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A Letter to All Orthotists...
By Peggy Pascal Back in 1954, when I was only three, my orthotists worked out of a very small cottage about a mile from my childhood home. The waiting room walls were filled with framed certificates and colored drawings made my Mr. Sabold's little clients especially for him. I remember being so proud that my pictures were on the walls. Because I was a growing child, I needed to make frequent visits to the brace shop, which was next door to a small farm that housed horses. I still remember the smell of hay and feeding apples and sugar cubes to the horses after my appointments. Each time I came for a fitting or adjustment for my brace or crutches, Mr. Sabold would sweep me up in his arms in warm embrace topped off with a kiss planted on my forehead. Most importantly, there were always my favorite red or orange Tootsie Roll® lollipops stored away (just for me) in his brown wooden desk that sat by the front window. I loved Mr. Sabold. He was my friend.
One day when I went for one of my visits to be measured, there was a young man named Julius Torossy whom Mr. Sabold introduced as his new helper. Julius did not speak English very well, but he was always smiling. He was newly married, and he and his American wife were now living in the back of the small cottage. The smells of cooking greeted me each time I went to the brace shop and soon, the cries of twin babies. Visiting the shop was a happy time for me as I got to see the horses, get a lollipop from Mr. Sabold, and play with Julius' babies.
Not long after that, the little brace shop moved across the street to a larger location. Mr. Sabold retired, and Mr. Oscar Silverman became the new owner and renamed the establishment North Shore Orthopedics. As I matured into adolescence and wanted many pairs of shoes that would match my outfits, Oscar and Julius would figure out a way that a stirrup could be put into the oftentimes challenging wooden heel. Julius now took care of all my needs and was the one to remind me to "oil the joints and check the screws." The expanding staff of orthotists at North Shore Orthopedics would attend conferences and come back with new crutches that they thought I should try, or a new type of lock, Velcro, waterproof pads, etc. They were always looking out for me. I remember how I loved October 31, not because it was Halloween, but because it was Julius' birthday. For 30 years or more, I baked him a cake and bought or knit him a special present. Everyone in the office sang "Happy Birthday," watched me make Julius blow out all the candles, and then we'd all eat cake. And I naively assumed that these beloved people in my life, who happened to be orthotists, were always going to be a mile from my childhood home to take care of my orthopedic needs.
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Peggy Pascal and her husband Harry. |
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I contracted polio at the age of four months, and subsequently learned to walk with a brace on my completely paralyzed right leg and 65 percent paralyzed left leg with the aid of Canadian crutches. I was fortunate to receive excellent physical therapy and have always swam daily in addition to watching my weight because I knew how important it was to not put added stress on my "good" muscles. They were overworked as it was. As a result, I stand straight at 4 ft., 10 in. on legs of equal length and weigh 95 lb. I am petite due to my family's gene pool. I am a college graduate with a graduate degree and a successful career. I am a music teacher who has taught classes in the city and suburbs, at levels ranging from kindergarten through college. I've taken choirs of 60 children to Europe for a six-week tour while being the only adult responsible for their health and safety. I always have had many friends and boyfriends and have never let my disability prevent me from participating in any activity, except downhill skiing! During my youth, I was a class leader and recipient of many honors and awards. My peers always included me when I was growing up. They would piggy back me up flights of stairs, archeological digs, fences, or hills; pull me on a sled on the ice rinks, or pedal me on the back of their bicycles. I went to overnight camp, all the dances, and prom. I have been married to the same wonderful man for 36 years. I am the proud mother of two grown married daughters, and now...
I need a new brace.
I miss Julius. He died 15 years ago. I still remember visiting him in his hospital room surrounded by his family. By this time, I had attended his children's weddings, and his son had built an addition to our house. Julius had lovingly made my braces of varying sizes to accommodate my changing leg due to weight gained by pregnancies. He had stopped to see me after my children were born bearing gifts and wanting to measure my thigh to see if I needed a new brace. Through boyfriends, college, my wedding, and then my 10-year battle with cancer, subsequent bone marrow transplant, and tremendous weight loss, Julius was there making braces so that I could walk whether I was 70 pounds and very ill or 125 and very pregnant. In retrospect, I took this gentle, wonderful, amazing, and talented man for granted. I just did not know any better. Shortly after Julius' death, North Shore Orthopedics closed its doors. It was bought by a company that did not make plastic KAFOs.
I am currently wearing a KAFO that was made by a wonderful man in northern Michigan. I have taught at the Interlochen Center for the Arts near Traverse City each summer for many years, and was fortunate to meet and work with this fine orthotist when my old brace "died." After several failed attempts and numerous adjustments, Larry Fetterman of Teter Prosthetics and Orthotics was able to make me a perfect brace. Looking back, I think there was an angel somewhere that planned my brace's demise during the summertime.
Now I am 55 years old and frightened.
Let me try to explain. For the past several years, I have known that I really needed to have a second brace made so that I would have a spare. I knew that I needed to find an orthotist near my home. (I put off the inevitable because of my dread of time spent at appointments related to my body. After all that I had been through with cancer and hospitalizations, I had had enough.) Unfortunately, I have been unsuccessful in my search. I have gone to several orthotists who have thrown up their hands in frustration at their unsuccessful attempts to properly fit me. I, on the other hand, feel very sad and have begun to think that I am:
- difficult;
- demanding;
- a "pain in the neck"; and
- impossible to please;
What puzzles me is the initial message I have received from these frustrated orthotists. They assure me that they will try to make me a KAFO and are willing to listen to my needs and desires for a brace. The cast is made, and I await the call that the brace is ready. It is only after several visits and adjustments to the new brace that I begin to feel the aforementioned feelings. I also worry that I am taking up too much of the orthotist's time and grasp to find solutions. I even make pads myself in a desperate attempt to make the ill-fitting brace wearable.
I am an intelligent woman, and decided to research on the Internet what other polio patients were doing with their braces. It was there that I started reading stories, and there were many. Too many. I was frightened even more. I began reading various articles about post-polio and the fact that orthotists in 2006 did not have experience with polio victims because the virus had been eradicated many years back. Why should new brace wear for us polio survivors be researched? We are a diminishing population.
Looking back, it was not until many years after Julius' death that I truly needed to begin the search for an orthotist who could make me a new KAFO. The first orthotists I went to made me a KAFO that was most uncomfortable. Her words to me were, "Get used to it." I was speechless and never returned. It was obvious that I had chosen the wrong orthotists. I remember this woman asking me why I always took the time to look and dress so nicely when I came for an appointment. I remember telling her that I tried to look nice every day, and this was just the way I dressed. I thought her comments were very odd and inappropriate.
The second orthotist could not figure out what was wrong with the KAFO he made. He told me that he just did not have any more solutions to the problem and sent me to his colleague because he was losing patience. I actually respected this man's honestly. The new orthotist was one of the kindest and most sensitive human beings I have ever met. Sadly, he could not make a comfortable brace for me.
Now I was getting scared. Very scared. I began to question myself whether I was really a terrible patient and difficult to work with. I began to blame the inability of someone being able to make a comfortable brace for me on my personality. I had read and been told that polio survivors are "A type personalities, want things done a certain way, and are very demanding people." Being a very high achiever and well respected and accomplished in my profession and yes, a person who has always been an over achiever in order to rise above my physical handicap, I cannot argue or find fault with this personality trait that I have. Nonetheless, I am in need of a new brace.
I began thinking, Hmmmm. What if both orthotists could speak to each other regarding my specific needs. I shared this with the orthotist who made the brace that was giving me problems, and he agreed that it was a good idea. Larry was agreeable, and I drove six hours to northern Michigan with the KAFO. The brace was so uncomfortable, and the pain was often unbearable. Eventually, the brace twisted my knee so badly that I was unable to bear weight on my leg for almost a month until it healed. With one look at the brace, Larry could immediately see that it had been measured incorrectly and was completely out of alignment for me. He shook his head and told me not to wear it. Sadly, the attempts of communicating orthotist to orthotist was never consummated because phone calls were not returned.
When I returned home, I got the courage to make another appointment to try and find a solution. I was quite surprised by an intern who informed me that he was told to tell me that my orthotist was seeing another patient and was too busy to see me. The young man, who had been at the facility less than a week, told me that he was instructed to try and fit the brace. Sadly, I left and drove the 45 minutes back to my home. I had cancelled my teaching for the morning. A phone call to reschedule would have spared me the three hours lost driving and sitting in the waiting room.
The same thought and fear keeps running through my head. I have no backup brace to the one I am currently wearing and am in dire fear of it breaking. I do not have an orthotist near my home. I need to drive six or more hours to get to Teter Orthotics, there are many snowstorms in the winter, and my orthotist had told me that he is nearing retirement. He is not in the office very much because he travels to many locations throughout the state to train new staff.
Is there any wonder I am so frightened?
I returned to the Internet and came upon the name Mark Taylor at the University of Michigan, Ann Arbor. I read some articles written by him and was impressed. And I had received my undergraduate degree years back from the U of M. It was there in the 1970s that I was able to get a foot piece on my brace that allowed me to wear numerous types of shoes without worrying about a wooden sole and putting a stirrup in the heel of all my shoes. I still remember calling Julius to tell him about it and vividly recall how happy he was for me. Shortly thereafter, I remember Julius and Oscar Silverman taking workshops and using me as their guinea pig for their newfound world of plastic KAFOs. I remember the miracle of being able to take a shower because I could wear my brace with a gym shoe in the shower. I remember being able to wear my KAFO when I went sailing on our sunfish and when I went snorkeling in far-off lands with my husband. What a miracle. I loved it! I was willing to try anything new, and this plastic was so light.
In writing this letter, my mind has revisited my past. I realize that I was willing to try new orthotic inventions. I was not one of those polio survivors who had to have a replica of their "tried and true" orthotic appliance.
Back to Mark Taylor from Ann Arbor... I researched this Mark Taylor and his willingness to speak out about polio survivors. And then I found out that this Mark Taylor was a polio survivor. Can you imagine how I felt that here was a person who was indeed accomplished and well respected, and he wore braces and used crutches as a result of polio? I wanted to meet this man. I had always avoided most disabled people I had met through the years because they oftentimes seemed to be angry and/or felt sorry for themselves and resented able-bodied people. I have honestly never felt that way. In fact, it has always been difficult for me to believe that I am disabled. I always have felt that life is a maze. Everyone needs to find their way. So I have found ways to live my life and go around any obstacles in my path and just reroute. It appears to me that Mark Taylor deals with life in a similar way.
Although the brace Mark had made for me is not yet comfortable, he is anxious to make me a brace that fits my needs (and my blue jeans). He tells me to let him know how it is working and reassures me that he is willing to listen to my complaints. I am the one who hesitates to complain because I don't want him to reject me. I have not told him that the color of the brace is not what I initially asked for. Why? Because I feel guilty for telling him. Am I wrong to want a brace to be flesh colored so that it does not stand out when I wear a skirt? Am I wrong to want it to blend with my leg color so as not to draw too much attention? Am I wrong to be unhappy if the new brace does not allow me to wear shoes that I love and spent a lot of time finding in a size 2½ with a low heel that looks somewhat sophisticated? Am I wrong to care about my appearance and the ability to walk?
I don't think so.
I write this and share my feelings because I want orthotists to know that polio survivors need them. Desperately need them. Orthotists need to listen and be willing to spend extra time with their polio patients. We are completely dependent on all of you to enable us to live and function "normally" in society. I can't walk without my brace. My small frame just can't wear a heavy brace or use heavy crutches.
Please, please listen to us and welcome us into your practices without succumbing to frustration. If we say that we want a brace just like our old one after trying your suggestions, please make it for us. I would love a new innovation in a brace to fit me and better support my frame and protect me from wear and tear. But if I am in pain while wearing it and avoiding walking, etc., when it is on, then it does not fit or is not right for me. I know you have put hours and hours of work into making the brace and hours into listening to my complaints or my "thinking that this time I think you got it right," only to find me back at your doorstep wanting you to try again to make me comfortable. Please don't make me feel guilty or make me wonder if I am going crazy.
I am scared. 
Table Of Contents - April 2007
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