Monday, August 29, 2005

College opens new chapter in life of chronic-pain victim


Lebanon Daily News.com, originally uploaded by rsdscrpsnews.

College opens new chapter in life of chronic-pain victim
By JOHN LATIMER
Staff Writer
Lebanon Daily News

Today is the first day of the rest of Amanda Ebersole’s life.

Cliché that may be, but it’s also the bona fide truth. Because Ebersole began classes at Edinboro University today.

Attending the college near Erie is the first step on a promising path for the 24-year-old North Lebanon Township resident who 10 years ago contracted a rare and painful neurological disease that has since dominated her life.

It is a bit like coming out of a long, dark tunnel into bright sunshine, she said during an interview at her home last week.

“Finally, I have some good news,” she said, a bright smile lighting up her face. “For 10 years, it has just been bad news after bad news.”

Ebersole was a ninth-grader at Cedar Crest High School when her life was changed forever by what started as a simple ankle sprain. The injury did not respond to treatment; it got worse, and eventually developed into a little-known disease called Reflex Sympathetic Dystrophy Syndrome.

Readers may recall Ebersole, whose story was first told in the Lebanon Daily News five years ago. At that time, she was preparing to graduate from Cedar Crest, a major accomplishment in itself because she had to rely on a tutor after the disease made attending classes impossible.

Also known as Complex Regional Pain Syndrome, RSDS affects millions of people in the U.S., according to the Reflex Sympathetic Dystrophy Syndrome Association. The precise cause of the disease is still a mystery, and a cure has yet to be found. Researchers believe it is the result of a malfunction in a person’s sympathetic nervous system in which the brain continues to send pain signals to damaged tissue, causing swelling and an excruciating burning sensation that spreads to surrounding tissue and damages them in an endless cycle of pain.

Ebersole’s RSDS specialist, Dr. Robert Knobler, who himself suffers from a milder form of the disease, has described the pain as rubbing sandpaper on badly sunburned skin — without stopping.

If caught in its early stages, there is a better chance for halting progression of the disease. But when undiagnosed, as in Ebersole’s case, it can become full-blown and spread throughout the body.

The past decade of Ebersole’s life has been spent coping with the disease by trying to manage the pain and stem its destructive and relentless march through her body.

Mostly, it has been a losing battle, with frequent trips to the hospital. Tragically, an attempt with an experimental drug led to a side-effect that caused Ebersole to lose the use of her legs. Today, she relies on a mechanized wheelchair to move about.

Through it all, Ebersole has maintained a remarkably positive attitude. She gives credit for that to the support she receives from her family and friends, many of whom are RSDS suffers with whom she chats with online.

Unable to fully care for herself, Ebersole has continued to live with her parents, Kenneth and Kathy Ebersole, in their home on Heilmandale Road.

Until recently, the idea of leaving home, much less attending college, was a far-fetched one for Ebersole.

That all changed in November when Dr. Stuart Hartman, a doctor who treated her at the Good Samarita Hospital’s Hyman Caplan Pavilion, told her that she was eligible for tuition assistance from the Office of Vocational Rehabilitation, a division of the state Department of Labor and Industry.

“I didn’t know anything about it,” Ebersole said. “I was just so excited leaving his office that day. He had given me the number of the Office of Vocational Rehab, and I got right on the ball that day and called.”

Ebersole was put in touch with a counselor and immediately started to make plans to attend the Lebanon campus of Harrisburg Area Community College. But those plans changed after she spoke with one of her online buddies about Edinboro University’s program for the disabled.

Since the 1970s, the university has been a leader in providing educational opportunities for the disabled by making the campus accessible and offering around-the-clock support services, including personal-care attendants, said Bob McConnell, director of the Office of Students with Disabilities. Of the university’s 8,000 students, 450 are disabled, he said.

“Our goal is really to provide a university where disabled students can come here and be college students just like everybody else,” McConnell said. “We want to give them an opportunity to succeed, and what they make of it is up to them.”

Ebersole checked out the Fighting Scots’ Web site and liked what she learned about the school and its nearly 600-acre campus. She applied online and was accepted two weeks later.

When visiting the campus with her mother for the first time this spring, Ebersole was not disappointed.

“Every student is willing to help you,” she said. “They don’t turn their nose up at you like you are lower than them. It is just a really friendly place and I fell in love with it.”

At first, the idea of attending Edinboro was a bit daunting for her and her parents because it is a five-hour trip from home, Ebersole admitted.

“They were excited about me going to HACC but then when Edinboro came up, mom was a bit hesitant about her baby living so far,” she said with a laugh that comes easier and more often than it has in years. “My mom and I have always been so close.”

Ebersole’s tuition and most of her additional expenses will be covered by scholarship grants and the state Office of Vocational Rehabilitation. Joining her is her service dog, Ami, a black Labrador Retriever.

“I already got him an Edinboro bandanna so he is going to be dressed for the first day of classes,” she said.

Even though she will still be dealing with her RSDS, Ebersole is determined to make the most of her time at Edinboro. She plans to major in social work and eventually get a master’s degree. Having spent so much time in rehabilitation-treatment centers, she thinks working in one might be a good fit.

“I really want to work at a rehab hospital, like Moss Rehab (in Philadelphia),” she said. “I had a wonderful social worker there, and she inspired me.”

——————

http://www.rsds.org

http://www.edinboro.edu

http://www.dli.state.pa.us/ovr


For the original story online, please click here: http://www.ldnews.com/news/ci_2983394

QUADRIPLEGIC SAILS ACROSS ENGLISH CHANNEL


AZERTAC Logo, originally uploaded by rsdscrpsnews.

QUADRIPLEGIC SAILS ACROSS ENGLISH CHANNEL
[August 29, 2005, 15:32:43]

A paralyzed woman has become the first quadriplegic sailor to cross the English Channel.

Hilary Lister, from Kent, used controls powered by her breath to navigate her boat from England to France yesterday, reaching Calais after six hours and 13 minutes.

The mechanism she uses is similar to one on her wheelchair and has two straws connected to switches to control the sails and steer the vessel.

After arriving in France the 33-year-old said, “I am just thrilled.”

Lister, from Canterbury, has been a quadriplegic for four years, because of a progressive degenerative disease, reflex sympathetic dystrophy, which has worked its way up from her ankles to her neck. She can now move only her head, eyes and mouth and took up sailing two years ago as a way to boost her self-confidence.

By crossing the Channel, Lister set a record for the world’s longest solo sail by a quadriplegic.


For the original story online, please click here: http://www.azertag.com
/en/index.shtml?language=english&catid=&news_year
=&news_month=&news_day=&newsid=131893&themes_viewing
=&themes_page=&themeid=&news_page=
/p>

Thursday, August 25, 2005

Support Groups


times_logo, originally uploaded by rsdscrpsnews.

NWPA RSDS Associationmeets periodically at Hamot Health Connection. Call Northwestern Pennsylvania Reflex Sympathetic Dystrophy Syndrome Association at 796-3842.

See: http://www.goerie.com/apps/pbcs.dll/article?AID=/
20050822/LIFESTYLES07/508220324/-1/LIFESTYLES

Wednesday, August 24, 2005

Disabled woman's solo mission


EdinburghNews, originally uploaded by rsdscrpsnews.

Tue 23 Aug 2005

Disabled woman's solo mission

A SEVERELY disabled woman was today attempting to become the first quadriplegic to sail solo across the English Channel.

Able to move only her head, eyes and mouth, Hilary Lister will have to overcome severe physical pain to navigate her boat through one of the most treacherous shipping lanes in the world. The 33-year-old was attempting to sail a 26ft soling boat - a cross between a dinghy and a yacht - from Dover to Calais. If she succeeds she will set a record for completing the world's longest solo sail by a quadriplegic.

The boat is adapted to be controlled by the "sip and puff" method where Mrs Lister will adjust the sails and tiller through blowing and sucking through two straws.

Mrs Lister took up sailing two years ago as a way to boost her self-confidence.

She was diagnosed when she was a teenager with the degenerative disease reflex sympathetic dystrophy which causes exaggerated and painful responses from normal sensations and has gradually led to her losing most of her normal functions.


For the original article online, please click here: http://edinburghnews.scotsman.com/uk.cfm?id=1829132005

The Antinociceptive Effect of Local or Systemic Parecoxib...


AnesthesiaAndAnalgesia, originally uploaded by rsdscrpsnews.

Anesth Analg 2005;101:807-811
© 2005 International Anesthesia Research Society
doi: 10.1213/01.ane.0000166980.45162.1c
PAIN MEDICINE
The Antinociceptive Effect of Local or Systemic Parecoxib Combined with Lidocaine/Clonidine Intravenous Regional Analgesia for Complex Regional Pain Syndrome Type I in the Arm
Luiz-Cleber P. Frade, MD, Gabriela R. Lauretti, MD, MSc, PhD, Izabel C.P.R. Lima, MD, MSc, PhD, and Newton L. Pereira, B Pharm, MSc, PhD

Pain Clinic, Teaching University Hospital of the Faculty of Medicine of Ribeirão Preto, University of São Paulo, Brazil

Address correspondence and reprint requests to Gabriela R. Lauretti, MD, MSc, PhD, Rua-Campos Sales, 330, apto. 44, Ribeirão Preto-São Paulo 14015 110, Brazil. Address e-mail to grlauret@fmrp.usp.br.

We evaluated the efficacy of local or systemic parecoxib combined with lidocaine/clonidine IV regional analgesia in complex regional pain syndrome (CRPS) type 1 in a dominant upper limb. Thirty patients with CRPS type 1 were divided into three groups. The control group (CG) received both IV saline in the healthy limb and IV loco-regional 1 mg/kg of lidocaine + 30 µg of clonidine, diluted to a 10-mL volume with saline. The systemic parecoxib group (SPG) received a regional block similar to that administered to the CG but with systemic 20 mg of parecoxib, whereas the IV regional anesthesia with parecoxib group (IVRAPG) received an extra IV 5 mg of loco-regional parecoxib compared with the CG. The block was performed once a week for 3 consecutive weeks. Analgesia was evaluated by the 10-cm visual analog scale (VAS) and rescue analgesic consumption. The IVRAPG showed less daily ketoprofen (milligrams) consumption in the second and third weeks compared with the other groups (P < 0.05). The IVRAPG also showed less ketoprofen consumption when comparing the first and second week with the third week (P < 0.05). The VAS score comparison among groups revealed that groups were similar during the first and second week observation, although the IVRAPG showed smaller VAS scores in the third week compared with both CG and SPG (P < 0.05). We conclude the IV 5 mg of parecoxib was an effective antiinflammatory drug combined with clonidine/lidocaine loco-regional block in CRPS type 1.


For the original article online, please click here: http://www.anesthesia-analgesia.org/cgi/content/abstract/101/3/807

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome


ARDonline, originally uploaded by rsdscrpsnews.

Ann Rheum Dis 1997;56:201-204 ( March )
Concise reports

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome
S Adami,a V Fossaluzza, D Gatti,a E Fracassi,a V Bragaa

a COC di Valeggio, University of Verona, Valeggio, Verona, Italy , b Ospedale di Udine, Italy

Correspondence to: Professor S Adami, Ospedale di Valeggio,37067 Valeggio s/M, Verona, Italy.

Accepted for publication 27 November 1996

Abstract

OBJECTIVE---The reflex sympathetic dystrophy syndrome (RSDS) is a painful limb disorder, for which a consistently effective treatment has not yet been identified. The disease is associated with increased bone resorption and patchy osteoporosis, which might benefit from treatment with bisphosphonates, powerful inhibitors of bone resorption.
METHODS---Twenty patients with RSDS of foot and hand, were randomly assigned to blind administration of either alendronate intravenously (Istituto Gentili, Pisa, Italy) 7.5 mg dissolved in 250 ml saline solution or placebo saline infusions daily for three days. Two weeks later all patients had an identical treatment course with open labelled alendronate (7.5 mg/day for three days), independent from the results of the first blind treatment.
RESULTS---In the patients treated with blind alendronate the diminution in spontaneous pain, tenderness, and swelling (circumference of the affected limb) and the improvement in motion were significantly different from baseline (p<0.001), from those observed within the first two weeks in the control group (p<0.01), and from week 2 to week 4 (p<0.01). In the patients given blind placebo infusions no relevant symptomatic changes were observed after the first two weeks of follow up, but they responded to the open alendronate therapy given afterwards. In 12 patients with RSDS of the hand the ultradistal bone mineral content (BMC) of the affected arm was considerably lower than that of the controlateral arm (mean (SD)) (426(82) mg/cm versus 688(49)). Six weeks after the beginning of the trial BMC rose by 77(12) mg/cm (p<0.001) in the affected arm, but it did not change in the controlateral.
CONCLUSIONS---These results indicate that bisphosphonates should be considered for the treatment of RSDS, producing consistent and rapid remission of the disease.
(Ann Rheum Dis 1997;56:201-204)

Introduction

The reflex sympathetic dystrophy syndrome (RSDS) is a painful limb disorder characterised by swelling, autonomic dysfunction, patchy osteoporosis and, later, contracture formation. Some of the symptoms might not be present or a particular feature is more apparent; this has been responsible for the myriad of terms applied to partial descriptions and designations of RSDS.1

Various methods of treatment have been tried, including physiotherapy, calcitonin, corticosteroids, sympathetic blockade, non-steroidal anti-inflammatory drugs. The results of these attempts are inconsistent2-4 and they produce slow improvements that cannot be easily distinguished from spontaneous remission.

The bone disease is characterised by increased bone resorption,5 which might benefit from treatment with bisphosphonates, powerful inhibitors of bone resorption.6 In preliminary studies we observed rapid and persistent remission of the symptoms in several patients treated with intravenous clodronate or alendronate. Our preliminary results together with other positive uncontrolled findings with intravenous pamidronate7 8 prompted us to undertake a double blind study in patients with RSDS with intravenous alendronate, a powerful bisphosphonate, which was extensively investigated in our unit for several years.9 10


*** Editor's Note: This article is very long. If you'd like to view the remainder... please click here for the original version online http://ard.bmjjournals.com/cgi/content/full/56/3/201


Sunday, August 21, 2005

RecordOnline


RecordOnline, originally uploaded by rsdscrpsnews.

August 20, 2005

Family keeps victim of nerve disorder strong

For more than 11 years, James Formato of New Windsor has dealt with a painful nerve disorder known as RSDS (Reflex Sympathetic Dystrophy Syndrome) and CRPS (Chronic Neurological Syndrome).
He wants others to know about the disorder, too. It is characterized by constant chronic burning pain, inflammation, spasms in blood vessels and muscles of the extremities, and insomnia/emotional disturbance.
His supportive and loving family, whom he calls his "major contributors" in keeping his spirits up, includes his wife, Sharon, and their children, their spouses and offspring, his mother, Freida, and many more.
"They are responsible for keeping me focused and the reason for my daily struggle with life," he said.
His children have created a Web site to share knowledge about the disorder that has disabled the former teacher who was named "Outstanding Science Teacher for Physical Science" in 1985.
They also want people to realize that the Reflex Sympathetic Dystrophy Syndrome Association, founded in 1984 to promote public and professional awareness, spends $75,000 every year on research.
For information, log onto www.rsds.org/3/research/rsdsafundedreseach.html or www.rsds.org/6/donate.html.
Formato can be reached at 562-1841. His address is 53 Clintonwood Drive, New Windsor 12553.

Barbara Bedell's column appears daily. Call her at 346-3125.


For the original story online, please click here: http://www.recordonline.com/archive/2005/08/20/bedell20.htm

Addiction fears and resource shortfalls hamper pain treatment


Macleans.Ca, originally uploaded by rsdscrpsnews.

August 18, 2005

Addiction fears and resource shortfalls hamper pain treatment

Institutional 'opiophobia' prompts health-care professionals to administer opioids improperly, expert says
The treatment of pain is taken more seriously than it ever was, according to pain specialists, but it is hampered by a lack of health-care resources and by doctors' fears of causing addiction if they prescribe powerful opioid-based medication.

"Not treating pain adequately not only slows recovery, but if left untreated, (pain) can become chronic, at which point it is no longer simply a symptom of disease but becomes a medical problem in its own right," says Dr. Roman Jovey, the Mississauga, Ont., based president of the Canadian Pain Society.

"The trouble is that waiting lists for pain clinics are at least one year and there is a window of opportunity of two to three months for injured patients (for the best chance) to prevent them developing chronic pain."

Pain management is also hampered by health-care professionals' reluctance to prescribe opioids such as morphine, oxycodone, codeine and fentanyl for fear the drugs will cause addiction or end up on the black market -- a fear that has been dubbed "opiophobia."

"It is because of institutional opiophobia that doctors and nurses are trained to give the lowest dose of opioid for the longest time interval -- just about the worst way to administer it," Jovey says.

"A common fallacy is that you should only take it when you absolutely have to because it is addictive." In contrast, Jovey says people should take opioids on a set schedule to prevent bouts of severe pain that may require larger doses, which come with a consequent increase in side-effect risk.

According to a 2001 Canadian survey, 29 per cent of the adult population has experienced pain lasting more than six months, from conditions such as spinal pain, low back pain, fibromyalgia, postoperative pain and complex regional pain syndrome.

"As patients age, the more pain they get. Spinal pain, for example, will eventually affect 100 per cent of patients," says Dr. Gilbert Blaise, a professor of anesthesiology at the University of Montreal who runs pain clinics at two local hospitals.

Even among children, at least 20 per cent experience long-term pain, says anesthesiologist Dr. Allen Finley, who treats children and adolescents at the IWK Health Centre in Halifax.

With files from The Medical Post.

For the original story online, please click here: http://www.macleans.ca/topstories/health/article.jsp?content=20050817_124134_4760

'The pain is 24-7': Coping with chronic agony


GraysonCountyNews-Gasette, originally uploaded by rsdscrpsnews.

Local News

'The pain is 24-7': Coping with chronic agony

It goes by a variety of names, but it is 24-7 severe pain for which there is little or no relief.

Called Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS), but whatever the name, Carolyn Clemons of Leitchfield, has been a victim since 2000. The burning, almost unbearable pain began in her right foot after surgery.

"My foot felt as though the skin had been stripped away, gasoline poured over it and then set afire," she recalled. "I tried many medications, saw one doctor after another, but the pain always came back with a vengeance."

Clemons said she was unable to function normally, because the pain went on constantly, every day. "At one point," the registered nurse said, "I considered severing the foot with an axe that was nearby."

Another Leitchfield resident with the disorder, Robert Kevin Clark, died in May 2004. Clemons, who knew Clark through her work with local support groups for other victims of RSD, says she is not free of the pain. "It is tolerable, but every few months I must have numerous nerve blocks, and I will be on medication the rest of my life or until a cure is found."

With another RN, Nancy LaRue, Clemons is trying to raise money to buy the book "Chronic Pain" by Hooshang Hooshmand, M.D., to be placed in the local hospital, doctors' offices, and with physical therapists as a reference book.

"One thing we've found," she said, "is that few doctors understand the disorder, and patients with it lost hope that their lives will ever be more than constant, nearly unbearable pain."

Estimates vary on how many people are affected by RSD, she said, but the number is in the millions. People who have RSD can develop severe depression when it becomes clear no one can ease their pain. Clemons said it is estimated 20 percent of those afflicted with the disease commit suicide rather than put up with it.

Both Clemons and LaRue say that any reader who thinks they or a family member may have RSD or need more information on the disorder, can call 270-879-4023 or 270-259-4746 for leads on specialists and up-to-date research on the disorder.

The RSD Support Group meets from 1-3 p.m. the first Tuesday of each month at the library.

For the original article online, click here: http://www.gcnewsgazette.com/articles/2005/08/18/local_news/news92.txt

Wednesday, August 17, 2005

Neuropathic Pain Market to Reach $3.5 Billion


YahooFinance, originally uploaded by rsdscrpsnews.

Press Release Source: WWMR, Inc.

Neuropathic Pain Market to Reach $3.5 Billion by 2014, Despite Generic Neurontin Launch
Monday July 11, 5:00 am ET

SAN FRANCISCO, July 11 /PRNewswire/ -- WWMR, Inc. has released the supplement to the 2004 edition of the highly regarded series of US Neuropathic Pain reports, which examines the effects of the entry of generic competition on Neurontin in the anticonvulsant market for Neuropathic Pain. Key events leading up to and surrounding the launch of the gabapentin generics, as well as Pfizer's efforts to bring a follow-on-to-Neurontin brand, Lyrica (pregabalin), into the market are detailed. Pfizer has sustained significant losses in Neurontin sales and prescription volume with the entry of generic gabpentin competition.

The U.S. market for drug treatment of major neuropathic pain conditions is currently valued at $741 million, according to US Neuropathic Pain. Accelerated neuropathic pain market growth over the past two years has been driven largely by the approval of Neurontin's first neuropathic pain indication in the U.S., post-herpetic neuralgia.

The expanded label has increased use for post-herpetic neuralgia as well as additional, off-label use in other neuropathic pain indications such as diabetic neuropathy, spurring significant neuropathic pain sales growth.

While near-term future market growth will be dampened by the launch of generic gabapentin (led by IVAX in August 2004), the neuropathic pain launches of a number of new products -- including Lilly's Cymbalta (duloxetine), approved for diabetic neuropathy in September 2004, and Lyrica (pregabalin), Pfizer's follow-on to Neurontin -- will support growth at an annual rate of 17% through 2014.

The overall neuropathic pain market is expected to reach $3.5 billion in ten years, with robust growth fueled by a significant level of unmet need for effective treatments, as well as a patient population expected to grow to more than 3 million by 2014.

Worldwide, approximately 50 agents are in active clinical trials for the treatment of neuropathic pain. Promising new neuropathic pain treatments currently in late-phase clinical development for neuropathic pain include calcium channel antagonists pregabalin (Pfizer) and ziconotide (Elan Pharmaceuticals); sodium channel antagonists topiramate (J&J / Ortho-McNeil Pharmaceutical), mexiletine (Boehringer Ingelheim), and oxcarbazepine (Novartis / Kissei); glutamate / NMDA antagonists memantine (Neurobiological Technologies / Merz) and lamotrigine (GlaxoSmithKline / Bristol-Myers Squibb); cyclo-oxygenase inhibitors meloxicam (Boehringer Ingelheim / Bristol-Myers Squibb / Abbott Laboratories) and lornoxicam (Roche / Nycomed Pharma); cannabinoid receptor agonist THC:CBD (GW Pharmaceuticals / Bayer AG); neuromuscular blocking agent botulinum toxin A (Allergan); and alpha adrenoceptor agonist clonidine gel (Curatek Pharmaceuticals).

Early-phase products are also described in the full report.

US Neuropathic Pain is a recently released report from EP Publications, a service of WWMR (Worldwide Marketing Research), Inc., http://www.WWMR.com , forecasting the value of the US Neuropathic Pain market by drug class and indication.

Indications include:
-- Neuropathic Back Pain
-- Diabetic Neuropathy
-- Complex Regional Pain Syndrome
-- HIV / AIDS Neuropathy
-- Post-Herpetic Neuralgia
-- Phantom Limb Pain
-- Spinal Cord Injury
-- Trigeminal Neuralgia

ADDITIONAL REPORTS BY WWMR, INC. INCLUDE:
-- European Neuropathic Pain
-- Worldwide Peripheral Neuropathy
-- Pancreatic Cancer
-- Brand Erosion by Generics
-- Rx Brand Erosion by OTC Switches

ABOUT WWMR, INC. (WORLDWIDE MARKETING RESEARCH), www.WWMR.com:

A highly-regarded marketing research and strategic consulting firm with global capabilities. Since 1994, WWMR has provided more than 1000 insightful, proprietary studies to pharmaceutical, biotech, medical device, and diagnostics companies worldwide. Using primary and secondary research methodologies, WWMR provides insights on current and emerging markets using their expertise in product and technology assessments, forecast modeling, epidemiology projections, product launch monitoring (pre- and post-), primary marketing research and medical economic analyses.

For more information, contact:

Michelle Nordstrom
WWMR, Inc.
888-947-2339 ext. 112
Michelle_Nordstrom@WWMR.com

'Young Artists' gives expression to rehab program


YoungArtistsRehabProgram, originally uploaded by rsdscrpsnews.

Posted on: Tuesday, August 16, 2005

'Young Artists' gives expression to rehab program

BY Wayne Harada
Advertiser Entertainment Writer


When she was a volunteer in art therapy at the Rehabilitation Hospital of the Pacific, Natalie Parker, now 18, discovered the value of artistic expression.

Parker, who graduated this year from Punahou School, is not an artist herself. But her experience motivated her to organize "Young Artists Helping Young Artists," an exhibit and fund-raiser tomorrow for the Rehabilitation Hospital of the Pacific's arts program.

"I asked my friends to help, and they're donating their art to the cause," said Parker. "I enjoy art and being around it; but I am not an artist. But I'm a pretty good organizer."

One of Parker's Punahou classmates, Paige Markham, 18, who is a photographer and a painter, is aboard as a volunteer. "I think it's important to keep the artists going at Rehab," Markham said. "Coping when you have pain, it's important to have support for some kind of expression."

Parker has a friend, Stefanie Bond, who struggles with reflex sympathetic dystrophy (a chronic, painful, and progressive neurological condition that affects skin, muscles, joints, and bones) and who found solace in art while undergoing rehab. Bond donated a couple of paintings to the cause.

"She really motivated me to do something positive," said Parker, who is bound for the University of Denver restaurant school this fall.

Julia Engle, the Punahou student recovering from injuries when a 100-foot-tall Norfolk pine tree fell through her bedroom wall in Manoa last March, also participated in the arts program at rehab. The young student's experience helped motivate Parker to put on the benefit.

"At a time in life when they don't feel like doing much because of a lot of challenges, emotional and physical, the art program builds confidence and relationships," said Ellen Matsumoto, program coordinator for the Louis Vuitton Creative Arts Program.

Julia is about to go back to school. "Her progress was amazing," Matsumoto said.

Reuben Young, an artist and a sculptor, is the primary instructor in the on-site program, which is open to anyone who has been in rehab. Afternoon classes Mondays and Fridays welcome outpatients, who return to improve their physical dexterity, tap their creativity and work on hand-eye coordination.

"It's very therapeutic," said Matsumoto. "Most of the (patients) are not artists; the thing I often hear is 'I don't have talent, I have no skills.' But those who never thought they were able to create a work of art find it amazing that they can."

Wednesday sessions are held for in-house clients.

"What's nice is that they're here (in the art program) because they choose to be," said Matsumoto. "Some are fast and furious; others take some time to finish a project. But we've seen oils, acrylics, mosaics, paperwork, clay projects and even sculpture."

Rehab art hangs at the facility, 226 Kuakini St. in Nu'uanu. The art also has been shown at community events such as "Taste of Honolulu" and the Senior Fair at Blaisdell Center.

"What's really wonderful is that once the artists get started, many of them don't want to quit. We (the staff) have to stay on and let them work as late as possible," Matsumoto said.

Parker said visiting the hospital cemented her determination to do the benefit. "The patients are so awesome, some painting even with the brush in their mouth," she said. "They really express themselves despite their disabilities."

Parker called art teachers in several local schools to inquire about potential artists who might share her support of the rehab program. She also had artist friends who rallied.

"I initially wanted to stage the event in an art gallery," said Parker. But because she had worked as a hostess at Compadres, her former boss, owner Rick Enos, provided the space.

Artists are setting their own prices for the works; some are donating the full sale receipts to Rehab, others will give a portion. Parker and the rehab program are also receiving assistance from artist Peggy Chun and her organization, which will sell prints to benefit the program and raise funds for Chun, who is coping with Lou Gehrig's disease and mounting medical expenses.


For the original article online, click here: http://the.honoluluadvertiser.com/article/2005/Aug/16/il/508160303.html

Sunday, August 14, 2005

Chronicling pain helps woman cope with injury


StPetersburgTimes, originally uploaded by rsdscrpsnews.

Chronicling pain helps woman cope with injury

A fall five years ago left the Inverness resident in constant pain. She hopes her self-published book will help others who suffer.

By JORGE SANCHEZ, Times Staff Writer
Published August 1, 2005

INVERNESS - Jan Carole wishes that life came with a pause button. Just like on a DVD player. Push a little button and the action stops.

If she had that pause button, she might have been able to avoid a crippling injury five years ago. The fall at a motel broke her leg and caused unrelenting pain that remains today.

Carole's condition is called RSD/CRPS - Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome.

How Carole describes it:

"Right now, it feels exactly as if there is a hot iron resting on my leg," she said during a recent Times interview. "Now, for most people a hot iron pressed against their leg would cause them to jump up, but since I know there's no iron there, I have to just take the pain and continue with this conversation."

As a means of coping with the pain and creating a road map for others suffering from RSD/CRPS, Carole recently self-published a book, Anatomy of Pain . . . Coping with RSD/CRPS .

The book deals with Carole's experiences with the fall and the ensuing medical, psychiatric and legal issues.

In June 2000, Carole and her husband, Ed Dwyer, were enjoying a weekend getaway in Daytona Beach.

After dinner, they checked into a motel. First they went to the spa. It was full, so instead they decided to go for a walk along the beach.

Leaving the spa, she thought she was walking on a level surface.

"It was dark, and the only lights came from those small lights by the plants," Carole said. "I couldn't tell the platform was raised above the sidewalk."

She estimated the fall was "two or three stairsteps" in height.

The description from her book is familiar to anyone who has suffered a fall injury.

"There, between paces, between heartbeats, in the blink of an eye, one life ended and another began. How is that possible . . .?

"As I moved forward and put my foot down, there was nothing under it."

Then came the sound.

The sound of a chicken bone snapped . . . a green twig split . . . a fresh stalk of celery . . . a pecan or walnut cracked open . . . .
"Take all these sounds and somehow put them together in some sort of sound blender, combining them into one sound, like a single note from a well-trained choir, that was the sound I heard . . . Making it worse, I knew it was coming from my body, from within me . . ."

The compound fracture caused her pain nerves to go into permanent attack mode. And it didn't stop there. A few months later, although she was still able to work, she suffered a stiff shoulder.

Workers' compensation covered the surgery to relieve her pain.

"But what I didn't know is that surgery is an open invitation for RSD to spread," she said. "And that the shoulder and neck is the worst area for this to happen.

"The surgery freed my frozen shoulder, but shortly after, I couldn't even stand to have clothing touch it."

Battling through the pain, Carole discovered that writing, even a few words at a time, was cathartic.

"It started as a relief valve just for me," she said. "I thought if I can put it in written words, just get it out of my system, I could feel better."

The book goes in depth to provide the essentials of pain medications, orthopedic treatments, psychiatry and interpersonal relationships, as they affect an RSD patient. Carole said her research shows that nationwide, about 6-million people have RSD.

"That's not a huge number," she said. "I've never actually met another person with RSD, although I've chatted with them online. So even doctors don't always know a lot about this condition."

As an example, many health professionals, adopting a "use it or lose it" philosophy, will prescribe physical therapy for RSD sufferers.

"That's not always good. RSD is a condition that can actually be made worse by too much physical therapy. You have to know your body and be very careful not to do too much," she said.

When her leg pain became too much to endure, she considered amputation. But the doctors told her the nerve endings would still attack her and she would suffer from phantom pain.

She wrote the book as a self-help experience and to help others.

"I wrote it so nobody else feels like "I'm the only one that feels this way"', Carole said.

Carole will have book signings at the following locations:

--11 a.m. to 1 p.m. Saturday at Poe House Books, 657 N Citrus Ave. in Crystal River

--10 a.m. to 2 p.m. Aug. 13 at Awesome Books and Gifts, 2780 N Florida Ave. (U.S. 41) in Hernando

--10 a.m. to 2 p.m. Aug. 20 at Rainy Day Editions, 202 Tompkins St. in Inverness.

Anatomy of Pain is available at Amazon, Booksamillion and other online booksellers. Visit Carole's Web site at www.jancarole.com for other RSD links.

--Jorge Sanchez covers arts and entertainment in Citrus County. Call 860-7313 or e-mail sanchez@sptimes.com

For the original story online, click here: http://www.sptimes.com/2005/08/01/Citrus/Chronicling_pain_help.shtml

A Life Of Torture


The Sunday Times, originally uploaded by rsdscrpsnews.

A life of torture

Insurance companies are spending some of their record profits on selling the image that they care. But TV ads like the one of a claims manager interrupting her wedding to take a phone call are an affront to scores of people like Ruth Clarke.

RUTH Clarke pleaded with her doctor. She wanted to walk out the door, with the wires attached to her spine still trailing from her back.

After four and a half years living with unremitting pain – at times, unbearable – she had found a treatment that worked. Only to have it snatched away.

There had been little to lift Ruth's spirits since the fateful day in November 1999, when part of a stage at the Perth Entertainment Centre collapsed on her. But she hit all-time rock-bottom late last year.

In a cruel tease, the insurer which had paid for the week-long trial of a spinal cord stimulator sending pulses to her damaged left foot, said it wouldn't pay for the device to be implanted under her skin.

Ruth was given the devastating news by her pain specialist, who through gritted teeth, removed the temporary device, worth $4500, and threw it in the bin. The young woman panicked.

"I was back at square one again with no real pain relief," she said. "I said to the doctor, `What if I just leave your rooms and you just say I ran off or that I refused to let you pull the wires out?' But he said he couldn't because there was a risk of infection. He was very upset when he pulled the wires out.

"It felt like the bottom of my world had fallen out. I had never expected the trial to work as well as it did. And then it had never crossed my mind that the insurance company wouldn't pay for the operation."

Ruth, 31, is more than just a victim of an accident that wasn't her fault. She's also an innocent victim of WA's adversarial workers' compensation system, in which insurers get away with treating severely injured people like criminals.

Like many, she thought she was alone in her experiences until she read an expose last year by The Sunday Times into insurer dirty tricks. Now she is fighting back.

But her ordeal, which has included harassment by private investigators, has exacted a mental toll. She has considered ending her life and a suicide watch by her parents, Frank and Susan, at their Tapping home – checking on her at regular intervals at night – has rebounded on their own health. Susan is on medication for stress.

Add to that the distress of seeing their daughter's spirit crushed.

Frank has written to Seven Network boss Kerry Stokes, asking him to intervene in the case. Ruth had worked as part of the stage crew for several shows at the Perth Entertainment Centre. But after the accident, in the lead-up to the Happy Days production in 1999, she claims the network, which owns the centre, didn't want to know her.

She was 25 at the time of the stage collapse and felt she had an exciting future in the entertainment industry. She dreamed of a career as a set or lighting designer.

Elton John had showered Ruth with flowers after one show and she had been invited to join magician David Copperfield's Australian tour. She declined because she was happy where she was.

In the accident, Ruth and other crew were asked by a supervisor to help move the guitar-shaped stage by sitting underneath and kicking a metal frame that supported heavy panels. One panel, weighing 120-150kg, fell on Ruth.

Months later, WorkSafe accused the Perth Entertainment Centre of failing to notify it of the accident and failing to investigate it. "There are so few (safety) systems in place that it is reasonable to conclude that the general duty of care provisions are not being met," another notice cited.

Ruth returned to the centre soon after the accident and did unpaid work to "keep her face in there". She was frightened that she wouldn't have a job to go back to when her foot improved.

But after WorkSafe slapped several notices on the centre for safety breaches, suspicion as to who complained to the authorities wrongly fell on her. Some colleagues became openly hostile, calling her Quasimodo because of her post-injury gait. One manager advised her to go on the dole and some went as far as blaming her for the centre's closure in 2002.

Throughout, her foot injury showed no sign of improvement. "I would be up all night just holding my foot really tight because of the pain," she said. "I felt total frustration and anger. I know that I have a high pain threshold, but there have been times when I just wished that I could chop it off."

An orthopedic surgeon diagnosed Reflex Sympathetic Dystrophy, a neurological syndrome characterised by disabling pain. Her foot is particularly sensitive to light touch and the cold.

Specialist Tom Berrigan tried radio frequency treatment and other injections and medications, but they provided no real relief.

Ruth said he was reluctant to opt for a surgical implant because of her young age. But it was one of the few things left to try.

The entertainment centre was insured by HIH. But after its collapse in 2001, another insurance company, which acquired HIH policy renewals, took on the management of Ruth's claim.

It stopped meeting the cost of her medication from January 2004. She had reached the limit of medical expenses that the insurer was required to meet under the law.

She claims she wasn't notified and was shocked when she went to her chemist to collect her medication. "The pharmacist said, `Sorry, but we've been told that your medications aren't being paid for any more'."

Ruth was entitled to apply for an extension of medical funds to meet the cost of the implant, recommended by one of the insurer's doctors, as well as her own.

The operation, which included putting a battery pack into her stomach to be connected to the spinal-cord stimulator, was costed at $28,000.

Ruth's mother, Susan, put off a trip to see her terminally ill mother in Northern Ireland, from where the family emigrated in 1982, because she was told her daughter would need help around the home during the week-long trial with the stimulator.

The trial was a success, but then came the bombshell that the insurer did not want to pay for the operation. The same night her grandmother died.

Frank said his daughter would have been treated with less cruelty if she was an animal. Ruth's GP, Jeff Veling, was also appalled.

"To put her back into agony was absolutely disgusting," he said.

A month later, after a meeting on the issue at WorkCover, the insurer agreed to pay for the surgery, minus the cost of the trial. The shortfall still hasn't been paid for.

Ruth said the stimulator was on its highest intensity setting and would need replacing in four years. But its success meant she could wear a shoe on her left foot for the first time since the accident.

"It's nice now to be able to catch a glimpse of myself in a shop window and not feel gutted because I am walking with such a bad limp," she said. "The implant stimulates the nerves and it feels like pins and needles. I still have some pain that comes through on cold days, but it's no longer that feeling of `I can't stand this any more'."

Ruth was so afraid of the operation being delayed that she hid a 10mm hole in the back of her right knee from a white-tip spider bite that became infected.

"I was too scared to tell anyone because I didn't want to be told that I couldn't have the operation done," she said.

Four years of not being able to walk properly has caused back, neck, and hip problems, but she cannot afford physiotherapy.

She is reliant on the charity of her doctors and specialists, who have waived their fees for the past 18 months.

"It's embarrassing to go to the doctor and say you cannot afford to pay them," she said.

Her family dentist did reconstructive work at no cost after medication eroded the enamel on her teeth.

Frank has offered to sell the family home to pay ongoing medical bills. It might not come to that if Ruth is successful in court. She has legal action afoot against the Seven Network and the show's producer, Dainty Consolidated Entertainment.

She claims bosses knew there were faults with the stage before it fell.

Ruth's lawyer, Sukhwant Singh, alleged that a co-worker overheard a supervisor say later that he knew two panels did not have supporting lugs attached.

Ruth received her first apology over the accident this week.

Within days of the implant surgery, one of the defendants seized on its success in a bid to strike out her legal action. Under WA's workers' compensation laws, injured people need to demonstrate a permanent bodily disability of not less than 30 per cent to be allowed to sue negligent employers.

"They said my percentage should be lowered because I was getting relief from the stimulator," said Ruth, who fought the move in court and won.

Dr Veling said he was annoyed by the whole workers' compensation merry-go-round. Patients are sent from one insurance doctor to another and the process can drag on for years – six years so far in Ruth's case.

"I have asked for the insurer to meet with me and discuss the case," the GP said. "I have also sent them reports from time to time. But I have had absolutely no feedback."

Last year, this newspaper exposed the worst practices of hired-gun insurance doctors, who write biased reports in exchange for huge fees.

Ruth was sent to one such doctor, whose report claimed there was nothing wrong with her.

"He was abrupt, patronising, condescending and bullying," Ruth said. "He wasn't interested in seeing my X-rays. I was in tears when I left. He has written reports which are the complete opposite of all of my other medical reports."

The doctor, an orthopedic surgeon, wrote that her problems were psychological only.

"To say that was beyond his level of expertise," Dr Veling said. "Ruth is a very genuine person who was in a lot of pain. To be honest with you, I thought she was going to commit suicide (before the implant)."

Dr Veling said he looked forward to the day he could face these doctors in court.

Ruth's pain specialist, Dr Berrigan, was also scathing.

"There are problems with certain practitioners who work exclusively for insurance companies and who can be relied upon to produce reports which favour insurance companies at the expense of patients," he said.

"Some of these doctors fly in from interstate just to give these reports and some are providing reports on areas (of medicine) that are not their specialty. And the system accepts that."

Ruth was sent to one insurance doctor for a 9am appointment in Fremantle. The doctor was based in Perth, closer to her northern suburbs home, but she had to travel the extra distance in rush-hour. While not a major imposition, she felt it was symptomatic of an overall game plan to make her life more awkward and encourage her to give up her claim.

Her father is also damning of the merry-go-round.

"Ruth has had to undergo numerous reviews by insurance companies, their doctors and their lawyers," he said. "In the reviews, she has been made to feel bullied, degraded, reduced to tears and made to feel more like a criminal than a victim."

Frank has confronted private investigators engaged by the insurer to conduct surveillance on his daughter. He has been lied to, sworn at and his back garden has been trampled.

"It's like being stalked," Ruth said. "It's another thing to make me feel horrible, like I have done something wrong."

Her lawyer, Mr Singh, said the workers' compensation system was set up to help people like Ruth, but the reality was that it failed them.

"She's had one hell of a fight in the system. If someone so obviously genuine can have such a rough ride . . . God help everyone else," he said.

Ruth insists she tries to be positive.

"I try to go to the gym as often as possible. I try to go for walks. I know that I am doing the best for myself physically," she said.

She has a talent for art and won a couple of prizes last year.

"The feeling from that is brilliant when you have been made to feel worthless for so long," she said.

But it's still a far cry from where she was six years ago.

"I loved my job and the people that I worked with. I went from being very active and very sporty to nothing after the accident," she said.

She used to have her own unit and has lost her independence.

"I don't know what my future is," she said. "I know that I have large medical bills hanging over me and my savings are gone. I feel like I have lost everything.

"I can't even imagine dating now. I can't imagine getting married now. My temper is a lot worse. My mum and dad have copped it a few times.

"The insurers are obviously thinking more about the people who have shares in their companies and in getting me to give up, to make me quit."

A spokesman for the insurer said: "I am satisfied that the claim has been managed professionally taking all the circumstances into account . . . I think we have managed the claim as sensitively as we can and within the regulatory framework in which we operate."

He said many of Ruth's frustrations were better directed at the adversarial nature of the workers' compensation system than the insurer's conduct.

For the original story online, please click here: http://www.sundaytimes.news.com.au/common/story_page/0,7034,16102111%255E2761,00.html

The Sanford Herald


The Sanford Herald, originally uploaded by rsdscrpsnews.

A tough decision
By GORDON ANDERSON

SANFORD - When Kim Butts started as Lee County's elections director in September 1988, she said the elections office was "in a vault at the register of deeds office."

"We had room for one table and maybe two people," said Butts, who retired from her post last week. "We've come a long way and I'm proud of our record."
Butts retired because over the last six months she's been suffering from reflex sympathetic dystrophy (RSD), a rare nerve disorder that's caused her lingering pain in her left leg.

"(RSD) is brought on by a trauma of some sort, and it can be as little as having your finger pricked or as big as a surgery," Butts said. "That's what we think happened to me. I had surgery in December."

Butts said that immediately after waking up from that surgery, she knew something was wrong.

"I had no control over my left leg. It was swollen, and my foot was turning red," she said. "That pain was unbelievable. Even now it feels like I have my foot in a bucket of white hot coals."

Butts said the pain has stuck with her over the last several months, and was the deciding factor in her retirement.

"It's taken me six months to come to this decision," she said. "And it was such a hard decision. I haven't even been down (to the elections office) to get all of my things."

"But it wasn't fair to (then-Deputy Elections Director) Nancy Kimble, it wasn't fair to the board of elections and it wasn't fair to the people of Lee County," she continued. "So I stepped down."

Despite the hard decision Butts had to make, and the lingering pain of her condition - which she described as "a progressive disease with no known cure" - Butts said she is facing things with her head up.

"Sure, there are days when I've sat here and cried - but I'm not going to do a lot of that. I'm not that kind of person," she said. "I'm not giving up."

Looking back at her tenure as elections director, Butts said the most gratifying thing was "working with the people in Lee County. The employees of this county really rallied around me (when I got sick) like you wouldn't believe.

"Someone once told me that they never knew which political party I belonged to, because I worked for both parties equally," she said. "That's probably the highest compliment I've ever been given."