Monthly Archives: October 2008

CLUB — RSDS and Fibromyalgia Survivors Support Group

CLUB — RSDS and Fibromyalgia Survivors Support Group


RSDS and Fibromyalgia Survivors Support Group

The RSDS and Fibromyalgia Survivors Support Group Club met Sept. 26 at St. Mary’s Hospital in Streator. Club leader Bea Danko started the meeting with a request to spend five minutes each day to try to smile. She brought a sign her husband, Andy, hung in the room. It said one word in bright colors, smile. Danko added “You have RSD or fibromyalgia, it does not have you.”

The other topic of the meeting was hope. Most members wear a dove pin that symbolizes hope. Danko reminded members how important it is to hope for a better tomorrow.

Two visitors attended the meeting. Stephanie, a 21-year-old college student, and Maggie, 12, who was diagnosed within the last year. Stephanie was diagnosed at age 17. The RSD started in one leg and spread to her other leg and one of her arms. Maggie’s RSD is in her foot and cannot bear weight on it. She counts on her parents and siblings for support.

One member, Marcia Amell, a fibromyalgia sufferer, praised both girls for their will to get up each day and live their lives, even though they are hurting. She said some sufferers of these illnesses three times their ages do not always show the strength. Vivian Umphress, an RSD sufferer, said, “I may have RSD, but I refuse to let it take my life. I will not give into the pain.”

She and the rest of the group are there for one another. Meetings help each person differently. Many sufferers read an article last month about Senate Bill 1861, The RSD Education Act. Danko is the advocate and Sen. Gary Dahl, R-Granville, is the sponsor for the bill.

With the help of the group and individuals who contacted senators, 12 senators now support the bill. With the help of this bill, doctors in Illinois will be educated on how to diagnose and treat RSD.

The next meeting will be from 3 to 5 p.m. Friday, Oct. 24, at St. Mary’s Hospital. The group will celebrate Halloween. It will be the last meeting for the year. Anyone who has RSD or fibromyalgia can attend any of the confidential meetings.


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ARREST HAS LINGERING EFFECTS


Former North Point detective Matthew Ackley, his left arm dangling at his side, holds one of two awards
he received from the Baltimore County Police Department at a ceremony on Oct. 7.


ARREST HAS LINGERING EFFECTS

Detective has lost use of left arm
by Heather Perlberg

Former police detective Matthew Ackley dislocated his thumb while making an arrest last year. As a result of complications from the injury, his career is over and his left arm is useless.

Ackley was a member of the Baltimore County Police Department for nearly 10 years, all of it at the North Point Precinct. He was on the Community Drug and Violence Interdiction Team, which now operates under a centralized narcotics unit.

Ackley’s career in the department ended officially on Tuesday, when he was retired due to a disability he developed from the injury he sustained in the line of duty.

The Pennsylvania native’s life was turned upside down after what appeared to be a mild injury progressed to a rare, debilitating condition.

On Aug. 3, 2007, Ackley and Det. Robert Lockwood watched a drug deal take place outside a Four Seasons Court apartment building, said Capt. Kate Meeks-Hall, the North Point Precinct commander.

When the two detectives attempted to make an arrest, one of the men involved in the deal reached for a paper bag with a loaded gun inside. The detectives wrestled the man to the ground and Ackley dislocated his thumb in the process.

“[The dealer] was going to shoot my guys, and they did what they had to do,” Meeks-Hall said. “[Ackley] lost his job because of it.”

Though the life of Terrence A. Miles, 27, of Akin Circle in Chase, changed when he was slammed with 13 different charges and sentenced to 20 years in prison without parole, so did Ackley’s.

From his injury, or the resulting surgery, the detective developed Chronic Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), a horribly painful and progressive neurological condition that can affect skin, muscles, joints and bones. The condition is characterized by severe burning pain, pathological changes in bones and skin, excessive sweating, swelling, and extreme sensitivity to touch, according to the National Institutes of Health.

The pain and swelling has spread up Ackley’s left arm, rendering it useless.

“I throw up four to five times a day [from the pain]. I can’t sleep. My left arm is limp because I can’t lift it or bend it,” Ackley said.



His family has made many changes.

“I have three young children. I haven’t been able to pick up my youngest son. It’s heartbreaking,” Ackley said. “My hand is about four times the normal size of a hand.”

Ackley’s wife, Lauren, helps him dress, cuts his food and is attending nursing school so she can provide their family with more income. Ackley goes to physical therapy instead of work, and his parents often drive an hour to his house in Stewartstown, Pa., so they can help him take care of his children. He sleeps sitting upright in a chair, with his arm draped over the side on a pillow. Ackley said he spends little time in public, for fear that someone or something will brush against his hand and trigger even more pain.

“I keep every day hoping this will go away. I miss my job more than anything else in this world,” he said.

Ackley received two awards from the Baltimore County Police Department at a ceremony on Oct. 7: a commendation and a Purple Heart for the incident that cost him the use of his hand. He said receiving the award was especially difficult for him because he knew it was the last thing he would do as a police officer, the last time he would be called “Detective Ackley.”

The now former detective said one of his proudest moments was being sworn in as a police officer, and that he would not change his decision to become one.

“I was proud to serve the people of Dundalk. And I feel like I did my best and helped lots of people’s lives,” Ackley said.



Fellow officers and other members of the department have been supportive, Ackley said. Detectives Sekou Hinton and Scott Kilpatrick organized a fundraiser that yielded $10,000 for Ackley’s medical bills.

The former detective, who celebrated his 33rd birthday on Saturday, said the fundraiser meant more than his fellow officers will ever know.

Ackley has undergone several medical treatments to prevent the CRPS from getting worse. He said he has used some of his savings to get the best possible treatment, including sessions in a hypobaric chamber that stopped the condition from spreading to his right hand.

Meeks-Hall said the department is upset about Ackley’s injury.

“He was a great detective in the unit, a good dad, husband and friend to everybody. He’s a nice guy. It’s really tragic. We wish him very well in his future,” said Meeks-Hall, who is retiring herself at the end of the month.

Though Ackley said this is not where he ever imagined he would be, he will continue to be hopeful.

“No matter what, I’m not going to give up. I am going to do what I need to get better,” he said. “If one day I can move my fingers and wrist, I’ll be very proud. Right now I just sit on the couch and try to make them move.”



Earlier this week, Ackley was still waiting to hear how much he would receive for disability compensation.











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Dawn Marie’s WrestlersRescue helps grapplers, sister-in-law


Dawn Marie’s WrestlersRescue helps grapplers, sister-in-law

By KENAI ANDREWS – SLAM! Wrestling

Former WWE and ECW Diva Dawn Marie recently hosted WrestlersRescue, a two-part benefit convention and gala dinner to help raise money for the health care costs of retired professional wrestlers and for sister-in-law Carrie Deussing, who is recovering from successful ketamine surgery. SLAM! Wrestling spoke to Deussing about the event and her amazing recovery and it is clear that thanks to the generosity of wrestling fans everywhere — including SLAM! Wrestling readers — she is on the previously unthinkable road to a complete recovery.

The event took place September 14 at the Radisson Hotel in Piscataway, New Jersey. According to organizers, at least 150 people attended the dinner. Dollar figures with respect to the amount raised at the event were unavailable.

An early morning fire evacuation threatened to derail the festivities but only managed to slightly delay the convention portion, where fans could buy and have collectibles signed by their favorite entertainment personalities.

Notable wrestling alumni included Terri Runnels, Tammy Sytch, Balls Mahoney, Mick Foley, Captain Lou Albano, Torrie Wilson, JJ Dillon, “Superfly” Jimmy Snuka, Ashley Massaro, Nikolai Volkoff, The Iron Sheik, Missy Hyatt, Greg “The Hammer” Valentine, and the Sandman. Several radio media outlets were also present.

For Deussing, it was time to catch up with family and friends, including her favorite wrestlers Albano, Sheik, and Volkoff, who remains a close friend and supporter of her fight with Reflex Sympathetic Dystrophy (RSD), as previously reported by SLAM! Wrestling.

“Nikolai Volkoff recognized me right away, even when everyone was evacuated when I got there, and he wanted to know all about how the treatment went,” explained Deussing. “He had been telling about this doctor in Baltimore that he uses. He wanted me to go see him. He had me write the disease down on the business card so he could talk to his doctor about it. He had given me his information back at the Wizard convention around April or May.”

On July 17 Deussing was medically induced into a coma with a large amount of Ketamine — a horse tranquilizer — injected into her system afterwards. She was then slowly revived to help her nervous system “reboot” like a computer. Doctors pegged her success rate for the procedure at 50 per cent.

Deussing’s recuperative progress has been amazing to behold. She left Mexico after only 12 days of hospital stay. Where physical contact, driving and walking were once chronically painful experiences, she now performs them virtually pain free and with the vitality of earlier times.


Carrie and Dawn Marie with radio hosts Josh and KB at the Wrestlers Rescue dinner.

“She’s coming along great, about 95%, which is awesome,” said a happy but exhausted Dawn Marie. “She is more herself again and has a big smile on her face.”

Deussing is now on a six-month timetable to full health. Physical therapy including incremental exercise, periodic ketamine booster shots and a minor operation to relieve the remaining 5% of pain in the back are the only bumps left to a full recovery.

The therapy will help to re-strengthen her body slowly and methodically. It is the longest part of the six-month program. Deussing has been advised to take things easy to avoid any possible retriggering of the nerve disorder.

“Being stress free is so key for the recovery and the treatment,” Deussing added. “My family was really supportive of me. I later found out I was the 13th patient to have the treatment in Mexico.

“I knew it was going to work. Having a positive outlook is also key. If you go in with a bad attitude like, ‘Oh, this isn’t going to work,’ or, ‘I’m going to be sick all my life,’ then it just isn’t going to work.”

She felt so good after the surgery she made the mistake of resuming her normal schedule too quickly, subsequently experiencing nausea and vomiting. “My body was saying, ‘Slow down.’ I couldn’t just jump back into my life,” she said.

She has some advice for others who may be facing the disorder: Look on the bright side.

“You have to stay positive. Don’t give up! I’ve kept in contact with three patients who will be going to Mexico and patients who are going to Germany. You need to stay positive. If you have a crappy outlook or a crappy attitude, you are going to do crappy, that’s the bottom line. You can’t leave everything up to the medicine.”


Carrie and her husband Arthur.

Deussing also recommends to get checked out as soon as possible. “I was released on July 20th, one year to the date when my symptoms first started,” she noted. “Most people wait years before they are diagnosed properly and then it takes a long time to get the treatment. Once I got my diagnosis confirmed in September, I just fought as I hard as I could to get the treatment as fast as I could. Because I was on waiting list for Germany and if I didn’t go to Mexico, I’d still be on the waiting list for Germany. I think that helped me to treat this disease as quickly as possible.”

She has raised approximately $40,000 so far, which covers the treatment in Mexico but still leaves her short for her traveling and post-medicine expenses. She is scheduled for at least three booster sessions which average $1,000 a session. “I’m hoping my insurance company will cover my physical therapy,” she said.

Donations are still being welcomed to cover the complete costs of the experience.

“My goal is to return to work in January of next year,” Deussing said confidently. “I don’t know if the doctors agree with that goal. They might think it’s a bit too aggressive. We’ll just have to see how everything goes.

“I’m walking, I’m driving. I vacuumed today,” she laughed. “Just a little bit each day.”

EDITOR’S NOTE: If you would like to help Carrie Deussing, tax-deductible donations can be made to: The Carrie Deussing RSD Foundation, Commerce Bank, 601 College Drive, Blackwood, NJ, 08012. Donations can also be made through the Carrie Deussing RSD Foundation website.

RELATED LINKS

  • June 25, 2008: Dawn Marie battles to help ailing sister-in-law
  • November 16, 2007: Dawn Marie & Francine heading down different paths
  • April 10, 2002: Dawn Marie lives and learns
  • www.dawnmarieonline.com
  • Carrie Deussing’s MySpace
  • Dawn Marie’s MySpace

  • Click Here For The Original Article Online.

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    Mysterious Syndrome Causes Chronic Pain

    (Click The Link At The Bottom of This Article To See The Video On the Source Article Page.)

    Mysterious Syndrome Causes Chronic Pain

    POSTED: 6:07 pm EDT September 24, 2008


    According to researchers with the Mayo Clinic, nearly half of all Americans seek medical help for chronic pain every year. Many find relief but some of those who don’t are diagnosed with a complex disorder that leaves them imprisoned by their pain.”Sometimes I just feel like I’m waiting for my life to begin again,” said 29-year old Elizabeth Weiss.Weiss began suffering from pain after a relatively mild accident in 2003.

    “It’s a sharp burning, like someone is applying a blow torch to my skin,” she said.For years, medical experts couldn’t explain what was happening. Then Weiss met Dr. Nicholas Suite who diagnosed her with a complex disorder that goes by several names, including Reflex Sympathetic Dystrophy, or RSD.”Although the precise cause is unknown, RSD often occurs after an injury or insult that leaves part of the body immobilized,” said Suite.Medical experts believe the sympathetic nervous system goes haywire, scrambling the body’s pain signals.”The key with this condition is to identify it early and start with interventions such as physical therapy to hopefully interrupt the pain cycle,” Suite said. “The earlier we diagnose and address it, the better the chances of reversing RSD,” he added.For Weiss, even daily doses of pain medication have brought little relief. She’s now considering a risky treatment done outside the U.S. where patients are placed in drug-induced coma in hopes of disconnecting the faulty pain signals.”I just want to get better and help other people with RSD,” she said.RSD is also known as Complex Regional Pain Syndrome or CRPS.To find out more visit the following Web sites:

    American RSDHope
    Hope For Elizabeth
    American Pain Society

    Novel Imaging Study of Pain Sheds Light on Mystery Condition


    Novel Imaging Study of Pain Sheds Light on Mystery Condition

    McLean Hospital and Children’s Hospital Boston research may lead to new therapeutic approaches to chronic pain

    FOR IMMEDIATE RELEASE:
    July 23, 2008

    CONTACT:
    Adriana Bobinchock
    McLean Hospital
    617.855.2110

    Erin McColgan
    Children’s Hospital Boston
    617.919.3110

    Belmont, MA – The first-ever functional brain imaging study of chronic pain conducted in children, done by researchers at Harvard-affiliated McLean Hospital and Children’s Hospital Boston, has shed new light on a mysterious condition known as complex regional pain syndrome (CRPS) and offers hope for a better understanding of the disorder in both children and adults. The study, supported by the Mayday Fund of New York, is the result of a joint effort between researchers at Children’s who treated the patients in the study and the P.A.I.N. (Pain & Analgesia Imaging and Neuroscience) group at McLean, who conducted the imaging tests.

    “Studying pain in children offers us insights into how the brain may cure itself because the young brain is so adaptable relative to the adult brain,” says David Borsook, MD, PhD, director of the P.A.I.N. group at McLean, and senior author of the study published in the current issue of Brain (abstract). “This may offer very important insights into the development of new therapeutic approaches to chronic pain-a condition that more than 50 million Americans suffer from with relatively little in terms of highly effective therapies.”

    CPRS is a disorder of the peripheral nervous system characterized by severe pain, hypersensitivity to stimuli, poor circulation, abnormal sweating, muscle atrophy, joint problems, movement disorders and cognitive changes, among other symptoms.

    “This is a significant pain problem that often leaves individuals incapacitated, wheel chair-bound and limited in their physical abilities,” notes Borsook, who added that in the pediatric population, girls are affected more frequently than boys. “It can be difficult to diagnose and without proper treatment children and adults living with CPRS live in absolute agony.”

    Typically, the condition stems from an initial injury, usually the hands or feet, and spreads sometimes to the opposite limb or side of the body, even to the entire body. It is more common in women and is now being seen in some girls after they have suffered sports injuries.

    “CRPS is a frightening illness because it can develop as a result of a seemingly trivial injury,” says Borsook. “For example, a 14-year-old girl can sprain an ankle during a basketball game, but what seems like a common and easily treatable injury can develop in to CRPS, causing extreme pain throughout her body.”

    In their novel study, the McLean and Children’s researchers developed the first model of the illness that allows them to examine the efficacy of interventional treatments.”

    “The central nervous system imaging of pain in pediatric patients is a nascent development within the increasingly productive field of functional MRI (fMRI),” explains Alyssa Lebel, MD, senior associate in Pain Medicine and Neurology at Children’s and first author on the paper. “This non-invasive technique provides a unique window into regions of the brain actively engaged in pain transmission and modulation. Contrast to adult, pediatric patients are still developing these regions, along with their connections, and may show fMRI patterns of activation in response to pain that differ from adults. Additionally, children often recover symptomatically from painful disorders, such as CRPS.”

    Lebel notes that the research team’s data provides early information about provocative changes in central nervous system (CNS) circuitry in symptomatic and recovered patients with CRPS, as well as demonstrates that the technique is tolerable and acceptable to children with neuropathic pain.

    “We will continue to study pediatric patients with CRPS and with other painful disorders, such as headache, to begin to define the pediatric CNS circuitry of acute and chronic pain,” says Lebel. “Such information may eventually allow current and novel therapeutic interventions to target the CNS processes ultimately responsible for the complex sensory and emotional experience of pediatric pain.”

    In children, the symptoms often appear to resolve in time, while in adults resolution is less common. Treatment is generally limited to pain medications and physical therapy. Because the symptoms in children frequently reverse, the researchers decided to image the brains of children with the condition both while symptoms were present and then after the symptoms had gone away-a comparison that cannot be done in adults.

    “Our team took advantage of the opportunity to look at children in the pain state and the non-pain state,” said Borsook, who is co-director of the P.A.I.N. Group of the Department of Radiology at Children’s with Lino Becerra, PhD. “We were trying to define what happens to a changing brain as it adapts over time in those afflicted with this syndrome.” A key advantage of imaging children is that they do not usually have other illnesses and are not typically on other medications that might influence the findings, he adds.

    “This paper is not just a first for kids, but also has implications for understanding the adult condition,” he said.

    The imaging studies revealed some unexpected findings. Most importantly, the images taken in the non-pain state showed that brain recovery was not complete.

    “The brain changes seen during the pain state don�t disappear during the early non-pain state. As a result, subsequent injuries could rekindle the condition or other problems could occur later,” Borsook warns.

    Further studies will seek to evaluate how long it takes brains to recover fully and determine the efficacy of treatments.

    “Our results suggest significant changes in CNS circuitry in pediatric patients with CRPS may outlast the signs and symptoms,” report the authors. They conclude that even with a more rapid resolution of pain in children, the effect of the nerve damage and other changes that occur in CRPS at a time of development of brain connections may have prolonged effects upon brain circuitry. This could impact upon pain processing in these individuals later in life.

    This initial research has been pivotal in establishing a newly formed program P.A.I.N. Group at Children’s using fMRI to evaluate pediatric pain disorders; the program has been supported by the hospital and the Departments of Radiology and Anesthesiology.

    “It brings new research to understanding acute and chronic pain disorders in childhood,” says Borsook. “Furthermore, it integrates programs that are already at the forefront of pediatric pain treatment (such as the newly established Mayo Pediatric Pain Rehabilitation Program at Children’s) with modern neuroimaging facilities recently established at Children’s Waltham.”

    McLean Hospital is the largest psychiatric clinical care, teaching and research facility of Harvard Medical School, an affiliate of Massachusetts General Hospital and a member of Partners HealthCare. For more information about McLean Hospital, visit www.mclean.harvard.edu.

    Children’s Hospital Boston is home to the world’s largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, 11 members of the Institute of Medicine and 12 members of the Howard Hughes Medical Institute comprise Children’s research community. Founded as a 20-bed hospital for children, Children’s Hospital Boston today is a 397-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children’s also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about the hospital and its research visit: www.childrenshospital.org/newsroom.

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