Saturday, May 17, 2008

Colorado Post-Polio Connections: An Educational Conference

We have so many terrific alliances through our work with Capabilities! On May 10, 2008, we sponsored an educational conference hosted by Easter Seals Colorado and Colorado Post-Polio Connections. What a day I had meeting people from all parts of Colorado and nearby states who joined each other for seminars, conversation and sharing.

Post-polio Syndrome further accelerates the damage done to the nerves during the aging process, sometimes 30 to 40 later, for those who suffered with polio myleitis. The results vary, leaving some individuals severely paralyzed. What is most remarkable is that PPS also strikes those who had experienced full recovery from the initial polio viral illness. One woman told me that it was only a few years ago that she experienced some swelling in her foot, which was finally diagnosed as PPS. She now rides in a scooter whenever she is out of her home. PPS is not contagious as there is no recurrence of the viral infection itself.

Polio raged in the U.S. in the first half of the 1900s. Jonas Salk developed the first vaccine in 1955. Polio has been virtually eliminated in the western hemisphere, but still exists in a handful of countries (Afghanistan, Egypt, India, Niger, Nigeria, and Pakistan).

I was most impressed listening to the stories of folks who contracted polio as children in the 40s and 50s, primarily. Several spoke to the crowd about their treatments at Warm Springs, GA, a rehabilitation center made famous by Franklin Roosevelt, among others. Carol Beebe and Dr. Marny Eulberg, a Colorado specialist treating those with post-polio, and who herself had polio and has PPS, narrated a video of Warm Springs. Carol had photos from when she was 5 years old and a patient there. I recalled being a small child when the word went around our neighborhood that one of the nearby kids had contracted polio. My memories are that the adults talked a lot about protecting all of us, and about that child, who had to spend time in an iron lung. I asked some of the folks I was lunching with at the conference about iron lungs. No one at my table spent time in one, but several also had memories of the children in their ward living through that machine that compressed the chest to assist with the breathing process as nerve damage affected the chest muscles so critical for breathing.

Dr. Eulberg reviewed the findings of a study released from the Mayo Clinic in 2005 that has stirred controversy among the population with post polio syndrome. After a 15 year study of about 50 individuals with PPS (15 of whom died through the course of the study), the Mayo Clinic determined that the decline in those individuals was on average about 3% per year, roughly the same as the general population over a similar period of time. Dr. Eulberg disagrees firmly with the findings based on her own case and those of the dozens she treats. She says the sample was not big enough and the muscle groups tested were insufficient. By focusing on the big toe and the thumb only, she believes the study did not capture the key muscles groups affected by polio for a great number of those who had the infection years ago. I was fascinated to hear to her analysis, followed by the stories of those who spoke about their own physical decline over that same period of time.
Among the Capabilities products that attracted the most interest for those attending the conference, there were three that were a huge hit. One woman bought the Sit Disc air cushion as soon as the conference started so she could be comfortable sitting for so many hours. Her table mate was so impressed she came out at a break and wanted one, too. They both reported significant comfort as I checked in with them. Others gathered around to check it out for themselves. The Book Peeramid also drew attention. For those spending lots of time in a wheelchair or sitting because of their condition, this book pillow rests comfortably on the lap (or against the knees if reading in bed) and provides a perfect place to rest the book. There is even a tassel bookmark to hold your place. And, what would life be without the amazing reacher. We featured the PikStik Reacher at the conference with the pivoting head and locking mechanism. It comes in different lengths, too, including a small one that works perfectly when seated. One gentleman loved the extra tall one so he could finally reach the cereal box at home!

The session that caused lots of interest and affection featured Freedom Dogs, specially trained to help those with disabilities. One of the participants spoke about how much independence she now has as a result. She came to Colorado from Florida so had a lot of fear about maneuvering in snow and ice. Her Freedom Dog stays very close to her affected leg and provides safety for her as they both now have made their way through many a winter together. A trainer arrived with a dog at the early stages of general training. That dog still had a lot of work to do, but delighted the crowd with his antics. I was amazed to learn that dogs can be trained to turn on the washing machine, put clothes into the machine, and take them out of the dryer. Freedom Dogs are matched to the condition of the individual and go through extensive training.

I offer my thanks to those who taught me so much and shared so many of their experiences. Their feedback and interest in the many products we provide at Capabilities help us find the right tools for independence, so critical to folks with disabilities.

If you or someone you know would like more information about the Colorado Post-Polio Connections support groups and events that are held throughout the year, please contact Nancy at Easter Seals Colorado at 303-233-1666 x237 or Marlene at 303-689-7669. If you were at the conference, please post your thoughts and reactions to the sessions. And, if you are a polio survivor who is now experiencing the effects of post-polio syndrome, tell us about your experiences.

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