Today was the first full day of Post-Polio Health (PHI’s) 11th Conference. There are around 200 people attending this 3 day conference, which is a bit down on previous years – but that may have something to do with the European Post-Polio Conference in Amsterdam towards the end of June, together with a couple of Polio Retreats being run in both Colorado and Alberta, Canada, later in the year.
After a quick (and cheap) breakfast of toasted bagel with cream cheese and banana (my own concoction) and cappuccino at Starbucks downstairs, I started the day with a session called “Polio’s Effects on Breathing” presented by Dr John Bach, a respiratory specialist who is based in New Jersey.
Dr Bach’s book Management of Patients with Neuromuscular Disease lays out his ideas on why he is not much of a proponent for CPap, BiPap or tracheotostomy.
While I’m on the subject of books, Joyce Ann Tepley was selling and signing copies of her book Thriving Through It – How They Do It: What It takes To Transform Trauma into Triumph. Joyce is a polio survivor who retired from a 40 year career as a clinical social worker and has dedicated the rest of her life to honouring those who thrive through adversity by telling their stories.
The second session I sat in on was Pain: It Gets Our Attention which was presented by Drs William (Bill) DeMayo and Frederick (Fred) Maynard. Bill started off with an overview of muscular/tendon vs neuropathic pain and both Bill and Fred stepped through ways of managing the various types of pain polio survivors can experience, including pain medication. Fred provided us with a list of references for further reading: Pain Problems in Post-Polios: References/Readings.
We then had a few ‘boxed lunch’ options which was an interesting concept. This consisted of a huge sandwich or roll, an enormous chewy chocolate chip cookie, a bag of potato crisps, a tiny potato salad, and a big apple. Certainly no one could complain of being left hungry.
Over the lunch break I also checked out a “Support Dog Demonstration”.
I then went to a session called “Assessment: Our Abilities” presented by Hilary Boone from the Polio Survivors Network, UK, as well as Beth Kowall (retired Occupational Therapist) and Dr Carol Vandenakker-Albanese, Clinical Professor, Department of Physical Medicine & Rehabilitation, University of California Davis. Hilary based the session on a resource she has created for polio survivors to take along to their treating health professionals called My Polio Life, which is a self-assessment patient questionnaire to assist in collating information your life as a polio survivor. Hilary also presented another useful resource: What You Need to Know About My Condition.
My final session of the day was a joint presentation on “Post-Polio Bracing” moderated by Dr Bill DeMayo with presentations from Dr Marney Eulberg, Marmaduke Loke from Dynamic Bracing Solutions, and Mike Nieder, Hanger Inc.
At the end of this very interactive session, with plenty of questions from the audience, I was approached by a couple I had met in Warm Springs in 2009. We got into a discussion about orthotics that do and don’t work and this lady passed on an excellent tip that had been suggested by the secretary of her orthotist, who she’d been seeing for a brace that wasn’t fitting particularly well. The secretary told her to rub lipstick on the part of her leg that was giving her the most trouble and that would smudge the exact spot on the brace. Armed with her lipstick marked brace, she was able to show the orthotist exactly where the problem was, he was able to smooth over that spot, and the brace fitted perfectly! How simple!
After I returned to my room to upload the presentations and photos I’d taken of the presenters, I returned to the bar to see who might be around to have dinner with. I was able to join with a lovely couple, Dr Dan and Carol Wilson from Pennsylvania. I also learned that Dan is on the Board of PHI. He is a Professor of History and did a presentation on “Passing in the Shadow of FDR: Polio Survivors, Passing, and the Negotiation of Disability”. This subject addressed the concept of polio survivors ‘passing’ for ‘normal’ in society in the years between polio infection and polio’s late effects kicking in. I know many people who would have related to the topic of this session.
I also found that I am not the only Australian at the Conference. Sydney-sider, Neena Bhandari, from India Voice is here and was presenting on the topic of an article she’d had published in BMJ in March 2014 titled Beyond Eradication: The Forgotten Polio Survivors of India. Very much worth the read, and a salient reminder that the late effects of polio will be felt by people in developing countries for many years to come.
I’m basically making my decisions on which sessions to see on a day-by-day basis. There is just SO MUCH of interest! Considering it’s 11:00 pm as I write this, maybe I should go to “A Good Night’s Sleep” as my first session choice tomorrow . . .