I have had many injuries throughout my 71 years. These mishaps have challenged me physically and mentally. They include being hit by a car three times, breaking my right leg three times in five months, breaking my left wrist and elbow, falling, being kicked in the eye, pulling leg muscles, wrenching my back, having shingles, stuttering and having Parkinson’s disease.
None of my injuries have challenged me the way stuttering and Parkinson’s disease have. Parkinson’s disease is a progressive disorder of the nervous system that impacts movement. It often starts with a tremor in one hand. Other symptoms are slow movement, stiffness and loss of balance. Parkinson’s patients have difficulty standing, walking and controlling involuntary body movements. They confront muscle rigidity, rhythmic muscle contractions and a slow shuffling gait. It is caused by abnormally low dopamine levels. Dopamine-generating cells, known as dopaminergic neurons (types of nerve cells) in the substantia nigra part of the brain have died.
Stuttering is a speech disorder in which sounds, syllables or words are repeated or last longer than normal. These problems cause a break in the flow of speech, called disfluency.
Throughout my years of battling Parkinson’s I have searched for solutions to deal with all the symptoms associated with it. The mental toughness required to combat multiple symptoms of Parkinson’s began in the summer 56 years ago while in Bloomsburg, PA where I challenged my nemesis—stuttering.
For decades, I was labeled a severe stutterer by speech therapists, psychiatrists, teachers, parents and peers. Non-stutterers don’t realize it requires a strong constitution to cope physically with stuttering day after day, week after week and month after month. I speak with authority when I say the more severe the stutter, the more one’s body gets worn down quickly. For decades, I have experienced that worn out feeling. It is a feeling I experience now due to Parkinson’s.
I started stuttering when I was eight years old. Initially, my parents did not have a fear of stuttering. They believed it would go away. It did not. It stuck to me like fly paper. As the years passed stuttering became my nemesis. Just as Parkinson’s is my nemesis.
I was in the fifth grade when I visited my first speech therapist. He was Frank Jordan. I don’t remember much about him. Reflecting back to my sessions I believe he was not a very good speech therapist. I saw him once a week for four months. Jordon was a proponent of the rhythm theory, and the techniques he was teaching me to control my stuttering were useless.
One of the techniques was to move my arms forward and backwards while I spoke. Another was to speak to the rhythm of my toes. A third technique was to speak to the rhythm of my fingers. A fourth was to sing whatever I was saying. These techniques were supposed to make it easier to speak and eventually I would not stutter.
One night my father saw me practicing the techniques. When I finished, he asked me, “John! Are you learning anything that can help you get rid of your stuttering?”
Dad withdrew me from Jordan’s class.
It was six years before I took speech therapy again. I went to Catholic schools, and they did not provide any speech therapy, so I became accustomed to stuttering. By the end of my sophomore year of high school, my stuttering dominated me. I stuttered on most words.
Sometimes my blocks lasted seconds and sometimes half a minute to a minute. My secondary symptoms multiplied. I had at least 70 secondary symptoms, a secondary symptom is a body movement occurring during a block that aids the block. Secondary symptoms are not limited to one body movement. A stutterer can exhibit multiple secondary symptoms simultaneously.
I knew I wanted to be a writer since the sixth grade. To be successful I knew I needed to control my stuttering. The key to achieving my goal came from an unexpected source. It was the first day of my junior year at St. Mary’s High School. My French teacher Sister Hillary heard me stutter. She was so shocked that she never, I mean never, called on me the rest of the year and only twice the following year. She gave me the name and telephone number of speech therapist John Seamon. John and I clicked instantly. He set up a program to help me control my stuttering. Near the end of my junior year, he told me he had larger plans for me and my stuttering.
In April 1962, Seamon arranged for me to go to Bloomsburg State Teacher’s College, Bloomsburg, PA for the entire summer. The college had a dynamic 12-week speech therapy program for people with severe speech impediments. In June 1962, two days before the program started, I left Wilkes-Barre for Bloomsburg by bus, a 44 mile trip. I was by myself. I wanted it that way. I was nervous. Scared. Worried. Tired. Lonely. I did not have a lot of confidence in myself. Physically I was a mess. During my sophomore and junior years I worked at a grocery store 35 hours a week and went to school full time. After two years of working that crazy schedule, I was exhausted mentally and physically. I was determined to do whatever was needed to succeed.
The Pennsylvania Bureau of Vocational Rehabilitation funded the program. Fifteen other students attended. Half the students stuttered, the remaining students had other speech problems. It was a demanding program specifically designed to help students improve oral communications. The officials running the program did not expect miracles. The people spearheading the program reminded us daily that our commitment to the program was 24 hours a day, seven days a week, for 12 weeks.
The program consisted of individual and group therapy sessions, role-playing, oral reporting, public speaking, sports, socializing and writing. From Monday through Friday all 16 students met from 8 a.m.- 9 a.m. The students who stuttered then went into one room, and students with other speech challenges went into another room. Two hours later we met again for an hour. We lunched from noon to 12:45 p.m. We had physical activity from 12:45 p.m.- 2 p.m. Then it was back to school until 5 p.m. Between 2 p.m. and 3:30 p.m. students had individual therapy. Between 3:30 p.m. and 5 p.m. everyone met in one room for group therapy.
There was homework. We had a voluminous reading and writing program. All my readings dealt with stuttering. I read short stories, books, speeches, dissertations and other materials written by people who stuttered. The goal behind the readings was to expand our knowledge of our speech problem.
We kept a diary on what we learned about our speech challenges. At the end of the week, we turned the typed diary over to a therapist, and the following Monday the diaries were returned ungraded.
My goals consisted of reducing the severity of my blocks, eliminating secondary symptoms, overcoming my fear of speaking in front of others, eliminating my feared words phobia and avoiding starting my conversation then stopping and starting. It wasn’t easy to meet these goals. In 12 weeks, I worked harder than I did during three years of high school.
The Bloomsburg program required a discipline and a strong commitment I had never experienced. By the end of the summer, my teachers Dr. Maietta (who ran the program), Sam Schilling (Dr. Maietta and Schilling stuttered), Sandra Williams (no relation to me), Dick Meese, Carl West and Dr. Bellini praised my attitude and progress. Dr. Bellini was a psychiatrist, and he worked with me in a group and in one-on-one situations.
We were required to read six books on stuttering and report on them orally before students at the college majoring in special education. Initially, I balked at speaking to students I did not know. I tried to get out of the assignment, but I could not. When we finished our reports, we answered questions from the students. After each report the students and the people running the program evaluated me. Everyone told me I was improving with each report.
One of the most challenging courses of the program was the six weeks we had to go out in the evenings, four times a week, for 90 minutes and introduce ourselves to people on the street. We were divided into four groups of four, and an adult staff member of the program accompanied each group. We walked down different streets. We introduced ourselves to the people we stopped, explain why we stopped them and then asked them questions.
When they answered the questions, we had to write down what we felt when we started talking to the people. When talking to the people, we had to practice our goals. The next morning we reported on the previous night’s activities. Students in each group evaluated their peers.
Even though we were high school students, we had the same privileges as the college students. We slept in the same dorms, ate in the same cafeteria, sat with them, played baseball and other outside games with them and partied with them. They knew why we were there and accepted us. Their acceptance made us feel good about ourselves.
During the last two weeks of the program, all of us were interviewed on radio and TV stations to talk about the program. During the last week of the program, each student had to stand in front of our fellow students and teachers for 20 minutes and tell what we thought we had accomplished.
The last day of the program was emotional for my classmates and me. We had been through a lot together. We were challenged and triumphed. I was a different person. I was in the best physical shape of my life. I was confident, cocky, proud of my achievements and ready to show everyone my accomplishments. When people heard me speak without stuttering, I received kudos from everyone.
My successes were I reduced the severity of my blocks, eliminated most secondary symptoms, overcame my fear of speaking in front of others, eliminated my feared words phobia and eliminated starting my conversation then stopping and restarting.
My Parkinson’s War
To prevent Parkinson’s disease from conquering me, I assembled an arsenal of weapons.
The Parkinson’s pain caused by muscles tightening is beyond description. When the pain runs through my entire body my jaw locks rendering me speechless. The pain can also be local. It may only be in my legs, or in my hands and arms. Some of the most painful times are having a burning, itching, aching pain behind my left knee cap for hours. When this situation happens, I wind up on my stomach or back for hours.
Parkinson’s snipes at me daily.
I can experience a full body attack in which the pain is excruciating and can last for hours. I have become accustomed to the pain. When I have a full body attack, I muster my strength, pray and I repeat this phrase, “I am going to out muscle you by keeping my muscles moving.” I imagine myself arm wrestling the disease. The longer we wrestle, the stronger I become. When my fingers start moving, movement in my wrist, elbow, arm, shoulder and jaw follow. To get my jaw moving either I sing, recite poems or pray out loud.
Another weapon in my battle with Parkinson’s is exercise. Exercising daily is an important tool to outmuscling Parkinson’s. When I was at Bloomsburg State Teachers’ college, staying in shape and feeling physically fit were concepts incorporated into our daily program.
Every day, some part of my body is in pain around the clock. Parkinson’s attacks my legs frequently and at different times in different places. Sometimes only my left leg is attacked. Other times both legs are attacked leaving me immobile. To counter these attacks, I exercise religiously 75-to-90 minutes every morning. I ride an exercise bike for 30-40 minutes. I walk 10 minutes for 0.3 of a mile twice a day. I do a variety of finger, hand, wrist, arm and upper-body muscle exercises for 12 minutes and then 10 minutes of leg exercises. Without these exercises, I believe my physical condition would be more deteriorated than it is.
A third weapon is my medications. I take four different medications, 25 pills a day, to cope with the pain, stiffness, balance, muscle rigidity and other symptoms. Without these medications, I would not function as well as I do.
Family support is another weapon. As I needed Seamon to counsel me on maintaining the goals of the speech program, I need assistance in dealing with Parkinson’s disease. Such assistance comes from my family and friends.
My wife Lisa assists me every day at different times. She drives me to the store, the doctor’s office, church and other places. She reminds me to take my medicine, to exercise, to maintain a positive attitude and she will discuss any problems associated with Parkinson’s. She encourages me to be tough and says, “There are no whiners in this house.”
Additional assistance is provided by my physical therapist Kevin Linde, I see him twice a week for an hour. When I see him, I discuss how I feel and what challenges I have faced since my last visit. Linde has a deep understanding of Parkinson’s. He has developed a flexible program to help me deal with many Parkinson’s symptoms. He listens well. I can call or e-mail him anytime and leave a message that I need his advice. He will return my call or e-mail.
My sons, daughter and other relatives provide me with moral support, assistance and love.
Information is another weapon. I read everything I can on Parkinson’s disease. The information can be depressing, but it can also be informative and produce the hope that medical advances are approaching a cure.
Parkinson’s is not an easy disease to live with. There are many symptoms. I have five doctors each one dealing with either one or multiple symptoms. One of these symptoms is terrifying, violent dreams. I have awakened during a violent dream to learn I have hit my wife multiple times. Therefore, I sleep by myself.
Parkinson’s has impacted my vision, hearing, speech, breathing, balance, teeth, mobility, weight and memory. I have had a persistent cough for more than a year. My vision symptoms have intrigued me. A fall caused by my Parkinson’s resulted in me seeing double. I had surgery to correct this problem. I see imaginary images of people and animals over my left shoulder constantly. Sometimes there is one image and at times there are three or four. The strongest image is of our late dog Daisy. I know these images are not real and ignore them. Occasionally, I see stationary images (stones) move. I know they are stationary, and so I don’t panic. From time to time when I am looking for something, it can be in front of me and I do not see it. Eventually, I do see it.
Parkinson’s has altered my life in ways that are unpleasant. I don’t go anywhere by myself because I am afraid I will have an attack. I stopped driving. I have not fished in years. I can’t go to movies or any sports game by myself. An inner pain is I can’t take my grandsons for walks by myself. I have to depend on various medications for my existence. Lastly, I have become a recluse.
Fifty-four years ago, I was given the opportunity and the tools to get control of my stuttering. The results, while not perfect, changed my life for the better. Today, I have the opportunity and the tools to combat Parkinson’s. The tools are the doctors working with me, my medications, exercise, friends, prayer and information. From what I know about Parkinson’s I would not be performing the tasks at the level I am if I was not as informed and committed. This information empowers and better prepares me to cope with future challenges Parkinson’s throws my way.
As I see it, the past benefits the present.
by John M. Williams