By RYAN E. SMITH BLADE STAFF WRITER

 Dr. Patrick McNamara gets out of his silver minivan and hobbles a few steps, leaning heavily on a homemade wooden cane. There is pain in every awkward movement the 51-year-old makes – until he pops open the trunk and grins. “In a moment, I will no longer be handicapped,” he declares. The next thing you know, he’s zipping around the parking lot like Willy Wonka – he’s still holding the cane – using a Segway to run circles around an observer. He continues to show off inside a nearby supermarket, gliding around with ease, pushing a shopping cart, and exhibiting no trace of the nerve ailment that leaves him in severe pain most of the time. “I’m not disabled when I’m on this,” says Dr. McNamara, who has complex regional pain syndrome and retired from internal medicine three years ago. “It’s such a completely rehumanizing experience.” That’s what interests the Sylvania Township man most. Sometimes the solution is flashy and high-tech, like the Segway he uses to get around. At other times, it’s as old-school as the canes that he makes from scratch in his basement workshop. It all began when Dr. McNamara injured his back while exercising and found that he had trouble walking even a short distance due to the extreme pain. He investigated all sorts of help: scooters, wheelchairs, hiking sticks, metal canes, but each had its own problem. “The devices that you use to get around kind of mark you,” he says. Consider aluminum canes, for example. “They’re ugly, they’re cold, they’re uncomfortable,” he says. “They mark you as someone sick or disabled.” Then he tried a Segway and everything changed. When the two-wheeled device was unveiled in 2001, it was envisioned as a way to transform car-clogged cities, not as a tool for people with impaired mobility. But that hasn’t stopped Jerry Kerr, president of Disability Rights Advocates For Technology in St. Louis, from calling it “one of the greatest things ever designed for people with disabilities.” Mr. Kerr said there are thousands of people who have difficulty walking who use Segways, which move forward simply based on the user leaning in that direction. Karen A. Whalen, owner of Segway of Ohio: Toledo, says people with disabilities make up about 30 percent of her sales. (Most of the rest come from police and security companies.) “It really gives them back their lives,” she says. “They just get this huge smile.” It’s a smile that’s seen often on Dr. McNamara’s face when he talks about how the invention revolutionized his life, allowing him to go to the store or join his family for his son’s baseball games. It also keeps him at eye-level, unlike a wheelchair, which he finds painful. These days, Dr. McNamara doesn’t leave home without his Segway. He keeps it ready to go in the back of his van where, once it’s turned on, he can easily roll it down a pair of portable tracks. “The Segway is, I think, an idea whose time has come for disabled people,” Dr. McNamara says. While federal buildings under the jurisdiction of the U.S. General Services Administration allow Segway use by people with disabilities, not everyone else does, sometimes citing safety concerns. Nationally, the spotlight is on Walt Disney, which prohibits people from bringing personal Segways into its parks. Locally, it became a kind of quest for Dr. McNamara to make the city more Segway-friendly for the disabled and to raise awareness. He said he hasn’t had any trouble at private businesses and worked with the Ability Center of Greater Toledo to gain access to the Metroparks of the Toledo Area. Getting his Segway into One Government Center proved more difficult. In 2007, Dr. McNamara tried to use his Segway there and was not allowed to in an incident he called humiliating. The Ohio Civil Rights Commission found probable cause that he was denied access to a place of public accommodation due to his disability in violation of state discrimination law. “We essentially didn’t see that this was all that different from a motorized wheelchair,” says spokesman Brandi Martin. In November, more than a year after the original incident, the Ohio Building Authority, which owns the building, put in effect a new policy regarding Segway use on the same day Dr. McNamara filed a federal lawsuit against it. He has since received a settlement from the OBA. Dr. McNamara’s claim against the other defendant in the lawsuit, Reuben Management, which manages One Government Center, has not been resolved. Lisa L. Nagel, an attorney for Reuben Management, says it enforced existing policy and provided a wheelchair as a reasonable accommodation. Nationally, access issues don’t seem to be widespread. A bigger roadblock is price. Segways start at more than $5,000 and are not covered by health insurance, putting them out of reach for many. “The Segway was not designed as a mobility device and has not been approved by the FDA as a medical device so we are not allowed to market it as a medical device,” says Carol Valianti, a spokesman for Segway Inc. Fortunately, Dr. McNamara has found lower-tech and less expensive ways to help humanize those with disabilities. After all, the Segway can help him in the grocery store but he still needs something to get him around the house. So he bought some tools a year ago and learned to make wooden canes from scratch. “It kind of gives me a purpose in life,” he says. “I get to make something that’s not only comfortable and useful, but also beautiful.” Working downstairs, a stack of wood nearby, he shaves the wood with purpose and molds a cane handle until it conforms perfectly to his hand. The result is something elegant and distinguished. “I wanted something that was comfortable and attractive and doesn’t say, ‘sick person,’” he says. Already Dr. McNamara has donated about a dozen of his creations to the Ability Center and more are in the works. The Ability Center plans to loan them out for a nominal fee. “I can’t practice medicine any longer,” he says, “but I have found another way to be helpful to others.” http://toledoblade.com/apps/pbcs.dll/article?AID=/20090329/ART16/903280262/-1/ART06

Those of us who suffer from severe forms of chronic pain often have hope and prayers for medical research to bring us the treatment that will eventually work for us. Today that was partly spoilt by a top pain researcher who has been charged with fraud.

Please click the following link for the full article from Anesthesiology News:

http://www.anesthesiologynews.com/index.asp?ses=ogst&section_id=3&show=dept&article_id=12634

Love & light

Mel xx

The RACGP SA & NT Faculty, in conjunction with the Royal Adelaide Hospital Pain Management Unit, have developed a unique, user-friendly and online, pain assessment training program, to support South Australian GPs in managing their patients’ experiences with chronic pain.

The launch of the RACGP SA Chapter of Pain Management will take place on Tuesday, 2 December 2008, 7.00pm at Chloe’s Restaurant, 36 College Road, Kent Town in South Australia. Journalists are invited to join the launch of this important new patient care initiative.

“There is a huge demand for chronic pain management services in South Australia and although current services are working at capacity, this demand is still not met,” said Dr Stephen Leow, project advocate and member of the SA&NT Faculty Board.

“With the launch of this new pain assessment training program, the RACGP SA&NT Faculty is aiming to upskill the primary care workforce to better manage chronic pain in the community; expanding services to our patients.

“While there are many post-graduate courses in the management of chronic pain, until now none have been developed specifically for GPs. This training will equip GPs with the most current knowledge and latest skills to effectively manage chronic pain for our patients.

“As this new interactive pain management tool is available online, GPs can access it 24/ 7; at any time that suits them,” said Dr Leow.

Funding for this project came from a collaboration between private and government sources. Special thanks to: The Government of South Australia – SA Department of Health, Pfizer Australia, Mundipharma and Janssen-Cilag.

The RACGP has independently created this activity and holds editorial rights over it.

The Royal Australian College of General Practitioners (RACGP) is responsible for maintaining standards for quality clinical practice, education and training, and research in Australian general practice. The RACGP has the largest general practitioner membership of any medical organisation in Australia and represents the majority of Australia’s general practitioners.

Article Links:

http://www.medicalnewstoday.com/articles/131277.php

http://www.racgp.org.au/

Article Opinions:

The Start Of A New Beginning??

posted by Melanie on 13 Dec 2008 at 3:55 am

This is fantastic news. I have Complex Regional Pain Syndrome Type 1 and it took me over a year to be diagnosed. I have had GP’s admit to my face that they do not know what it is, that is fine though because I value honesty. with the waiting lists to get into pain specialists far too long this is something that is by far over due.

Many doctors still dismiss pain complaints from patients, by a) not medicating appropiately b) not referring the patient on to a Pain Management Team. I have had emails from organisations from the other side of the world who have had an Australian patient email for help because they are in so much pain and are asking for help.

So is this the start of a new beginning??
Will this lead to GP’s being able to diagnose/recognise chronic pain syndromes and begin appropriate (and know what is appropriate) medication whilst sending a patient on route to a specialist for back up and confirmation and possible further treatments?? This could result in less time spent at a Pain Clinic and free up the resources for high priority cases.

I suppose we have to start somewhere to fight this invisible epidemic!!

Thanking you
Melanie

The new finding by scientists at Northwestern University’s Feinberg School of Medicine, begins to explain a mysterious condition that the medical community had doubted was real.

The people whose brains were examined have a chronic pain condition called complex region pain syndrome (CRPS.) It’s a pernicious and nasty condition that usually begins with an injury causing significant damage to the hand or the foot. For the majority of people, the pain from the injury disappears once the limb is healed. But for 5 percent of the patients, the pain rages on long past the healing, sometimes for the rest of people’s lives. About 200,00 people in the U.S. have this condition.

In a hand injury, for example, the pain may radiate from the initial injury site and spread to the whole arm or even the entire body. People also experience changes in skin color to blue or red as well as skin temperature (hotter at first, then becoming colder as the condition turns chronic.) Their immune system also shifts into overdrive, indicated by a hike in blood immune markers.

The changes in the brain take place in the network of tiny, white “cables” that dispatch messages between the neurons. This is called the brain’s white matter. Several years ago, Northwestern researchers discovered chronic pain caused the regions in the brain that contain the neurons — called gray matter because of it looks gray — to atrophy.

This is the first study to link pain with changes in the brain’s white matter. It will be published November 26 in the journal Neuron.

“This is the first evidence of brain abnormality in these patients,” said A. Vania Apkarian, professor of physiology at the Feinberg School and principal investigator of the study. ” People didn’t believe these patients. This is the first proof that there is a biological underpinning for the condition. Scientists have been trying to understand this baffling condition for a long time.”

Apkarian said people with CRPS suffer intensely and have a high rate of suicide. “Physicians don’t know what to do,” he said. “We don’t have the tools to take care of them.”

The new findings provide anatomical targets for scientists, who can now look for potential pharmaceutical treatments to help these patients, Apkarian said. He doesn’t know yet if chronic pain causes these changes in the brain or if CRPS patients’ brains have pre-existing abnormalities that predispose them to this condition.

In the new study, the brains of 22 subjects with CRPS and 22 normal subjects were examined with an anatomical MRI and a diffusion tensor MRI, which enabled scientists to view the white matter. In addition to changes in white matter, the CRPS patients’ brains showed an atrophy of neurons or gray matter similar to what has been previously shown in other types of chronic pain patients.

Apkarian said the white matter changes in patients’ brains is related to the duration and intensity of their pain and their anxiety. It is likely that white matter reorganizes in other chronic pain conditions as well, but that has not yet been studied, he noted.

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Article adapted by Medical News Today from original press release.
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http://www.medicalnewstoday.com/articles/131081.php

Yes yes……..Aren’t we familiar??  Universally speaking don’t matter what medical condition but if it progresses or worsens…………….do we smile and take it gracefully? Are we unemotional beings?

Without fear, frustration, anger, confusion and saddness and the rest of the rainbow in between?? 

I know I put off even contemplating “new” symptoms…………. somehow we think if we just shut it out, it may go away???

We would do anything to not deal with our reality for as long as possible……………..eventually it catches up in one way or another and then comes the grieving process………….. AGAIN…………..that was the ultimate goal in repressing the reality wasn’t it???

So whether you have CRPS, MS, Systemic Lupus, Scleroderma…………….<insert anything here> (lol) or know or treat someone who does……………… Please make way for our emotional outbursts, irrational thinking, cynicism etc whilst trying to sort our heads out. We often go through stages of absolute ugliness, most of which we like to “hide” or we only do ourselves more damage if we don’t! Especially when people misjudge what we are actually saying…………….and when they think they are correcting where your heading  and it only sends us way off course as we just delude ourselves of a hole to go crawl into to die in………. If only people could read our minds at that moment in time! I know I was picturing a hole to crawl into whilst having an irrational outburst only last week!!

Anywho the most important message is these messed up thoughts and feelings concerning ourselves coming to terms with our worsen conditions is it is a process that just has to happen……………

Guess what I feel so over it now…………………….. does anyone get like that too?

Just trying to find common ground!

love & light

Mel xx

I would just like to thank all the people who dropped by You Tube or found my video ”Complex Regional Pain Syndrome” on You Tube.

I am so blessed to have reached so many people with my awareness video, I would especially like to thank all those who I know and don’t know who added the video to health and health professional forums and other fund-raising and awareness campaigns for both CRPS/RSD and chronic pain.

Thank you all those who were touched by my video and thanked me for helping them. All I did was put a song with very suitable lyrics to a few pictures and words to convey my own anguish. I am touched that this video has accurately portrayed other people’s anguish. I am also touched by all the messages from people telling me that their family and friends don’t understand and they are going to share the video with them.

I am feeling so blessed for being able to help so many people………..as I have said HE has a purpose for me…………………… I thank him for the gift of creativeness!!  

love & light

Mel xx