How Post Polio Syndrome Caught up with Mary

Polio  is a disease of  the past, and the vaccine is close to eliminating the threat worldwide.  But for those who contracted the disease in the epidemics of  the 1950’s,  a new condition – Post Polio Syndrome continues to affect it’s survivors.

Mary was two when she contracted polio, in 1954. 

Mary as a child, at different ages. Picture provided by Mary, and posted with her permission.

She eloquently talks about her experience in a post on polioplace:

“When I was released from the hospital after about six weeks, I had to wear two long leg braces. This is a picture of me learning to walk with parallel bars my dad had a friend build for me. They were set up in the middle of our living room for two months. I am told I practiced a couple times a day. My two older sisters took full advantage of them. My sister, Marsha, is in the background doing flips on the bars! That probably made it more of a game for me."

Mary with her braces. Picture provided by Mary, and posted with her permission.

"Crutches were the next phase, for another two months. Then one brace broke. So, we discovered that I didn't need that one. I wore one brace and walked without crutches from then on.”

 Mary refused to let polio slow her down. Her dad was a lawyer, her mom a homemaker and she had two older sisters.  Mary went through the regular public schools, learned to swim, and rode a bicycle. She graduated from college, and met her husband, a loving and creative man. She worked as a Montessori teacher in preschool and elementary private schools, riding a bicycle to and from work!

Then post-polio syndrome caught up with her. Mary says: “After about five years, I was becoming overly fatigued and was having back and leg pain.  I assumed I was just needing a break from teaching, so I found a job with the telephone company as a service representative.  It was a desk job, that actually got more computerized as the years went by, and I had good benefits. My husband stayed at home caring for our daughters.”

As her girls reached school age and were about to be out of the house for longer periods of time, Mary and her husband were looking forward to having two salaries again. But it was not to be.  Mary’s condition was getting worse. Mary says:

“When I started again to have more pain and fatigue, one of my sisters who lived in St. Louis gave me some information about an organization there investigating other polio survivors with similar complaints.  The group had been keeping vent users and those in in iron lungs connected since the polio outbreaks in the 50's.  This was the 1980's.  Apparently our bodies, damaged from the original polio, had compensated for our neuron losses and now were breaking down with overuse.  It wasn't polio again, just progressive nerve issues.  So I found a clinic where I was diagnosed with Post Polio Syndrome and had to quit working on disability in 1988, when I was only 33 years old.”

Mary’s husband was having trouble finding a job as a blue-collar worker after all these years. And Mary herself, an active, creative woman, had no intention to be idle, motoric problems or not.  Mary says: “Since my legs were originally affected, I could still do a lot of crafts with my hands. We made Native American crafts - gourds, beading, leather work and travelled to sell at Pow Wows, bike rallies, trade days, etc. I have always done needlework, quilting, and really loved loom beading. (It seems that the majority of polio survivors are Type A personalities - always busy somehow).” Things became more challenging as time went by: “Post Polio brought canes, crutches, manual wheelchair, electric scooter, and now a full time power wheelchair for me over the years.  With each change in my physical condition, I had to psychologically deal with another loss.” 

Mary more currently. Picture provided by Mary, and posted with her permission.

Her crafts kept her busy and engaged, but “now even my arms are weakening. So crafting is out now, too.”

She appreciates her husband’s devotion and constant loyalty, through change after change: “He married me with my leg brace, and stayed with me as PPS put me in a wheelchair.  Some of us found very supportive spouses.  Others, I have learned from my on line support groups, had spouses who left as soon as Post Polio began affecting them”.

In 2005, she lost this wonderful man who supported her through all the changes. But she was not alone: her younger daughter, just graduating from college, moved in to be with her, teaching Spanish in a nearby high school. Then, her daughter found a wheelchair accessible house, and the two moved in. Last year, that daughter married and moved out, though she and her new husband live nearby and Mary sees them often; but Mary’s older daughter, widowed and mother to a child, moved into the wheelchair accessible house to help Mary out. The family is very close.

Mary is not the type to brood: in spite of the limits her body sets, she stays active and finds things to do. She is active online in the polio survivors forum, she reads, she watches TV. She describes her online involvement: “The Internet has been a wonderful way for those of us who can't physically go out much anymore to connect and feel part of society.  Those of us who were more affected will give tips to the survivors who are now experiencing weakness and pain.  As they need braces and wheelchairs and rest, we can give the support, if only through on line chats.”

Mary concludes: “There are approximately one million polio survivors in the US today.  Many recovered with little obvious disability and are now needing braces and wheelchairs.  It is important for people to be aware that polio continues. I guess I want people questioning vaccinations to be aware that the long-term effects of polio are life changing over and over again.  There are some people who actually contracted polio from the vaccine (very rare, but it does happen) who still believe the vaccine is best for everyone to stop the spread of polio.”

Acknowledgements: I am grateful to Allison Hagood for introducing me to Mary, to Mary herself for sharing her story and helping prepare it, and to Alice Warning Wasney for commenting on a draft. 
More information about post-polio can be found at: http://post-polio.org