Jointman, a Survival Guide for Rheumatoid Arthritis

JOINTMAN

A SURVIVAL GUIDE FOR RHEUMATOID ARTHRITIS

Robert B.W. Morton B.A. B.ED.

Foreword by: Dr. Sharon LeClercq M.D. F.R.C.P. (C) Rheumatologist

Note for Librarians: A cataloguing record for this book is available from Library and Archives Canada at www.collectionscanada.ca/amicus/index-e.html

ISBN 1-4251-1058-4

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© Copyright 2007 Robert Morton.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written prior permission of the author.

isbn: 978-1-4251-1058-1 (sc)

Trafford rev. 06/30/2012

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Contents

FOREWORD

ACKNOWLEDGEMENTS

PROLOGUE

1    INTRODUCTION

2    IDENTIFYING RHEUMATOID ARTHRITIS

3    DEBILITATION AND DIAGNOSIS

4    TREATMENT

5    REHABILITATION: THE GLENROSE REHABILITATION HOSPITAL

6    SURGERY

7    REHABILITATION AFTER SURGERY

8    STRESS

9    NUTRITION AND WEIGHT CONTROL

10    EXERCISE

11    4 KEYS TO SPIRITUAL HEALING

12    SUPPORT GROUPS

13    SURVIVING TOMORROW

14.   EPILOGUE

15.   TERMINOLOGY

16.   REFERENCE LIST

To Sandy, my wife, best friend and angel.

And to Drew, my son and mentor.

The Guinness Book of World Records lists the following as leaders in joint replacement:

Anne Davison (UK) has 12 major joints (elbows, wrists, both shoulders, hips, knees, and ankles) and three knuckles replaced.

Charles Wedde (USA), who has rheumatoid arthritis, also had 12 major joints replaced between 1979 and 1995

FOREWORD

Rheumatoid arthritis (RA) is an autoimmune illness. In this group of illnesses, the immune system, which normally defends and protects, turns inward attacking many different normal body tissues. When the primary targets are the joints, patients develop inflammatory arthritis. If not treated early and appropriately, the result is persistent joint inflammation and progressive joint damage. All ages of people can be affected, even young children. Prior to the 1950’s, the eventual outcome in almost all patients was pain and subsequent disability.

However, there has been ongoing research in autoimmune diseases and new therapies. Within my 25 years as a qualified rheumatologist, I have observed a major change in the outcome of this illness. From the introduction of Methotrexate over 20 years ago to the recent introduction of more specific inhibitors of the autoimmune system with drugs termed biologics, there has been a steady improvement in disease control and better quality of life. We are now able to talk to our patients about Remission or absence of any sign or symptom of the illness. We do not yet have the therapeutic tools to talk about cure but it is truly an exciting time to be a rheumatologist.

Since Rheumatoid arthritis can affect all aspects of a person’s life, an individual with RA needs a team of health care professionals involved in their life long journey. The Glenrose Rehabilitation Hospital team in Edmonton has been instrumental in helping many individuals cope with the impact of their illness over the years. This team includes nurses, physiotherapists, occupational therapists, social workers, psychologists, recreational therapists, and physicians. It has been an honour to work with these dedicated staffs for so many years.

I have also had the honour and privilege to be involved in the lives and care of many wonderful people, especially Rob Morton, the author of this fine memoir. I have admired his courage; his determination to enjoy all aspects of life that those without arthritis often take for granted; and his resilience in pursuing a different path if the arthritis creates a roadblock. I would like to take this opportunity to express my thanks to Rob for sharing his journey with me. I am delighted with this book and its honesty and I know it will become a great source of inspiration and a beneficial aid for those suffering from this terrible illness.

Dr. Sharon A. Le Clercq

ACKNOWLEDGEMENTS

I gratefully appreciate all the assistance I received from my caregivers at the Glenrose Rehabilitation Hospital. Their continuous effort towards my physical recovery, answering all my relentless questions, and their dauntless tolerance, afforded me a quick and speedy recovery.

The medical staff, which includes my family doctors in Mayerthorpe, Dr. Liam Griffin and Dr. Robert Bernier, my orthopaedic surgeon, Dr. James MaHood, and especially my rheumatologist, Dr. Sharon Le Clercq, have all been supremely responsible for my recovery and for my continued good health. Gailene Kastelic, a nurse and a very good friend in Mayerthorpe has always been there for me, as well as JoAnne Wilson, a long time friend, nurse and angel. These are two people that Sandy and I know we can always count on no matter what impossible favour we ask of them.

I wish to acknowledge Sheri Banks, my psychologist for her insight and therapy that allowed me to overcome the deepest part of my recovery.

I received a lot of support from my teaching staff during my illness and throughout my recovery. The staffs at Sangudo High School and Mayerthorpe High School have encouraged me to complete this book and I will never forget those friends who visited me in the hospital during some tough times: Eric, Shelly, Kelle and Paul.

Two members from my days in the Fort Henry Guard and with the RCMP Pipe Band, Steve Prichard and Chris Beamish continually surprise me with their support and never-failing assistance, when a drum has to be carried up a hill in Halifax or a book needs to be dropped off at the hospital. I will always remember their visits and their spirit-lifting jokes when I needed a boost.

To all my friends and family in St. Catharines, as well as Lee and Mary, and Donna Curtis (who continually bugged me about this book get writing, and who typed several of the first chapters initially), thank you so much for your cards, letters and phone calls.

This book would never been completed without the hard work and effort of my typist Pauline Roth. Her efforts have been truly incredible, especially under the watchful eye of the boss. She is THE BEST!

My mother, June and my father, Mel have always been there for me and I love them and will always appreciate their understanding and support.

Finally, my son Drew and my wife Sandy, the two most precious people in the world. Their love, support and companionship has saved my life, and it is for them that I continue to fight on.

PROLOGUE

I used to stand out on the deck at night and stare at the stars. They are especially bright during the winter, and the Alberta sky is so vast and clear. I didn’t repeat the star-light, star-bright thing and wish my arthritis would go away (although I have done that on occasion). I wanted one star to become bigger and brighter than the others. It would start to move and I would track it with my eye until it became obvious that this star was really a space ship!

As it loomed closer and closer, the air began to vibrate, the snow quickly vaporized, the dogs ran and hid under the deck as a wide spectrum of blue haze slowly illuminated the night sky. Then a flash of white light, and a sudden fury - I was instantly sucked up into the space ship like a speck of dust through a huge vacuum hose! With keen forethought I quickly stored the date and time to memory so I could safely return to the same time and place knowing I would soon be charging through the vast blackness of space at light-speed into a new time dimension.

The inside of the space ship was clean; a shiny stainless steel alloy of some sort, virtually unknown on earth of course, wrapped around floors and side panels coalescing into a maze of serpentine corridors. I was rushed on a wheel-less gurney through the slippery halls like a pinball on a metal tube slide. The aliens had trained humans to do all their work as they had evolved into a useless lump of brains without appendages, unable to perform intricate functions. A beautiful scantily-clad Asian female was hooking me up to a machine in one of their interrogation labs ready to analyze my physical condition. They needed perfect human specimens for their space games. If, unfortunately, they captured less-than-perfect humans, perhaps humans with various medical problems, they would use their technology immediately to eradicate any imperfections and redesign the specimen from top to bottom, releasing only the strongest and fittest against their unsuspecting adversaries – the others: immediately discarded.

After a quick initial observation their instruments revealed inflammation and joint deterioration in almost every corner of my body - Arthritis! I was inferior, less than perfect! The sweat beads slowly rose on my forehead and flowed into my eyes. Would I be terminated, would I be ejected out into space through the elimination tube like an unwanted piece of human garbage?

Lights on the panels above my head began to flash; electrodes were inserted into my joints: my knees, ankles, hips, wrists, elbows, fingers, neck and chest. My body jerked wildly from a continuous hot energy blast. The heat became unbearable. Electric impulses invaded every joint; vibrations shook and pounded through my body down to my very soul.

Time passed, perhaps hours, yet it felt like an instant. I awoke. I was released a new man, not just cured of arthritis, but stronger, more powerful than the average man - I was a superman! I would eventually become their leader during their ridiculous war games using old weapons like swords and spears, running through dense forest, surviving in severe climates, challenging monstrous foes. With my sword held high, I stood ever victorious!

Finally after a three-year long adventure of war, strife and heroism I lead a small band of revolutionaries back to the ship where we managed to reprogram the computer’s database with the coordinates I had cleverly stored away in my keen memory and we directed the ship home.

I arrived back on the deck where only seconds had gone by in Earth time, but now I stood tall, strong, my hair was long, red and thick, my skin bronze, my muscles rippling. The dogs cowered under the deck afraid of this mighty stranger who appeared instantly before them……

Rob! Rob! Get in here, what are you doing out on that deck? It’s freezing. Close the door! Geez! What are you, nuts? It’s midnight. Go to bed!

1

INTRODUCTION

It’s difficult to find a starting point for this book and even more difficult to centre on the correct attitude: funny, serious, uplifting, and technical - especially when discussing diseases. I suppose it has to be all of these mixed together and you figure out your own theory as to my perspective on this thing.

This thing is RHEUMATOID ARTHRITIS a chronic crippling disease - doesn’t seem to be much humour in that but sometimes we have to look beyond the pain and just get on with it. So that’s what I’ve been doing. The arthritis doesn’t go away but my situation has surely changed on the subject, many times in fact, over the years.

I have a theory on arthritis and its future and on all diseases in general actually. In fact I have two theories and they are sort of working together. The first one is very encouraging and makes us all excited and hopeful whereas the second is downright criminal. You can do what you please with them, consider me crazy or whatever, maybe find some humour here, I promised you some anyway.

1. AIDS came along quite awhile ago, a very serious chronic illness in itself and so many people are suffering and dying, it’s like the plague in the middle ages and we can’t seem to do a thing about it, except that medical researchers are forced to study the human immune system very carefully because that’s what AIDS is attacking. If they treat the symptoms of AIDS: pneumonia, liver dysfunction, blood disorders, etc., they realize they’ll get nowhere close to curing the patient because it’s the immune system that’s causing the problem. So they are forced to study the immune system and in doing so they learn how it works and why some people never get sick or get cancer even if they smoke all their life and why a seventeen year old girl in Oklahoma dies of lung cancer from breathing in second hand smoke at a bar on Saturday nights, and she shouldn’t have been in there anyway. They try to figure out how to control the immune system because then they could control all diseases. No disease could survive in a body that has a great immune system that can fight every disease. From studying the Aids virus, researchers will unlock the key to the system that will eliminate all diseases: cancer, hepatitis, MS, MD and of course arthritis - everything. Like in Star Trek, Bones will give us a shot in the arm with a big silver syringe and up we’ll sit happy, feisty and ready to conquer the world. Well it’s a bit of a dream I suppose, but I think it will happen, when, I don’t know, maybe not in my lifetime, but it will happen.

U of A GROUP SOLVES IMMUNE SYSTEM MYSTERY

Missing Step In Body’s Battle Against Disease Uncovered.

Edmonton Journal, October 2000

Andy Ogle

"University of Alberta researchers have discovered a key missing link in the chain of events that starts when the body’s immune system detects a foreign invader.

The group - which includes Nancy Dower in paediatrics, Jim Stone in biochemistry and Hanne Ostergaard and Peter Dickie in medical microbiology and immunology - says the discovery could lead to new ways to fight cancer, organ transplant rejection and auto-immune diseases.

Their research, published this month in the journal Nature Immunology, starts with the ubiquitous T-cell, a kind of white blood cell which, among other things, acts as the immune system’s sentry. When a T-cell circulating in the blood stream detects a virus or something else that shouldn’t be there, it starts to produce molecules called cytokines or interleukins.

These molecules alert other T-cell and B-cell lymphocytes to mount an attack on the invaders.

Scientists have known for years that a protein called Ras plays a crucial role in this process. As a T-cell receptor bumps up against an invader, Ras gets turned on and begins a series of events that result in production of cytokines.

It’s a complicated process involving several different signalling mechanisms. In the Ras pathway alone, there are at least 12 events before there’s a change in the T-cell nucleus to produce the cytokines, Stone says.

The last missing link was the step just before Ras gets turned on.

The U of A researchers showed convincingly that a protein they had discovered earlier and named RasGRP (pronounced Ras-Grip) is that missing link.

They proved it by developing a strain of mouse that lacks RasGRP. These mice produced plenty of immature T-cells in the thymus but functional mature T-cells were rare or absent.

For years the mechanism responsible for Ras activation in lymphocytes has been a mystery, say Jeroen Roose and Arthur Weiss of the Howard Hughes Medical Institute at the University of California at San Francisco in a review article in the same issue of Nature Immunology.

They call the U of A group’s work an exciting study that adds a new chapter showing that RasGRP is critical for Ras activation during T-cell development.

There will now be a lot of interest in finding ways to affect this step, says