Never Give Up

Foreword

Eleanor Mills was the dreamer who sparked The Boney Express, a walk across Canada to educate Canadians about the reality of the debilitating disease, osteoporosis. She also wanted to raise funds for research aimed at treating this disease. She walked in 130 communities, with companions in the summers of 1993 and 1994, starting in Victoria, British Columbia and finishing in St. John’s, Newfoundland.

Eleanor was 79 in the summer of 1993. She described herself as a bent lady looking like an inverted L due to vertebral fractures caused by osteoporosis. A supervised exercise program, treatment that included daily calcium and the newly available wheeled walker took her from being almost bedridden to, as one newspaper described her, a walkie-talkie. She walked leaning on that walker at a pace that challenged younger and fitter people.

It is hard to remember how little was known about osteoporosis in the 1990s. It was not only the public, but also many health care professionals who lacked knowledge of the disease. It was often viewed as an inevitable result of aging. That only some people succumbed to it was considered either good or bad luck. Osteoporosis testing was new and available in few cities. Often the diagnosis was considered only after a fracture or several fractures had occurred. Diagnosis by fracture was common with little attention being paid to prevention. Medical treatment was limited to calcium supplementation, fluoride and sometimes hormone replacement therapy.

I was a practising physiotherapist until 2000. In most of the years since my graduation in 1958, the best treatments I could offer my clients were pain relief, postural exercises and education in avoiding falls and subsequent fractures. The changes from those early years to the present are astonishing. Awareness is much greater in all populations, and education about the disease and its treatment is readily available. Physicians have tools to assess risk levels in their patients and to measure bone strength. There is a broad range of pharmaceutical therapies now available, some aimed at slowing or halting bone loss and some wonderfully able to increase bone mass.

Eleanor’s trek gave the disease a huge public presence as she and her companions spoke about osteoporosis at every stop. The media (print, radio and TV) followed the Boney Express and while reporting on the walk, included basic information about the disease. The number of visits to physicians about osteoporosis over the two years was tracked and showed an almost 50 per cent increase each year in those visits. Public awareness and requests for help were powerful agents affecting positive changes in funding for research.

Although I met Eleanor on only two occasions, I felt compelled to write her story. Her charisma and her stamina left a deep impression on me. She was an engaging person, interested in everything around her. She had the brightness of eye of a small sparrow, spoke enthusiastically on many topics in the soft South African accent of her youth and communicated always with precision.

I have been involved as a volunteer and organizer with Osteoporosis Canada (OC) for many years. I was surprised to learn that, despite Eleanor’s amazing journey and the fact she was a patron of OC for 10 years before her death, relatively little attention has been paid to her walk. There is an Eleanor Mills Inspiration Award given by OC yearly to a volunteer within the organization, diagnosed with osteoporosis, who exemplifies Eleanor’s determination. Sadly, no history of the walk, of the others who walked with her nor of the impact they made exists.

When I called Eleanor’s daughter, Helen, to tell her I wanted to write her mother’s story, she greeted me with enthusiasm. She was delighted that someone wanted to remember Eleanor’s life and achievement. Her response to my request was to drive from Toronto, bringing five banker’s boxes of archival information about the Boney Express and her blessing to write the story.

The boxes contained minutes from many of the meetings of the walk foundation, detailing the highs and lows of the planning and financing of the walks. There was one box full of photographs, only some with places, names and dates noted. Too many of them had no reference to when, where or who. Another contained awards, proclamations and copies of media information about the walks. My favourite box included many of Eleanor’s first attempts to write the story about the walk, dated late in 1999 and early 2000. Although she had written varied beginnings to her story, she wrote nothing beyond an opening few pages.

In every file folder, there were rough drafts of letters, speeches, poems and information about people she met on the walks. As I sorted through this material, I tucked many of these notes into a file folder I titled Bits for Inclusion. Most were written on yellow pads, either half letter size or Post-its. It was frustrating to find pages 1, 2 then skip to 5, 6 and 8. I have not always used direct quotations from these notes, but have tried to incorporate many of her words to reveal her spirit. Direct quotations are shown in italics.

It has been an interesting exercise in discovery to find the players in the walk. I have the privilege of speaking directly with both Helen Mills and Heather Clarke, co-executive director of the walks. I have contacted Sandra Cumming, the road manager for 1993, Lorell Thoms (nee Yont), her assistant, and Marc Despatie, the team manager in 1994.

I also have communicated with Gerda Todd, the only member of the Boney Express still alive and her son Nigel. Just recently I met the three adopted nieces of Margarita Fuertauer. I have chatted with Edmund Colicos, Mona’s son. These people shared memories, diaries and photos.

Tanya Long, National Education Manager at Osteoporosis Canada, gave me information on the dates new medications came onto the Canadian market. She also introduced me to Dan Hill at Aymes medical, the major distributor for Dual X-ray Absorptiometry (DXA) equipment in Canada that tests Bone Mineral Density (BMD). Dan gave me information about the number of machines in 1994 and 2014.

Many others involved in organizing the walks have moved, died, changed their names or otherwise have become untraceable. Finding and interviewing people involved in these events over 20 years ago has been a challenge. For many of those people, I was asking them to remember an experience that represented only a few hours of their life. For those I could find, I thank them for their memories and their vivid descriptions of Eleanor, the team and the messages they carried. If there is a reader of this book who remembers Eleanor and the Boney Express, please contact me to share those memories.

Special thanks are due to Cameron Smith, now retired and living in Kingston, for giving me permission to include his article Suffering Bred in the Bone written in 1991, and to Laura Byrne Paquet for allowing me to include portions of her 1995 article, describing the 1994 walk in Brockville, Ontario. I would like to include the names of those people in the writing and newspaper circles who helped me find Cameron and Laura, but they are too many to include. Please know how grateful I am for the help.

The members of the board of the Niagara Chapter of OC gave me moral support and listened to my enthusiasm along the way. Special thanks to friends Marilyn Moore and Ruth Vandenberg who have exceptional abilities in proofreading and editing. I am indebted to many local historians, librarians and library researchers for diligently searching news archives for me. I have always loved books and libraries; now I also love librarians.

Eleanor’s story continues to be relevant. Public awareness of osteoporosis has improved in the 20-plus years since her walk; but when I speak at health fairs and to individuals about osteoporosis, there are still messages to share. They continue to be the importance of early diagnosis, the need to ensure adequate calcium in the diet and to continue to walk vigorously each day to keep bones strong.

Above all, I share my gratefulness to Eleanor for her determination and her mental toughness for never giving up.

February, 2017

Table of Contents

Foreword

Introducing Eleanor Mills

The Power of an Idea

Suffering Bred in the Bone

Eleanor’s Experience of Osteoporosis

The Bone and Mineral Research Group

Prevention and Rehabilitation of Osteoporosis Program (PRO)

Women Against Osteoporosis

Finding Her Feet and Her Dream

Organizations Concerned with Osteoporosis in 1990

The Dream

Walk Planning Begins

The Osteoporosis Canada Relay Walk (OCRW)

Pilot Walk in Toronto

Organizing the 1993 Walks

The Team Members

The Walks Begin in British Columbia

Alberta through Manitoba

Ontario

1994

Ontario 1994

Quebec

The Maritimes

Newfoundland

Osteoporosis Awareness Month

After 1994

Since 1996

Where are they now

The last few years

Appendix A: Measurable Changes since 1994

Appendix B: Advice from Eleanor

Appendix C: Eleanor about aging, written as she turned 82

Introducing Eleanor Mills

You just passed her and probably only gave a quick glance. You saw an old woman pushing a wheeled walker, bent over so much that her eyes were on the sidewalk just a few feet ahead of her. What you didn’t see was the determination, the strength and the passion that drove her. You didn’t realize that you just passed Eleanor Mills, a true Canadian heroine.

Maybe you did slow down and notice this 80-year-old woman sporting a Tilley hat leaning on her walker. She was moving at over five kilometres an hour, keeping up a lively stream of conversation, never seemingly out of breath nor of ideas. You didn’t know that multiple spinal fractures, caused by osteoporosis, forced her to walk with her upper body at more than a 60-degree angle to the ground.

This is the story of Eleanor Mills whose passion carried the news across Canada that osteoporosis need not be the crippling disease that had changed her life. It could be diagnosed early and treated successfully. Eleanor also wanted to spread the message that even with osteoporosis, there was no need to give up on life and living. She and her messages altered the way that osteoporosis is viewed and treated. She lived her motto Never Give Up.

The Power of an Idea

What had happened that caused Eleanor’s back to fracture? Eleanor was a victim of osteoporosis—osteo for bone and porosis for porosity, a decrease in the density and therefore strength of bone. This weakness or porosity of bone makes it fragile and easy to fracture.

The most frequent sites for osteoporotic-caused fractures are the bones of the wrist, hip and spine. The area of the spine usually involved is the mid back, and the fracture or crushing of several bones results in that bowed back sometimes seen in elderly men and women. Think of pictures in your childhood story books of old people bent over to the extent that their eyes were on the ground while they walked and worked. To many, that image belongs to old women, crones, although osteoporosis is an equal-opportunity disease affecting both men and women.

Aside from the pain accompanying osteoporotic fractures, there are side effects with spinal fractures as the curvature of the back decreases the space for heart, lungs and internal organs. Breathing can be labored, and digestion difficult because of this space reduction. The marked forward bend caused by the spinal fractures forces the affected person to tilt the head severely backward to be able to see ahead more than a few feet. This puts a strain on the neck causing pain and muscle spasm.

It is often thought that osteoporosis is an unavoidable consequence of aging. In the past, diagnosis was made by fracture although the disease had been present in an individual for many years. It has a nickname, The Silent Thief, referring to the fact that bone loss accumulates over several or many years until bone is so weakened that fractures can occur with minimal force.

Osteoporosis is the failure of the calcium-absorbing mechanism of bone, calcium being the strengthening agent. Just as skin, nails and hair regularly replace their cells so does bone. Normally bone is continuously absorbing calcium and losing it in a finely balanced equation. In osteoporosis, the absorbing ability is reduced, but the discharge remains the same resulting in weakened bones. That imbalance begins in the thirties for both men and women with bone loss at about 1% a year. When women approach menopause, they lose estrogen which accelerates the process.

Although suffering from those spinal fractures, Eleanor took on the task of informing Canadians about osteoporosis with the good news that it could be diagnosed early allowing treatment to be initiated before fractures occurred. She wanted to tell the whole country that diagnosis by fracture was no longer acceptable.

Eleanor, inspired by both Terry Fox and Rick Hansen, decided that a cross-Canada trek was the best way to spread that message. I think Eleanor related to them feeling that as both had overcome significant disability to carry their messages, so could she. Her secondary aim was to generate funds for research in treatment and prevention. Her walk and her speeches were powerful tools to carry both messages.

In the early 1990s, walks for a cause were unusual while now fundraising walks are a common and frequent event. However, even today a walk across Canada by a team is an uncommon concept.

Eleanor and her small support team took part in a series of five-kilometre walks in over 130 communities across Canada during the springs and summers of 1993 and 1994. At each community, they encouraged others to walk with them, and they spoke about osteoporosis. Eleanor and the team were known as the Boney Express.

The other three members of the original 1993 Boney Express also had osteoporosis as did her companion on the 1994 walks. Eleanor would point out that her fellow walkers had been diagnosed relatively early in the disease. None of them had suffered the severe fractures she had. The others were a visual reminder of her message that osteoporosis could be recognized in its early stages and treated successfully. As well, they all carried the message that osteoporosis did not mean the end to an active life.

Suffering Bred in the Bone

I have copied an article written in 1991 by Cameron Smith and reprinted here with his very kind permission. This was written while Eleanor was starting