Ventilator-Assisted Living

Fall 2004, Vol. 18, No. 3

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Japanese Ventilator Users Network's Successful Symposia

Joan L. Headley, Executive Director, IVUN, Saint Louis, Missouri (director@post-polio.org)

Kimiyo SatoI first met Kimiyo Sato from Sapporo City, Hokkaido, Japan, in Saint Louis, Missouri, in 1997 at our Seventh International Post-Polio and Independent Living Conference. She presented her experiences using a ventilator 24-hours a day via a tracheostomy due to muscular dystrophy. Kimiyo spent the first 20 years of her life in a hospital, but successfully moved to an apartment in 1990.

The second time I met Kimiyo was in the Sapporo Airport in June 2004. She and members of her talented staff greeted me and ventilator user Audrey King, Toronto, Canada, who came with her friends and attendants Martha Lawrence and George Kokuryo, after our long 12-hour flights from North America.

Kimiyo, now the executive director of the Sapporo Center for Independent Living and the Japanese Ventilator Users Network (JVUN), was fulfilling a dream of organizing a conference to educate persons involved in Japan's disability movement, the medical and welfare specialists, and the general public in Japan. She wanted to raise awareness about the need for improved independent living for ventilator users. (In 2001, the Japanese Ministry of Health, Labor, and Welfare estimated there are 10,400 ventilator users.) JVUN also invited ventilator user Adolf Ratzka, PhD, from Sweden, and pulmonologist E.A. "Tony" Oppenheimer, MD, from Los Angeles, California.

Photo of organizers and speakers at the Sapporo meeting.JVUN organized three symposia in three different cities. We presented keynote speeches on specific topics, and then we all participated on panels with members of JVUN and advocates from several of Japan's independent living centers, the BakuBaku Club (for children who use ventilators), and the Japanese ALS Association.

Expanding the number of hours of personal assistance for ventilator users, providing more support for children with ventilators and their families, and educating the people of Japan to accept people with significant disabilities to live in the community were the major areas of concern.

Photo of Audrey KingDuring her presentation in Sapporo, Audrey King spoke about her years of travel with a ventilator to 17 countries – from luxurious places such as resort hotels in the Bermudas, Bahamas and Barbados islands to the cold and windy floor of the North Sea. As a child of an army officer posted overseas, Audrey's love of travel was ignited by the frequent relocations to other countries. In a family where responsibility and self-reliance were the norm, Audrey extended the same organizational and planning skills to travel that she applied to her education and subsequent career.

While in Tokyo, Audrey signed numerous copies of the Japanese translation of her book, There's Lint in Your Belly-button! To view the pictorial diary of the trip Audrey wrote for children with disabilities, log on to http://ablelink.org/public/audreysdiary/audreysdiary.htm.

Photo of Adolf RatzkaThe second symposium at the National Olympics Memorial Youth Center in Tokyo featured Adolf Ratzka, founder and director of the Independent Living Institute (www.independentliving.org) in Stockholm, Sweden. He stated that as a ventilator user he needs medical assistance, a barrier-free environment and personal assistance. Adolf's presentation emphasized the concepts he has written extensively about regarding personal assistance. As a tireless international advocate, he supports a system based on lifestyle, not on medical need, such as the Swedish Personal Assistance Act of 1994, that allows him choice and control. He hires, he fires, he chooses who works for him and when.

Photo of Dr. Oppenheimer speaking at Tokyo meeting.Tony Oppenheimer, MD, who spoke in each city, presented an overview of home mechanical ventilation (HMV) based on his years of experience as the director of the HMV program at the Southern California Permanente Medical Group. Dr. Oppenheimer noted who could benefit from HMV, discussed when HMV should begin, emphasized the importance of patient/physician collaboration, and encouraged the ventilator users in the audience to monitor their own breathing status by periodically using an incentive spirometer to measure vital capacity, peak flow meter to measure peak flow and peak cough flow, and, if financially possible, an oximeter to measure oxygen saturation levels in the blood.

Photo of Joan Headley speaking at Osaka meeting.In Osaka, I discussed the independent living philosophy and the importance of adhering to it when meeting the needs of home mechanical ventilator users. Independent living does not mean "doing everything by oneself," but it does require that ventilator users be involved in all decisions that affect their lives.

By reviewing the stages of being a ventilator user – facing the situation and learning the life – I commented on the importance of personal choice, of connecting with knowledgeable health professionals and related services, and of finding peer support and personal assistance.

I concluded by encouraging all to "live the life" and not be afraid to seek experiences that make life, with or without disability, complete. As Mark Twain said, "Keep away from people who try to belittle your ambitions. Small people always do that, but the really great make you feel that you, too, can become great."

Photo of meeting in OsakaKimiyo's dream was fulfilled because more than 1,000 people attended the three symposia. Many activities were videotaped and JVUN has produced a tape that will be used to further educate the community on living life with a ventilator outside an institution.

For more information, contact:

JVUN, New Nango San Haitsu 1F, Minami 2-2, Nango-dori 14 Chome, Shiroishi-Ku, Sapporo-City, Hokkaido 003-0022, Japan (info@jvun.org, www.jvun.org).


They helped make it happen

Makoto Yamamoto and Junko Konno (right)Makoto Yamamoto, the liaison with the guest speakers and the translator of all conference materials, with Junko Konno, Vice President of CIL Sapporo.

Naoki OkamotoNaoki Okamoto, the organizer of the symposia program.

photo of Takahiro Hanada

 

 

 

Takahiro Hanada, Vice-Director of JVUN, who uses a ventilator 24-hours-a-day via a tracheostomy. JVUN has published his story, "Cannula is like a pierced earring" (available from JVUN).

photo of Naohito Tomita

 

Naohito Tomita, JVUN staff member who uses BiPAP at night because of muscular dystrophy.

 

 

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