Saturday, March 31, 2007

Memantine Treatment of Complex Regional Pain Syndrome

Memantine Treatment of Complex Regional Pain Syndrome: A Preliminary Report of Six Cases.

Original Articles

Clinical Journal of Pain. 23(3):237-243, March/April 2007.
Sinis, Nektarios MD *; Birbaumer, Niels PhD + ++; Gustin, Sylvia PhD +; Schwarz, Anja PhD +; Bredanger, Sabine MD [S]; Becker, Stephan Thomas MD [//]; Unertl, Klaus MD [S]; Schaller, Hans-Eberhard MD *; Haerle, Max MD *

Objectives: Recent studies have confirmed the contribution of the central nervous system (CNS) to the pathogenesis of Complex Regional Pain Syndrome (CRPS), because animal models of neuropathic pain syndromes demonstrate an overexpression of N-methyl-D-aspartate-receptors in the CNS. The aim of this work was to study the influence of a central acting drug-the N-methyl-D-aspartate receptor antagonist Memantine-in patients with CRPS of one upper extremity. Here we present the results of 6 patients treated with Memantine for 8 weeks.

Methods: All patients developed CRPS after traumatic injury to one upper extremity. To document changes during the study, levels of pain were measured after clenching the hand using a numeric pain intensity scale ranging from 0 (no pain) to 10 (maximum pain). Motor symptoms were documented for the fingers (fingertips to palm and fingernails to table) and the wrist (flexion/extension). Furthermore, the force was analyzed using a JAMAR-Dynamometer and a Pinchmeter. For assessment of central changes, functional magnetic resonance imaging and magnetoencephalography were used to further document the results of other experiments in 1 patient. Autonomic changes were photographed and pictures were compared before and after treatment with Memantine.

Results: Six months after treatment with Memantine, all patients showed a significant decrease in their levels of pain which coincided with an improvement in motor symptoms and autonomic changes. The functional magnetic resonance imaging and magnetoencephalography results provided evidence of cortical reorganization [changes in somatotopic maps in the primary somatosensory cortex (S1)]. These changes returned to a cortical pattern comparable to the unaffected side after treatment with Memantine.

Discussion: Based on these first results, the use of Memantine for treatment of CRPS seems promising and supports the hypothesis of a CNS contribution to the pathogenesis and maintenance of neuropathic pain syndromes.

(C) 2007 Lippincott Williams & Wilkins, Inc.

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Thursday, March 29, 2007

Managing Chronic Pain

Thursday March 29, 2007

Managing Chronic Pain

By Rachel Stern
Signal Staff Writer

Sharp, burning, stinging, throbbing. Whatever you call it, it's pain. We've all had it, and it all calls out for relief. Whether it's migraine headache, arthritis, or low-back pain, there is generally an over-the-counter analgesic to take care of it, and, failing that, a prescription. But what happens when your pain simply won't go away?

Nicolas Weider, D.O. (Doctor of Osteopathy), board-certified anesthesiologist and Physician-in-Charge at the Kaiser Permanente Panorama City Pain Management Clinic, explains that this is known as chronic pain, which comprises several different disorders.

"Chronic pain in general is pain that lasts more than three months," said Weider. "there are many different types of pain disorders: for instance those due to congenital factors or to trauma. There are also specific pain disorders, like complex regional pain syndrome, when there is an activation of multiple parts of the nervous system."

The ABC's of Chronic Pain

More than 50 million Americans experience chronic pain, according to the American Pain Foundation, with back pain, headache and joint pain caused by arthritis being the most common conditions. Chronic pain costs the United States billions of dollars annually. According to Shahin Sadik, M.D., Board Certified in Anesthesiology, Pain Management and Pain Medicine, the U.S. is behind other major Western countries such as Canada, Great Britain, and the European Union in terms of palliative (pain-relieving) care. For a long time, pain per se received little attention or government funding, the situation is changing. Sadik, who has practices in Valencia and Palmdale, said part of the problem is the anti-drug message the government so assiduously dispenses.

"There is a stigma about opiate use," said Sadik. "But prescribed and controlled, they are wonderful drugs. People are happier when their pain is down."

Part of the stigma is among doctors themselves they are worried, said Sadik, that if their patients get addicted and want to stay on the medications longer than is necessary, they themselves will have trouble from the Drug Enforcement Agency, which oversees the dispensing of all controlled substances. But in his 14-year experience as a pain doctor, only approximately one to two percent of his patients have used their medications inappropriately.

"And these patients should be treated differently from street-drug addicts," said Sadik. "Though they shouldn't get narcotics anymore, we help them get into detoxification programs."


Congress designated the years 2001-2010 as the "Decade of Pain Control and Research." Among the goals of this initiative are the requirement that U.S. hospitals and nursing homes meet new standards of pain management, and that health-care professionals be more informed about the nature of chronic pain.

Physicians have learned that pain is much more complicated than had been previously thought, said Weider, involving many different mechanisms depending on the source of the underlying problem. In some cases, pain receptors begin to act on their own, with concomitant physical changes in the behavior of the nerves, making chronic pain very difficult to treat.

Sadik decided on pain management as a sub-specialty because he himself was a chronic pain patient, due to an automobile injury.

A Stuck Switch

Simple pain involves the transfer of basic information from the site of the injury to the brain. For instance when you get a sunburn, the initial injury is at the level of the skin, whose nerves send a signal to the spinal cord and from there to the brain. With chronic pain, however, there is an over-sensitization of the nerves so that they feel pain all the time. "In fact, the nerves create their own circuit that persists, even when there is no longer an 'original' injury," said Weider. "This is caused by chemicals shuttled on the spinal cord, which effectively reset the suffering person's pain 'thermostat.' The goal of treatment for chronic pain is to try to set that thermostat back.'"

This is how antidepressants and anti-seizure medications can alleviate chronic pain, said Sadik. They work directly on the nerves to stop them from "firing," which is what causes the pain.

Treatment of chronic pain differs from most other medical techniques in that practitioners might essentially "throw the book" at the pain, whereas in general medical approaches are more fine-tuned mechanisms. Because the theory is that pain-inducing chemical signals are "wound up," and the practitioner wants to break that cycle, he or she will often use whatever works, whether that involves neurochemical stimulation, medication, removal of disks for back pain, or exercise, for instance if the issue is that the patient lacks core strength.

"Or we might use all of them," said Weider. "The traditional thinking in medicine is to try things systematically, whereas for chronic pain we might try remedies in parallel to see what works."

What has changed in the past decade or so, is that pain is now being taken seriously as a chronic disease, said Weider, like diabetes, or any other chronic condition. The key insight is to see all pain as urgent, whether it is acute or chronic.

The Emotional Connection

It has long been understood by traditional cultures and by the psychotherapeutic community that emotions have a relation to pain. This is not the same thing as saying to sufferers of chronic pain that "it's all in their head" - on the contrary, neurology is helping to explain the specific pathways whereby emotions exacerbate or mitigate pain.

"Your mind does not create the pain," said Weider, "but it can create a tendency to focus on it."

For instance, many pain patients find that their pain increases at night. Weider said that this is sometimes due to the fact that there are fewer distractions at night, and actually presents a therapeutic opportunity to use techniques like guided imagery to take their mind off their pain. This is especially helpful since using imagery is a skill that patients can develop on their own, and since part of the experience of pain is feeling out of control, the sense of control itself can alleviate some of the pain. In addition, there is abundant evidence, said Sadik, that chronic pain can cause other symptoms, like depression.

"Pain is both emotional and sensory," he said. "Depressed people often have a lower pain threshold, which sets them up for more pain. It's a vicious cycle and when we address the emotional component of dealing with chronic pain, the patient's demeanor improves; they don't feel so hopeless, whereas before they couldn't see a future out of tunnel of pain. That's part of our job too."

Pain researchers are confident that future studies will further illuminate the relationship between emotions and chronic pain.

An Eclectic Approach

Because chronic pain has many causes, practitioners avail themselves of many remedies. These can be medications, like anti-inflammatories, anti-seizure medications, muscle relaxants and opiates like codeine, methadone and morphine. Other, non-pharmaceutical modalities like heat, chiropractic and massage are also used.

"We figure out what works, and whatever it is, we use that," said Weider. Non-medicinal modalities are especially helpful for elderly patients, since they can be particularly bothered by the side-effects of muscle relaxants and pain medications, which can promote loss of balance and falls. This sets up a situation where the elderly become afraid to move, and their resulting inactivity, or even fear of movement itself, can make their pain worse. Though the kinds of conditions Weider and Sadik may see, e.g.: low back pain, muscle pain and arthritis, are common, the difference is in how they approach the problem and the patient.

"We see (patients) after they have been evaluated by a primary doctor or even by a specialist, when the outcome has not been satisfactory," said Weider. "And they ask us to help them. It can be the most frustrating thing to handle, to have a pain that won't go away but which doesn't have a specific cause."

Whether there is an objectively obvious cause, or whether the pain is subjectively perceived doesn't matter, said Weider. The issue is that the patient has an unpleasant sensation regardless of whether there is an indirect or direct trauma. The proof is in the perception.

"In the past, we would say to a patient, in effect, 'I don't understand why you're still in pain,' or worse, 'You really shouldn't still be in pain now,'" said Weider. "Now we ask 'What can we do to stop the pain?'"

What changed, he said, is the education doctors have received in pain management.

"Pain medicine has grown quite a bit," said Sadik. In the future, he hopes, doctors will be able not only to understand their patients' chronic pain, but to reliably alleviate it as well.

Annemarie Donkin contributed to the story.

Click Here For The Original Article Online.


Tuesday, March 27, 2007

Amy Goodall named Youth Role Model, honored as Real Hero

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Amy Goodall named Youth Role Model, honored as Real Hero

Last Update: Mar 26, 2007 7:46 PM

Posted By: brynn galindo

Posted 3/26/07
BAKERSFIELD - Pop stars seem to be topping the list of American teen idols these days. But there's one teen who's taken the top spot in Kern County for drawing attention to a disease that's so rare, most doctors wrongly diagnose it and order drastic surgeries that were never needed.

Continuing KGET TV-17's Real Hero profile, 17's Cat Andersen introduces us to this year's youth role model.

Crowds of people, dozens of rock bands, and activities galore filled Veteran's Hall over the weekend for "Rock out to knock out RSD," a concert that sprang from one 16-year-old's mission to spread the word about Reflex Sympathetic Dystrophy.

"It's miserable," said Todd True. "My foot swells up all the time. It freezes, and then it burns. Then it contracts uncontrollably. It's misery."

"Basically it's a malfunction of the nervous system," said Ashley Goodall, who was honored as this year's Youth Role Model at the Real Hero Luncheon. "It misfires and tells the brain that part is being amputated or infected."

For Goodall, that part of her arm and the symptoms that followed caused her doctor to misfire a diagnosis and order emergency surgery.

"I was in the hospital and they were getting ready to amputate my arm because they thought it was infected," said Goodall.

Her arm was spared, but only because one doctor happened to come across a pamphlet on RSD. He called off the amputation at the literal last minute.

Goodall said she got lucky. But hundreds of others with RSD have not been as fortunate, and that's why she's made it her full-time job to get the same information that saved her arm into other people's hands.

"It was a godsend," said Ture. "I reached out to Ashley and I'm finding out these other places that she reached out to that I can now reach out to and it's opening up doors for me and other people like me. It's tremendous."

Goodall also started a non-profit organization right out of her home. It's called Rock Out to Knock Out RSD Inc. She did it to make sure she knew where all the money she raised was going.

Like walkers, wheelchairs, medicine for people that can't afford it, and awareness of course," she said.

Goodall hopes she and others with RSD will one day be able to lead normal lives.

In the meantime, she's paving the way for an extraordinary change.

Goodall will be among those recognized at the American Red Cross Kern chapter Real Heroes recognition luncheon on March 30.

Sponsorship tables and tickets for the event are still available. Tables are $500 and tickets are $35. Tickets may be purchased at the American Red Cross at 239 18th Street from 9 a.m. to 4 p.m.

Click Here For The Original Article Online.


Sunday, March 25, 2007

Evidence for spirochetal origin of Sudeck's & trophy

Editor's Note: The following isn't in English, so I can't read it... but it's interesting that it notes a "spirochetal" origin for RSD. I've not hear that term before and wanted to post this to see if any of you had, what it means (if anything) and maybe pass along more information.

Thanks kindly,


Titre du document / Document title

Evidence for spirochetal origin of Sudeck's & trophy (algodystrophy, reflex sympathetic distrophy)

Auteur(s) / Author(s)


Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)

(1) Univ. Vienna, dep. dermatology II, Vienna, AUTRICHE

Résumé / Abstract

Four female patients with Sudeck's atrophy (SA) were evaluated at our department. Sera of all patients were investigated for antibodies against Borrelia burgdorferi. In all patients elevated IgG antibody titers and in one patient also elevated IgM titer were found. In one patient structures identical with B. burgdorferi could be detected on histological sections from the skin of the affected limb

Revue / Journal Title

Archives of orthopaedic and traumatic surgery (Arch. orthop. trauma. surg.) ISSN 0344-8444 CODEN AOTSDE

Source / Source

1989, vol. 108, no5, pp. 314-316 (19 ref.)

Langue / Language


Editeur / Publisher

Springer international, Berlin, ALLEMAGNE (1978- 1988) (Revue)

Mots-clés anglais / English Keywords

Posttraumatic Südeck atrophy ; Etiology ; Borrelia burgdorferi ; Borrelia infection ; Diseases of the autonomic nervous system ; Nervous system diseases ; Diseases of the osteoarticular system ; Spirochaetaceae ; Spirochaetales ; Bacteria ; Spirachaetosis ; Bacteriosis ; Infection ; Human ;

Mots-clés français / French Keywords

Ostéoporose posttraumatique Südeck ; Etiologie ; Borrelia burgdorferi ; Borréliose ; Système nerveux autonome pathologie ; Système nerveux pathologie ; Système ostéoarticulaire pathologie ; Spirochaetaceae ; Spirochaetales ; Bactérie ; Spirochétose ; Bactériose ; Infection ; Homme ;

002b17a08 ;

Mots-clés espagnols / Spanish Keywords

Osteoporosis postraumatica Sudeck ; Etiología ; Borrelia burgdorferi ; Borreliosis ; Sistema nervioso autónomo patología ; Sistema nervioso patología ; Sistema osteoarticular patología ; Spirochaetaceae ; Spirochaetales ; Bacteria ; Espiroquetosis ; Bacteriosis ; Infección ; Hombre ;

Localisation / Location


Copyright 2006 INIST-CNRS. All rights reserved
Toute reproduction ou diffusion même partielle, par quelque procédé ou sur tout support que ce soit, ne pourra être faite sans l'accord préalable écrit de l'INIST-CNRS.
No part of these records may be reproduced of distributed, in any form or by any means, without the prior written permission of INIST-CNRS.
Nº notice refdoc (ud4) : 6586121

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Friday, March 23, 2007

Monday, March 19, 2007

Lindsay's Hope

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clock Mar 12, 2007 6:00 pm US/Eastern

Lindsay's Hope

Pat Ciarrocchi

(CBS 3) BOYERTOWN A once vibrant 22-year-old now spends her days and nights in constant pain, unable to eat and unable to walk.

However, through it all she still has a sparkle in her eye with hope possibly on the horizon.

"Pretty much everyday it's just constant pain," said Lindsay Spengler.

Lindsay was once a star athlete at her high school but Lindsay has been bedridden since 2002 after being diagnosed with two diseases; Reflex Sympathetic Dystrophy or RSD and Porphyria, combined they make her feel like her skin is burning.

"There are times when I look down just thinking it's literally on fire," said Lindsay.

RSD can remain dormant for years and is found after an injury and Lindsay's case was discovered after she broke her thumb.

With RSD, the signal of pain from the nerves to the brain never stops and mixed with the disease Porphyria, which affects oxygen flow to organs, and the pain becomes a burning sensation.

"When she's moving or someone touches her or there is a breeze, a drop of water, it sends her over the edge, it's horrifically burning," said Lindsay's mother Sharon, adding, "She actually dreams about being on fire."

Lindsay hasn't been able to eat or walk for four years and she prays for the day she can do normal activities again.

Her prayers may be answered with word of an experimental treatment in Germany.

"We were pretty much at the end of our rope and I thought what if I have to live like this? That's not an option," said Lindsay.

Her family has to raise almost $200,000 for the procedure which will put her in a coma for up to seven days.

"A lot of patients return doing what they used to do so that would be awesome," said Sharon.

"Wouldn't it be great if I woke up and it was gone," added Lindsay.

If you are interested in assisting Lindsay, you can visit New Hope For Lindsay for more information.

Click Here For The Original Article Online.


Living with pain: Woman copes with RSD

Bonnie Scherer of Prior Lake has lived with RSD for nine years. (Photo by Shawn Hogendorf)

Living with pain: Woman copes with RSD

Filed under:

By Shawn Hogendorf


PRIOR LAKE -- Bonnie Scherer of Prior Lake is no stranger to pain. She experiences pain equal to or exceeding that of childbirth on a daily basis.

The pain is so bad in her legs that she can’t wear pants. Even in subzero temperatures, people will see Bonnie in shorts.

She can’t work. She can’t sleep an eight-hour night. She can’t be up for more than two hours at a time. Every 15 minutes, she needs to sit down for two minutes to keep from going into a flare.

When times are bad, she sleeps above the covers.

“Anytime anything touches me, the bed sheets, pants, the dog’s tail, it is excruciating,” Bonnie said. “I can’t live life on any type of schedule. It’s hard to plan anything because you don’t know how you will feel.”

She doesn’t give into her pain. Bonnie perseveres through life and helps others live with reflex sympathetic dystrophy (RSD) through the nonprofit organization she and her husband Steve started: The Minnesota RSDS/CRPS Coalition.

RSD, also known as complex regional pain syndrome, is a chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.

RSD comes on after a minor injury or trauma that the body faces, which develops into a chronic pain syndrome lasting long after the original injury, said Dr. L. Michael Espeland, an interventional pain management specialist at HealthEast Midway Pain Center in St. Paul.

Bonnie is not alone in her pain. Millions of people have RSD, and it is more commonly diagnosed as medical professionals learn more about the disease that began during the Civil War.

Bonnie developed RSD nine years ago, after she slipped on ice and sprained her ankle. Before being diagnosed with RSD, she saw a total of 17 doctors and had two surgeries on her ankle. She was told her pain was psychological. It was a sore ankle, and she had to learn to live with it.

She was told by three different neurologists that there was nothing that caused her symptoms.

After two years of differing medical opinions about the source of her pain, she was finally diagnosed with RSD.

RSD is difficult to diagnose because it’s very seldom that a patient shows all of the symptoms, Espeland said. It is a clinical diagnosis. There are no tests that give a definitive yes or no.

There is a need for a medical evaluation to diagnose RSD, said Nurse Practitioner Angie Bruker of Fairview Pain and Palliative Center. It’s a complex syndrome with a large group of symptoms. Medical professionals must look at the big picture and listen carefully to the patient. They can’t just review the history.

“It is something we don’t know a lot about. When there is a lack of understanding, there are problems treating it,” Bruker said.

“There are many different medical opinions,” Bonnie said. “Every doctor sees this disease differently. That is very validating, because as patients we see the difference in opinions a lot in the medical community. I have learned you can agree to disagree with your physician, but you still need to respect them.”

The therapies need to be combined with a cognitive-behavioral approach and physical therapy, Bruker said. It’s important to look at the overall functioning of the patient to enhance self-management, help them return to their roles in society and, when possible, decrease the pain.

“There is no cure for pain, so it is not always possible to decrease it,” she said.

The RSD pain scale is based on the patient’s level of pain, ranging from zero to 10, said LaVonne Dunn, a Brooklyn Center woman who has had RSD for 10 years.

“I have never talked to a person with RSD who has a pain level under five or six on a good day,” she said. “That’s where most of us want our pain to be.”

Bonnie lives her daily life at a seven or eight, she said. When first diagnosed, her pain level was a three or four.

A pain level of six or seven is incredible pain, Espeland said.

The pain is manageable in some cases through a number of pain medications, a spinal-cord stimulator that acts like a pacemaker for the nervous system, and electrical stimulation that passes through spinal fluid into the spine to block pain, replacing it with a more pleasant, warm, tingling feeling, Espeland said.

“RSD is very individualized. There are no absolutes with RSD,” said Dunn, a member of the coalition’s board. “People may experience similar symptoms or pain, but each individual responds to RSD differently.”

Bonnie has exhausted all of the options in an attempt to make her pain tolerable. She is on too many pain medications to count, has had sympathetic nerve system blocks, and is about to have a pain pump implanted with a medication derived from toxic properties of snails, in an attempt to touch the pain that morphine cannot.

In addition to medicine and treatment, Bonnie uses relaxation techniques such as guided imagery to calm her flares down.

“The longest time I have had without pain after a block was three hours,” Bonnie said. “I was in heaven. I had no pain. I didn’t know what that was like. This pain is my every day.”

The RSD coalition emblem is a candle called the light of hope, Bonnie said. “I’ve accepted that this will probably never go away, but a part of me has to believe there is a cure, especially when I see kids with it,” she said.

The pain Bonnie feels is not only physical, it is emotional.

Bonnie has been through severe depression, she said. “Its part of the process to get to the point of acceptance, but you can’t give up. Giving in doesn’t mean giving up.”

“It’s hard on the grandkids because they can’t just jump on grandma’s lap,” Steve said. “At first they don’t understand that. If they can’t physically see something wrong like a cast or a wheelchair, they don’t understand the pain.”

“The hardest part isn’t the pain,” Bonnie said. “It’s looking at Steve and my kids and my grandkids because they hurt, and I can see the pain in their eyes when they look at me and I can’t do something because the pain is severe or I fall down.”

Bonnie has become an advocate for people in pain. The coalition is a place for people with RSD to come together in the form of a support group.

“When the group started, everyone thought they were alone,” Steve said. “It makes group members so happy to meet other people who share the same experiences they do. The support has become so deep and the network is always there. It isn’t just two hours a week that they get to talk about their problems. All people have to do is pick up the phone or get on the Internet. They used to be alone, but now they have fiends who know how they feel.”

The coalition has become her family, Dunn said. “Following in Bonnie’s footsteps is something I can’t learn anywhere else. Bonnie and Steve mean a lot to me. They are very special people. They are always giving.”

For information about the RSD coalition, visit

Click Here For The Original Article Online.


Saturday, March 10, 2007

'I can't live with neighbors like this'

Gerri Leonardis, a resident of Harbor Cove in North Port, has received many notices complaining about her pet dachshund, Gretta, barking or being walked in prohibited areas. She says she is trying to sell her home and move back to Illinois.

'I can't live with neighbors like this'

Simmering debate over dogs has resident feeling hounded

NORTH PORT -- Gerri Leonardis dreads opening her mailbox.

Harbor Cove, a mobile home park with strict rules regarding pet ownership that sits just beyond North Port's western edge, has sent her numerous letters scolding her for her dog's barking, for walking her dog on the wrong street and for having her dog tied to too long a leash in its own yard.

Her community has even asked her to leave because of her dog, a dachshund named Gretta.

And last year, Harbor Cove filed for arbitration against Leonardis through a state agency. The parties settled in mediation, and Leonardis, who has lived in the community's no-pet section for two years, won the right to keep her dog.

But she's had enough.

"I can't live here anymore," said Leonardis, who has been warned twice about her dog since the settlement was signed in August. "I can't live with neighbors like this."

While no-pet zones in such communities aren't uncommon, the war inside Harbor Cove -- a manufactured home community of people ages 55 and up -- is notable both for its duration and its intensity.

The debate here has lasted more than a decade. And while some residents here say it's not a big deal, many others refused to talk on the record for fear of retribution.

Recent events have included the vandalizing of "No Pets Allowed" signage and, in the ultimate form of passive-aggressive defiance, some dog owners have refused to pick up their animal's waste.

Indeed, the community's administration is getting several complaints a day concerning dog waste and noise. One resident recently complained about a neighboring dog's waste found in his garden, and another resident was upset about dog waste left on the shuffleboard court.

The mess has led to stricter rules about where residents can and can't walk their dogs. Dog walkers are not allowed to venture into the grassy common areas or on streets in the community's designated no-pet section, said Harbor Cove Manager Kay Conner.

"People have a right, one way or another, whether they live around pets or not live around pets," said Kay Conner, Harbor Cove's manager. "We just ask for cooperation."

Experts say keeping the peace is critical when you have a community like Harbor Cove, which consists of 805 families clustered together on 16 streets. Strict enforcement of a community's deed restrictions help keep people in line.

But for Leonardis, getting Gretta helped pull her out of depression.

The 63-year-old had been diagnosed with reflex sympathetic dystrophy, an incurable condition which affects the nerves in her foot.

Leonardis, a hairstylist who has been widowed twice, said she couldn't walk and became lonely. Although she bought her home in the no-pet section of the park, she said she saw other residents with pets and didn't think twice about getting Gretta.

"She's my right-hand girl," she said. "Without her, holy smokes. Just the love and affection she gives me, she's just a lot of company."

But shortly after Leonardis brought Gretta home, her community sent her several letters, warning her to get rid of the dog. When she didn't comply, they insisted she move, even though she couldn't walk at the time, she said.

Leonardis refused and Harbor Cove filed arbitration papers with the state Department of Business and Professional Regulation. The parties went into mediation. Leonardis, armed with a doctor's letter stating the health benefits of dog ownership, won the right to remain with Gretta – for now. The settlement also says if Gretta continues to be a problem, Leonardis will have to get rid of her.

Conner said she wouldn't comment about the case or the details of the settlement agreement.

Meanwhile, it hasn't been easy keeping the peace in Harbor Cove. Conner recently posted six signs in the no-pet section, which includes 199 homes, reminding residents and newcomers that pets are not allowed on those six streets.

Just a few days after the signs were posted, someone spray-painted over the one near the community's clubhouse.

The community has posted on its local station, Channel 57, a strict reminder: "Pets not permitted in or/on the common areas. Thank you. Manager."

"We are trying to find a place in this community where we can find a pet-friendly area," Conner said. "We don't have a whole lot of choices."

Leonardis said she feels the office is gaining ammunition to come at her again.

"I can't live like that anymore," she said. "I'm having a hard time selling because this is a hard time. But I just want out of here."

Click Here For The Original Article Online.


Support Groups Help, but It Can Be Difficult to Find or Start One

Support Groups Help, but It Can Be Difficult to Find or Start One

AKRON, Ohio - 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.

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."

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, 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.

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."



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. Also, post notices on hospital bulletin boards and doctors' offices, if allowed.


(c) 2007, Akron Beacon Journal (Akron, Ohio).

Visit Akron Beacon Journal Online at

Click Here For The Original Article Online.


Thursday, March 08, 2007

Seeking Freedom from pain

Seeking Freedom from pain
By: Bradley Schlegel
By Bradley Schlegel
Times Staff

Before she got sick, Lindsay Spengler hoped to earn a Division I softball scholarship. She targeted Virginia Tech, the school her father Michael attended, and the University of Virginia as her top choices.

More than seven years later, she is confined to a hospital bed in her room. Searing pain induced by physical contact forces her to watch television over her right shoulder.

Wearing a hospital gown and a black-and-white batting glove on her right hand, Lindsay talked about the two rare neurological diseases that define almost every aspect of her life.

For over four years, reflex sympathetic dystrophy (RSD) and Porphyria have prevented the 22-year-old New Hanover resident from feeding herself or walking.

An experimental procedure in Germany might be her final option.

"At this point, I'll try anything," said Lindsay, who requires two feeding tubes and an oxygen mask.

In Saarbruecken, Germany, doctors would place her in a seven-day, Ketamine-induced coma and "reboot" her neurological system to eliminate the pain.

"It feels like my skin is on fire," she said.

According to her website, 30 patients have benefited from the procedure.
Her parents hope to raise $180,000 by the middle of March to cover the costs, which include between $118,000 and $150,000 in air ambulance fees.

Lindsay's mother said the family is considering all options, including taking out a second home mortgage. A family friend in charge of fundraising expects the community to come through.

"The community is going to get Lindsay to Germany," said Joan Johnston. "This is going to happen. It has to happen. She's too neat a person for this not to happen."
Johnston said the informal committee, made up of around 20 people, has raised $12,000 in two weeks. On March 1 and 2, after a wave of media attention, she collected over $8,800 in donations.

Last week, Boyertown Area Senior High hosted volleyball and basketball games that raised $2,400.

Later this month, the school is hosting a liftathon, where football and lacrosse players will solicit one-cent pledges for each pound lifted.

Also planned is a day when students will be encouraged to wear blue, Lindsay's favorite color, and teachers will be asked to wear jeans. Commerative stickers will be available for a $1 donation.

"The responses have been absolutely heart-warming, Johnston said. "People have responded to her story."

Lindsay was initially diagnosed with RSD-a condition in which the brain continues to send pain signals even though an injury may not exist-after breaking her thumb the summer before she started eighth grade.

Attempting to bunt a batting-practice pitch, her thumb got in the way. Regripping the bat, she heard a pop.

Physical therapy quieted symptoms of the disease, which remained dormant until she sprained her right ankle while playing basketball in November 1998.

Lindsay didn't allow the ankle injury to prevent her from starting at center field as a freshman on Boyertown's varsity softball team.

A year later, a more severe sprain forced her to undergo eight spinal blocks.
Her mother Sharon Spengler noticed her daughter's pain dissipate with each treatment.

"Lindsay is a fighter," said Sharon, a registered nurse who quit her job at the Pottstown Hospital in fall 2002 to care for her daughter. "So when I hear her complain, I know she's in pain."

By spring 2001, the disease had overtaken Lindsay's athletic gift. Forced out of the Bears lineup midway through her junior season, she relied on a wheelchair to get to class.

She complained of constant fatigue and an inability to concentrate despite sleeping 20 hours a day.

Soon after completing her senior year at home in June 2002, Lindsay was admitted to Thomas Jefferson Hospital in Philadelphia.

She spent nine months on a ventilator after suffering respiratory failure, and she contracted pancreatitis before she was diagnosed with porphryia, a deficiency of hemoglobin in red blood cells that transports oxygen throughout the body.

"I was on every floor in the hospital," Lindsay said. "I knew everybody."
Despite getting discharged in January 2004, an infection aggravated the porphryia and sent her back to the hospital.

Sharon said the disease was poisoning her daughter's body.

Ten months ago, the RSD intensified and began attacking her entire right leg.

Lindsay must contend with a burning sensation in her stomach and, recently, tingling in her arms.

"When I look at what Lindsay's friends are doing, it just tears me and my husband up," Sharon said.

Laying on her left side, Lindsay has little choice but to glance at the "Got Milk" advertising photos on her bedroom wall.

In the middle, two feet above a couch, is an encased article on Sean Elliot, a professional basketball player who returned to the NBA after a kidney transplant. Lindsay had kept the article in her high school locker for inspiration.

"There are times when I feel a million miles away from the whole world," she said. "And it's hard to see the light at the end of the tunnel."

Contact reporter Bradley Schlegel at 610-367-6041, ext. 240 or

Click Here For The Original Article Online.


Wednesday, March 07, 2007

Fundraiser aims to help Boyertown grad with debilitating diseases

Fundraiser aims to help Boyertown grad with debilitating diseases

NEW HANOVER -- For Lindsay Spengler, every single moment of her daily life is like living in an inferno.

The 22-year-old -- a once vibrant athlete who loved nothing more than the game of softball, and who is remembered by family, classmates and teachers at Boyertown Area Senior High School as a well-rounded student-athlete -- has been bedridden for more than four years, suffering from two debilitating diseases, reflex sympathetic dystrophy (RSD) and porphyria. The two diseases make her skin feel like it’s literally on fire, and make her life next to unbearable.

"Before her diagnoses, she was quite the athlete and a very good student," Lindsay’s mother Sharon Spengler said.

Spengler said the discovery that her daughter had RSD came after she broke her thumb during a batting practice.

She said RSD can remain dormant in people, and it is usually discovered after a person suffers some type of injury that causes pain.

Spengler explained that a person’s body experiences pain from an injury to alert the person that something is not right. But with RSD, the signal of pain from the nerves to the brain doesn’t stop even when the injury is no longer there.

"The nervous system gets off track," Spengler said.

One of the measures taken to help a person deal with their RSD, and which can often times eradicate its symptoms, is physical therapy.

Physical therapy helped Lindsay deal with the broken thumb and the RSD symptoms it triggered, as well as RSD symptoms triggered by a sprained ankle a few years later. However, a second, more severe sprain triggered RSD symptoms that never went away and even worsened.

Adding to the discomfort the RSD symptoms cause, Lindsay was also diagnosed with porphyria, which is a group of disorders characterized by a deficiency in heme, the iron-containing part of the hemoglobin in red blood cells that carries oxygen to all organs in her body.

Spengler said it’s like the "body is making toxins that poison the system."

The porphyria makes things more difficult for Lindsay because some medications for RSD adversely effect porphyria symptoms, and the number of medications she can take is limited.

"She can’t walk, she cannot eat, she hasn’t eaten in four years," Spengler said. "The nausea is terrible, the fatigue is terrible."

"Some of the worst of her symptoms started the end of her junior year," Spengler said. "Her senior year she was tutored mostly at home. She was able to get to class mostly through a wheelchair. She did graduate in 2002 and her plans were to go to college and her plans were to play softball at the collegiate level."

But things didn’t go as Lindsay planned.

"Right now the pain is pretty much all-consuming," Spengler said. "For the past number of years she’s pretty much been confined to bed. Since 2002 she hasn’t walked. She has two stomach tubes (to be fed)."

Her mother explained that any sensation on Lindsay’s skin can spark searing pain.

"The pain is so bad, she just explains it as if someone threw gasoline on your body and lit a match," Spengler said. "It just burns."

"This morning she said it was like she was being baked in an oven," Spengler said.

As if the physical pain is not enough for Lindsay to suffer, she is also faced with the guilt that her condition impacts the way her entire family functions.

"It changes family dynamics," Spengler said. "As anyone knows, when you have someone really sick in your family, if someone has cancer, it changes dynamics. The person who’s suffering suffers because they know that you’re not doing something because they need you."

Lindsay has undergone several surgeries, and endured an obscene amount of prodding and testing and treatments, and thus far, nothing has worked.

"It’s very difficult to see someone you love hurting that much and you can’t do anything to help them," Spengler said.

But there is still hope.

Lindsay’s family is hoping she will have the opportunity to undergo an experimental treatment, although it’s only available in Germany and will be at cost to Lindsay’s family, that could possibly reverse her symptoms, and enable her to regain a normal life.

But first, her family must raise the funds, between $160,000 and $180,000, for her to travel to Germany and undergo a Ketamine-induced coma, which her mother hopes will "reset" her body so the pain and RSD symptoms are gone.

"Presently, doctors from Hahnemann Hospital feel Lindsay is a good candidate for the Ketamine-induced coma," Spengler said. "They feel she is a good candidate for this treatment because all of the treatments she’s had so far haven’t worked.

"Even through this, as much pain as she is in, she still worries about the rest of us," Spengler said. "I know that there are times that I know it hurts so bad, but she doesn’t cry until I leave the room, because she doesn’t want me to know how bad it hurts her."

"She just wants to go over there so she can get some relief from this pain and hopefully get back to school and get her life back," Spengler said.

Spengler’s family is not alone in their concern for Lindsay.

Boyertown Area High School, Lindsay’s alma mater, is holding its fifth annual B-Town Showdown, which pits students against faculty in basketball and volleyball matches, at 6 p.m. Thursday in the high school gymnasium.

The community is welcome to come out for the event being organized by the Student Council. The best part is all the proceeds from the event will go toward the fund for Lindsay’s treatment.

"Lindsay was a former Student Council member and she was pretty active when she was here," said, Jeff Kusniez, Student Council advisor. "This is for us one of those perfect examples of how we can give back to someone who is important to us, and someone who is important to the community and someone who is one of our own."

Kusniez said the idea to donate the proceeds to Lindsay’s treatment fund came from Dan Fries, a teacher in the high school, who taught Lindsay.

Kusniez said the cost for admission to the event is $2 for students and $3 for adults, but if someone wants to give a larger donation, the school will gladly collect it and make certain it goes to Lindsay’s fund.

The fundraiser is crucial to Lindsay’s ability to receive the treatment in Germany because the family must absorb the total cost, and they’re hoping Lindsay will be able to receive the treatment by the end of March.

"The support to get Lindsay to Germany would be amazing," Spengler said.

Joan Johnston, a family friend, said that the community support is appreciated and so important to helping Lindsay.

"Without this treatment, Lindsay has no life," she said. "This really is the opportunity to give a 22-year-old back some sort of life."

More information on Lindsay Spengler, RSD and porphyria, and for more information on how to help Lindsay get to Germany, visit

Donations that will directly fund Lindsay’s treatment in Germany, which will cost an estimated $170,000, can be made by sending a check made out to "RSD" to the National Penn Bank, 2900 N. Charlotte St.,Gilbertsville PA 19525. Donations may also be made online on Lindsay’s Web site.

©The Mercury 2007

Click Here For The Original Article Online.


Monday, March 05, 2007

Struggling to live a life consumed by pain

Struggling to live a life consumed by pain
Brandon Stahl
Duluth News Tribune

Mornings are the hardest. The pain usually wakes her up about 8, with the excruciating stabbing and burning sensations starting in her calf before shooting up into her hip, the intensity so severe that within minutes tears stream down Deborah Darker-Spears’ face.

Her boyfriend, Charlie Rosenberg, wants to reach out and grab and hug her and tell her it will be OK, but being touched is the last thing she wants.

As soon as she opens her eyes, she reaches for 100 milligrams of a heavy-duty narcotic she sets out on her bedside table the night before, knowing that this will happen, the same as it does every morning, and then she waits for the drug to kick in. It will be just enough for Darker-Spears, 49, to function for the day.

It never used to be like this. She is brought to tears when she reminisces about when she could get out and travel to London, Paris or Mexico. Now she’s afraid to leave her Cloquet home for fear that the slightest bump into her leg could send her into unspeakable pain.

“There are some days when I can ignore it, where pain isn’t my priority. But most days, it’s my priority. It dictates what I do,” she said. “It has taken away my life. I’ve lost my home. I’ve lost most of my friends.” Darker-Spears’ story is typical for someone whose life is controlled by constant, chronic pain. In her case, Darker-Spears is afflicted with Complex Regional Pain Syndrome.

THE WORST KIND OF PAIN? Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy Syndrome (RSD), is a malfunction of the nervous system that causes nerves to send constant pain signals to the brain. Sometimes, a gust of wind or wrong touch from a piece of fabric can send a patient spiraling into pain. It’s not known what causes it or how to cure it, though in some cases spontaneous remission has been reported. CRPS is extremely rare — different estimates place the number of people afflicted at 200,000 to 1.2 million — and often is set off by a seemingly minor injury: a sprained ankle, a broken bone, torn tissue in a knee or shoulder.

We will see a perfectly normal guy who has a sprained ankle and now they have it,” said Dr. David Nelson, chairman of SMDC’s pain management program. And it can develop into some of the worst kind of pain imaginable. A survey conducted by the RSD Syndrome Association found that the average pain score reported by people afflicted with the syndrome was 7.9 out of 10, with 35 percent reporting that their pain was a 10. Depression is a common side effect, with 47 percent of those surveyed saying they thought about ending their life, and 15 percent saying they acted on the impulse.

“It feels like [my hand] is always broke,” said John Wanglie, 47, of Duluth. “It’s that much pain. It goes up the neck and radiates down my left arm and down to my leg.” Four years ago, while working as a nursing assistant on a surgical ward of St. Mary’s Medical Center, he got his hand caught between a table and a food cart, breaking his middle finger. Surgery repaired the break, but CRPS set in on the hand, rendering everything but his index finger and thumb immobile. Wanglie said he takes a laundry list of pain pills just to get through the day, even though they make him disoriented and blur his vision. “They’re supposed to knock out the pain completely, but it doesn’t,” he said. “You constantly have it. You always feel like crying.” Now permanently disabled, his wife, he said, has to help him get dressed and do all of the chores around the house. Since his worker’s compensation ran out, her work as a nurse has become their sole income as he waits to see if he’ll be approved for Social Security disability payments. He applied for that in August.

Many people with chronic, disabling pain who are forced into disability come to loathe the barriers set up to obtain financial assistance. Many can spend years waiting to get help, and some are forced to go to litigation. “People have problems trying to prove it,” said Jim Broatch, executive director of the RSD Syndrome Association. “There is no specific diagnostic test to rule in or out definitely that you have it.”

“ SUPPORT For Rochelle Steinhilb, 38, of Superior, finding herself in court and battling to get medical reimbursement was simply a way of life. “It’s not that people believe that you don’t have it, or that it doesn’t exist,” said Steinhilb, who developed CRPS in 2000 after tearing the rotator cuff in her right shoulder while working as a physical therapy and nursing assistant at Miller-Dwan Hospital. “It’s that getting proper medication and treatment can be so costly.” Steinhilb estimates that her medications cost about $5,000 a month. While that bill is paid by worker’s compensation, she said it took several years of fighting for the courts to make that happen. Living in Superior with her husband, Oscar, and three children, Steinhilb said she tries to make life as normal as possible. “I may be disabled,” she said, “but I am not going to give up getting my kids out the door.” That’s a constant challenge. Steinhilb said the pain can be so severe it impairs her vision and makes her vomit. At night, she can sleep for only about two hours before the burning in her arm and shoulder wakes her up. “Everyday tasks become much more difficult,” she said. “The burning and throbbing is constantly there.” For the past six months, Steinhilb has led an RSD support group, which meets the third Saturday of every month at the First United Methodist Church on Skyline Parkway. Up to 20 people have attended the meetings.

“It’s such an adjustment. You go through a grieving period, just like a loss of a family member,” she said. “It affects anybody and everybody around you.” Darker-Spears agrees that CRPS is difficult on her loved ones, including her boyfriend, who has to do most of the household tasks and has to be careful to not even brush his fingers across her leg. “Why he stays year after year after year is beyond me,” she said. “It’s very hard to be pleasant to people when you hurt,” she said. “People don’t understand that.” She developed CRPS three years ago after knee- replacement surgery. Before that, she had worked in the service industry, most recently as an associate at a jewelry store at Miller Hill Mall. After developing CRPS, she was forced to sell her home to pay bills and move to a place that was more accessible. Twice she’s gone into a nursing home because she couldn’t care for herself. Two years ago, the pain became so unbearable that she considered suicide and checked herself into Miller-Dwan’s psychiatric unit.

Now, she said the disease has spread from her knee and into her hip, and worries that it might be going into her arm. The pain is so severe that she’s often considered amputating her leg, she said, but instead hopes for the day that the CRPS will go into remission. “I don’t honestly believe it’s going to happen,” she said, “but you have to have something to hope for.”

BRANDON STAHL covers health. He can be reached at (218) 720-4154 or by e-mail at


Disabled artist makes gift to honor fallen Marine

Disabled artist makes gift to honor fallen Marine

(Aiken County) February 23, 2007 - It's become one of the toughest stories journalists have to report, cover the death of an American killed in war. Many times, people watching at home wish there was something they could do to say thank you to the families that sacrificed. WIS' Angie Goff was there when one man took a trip to pay tribute to one of South Carolina's Bravest.

With the wind, it feels like 40 degrees, the cold hitting one man harder than those in his company. Jim Middlebrooks says, "My shoulders feel like they've been beat with a baseball bat."

At a ceremony to honor heroes, Middlebrooks braves his RSD: a severe pain disease that makes his body burn in weather like that. "Most of all, it's a feeling of fire ants all over my hands."

For 45 minutes the Irmo native forgets about his pain. Because now meeting the family of a patriot is more important.

Lt. Colonel Rob Dillon with his father dedicate Aiken County's new Purple Heart Memorial, a tribute to those wounded in war. "Let's not forget these heroes and the sacrifices they continue to make today and always."

One of those heroes was their brother and son Marine Corporal Matthew Dillon. The 25-year-old was killed by a roadside bomb in Iraq just before Christmas. Matthew's father, Neal Dillon, says, "I think he would have looked down at this ceremony today as one he probably respected the most."

WIS first met the Marine's father right after he learned he lost his son. We were invited into his home where he shared pictures and memories with us so we could tell the story of who Matthew Dillon was.

Middlebrooks was one of many watching who wanted to reach out. Despite his disability, he decided that December day he would use his gift of drawing to help a family heal. "I'm homebound and it give me a privilege to keep my arm working and to think about other people."

With only a picture of Dillon, the artist would sketch the Marine's portrait. At most, he managed drawing only three hours a day, stopping when the wrath of his RSD was too much. "I think about the valor, the courage and the honor these men died for. It's the least I could do."

It took Middlebrooks two months to finish the piece of art. The final product is a powerful labor of love that the parents of the man in the picture didn't even know was in the making until now, 60 miles away in Aiken County near the Marine's hometown.

To the crowd and Dillons' surprise, the ceremony ends with an unrehearsed presentation, "I'm grateful for what your son did."

Middlebrooks says, "When I heard of Matthew's death I wanted to give something special to his parents and to his family."

The gift moves Lucy Dillon, "To give to our family, to have something to cherish in his memory, it's just very special."

Rob Dillon is also impressed, "He was an American and he saw another, Americans hurting and in need and he felt compelled to do something and my message to him is I thank him very much."

Middlebrooks says, "I got a little sentimental there at the end cause I could see the joy in their families' eyes."

Mr. Dillon already has a spot picked for the portrait, "For him to take the time with his handicap and do that for our son, that picture will go at the top of all the plaques we've gotten because it's a personal thing on his part."

Middlebrooks hopes the work carries a message, "I hope they walked away with the feeling knowing there are people out there that care that they don't even know."

Middlebrooks wants to continue using his talent to help other families. He has already started the portraits of two other South Carolina soldiers. The only thing he needs help with is framing the pieces.

If you'd like to help fund the framing you can make donations to:

Jim Middlebrooks
c/o Ramco Framing
7581 Saint Andrew Rd.
Irmo, SC 29063
(803) 781-4439

Reported by Angie Goff

Posted 6:07pm by Chantelle Janelle

Click Here For The Original Article Online.


Thursday, March 01, 2007

Living With Pain: Ellen's Story *with video

Complex Regional Pain Syndrome


Living With Pain: Ellen's Story
Reporter: Stephanie Ross

(Source: The Mayo Clinic)


Complex regional pain syndrome (CRPS) - one type of which was formerly known as reflex sympathetic dystrophy syndrome - is an uncommon, chronic condition that usually affects your arm or leg. Rarely, the disease can affect other parts of your body. You may experience intense burning or aching pain along with swelling, skin discoloration, altered temperature, abnormal sweating and hypersensitivity in the affected area.

The nature of CRPS is puzzling, and the cause isn't clearly understood.

Women are more likely to be affected by CRPS than men are. The condition is most common in people between the ages of 40 and 60, but it can occur at any age. Treatment is most effective when started early in the course of the syndrome.

Signs and symptoms

CRPS occurs in two types, with similar signs and symptoms but different causes:

Type I. Previously known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn't directly damage the nerves in your affected limb.

Type II. Once referred to as causalgia, this type follows a distinct nerve injury. Signs and symptoms of both types of CRPS vary in severity and duration.

The main symptom of CRPS is intense pain, often described as "burning." Additional signs and symptoms include:

Skin sensitivity.

Changes in skin temperature, color and texture. At times your skin may be sweaty; at other times it may be cold. Skin color can range from white and mottled to red or blue. Skin may become tender, thin or shiny in the affected area.

Changes in hair and nail growth.

Joint stiffness, swelling and damage.

Muscle spasms, weakness and loss (atrophy).

Decreased ability to move the affected body part


Complex regional pain syndrome may result from disturbances in the sympathetic nervous system, the part of the nervous system that controls blood flow and your sweat glands. This syndrome commonly follows an acute problem.

Many cases of CRPS occur after a forceful trauma to an arm or a leg, such as a gunshot wound or shrapnel blast. Other major and minor traumas - surgery, heart attacks, infections, fractures and even sprained ankles - also can lead to CRPS. It's not well understood why these injuries sometimes trigger CRPS.

The syndrome was first described after the Civil War when soldiers continued to report severe pain after their wounds had healed. It was often referred to as "hot pain" during that period.


Dramatic improvement and even remission of CRPS is possible if treatment begins within a few months of your first symptoms. Treatment options include:

Medications. Doctors use many types of medications to treat the symptoms of CRPS. Over-the-counter nonsteroidal anti-inflammatory drugs (NSAIDs) such as aspirin, ibuprofen (Advil, Motrin, others) and naproxen sodium (Aleve) may ease pain and inflammation. In some cases, doctors may recommend prescription medications. For example, antidepressants, such as duloxetine (Cymbalta), and anticonvulsants, such as gabapentin (Neurontin), are used to treat pain that originates from a damaged nerve (neuropathic pain). Corticosteroids, such as prednisone, may reduce inflammation.

Your doctor may also have you take bone-loss medications, such as risedronate (Actonel) and calcitonin (Miacalcin). Opioid medications may be another option. Taken in appropriate doses, they may provide acceptable control of pain. However, they may not be appropriate for people who have a history of substance abuse or lung disease.

Some pain medications, such as COX-2 inhibitors (Celebrex), may increase your risk of heart attack and stroke. It's wise to discuss your individual risk profile with your doctor.
Applying heat and cold. Applying cold may relieve swelling and sweating. If the affected area is cool, applying heat may offer relief.

Physical therapy. Gentle, guided exercising of the affected limbs may improve range of motion and strength. The earlier the disease is diagnosed, the more effective exercises may be.
Sympathetic nerve-blocking medication. Injection of an anesthetic to block pain fibers in your affected nerves may relieve pain in some people.

Transcutaneous electrical nerve stimulation (TENS). Chronic pain is sometimes eased by applying electrical impulses to nerve endings.

Biofeedback. In some cases, learning biofeedback techniques may help. In biofeedback, you learn to become more aware of your body so that you can relax your body and relieve symptoms of pain.
Spinal cord stimulation. Your doctor inserts tiny electrodes along your spinal cord. A small electrical current delivered to the spinal cord sometimes results in pain relief.

Coping skills

Living with a chronic, painful condition can be challenging, especially when - as is often the case with CRPS - your friends and family don't believe you could be feeling as much pain as you describe. Share information from reliable sources about CRPS with those close to you to help them understand what you're experiencing.

Take care of your physical and mental health by following these suggestions:

Maintain normal daily activities as best you can.

Pace yourself and be sure to get the rest that you need.

Stay connected with friends and family.

Continue to pursue hobbies that you enjoy and are able to do.

If CRPS makes it difficult for you to do things you enjoy, ask your doctor about ways to get around the obstacles.

Keep in mind that your physical health can directly affect your mental health. Denial, anger and frustration are common with chronic illnesses.

At times, you may need more tools to deal with your emotions. Professionals such as therapists or behavioral psychologists may be able to help you put things in perspective. They can also teach you coping skills that may help you, including relaxation techniques.

Sometimes, joining a support group, where you can share experiences and feelings with other people, is a good approach.

A local Colorado blog on the topic can be found at this web address:

Click Here For The Original Article Online.