30th November 1998
CONFERENCE UPDATE

7th International Conference on Home Ventilation

Dear IVUN Friends:

We and our fellow conference planners of "Noninvasive ventilation: across the spectrum from critical care to home care" in Orlando next March hope to attract many ventilator users to help educate health professionals on the validity and efficacy of longterm mechanical ventilation at home. It is extremely important for them to see how people who use ventilators live at home and work in the community and a splendid opportunity for them to interact with ventilator users and their caregivers and attendants. Financial constraints severely limited the number of ventilator users we were able to invite as speakers. It has been suggested that ventilator users be invited to present poster sessions during the meeting. This might also be a way to raise funds to attend: a ventilator user could approach local organizations and groups with a request to them to sponsor a ventilator users poster session.

For those of you unfamiliar with poster sessions, they are common at scientific and medical meetings as a way to invite many more people than just the speakers to present research or programs. Sheets of paper with the authors name, hospital or organization, topic heading, and graphs or charts of studies or experiments are posted on bulletin boards. At designated times, the authors of the posters are present to meet with people to discuss their work and research with interested colleagues.

For our purposes, the poster can be as basic as a short autobiography with your name, diagnosis, methods of ventilation used, caregiver/attendant care arrangement, photographs of you working or playing or going to school or travelling, etc.

If you are interested in the possibility of presenting a poster session about your life as a ventilator user, please respond to Judith Fischer, 714/761-4503, or JFisc48232@aol.com as soon as possible.

We look forward to seeing you in Orlando,
Judith R. Fischer, MSLS
Editor, IVUN News

For updated information on this conference see Conference Card #0004 in our World-Wide Conference and Seminar Diary

28th November 1998
Post-Polio Syndrome Highlighted by UK Medical Professional Press

The last few weeks have seen two substantial and authoritative articles on Post-Polio Syndrome published in the UK Medical Press, both directed at medical professionals in the primary care sector. This is especially good news for UK polio survivors as it adds a welcome boost to the ongoing process of increasing UK General Practitioners' awareness of post-polio conditions. Both articles are now available in the Lincolnshire Post-Polio Library.

The first article, "Poliomyelitis: New Problems From An Old Infection" by Dr. John Shneerson, Director of the Post-poliomyelitis Unit and the Respiratory Support and Sleep Centre at Papworth Hospital, was published towards the end of October. It appeared in The National Association of Fundholding Practices Annual Review Official Yearbook 1998 . The Association in question is now called The National Association of Primary Care. The 404 page Yearbook was circulated to 2,500 fundholding practices in the United Kingdom.

UPDATE: The full text article "Poliomyelitis: New Problems From An Old Infection" is now available in the Lincolnshire Post-Polio Library.

The second article, "Unusual Cases: Postpolio syndrome" by Dr. Paul Ballinger, a General Practitioner, appeared in the 4th November issue of Update, The Journal of Continuing Education For General Practitioners. According to the Audit Bureau of Circulations, the 20 May 98 issue of Update was distributed to 32,457 subscribers under Controlled Circulation Terms of Control which offers free subscription to "Full time general practitioners and vocational trainees in the national health service and clinical tutors in post-graduate centres and FHSA general managers and doctors".

UPDATE: The full text article "Unusual Cases: Postpolio syndrome" is now available in the Lincolnshire Post-Polio Library.

References:

13th November 1998
SCIENTIST AT WORK / Dr. Nancy Frick
A First-Person Study of Polio's Painful Legacy
New York Times 10th November 1998

"Dr. Nancy Frick, the world's foremost experts on the long-term psychological effects of childhood polio, says she has a classic Type-A personality: driven to succeed, often to the point of exhaustion, and unduly afraid of failure."

So begins the article written by Holcomb B. Noble in the 10th November issue of the New York Times. The article continues with a biography of Dr. Nancy Frick set against the backdrop and aftermath of the polio epidemics.

"Dr. Frick, who is the director of Harvest Center, a health and disabilities research group in Hackensack, N.J., was one of 1.63 million Americans struck by polio during the epidemics of the late 1940's, 50's and early 60's. She is also one of the estimated 440,000 who have experienced severe effects of the disease decades after they thought they had conquered it."

In the article Dr. Frick recounts her personal memories of the onset of polio.

"Dr. Frick's experiences with the harshness of the disease and the brutality of some of the treatments, and her long-term psychological reaction to both, are central to a new understanding of polio and its consequences. Her most vivid memory of having polio is of being carried off a bus, a very sick 6-year-old, after visiting relatives in Michigan in the summer of 1949. She was placed on the living-room sofa at her family's farm in Geneva, Ohio, and then could not move."

Following further recollections of her experiences at that time we move on to the return of new symptoms.

"Then in 1982, 33 years after the initial attack, spasms of pain shot through her left leg as she drove to work. The pain, along with increasing fatigue and weakness, grew worse, but her doctors failed to find the cause.

Dr. Frick did not make the connection between the attack and her childhood polio until two years later, when she sought treatment from Dr. Richard L. Bruno, and they began talking about her past. Dr. Bruno was studying the effects of disease on the autonomic nervous system at the College of Physicians and Surgeons, Columbia-Presbyterian Medical Center in New York.

As more and more former polio patients around the world started experiencing the late symptoms in the 80's, Dr. Frick began a research collaboration with Dr. Bruno, now director of the Post-Polio Institute at Englewood Hospital and Medical Center in New Jersey and chairman of the International Post-Polio Task Force.

An important piece of the puzzle of physiology behind post-polio syndrome was supplied last year in a report by a Canadian scientist. Dr. Alan J. McComas, a neurologist at McMaster University in Hamilton, Ontario, found that polio survivors lose motor neurons in the spine at a higher rate because of early damage caused by the polio virus."

The article goes on to describe in more detail the physiological background and also Dr. Frick's theories regarding the psychological effects of childhood polio. The latter strike a chord in some polio survivors although by no means all. While there may be some dispute from individual polio survivors regarding the emphasis given to the "emotional abuse" associated with childhood polio and the suggestion that "physical abuse" was common (I remember only great kindness on the part of Doctors and Nursing Staff), that both occured is evidenced by numerous accounts. Moreover, any such dispute neither detracts nor diminishes the quality and critical importance of the advice given to polio survivors by Dr's Frick and Bruno.

But Dr. Bruno says it is essential that post-polio patients slow down and conserve their strength and energy. This is the opposite tack of the rigorous muscle strengthening patients were put through years ago.

Taking Dr. Bruno's advice, Dr. Frick has been able to control her pain, alternating work and rest and using a motorized wheelchair, though she continues to battle fatigue. She rests in the morning and then, from her home office, she counsels other polio survivors, conducts consciousness-raising seminars, consults with corporations on implementing the Americans With Disabilities Act, and works on her research and writing.

Another respected school of physical therapy has completed a number of preliminary studies suggesting that nonfatiguing, resistance-weight programs can rebuild some of the muscle strength destroyed by polio, and neurobiologists believe they may one day be able to stimulate new neuron growth.

Dr. Frick, however, warns of raising false hopes, because post-polio patients so often continue to deny their condition and push themselves too hard. "We were considered contaminated after polio, the AIDS kids of our generation," she said. "And because no one wants to admit to having had polio, hundreds of thousands of survivors would have nothing to do with each other, so there were no polio-survivor support groups to help recovery.

"Now they often say, 'Don't tell me to slow down. I have been very successful being this busy.' They have no intention of being whacked in the butt twice.

But the irony is that for those who do slow down, the pain subsides."

Chris Salter, LincsPPN Vice Chairman and Web Administrator.

The complete text of the article is available at the New York Times Web Site http://www.nytimes.com/ at the following location:
http://www.nytimes.com/library/national/science/111098sci-frick.html.
You need to be registered with the New York Times but registration is free. For your convenience, here is the registration page, http://verify.nytimes.com/subscribe/sub-bin/new_sub.cgi

Articles by both Dr. Bruno and Dr. Frick can be found in our Lincolnshire Post-Polio Library. See the catalogues for:
Bruno, Richard L., Ph.D.
Frick, Nancy M., M.Div, Lh.D.

See also our Directory entries for:
The Post-Polio Institute, Englewood (NJ) Hospital and Medical Center Dr. Bruno
The Harvest Center Drs. Bruno and Frick