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A banker's drive to survive Saturday 23 September 2000 - Toronto - Despite being handed one of humanity's cruelest diseases, Tim Noel, deputy governor of the Bank of Canada, has never considered giving up the work he loves. The man whose slightest utterance can make stock markets roil or the dollar tremble, is, nonetheless, powerless to even lift a pencil. Tim Noel, deputy governor of the Bank of Canada, requires 24-hour support to do his job. Not just a doting secretary or a personal trainer, but someone to turn the pages of his briefing documents, to tap out his computer messages, to shake hands for him, to take him to the washroom, and even sleep at the foot of his bed so he doesn't suffocate in the middle of the night if his ventilator slips out of place. Although amyotrophic lateral sclerosis or Lou Gehrig's disease is rapidly shutting down his body, his powerful mind is stranded and aching to do good work. So it -- he -- does. In the process, he has become a guiding light for those who live through catastrophic illness, and perhaps a lesson for those who fixate on far less. His friends in the banking community have set up an endowment fund in his name for scientific and clinical research. It is growing quickly, nearing the $1 million mark. And tomorrow, he will be one of the guests at a fund-raiser for the ALS Society of Ontario. Mr. Noel, who is 57, has worked at the Bank of Canada for 34 years, and been deputy governor for the last six. He oversees the bank's operations in domestic and foreign exchange markets and helps determine the bank's monetary policies, whether it is interest rates or rescuing a sagging dollar. Although he has been handed one of humanity's cruelest diagnoses, he's never seriously considered giving up the work he loves. In his spacious office at the Bank of Canada on Wellington Street, he sits in a fully automated wheelchair, which helps him do the work that his legs and arms, now completely useless, once did. He takes breaths, every three or four seconds, from a ventilator tube near his mouth, making the rhythm of his speech unnatural. Still, he cherishes his voice, because often in ALS, speech is the first to go. His secretary and a personal aid have left the room for the time being, but are usually with him. If the ventilator were to be accidentally knocked away from his mouth, he would have 10 seconds to call for help, then he would begin to suffocate. At his arm, there is a phone activated by the sucking and blowing of his precious breath. Meanwhile, his computer flashes black and green, lit up by the ebb and flow of stock markets around the world. This morning, he has already been briefed about activities in international markets, and in turn he has briefed the bank's governor. This afternoon, he has meetings with members of the Montreal stock exchange that he will conduct via telephone. He arrived at the office just after nine, and he will be chauffeured home at 5:30. He has not reduced his workload at all. It's just never really occurred to him. "When I was playing golf in the summer of 1998, if someone had told me that within a year and a half I would be in a wheelchair, I would have maybe thought life is not worth living. That's not the way it is at all. You adjust, you adjust to your different phases," he says without a hint of bitterness or anger. In the fall of 1998, his right leg felt weak, like it would give way, especially when he was golfing and lugging his bag around the green at the Royal Ottawa Golf Club. He visited various doctors and underwent a battery of tests, until March, 1999, when a neurologist told him he had ALS, before walking out of the examining room. "Deep inside I expected something reasonably serious but I wasn't prepared for the diagnosis they gave me. That was quite a day," he recalls. On the way home that night, Mr. Noel stopped at Chapters to find out what the doctor hadn't taken the time to tell him. He was going to die, quickly and cruelly. ALS kills the nerves controlling movement in the arms and legs and the muscles used in breathing, swallowing and talking. Of the dozens of degenerative neurological disorders thought to be caused by the progressive death of specific groups of cells within the brain, ALS has the highest mortality rate, followed by Alzheimer's and Parkinson's diseases. Ninety percent lose their battle within five years. Some live longer. There are no cures or even treatments to significantly slow the progress of ALS, the grim result being that patients, on average, die peacefully of respiratory failure within five years of being diagnosed. Between 1,500 and 2,000 Canadians, most of them over 50, have ALS. Every day, two or three Canadians die of ALS. He quickly realized it was going to be a challenging death, to understate it. The next day he was scheduled to fly to Switzerland for a meeting. In a frenzy of emotional phone calls, he told his two children, Christine, who's now 28, and Derek, 25, as well as other family members, close friends and a few colleagues at the Bank of Canada. "Then I just got on that plane." By May, he couldn't move his legs and turned to a wheelchair. A few months later, he lost control of his arms. Less than a year after his diagnosis, he lost use of the muscles required to breath and required a ventilator. He uses what's called a non-invasive ventilator, which isn't inserted into his throat, but instead a tube sits near his mouth. That way he can still speak. "I quickly came to the view that it could have been somebody else, but it was me, so I accepted it and I'll try to deal with it," he says. "I've found each phase difficult. But you deal with them and life isn't all that bad. My focus is on day to day stuff." For example, he knows he'll probably lose his speech, and that might mean the end of his career, but he'll deal with that if it comes. After his diagnosis, he asked his bank colleagues if he could continue to work, and they agreed to do whatever they could to help him do his job. He still chairs the Canadian Foreign Exchange Committee, but has to do so by phone, and says he'll step down if it becomes a problem. Because he can't travel, all of his out-of-town meetings are conducted via telephone. He says he can't thank his colleagues enough for their support because he realizes that most people could not continue to work under these circumstances. First of all, many would not want to, but mostly they could not because of the types of jobs they had. "I once wondered, do I want to show myself like this. That's long gone. I got over it. You certainly don't want people feeling sorry for you, and that's important, but I've got a pretty optimistic outlook toward life and then the people around me are comfortable. It's the reaction of my colleagues and friends that helps. They're all very matter-of-fact and it works." He has so many admirers in the Canadian and international banking industry, that when colleagues heard he was ill, they organized a dinner in his honour and announced the Tim Noel Endowment Fund. A golf tournament in Toronto last year raised $500,000. Altimira Investment Services administers the fund for free. "He's a first-class person who not only has served his country well, but is an absolute pleasure to deal with. He has many, many friends involved in this fund," says Altimira's president, Gordon Cheesbrough. Mr. Noel hopes the fund, which will be controlled by the ALS Society of Ontario, will support scientific research into the little understood disease, as well as clinical research, so people with the disease can be helped to live with dignity. "In Parkinson's and Alzheimer's, because the mind is affected, they often end up in long-term care. But with ALS, the mind remains strong until the end, so most people want to die at home," says Mr. Noel. "The care that is required for someone like me is very substantial. The devices that are needed are incredible." The list is very long: Elevators or lift systems at home, shower chairs, special toilets, ventilation systems. Mr. Noel, who lives alone, receives four hours of care each day, which are paid for by the government. The other 20 hours are covered by a combination of insurance and from his own pocket. Five people from a company called Care Options are with him 24-hours a day. He also relies heavily on his children. His golf buddies also take turns coming over on Thursday night's to cook him dinner and talk about the latest golf game. "I'm not rich by any means, but at least I can pay for someone to stay with me over night. What about people who don't have the means I have?" says Mr. Noel. Richard Woods, president of the ALS Society of Ontario, said in an interview that the average cost of equipment required for a person with ALS is $127,000. Nursing care can cost ten times more. The ALS Society of Ontario helps pay for part of the equipment, as well as providing support for patients and their families and friends. Woods says ALS sufferers and their families desperately need more support from the government for equipment, in particular. Those with ALS have to wait months for walkers and wheelchairs, and by the time they get them, their disease has usually advanced beyond the equipment they'd asked for, and they require something else. "They need help to manage the disease as they move toward a dignified and graceful exit," says Woods, who lost his brother Mark to ALS. Tomorrow, the ALS Society of Ontario will announce the opening of an Ottawa office to support local patients and their families by providing equipment and advocacy, and to unveil a partnership with Akara, a Kanata-based fibre-optics company that has committed to help the society raise $100,000 a year. The wife of a senior member of the company was diagnosed with ALS. Woods says that because of the type of illness ALS is, few sufferers or their exhausted families can lobby the government for support. "Their body may be defeated, but their mind is still fighting," he says. "Tim is a perfect example of that." Meanwhile, with the knowledge that the fund in his name will make a significant difference to other sufferers' lives, Mr. Noel tries to focus on each day, and not dwell on the future. "If I can't do the work I realize I must retire, but so far it hasn't affected my voice. Communication is pretty important if you're going to work," he says, marveling at physicist Stephen Hawking, who against all odds, has lived with the illness for 30 years. "He does it but he's pretty extraordinary. But nonetheless I understand how he does it. You adapt your circumstances. I'm amazed how quickly I can adapt." He repeats a favourite saying, told to him by a good friend. "'Today is a gift. That's why they call it the present. And you should never let the thieves of yesterday or tomorrow rob you of that gift.' It summarizes my philosophy quite well." ALS Society of Ontario Opens Ottawa Office The launch of the ALS Society of Ontario's Ottawa office, as well as a partnership with Akara Corporation, will be celebrated Sunday, September 24, from 1:30 to 4:30 p.m. at the Nepean Sportsplex. It will feature Jean Stilwell, world-renowned Canadian mezzo soprano, and pianist Robert Kortgaard, as well as the Jacob Two Two Band and Elliott Smith's Mystical Magic and Daisy the Clown. Jim Durrell with be Master of Ceremonies. Members of the public are welcome. Shelly Page The Ottawa Citizen http://www.ottawacitizen.com/national/000923/4565597.html janet paterson 53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd TEL: 613 256 8340 URL: http://www.geocities.com/janet313/ EMAIL: [log in to unmask] SMAIL: PO Box 171 Almonte Ontario K0A 1A0 Canada