Tuesday, January 30, 2007

Talk brings relief

Mary Briggs, who suffers from a rare disease known as chiari 1 malformation, wants to find others like her so they can talk and share information.



Talk brings relief
Support groups help people cope with illness, but it can be difficult to find or start one
By Tracy Wheeler
Beacon Journal medical writer

If she had diabetes, or heart disease, or weight-loss surgery, Mary Briggs would know where to turn for support.

All those conditions -- and many others -- have their own local support groups; in most cases, more than one. But Briggs' condition? Nothing.

``I just need to talk to somebody,'' said the Springfield Township woman. ``Everybody has a support group but my disease.''

Her disease is chiari 1 malformation, a little-known structural defect of the cerebellum, the part of the brain that controls balance.

The difficulties of chiari (pronounced key-ARE-ee) go far beyond balance and dizziness, though, as a lack of space at the base of the skull pushes the cerebellum and brain stem into the upper spinal canal, placing pressure on the spinal cord.

For Briggs, 39, the dizziness progressed to strokelike numbness on the left side of her body, indescribably severe headaches, leg weakness and, now, constant, debilitating pain that even five medications a day can't tame.

And that doesn't take into account the anxiety that comes from misdiagnoses; from being told in the emergency room that the CT scan doesn't show anything, so go home; from having your pillow wet with leaking spinal fluid after surgery.

If only she could talk to others who had already been through all of that, ``it would probably make it easier to deal with,'' Briggs said. ``You could say, `Hey, I've been through that and this is what I did,' or `This is what happened to me.'

``But I don't know how to go about starting a support group. It takes more than one.''

Certainly, Briggs isn't the only one who feels this way. Despite long lists of support groups offered by local hospitals and community organizations -- everything from depression to grief to attention deficit disorder to a whole host of cancers -- there are still many diseases that have no outlet.

Forming a group

Karen McCann, of Marion, was once in Briggs' situation, until she decided she would start a support group of her own after being diagnosed with chiari in 1999.

Even less was known about the disease eight years ago, so instead of trying to start a chiari-centered support group, she broadened the scope to include anyone with chronic pain.

``If you have chronic pain, it doesn't matter what you have. You still have to deal with constant pain.''

And as it turned out, two of those who signed up happened to have chiari.

McCann started by placing an ad in the local newspaper and then being interviewed on a radio station morning program. She talked to doctors, psychiatrists and counselors, asking them to spread the word and hand out brochures.

Eight years later, the support group is still intact, attracting people with rheumatoid arthritis, fibromyalgia, back surgery, Reflex Sympathetic Dystrophy Syndrome and other pain-related disorders. The group invites doctors to speak, holds roundtables and discusses everything from coping mechanisms to filing for disability.

``Having the support of other people who have to deal with chronic pain is very beneficial,'' McCann said. ``Talking about it and getting it out, rather than keeping it in, keeps you from getting depressed -- and I was depressed when I started the group.

``People around you try to understand, but in all honesty, they don't. The only people who know are those who experience it themselves.''

Benefits of a group

Research has found that belonging to a group and talking to others with common problems can alleviate mental stress, making treatments more effective.

But starting a support group from scratch is a very difficult proposition. Even Mary Beth Husseini, a mental health clinical nurse specialist at Akron General Medical Center, finds it tough, and she has the built-in support of a hospital staff and marketing.

Sometimes, even ideas that seem like a slam-dunk fail to attract participants. At a previous job, Husseini tried to start a support group for women whose husbands were cheating on them online. She did several interviews on Cleveland TV. She was invited to an international symposium. But the support group wasn't able to establish itself for long.

Add a chronic disease to all of that, and the goal of starting a group becomes even tougher.

``That's a lot of legwork if you're not feeling well,'' Husseini said.

For some people with rare diseases, the Internet may offer support through national or international organizations devoted to those diseases. Chiari, for example, has a Web site called www.conquerchiari.org, with an active e-mail discussion group offering support and encouragement.

Briggs, though, needs more.

``The Internet, I don't trust it,'' she said. ``I can tell by looking at you, by listening to you, if you've been through what I've been through. I need to be able to see you.''

One important source in starting a local support group may be your doctor, said Dr. Robert Flora, vice president of the medical staff at Summa Health System.

``If it's something real rare,'' he said, ``the doctor can say, `Hey, we have a patient with this, we can call her and see if she's interested in this.' We can broker that kind of meeting.

``We've run into situations like this. Even our interstitial cystitis support group, it wasn't started in Akron until one of our patients started it.''

Not all doctors will be so helpful, though. The office staff has little free time, Husseini said, and many medical offices are paranoid about violating HIPAA, the federal Health Insurance Portability and Accountability Act that maintains medical privacy.

Starting tips

McCann suggests the following steps in starting a support group:

• Give your group a name: Giving the group a title sounds professional and enables the public to identify the group in advertising. McCann chose the name Marion Area Chronic Pain Group for her group.

• Find a location: Many places are willing to donate a room for such a group. Check hospitals, churches, city halls and libraries for a conference room that might be available.

• Decide on the date and time: Before publicizing the group, set a weekly day and time that your group will be able to meet, making sure the schedule suits the facility you'll be using.

• Advertise: Contact local media about free listings. (The Beacon Journal runs a free listing of health-related meetings every Tuesday.) Also, post notices on hospital bulletin boards and doctors' offices, if allowed.

Briggs is hoping a local chiari support group can be born soon. She needs it. And she believes her husband, Tom, needs it.

Though Tom has been extremely supportive by taking over all the household chores and boosting her emotionally, there's only so much he can truly understand about how she feels. Plus, she said, he's now forced to carry an unfair burden in the marriage.

``I know this is hard on him,'' she said. ``It's hard on me. I used to be a very independent person. This disease has taken many things from me.''
Anyone interested in forming a support group with Briggs can contact reporter Tracy Wheeler at tawheeler@thebeaconjournal.com or 330-996-3721.





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Cancer can't stop party


Randy Wallen, right, and his wife, Virginia Wallen, in their Visalia home. The Wallens have thrown a Christmas party at the Visalia Nursing and Rehabilitation Center for the past 17 years. They couldn't do it this last year because Randy was being treated for bone and lung cancer, but community members came together and helped them with the party



Cancer can't stop party
Couple's tradition continues

For the past 12 years, Randy and Virginia Wallen have been making the holiday season bright for the residents of the Visalia Nursing and Rehabilitation Center by throwing a Christmas party.

But this Christmas season, that party almost didn't happen. Randy Wallen, 68, was diagnosed with bone and lung cancer on Nov. 23. Virginia Wallen, 62, couldn't handle the party planning and community gift donations alone because she suffers from reflex sympathetic dystrophy in her arms and hands.

The condition causes the nerves to misfire and sends constant pain signals to the brain. Any extra energy she had was focused on her husband.

"All I've had on my mind the last few months is taking care of him," Virginia Wallen said.

When the staff at Visalia Nursing heard, there was no way they were going to let a year go by without a Christmas party for residents, said Kim Cribbs, activity director for the center.

"When I found out [about Randy Wallen's illness], I said 'We have to still have a party,' " Cribbs said.

Every year, the Wallens have called on the community to donate items for the residents of the long-term care facility.

They weren't asking for anything extravagant, just every day items residents may need — an extra pair of warm pants or a package of crackers for a snack.

"They get $35 a month to take care of their personal needs," Randy Wallen said.

In past years, the donations were dropped off at the Wallen's Visalia home, where the couple wrapped the gifts before delivering them to Visalia Nursing.

This year was different. Randy Wallen went to Kaweah Delta Hospital's emergency room on Nov. 21, after breaking his hip while visiting his sister's Visalia home.

He said it snapped in two places and his sister needed to call an ambulance.

"I've never seen anyone in that much pain," Virginia Wallen said.

The next day Randy Wallen had surgery. Doctors put a long steel rod in his leg to help it heal.

The day after the surgery, he was diagnosed with the bone cancer in his hip and with lung cancer.

Randy Wallen stayed in the hospital for days undergoing physical therapy, so he couldn't take donations or help plan the Christmas party, he said.

The planning and execution fell to Cribbs, who took donations at the nursing home and got the residents prepared for the party. Some of the residents don't remember the previous years' parties, but that doesn't stop them from looking forward to it when they are reminded.

"Once we start letting them know about it, they get excited," Cribbs said.

Even though the Wallens could not help plan this year's party, when Dec. 20 came around, they were not going to miss it.

"I was going to go even if I had to go in a wheelchair," Randy Wallen said.

And he did.

The Wallens don't just visit Visalia Nursing once a year for the Christmas party, they perform on Wednesdays with a singing group from The Free Will Baptist Church in Farmersville.

They also bring children from the Mineral King Elementary School, where Virginia Wallen volunteers, to sing for residents. Virginia Wallen said she loves children, and she shows it partly by writing children's books involving children with disabilities. Her third book is due out any day, she said.

Randy Wallen has been staying at home since mid-December, receiving treatment for his cancer and letting his hip heal.

He isn't letting the illness get his spirits down.

Physical therapists have told Randy Wallen he is making rapid progress toward walking without assistance, considering how bad his break was.

While the Wallens are concentrating on Randy's recuperation, they miss singing at Visalia Nursing and Kaweah Manor Convalescent Hospital and Westgate Gardens Convalescent center, two other nursing homes in Visalia at which they frequently volunteer.

And the residents miss the Wallens.

"Even one of our residents who is not that alert," perks up after staff reminds the residents it is Wednesday and the Wallens are coming to sing, Cribbs said.

  • The reporter can be reached at gubbeloh@visalia.gannett.com.




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    Saturday, January 27, 2007

    BoxHeart casts wide net for exhibit


    BoxHeart casts wide net for exhibit

    By Kurt Shaw
    TRIBUNE-REVIEW ART CRITIC
    Sunday, January 21, 2007


    If the miniature mummy in the window doesn't grab your attention, then the massive sculpture made of 1,118 wood chips in the middle of BoxHeart Expressions gallery in Bloomfield most certainly will.

    The wood-chip sculpture is by Bruce Sykes, who lives near Indiana, Pa., but the mummy is by Alberto Almarza, of Chile. They are just two of 22 artists from 10 countries chosen for inclusion in BoxHeart's sixth annual exhibition, "Art Inter/National: Here and Abroad."

    Having been included in more than a dozen Web site listings of exhibition opportunities for artists from all over the world, this iteration of the international competition netted entries by 77 artists from around the globe, more than ever before.

    But quantity doesn't equal quality, says Josh Hogan and Nicole Capozzi, co-owners of BoxHeart Expressions. So this year, even though three more countries are represented than last year, there are fewer works by fewer artists.


    The reason is simple, Capozzi says: "We just try to pick the works that we think will make the best show. There are some entries that are great, but they just don't fit with the other things that we selected based on certain themes."

    Although there is not one overriding theme to the exhibition, it is a cohesive show with works seeming to flow from one to the other, either stylistically or thematically. Even the works in the window -- such as the aforementioned mummy, as unusual as it is -- don't seem out of place flanked by watercolor and charcoal portraits of gaunt prepubescent children by Ohio artist Diane Fleisch-Hughes.

    This is a juried exhibition, however, with the best-of-show winner being awarded a solo exhibit that follows the next "Art Inter/National." Which means that next month, visitors to the gallery will find on display the work of German artist Petra Voegtle, last year's best-of-show winner.

    This year's winner is New York fiber artist Elin Waterston, who is represented here in three small quilts that combine imagery of birds and butterflies with various fabric swatches and quilting techniques.

    Voegtle is represented in this show, too. Also a fiber artist, she shows in two silk paintings from her "Magic Landscape" series how magic exists and surrounds us everywhere. Through the delicate representation of desert and cave, respectively, "Dryland" and "Underworld" give the impression that every space is sacred, fragile and delicate.

    Voegtle is not the only previous winner included in the exhibition. Reinhardt Sobye, of Norway, was last year's first-place winner. Two large-scale digital prints -- "Dreamscape I" and "Dreamscape II" -- show how living among Norwegian fjords, which are scarcely populated, increases the feeling of an approaching apocalyptic future. Both combine dramatic landscape photographs with ethereal villages superimposed on them -- in essence, depicting the human footprint in diabolical opposition to the Earth's natural beauty.

    Whereas Sobye presents man's advancement at the cost of ecological devastation, Russian artist Victoria Goro-Rapoport prefers to deal with man's desire to build utopia, particularly as it fits within the context of the failed utopian vision that was communist Russia. Classically themed, her two large-scale etchings on display here -- "Sinking of the Empire" and "Stepping Out" -- combine architectural renderings and classical representations of the human figure into idealistic yet self-destructive models of work and progress.

    Not all of the artists in the exhibition harbor such worldly views. Looking inward, Philadelphia artist Gerard DiFalco focuses on the inner self, particularly as it relates to the field of phenomenology.

    DiFalco suffers from RSDS, a disturbance in the sympathetic nervous system that affects the hands and feet. Thus, in his four-paneled mixed-media piece "The Seasons of the Minotaur," he depicts himself as a minotaur suffering from different forces yet striving to maintain balance, particularly as it relates to the visual versus the conceptual and the physical in contrast to the cerebral. In essence, using his own art is a form of healing, orchestrating both the left and right hemispheres of the brain in the process of creation.

    Not all works are as deep. Italian artist Franco Meloni's vibrant acrylic painting "Estia" depicts a jester-like character in expressive color; Ohio artist Dan Gerdeman's two small comical paintings, "Imprint: Gordon Light Foot" and "Remember to Remember Me," present a lighthearted look at life in a large family; and Christiane Middendorf's three abstract paintings, "Bird," "Bassisstation" and "Samenkorn I," reflect the golden glow of her vibrant native city of Berlin.

    All in all, this show is a tour de force of international talent and a welcomed addition to a city that already boasts one of the world's most well-respected international art exhibitions, the triennial Carnegie International. At least with this exhibition, locals get to see international art once a year. But you'd better be quick, since the show will end Feb. 3.

    Kurt Shaw can be reached at kshaw@tribweb.com.




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    Friday, January 26, 2007

    'I got elephantiasis in the UK'


    Trudy's leg had to be amputated



    Sunday, 21 January 2007, 00:40 GMT
    'I got elephantiasis in the UK'
    By Jane Elliott
    Health reporter, BBC News


    Elephantiasis is an ugly condition, which disfigures and disables about a 120 million people globally.

    It produces huge, unsightly swellings on the limbs, and in some cases the genital area.

    People with the condition can find their lives are ruined. Many cannot walk, or work and some become social pariahs simply because of the way they look.

    Parasitic worm

    Overwhelmingly, elephantiasis affects people in tropical countries, but Trudy Lapinskis is a rare example of somebody who has never been to a tropical clime, and yet is afflicted by the condition.

    In tropical countries elephantiasis is usually a symptom of a disease called Lymphatic Filariasis.

    This is caused by a parasitic worm which breaks down the body's lymphatic system.

    Trudy does not have lymphatic filariasis. Her elephantiasis is the result of an infection which is thought to have set in after a minor accident.

    She banged her back on a table and developed complex regional pain syndrome (or reflex sympathy dystrophy RSD) - a chronic pain syndrome that is notoriously difficult to diagnose and treat.

    The intense pain spread to other parts of her body, affecting the skin, bones, circulatory and neurological system.

    She went from doctor to doctor for help. One medic lanced a swelling on her foot, an infection set in and Trudy's condition worsened into elephantiasis.

    "My foot then swelled into gigantic proportions".

    Her leg became so swollen and infected that she was unable to walk and the doctor treating her, describes her case as the worst she has ever seen.

    From being a fit and active dance enthusiast Trudy, 45, from Peterborough, is now confined to a wheelchair.

    Her leg has had to be amputated as the infection in her leg threatened her life, but now the elephantiasis has spread to her other leg and arms and she still feels the phantom pain in her amputated limb.

    Chronic pain

    "There is no doubt it is elephantiasis," she said.

    "People say to me that you have to go to certain countries for it to be elephantiasis. In those cases a parasite breaks down their lymphatic system, but my lymphatic system has also broken down.

    "I want people to know that you don't have to go there to be affected.

    "I don't know of anybody else in the UK with it, but there are some people in America so I went there to see a doctor for help."

    "I am in terrible pain 24/7. It is the most chronic pain.

    "According to the McGill pain index, arthritis has a pain rating of 18, a fracture 19, cancer 26, chronic back pain 27 while incredibly RSD has a rating of 42.

    "And my condition is getting worse and worse."

    Trudy said she is stoic about her condition, concentrating on the positives such as her poetry, but she said she can't help but be affected by people's reaction to her deformities.

    "I do try and ignore people when they stare, but there was one group of people in a London hospital who really upset me.

    "They started laughing and saying things and that did make me cry.

    "There is a lack of awareness about the condition RSD.

    "I don't want to scare people but it can in very rare cases develop into elephantiasis."

    'Unusual case'

    Dr Joan Hester, consultant in pain management at King's College Hospital, London, who currently treats Trudy confirmed that hers was a most unusual case.

    "I have not known anybody else develop the same condition as this in England.

    "RSD does not usually become so severe or develop like this."

    Dr Hester said Trudy's case had become so bad because she developed a low grade infection caused by the lancing of the swelling.

    "This is the worst case I have ever seen."






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    Thursday, January 25, 2007

    Management of complex regional pain syndrome type II using lidoderm 5% patches

    Management of complex regional pain syndrome type II using lidoderm 5% patches

    British Journal of Anaesthesia 2007 98(2):261-262; doi:10.1093/bja/ael343

    © The Board of Management and Trustees of the British Journal of Anaesthesia 2007. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org

    A Karmarkar1,* and I. Lieberman2

    1 Department of Anaesthetics, Hope Hospital, Salford M6 8HD, UK
    2 Department of Anaesthesia and Pain Medicine, Wythenshawe Hospital, Manchester M23 9LT, UK

    * Corresponding author: E-mail: acarrom@yahoo.co.uk

    We report a case of a patient developing complex regional pain syndrome of the upper limb after a laceration injury with glass. The pain in his hand was resistant to all conventional modes of treatment. The pain reduced dramatically after a diagnostic lidocaine infusion and the reduction in pain lasted for 3 days. Following this the patient responded well to lidoderm 5% patches and achieved 80% pain relief with an improved range of movement in his hand.




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    Sunday, January 21, 2007

    Kathy Kasey Got Hurt Working At Home Depot ...



    Limping Reform

    Kathy Kasey Got Hurt Working At Home Depot And The Store Is Skimping On Medical Treatment. Proposed Fixes To Workers' Comp Law Won't Be Enough.

    January 18, 2007

    By Meir Rinde



    Home Depot worker Kathy Kasey was moving a washing machine for a customer one day a year and a half ago when she twisted her foot badly. Kasey, who was 59, didn’t worry too much about it. She thought if she went home and rested her feet she’d be okay.

    “Sometimes you’ll twist your foot funny and you’ll get a horrible pain, but it goes away in an hour or so,” said Kasey, who worked at the Home Depot in Wallingford. “But it didn’t go away.”

    The store sent her to its favored local clinic, which diagnosed a twisted ankle. After a week she got crutches, and then physical therapy, but she says the clinic doctor never even touched her foot, and Home Depot’s insurance company wouldn’t let her visit an orthopedist. Her leg remained swollen, but even so she kept working, dragging herself along the store’s long corridors.

    It turned out she had a fracture. But it wasn’t until almost a year after she first hurt herself — a year of fighting with the insurance company, of shuttling back and forth to workers’ compensation hearings — that she finally got extensive surgery, surgery that was “much more” than what she would have needed if she’d gotten proper treatment from the start, she says. Then the insurer balked at paying for a home health aide, even though she was immobilized and lives alone, she said.

    In a statement, the Home Depot said state law allows it to give employees a list of doctors from which they may choose, and it defended its decision-making processes, saying, “Request for surgery is subject to utilization review, not dissimilar to requests made through one’s personal health insurance plans for surgery related to non-work related injuries.”

    Workers’ compensation does reportedly help many people. At a legislative committee meeting last week, Workers’ Compensation Commission Chairman John Mastropietro said there were more than 53,000 claims in Connecticut last year, 90 percent of which were handled without the state even getting involved.

    But that still leaves thousands of claims that involve some kind of dispute every year, including many where workers feel like they’re victims of a system that allows employers and insurers to harass them, to accuse them of lying about their injuries, and to throw up obstacles to proper treatment, all in the name of saving money.

    “They feel like they’re being laid siege to by the other side,” Rep. James O’Rourke told Mastropietro at the January 9 meeting. “How often can they be called back for medical reviews and surveilled and dragged back to continued hearings, on and on?”

    Sen. Edith Prague said she wants to make some changes in workers’ compensation law, requiring employers to tell workers about paperwork they should file, and allowing commissioners to order payments for a longer period to injured people. Prague also wants a bigger penalty for insurers who won’t pay up.

    It’s unclear whether those changes would help someone like Kathy Kasey, however. The goal of commission hearings is often to tell an insurer it should pay for a treatment, without going as far as a legal order, but as the hearings drag on for weeks, workers can remain undertreated, unemployed and financially vulnerable. Yet when O’Rourke asked Mastropietro whether he needed more power to require payments, he demurred.

    “Those are policy decisions where you’re going to have to weigh what we need to do to meet our obligations to injured workers, versus what we need to do to make certain that our employers remain competitive so that they can continue to provide the jobs for these people,” Mastropietro said.

    One of the ironies of the workers’ compensation mess is that many companies make concerted efforts to hire more older workers, in part by offering health benefits. Kasey said she found the Home Depot job attractive, after 30 years of earning higher wages as a bartender, in part because it offered health insurance.

    She’d spent years in jobs where she had to hoist kegs and break up fights, so she didn’t mind moving washing machines. “Yeah, I’m older, not that I like to think about it,” she said. “I realize I probably can’t do a lot of the things I think I can.”

    Labor studies show that, while older employees are hurt less often, when they are injured they heal more slowly and take longer to return to work. At the same time, employers want their insurance companies to keep down workers’ compensation costs, in part by getting employees to return to work as soon as possible.

    Home Depot denied it pressures doctors to certify workers as healed. “The associate’s doctor is the sole determiner of whether or not an associate is medically able to perform transitional work,” the company said.

    In November, after Kasey’s doctor reported that she was, theoretically, well enough to return to light duty work, Home Depot told her they didn’t have any light duty positions open, and since she was no longer exempt from working, they terminated her.

    Her worker’s comp is running out, she’s about to lose her regular health insurance and says she can’t afford to extend it via COBRA. Her house is on the market; if it doesn’t sell by March, she could lose it, she said.

    But she expects to reach “maximal medical improvement” in June. She may be fully employable again, and the letter she got informing her she was terminated said she could always reapply for a job with Home Depot.





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    Saturday, January 20, 2007

    Azle man has special reason to savor big hit


    Norman Huddleston, front, with hunting outfitter Michael Hendrick, bagged a 22-point white-tailed deer.


    Posted on Sun, Jan. 14, 2007
    Bang for a buck
    Azle man has special reason to savor big hit
    By BOB HOOD
    Star-Telegram Staff Writer



    Bagging a trophy white-tailed deer is a happy occasion for almost any hunter, but bagging a monster buck this season had special meaning for Norman Huddleston of Azle.

    And it wasn't special just because Huddleston shot the second-largest non-typical buck on record from Texas -- "the buck of a lifetime," he said.

    "What makes it a better story is that, for me, walking is a challenge," said Huddleston, who suffers from a disease called reflex sympathetic dystrophy. "I suffer from an extreme case of RSD of the right lower leg. The ranch I hunted treated me like a king and made sure that all of my special needs were taken care of."

    Huddleston was hunting Nov. 14 on the Cypress Creek Ranch near Kerrville with H&H Hunting outfitter Michael Hendrick of Santo when he bagged a 22-point non-typical buck that had two big drop tines. Under the Boone and Crockett Club world records scoring system, Huddleston's buck scored 248 1/8 points.

    The record non-typical Texas buck scored 264 5/8 and was taken by Matthew Romero on the Deep Creek Ranch in Coryell County in 2005-06.

    Huddleston's buck had a 25 4/8 -inch inside spread and field dressed at 155 pounds.

    Huddleston shot his buck on the Kerr County ranch from a blind that had been set near a food plot in a county where the deer were just beginning the rutting season.

    "There were some does and small bucks in the food plot that had a corn feeder at the other end when the big buck came out," Hendrick said. "The buck was about 250 yards away from the other deer when he came out of the woods. The buck stepped out and then came on a dead-out run and ran all of the smaller bucks out of the field. Then the big buck caught Huddleston's scent and started to leave, but Norman got him as he was heading out. He made about a 75-yard shot.

    "Norman is an exceptional person. His outlook on life and everything else is an inspiration to everyone he is around."

    Huddleston's buck was taken to the Los Cazadores Deer Contest in Pearsall, where Larry Weishun, an official Boone and Crockett scorer, measured the antlers.

    The buck not only topped the Los Cazadores "high fence division," but it also won the Muy Grande Big Deer Contest in Freer in Duval County.

    "Lionel Garza [founder of the Muy Grande contest] told me it shattered the all-time record for a non-typical in his contest that has stood for almost 10 years," Hendrick said.

    Despite drought conditions during the spring and early summer, when antler growth was in progress, several bucks carrying trophy racks were bagged this season, including:

    The third-highest non-typical score ever (240 1/8 ), on a buck taken by Krista Andrews in La Salle County.

    The largest reported inside spread (31 3/8 inches), on a 10-point deer taken by Mark Barrett in Webb County.

    The heaviest field dressed weight of a buck (211 pounds), on a buck taken by Alan Karotkin in Dimmit County.


    What is RSD?

    Reflex sympathetic dystrophy is a chronic and progressive neurological condition that affects skin, muscles, joints and bones. It often causes severe and relentless pain for the 200,000 to 1.2 million Americans who have it.. RSD is best described as a malfunction of part of the nervous system, often after an injury. Nerves misfire, sending constant pain signals to the brain. Some other facts:

    It usually develops after surgery or in an injured limb, such as a broken leg. However, many cases involve only a minor injury, such as a sprain. In 10-20 percent of cases, no precipitating event can be identified. The condition appears after 1 percent to 2 percent of bone fractures.

    Symptoms include persistent moderate-to-severe burning pain, tissue swelling, abnormal skin color changes, elevated skin temperature, excessive sweating, extreme sensitivity to touch and limited range of movement.

    It usually affects people ages 40-60, and it's two to three times more frequent in females than males. The syndrome's incidence is increasing in young females.

    It's also known as complex regional pain syndrome, or CRPS.

    Sources: Reflex Sympathetic Dystrophy Syndrome Association of America and Healthcommunities.com
    Bob Hood, 817-390-7760 blhood@star-telegram.com





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    Broken ankle led to tragic death


    iccoventrylogo, originally uploaded by rsdscrpsnews.

    Broken ankle led to tragic death
    Saturday, 20th January, 2007
    By Hannah Murdoch


    A FAMILY has launched an appeal to raise cash for medical research after their beloved daughter died following what started out as a minor riding accident.

    Young mum Vanessa Cole thought little of it when she sustained a fracture in her ankle.

    But soon she was enduring crippling pain and had to have a leg amputated. She had contracted a rare nerve disease.

    Just three and a half years later, she suffered a blackout in the bathroom of her home and died, aged 31, before her parents Barbara and John could get through the door to reach her.

    The couple are only just coming to terms with the loss of their bright and popular daughter, but they are now determined to raise funds to fight the disease that killed her.

    Barbara, aged 62, of Outermarch Road, Radford, Coventry, explained how "horse-mad" Vanessa was riding with her daughter Bethany in 2001 when she hurt her ankle after dismounting.

    Shortly afterwards, the former Cardinal Newman pupil began suffering agonising pain and, after many tests, was diagnosed with rare Reflex Sympathetic Dystrophy (RSD).

    The disease causes severe and incurable pain in the nerve endings, and Vanessa was forced to have a leg amputated in an attempt to ease the pain.

    But it continued and the formerly active and lively estate agent began having blackouts, and it was during one of these in April 2005 that she died.

    Barbara said: "I've never seen anybody in so much pain, she once told me it was like having your leg in a hot fire all the time.

    "I'm amazed at how brave she was to cope with it, and to keep being a mum and carry on driving and being independent, but it still broke my heart to see her suffer.




    Click Here For The Original Ariticle Online.



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    Thursday, January 18, 2007

    Riverside Rehabilitation employees help woman suffering from medical


    TimesLeader, originally uploaded by rsdscrpsnews.

    Riverside Rehabilitation employees help woman suffering from medical condition

    Posted on Wed, Jan. 17, 2007

    Riverside Rehabilitation employees collected money to help a local woman, Kristin Meredick Travis.

    Travis has endured chronic pain from trigeminal neuralgia and reflex sympathetic dystrophy (RSD) resulting from an obsteoblastoma tumor in her head.

    She has had numerous treatments including brain and spinal cord surgeries without success, and the chronic pain has severely decreased her quality of life.

    She has the opportunity for a low-dose ketamine treatment in Arkansas. Riverside Rehabilitation staff representatives presented a check to Travis’ mother Nancy Meredick.

    From left are: Jane Brennan, director of marketing; Eileen Younker, BSN, CORF coordinator, nurse manager; Frank A. Pugliese Jr., CEO; Nancy Meredick, mother; Michelle Gauntlett, PAC; Jay Richards, MSPT, clinical coordinator; and Heather Stiles, LPTA, assistant clinical coordinator.





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    Monday, January 15, 2007

    Texas pain treatment works


    Texas pain treatment works
    By: Julie Novak
    01/10/2007
    By JULIE NOVAK


    WAKEFIELD -
    Elizabeth Bergan visited her pain doctor in Westerly for a check-up recently. She removed the shoe on her left foot to reveal a sparkly sock and wiggled her foot.

    "What are you doing?" the doctor asked.

    "I'm showing off," she replied.

    Just weeks ago, flexing her foot would have been an impossibility for the Wakefield resident who has Chronic Regional Pain Syndrome (CRPS), a disorder characterized by intense burning and vibrating pain in the limbs stemming from a damaged nerve.

    But Bergan traveled to Texas with her husband David the week before Christmas for a procedure invented and performed by Dr. Gabor Racz, a specialist in pain medicine, that eliminates scar tissue surrounding a nerve. She opted to have the surgery and pay out of pocket after Blue Cross Blue Shield of Rhode Island denied her coverage three times. The insurance company only covers the cost of pain medications that help control her symptoms.

    "It was wonderful to have my husband there," Bergan said. "I was petrified but I knew it had to be done - I want my life back."

    Although not fully recovered, Bergan's condition has improved some as a result of the surgery. She exercises two or three times a day as part of her therapy and uses a cane now rather than a walker. While she still experiences episodes of "vibrating pain" they are less frequent, she said.

    The surgery gave Bergan an emotional boost, too. She is returning as a volunteer for the Wakefield YMCA's Reading to Rover program, where she visits local schools with her dog Marley to teach children how to read.

    "That always lifts my spirits," she said. "When a pre-schooler recognizes a word for the first time their eyes light up. It's the coolest thing - I get the shivers. [The experience] helps me put things in perspective."

    Bergan's long-term goal is to be well enough physically to resume training for bike races in support of causes that benefit the homeless, diabetics and AIDS patients.

    She acknowledges that the road to recovery won't be traveled quickly.

    "I'm testing myself," she said. "Things are looking up, not as much as I was hoping, but they're looking up."

    The cost of Bergan's surgery is less than the family anticipated, in the ballpark of $13,000. To help with those expenses as well as transportation and medication the costs, the Bergans, with the support of family, friends and the Elks and Lions Clubs, are organizing a fundraiser. A date has not yet been set, but the Bergans plan to include a raffle at the event and are seeking gift certificates and contributions from local businesses.

    If you are interested in donating a gift certificate to be raffled off at the fundraiser, contact Bergan at 401-741-3773, P.O. Box 384, Narragansett, RI 02882 or leeguil@aol.com.




    Click Here For The Original Article Online.



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    Hitting it big in Las Vegas


    logo, originally uploaded by rsdscrpsnews.


    Hitting it big in Las Vegas
    January 4, 2007
    Noga Nir-Kistler wins a table tennis tourney, learns of No. 1 ranking.
    By Keith Groller Of The Morning Call


    Noga Nir-Kistler's trip to Las Vegas last month didn't include lots of glitz and glamor, nor did it include a spin of the roulette wheel, a roll of the dice or a pull of the slots.

    Nir-Kistler was all business in Sin City and proved to be one of the surest bets in the gambling mecca of the world.

    The wheelchair-bound 27-year-old, who has never let a debilitating disease detour her from her goals, had one of the best moments of her life at the U.S. Open Table Tennis Paralympics.

    Nir-Kistler won a gold cup and both gold and silver medals by excelling in singles and team competitions.

    And the good news followed her home to Salisbury Township where she learned from the International Paralympic Table Tennis Federation that she was ranked No. 1 in the U.S. among Class 5 (least handicapped) wheelchair table tennis players; No. 12 in the world among Class 5 wheelchair players and No. 68 in the world among all wheelchair players.

    These credentials have earned Nir-Kistler a berth in the Pan-Am Paralympic Games this summer in Brazil and opened the door to the possibility of her competing at the Paralympics Summer Games in Bejing, China, in 2008, one week after the regular Olympics are held.

    All of this good news is in stark contrast to where Nir-Kistler was emotionally and physically a year ago.

    She has been battling RSD (reflex sympathetic dystrophy), a rare, debilitating disease affecting the nervous system, since the age of 19.

    She has been confined to a wheelchair for the past three years and has undergone at least 30 surgeries over the past five years.

    Her condition, for which there is no cure, worsened in 2004 and 2005.

    ''She couldn't work, she couldn't drive her car,'' said her husband, Fred Kistler, a legend himself among local table tennis players. ''She stopped playing. Things were really going downhill. This disease is life-threatening and it looked like she may have her legs amputated.''

    What turned Nir-Kistler around was a boot — a lympho press — that pumps air into her leg and reduces swelling.

    ''It's incredible how that has improved her condition, and just perked her up,'' Fred Kistler said. ''She puts it on each leg three times each per day. The change has been like night and day. She has so much more energy and she's back to playing and playing very well. Before, she was just going through the motions.

    ''Of course, with her there's never any complaining, no matter how bad she hurts or how many procedures she must go through. She could be ready to die and she'd tell everybody she's fine.''

    Nir-Kistler, a Whitehall High graduate and a former swimmer and volleyball player, embraced table tennis as a way to stay competitive and active, even as RSD attempted to limit her life.

    She won a title at the 2003 U.S. Open National Championships at the U.S. Olympic Training Center in Colorado Springs, and won the women's open wheelchair title at the U.S. Nationals in Las Vegas the same year.

    She was set to become a member of U.S. Paralympic team that was to participate in the 2004 Games in Greece, but her health worsened and surgery kept her from playing.

    That's why her performance in Vegas meant more to here than a big hit at the blackjack tables.

    ''It was incredible,'' she said. ''I just went there with the expectation of just trying to do my best. I lost my first match when I got out there. In fact, I got blown away. So, I really had to shape up and I ended up winning a lot of matches. I ended up beating the same girl who beat me twice. I've been fortunate enough to win a lot of titles, but this one ranks right up there. And then to go from being ranked No. 31 in the world in my class to No. 12 was icing on the cake.''

    Nir-Kistler, who was born in Israel, said she missed playing a sport she come to love.

    'I just couldn't do it for about two years,'' she said. ''I couldn't even sit in the wheelchair. Thankfully, this [lympho press boot] has changed everything. I feel much better. I was very anxious to get back to table tennis.''

    For Nir-Kistler, a beloved figure within the Allentown/Lehigh Valley Table Tennis Club, which plays several times a week at the YWCA/YMCA in Allentown, table tennis is a great diversion to her health issues.

    The game is intense and fast-moving. It's not the kind of table tennis played in the family den or rec room.

    It takes amazing hand-eye coordination, reflexes, control and strategy.

    ''Unless people play the game, they don't understand the different things that are going on,'' she said. ''It's hard to explain it in words, but it's not as easy as it looks.''

    For Nir-Kistler, the sport has been a lifeline.

    ''It's fun. ? it's great to see friends and travel and go to all of these tournaments,'' she said ''When I was sick, I missed the competition and the people.''

    Through all of her setbacks, it would have been easy for Nir-Kistler to yield to RSD.

    But the same fighting spirit that has made her one of the best table tennis players in the world also keeps her moving forward; dogged and determined to beat a foe that she can't see or control.

    ''You can't give up,'' she said. ''There's always hope. I've had over 30 surgeries and life has been crazy. But I am lucky to have Fred, and lots of friends who care about me.''

    keith.groller@mcall.com





    Click Here For The Original Article Online.



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    Friday, January 12, 2007

    Graded motor imagery can relieve phantom pain


    Graded motor imagery can relieve phantom pain

    Fri Jan 12, 2007 10:10 PM GMT135


    NEW YORK (Reuters Health) - A therapeutic approach call graded motor imagery reduces the pain and disability in patients with phantom limb pain or complex regional pain syndrome type 1 (CRPS1), according to a report in the journal Neurology.

    Findings such as these should make us all a bit more open minded about pain, Dr. G. Lorimer Moseley from the University of Oxford, UK, told Reuters Health. Graded motor imagery can be considered a therapeutic tool, but should only be used "within a sound clinical reasoning model."

    Moseley notes that CRPS1 and phantom limb pain are classified as pathologic pain syndromes, because the pain seems unrelated to the underlying tissue damage. Therefore, the portion of the brain responsible for the perception of brain appears to be a reasonable target for treatment -- to "train the brain."

    The researchers investigated whether a 6-week program of graded motor imagery would reduce pain and disability for a more general population of CRPS1 patients and for patients with phantom limb pain, and compared this approach to physiotherapy and usual care.

    In the first phase of graded motor imagery, the patients assessed images of their limbs in various positions for the degree of pain they would expect to experience. In the next phase, they imagined moving the limbs in a smooth, painfree manner. Finally, they actually mimicked the movement.

    At the end of the program, average pain (as measured on a 100-mm visual analog scale) had decreased by 23.4 mm in the treatment group and by 10.5 mm in the control group, Moseley reports.

    The average scores on a specific task tailored to five patients improved by 2.2 points on a 10-point scale in the graded motor imagery group, compared with 0.6 points in the control group, the results indicate.

    By the 6-month follow-up evaluation, the average decrease in pain was still much greater for the graded motor imagery group (32.1 mm) than for the control group (11.6 mm), Moseley found.

    "It is not a panacea by any means, and some patients don't respond at all," Moseley said. He also advocates using graded motor imagery with cognitive behavioral support and reassurance.

    Moseley concludes: "Although evidence is emerging that treatments such as graded motor imagery and sensory discrimination training can be effective for pathologic pain, further studies are needed to replicate the current data and elucidate the mechanisms involved."

    SOURCE: Neurology, December 26, 2006.




    Click Here For The Original Article Online.



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    Monday, January 08, 2007

    A closer look at complex regional pain syndrome




    A closer look at complex regional pain syndrome CRPS is pain in a limb that may occur after a trauma, surgery, or a period of immobilization Monday, January 08, 2007

    Complex regional pain syndrome (CRPS) affects between 200,000 and 1.2 million Americans each year.

    There appears to be two to three times more women than men affected and any age group can be afflicted. This issue usually follows a trauma, surgery, or a period of immobilization where pain develops and never subsides in an affected limb and over time may actually grow worse.


    There are essentially two subsets: Type I, which was previously called "reflex sympathetic dystrophy" (RSD) and was preceded by an injury without direct nerve trauma and Type II, previously termed "causalgia" which implied a direct nerve injury.

    We have used numerous other terms to describe this entity such as "shoulder-hand syndrome," "Sudek's syndrome," and "Steinbroker's syndrome." In fact, causalgia was initially first documented in the 19th century by physicians treating Civil War veterans who experienced pain after their wounds healed.

    The cardinal feature of this syndrome is pain that is often described as burning and is made worse by any kind of touch, including clothing, a bed sheet or even a mild breeze. It can progress to other areas on the body.

    Other symptoms include:


    Abnormal changes in skin color: white, mottled, or red.


    Abnormal sweating or chilling.


    Edema.

    Extreme pain sensitivity.


    Stiffness.

    Tremors.


    'FIGHT OR FLIGHT'

    Most patients have experienced a minor trauma that doesn't resolve as expected. It appears that there is a disruption in the healing process. Normally, when one has an injury, a signal is sent to the brain to register pain. This triggers part of the nervous system -- the sympathetic system -- to react, which results in an inflammatory response. This is due to the "fight or flight response." The blood vessels in the skin contract so more blood can be directed to the muscles so that a victim can move away quickly from a threat.

    I
    n CRPS, the system does not turn off and the body continues to overreact. Therefore, the skin color changes and there is an excessive sympathetic response as manifested by sweating, tremors and pain.

    There is no specific blood or diagnostic test for this disorder. It is based on the patient's history and the constellation of symptoms.

    Treatment can be equally as frustrating as there is no specific remedy that helps all patients.
    Medications are often prescribed to alleviate the pain, reduce stiffness and assist in sleep.

    Traditional non-steroidal, prednisone, antidepressants such as cymbalta, and anticonvulsants such as gabapentin or carbamazepine may be helpful. Narcotics may be an alternative for some patients and antihypertensive medications such as clonidine can often assist.


    Physical therapy can help on many levels. It is important to control and maintain the movement of the affected limb and prevent weakening and contractures (loss of movement in a joint). The use of heat and cold, transcutaneous electrical stimulation, biofeedback and range of motion are crucial to an overall program approach.

    Specialized injections to block the activity of the sympathetic nerves may be helpful both diagnostically and in treatment. These can be repeated if effective.


    TRAUMATIC ISSUE

    While this is not a psychological issue it can be quite traumatizing and often patients need assistance to address the impact in their lives. The loss of being able to do many of the work and recreational activities that are crucial to our lives can be devastating and if not addressed lead to a secondary disability.


    On the average, patients seek care from five physicians before they are committed to a diagnosis and a treatment plan.


    Patient education becomes a crucial keystone to living successfully with this problem. The Internet has provided a valuable resource for clinicians and patients in assuring patients they are not alone, that treatment -- although complicated -- can lessen symptoms, and that life can go forward.

    In certain instances the process has been noted to diminish and resolve over time. The National Institutes of Health Web site (www.nih.gov) can be helpful with the latest updates in clinical trials and treatment advances.


    This column is provided by the Richmond County Medical Society.

    Questions may be sent to the column in care of the Advance.




    Click Here For The Original Article Online.



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    Growing pains?


    Growing pains?
    Childhood aches may be symptom of more serious illness
    By ED CULLEN
    Advocate staff writer
    Published: Jan 8, 2007


    A child’s “growing pains,” mysterious aches and pains that doctors don’t fully understand, occur in fewer than half of American children.
    Often, any pain that a parent can’t immediately associate with an obvious cause is passed off as a “growing pain.”

    Coming on in childhood or adolescence, so-called growing pains can be the symptoms of serious illness, one of more than 100 rheumatic disorders or some other serious disease, said Stephen Lindsey, an Ochsner Health System physician who specializes in rheumatism.

    Arthritis is among the approximately 100 rheumatic diseases that cause swelling and pain in the joints.

    While most “growing pains” may be just that and will eventually go away, Lindsey sees an average of 12 children a month who are suffering serious illnesses that won’t just go away.

    “Growing pains” may come on late in the day, especially if a child has been particularly active. The pains may be severe enough to awaken a sleeping child.

    The pain isn’t specific to joints, occurs mainly in the legs and may come and go for months.

    The only way to rule out something serious, Lindsey said, is a physician’s exam, lab work and X-rays.

    One recent afternoon, three of Lindsey’s young patients and their parents gathered to talk about “growing pains” that turned out to be serious illnesses requiring immediate attention.

    Sarah Rodriguez, now a 14-year-old student at Galvez Middle School, was practicing her softball pitching when she slipped on rain-slick grass.

    “I was in my windup,” she said. “Slipped and fell. I couldn’t get up.”

    Rodriguez had dislocated her hip but didn’t know it.

    The next day, her foot cold and almost black, Rodriguez went to her pediatrician. The teenager, who’s double jointed, thinks her hip popped back in of its own accord.

    Almost six weeks went by without the foot regaining normal color and sensation. Her lower leg swollen, Rodriguez spent four days at Our Lady of the Lake Regional Medical Center where she got a diagnosis of Reflex Sympathetic Dystrophy Syndrome or RSDS.

    “It’s not common, but we see it,” Lindsey said.

    It’s likely that the fall Rodriguez took on the wet grass was the start of her RSDS, Lindsey said.

    A series of six nerve blocks and six weeks of high dose steroids have left Rodriguez with some pain but the ability to get around again. Physical therapy helped mobilize the young woman’s hip and leg.

    Nerve blocks are shots of long-acting anesthetics that block nerve overstimulation. Steroids decrease inflammation.

    “I’m not giving up on my dream,” said the teenager who describes her pitching as having “speed potential” with good control and ball movement. “I want to pitch in college.”

    “The longer you delay treatment, the better chance of atrophy (muscle loss) or chronic pain,” Lindsey said.

    Two years ago, Laurie Petty of Gonzales noticed that Ashlynn, her 3-year-old daughter, seemed to have trouble walking upon awaking in the morning.

    “She’d scoot out of her room on her hands and bottom,” the young mother said. “I thought she was doing it to get attention.”

    By the time Ashlynn’s dad, Toby, got home, there was nothing Laurie could show her husband about their daughter’s odd morning behavior.

    “By the time I got home,” said Toby Petty, “she was running around playing.”

    The weekly shot Laurie Petty now gives Ashlynn to control the child’s rheumatoid arthritis in knees, ankles and right elbow makes the little girl “a very healthy 5-year-old,” Petty said.

    Ashlynn put an exclamation point on her mother’s statement with an athletic leap from the examination table.

    “Juvenile rheumatoid arthritis involving five or more joints used to frequently lead to crippling by the time the child was 10,” Lindsey said.

    Lindsey diagnosed Anna Claire Gossen, 6, of Rayne with juvenile monoarticular rheumatoid arthritis. Anna Claire has arthritis in her left elbow.

    “When I first saw her, she had a 45-degree bend in her elbow,” Lindsey said. “Now, it’s only 18 degrees from full extension. I think we’ll get her a little better and she should go into remission at puberty. We may only get her back to 15 degrees, but she’ll be able to do what most teenagers can do.”

    Anna Claire’s dad, Jason, made the discovery that something was wrong.

    “We were at the beach,” the little girl said. “My daddy was putting sunscreen on me and noticed my arm was bent.”

    “One elbow, the left, was swollen,” Jason Gossen said.

    Children often adapt to balky joints, Lindsey said.

    “It took a while to diagnose,” said Anna Claire’s mother, Amy. “We were sent to an orthopedist who thought it might be a fracture, that maybe she’d fallen and kept going and it healed itself.”

    But that wasn’t the case.

    “I want parents to mention these pains to their family doctors when their children are getting their physicals,” Lindsey said. “I don’t want parents saying, ‘Oh, it’s growing pains,’ and missing something serious. If the parents aren’t satisfied with what the doctor says, they should get another opinion.”




    Click Here For The Original Article Online.



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    Friday, January 05, 2007

    Music 'can reduce chronic pain'



    Music 'can reduce chronic pain'


    Research has confirmed listening to music can have a significant positive impact on perception of chronic pain.

    US researchers tested the effect of music on 60 patients who had endured years of chronic pain.

    Those who listened to music reported a cut in pain levels of up to 21%, and in associated depression of up to 25%, compared to those who did not listen.

    The Journal of Advanced Nursing study also found music helped people feel less disabled by their condition.

    The patients who took part in the study were recruited from pain and chiropractic clinics.

    They had been suffering from conditions such osteoarthritis, disc problems and rheumatoid arthritis for an average of six-and-a-half years.

    Most said the pain affected more than one part of their body, and was continuous.

    Some listened to music on a headset for an hour every day for a week, while the rest did not.

    Among those who listened to music, half were able to chose their favourite selections, the rest had to pick from a list of five relaxing tapes provided by the researchers.

    Consistent improvements

    Researcher Dr Sandra Siedlecki, of the Cleveland Clinic Foundation, said: "Our results show that listening to music had a statistically significant effect on the two experimental groups, reducing pain, depression and disability and increasing feelings of power.

    "There were some small differences between the two music groups, but they both showed consistent improvements in each category when compared to the control group.

    "Non-malignant pain remains a major health problem and sufferers continue to report high levels of unrelieved pain despite using medication.

    "So anything that can provide relief is to be welcomed."

    Professor Marion Good, who also worked on the study, said: "Listening to music has already been shown to promote a number of positive benefits and this research adds to the growing body of evidence that it has an important role to play in modern healthcare."

    Previous research published in the same journal found listening to 45 minutes of soft music before going to bed can improve sleep by more than a third.

    Complex phenomenon

    Dr Cathy Stannard, honorary secretary of the British Pain Society, said other studies had shown music could have a positive impact on the perception of pain.

    But she said the effects tended to be relatively small, and there was doubt as to whether they were anything other than very short term.

    "The perception of pain is very complicated, and is influenced by factors such as emotion, experience and mood," she said.

    "If music makes you feel relaxed and chilled out then one might expect it would affect our perception of pain."

    Dr Stannard said it was possible that music simply provided a distraction which stopped people concentrating on their pain.

    She said it was not surprising that drugs which had a specific action on the body often had a limited effect on a phenomenon as complex as pain.

    "We need to start to think outside the box," she said.




    Click Here For The Original Article Online.



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    Monday, January 01, 2007

    Wheelchair athletes’ hardship disappears during time on the hardwood


    Wheelchair athletes’ hardship disappears during time on the hardwood
    BY CHAD JENNINGS
    STAFF WRITER
    12/25/2006

    A shot glanced off the rim, bounced momentarily toward the ceiling, then fell gently toward the floor. From rim to hands, the rebound hung in the air for only a moment, two seconds at the most.


    As the basketball fell, the gym echoed. The squeak of rubber against hardwood mixed with the grind of metal against metal, and in the scramble for position, a wheelchair flipped backward. A man who couldn’t stand on his own was left lying flat on his back, his legs still strapped to the chair.

    Next moment, a fast break was heading the other way. A referee walked next to the fallen player, but barely glanced his direction and never offered so much as a hand. Only after a foul was called did the action stop and two players wheeled down court to help their teammate back onto his wheels.

    Upright, the player never left the game, and players asking whether he was all right seemed to be doing so simply out of courtesy.

    The game had to go on, just like everything else.

    It had to go on for Tom Cox, who worked himself into a wheelchair when he was trying to work himself through college.

    It had to go on for Jason Otto, who made the biggest mistake of his life, crashed his car and broke his back.

    It had to go on for Kevin Reynolds, who was a teenager working on a dairy farm when he was trapped beneath a fallen tree and confined to a seat with tires.

    “Some people can never deal with the accident,” Reynolds said. “And some people take it and move right on with it.”

    Wheelchair basketball has been part escape and part continuation, part competition and part camaraderie.

    The Scranton Allied Forces have been common ground for six teammates from different cities and with varying degrees of disability.

    It’s been common ground on which to gain a little extra traction. Common ground on which to keep moving forward.

    Common ground on which it’s OK to fall, as long as you get back up.

    Escape

    Eighteen years old, working 16-hour shifts to make enough money so that he wouldn’t have to work through college.

    Cox’s body was too weak to fight the spinal meningitis.

    Twenty-one years old, driving drunk when his car flipped and tossed him to the roadside.

    Otto was lucky to be alive.

    Seventeen years old, cutting firewood along a creek to make a little extra money.

    Reynolds was pinned beneath a rolling pine tree.

    “It took a few months to sink in that this is the way life’s going to be from now on,” Reynolds said.

    To hear the team tell it, it’s the sinking in part that’s key. There has to be some level of acceptance. Not acceptance of limitations, only acceptance of reality.

    No more denial. No more self-pity. No more asking the world to stop so that someone can flip you upright.

    “There are a lot of people in our area in wheelchairs who just sit at home because, to them, their life is over,” Cox said.

    He would know. Cox is 37, he’s been paralyzed for 19 years and he works at Allied Services, the Scranton rehabilitation center that sponsors the Allied Forces. He’s seen some patients give up, and he’s seen some others fight back.

    Teammate Sherri Ayers did both.

    Through tennis leagues, bowling leagues and even a professional softball league in New Jersey, 46-year-old

    Ayers spent two decades as an ultra-competitive, able-bodied athlete.

    In 1998, though, reflex sympathetic dystrophy largely cost her the use of her right leg.

    “You figure it’s the end of your life,” Ayers said. “I was in total depression before I started this.”

    That was before. This is now.

    Continuation

    The drive from her home in Effort takes Ayers an hour. She makes the trip every Wednesday, six months a year, for practice at Johnson College.

    “If they did it year round and just had practice, I’d still come every week,” she said.

    Reynolds and Qassem Al-Nadi drive to practice from Binghamton, Lonnie Thorpe comes into town from Waymart and Otto arrives from Fleetville. Cox has by far the shortest drive. He lives in Dickson City.

    Games are on Saturdays. Most Mid Atlantic Conference games are within a two-hour drive. Tournaments range from Connecticut to Virginia.

    Vans are quickly filled with players, coaches, day-to-day chairs and specially designed basketball chairs.

    “A good road trip,” Thorpe called it.

    Back at Western Wayne, 41-year-old Thorpe was a wrestler and football player. Otto, 35, played football and baseball at Lackawanna Trail. Cox was a basketball player at Scranton Central.

    Reynolds is the only one of the group who didn’t play sports in high school. Now 47, he started playing wheelchair basketball after a friend asked him to give it a shot in the early ’80s, a few years after his 1977 accident.

    For Al-Nadi, wheelchair basketball isn’t a return to the familiar or a taste of something new.

    It’s the only life he’s ever known.

    Born in Jordan in 1965, 41-year-old Al-Nadi was born disabled. He can shuffle along on crutches, basically carrying himself with his upper body, but his legs won’t support his weight on their own.

    As a kid, he learned to play handball, and as an adult, he finished a marathon with his hands bleeding at the finish. He’s played wheelchair basketball for San Diego City College and for the Jordanian national team.

    “Basically I felt that (disability) was the hand I got dealt and that the life I wanted to live was to be involved in sports,” Al-Nadi said. “That’s the reason I drive all the way to Scranton. My motivation is it’s something I want to do, something inside of me.”

    Competition

    Twenty years ago, Thorpe was in a car that crashed into a telephone pole. The impact, and the fact he was wearing a seat belt that only went across his lap, broke a vertebra in Thorpe’s back.

    That’s the reason he felt no pain last year and initially had no idea anything was wrong, when during a game another chair jumped onto his own, hit his shin and broke his tibia and fibula.

    “I’ve done football, wrestling and wheelchair basketball,” Thorpe said. “And it’s all the same.”

    It’s fast paced, intense and sometimes brutal. Thumbs are busted, chairs are flipped and players who can’t walk are sent tumbling to the ground.

    “You never get used to that really, because you never know,” said Allied Forces coach Jim Batton, who is not disabled. “Like in a football game, when someone goes down, you don’t know how severe it is.

    “I’m still scared for them. Especially with six players, we can’t afford to lose one of them.”

    This is still a team that, first and foremost, wants to win. They aren’t in the sport to play it safe.

    Two younger players, 15-year-old Daniel Rivers of Waymart and 19-year-old Casey Erickson of Clarks Summit occasionally practice and play in home games with the Allied Forces, but they don’t travel with the team.

    “I know everyone has good intentions and they’re looking out for me,” Rivers said. “But it’s nice to do something without people saying, ‘Slow down, oh my gosh, I can’t believe he’s doing that.’ ”

    Camaraderie

    After intricate passing drills and full-court layup drills, practice came to a halt and Al-Nadi chased down a loose ball along the sideline.

    “Want to see wheelchair bowling?” he asked, turning back toward the court and rolling the ball toward his teammates.

    When the ball smacked squarely into Reynolds’ right wheel, Al-Nadi burst out laughing.

    “I think it helps to be around people who understand what you’re going through,” he said later. “You develop friendships and long-term relationships with these people. You do need that support. We might not like to see it that way, but there is something to it.”

    It’s not all there is to it, but it’s part of it.

    “Who else could relate to it other than guys going through the same thing?” Otto said.

    When they travel — and they travel often — the Allied Forces eat dinner together, play cards together and check into hotels together. They help one another remove hotel bathroom doors when the doorways aren’t wide enough for the chairs.

    It’s those chairs that make the team unique, but it’s hardly the chairs that define the players. Look past the metal and the wheels, and their game is more familiar than unusual.

    “If anything, rather than being treated with more help, we just want to be treated as equal,” Cox said.

    Everyone falls down at some point. The trick is to deal with the fall, and find a way to get back up.

    Contact the writer: cjennings@timesshamrock.com




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