New York

Thursday 15 May 2008

Dr Margaret E Backman (Peggy), author of “The Post-Polio Experience: Psychological Insights and Coping Strategies for Polio Survivors and Their Families” was our lunch date for today. It’s a very civilised way of conducting a meeting, I must say. Peggy and I had been emailing each other for some time, as she assisted me in sorting out various aspects of my trip to NY. She was determined to give us a gastronomical experience and had proposed a number of eateries before we settled on a ‘Soul Food’ experience in Harlem. This was similar to the ‘Southern Cookin’ experience we‘d had in Warm Spring, Georgia, but fry-avoidable. I had beef rib with 2 ‘sides’ consisting of collard greens and candied yams. I realized it was the second or third time I’d had collard greens and I don’t mind them at all. However, the candied yams dish was a one time experience I don’t think I’ll repeat. Of course, what Soul Food experience would be complete without corn bread?

After yesterday’s meeting with Susan Fish, I realized taping the discussion in a restaurant wasn’t going to work, so Peggy offered to come back to our hotel after lunch.

As indicated in one of her bio’s: “Margaret Backman, PhD, is a Clinical Psychologist [specializing in Health Psychology] in private practice in New York City, who has been working with survivors of polio for many years, providing supportive psychotherapy, lecturing and writing articles on Post Polio Syndrome. Dr. Backman’s most recent book, "The Post-Polio Experience" provides psychological insights and coping strategies for polio survivors and their families.” To purchase online, go to: www.amazon.com/Post-Polio-Experience-Psychological-Strategies-Survivors/dp/0595386393

Peggy was saying her involvement with post-polio really started in the early to mid 80’s. She had a female client who came to see her with an absolute all kinds of information she had been able to find on post-polio, which was surprising given the limited knowledge of the day. Peggy had already been working with people who had various other illnesses such as kidney problems, cancer, etc. and had written a book: “Psychology of the Physically Ill Patient” directed at clinicians who were working with people with medical problems. Her reason for writing “The Post-Polio Experience” was almost as an ongoing legacy for when she stops practicing. Peggy felt that she had so much knowledge stored up through what she had learned from her patients, that it was important not to lose it, especially for those polio survivors who are yet to experience post-polio.

In one of the chapters of her book, Peggy explains why she doesn’t subscribe to the theory of polio survivors having a particular personality ‘type’. She believes the sample may be biased due to the fact that it is mainly the more assertive and/or confident polio survivor who has been seeking information and assistance for their PPS. As these people are presenting with the issues, these are the ‘personalities’ that have been noted.

Many people who contact both Peggy and Susan Fish (because they are listed in Post-Polio Health International’s Directory for New York), are actually looking for a medical doctor. Finding one who understands about post polio appears to be as much of a problem in a large city like New York and, for that matter, throughout all parts of the USA we’ve visited, as it is in Australia. The message keeps coming through that if your doctor doesn’t seem to want to listen or find out more about post polio, keep looking until you find one who does. That’s all well and good in large areas, but not so easy in the smaller country towns.

Peggy suggested providing the doctor with a small brochure – such as the one developed by the Polio Network Victoria – so they don’t feel swamped with information but can use it to research further. She also believes it’s a good idea to have a list of questions to ask so the patient can feel more focussed during the appointment, thereby not wasting either their or the doctor’s time.

On the subject of a polio survivor being referred by their doctor for psychotherapy, Peggy felt that it was important that the patient understand the ‘team work’ nature of this type of referral as opposed to them thinking that the doctor had “given up on them” or that it was “all in their head”. We went on to talk about the role of the family and ‘significant others’ in supporting the polio survivor to cope with progressive changes in lifestyle – as well as how dealing with post polio impacts on the lives of people around them. Qualitative changes Peggy has noted in her consultations with polio survivors tend to be more and more about the ageing process and the range of fears this raises for people.

In her practice, Peggy states that the sessions aren’t all about the polio but that people have whole lives which may include problems not connected to the polio at all. Then, if you subscribe to stress factors impacting on inflammation thereby exacerbating PPS symptoms, as per the theory presented by Dr Marcia Falconer and Prof Edward Bollenbach, any ‘stressors’ should really be addressed in order to relieve these symptoms. (More on this theory after visiting with Marcia on 25 May.)

In all these cases, it is helpful to discuss the issues with a psychologist who understands. ParaQuad Victoria actually provides free counselling sessions for polio survivors but it’s interesting how few take it up.

However, tomorrow I am going to treat myself to a bit of ‘de-stressing’ with a couple of hours at a day spa while Jill goes gallivanting ‘Downtown’ on a sightseeing bus (been there, done that . . .)