Thursday, October 25, 2007

Heartfilledbaskets.com Donates Sales to Aid Over 2 Million People Suffering From Unknown Disease RSD


Heartfilledbaskets.com Donates Sales to Aid Over 2 Million People Suffering From Unknown Disease RSD


Reflex Sympathy Dystrophy (RSD) is a relatively unknown disease even though over two million people have the disease. This holiday season Heartfilledbaskets.com will donate 5% of its holiday sales to this organization. This money is to help with research, the creation of educational materials, and to maintain the RSD website.

Phoenixville, Pennsylvania (PRWEB) October 25, 2007 -- Entrepreneur Alecia Gratton (www.heartfilledbaskets.com) is on a mission to raise money for Reflex Sympathetic Dystrophy. Five percent of all Christmas sales will go directly to the Reflex Sympathetic Dystrophy Association, which funds research, the creation of educational materials for people with CRPS/RSD and the healthcare community, and maintaining the website http://www.rsds.org

Unfortunately, RSD (Reflex Sympathetic Dystrophy Syndrome) is inadequately understood by patients and healthcare professionals. It is a chronic neurological syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, extreme sensitivity to touch.

Alecia, who has RSD, says, "Since RSD is still an unknown disease it is difficult to get funding for research. My husband and I would like to try to help as much as we can, but because RSD has destroyed our finances, we are unable to help more. I feel bad about that, but want to try to help others who are suffering with this painful disease. I want more people to know about and how it affects people's lives."

Sadly, this disease effects more people than one would realize. According to the RSDSA website (http://www.rsds.org), "Reflex Sympathetic Dystrophy Syndrome (RSD) is a chronic pain syndrome characterized by severe and relentless pain that affects between 200,000 and 1.2 million Americans." This number does not include the people who have not been diagnosed, or are being misdiagnosed.

The RSDSA organization was founded in 1984 as a way to promote public and professional awareness of RSD/CRPS and to educate those afflicted with the syndrome, their families, friends, insurance and healthcare providers on the disabling pain it causes.

Alecia says the following things are needed:
· Volunteers are needed to hold events that will help finance research about this disease
· You can donate through the association's website http://www.rsds.org
· You can give to the United Way for RSD
· You can donate a car, truck, etc., as a tax deductible donation
· You can visit http://www.igive.com and designate RSDSA as your charity of choice

About Alecia:

Alecia is a wife and mother to her adult son. Before a tragic car accident that left her disabled in 1997, she was a Registered Nurse for many years. Alecia suffers from RSD that has her dealing with severe pain daily. In 2004, her husband started the online store (www.heartfilledbaskets.com) as a way to teach her how to use the computer. unfortunately it didn't work out as well as they would have liked. Her illness has left her unable to resume a work schedule. But her husband Frank admits that the business has grown into much more than a hobby, because it is now a way for them to try and supplement her lose of income for the last 10 years and into the future.

Today, Alecia provides emotional support to Frank as much as she can as he works to sell gift baskets and a variety of gifts through the online store. The website offers corporate and personal gift baskets.

More than anything she wants to do something about the lack of funds for research in finding a cure for RSD. Just doing something means a lot to both her and her husband. She wants others with this disease not to give up, to do things to keep their minds stimulated, and most of all, to eventually be free from the daily pain.

For more information on how to purchase their products to support RSD, contact Alecia or Frank at 610-993-5810 or visit the website HeartFilledBaskets.com .

Contact: Alecia A. Gratton, Frank Gratton, Owner
Address: 524 Ringold Street Phoenixville, PA 19460

Phone: 610-993-5810
Toll Free: 1-888-558-3837

Website: http://www.heartfilledbaskets.com








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Sunday, October 21, 2007

Chronic Pain Syndrome Hits Women Harder

Chronic Pain Syndrome Hits Women Harder

Jennifer Wider, M.D.
Society for Women’s Health Research
May 18, 2006

If you’ve ever been in pain, you know it isn’t easy. Sometimes it can place serious obstacles in your path. But for hundreds of thousands of Americans, mostly women, who suffer from a chronic pain syndrome known as reflex sympathetic dystrophy syndrome (RSD), the pain can be constant and excruciating, making it difficult to even get through the day.

For Tracy Zuckerman who currently resides in Florida, the pain was disproportionate to her injuries. Years ago, she was in a head-on collision and the air bag in her car crushed her left hand and the right-side of her jaw. When her healing time was abnormally prolonged, it became quite clear that something else was wrong. Despite the fact that her hand wasn’t broken, the swelling was so severe that she couldn’t open it.

"My hand was not healing, it was swollen and discolored," Zuckerman said. "Someone would brush by me, barely touch me, and I’d have severe pain. I consider myself lucky because my orthopedic surgeon, who had seen a case in medical school, diagnosed me early on with complex regional pain syndrome."

Sometimes called complex regional pain syndrome (CRPS), RSD results when the nervous system doesn’t function properly. Instead, the nerves send incessant pain signals to the brain and the body reacts accordingly. It usually occurs as a response to a traumatizing incident such as an accident or surgical procedure. Like other chronic pain syndromes, RSD is more common in women.

"Epidemiological studies, and a recent web-based survey that we conducted, indicate that CRPS is more common in women than men," said Srinivasa Raja, M.D., director of the pain medicine division and director of pain research at Johns Hopkins University in Baltimore, Md. "The reason for this gender difference in the prevalence of CRPS is not clear. Such a female preponderance is, however, not unique to CRPS as other chronic pain states are also more frequently observed in females compared to males."

An early diagnosis and aggressive therapy are vital for healing and proper function. Unfortunately, diagnosing RSD can be difficult, because many people and members of the medical community are not familiar with the symptoms. According to the Reflex Sympathetic Dystrophy Syndrome Association in Milford, Conn., patients with this disorder see at least five doctors before receiving a proper diagnosis.

Zuckerman began treatment right away but it took a long time to find the right combination of therapies that worked.

"I tried many different treatments for several years," Zuckerman said. Her treatments included massage therapy, physical and occupational therapy, acupuncture and nerve

blocks. "Everything is a combination," Zuckerman said. "It required a multi-disciplinary approach. I developed my own team to support me and guide me through this process, which include doctors and therapists. When it stops working, we change the approach. It’s a lot like cross training."

Echoing Zuckerman’s sentiments, Raja said "optimal treatment of this condition often requires a multi-disciplinary approach that includes physical therapy, diagnostic and or therapeutic nerve blocks and psychological consultations."

Zuckerman has learned to live with her condition, but getting well became a full-time job. "You cannot will yourself to be well," she said. "You need a team of doctors, nurses and a support group. It’s not about just taking a pill. You need to become an advocate for your own body."

New treatments are on the horizon for RSD.

"In recent years, spinal cord stimulation has shown promise as a treatment modality for cases that have not been treated successfully with conservative measures," Raja said. In addition, several academic centers have been studying the potential role of ketamine, a drug that can potentially reduce the heightened sensitivity of brain cells. More research involving ketamine is needed to make conclusions about the long-term benefits.

© May 18, 2006 Society for Women's Health Research






Click Here For The Original Article Online.



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VR helping aid stroke recovery


VR helping aid stroke recovery

By Matthew Knight for CNN
Enlarge font

LONDON, England (CNN) -- Anyone who has suffered and survived a stroke will know of its devastating consequences and will be painfully aware that the road back to a normal life is a long and frustrating journey.


But new virtual reality rehabilitation therapies, which are currently undergoing trials, are helping stroke sufferers in their fight to regain their movement and gradually rediscover their independence.

According to the World Health Organization 15 million people around the world suffer a stroke each year, with five million of those resulting in death and a further five million left with a permanent disability.

In the U.S. a person dies of a stroke every three minutes and in the UK stroke is the biggest single cause of major disability and is the third most common cause of death.

Put simply a stroke is a heart attack of the brain. Medical practitioners used to call a stroke an apoplexy -- derived from the Greek word for seizure, "apoplexia" -- because of the way it strikes people down.


Generally speaking there are two types of stroke -- those caused by blood clots in the brain and those that occur when blood vessels burst. In both instances, the brain is starved of oxygen, which leads to the damage of vital cells.

People who survive a stroke are often left with varying degrees of disability which include paralysis, confusion, loss of vision and/or speech and difficulty walking or performing basic everyday tasks.

Earlier this month, Israeli company Hadasit -- the technology transfer company of Hadassah Medical Organization -- began its Phase II Study of their Virtual Reality (VR) system for the treatment of chronic pain and stroke rehabilitation at the Hadassah University Hospital in Jerusalem.

The system is a product of multidisciplinary work in the Department of Physical Medicine and Rehabilitation at Hadassah Mount Scopus Hospital.

Shimon Shiri, a rehabilitation psychologist at Hadassah and an inventor of the VR system, told CNN how the project began.

"We were faced with more and more patients with chronic pain," Shiri said, "who seemed to suffer in spite of pain-killers and surgery. We realized that these patients may have experienced a learning process where pain was imprinted or 'burned' into their nervous systems."

Hadasit's Marjie Hadad told CNN: "We were aware of a growing body of neuropsychological evidence suggesting two major processes. Firstly, the brain undergoes changes following chronic pain and secondly, that brain plasticity is substantial." (Brain plasticity is the lifelong ability of the brain to reorganize neural pathways).

"We found virtual reality to be a realm that allows the transfer of information directly to the brain, switching the previous pathological learning to adaptive learning," Hadad said.

Dr Uri Feintuch, a computational neuroscientist at the Hadassah School of Occupational Therapy explains how the VR system is set up. "We chose not to use a Head Mounted Display (HMD) as we generally prefer not to put any cumbersome gear on patients who have suffered a stroke. After initially using a projection system we concluded that a large flat screen would do."

Patients view themselves in real time on an LCD screen and use a mouse or joystick. Small movements of the mouse by the patient create large virtual movements of the patients arm, hand or shoulder on the screen.

A video camera photographs patients and a computer simulates the functions based on the physical presence of each patient at that moment.

"The patient sees himself moving his arm, even though he really is not," explains Shiri. "The virtual experience activates the mirror neurons and induces a therapeutic effect on the brain that reduces pain and increases function. By viewing the movement of the arm without pain, the brain undergoes a corrective learning process."

So far, only a few patients have completed the trial but preliminary results have shown improvement in several areas notably significant decrease in pain and the fear of pain, increased arm functioning and an improved physical and emotional state of the patients.

The Phase II Study will be using a much improved prototype system and patients will be randomly assigned to either a VR or a control group. Clinicians will also be blind to the treatment type that the patient has received.

Hadad told CNN: "Once the system's efficacy is proven clinically in the randomized controlled trial, and the system has been approved by the appropriate regulatory bodies, we hope to offer it as a therapeutic tool for post-stroke patients."

Hadasit are also testing another system which hopes to treat tension headaches and migraines.

In April 2007, UK researchers at the University of Ulster announced the results of a pilot study which also used a VR system to help stroke patients regain use of their upper limbs.

Patients were immersed in a virtual world using a HMD with their hand placed into a flexible glove that was fitted with positional and orientation sensors. Additional sensors were attached to the patient's shoulder.

The sensors allow the patients hand and arm movements to be tracked in the virtual environment and provide the patient with visual feedback.

The environments simulated simple scenarios in the home or on the high street enabling patients to practice moving their limbs again and relearn simple tasks like eating and drinking.

Patients also received audio feedback from a virtual physiotherapist who offered encouragement during the tasks.

Study leader, Jacqueline Crosbie from the University of Ulster's School of Rehabilitation Science said: "Different virtual worlds provide rich environments to relieve the boredom of practicing what can often be repetitive and frustrating tasks."

"The system can also be configured to exaggerate small movements, increasing the feeling of achievement and improving patient motivation."

The project is unique to the UK and Ireland and Crosbie is optimistic that this form of rehabilitation therapy will considerably improve the quality of life for people living with the effects of a stroke.

It is hoped that in the future that some patients, once they are trained, will be to practice upper limb movements independently, allowing for a swifter and fuller recovery.





Click Here For The Original Article Online.





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Friday, October 19, 2007

Connecticut Girl Fights Rare Neurological Disease

Connecticut Girl Fights Rare Neurological Disease

Posted : Fri, 19 Oct 2007 15:42:36 GMT
Author : The Remotti Family
Category : PressRelease

WINDSOR LOCKS, Conn., Oct. 19 /PRNewswire/ -- The pain

Mary Remotti feels when her body is touched by the even

the softest bed sheet or as she lies motionless on her

bed washes over her like the heat of an intense fire.

Her eyes water as she endures a constant burning,

tingling pain, which she cannot escape.

Remotti is an 18-year-old Connecticut girl who has spent

the last two years of her life confined to her bed

suffering from Reflex Sympathetic Dystrophy (RSD)also

known as Complex Regional Pain Syndrome (CRPS). The

disease is severely debilitating, and Remotti has

experienced some of the disease's worst symptoms

including paralysis, intense muscle spasms, swelling

and discoloration of her limbs, and chronic sharp

burning pain.

Just before the debilitating symptoms of RSD began

to plague Remotti in 2005, she was actively involved

in the Fire Department Explorers, taking care of

horses, and attending a vocational agricultural high

school. She was looking forward to getting her

driver's license, attending college and becoming a

Certified Firefighter I. Then in September of 2005,

she woke one morning unable to move her right leg

and was in severe pain. A short time later she lost

the ability to move her left leg. Since then, she

has been unable to walk and recently lost use of her

arms. She has been hospitalized frequently, prescribed

more than 100 medications, and subjected to a

multitude of invasive treatments, yet nothing has

helped her condition.

In August 2007, Remotti was rushed to the hospital

for "seizure-like activity" and was admitted to the

intensive care unit at Hartford Hospital for two

weeks. It was determined that she was experiencing

severe convulsions or spasms associated with RSD.

Once in stable condition, Remotti was discharged

and flown to Florida to receive consultation from

Dr. Anthony Kirkpatrick, a leading international RSD

researcher. Kirkpatrick determined the only course

of treatment available to treat RSD as severe as

Remotti's is Ketamine Coma Therapy, a clinical trial

procedure being conducted in Monterrey, Mexico. The

treatment would place Remotti in a coma for seven

days and her brain will essentially "reset" itself

and trigger her nervous system to send appropriate

signals to her brain. "Scary is knowing that I'm

never going to walk again," Remotti explained. "I

would rather try the coma therapy than live with

this pain." There are risks associated with the

trial treatment, but many patients like Remotti who

have severe RSD have had success. Remotti's

immediate family supports her decision to pursue

the Ketamine Coma Therapy. Transportation to and

from Mexico and the treatment itself are

out-of-pocket expenses for the Remotti family as

their insurance does not cover medical expenses

associated with this treatment. They must raise

$200,000 to fund their daughter's treatment.

Remotti hopes to begin the Ketamine Coma Therapy

treatment by mid-November. She has stated that her

only wishes are to be free of the fiery pain and to

be able to move again, resuming life where she left

off two years ago.

On Sunday, Oct. 21, two Connecticut fire departments

-- the Colchester-Hayward Fire Department and the

Windsor Locks Fire Department -- will arrive at

Remotti's residence in fire trucks to present her with

a donation check to support her Ketamine Coma Therapy

treatment. Prior to losing the use of her limbs,

Remotti hoped to train to become a fire fighter.

The check will be presented at 12:30 p.m. at Remotti's

residence, 65 Smalley Road, Windsor Locks, CT 06096.

Members of the media are welcome to attend.

To learn more about Mary Remotti's fight to be free

of her debilitating symptoms of RSD and more about

RSD symptoms and treatments visit her Web site at

http://www.marys-wish.com/

or contact James Remotti at 860-254-4735.


The Remotti Family






Click Here For The Original Article Online.




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Wednesday, October 17, 2007

Rocking out to raise money for RSD research

Science&Health:


Rocking out to raise money for RSD research

Teenager spreads word of Reflex Sympathetic Dystrophy Syndrome by holding concerts

One of the most painful experiences for Ashley Goodall is when a person walks by.

The 16-year-old high school student from Bakersfield was diagnosed with a condition called Reflex Sympathetic Dystrophy Syndrome (RSD) when she was 8, and faces constant pain from stimuli as small as the breeze created by a person walking past her.

RSD, also known as complex regional pain syndrome, is a condition in which the sensory system of one part of the body gets turned on, leading to increased sensitivity to pain out of proportion to its stimulus.

“The pain is very excruciating ... it’s a stabbing, shooting, burning kind of pain,” said Lonnie Zeltzer, director

of the pediatric pain program at UCLA.

At one point, the pain was so bad for Goodall that she had to stop going to school because she could not be touched.

But instead of silently suffering from the condition, she decided to actively fight against RSD by forming a nonprofit organization with her mother called “Rock Out to Knock Out RSD”, to raise money for RSD research at UCLA through concerts.

The money raised by the organization will be used to provide the Pediatric Pain Program at UCLA Mattel Children’s Hospital with money for research for RSD as well as to purchase medical supplies and to teach others about the syndrome.

People suffering from RSD, often triggered by traumatic incidents such as accidents or invasive medical treatment, have a malfunctioning nervous system where neurons misfire, sending multiple pain signals to the brain.

RSD is usually limited to one part of the body, but can spread and cause temperature sensitivity and difficulty with certain types of movement.

Zeltzer added that about 200,000 to 1.2 million people, mostly women, are affected by RSD.

Before it was determined that she suffered from RSD, Goodall spent seven years visiting over 10 doctors, and in one misdiagnosis she almost had her arm amputated because a physician believed it was infected.

Once she was properly diagnosed, she underwent treatment, which for RSD patients can include medication, physical therapy and psychological support.

Though she had a very complete recovery, Zeltzer said she had a relapse, which is not uncommon.

Before her visit to Zeltzer in the pediatric pain program, where she was diagnosed, some people started to believe that she was making up her syndromes.

“It was hard to explain to people what I had. People thought I was making it up,” she said.

Goodall’s mother, Lori, said it was frustrating to witness her daughter’s difficulty in being properly diagnosed.

“It’s very difficult to see your child screaming in pain, and going through a ton of doctors to see what was wrong with her,” she said.

Though the idea started several years back, Goodall’s project became a reality last year, when $5000 were raised at the first concert event.

The second concert took place this past Saturday in San Luis Obispo where local bands Seed and Mystic Red performed.

Ashley’s mother said her daughter’s efforts are in the hope of helping families avoid repeating their difficulties in properly diagnosing RSD.

“I’m very proud of her,” Lori said.

“She does it not for the recognition, but so that other people won’t have to go through the same thing she did. So others won’t have to wait 7 years before finding out what is wrong.”

Goodall said she donated half of the proceeds and will use the rest to plan the next event.

She said she has received offers for help from as far as Canada and New Zealand.

Zeltzer said given Goodall’s difficulties, her efforts were selfless and commendable.

“Its unusual to have an adolescent still in high school take their condition and turn it into something positive,” she said.

“I think she’s a remarkable young woman who is dedicated, knows what she wants and goes after it. She exhibits tremendous strength and courage. Despite her own pain, she is still working to help others.”





Click Here For The Original Article Online.





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Tuesday, October 16, 2007

Battling chronic pain


Linda Berl had to give up flying after a fall from her front porch led to persistent leg pain.
(Sun photo by Christopher T. Assaf / October 9, 2007)



Battling chronic pain

Implants short-circuit signals to the brain


The crash that grounded Linda Berl had nothing to do with the Piper Cherokee that she flew to shuttle needy Eastern Shore patients to local hospitals. What got her was a low-altitude tumble from the front porch of her Delaware home in 2001 that left her with a broken leg and persistent, debilitating pain.

"Sometimes I'll feel like my foot is on fire," she said. "It feels very deep, like it's in my bones."

The pain dominated Berl's life for years, but now the 47-year-old Smyrna resident hopes to return to flying with the help of a spinal cord stimulator -- a device that Johns Hopkins doctors implanted under the skin of her back to override pain signals traveling from her body to her brain.


The stimulators, which cost $30,000 to $40,000, are a last resort for patients who suffer from severe chronic pain that physical therapy and drugs can't relieve. And their use is increasing -- along with the debate over their effectiveness.

Experts say implant procedures have expanded about 20 percent annually in recent years. One manufacturer estimates that 40,000 devices have been implanted in the past year alone.

Some doctors say they should be used even more often -- and earlier in a patient's treatment. But skeptics say that evidence the devices work is shaky, and that their pain-fighting ability is often short-lived.


"What is not really known is the long-term effectiveness," said Judith A. Turner, a pain researcher at the University of Washington School of Medicine. "And with chronic pain, that is the real question."

Doctors typically use stimulators on patients who suffer chronic pain in their lower bodies. The pain may result from a number of conditions, including complications from lower-back surgery, an inflamed spinal cord and nerve damage from a leg injury.


Dr. Paul Christo, the Johns Hopkins surgeon who implanted Berl's stimulator, said the ancestors of these devices date back to Roman times, when doctors placed torpedo fish -- a species of electric ray -- under patients' feet to relieve pain from headache and gout.

In the 1960s, researchers developed stimulators that applied current directly to patients' spinal nerves through electrodes running along the spine. They believe the impulses override pain signals traveling along the spinal cord, much the way turning up the volume on your TV can help drown out the noise of a neighbor's radio.


"The theory holds that if you stimulate the large fibers of the spinal cord," Christo said, "it closed the gate to painful input from smaller fibers."

Authorities say early skepticism about stimulators gave way to overprescription for patients who got little real help from the devices. "There was a period of time when they were adopted enthusiastically and uncritically," said Dr. Richard B. North, a neurosurgeon at Sinai Hospital who has helped design spinal stimulators.


That, in turn, led to renewed skepticism that lingers today. "It's still underutilized, compared to other treatments for pain," North said.

But Turner argues that the stimulator's effectiveness is still in question -- in part because it's so difficult to determine whether pain relief is due to the therapy or to the power of positive thinking.. "It's impossible to tell if it's a real effect or a placebo effect," she said


Previous studies have suggested that effectiveness fades after two or three years, she said, and "the complication rate is fairly high.

"There have been some encouraging results for some patients in the short term," she added. "But we need to know more about the longer term."


In Berl's case, the stimulator has worked where other therapies have failed. The fall from her porch broke her leg, and doctors had to shore up the fracture with a large metal rod and several screws. When her agony failed to subside as she healed, doctors diagnosed complex regional pain syndrome (CRPS).

"I was insane with the pain -- I couldn't get away from it," she said. "I knew it should be disappearing, but it didn't."


The symptoms of CRPS were first described by Silas Weir Mitchell, a Civil War doctor who reported that soldiers complained of a terrible burning pain that lingered long after their gunshot wounds should have healed.

The exact cause of this chronic pain is still unknown. In some cases, it can be traced to nerve damage from trauma -- but the nerves often appear undamaged, and the pain can spread to an area much larger than the original injury.


One theory holds that the initial trauma accustoms sensory nerves to transmitting strong pain signals, a phenomenon known as "windup." The injury heals, but the nerves continue to bombard the brain with the pain messages.

A related mechanism, known as "central sensitization," may also be at play. Here, nerves higher up in the nervous system, in the brain or spinal cord, become oversensitized after an injury.


This, in turn, makes the whole body more sensitive to pain, and some researchers say that explains a number of chronic pain disorders, including CRPS, fibromyalgia and jaw conditions known as temporomandibular disorders (TMD).

Early this summer, University of Maryland Dental School researchers found that women are more likely than men to become sensitized to pain, which might explain why they are more prone to chronic pain disorders.

For CRPS patients, the pain can be all-consuming. "Some people can't tolerate a light touch to their leg, not even the feeling of a bedsheet touching them," said Christo.


Berl said she saw numerous doctors before Christo, but none relieved her worsening pain.

"Everyone would scratch their heads and give me a different disorder," she said. "They tried everything on me."


That meant various types of physical therapy and a variety of pain drugs, including powerful opioids such as oxycodon and hydromorphone. "They told me I was at the dosage amount that should be lethal," she said.

The combination of pain and the mind-numbing drugs became so debilitating that she quit her job as a high school guidance counselor and stopped flying -- a hobby she'd taken up in college and continued after marrying an aircraft mechanic.


Before her injury, she volunteered to fly residents of the Chesapeake Bay's Tangier Island to the Eastern Shore for medical treatment. "I would just swoop down into Tangier," she said. "We would fly them and eliminate a lot of travel time."

About four years ago, with her own medical problems escalating, she sold her plane, which her students had named Sky Dancer.


In June 2005, Christo implanted a spinal cord stimulator in Berl's back. A remote control allows her to adjust the strength of the electrical impulses, which are delivered to the spinal nerves through wire electrodes. "If I have a bad pain day, I can turn up the stimulation higher," she said. "It's actually a buzzing in your body. I don't know that it makes the pain go away, but it almost covers it. You don't feel the pain."

She is grateful for the respite, she said, even if the pain eventually returns. "I was in the fetal position 24 hours a day," she said. "Now I'm able to get around, to shop, to do a little bit of housework."


One thing is certain: After the stimulator's battery dies in three to seven years, she will have to replace it with a new device. "I know in the future there is another operation," she said, "but it's worth it."

On a recent afternoon at Smyrna Airport, she rolled out the new Piper Cherokee she bought after the stimulator was implanted. She still won't fly alone because she still has difficulty moving her mended leg, but she taxied the plane around the runway. "I kept thinking, just a little faster and I'd be up," she said.


"I haven't named it yet," she said of the new aircraft. "I don't want too get attached, in case I can't fly it. But even if I can't, I'll find a plane I can fly."






Click Here For The Original Article Online.




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Wednesday, October 10, 2007

Local family asks for help with handicapped accessibility



Local family asks for help with handicapped accessibility

A Bradford family’s prayers have fallen just short of being answered and they are hoping maybe someone in the community can help.

Nancy Newkirk explained Monday that her husband Greg, 42, is disabled, afflicted with RSD — reflex sympathetic dystrophy. The veins in his legs are thinning, causing him to pass out randomly from standing or from exerting himself.

Because of that, he is wheelchair bound. With the Pennsylvania Access Card, he qualifies for a power wheelchair.

“On Thursday, they brought the power chair for him to make sure it was accessible all through the house,” she explained.

But there’s a catch.

“There’s a condition on the contract that we have to have a ramp to the house and a ramp to the van or they won’t deliver the chair,” Newkirk said. “We can’t have it.”



She explained that Greg was injured a few years back in an accident at Bradford Electronics, a now-defunct business.

“He crushed both of his feet,” Nancy Newkirk said. After that, he worked as an assistant manager at Wal-Mart until his disease progressed to the point that he was no longer able to work.

“Because of him passing out, I can’t work,” she said, explaining his neurologist won’t permit him to be unsupervised because of the risk of injury associated with him losing consciousness. “He’s passed out 82 times in almost two years. He needs the power chair to get around on a daily basis.”

She described the scene at their rented home on Wildwood Avenue last week when the power wheelchair was there for Greg Newkirk’s use. Greg Newkirk and the couple’s 8-year-old son Cody went outside to try it out on the road — and they had a race.

“My son said ‘Dad, race me to the steps’ and he won,” Nancy Newkirk described. But then Cody went back to the house, sat down on the steps and started to cry.

“He looked at the guy who brought (the power wheelchair) and said, ‘you made my dream come true. I got to run with my dad.’”

Newkirk said that made it even harder when the man packed up the power wheelchair and left with it.

She explained that the family of three has a monthly income of just over $1,000 — nearly half of which goes for rent. She has permission from the landlord to install a ramp, but has no money to do so.

“Several people have offered low-interest loans,” she said. “I can’t do that. I don’t have the money. I don’t know what to do.

“I’ve called senators’ offices. I’ve called the Red Cross. I’ve called Life and Independence For Today,” she said. There’s waiting lists or stumbling blocks at each avenue she’s tried.

“You don’t know how embarrassed I am to ask for this help. I hate feeling like a charity case, I’m just in a desperate situation,” she said.

“I’m tough,” Newkirk added, her voice welling with emotion. She is no stranger to overcoming adversity. Her former husband was prosecuted for assaulting her; she survived a house fire; she went back to college and worked her way through, she explained. “I’m a survivor, but there comes a point ...”

RSD is a chronic pain condition believed to be the result of a dysfunction in the central or peripheral nervous systems, according to the National Institute of Neurological Disorders and Stroke.







Click Here For The Original Article Online.




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Monday, October 08, 2007

Managing chronic pain: Some things really do help


Managing chronic pain: Some things really do help



A complication from a twisted ankle kept 14-year-old Megan Valdez from being active. Treatment and therapy have lessened the pain and taught her to minimize the pain she still feels.




Their chronic pain may not go away, but they've found a way to fight through it and keep going

12:50 PM CDT on Tuesday, September 11, 2007
By NANCY CHURNIN / The Dallas Morning News
nchurnin@dallasnews.com

For the lucky ones, pain is a passing thing.

It's a problem with a solution: Take the right medication; get on the right health and fitness program; wait for the wound to heal, the fever to pass, the bone to set.

But there are many for whom the aches, the stiffness, the sensitivity will never fully go away. It can be managed and minimized, but for people with chronic pain, life is a battle that requires constant vigilance, courage and a love of life that refuses to surrender.

Helping them in their journey is the growing field of pain management. We talked with four patients and their doctors and therapists about how to put chronic pain in its place and keep it from interfering with life. They shared their hard-won knowledge, which took a couple of them decades to acquire, about how essential it is to get the proper medical care, to consider complementary alternative therapies, to exercise even when it hurts and to draw on the emotional support of family and friends through the tough times.


Here are their stories.

Bettye McQueen, 56, lymphedema

A breast cancer diagnosis in 1996 was a shock for Bettye McQueen of Grand Prairie. But even the lumpectomy, chemotherapy and radiation did not prepare her for the pain that hit a year ago.

"I don't have any movement in my left hand or my thumb at all. And the pain was so bad, I could hardly bear it."

It turned out that she had developed lymphedema, a condition in which a body area collects protein-rich fluid that causes it to swell. It can be caused by trauma injuries, such as the surgery for carpal-tunnel syndrome that Ms. McQueen had just before the pain started. Breast-cancer patients are at particular risk if they have had their lymph nodes removed, as Ms. McQueen did.

She's grateful, she says, for the Healing Arts Center at Harris Methodist Fort Worth Hospital, where she is learning the benefits of massage therapy, reflexology, lymphedema therapy and aromatherapy under the guidance of Ellen Kerr, a registered nurse and licensed massage and lymphedema therapist.

"It surprised me that the massage therapy, along with the lymphedema therapy, reduced the amount of swelling, which reduced the pain," Ms. McQueen says. "I've been able to reduce the amount of pain medication."

That's given her hope.

"I'm feeling much better, and I'm hoping to get back 100 percent. They've told me they can't make any guarantees. But along with the therapist and my faith in God, I feel I can get total use in my arm and hand again. I have the fighting spirit, and I intend to fight this."

Her advice:

Study your condition: "There are women out there who don't even know there is treatment for lymphedema. Consult with your physician on how to get relief." She suggests seeking out complementary methods, "because sometimes we can help manage pain in different ways."

Therapy is work: "You have to take on extra pain if you want to get better. I go to therapy every day, Monday through Friday. By the time I'm finished, I'm so wiped out I have to lie down and rest. But while it's painful going through it, in the evenings when I sit down to rest, the pain isn't there. I also have exercises they've given me to do at home. They're painful, but I'm resolved to do them."

Family support: "I have three nieces and a brother and friends. They have taken time off from work to take me to my treatments. You don't know how that makes you feel that someone thinks enough of you to take time off from his job to take you where you need to be."




Don Bell of Lucas has suffered from back problems for 35 years. As a young man, he compensated for spinal weakness by working out. But when he went into sales to support his wife and five children, the sitting reduced the muscles that had been keeping his back straight. He developed chronic pain syndrome and lumbar spinal stenosis – a narrowing of the back spinal canals that causes compression of the nerve roots. At age 40, Mr. Bell had the second of two back surgeries to alleviate the condition, but he was left with so much pain that he could barely get out of bed for the next two years.

"It became a depressing situation. You can't sleep good, so you don't care to go to bed," he says. "Then it's hard to face the day. The hardest part is that I had to stop being active with my kids, and I couldn't carry any of my grandchildren. That's a big part of my life I had to miss. That makes me ache."

He suffered for years until someone at his health club advised him to look into pain management. Mr. Bell had never heard of that field. Then he met Dr. Jerry W. Lewis, a pain-management specialist at Baylor Regional Medical Center at Plano, who "turned my life around," he says.

Dr. Lewis gave him injections that alleviated the nerve pain and told him he was a good candidate for a lumbar spinal-cord stimulator, which Mr. Bell had implanted in his back six months ago. The implant blocks the pain signal at the spinal cord before it reaches the brain, so the brain doesn't recognize the pain. Mr. Bell says he feels 80 percent to 90 percent better. The stimulator also helped correct his posture.

"I used to have a walker to get from room to room, and now, I can walk throughout the house," he says. "Recently, I was playing golf with my son. It's the first time I've played golf in more than 10 years


"I love it," he says. "I get to intermingle with all the teenagers. That's an experience!"

His advice:

Family helps: "I married a good woman. And all our children built homes around us. I have 13 grandchildren, and they like to come over on weekends. We're so blessed."

Take care of yourself: "I had to lose some weight and start exercising. That got me through several years. Now that I feel better, I can start exercising again, and I think I will be much better off."

Embrace technology: "My wife got me a PlayStation for Christmas, and my grandsons and I really enjoy playing while I charge my bionic implant. I always keep this unit with me. I hook it around my belt like a cellphone."




Bob Johnston first noticed that something was wrong during a trip from Oklahoma to the State Fair of Texas 28 years ago. His legs were cramping, and he struggled to walk.

He had no idea then that he had rheumatoid arthritis, a condition in which painful, widespread inflammation leads to an increased risk of heart disease and early death. And that it was going to get worse, a lot worse.

"I didn't know what it was for a couple of months," says Mr. Johnston, who now lives in Farmers Branch. "It just devastated me. Once you get in that cycle of pain, stress and fatigue, it's real hard to get out of it. If you're not seeing a good doctor who knows what he's doing, and you're not on good medication, it will drive you to despair."

He consulted a series of doctors, some more helpful than others. Among "the others" was one who prescribed liniment used for racehorses. Mr. Johnston has tried various medications over the years and is very happy with the ones prescribed by Dr. Yijun Fan, a rheumatologist at Presbyterian Hospital of Dallas.

After a stroke in 2000, he followed Dr. Fan's lifestyle advice, too. He had been a smoker, so he quit. He gave up red meat in favor of turkey and chicken. He retired, started exercising and began taking time to enjoy life. He recently returned from a cruise he and his wife took to celebrate their 25th wedding anniversary.

No doubt about it, he says, he feels better at 68 than he did at 45.

His advice:

Get help: "You've got to find a good physician and have support at home, because you're not going to always feel up to things. When you're in pain, sometimes just putting on your pants can be a struggle."

Don't give up: "The alternative isn't good. You can't just sit there and feel sorry for yourself. I'm not brave, but I feel better when I get on the treadmill about 30 minutes every other day."

It gets better: He retired six years ago, which, he says, reduced his stress level. That lifestyle change, along with giving up smoking, making more healthful food choices and exercising, has helped a lot. "I've been lucky," he says, noting that it's important not to give up, because by taking the right steps and getting the proper help and support, things can improve over time.



In March 2006, Megan Valdez twisted her ankle in gym class. But as the ankle healed, the pain got worse. She began using one, then two crutches. It hurt when air from a fan hit the ankle. Putting on her shoes and socks was excruciating.

Megan had developed complex regional pain syndrome. In the condition, diagnosed by the multidisciplinary pain-management clinic at Children's Medical Center Dallas, the nerves don't get the message that the injury has healed. Symptoms include swelling, a change in skin color, a change in nail and hair growth patterns and a cool temperature at the original injury site.

The diagnosis was a relief, the Lewisville teen says, because it meant that she would get help and had an answer for kids who teased her for making "a big deal" out of what they thought was nothing.

"I would cry a lot because it would be hurting," Megan says. "People thought I was lying. I felt sad, and I would get mad because people were not believing me."

Understanding the condition didn't make the pain itself easier to handle, however. Dr. Alan Farrow-Gillespie at Children's gave her spinal blocks and inserted an IV line for epidural injections when needed. After the hospital treatment, she struggled to do intensive physical therapy at Greater Lewisville Therapy Center for a year.

"I would always want to stop because it hurt so much. Sometimes, I was crying at physical therapy, but my physical therapist was very nice and would always make me laugh."

It's been hard, too, to accept that the pain will never fully go away. But Megan is happy because, on Aug. 20, she did something she never thought she'd do again. She ran a half-mile around her neighborhood.

"At the beginning, I thought I would always be on crutches. Now, I feel better about myself. I'll be happy when I start school and can be in athletics because I love playing volleyball."

Her advice:

Face it: At first, Megan wanted to do anything she could to avoid the pain, including exercises that made her foot hurt. But now she's glad she persevered. And she's made peace with it. "I'm OK with the pain. I can fight through it because distraction is the best thing for it."

Love that bro: It's hard when others don't believe you. That's why it means so much to have family members who understand. Megan's brother, Mark, now 10, "was very supportive" and would get things she needed when it hurt too much for her to move.

Tough love helps: On orders from the doctor and therapist, Megan's parents would touch her injured foot. "I would start crying, and they would keep doing it. My mother said it was tough love because they were trying to help me get better."







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Tuesday, October 02, 2007

What is RSD/ CRPS?

What is RSD/ CRPS?


***** Video On Original Aricle Page *****



Reported by: Eric Scheiner

Monday, Oct 1, 2007 @04:08pm EST

WILKES-BARRE-- Reflex Dystrophy Syndrome also known as Complex Regional Pain Syndrome is a neurological syndrome that impacts over 1million people in the US.

The syndrome follows 5% of all injuries. There is no known exact cause as to why, but after an accident or surgery nerves can misfire sending pain signals to the brain. RSD develops in response to an event the body regards as traumatic. Even minor injuries can sometimes result in major problems, with sometimes crippling effects.

Despite ongoing attempts to bring attention to RSD many doctors are unfamiliar with the syndrome, resulting in most patients seeing up to 5 doctors before getting the correct diagnosis.

WYOU Interactive discusses the diagnosis, treatment and the search for a cure with Dr. Avner Griver of Advanced Pain Management.





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Monday, October 01, 2007

Former soldier won't let searing pain stand in way...


POLY STUDENT’S STRUGGLE EARNS HEARST AWARD

Former soldier won't let searing pain stand in way of aerospace engineering degree

Matthew Durham won a prestigious Hearst/California State University award. Below, he’s shown during his Army service. An Army injury keeps Matthew Durham in pain, but he continues to pursue an aerospace engineering degree

By Nick Wilson

Cal Poly student Matthew Durham compares the burning sensation that he often feels in his legs to standing on a toasty blacktop pavement with bare feet.

The 25-year-old’s life was changed forever when he collapsed seven years ago during an Army drill in Maryland and suffered nerve damage to his back.

He was three-quarters of the way finished with an 11-mile run while carrying a pack weighing more than 45 pounds. Not knowing the extent of his injury, he rose and finished the exercise, crying because of the pain.

For his determination and arduous pursuit of an aerospace engineering degree, Durham recently was awarded the William Randolph Hearst and California State University Trustees’ Award for Outstanding Achievement.

Each year, one student from each of the 23 California State University campuses is granted the $3,000 scholarship based on financial need, personal hardship and merit.

Four years after his October 2000 injury, and many visits to Johns Hopkins and military hospitals, Durham was diagnosed with vascular constrictive reflex sympathetic dystrophy.

Caused by severe nerve injury to his lower back, the disorder will remain with him for the rest of his life.

“He puts up a brave front,” said his wife, Lee Ann Durham, 27, a Cal Poly psychology student. “He’s in a lot of pain and it takes a lot out of him.”

Durham, who grew up in the South County and lives in San Luis Obispo, uses a scooter and cane to get to class.

He had two wires surgically implanted in his back.

The Cal Poly student has pushed through his physical challenges and overcome a lack of focus after his parents’ divorce and his habitual truancy at Arroyo Grande High School.

“I didn’t see where I’d be in society,” he recalled. “I didn’t know where I’d go. I walked around town. I went to friends’ houses and worked on cars.”

Durham credits the Cuesta College’s Grizzly Youth Academy for helping him turn his life around.

He decided to enroll in the academy after seeing a television news story about Grizzly’s first program in 1998.

While a member of Grizzly’s second class, the program instilled in him discipline through its academic courses, community service and military-style training.

“Grizzly is not for everybody,” Durham said. “But it made me feel like I wanted to continue doing good things after graduation.”

After joining the Army and serving for five years, Durham was medically discharged in October 2004.

His service in the Army’s Honor Guard placed him near the Pentagon during the Sept. 11 terrorist attack, where he was within feet of the airplane’s wreckage.

And he vividly recalls the ceremonies that he participated in at Arlington National Cemetery, where he was deeply moved by the more than 300,000 graves of veterans from every American war.

“There is no doubt in my mind I’d be serving if it weren’t for the injury,” he said.

One of Durham’s most active involvements at Cal Poly is in the student organizations PolySat and CubeSat, which design and build small satellites and the pods that carry them.

“One of the key things you need is passion and interest, and Matthew demonstrated early on a willingness to learn,” said Lori Brooks, Cal Poly graduate student and a satellite program leader.





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