"I had learned to ride my best friend's bike prior to my sixth birthday in 1953. I was promised a bike for my birthday but during the month before it, I came down with polio. I was in the hospital on my birthday and my parents had been given…"
"Hi Linda....I understand what your saying about expending more energy with just daily living. Today I'm fatigued because I did the weekly wash (3 loads) and cleanied the bathroom. It's very frustrating. I find that the more…"
"Thank you. I've been a part of the post polio network (limited part) for sometime. I have been seeing Dr. Ryan in Warren for a number of years but have not really gotten involved or connected with others within the network. It…"
In many ways, it's made me a stronger person with the ability to overcome adversity. As my mobility has declined, I've had to get very creative about ways to remain independent and mobile. I expend more energy living daily life and there are some activities that I just can't do.
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I had learned to ride my best friend's bike prior to my sixth birthday in 1953. I was promised a bike for my birthday but during the month before it, I came down with polio. I was in the hospital on my birthday and my parents had been given special permission to visit. I asked Dad about my bike and he told me I was not getting the bike as I was going to be getting braces. My six year old brain did not understand what was really happening. I understood that the braces were my birthday present instead of the bike. I did not understand that my legs were not going to be able to make a bike move let alone support me for walking. I was angry. The doctor had earlier let them know my progress and what the future held. I was a naive little kid.
I have wondered how others found out and what was their reaction. Was it because my age that I understood just enough to be greatly disappointed but not old enough to be able to rationalize the events? Did the younger ones not know what was happening and just accepted what happened.
Not long after I was fitted with long leg braces on both but another “unfortunate” set of misunderstandings happened. All the boys I had seen had brown braces and brown shoes; but not mine. They were white and I thought they were some girl's and not mine. The shoes looked like baby shoes and I was NOT a baby. I was not a cooperative patient during the training times. The stood me between bars in front of a mirror and I just froze in place. I was poked, prodded, pushed, and yelled at to no avail. I was propped up on crutches and learned to fall but not walk. I was stubborn too.
I was finally sent home with crutches, braces, and a “good luck” statement to my parents. Mom was very patient and did not give up. She had learned how to do the therapy at home to keep me “stretched” on the dining-room table. After the therapy time, she put me in my braces and had me stand at the table to do puzzles, coloring books, play with my trucks, and build with my wooden blocks and Lincoln Logs. As time progressed, when I asked for something, she would put just in reach and then progressed to putting it just out of reach. She “made” me shuffle a little and worked me up to taking steps to the side. With her unfailing patience and determination, I finally did something I refused to do at the hospital.
Mom made me keep the braces on and I dragged myself around to where I wanted to go. I progress to a type of crawling until Dad made a set of parallel bars out of some plumbing pipe that would fold against the dining-room wall. By the time I was seven and finally ready to start second grade in school, I was walking with my re-leathered with brown leather-work and brown shoes.
Hi Linda....I understand what your saying about expending more energy with just daily living. Today I'm fatigued because I did the weekly wash (3 loads) and cleanied the bathroom. It's very frustrating. I find that the more fatigued I become the harder it is to sleep at night whether I take a nap or not during the day. Then it becomes a cycle where normally I will "crash" within a few days and sleep for nearly all of two days. Have you found that you do this?
While I'm not using any mobility devices at this point, I certainly did in 1994-96. Then it seemed to go into a remission of sorts. But alas, it's raised it's ugly little head again and I've pulled the wheelchair out for Walmart or Lowes trips. Of course it has been a very warm summer and I find that I can't tolerate heat anymore then I can tolerate cold, so maybe when fall comes it will slow down a bit.
Several days ago my husband pulled out the remaining summer garder and I've gotten the cooler weather seeds ready to go. It's 92 today so this too shall have to wait a bit. Tennessee has some very strange weather lately. Where abouts are you? Your profile just says the US. Take care my friend.....the nap I spoke of seems very inviting and I think I will do just that before its time to feed my zoo of animals. Hope to hear from you soon. Regards, Susan