Post Polio Syndrome typically refers to problems which emerge many years after contracting the original virus, and may include symptoms such as: fatigue, pains in muscles and joints, and new muscle weakness. Muscle weakness can include the respiratory and bulbar system ( head and neck) with a subsequent affect on voice and swallowing. I discussed some of these changes with attendees, advising they report any decline in voice and swallowing to their physician, and request a consult with a qualified speech-language pathologist for further evaluation and instruction in exercises or techniques which may reduce symptom impact.
I can remember, lining up outside the local high school when I was a child to receive my sugar cube of prevention against the polio virus, but my first introduction to life after polio came at the age of 16, when I responded to an advertisement in the newspaper to care for a disabled woman. Susan Armbrecht was in her mid 20's when I met her, but she was no larger than the size of a child, her skeletal muscles having been halted in growth at the age of 6yrs when she contracted the polio virus. The first night of sleep at Susan's house, resulted in no sleep, as I listened to the "woosh" of her iron lung, and responded to her periodic calling me for a position change. I lay there that night, strategizing about how I could ease out of this newly formed agreement. But, after a few more weekends with Susan, her spirit and enthusiasm for life had overtaken me, and we began a life-long friendship, until her passing a couple of years ago, just shy of her 70th birthday. It was through Susan that I had the honor of meeting Gini Laurie, the founder of the Toomey Gazette, later named the Rehabilitation Gazette, and predecessor of Post Polio Health International. Gini is also credited as being one of the originators of the Independent Living Movement, a movement which raised consciousness about what it means to be a person living with a disability, helping to banish words such as: "crippled", and fostering the notion that a person living with a disability is best positioned to inform the non-disabled about what they need to live life fully.
Gini Laurie also articulated what polio survivors needed saying: "it was apparent they had two vital needs: people and information. They wanted to keep [up] with each other , and wanted to share information about their lives and equipment."
This past weekend's conference affirmed that these two vital needs are still relevent and being provided for by support groups, like the one in Maine. I hope that I contributed to the participant's learning needs with the information and education I provided, but, as is often the case anymore, I feel that I left the meeting also enriched by my interraction with the group members.
Since returning home, I have been thinking alot about two life-long friends affected by polio, Susan and my friend Mickie McGraw, a nationally known art therapist, both who lived and live life with zest. I am thinking that their zest for life is also a result of having survived a catastrophic illness, because I heard it reflected in the voices and stories from a few of Saturday's attendees. Howard, who despite loss of neck and shoulder muscles on the right side of his body, went on to join the military, and proudly told me how he managed to carry his rifle. Reggie whose big heart was evident and practically bursting our of his shirt as he introduced a Maine legislator and her proclamation.
Many of the people in attendance have compensated most of their lives for weakness or muscle loss in one part of their body or another. But what I did not hear was one murmur of self-pity. Maybe it was the post-war timing of the illness or the fact that many were young children, but all seemed to have just gotten on with their lives. The effect, and now late effect of polio is certainly relevent, but for most it seems to have been integrated as a part of their descriptive adjectives, like tall or short, but not the defining one.
The motto of the polio surviviors is: "we're still here". I felt and saw that clearly on Saturday. Not only are they here, but they give witness to the fact that people can have full lives, lives which might include varying levels of disability, but they do not need to be defined by it.
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