Shared peer advice from polio survivors about what works for them.

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News about people who have made significant contributions to the disability community.

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“Not Going Is Not an Option”

Brian Tiburzi

Jann Hartman, Seattle, Washington I grew up believing in fairy tales and loved stories that ended “happily ever after.” Even when I got polio in 1953 at almost 6 years old and spent most of that year in the hospital, I still believed that everything would work out for the best. I met my “knight in shining armor,” we got …

Childcare

Brian Tiburzi

HINTS FOR RAISING CHILDREN BY MOTHERS WHO HAD POLIO One: I had polio at 23 and was married at 25. I had one daughter and two sons. I wore a white cotton support garment with shoulder straps and laces that expanded with girth. I also wore a right leg brace. Now, I wear braces on both legs, because with time …

Pregnancy

Brian Tiburzi

Example 1: A 33-year-old lady (2011) who had polio is pregnant for the first time. She describes her acute illness and recovery and requests advice: “I had polio when I was 7 months old and was paralyzed throughout my whole body. My parents told me that they fed me using a spoon and a dropper. I could not sit up …

Guide for Children in Rural Areas

Brian Tiburzi

“Chapter 7: Polio”  in  Werner, David. Disabled Village Children: A Guide for Community Health Workers, Rehabilitation Workers, and Families. Hesperian Foundation. 2009. David Werner was a co-founder of the Hesperian Foundation. A biologist and educator by training, he has worked as a health activist for the past 40 years in village health care, community-based rehabilitation, and “Child-to-Child” health initiatives in the …

Definitions

Brian Tiburzi

Technically, post-polio syndrome is not the same condition as Post-Polio Sequelae/ the late effects of polio. Post-polio syndrome is usually considered a specific new condition. A diagnosis of exclusion is used to determine if a patient has PPS. This means if a survivor of polio is found to have osteoarthritis, for example, that is what the diagnosis will be – osteoarthritis, not PPS. Because …

Not Just Polio: My Life Story

Brian Tiburzi

Excerpts from the autobiography Not Just Polio: My Life Story of Richard Lloyd Daggett, polio survivor and ventilator user: July, 1953 My mother drove to the hospital to visit almost every afternoon and both pafarents came in the evening. I’m sure it was a difficult time for them. I was their youngest child, and I was very, very ill with bulbospinal polio, the …

The Miracle of the Singing Bunny

Brian Tiburzi

Sunny Roller Her bright blue-eyed pre-kindergarten daughter lie flaccid in a hospital bed, almost completely paralyzed from polio. Now 60 years ago, that horrifying summer polio epidemic had swooped this young family into its vile clutches, never to fully let go during their generation. Devastated, Marj, her husband, Art, and their toddling one-year old son, Scotty somehow got a ride back and …

A Sister Remembers

Brian Tiburzi

Mary Navarre, OP When Joan L. Headley, the Executive Director of the Post-Polio Health International, asked me to be on a panel of family members of polio survivors at the convention in St. Louis, I was hesitant to do so as it was, and still is, difficult to talk about my life with my sister who contracted polio at the …

Communicating with Grown Children

Brian Tiburzi

From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association. Q: As I get older and accumulate more secondary conditions, it is more difficult for me to get around. Do you have any suggestions as to how to communicate my …

Can’t Care for My Wife Like I Used to Do

Brian Tiburzi

From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association. Q: I have been my wife’s attendant for many, many years. I am getting older and can’t do what I used to do, but it is still expected of me. How …