People We Know
News about people who have made significant contributions to the disability community.
Congratulations to Audrey King, PhD, who was awarded the Queen Elizabeth II Diamond Jubilee Medal by Ontario Lieutenant Governor David C. Onley at a special ceremony in September. The medal honors the Queen for her service to Canada, and also serves to honor significant contributions and achievements by Canadians. King, a psychologist and a ventilator user, played a key role in establishing Ontario’s attendant services, supportive housing, outreach services and the Direct Funding program.
Congratulations to Norma M.T. Braun, MD, FCCP, who presented the Margaret Pfrommer Memorial Lecture in Long-term Mechanical Ventilation at the recent annual meeting of the American College of Chest Physicians. Her lecture was entitled “Advocacy for Patients Supported by Home Mechanical Ventilation: Impact on Readmissions and Quality of Life.” It illustrated how effectively physicians can partner with their patients for optimal health care.
"Every day is a good day, and some days are better than others." Gary McPherson, 1946-2010
Gary McPherson, CM, AOE, LLD, died May 8 of colon and liver cancer. A vent user since 1955 due to polio, Gary spent 34 years living in a special ward at University Hospital in Edmonton, Alberta. He moved out of the hospital into his own home in 1989 after marrying Valerie Kamitomo in 1988.
Gary became a successful businessman and politician in Edmonton, Alberta, influencing public policy by serving as head of the Premier's Council on the Status on Persons with Disabilities. He also was president of the Canadian Wheelchair Sports Association and received innumerable honorary degrees and awards, including the Order of Canada (see below).
In 2006, Gary campaigned as a candidate for the premiership of the Progressive Conservatives in Alberta, and, although he did not win, his sense of humor and engaging smile enlivened the campaign.
Rolling On, a biography by Gerald Hankins, was published in 2003, and Gary's autobiography, With Every Breath I Take, in 2007.
Gary is survived by his wife Val and children Keiko and Jamie.
A champion frog breather, Gary used glossopharyngeal breathing during the day. His 1983 video demonstrating frog breathing can be viewed at www.garymcpherson.com/?#Frog_Breathing
Gary's account of hospital experiences in 2008 appeared in Ventilator-Assisted Living, www.ventusers.org/edu/valnews/VAL_23-1spring09p6-7.pdf.
Last year my 80th anniversary was celebrated by the Editors of the Czech bimonthly magazine MUZES (you are able), VOZICKAR (wheelchair user), VOZKA (wheelchair driver) and the BULLETIN OF THE CZECH ASSOCIATION POLIO (of Polio Survivors). I created a small, illustrated and partly humorous, recapitulation of my colorful life with polio. In July, I tested the accessibility of the new cabin cableway up to the CERNA HORA (Black Hill) of KRKONOSE (Giant Mountains) in Czech Republic, for power wheelchairs, too.
But last year, I also started having urological problems that contributes toincontinency, which is contrary (makes it difficult) for the important spa treatment of for my PPS.
HAPPY NEW YEAR to you and all polio survivors, Mgr. Alois ("Ala") Wokoun, firstname.lastname@example.org
IVUN salutes Norma Braun, MD, who retired in July as Senior Attending Physician, Pulmonary and Critical Care Division, St. Luke’s-Roosevelt Hospital in New York City. Dr. Braun writes, “Although I am retiring from private practice, I am trying to set up a neuropneumology clinic at St. Luke’s where I will volunteer to see patients with ventilatory problems due to neuromuscular diseases. This will include all my present ventilator patients.”
Dr. Braun started her internship on the Bellevue Chest Service where in 1963 she first saw the use of noninvasive ventilation: iron lungs for patients with COPD. This spurred her research and led her to the study of respiratory muscle function. Dr. Braun published the first study of the relationship between respiratory muscle strength and the ability to sustain eucapnia (the condition in which the CO2 tension of the blood is normal).
Dr. Braun has taught at all levels as a clinical professor of medicine at Columbia University; served on medical boards; published more than 50 papers, abstracts, book chapters and e-internet articles; and most importantly, been a strong and ceaseless advocate for her patients.
In Memoriam: Jack L. Quigley, Jr.
John (Jack) L. Quigley, Jr., died August 25, 2006 in Mount Pleasant, South Carolina. Long-time members of IVUN will remember Jack as a contributor to the Rehabilitation Gazette, where he contributed his experiences of living with a spinal cord injury and using nighttime ventilation. Quigley was a personal friend of Gini Laurie, the founder of the organization, and eloquently honored her at the Fifth International Polio & Independent Living Conference in June 1989, just one month before her death. He served on the Board of Directors of then Gazette International Networking Institute for several years and was its President from 1988-1990.
Judith Raymond Fischer retired as newsletter editor of Ventilator-Assisted Living, but will assist through a transition period and will continue to serve as an Information Specialist.
Called IVUN News until mid-2003, the newsletter began as a vision of the organization's founder, Gini Laurie. Fischer, with her eye for detail and her insistence on the facts, provided the dedication and skill to make the quarterly newsletter a reality. Fischer, who has edited this publication since 1989 as a volunteer, became involved with the organization in the late '60s when it was coordinated out of Laurie's home in Chagrin Falls, Ohio. In 1987, she married D. Armin Fischer, MD, a pulmonologist to many polio survivors in Southern California, and moved there after serving as the organization's Executive Director for more than three years in Saint Louis. Dr. Fischer died in 1997
From Maggie Prestwich about John Prestwich
"It is with great sadness that I write to tell you all that my darling John died on Monday 27th February. He had been in St. Thomas' Hospital, London for a few weeks undergoing tests for an obvious problem with his blood chemistry. The day he was due to come home he suddenly developed tremendous stomach pains. Following investigations and tests, he underwent emergency surgery and it was discovered that he had a perforated stomach.
He survived the operation but for the next 3 weeks he was being ventilated by the tracheotomy they'd had to perform at the time of surgery. This was unbelievably devastating for him as it meant he was unable to communicate.
Added to that, his one kidney wasn't functioning so he was on dialysis. On Monday 7th February he had to be taken to the operating theatre again to find the reason why he wasn't recovering as well as he should be. Sadly, this time he didn't make it and died on the operating table. All I can be thankful for is that he was unconscious at the time and therefore not suffering. Also, I'm sure he wouldn't have wanted to spend the rest of his life possibly on dialysis and maybe unable to revert back to using a negative pressure ventilator – i.e. ending up not as a person with a disability but as an invalid.
Inspite of the extent and the length of time (50 years) of his disability, he was such a positive person. He was such an inspiration to not only all who met him, but from all the emails we have received from many people worldwide who over the years have come across our website, www.johnprestwich.btinternet.co.uk. He has been an inspiration to people we have not met. A service of Thanksgiving for his inspirational life is being held on March 16th at our village church in Chipperfield, Hertfordshire UK.
Photo of John Prestwich (taken at Royal Ascot 2003) which depicts his positive spirit and that wonderful twinkle he always had in those blue eyes of his.
In Memoriam: Edward Anthony "Tony" Oppenheimer, MD, FCCP (1937-2005)
Our readers will be saddened by news of the death of Dr. Tony Oppenheimer, who died of complications of multiple myeloma in November. Many of you knew Dr. Oppenheimer through his extensive email practice on respiratory matters related to neuromuscular disease, begun after he retired in 2000 as Chief of Pulmonary and Critical Care Medicine, Southern California Kaiser Permanente Group. Others experienced Dr. Oppenheimer firsthand as their superb physician at Kaiser, while many of us knew him as a delightfully philosophical and engaging friend, colleague and mentor.
As a member of IVUN's Medical Advisory Committee, Dr. Oppenheimer provided thoughtful and comprehensive contributions to IVUN publications and careful review of its pulmonary articles. He worked diligently, but gently, to educate ventilator users and their families, to ensure that they became accepted as equal partners in the decision-making process about the use of assisted ventilation.
Dr. Oppenheimer understood the technology and the power of the Internet early on and utilized it to the fullest to educate other health professionals about assisted ventilation. His utmost concern about quality of life issues reflected his belief that users of long-term assisted ventilation at home could live the best possible life.
"Tony epitomized the patient-physician partnership through his work with people who use ventilators longterm in the home care setting. Tony was an 'R.D.' or 'real doctor,' balancing expert medical care with humor, generosity and compassion. He was also a true advocate for ventilator users," states Judith R. Fischer, who collaborated with him on several articles for respiratory care journals and for IVUN's quarterly newsletter, Ventilator-Assisted Living.
Richard Daggett, President of the Polio Survivors Association, Downey, California, whose association enjoyed Dr. Oppenheimer's talks on post-polio respiratory problems, says, "Polio survivors have lost a good friend. Dr. Oppenheimer provided us with valuable, often life-saving information about pulmonary issues. He was always accessible and generous with his time. He will be missed, both personally and professionally."
David Ronfeldt agrees. "As Dr. Oppenheimer's patient since 1979, I found Dr. Oppenheimer (I usually called him 'Chief') to be an excellent doctor, skilled at my post-polio respiratory issues, and a fine, sturdy, positive fellow to be around. He was always interested in what else was going on, and always ready with an engaging smile. He listened, he cared, he advised sensibly, he never stopped learning, and at crucial moments he took extra steps that turned out to matter."
Ismail Tsieprati, who has ALS and has used tracheostomy positive pressure since 1990, and his wife Cheryl remember "Dr. Oppenheimer's deep love for people and how he took joy and pride in the success and well-being of others. He loved to help others and never stopped giving of himself ? the greatest humanitarian we have ever known. He touched our lives profoundly, and we'll always be grateful for the excellent care, the encouragement, the hope and the support he gave us throughout the years. The world has lost a great man. We have lost a dear friend."
Professionally, Dr. Oppenheimer was Associate Clinical Professor of Medicine at UCLA's School of Medicine. He was also a member of the California Thoracic Society, the American Thoracic Society and a fellow of the American College of Physicians and the American College of Chest Physicians.
Àla Wokoun: Czech Polio Survivor's Trilogy
Polio Association of the Czech Republic (www.polio.cz) has published a biographic trilogy sponsored by the Czech Ministry of Culture. The author of the three Czech paperbacks, Mr. Ála (Alois) Wokoun was affected by polio in 1945 when he was 19. The trilogy has not been published in English, but the basic author's English biography from the year of his paralysis is in the web site www.polio.cz/Wokoun_a.html with two photographs and contacts.
In the first tome of his trilogy, under the title SVETOBEZNIKEM SE SADISTKOU (Globetrotter with Sadist Polio), the author narrated his dialogues and duels with polio, how he became a Kenny therapist in wheelchair, and in other chapters, he humorously depicted his travels on crutches and in a wheelchair to 40 countries on 4 continents. Some of his adventures, e.g. how he became an therapist or coqueted with a camel, were published by Gini Laurie in Toomey j Gazette. Later the readers of the Rehabilitation Gazette from Saint Louis read how a paraplegic was able to mount an elephant.
In the second tome SLASTI VOZICKARE (Delights of a Wheelchair User, 2000), Àla Wokoun satirically deals with wheelchair users' specific troubles, and also with their pleasant experiences. The book was awarded a prize of the Czech Government Committee for Disabled Citizens, and Czech Radio 2 read many chapters on seven evenings in January 2004. The author narrated how he married, carried his baby in his wheelchair, studied law, theory of art and developed informative contacts of the Czech Polio Association and the Czech League of Wheelchair Users with foreign partners including the GINI, now Post-Polio Health International, informing Czech Polios on its deserved activity.
In some chapters he depicted his experiences as a delegate at the Independence Congress in Vancouver and the World Congress of Rehabilitation International in Nairobi in 1992. He wrote also about his interest in modern African art and how he gave lectures to university students from his wheelchair and how Czech television documented it.
The trilogy's last tome, VYSINUTY SENIOR (Aberrant Senior, 2003), narrates the differences of a senior with late effects of polio and – in spite of them – about his many possibilities even after 75 years of age, e.g. surfing and researching on internet, further adventures in an power wheelchair, literary activity in the world of unlimited fantasy and a frivolous, lightminded philosophy.
In Memoriam: Ira Holland (1939-2004)
On March 16, 2004, Ira Holland died in his own home with his own personal assistants around him. Ira is survived by his family of friends that includes Maria A. Manrique, a person who played a significant role in his life for more than 20 years; Ed Litcher, who became more of a brother than a friend; Margo and John, friends who shared the 1960s and the years beyond; Michael, who gave good counsel, even when he didn't listen; his personal assistants – Ibeth, Susana, Tamara – and many others; each member of his family that he was close to; and all of the physicians, associates, and fellow disabled people with whom he worked. As a colleague and friend wrote upon hearing the news, "We are all a little more alone now."
Ed Litcher said, "The lessons we can draw from Ira's life will depend upon the parts we see. He was a disabled man living and loving in the community. He was an advocate who cared about the independence and empowerment of people with disabilities. He was a friend, a neighbor, and a mentor to many, but I think that the basic lesson we can all draw from his life is that life is to be lived. Find your path and attack. As Ira himself said, 'All things are possible.' "
Ira bequethed $15,000 to IVUN "solely to disseminate information about portable ventilators."
Gary McPherson Named to Order of Canada
Gary McPherson (see update above), ventilator user and polio survivor, recently became a member of the Order of Canada, the country's highest honor for lifetime achievement.
McPherson, a longtime advocate for people with disabilities, currently spearheads a campaign to raise $33 million for a new Steadward Centre at the University of Alberta to sponsor more facilities and research for disabled athletes. He is also encouraging the use of technology to help Canada's elderly population.
McPherson's self-help book, With Every Breath I Take, was published in 2000. "I would never have been able to be as involved in the community and the country as I am if I hadn't been able to take care of my health," says McPherson. (www.garymcpherson.com)
Gary's biography – Rolling On: The Story of the Amazing Gary McPherson (ISBN 0-88864-405-1), written by Gerald Hankins and published by The University of Alberta Press – was recently introduced. Click here for more information.