56 WOODLEE LANE

GRAND ISLAND, NY 14072

THE NEXT MEETING OF THE POLIO SURVIVORS SUPPORT GROUP OF WNY WILL BE HELD AT ST. LUKES LUTHERAN CHURCH, 900 MARYVALE DR. AT UNION ROAD ON WEDNESDAY,

JUNE 19, 2002 AT 7:15 PM

Attending our April 17^th meeting were: Don O’Connor, Susan Calvaneso, Dave Hamilton, Pat Doeing, Susie and Bud Foster, Barb and Bill Woodworth, Gerry and Emilie Willman, Pat Smietana, Gus and Jean Arndt and Henry Maciejewski.

At this meeting we had a guest speaker, Julie Buono a Physical Therapist from Erie County Medical Center (ECMC). She spoke about their evaluation at the Medical Center for PPS. The evaluation consists of the patient’s history, when contacted polio originally, what age. She discussed PPS symptoms and how some people are overachievers. It is beneficial to exercise, but not to fatigue level – to get some rest and start over. Do some cardiovascular exercise under the supervision of a physical therapist, or have them set you up with a program at home and to monitor level of exercise NOT no pain – no gain theory, but have to do some exercise to continue the use of muscles. Julie mentioned that there hasn’t been any new research on exercise recently. She also gave us a list of articles that can be picked up at a public or medical library in the area.

Management of postpolio syndrome. Thorsteinsson, G. Mayo Clinic Proceedings 1997 Jul; 72 (7); 627-38.

Post-polio syndrome: pathophysiology and clinical management. Gawne, A.C. Critical Reviews in Physical and Rehabilitation Medicine 1995; 7 (2): 147-88.

Clinical decision making in the management of the late sequelae of poliomyelitis. Dean, E. Physical Therapy 1991 Oct; 71: 752-61.

I received e-mail from Debbie in Tennessee, which I forwarded on to Don for his input to answer her questions regarding post polio syndrome. He gave her two doctors in her local area for her to communicate with: Robert W. Greene, Jr. and Margaret Todd, as handling PPS cases.

We received e-mail from Ana Rubin regarding free IRCP newsletters. To be put on their mailing list, following is the web site and mailing site to request this information: www.polioclinic.org and hit “sign up for our free newsletter” or write to:

Anna Rubin,

Education and Outreach Coordinator

International Rehabilitation Center for Polio

Spaulding-Framingham Center for Polio

570 Worcester Road

Framingham, MA 01702

THE POLIO PARADOX, By Richard L. Bruno, HD, PhD

Warner Books, 2002

A Book review by C. Donald O’Connor for the newsletter of the Polio Survivors Support Group of WNY

When I started reading this book I expected it would be another manual of suggestions for living with the pain and fatigue of Post Polio Syndrome (which Dr. Bruno insists on calling Post Polio Sequelae). He does do that in about 50% of its pages, although I prefer the approach and presentation of Dr. Julie K. Silver in her fine book, Post Polio Syndrome, which I reviewed in a previous newsletter.

While reading Dr. Bruno's book, I found myself being repeatedly irritated by his presentation. It is not for lack of writing skills, as the book is very well written. Rather, it is his premises, apparently gleaned from responses to questionnaires to Polio Survivors and to interviews with patients at his Post-Polio Institute.

He notes that most polio survivors are Type A personalities, and that having this trait aggravates their Post Polio complications and makes them unwilling to accept help in coping with them. This is a situation of which all of us who deal with Polio Survivors are acutely aware. More than once, I have urged a polio survivor to participate in our support group and been challenged with, Support group? What makes you think I need support or, If you send any of your stupid newsletters to my house, I'll sue you. All my neighbors think it was a football injury.

Dr. Bruno devotes an entire chapter, entitled The Pest House, to inconsiderate or even sadistic and criminal abuse of Polio patients by doctors and staff during the original polio hospitalization. He suggests that such abuse was a precipitating cause of the development of Type A personality. Perhaps because I was 24 years old when I contracted polio, I was acutely aware of the terrible risks that were taken by the people who looked after me in the hospital when I could do nothing for myself. It required enormous courage and love of people to volunteer to work in those contagious disease wards when paralysis or even death might be the reward for their risk. We polio survivors should thank God for those workers, doctors and staff alike and be skeptical of the accounts of those who were often very young children when stricken, especially if their responses were prompted by a questionnaire asking for a description of any such abuse. My own hospital care was superb, and the few survivors I have talked with since I finished reading the Pest House chapter had no complaints about their polio hospitalizations.

I know what initiated my Type A traits. When I was about to be discharged from Seattle's Northwest Rehabilitation Center (The same facility that was featured in Kathryn Black's excellent book, In the Shadow of Polio), my boss and good friend told me proudly that since I could never perform my duties as an Assistant United States Attorney in a wheelchair, he had arranged for me to retire on a job related disability. My protests fell on deaf ears, because I shouldn't have to struggle to disprove what was obvious, that I couldn't do the job. I raised hell with the help of other friends and the March of Dimes until the Department of Justice reinstated me, and thereafter until 33 years later when I retired, I made it certain that my work was 100% perfect.

Dr. Bruno cautions against what he terms the Chinese menu approach (i.e. picking and choosing what you like and rejecting what you don’t) to his institute’s post polio treatment program, which includes diet, physical therapy, physiatrist care and behavior modification. The last item includes help from psychologists to get the patients off the Type A autopilot. However it is that we became so driven, that is what we are, our personality. I have no problem with changes of life style to make tasks easier to perform. Dr. Bruno cites the benefits of planning activities so you don’t wake up and go to the bathroom, then go downstairs for coffee, then upstairs to dress and shave, etc. He also suggests spacing out arduous chores so that you aren’t doing two or more on the same day. I also have no quarrel with the need to willingly accept and devices such as canes, braces, wheelchairs, that can lighten the burden on overused nerves and muscles. What I have reservations about is the possibility that Dr. Bruno’s program seeks to change his patients from outgoing and generous perfectionists who can always be counted on, into self centered whiners who accomplish little.

While reading about Dr. Bruno’s treatment program, I found myself imagining Dr. Bruno traveling back in time to advise another Polio Survivor, the advice going something like this: You know, Franklin, you’ve survived a terrible disease that destroyed many of your neurons and severely damaged many of the others. You really should protect your remaining neurons by cutting back on your activities and stop staying up all hours of the night stressing yourself out trying to end the Great Depression and worrying about totalitarian s.o.b. dictators half a world away. You are a wealthy man and you can afford to go to Florida and enjoy your golden years on a beach.. Let Alf Landon or Wendell Wilkie do all that president stuff. At other times, I imagine Dr. Bruno urging President Roosevelt just to ease up on his job. Order his aides to never awaken him between 10 p.m. and 10 a.m. even if the Japanese bomb Pearl Harbor during those hours. Roosevelt did what he did because that was the way he did things, and if he had been told that continuing with his arduous his lifestyle would destroy his remaining neurons and perhaps kill him prematurely, I believe he would not have changed what he was doing.

I look back with satisfaction on my own work as a trial attorney and with the Jaycees, and as a Little League baseball coach, and even though my many nights and weekends preparing witnesses, drafting briefs, researching legal issues etc. may have contributed to my current physical condition, there is very little I would do differently. I don’t want anyone, even a psychologist, trying to turn me into someone other than myself.

The final thing that kept me from enjoying an otherwise good book is perhaps minor, but nevertheless an irritant. How can anyone write a 300, plus, page book about post polio conditions, their discovery and treatment and not mention Lauro Halstead. The oversight is so pronounced that Halstead is not even included in his list of 34 prominent Americans who are Polio Survivors.

I guess I do recommend the book, but I didn’t like it.

At the June 19th meeting we will once again show the movie “Five Little Pennies” with Danny Kaye in the starring role. Many of us have never seen this movie, which has a lot to do with polio.

Once again we will have our summer picnic at the Hatch Restaurant, Erie Basin Marina on Wednesday, July 17^th at 4:00 PM. Hope more people can make it this year.

PLEASE LET US KNOW IF YOU CHANGE YOUR ADDRESS

Has everyone paid their dues? If not, please send to Susie Foster, 74 Marilyn Dr., Cheektowaga, NY 14225.

If anyone has anything – news, information, etc. that they would like to be put into the next newsletter, please contact me by e-mail at scalvaneso@hotmail.com, and I would be happy to insert the information. Please expect the next newsletter somewhere around the beginning of September 2002.

Susan M. Calvaneso

Recording Secretary

June 1, 2002