a computer programmer in Austin working long, hard hours. One day her wrist started hurting. The pain lingered and grew so she went to see her regular doctor, who referred her to an orthopedist. By then her entire hand was in pain.

"It was like there was burning acid on my hand all the time," she says. "It hurt for things to touch it; even terry cloth was murder. The ridges on coffee mug handles were like knives cutting into my fingers. My hand started to cramp; I had to sleep at night with it under a pillow. I couldn't open door knobs."

The orthopedist listened to her symptoms and made a quick diagnosis: RSD, or Reflex Sympathetic Dystrophy.

The hallmark of the disease is puzzling, excruciating pain that arises after a usually minor injury, often of the extremities, or sometimes after no injury at all. The central nervous system goes haywire and nerves misfire, sending constant pain signals to the brain. The pain endures and magnifies long after the initial injury has healed. It can spread to other areas in the body.

Wells was extremely lucky: Many patients with RSD, also known as Complex Regional Pain Syndrome, go undiagnosed or misdiagnosed for long periods of time. RSD doesn't show up on X-rays or MRIs. Until recently, patients were often told that the pain was "all in their head." Many sufferers contemplate — and some even commit — suicide.

RSD is classified as a rare disorder — meaning fewer than 200,000 Americans are afflicted with it — although RSD advocates say the true number is likely in the millions. It affects more women than men.

"It is a devastating disease. People lose jobs, friends, houses, marriages," says Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association.

Besides pain, symptoms can include swelling, skin coloration changes, variations in temperature, sweating and movement disorders.

Wells' orthopedist referred her to a pain clinic in Austin, but instead of getting better, things got worse

She underwent a series of 13 nerve blocks, in which analgesic medicine was injected directly into the nerves affecting the injured hand. The shots totally incapacitated Wells and she could no longer work. The blocks helped some, but the relief was short-lived.

Toward the end of the nerve block series, the doctors also put Wells on pain medication, which left her dazed and drowsy. In addition, they prescribed an antidepressant, which has been shown to reduce pain.

Formerly an outgoing, free-spirited woman who was heavily involved in community causes, including serving as director of a women's center in San Marcos, Wells took to her bed. The world began to close in around her. Like many of those who suffer from chronic pain, she sunk into depression, despite the medication.

The pain only got worse.

"If my hand brushed against something, it was like tearing the hide off my skin," she says.

Next the doctors at the clinic tried an IV drip of an analgesic cocktail, administered at a hospital over several days. Wells' pain disappeared, but once the medicine wore off it returned with a vengeance.

So doctors tried a different type of block, but again it was ineffective. Then they decided to perform a sympathectomy, which involved cutting the sympathetic nerve affecting her upper right side.

The surgery didn't help. In fact, it caused the RSD to spread up her right arm.

At this point, Wells was taking 13 pills a day. In the depths of her despair, she took to banging her head against a wall in effort to distract herself from the pain. She couldn't sleep.

"Even the air across my skin was excruciating," she says. "Bed sheets hurt. It hurt to wear clothes. I took to shopping at thrift stores and garage sales because the material was softer."

Doctors at the pain clinic wanted to try a spinal cord stimulator — an implanted device that helps some patients — but Wells said no, no longer trusting them.

Still, her innate gung-ho personality wouldn't let her succumb to total resignation; Wells remained determined to crawl out from under RSD. At this point she was also facing financial hardship, having no job and no money. With no place else to turn, she accepted an offer of marriage from a friend of a friend and moved to San Antonio.

It was around this time that she came across an article in Texas Monthly magazine that sang the praises of pain clinics at teaching hospitals, saying they were the locus of cutting-edge science. In 1994, at the end of her rope, she walked in to the pain clinic at University Hospital (University Center for Pain Medicine) and begged for an appointment.

There, Dr. Somayaji Ramamurthy put Wells on the road to her liberation.

Ramamurthy is a genial, sober man who did his medical training in India. A pioneer pain specialist who opened the first pain clinic in South Texas, he has trained many U.S. military doctors in the treatment of pain

The mantra he gives his RSD patients is this: Never stop moving. Many patients show up at his door step with the affected limbs essentially frozen. Pain leads to immobilization, which leads to more pain.

"When you move the limb, you reduce the sensitivity, make more blood flow into it and you increase the sensation coming along the larger (nerve) fibers," he says. This sort of good "input" helps decrease the painful signals, cutting them off at the gate. At his clinic, patients work not only on mobilizing the affected limbs but also on "desensitizing" the area with greater and greater external stimulation — first with feathers, then with terry cloth, then with warm wax.

Movement, he says, not only flexes and stretches tight muscles and joints, it releases chemicals in the brain that fight depression. With less depression, patients move more, which further reduces their pain.

Ramamurthy, who treats about 200 RSD patients a year, says pain patients can get into a vicious cycle.

"Everything becomes contingent upon the pain," he says. "People let it start controlling their lives. They cannot work, they cannot participate in life or go to the movies or have sex. Pain gets incorporated into everything."

For this reason, he tells his patients not to discuss their pain with anyone, not even family. The goal is to take the brain's focus off the negative.

In addition to experimenting with her medication, Ramamurthy put Wells on a comprehensive physical therapy program, getting her to move her arm, which had thrown her entire body out of whack, causing secondary pain.

He also worked on relieving pain in her toe. After she stubbed it, RSD has set in there, too.

Wells discovered to her shock that she was 5 1/2 months pregnant. She had believed her periods stopped because of all the medication she was taking. She contemplated terminating the pregnancy, not only out of fear that the medication had damaged the fetus but because the trauma of childbirth can cause RSD to spread.

But after some agonizing, she decided to continue the pregnancy and went off all her medications, except the antidepressant.

Her son, Kristopher, was born prematurely but otherwise fine and is now 10. And, miraculously, the RSD didn't spread.

Though she went back to her physical therapy regimen and pills, Wells remained in considerable pain. She was unable to hold her son or interact with him much on a tactile level. Then, when Kristopher was 2, a medical fellow at the clinic brought up the subject of a spinal cord stimulator again. Ramamurthy had also suggested the device earlier but Wells was still too terrified of surgery to consider it. Finally, she was open to the idea.

The device involves implanted electrodes in the spinal cord area that transmit signals producing a tingling sensation in the affected area. This pleasant sensation "overrides" the pain signals, much in the way exercise does, and thus cancels them out or greatly reduces them in many patients. Another device containing the battery is implanted in the hip region. After a trial run, a stimulator was implanted in Wells. Her transformation was remarkable.

"The person you see here today is not the person I was before," she says calmly. "It was like a door was opened on a closet and I was able to step back into life."

But it took more than the stimulator to give her this new lease on life. Wells also underwent a profound mental readjustment which, ironically, was spurred by her old nemesis: pain. One day she and Kristopher were tickling on the couch when his head hit her nose, breaking it. For three days Wells was immobilized on a recliner, focusing only on her breathing. It was during this time she had an epiphany.

"I didn't give into the RSD, but I decided to quit fighting it," she says. "I quit letting it ride on the top of my head and my shoulders and decided to put it on my hip, where its been ever since. Every single day I had been pounding against a wall, and all of a sudden I decided to just walk around it. I decided to just move on. Today my attitude is this: relax, float, chill out."

Wells no longer take medications. While some days are better than others, she is mostly back to her old active self, substitute teaching at her son's school and working as an advocate for her semirural neighborhood on the city's far Northwest Side. She also takes part in a community dance troupe with her son, who has grown into a creative, gifted boy, she says. She does yoga regularly, doing slow, careful movements at a gym and meditates "every second of the day." She stays focused on keeping her body in perfect balance and posture.

Now 48, she still has some pain, especially in her toe, but she no longer lets it get her down. The stimulator is crucial; once, when her battery went out, she found herself thrust back into "the pit" of RSD. But with day surgery the battery was replaced and Wells was back on track.

"Pain is not the ruler of my life anymore," she says. "It's simply a companion."

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Drawing attention to mystery illness, originally uploaded by rsdscrpsnews.

Drawing attention to mystery illness

Sunday, February 05, 2006
By Anne B. Jolis

WASHINGTON TWP. -- There's no national awareness day for RSD patients.

It's all they can do to get treatment.

RSD, or Reflex Sympathetic Dystrophy, affects the sympathetic nervous system. The condition is a mysterious one -- who gets it and why is still unclear, though it is almost always triggered by some kind of injury.

"It can be something as innocuous as someone drawing blood and hitting a nerve instead of a vein," said Dr. Philip Getson, a family practitioner who specializes in RSD. Getson is also an associate professor of medicine in the Department of Neurology at Drexel University College of Medicine.

RSD affects everyone differently -- and it goes through stages -- but it's main symptom is chronic, intense, burning pain. Some get it only in one place in the body, though it can spread.

Others, like township resident Kristin Birchfield, get it all over their bodies.

Birchfield, 36, was a healthy, active woman until she gave birth to her daughter three and a half years ago. The anesthesiologist stuck her with a needle six times, Birchfield said, while administering an epidural, and left her with the lifelong incurable RSD.

"It went from being the best day of my life to being the day that I lost my own," said Birchfield. "The only thing you're aware of is the pain -- and trying not to impose that on the people you love."

Getson said there are a number of treatment options -- none of them perfect, each with its own drawbacks. The first, Getson said, is some form of psychological intervention, from therapy to antidepressants to meditation to Yoga and Reiki.

Currently, both Getson and Dr. Robert Schwartzman, also in the Department of Neurology at Drexel, are the only doctors in the U.S. who perform ketamine treatments.

"We haven't cured anyone, but we have been able to improve people's lot in life," said Getson.

In Germany, doctors use a different procedure, infusing the ketamine over a five-day period while the patient is in an induced coma, which Getson said enables them to give patients a much more intense and effective dose of ketamine. In the U.S., the FDA has banned this practice, forcing Schwartzman and Getson to do the treatment while the patients are awake, which Getson said is far less effective.

Just over a year ago, Kristen Birchfield went to Germany for the coma-induced ketamine treatment with $40,000 raised through fund-raisers and the help of strangers.

"When I got back, I had a lot of relief in certain areas," said Birchfield. "But within four months, it just came back. All of it."

Birchfield still gets infusions here in the US, but because Schwartzman and Getson are so overbooked she won't have the next one until March. Her muscle and nerve spasms still frighten her baby daughter, she still can't sleep in the same room as her husband, she still can't practice the painting she loves or sing in her church choir. Her body is covered in lesions that won't go away. The pain, she says, is intolerable.

Thomas Gariffo, 60, also from Washington Township, has a different story. His RSD likely started in the late 1990s when he underwent a series of botched operations for gout he suffered in his foot. He went from physician to physician, he says, and was even sent to a psychologist, with no relief.

"Doctors will tell you you're crazy," said Getson. "They say if you look normal, you must be crazy. For the most part, this is a disease you can't see."

Finally, in October 2000, he was diagnosed with RSD. Since his disease is mostly confined to his foot, Gariffo said that a spinal cord stimulator has made his life livable.

Gariffo is lucky.

According to Getson, early diagnosis and intervention is the key to successfully treating RSD -- hard to come by, since so few doctors recognize the condition for what it is.

"I have the pain 24 hours a day, seven days a week," said Gariffo. "But I can do a little gardening, I can help my wife do the laundry or stuff like that. I'll never be 100 percent."

As for Birchfield, she says, she would give anything right now to be the kind of mother she longs to be -- to play with her daughter, to give her a bath, to pick her up and cuddle her whenever she gets the urge.

"There are no good days," said Birchfield. "But on a bad day -- I know it sounds terrible -- I feel it would have been kind to me and my family if I would have died."

"On those other days," she added, "I can't help but hope that God is saving a spectacular miracle just for me."

For more information on the diagnosis or treatment of RSD, go to

There are two support groups in South Jersey, in Mount Holly and Mount Laurel. To get in touch, call Kathy Henson at (609) 268-1565 or Sue Holcomb at (856) 461-5941.

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New center ready to help, originally uploaded by rsdscrpsnews.

New center ready to help

Bucks County Courier Times

Finding a ground-floor apartment with three steps instead of 13 was a big leap for Vera Parfylo, and something she doubted could happen not long ago.

The apartment isn't the only new thing in her life either.

Now, the Bristol Township woman has the specialized resources and supports that residents once could get only outside the county.

What has changed is the recent opening of the Center for Independent Living of Bucks County.

An outgrowth of the civil rights and independent-living movements, such centers - also called CILs -provide free, community-based services for people with a variety of disabilities.

The purpose is helping those with disabilities gain self-sufficiency through peer support, referral, advocacy and skills training. The centers also provide education, consultation and training to promote better understanding of disabilities. There are more than 400 CILs in the United States, including 18 in Pennsylvania.

Roughly one out of every seven Bucks residents over age 5 has a disability, according to the 2000 Census. Until now, people with questions or concerns involving disabilities had to contact the Delaware County-based Freedom Valley Disabilities Center, which serves the Philadelphia suburbs.

Earlier this year, the Bucks County Council for Individuals with Disabilities, a local advocacy group, secured a $250,000 state grant to open the Bucks center. Freedom Valley is overseeing operations at the Middletown center for the first two years. After that, it will operate independently.

Bucks staffers anticipate providing one-on-one services to 40 individuals in the first year, and about 100 referral calls a month.

Parfylo is among the first clients since the center opened in October.

The former hospital nurse was disabled in August 1998 after a psychiatric patient assaulted her at work, she said. After the attack, she was diagnosed with reflex sympathetic dystrophy, a chronic neurological condition that causes constant, debilitating pain.

If all goes as scheduled next month, Parfylo anticipates moving into a more handicapped-accessible apartment in Fairless Hills, where her new landlords are creating a handicapped parking space near her front door.

Through the centers, Parfylo also hopes to become more involved as an advocate for others.

"I wouldn't want anyone else to go through what I did," she said.

Parfylo said she experienced what many newly disabled people do - the end of their old life and the rebirth of a new one, according to CIL staff members.

Newly disabled people enter an unfamiliar world, facing obstacles they never considered or encountered. Often, they have no idea how to navigate in their new world and family and friends don't know where to turn either.

Removing such barriers is Tony Barker's job. He's an independent living specialist at the new Middletown center.

"You're not only in a new world, you're in a world where people haven't talked about the available services. The services are the best kept secret," Barker said.

Center clients are evaluated to determine what steps are necessary to achieve individual independence goals and what resources and services are required. Staffers assemble information and present options, while clients determine their own individual paths and goals.

"It's all about the consumer," Barker added.

Everything is geared toward obtaining independence, Barker said. The center provides the tools and support, but clients must do most of the work themselves.

The center also provides advice or assistance to municipalities, schools and businesses that are concerned about compliance with the U.S. Americans with Disabilities Act, as well as sensitivity training, employment or tax breaks, and other incentives.

Center staffer Emily Yaskowski is organizing advocacy teams that will identify and address issues facing people with disabilities in Lower, Central and Upper Bucks, such as lack of transportation and housing.

"It's not about special treatment," Yaskowski said. "It's about equal treatment."

Jo Ciavaglia can be reached at 215-949-4181 or

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Wednesday, February 01, 2006


Sun-Herald, originally uploaded by rsdscrpsnews.



DEAR DR. DONOHUE: My niece was rear-ended in a car accident more than a year ago. There was extensive damage to her right shoulder, arm and hand. She was still in pain long after the accident, without anyone being able to tell her why. Finally, a doctor diagnosed sympathetic reflex dystrophy. Even now, she is in constant pain, with no mobility of her right hand. The hand has changed color. Please address this condition in your column. -- C.S.

ANSWER: Reflex sympathetic dystrophy's name has been changed to complex regional pain syndrome. It involves pain, nerve impairment and blood vessel changes that occur at the site of an injury and persist well after the usual expected recovery time. The injury does not have to be as severe as your niece's. A simple sprain can bring it on.

A series of changes occurs. Somehow, nerve disturbance produces lingering pain and great sensitivity to weather changes -- especially to cold. Early on, the skin is red and warm. Three to six months after symptoms appear, the skin becomes blue and cold. Joints in the affected area can stiffen, and muscles shrivel and weaken. In time, the skin thins and takes on a glossy appearance. It's speculated that the sympathetic nervous system -- the part of the nervous system not under voluntary control and the part involved with such things as blood flow -- is misfiring. That's why the syndrome used to be called sympathetic reflex dystrophy.

Physical therapy is a must for anyone with this problem. Occupational therapists can teach patients how to overcome their disability by demonstrating how to use special devices that permit them to cope with their disability. Pain-relieving drugs like ibuprofen often help. If they don't, stronger analgesics are prescribed. The seizure medicine Neurontin and the antidepressant medicine amitriptyline are given, not to prevent seizures or to treat depression but to provide pain relief. Both can be used for that purpose. Nerve blocks help some people.

If you niece is not making progress, she should investigate rehabilitation centers or pain clinics. Both can be found in all metropolitan areas.

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