Monthly Archives: April 2012

Disabled woman at her ‘wit’s end’ posts YouTube video to show how she is forced to slide across her floor at home

Disabled woman at her ‘wit’s end’ posts YouTube video to show how she is forced to slide across her floor at home

Pictured above: Tracey Bennett

Published: 27 April, 2012
by JOSH LOEB

A PHYSICALLY disabled woman who has endured periods of virtual imprisonment in her own home because Westminster Council has failed to adequately house her has posted a hard-hitting video highlighting her plight on YouTube.

Tracey Bennett, 37, a former Paddington Green Primary School pupil who has lived in Westminster her entire life, has suffered from Complex Regional Pain Syndrome (CRPS) since a work-related accident six years ago left her with difficulty walking.

In the video, titled “Westminster Council’s Shame”, the former youth worker demonstrates how she moves around her flat by pushing herself with her arms and sliding on her legs across the floor.

She told the West End Extra she rarely eats hot food as she is unable to cook in her kitchen because the work units are too high, adding that she cannot use her wheelchair on the second floor, council-owned property as it is too wide to fit through doorways.

She eats food from a bowl on the floor next to the mattress where she sleeps and is reliant on the kindness of friends or family members, who bring her basic necessities.

Ms Bennett is calling on the council to rehouse her in ground-floor accommodation and said she made the video because she is at her “wit’s end”.

The council said that since 2008 Ms Bennett had been on a list allowing her to bid for a housing transfer when new properties became available.

A spokeswoman said they were working closely with her to try and improve her situation, adding that her care package had been doubled after it became clear last week that her condition had worsened owing to an arm injury.

Recounting one period when she said she was left housebound while a new lift was fitted, Ms Bennett said: “I’ve never committed any crime but I was kept prisoner here. I know there are people worse off than me, but I have been trying for three years to get rehoused and I haven’t got anywhere.”

There is a chronic shortage of council housing in Westminster, many homes having been hived off under the right-to-buy scheme.

Councillor Rachael Robathan, Westminster Council’s cabinet member for adults and health, said: “We have made every effort to tackle this situation since Ms Bennett first made us aware of her injury.

“The council agreed to double Ms Bennett’s care package with additional help following a visit from a care manager.

“Ms Bennett first applied to our housing options service in 2008 and is able to bid on properties that become available. The position is that she has yet to place a bid.

“This is a very difficult case and we want to make sure that we do everything we can to help Ms Bennett. I am pleased that the care team responded immediately when they were notified of her injury and I hope that the extra measures we have put in place in response to this will help her.

“We will continue to work closely with her to make sure that the services she is offered reflect her current needs following her accident. Our housing options team will be carrying out a further medical assessment based on the new information we now have.”

Click here for the original article online.

Click here to watch the video on YouTube.com

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People: Disabled woman forced to ‘live like a dog’ in Little Venice flat

Disabled woman forced to ‘live like a dog’ in Little Venice flat

Ben Bloom , ReporterThursday, April 26, 2012
4:40 PM

A disabled ex-youth worker from Little Venice says she is living “like a dog” after being forced to drag herself around the floor of her unmodified flat which she has been unable to leave for 10 days.

Tracey Bennett, 37, lives in a third-floor council flat in John Aird Court, which has not been adapted to allow her to use a wheelchair indoors.

The complex regional pain syndrome (CRPS) sufferer says when her pain is at its worst, she is unable to use her crutches and is forced to drag herself around the floor.

Having broken her arm four times on the steps leading up to her flat, Ms Bennett says she feels trapped indoors and has urged Westminster Council to find her a suitable ground floor property.

“It’s morally wrong,” she said. “I’m nearly 40 and I’m dragging myself on the floor like a dog.

“If I had a dog and didn’t take it out for five days the RSPCA would come along, fine me and ban me from having a dog for life. But I’m being failed by everybody.”

Ms Bennett had lived in the flat for six years when she suffered a trampolining accident in 2006.

She was diagnosed with the rare condition CRPS, which makes her legs and arms difficult to use. She last broke her arm on the stairs in February but says there are times when she is unable to use her crutches even when she is not injured.

“It is worse when I have a broken arm but I have been on the floor for days at a time for the past three years and the council knows all about that,” she said.

“I have had to sleep on the floor on and off for three years so it’s become the norm. If I could get a house on the ground floor my life would change dramatically.”

Westminster’s occupational health department agreed that she should be urgently rehoused in a ground floor flat in 2007.

But Ms Bennett claims despite submitting 10 housing applications since then, the council always says it has not received all the relevant documentation.

Westminster health boss Cllr Rachael Robathan said the council has made “every effort” to help Ms Bennett since becoming aware of her latest broken arm and has agreed to double her care time from one hour a day to two hours.

“Ms Bennett first applied to our housing options service in 2008 and is able to bid on properties which become available,” she said. “The position is that she has yet to place a bid.

“This is a very difficult case and we want to make sure that we do everything we can to help Ms Bennett.”

She added that Westminster’s housing options team will carry out a further medical assessment.

Click here for the original article online.

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Organizations: Please consider supporting the RSDSA

New video from/about the RSDSA … an organization that does a lot for people with RSDS/CRPS and a lot of amazing work towards education, research and finding a cure.

Click here to watch the video on YouTube.

Click here to watch the video on YouTube.

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Calmare: Philly Dad and Ohio Mom end their children’s RSD pain with Calmare

Philly Dad and Ohio Mom end their children’s RSD pain with Calmare

Posted on March 22, 2012 | 1 Comment

March 26, 2012

During the past month, we’ve met some remarkable patients from around the U.S. who have come here to Rutherford for Calmare Therapy. The past few years for the Bailor and Schmidt families have been fraught with worry, frustration and medical bills. Their children contracted reflex sympathetic dystrophy (RSD) and their parents dedicated every available moment to finding a solution to end their children’s chronic pain.

Words cannot describe how gratifying and heartwarming it has been to see these children respond so positively to Calmare treatment. These wonderful kids went back home pain free (0 pain level)  and quickly stepped back into the lives they had left behind due to chronic RSD pain. Thank you to both families who so generously shared their personal stories with us.  They did so hoping that their stories would reach other parents in the same situation.

Click here for the original article online.

Click here for a video from this article.

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Scientific Abstract: Psychological Factors in Complex Regional Pain Syndrome

Psychological Factors in Complex Regional Pain Syndrome
2006, Vol. 2, No. 3 , Pages 41-45
Tage Orenius

Orton Orthopedic Hospital, Helsinki, Finland

 

ABSTRACT

Chronic pain disability is a challenging condition in which biological, psychological, and social factors dynamically interact with each other. Especially the treatment and rehabilitation of patients with CRPS put demands on techniques as well as on the rehabilitation framework. The general recommendation is a multidisciplinary team approach for CRPS patients. The psychological contribution should comprise a thorough assessment, followed by a psychological pain management component including relaxation/biofeedback training, cognitive interventions, behavioral interventions and extended cognitive-behavioral therapy.

Approximately one-half to two-third of all patients diagnosed with chronic pain manifest various levels of psychological distress. Still, there is insufficient research-based information about the role of psychological factors in the etiology, prognosis and clinical picture of CRPS.

Studies reveal that patients for whom CRPS-1 developed after radial forearm fracture seem to have neither a unique psychological pattern nor display more symptoms of depression than those who fully recover. In fact, CRPS patients seem to have common psychological features and show the same amount of anxiety and depression as patients with Fibromyalgia and Repetitive Strain Injury. Physical therapy in combination with autogenic relaxation training seems to lead to a significant improvement in limb temperature compared to physical therapy alone.

Further research is needed to improve theory about psychological factors in CRPS. At present, there seems to be no published study specifically evaluating psychological factors in the etiology, clinical picture or prognosis of CRPS. Comparative controlled studies should be made to create practical clinical treatment methods for the patients. Probable psychological topics of importance in understanding CRPS are, among other distress factors: affect regulation and particularly alexithymia, fear-avoidance and catastrophising.

Read More: http://informahealthcare.com/doi/abs/10.3109/J426v02n03_09

Click here for the original article online.

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Alternative Treatments: Hemp Oil

From the editor:  We came across this video last week and wanted to share it with the larger RSD community.  Please, if you’d like, comment below if you know anything about Hemp Oil and/or have tried it yourself.  If you’d like to remain private, please email me directly as we are attempting to collect information to see if this is a viable alternative treatment for those suffering from RSDS/CRPS.

Thank you.

Click HERE to watch the video on YouTube.

Click HERE to watch the video on YouTube.

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Canada: Sufferers of chronic pain and the government’s war on OxyContin

Sufferers of chronic pain and the government’s war on OxyContin

Our understanding of severe pain is inadequate

by Elizabeth MacCallum on Thursday, March 15, 2012 1:48pm

The latest opium war

Giulio Sarchiola/Contrasto/Redux

“Chronic pain is even worse to live with than lung, cardiac or liver disease. Bad chronic pain is connected with the worst quality of life. People don’t realize that it is a disease on its own, not just a symptom.”

That’s a pain warrior talking, a warrior who has been in the battle against pain for over 25 years. Dr. Mary Lynch’s new patients wait more than two years to see her because of her renown as an unusually empathetic physician who understands the complexities of living with pain, day in, day out, year after year.

In 2010, she co-authored a brief to the parliamentary committee on palliative and compassionate care, as did Margaret Somerville, an ethicist at McGill University, who stated a now-classic credo for pain-management workers: “People in pain have a right to fully adequate pain relief treatment. Physicians should not fear that giving adequate pain relief treatment is unethical or illegal; in fact, they should fear the ethical and legal consequences of not doing so.”

Ethical? Legal? These are not concerns that should afflict a fight to ease people’s suffering, yet they are. In pain treatment, there is an elephant in the room as old, if not older, than the dreaded opium dens of China’s dissipated Qing Dynasty.

The most effective drugs today for severe and chronic pain are based on opium, or chemicals with the same structure, all potentially addictive. So, on the one hand, you have pain specialists like Lynch, a past president of the Canadian Pain Society and a professor at the Queen Elizabeth II Health Sciences Centre at Dalhousie University in Halifax, on the front lines with patients in pain, who talks with fervour of “fulfilling” the United Nations Universal Declaration of Human Rights; on the other hand, you have doctors who specialize in addiction who say prescribing opioids can contravene a doctor’s duty to do no harm by creating addicts. Some doctors steadfastly refuse to prescribe opioids, even when their patients are in severe pain. That, in its starkest terms, is why we now have a modern-day opium war.

“The OxyContin disaster.” “Ground Zero for opioid use and abuse in Canada” “The country needs a national strategy to tackle the widespread abuse of painkillers.”

For evidence of the war, look no further than the rhetoric trumpeted in the media in the immediate aftermath of Ontario’s announcement in mid-February that it would no longer pay for a leading brand of potent painkillers. As of March 1, the province delisted OxyContin and its replacement OxyNeo. Any doctor who wants to prescribe the long-acting oxycodone to new patients will now need to prove another attempt at long-acting pain treatment has failed.

Nova Scotia is following suit, limiting the drug to use for cancer-related pain and palliative care. Prince Edward Island already had strict criteria for OxyContin prescriptions and will not pay for the new, safer replacement.

The war on this drug—no other opioid is being delisted—is driven by what editorialists describe as “an epidemic of opioid addiction,” fuelled by stories about pharmacy break-ins, inquests into prescription-drug deaths and tragic tales of lives undone. The focus of it all is the prevailing connection of opioids to drug addicts and accidental deaths, with little consideration for their proper need and use as painkillers.

“The popular scare comes from the deaths,” says Dr. Peter Selby, clinical director of the addictions programs at the Centre for Addiction and Mental Health in Toronto. “My personal opinion about OxyContin is that it was designed to be addictive. Thirty-five per cent of the drug is immediate release for a fast effect.”

Not all deaths involving OxyContin are accidental. According to Lynch, doctors who want to ban or severely restrict medical use of opioids ignore that “a significant number who died from overdoses, from 15 to 25 per cent, was not accidental but suicides because people are in such bad pain they want to kill themselves. Even with drugs, pain patients often don’t get the care they need. In these drug deaths, only one side of the story is told.”

The issue is complicated and multi-faceted, and hugely susceptible to easy, headline-grabbing accusations. For starters, the best drugs for pain—codeine, morphine, Demerol, ratio-Oxycocet, for example—are all addictive by nature. Before prescribing opioids, doctors are obliged to make sure their patients are not at high risk for addiction. Beyond what doctors prescribe, however, the reality is that OxyContin has replaced crack and heroin as one of the most popular street drugs. When the police manage to clean up this market, another substance will take over as the drug du jour.

Meanwhile, burglaries in pharmacies have become so frequent that many drugstores haven’t been keeping OxyContin in stock, ordering it in for each prescription. Not only do pharmacists fear violent, irrational thieves, but insurance companies can charge over $10,000 a month even if a pharmacy did as little as $1,000 worth of business in opioids. And since it has become an increasingly popular drug—more than 20 per cent of North Americans now report having suffered from chronic pain—there is lots left in family medicine cupboards.

“These days kids have ‘pharming’ parties,” says Dr. Roman Jovey, medical director of CPM, Centres for Pain Management. “They throw all the pills they can find in a bowl, take a handful and down it with alcohol. They see their parents take them, so they underestimate their strength. All youth will experiment with drugs but now there is a blurring of the margins of prescription drugs and illegal street drugs.”

Like most wars, ideology and money are key elements, and innocent citizens, particularly those disabled by pain, are the victims in the new opium wars. Jovey talks about a “societal historical fear of opioid addiction,” a sort of love-hate relationship. “Addiction to opioids seems to occupy a special obsession when alcohol and smoking are even more harmful,” he says.

But abuse is a particularly apt term when discussing oxycodone addiction. “When oxycodone came out, we never even thought of crushing it and snorting it or injecting it. The reason I can still sleep at night when I prescribe OxyContin is that street use is so relatively small compared with therapeutic use,” says Jovey.

Purdue Pharma LP first marketed a time-release form of oxycodone called OxyContin in 1996. Its strength is that it gradually releases its painkilling medicine. The aim is to keep pain at a low level all the time, to avoid the spikes of pain requiring higher doses of fast-acting pills.

Trouble soon followed OxyContin. In 2001, West Virginia claimed Purdue Pharma violated that state’s Consumer Credit Protection Act, antitrust statutes, and created a public nuisance because its aggressive marketing led to “excessive, inappropriate and unnecessary prescriptions.” Purdue settled three years later for US$10 million. In 2007, it paid US$19.5 million to 26 states and the District of Columbia to end their complaints. Also that year, Purdue paid more than US$600 million and pleaded guilty in federal court to resolve criminal and civil liabilities “in connection with a long-term illegal scheme to promote, market and sell OxyContin,” the U.S. Food and Drug Administration announced. While Purdue Pharma Canada is associated with, but independent from, the American company, the impact has been felt here, too.

In a rare interview, pharmacologist Cornelia Hentzsch, head of Purdue Pharma Canada, explained OxyContin was actually developed “as an alternative to MS Contin, which had morphine as its main component.”

Many people cannot tolerate morphine but can take other opioid drugs with fewer side effects. Feedback from doctors and patients indicated the need for a combination of fast- and slow-acting drugs in one pill. Pain-management practice accepts that a strong dose of painkiller as soon as possible reduces the amount of drug required in the long run.

“In its warnings, the publicity inadvertently gave information on how to abuse it,” said Hentzsch. “We’re worried we may have to take it off the market when it is such an effective pain control drug.”

After the American scandals, Pharma’s Canadian salespeople were instructed not to promote OxyContin, but rather just point out to doctors the drug’s dangers and how to detect potential addicts.

“People think I’m crazy,” says Hentzsch. “They see me going around doing a negative sales campaign. But I’m shocked by the lack of monitoring of patients. We’re trying to increase controls through professional associations. I’ve been to [Health Canada’s] Office of Controlled Substances asking for limitations on the numbers of high-dose tablets. We’ve been constantly searching. You don’t solve the problem of substance abuse by removing one particular substance. It is something deeply ingrained in our society.”

Ironically, the provinces have taken matters in hand, just when OxyNeo, impossible to snort, inhale or inject, makes a much safer drug available.

Fear of addiction may be deeply ingrained, but our understanding of severe pain and its consequences remains inadequate, and much of it recent. Pain begins with birth for mother and child. Doctors circumcised babies with no analgesic at all, apparently thinking they didn’t feel pain despite their screams. Premature babies who spent months in hospital before even coming home were put through hundreds of procedures, even excruciating ones like spinal punctures, without anaesthetics. Fortunately, pediatricians now know better, but only within the last 20 years.

Many adults still have trouble getting pain treatment—even before the delisting. One of Jovey’s patients was turned down by more than 20 doctors when looking for a new general practitioner to replace a retired one. It takes patience, extra work, and even some courage to take on a patient with chronic pain: in addition to the mountains of paperwork behind prescribing opioids, and the omnipresent fear of onerous inspection by the provincial colleges of physicians and surgeons, there’s just too much time required to deal with the complicated issues of chronic pain which—even on a good day—cannot be cured, only managed.

With many family doctors reluctant to deal with patients requiring long-term opioid use, the inevitable result is a small number of doctors come to be known as good “pain” doctors. Then, anti-opioid lobbyists criticize them for either over-prescribing or prescribing carelessly. In fact, most pain specialists say the biggest problem in Canada for pain patients is the under-prescribing of drugs.

“I have a whole caseload of nerve-damaged patients. Most of them are in terrible pain and they aren’t properly medicated,” laments therapist Carol Moore of Toronto. She specializes in patients who have gone through severe neurological trauma, like car accidents. Most of them live reduced lives with permanent brain damage and physical handicaps, and have gone from being healthy one day, to being in a wheelchair or worse the next.

Moore is an old pro but she loses her professional veneer when the subject of pain comes up. “They’re only given Tylenol 3 and they are suffering!” One of Moore’s patients suffers from a neurological disorder caused by a minor, low-impact collision when she pressed back her thumb on the driver’s wheel. The result has been complex regional pain syndrome; her entire arm, up to her neck, is in agony. From an ordinary healthy existence, her life has changed irrevocably. She needs to take so many opioid medications to deal with the pain that she once didn’t realize a fire alarm was screaming above her head in her own room. She didn’t even realize she should vacate her apartment immediately. As a result, she has had to accept 24-hour care, which costs her dearly. In addition to the medication, once a month she goes in for a nerve block, a surgical injection of steroids and anaesthetics that dulls the nerve paths in her arm. As the days of the month go by, waiting for that next stab of relief, her arm feels increasingly like it is immersed in boiling oil.

Because nerve blocks become less effective with repetition, she can’t have them too frequently. Her whole life centres around her caregivers and surviving until the next nerve block, the daily pain somewhat relieved by regular long-acting opioids, and extra, fast-acting ones for even more pain than usual. At least she has doctors who understand her need for pain control and give her more than Tylenol 3. People like her don’t get much mention in the media. The fact that the suicide rate of people suffering long-term chronic pain may be twice as high as the normal population isn’t mentioned either.

Opioids don’t get rid of chronic pain and for the most part, the medical system does not accommodate the myriad other treatments that should accompany these drugs. Nevertheless, many people find that these opioids just help them get through the day with less debilitating pain. They may be able to look after their children again, without collapsing in tears of frustration. Or they may be able to sleep through most of the night, again with the help of opioid medication, along with all the other pain-management exercises and paraphernalia.

What is clear is that the scaremongering often distorts figures and the response. It makes people in pain fear taking what can help them. It makes doctors reluctant to prescribe drugs their patients need, and it distracts attention from the real need for education in the field of pain management. The first reason people see their family doctor is because of pain. No medical school in Canada offers a specialized degree in pain management—even Dalhousie, where Mary Lynch fights on in a war where the battle lines keep changing.

 

Click here for the original article online.

 

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