Excerpts from the NACPAC Track Winter 1999 Volume 6 Issue 4

NACPAC MEMBERS FEATURED ON TV ONTARIO’S "YOUR HEALTH"

The segment was on chronic pain and was taped at the participants’ homes in the form of interview and "action shots" clearly indicating to the audience exactly what a chronic pain condition looks and feels like. Many thanks to Bonnie Kennedy and Rod Graham from the Mississauga NACPAC group, President Al Gaudet and V.P. Anne Bell for sharing with the interviewer their knowledge and experiences of living with chronic pain. The segment ended with an in-studio interview with CBC’s Dr. Brian Goldman. Dr. Goldman is a highly respected authority on chronic pain and a proponent of the use of opioid therapy, where appropriate, provided there exists a strong commitment on the part of both doctor and patient. From his discussion, it is obvious that many doctors and their patients could benefit from a better understanding of the use of such drugs as a vital option in the arsenal against chronic pain.

NEW "SMART DRUG" FOR CHRONIC PAIN

THE 2nd ANNUAL NACPAC HALIFAX CONFERENCE "LIVING WITH CHRONIC PAIN: BODY, MIND AND SPIRIT, PART 2"

The planning for this year’s conference started last fall. In January, the Royal Bank Lecture Theatre was booked. Linda Pullin, a nurse in the Pain Management Unit at the hospital, helped me and my co-leader/co-host, Marsha Gannon, with the program and booking hospital facilities. Linda knew who to ask for assistance from the various drug companies and lent her office for our many meetings.

We used the evaluation sheets from last year to decide what was most requested and most needed. Fibromyalgia was the most requested topic, so we decided to make that the main address. We liked the Body, Mind and Spirit title from last year, so we used it again to design the program. Fibromyalgia was considered the "Body" aspect of our title. Pain and depression were often mentioned and Dr. Lynch, a psychiatrist at the pain clinic, was the logical person to address the topic. So that was the "Mind" aspect of our title. Coping was also frequently mentioned and became the "Spirit" aspect. Rev. Dr. Jody Clark, an Anglican Priest at the Atlantic School of Theology where I had addressed a class on the topic of chronic pain last Christmas, agreed to be our speaker for this topic. Marsha’s family doctor knew of a psychologist, Dr. Stuart Donaldson, who had a clinic in Calgary for treating Fibromyalgia, ADD, Myofascial Pain Syndrome, etc., and he was interested in speaking on "Fibromyalgia, Present Status/Future Direction'.

For the afternoon, we decided to have a demonstration on massage by Shelagh MacLean, Registered Massage Therapist, and on accupuncture by Eileen MacKinnon, Physiotherapist. In addition to the interest in such alternative therapies, there was interest in hearing about food and nutrition. Nutritionist Janet Plowman addressed the topic of "Diet and Pain".

After program planning came fundraising and publicity. A brochure and posters were designed. One of our psychologists who works with the chronic pain patients, undertook to send out brochures to the people who attended their courses for the past two years. That was wonderful, both for the number of people contacted and the use of hospital postage. I mailed out brochures to people on our lists, in our groups, and the leaders around the province. We sent posters to all the pharmacies in the province. We were fortunate to have a journalist, Donna Benoit who is a chronic pain person and writes for a number of small newspapers around the province, put a write-up in each of the papers. Iain and Connie Jones did our name tags and signs again. They run a computer site called PAINS (Pain Awareness in Nova Scotia), post interesting articles, and keep the public informed about what is going on in our province. They put our conference on their site, and kept updating the information as we were able to give it to them. The pharmaceutical companies were very good to give money, and the businesses gave samples, gift certificates and whatever they had to offer.

Publicity was enhanced again this year, with the help of Natalie Fraser from the Public Relations department of the hospital. Natalie sent out an announcement on the hospital letterhead to the radio and TV stations and newspapers in the twin cities. I followed up the following week with phone calls to make sure the faxes went where they were supposed to go. We phoned the radio and TV stations trying to convince them that this would be a great event for them to cover. One of the TV stations came to my home to do an interview that was combined with one they did at the hospital of Dr. Lynch. It appeared the night before the conference and did bring a lot of people out who had not heard of the conference before that. We were not able to get a spot on CBC, as we did last year, but maybe next year. Last year Mary McCarthy, a Psychology student at the hospital, acted as my ears, eyes, and legs. She volunteered to help again.

Dr. Stuart Donaldson, who spoke to us about Fibromyalgia, has spent many years studying and researching Fibromyalgia, Myofascial Pain Syndrome, Chronic Fatigue Syndrome, Repetitive Strain Injury, Back and Neck Pain, Headaches, ADD, ADHD, and Closed Head Injuries. Myosymmetries Halifax, a company which Dr. Donaldson founded, provides professional rehabilitation for people with these conditions. He believes Fibromyalgia is not a muscular problem, but a Central Nervous System problem thus approaching it differently from Rheumatologists up to this time. The mission of the clinic is to treat clients in a drug free non-invasive manner to optimize health. They have a staff of professionals who have extensive training in treating chronic pain and who collaborate in the treatment plan development. He cautioned people not to use acetomephen(tylenol), tread mills or TENS machines. Dr. Donaldson told us of his research. He showed us slides of his studies, and the use of EEGs to show the difference in the muscles of a person with FM and a person who doesn’t have FM. This was the first time the research was made public.

Treatment in his clinic is not yet covered by insurance companies. The initial assessment can cost up to $800, out of reach of many pain sufferers. It could take a person with FM several months to be treated and hopefully cleared of symptoms,and each month could cost several thousand dollars. Dr. Donaldson hopes to prove to the insurance companies that this is the way to go, because patients would be able to come off all their medication at the end of treatment. He stresses that "it is important for people with chronic pain to realize there are a number of ways of treating the pain. They should keep looking until they find one that works."

Our attendance at the end of the day was 148, and many additional people came only to hear Dr. Donaldson. I think that when he was speaking the auditorium was full. We had some people who came for half a day. If people had financial difficulties, we waived the twenty dollar registration fee and encouraged them to come.

We were happy but exhausted at days end and felt very grateful for the support of everyone at the QE11 Health Sciences Centre, especially the Pain Management Clinic. Thanks also to Betty Grant and Shirly McBain of the NACPAC Board of Directors, who drove all the way from Brampton and Peterborough to join us. We were so glad that you could come. I think I can safely say that Marsha Gannon and I enjoyed the whole experience. Although it took a toll from both of us, it was energy well spent.

HELEN TUPPER, HALIFAX METRO AREA NACPAC SELF-HELP GROUP CO-LEADER.

THE PAIN TRUTH - By "Big Jim" Bristow

Imagine waking up every morning to yet another day that you know will be filled with pain severe enough to drive you to tears. I am talking about a pain that has robbed you of the ability to earn a living, to enjoy a normal social life, to manage even the simplest of tasks, a pain that has all but destroyed your quality of life. Only the person who feels that kind of pain can measure the true intensity of its impact on the body, mind and soul.

Chronic Pain can be the result of an accident, disease, physical deterioration, age or many other factors. While even narcotic medications will not completely eliminate the pain, they can at least lower the intensity enough for the person to at least function in an acceptable manner with some dignity and quality of life. In some cases they may even be able to remain in an employable situation. Unfortunately, most doctors are afraid to prescribe strong, narcotic medications for the very real fear of reprisal and legal ramifications. Patients are told they simply must learn to live with it! .

Under existing laws and rules of medical and pharmaceutical regulatory bodies, a doctor who prescribes narcotics could lose the right to prescribe for patients, lose hospital privileges, have their licence revoked and possibly face prosecution. Effective medications like Morphine, Percodan or Percocet, Demerol and others may not even be considered.

New laws must be made by people in power who are willing to take off their social and politically correct blinders and deal reasonably and with compassion regarding the needs of people who suffer from Chronic Pain. As it is, doctors who have been sworn to relieve pain and suffering are being told by legislators and policing agencies to what degree they can apply their skills.

There are basically three major problems with narcotics, which impact on the ability of the Chronic Pain person to obtain narcotic prescription medication. First, the mere mention of the word "NARCOTICS" conjures up visions of social degenerates, addicts, criminals, crime and other negative images. So great are the negative and sensational aspects on narcotic related problems that the positive, constructive and beneficial side of the product rarely sees the light of day in a media story.

Secondly, there is the problem for the doctor of image perception by co-workers, regulators, the police and even the general public. A doctor who becomes known to be overly free when prescribing narcotics will draw more new patients to his or her waiting room than flies on a jar of honey. The doctor may also draw unwanted attention from other areas as well.

Thirdly, the problem of potential psychological dependence or addiction should be a major concern. There is a belief in some medical circles that prolonged use of prescription narcotics will result in addiction. What I can and do agree with here, speaking from experience, is that a person with true Chronic Pain who takes narcotic medication for relief does not experience a high of any kind. The euphoric effect sought by the recreational user is devoured in the Chronic Pain person by the pain itself. The person using the medication in legitimate cases feels a lowering of pain intensity. The pain is not eliminated completely but is made less debilitating.

In at least two states in the United States, doctors have fought for and won an intractable pain law designed to protect medical professionals compassionately helping a person in unbearable pain. We need a law like that in Canada. I would suggest that the Drug Enforcement Section of the R.C.M.P. create a special Chronic Pain registry. Doctors who are now kept from doing their job as a result of fearing the police will then be able to work with the police by registering any patient who requires narcotic medication. This could curb the senseless actions of a patient driven by pain to do something stupid. It would also take some of the heat off police resources needed to investigate what need not be an abusive situation. A person with intense pain every day does not deserve the additional insult of humiliation, suspicion, lack of respect and understanding, and being treated like a criminal.

If you have a legitimate case, do not apologize for your need. Quality of life is a human right, not a political or legal gift. No important and innovative advance has ever come from silence or lack of involvement.

Ed. note: Jim Bristow is a Chronic Pain survivor, formerly from the Arnprior NACPAC group. He was a broadcaster on radio and television shows called "Big Jim’s World". Jim was a professional traveller who did photo shoots for airlines, cruise lines and tourist boards. He is presently doing a fair bit of writing and creating a series of audio cassettes on subjects with which he is familiar. The excerpts from "The Pain Truth" are just a small part of his "Living With Chronic Pain" cassette which covers dealing with doctors, the family, feelings, etc. Another cassette entitled "Love Lost & Love Found" deals with the feelings and problems during marriage break-up and divorce, and how to survive. Side two covers love and what it could and should be. For more information or to order a cassette, Jim can be reached through his website: http://www.renc.igs.net/~bristow/

SEELEY’S BAY NACPAC GROUP

Group Leader: Gordon Berry

Gordon Berry has been active in the community despite having chronic pain himself. He has done a lot of work for Seeley’s Bay annual Winterfest activities and has been running the NACPAC group for approximately two years. Group membership varies on the average between five and ten members, sometimes reaching fourteen participants.

Upcoming plans include having a pharmacist and family practitioner as guest speakers for the group and perhaps starting another chapter in the Kingston area as some people are coming from there to the Seeley’s Bay group.