How my Stuttering Prepared Me To Deal with Parkinsons' Disease
a daily battle with no end in sight
By John M. Williams
I have had many physical and psychological challenges in my life. One of them has plagued me for 62 years. The other has challenged me for about five. The 62-year-plague is stuttering. The five-year plague is Parkinson’s disease. At times both conditions have worn me down physically and emotionally. I believe the trials that accompanied stuttering prepared me to deal with the multiple gut wrenching daily challenges associated with Parkinson’s disease.
I was not born stuttering, nor was I born with Parkinson’s disease. I can pinpoint with 99.9% accuracy when I started to stutter. It was in May 1952. Psychologists, a psychiatrist, and half a dozen speech therapists point to a singular incident that occurred on St. Valentine’s Day in 1952. On that fateful day, my second grade teacher repeatedly smacked my left hand with a steel ruler. She wanted to change me from writing with my left hand to writing with my right. She severely damaged my left hand. Shortly after the incident I developed shingles, a viral infection that produces very painful skin blisters. Shortly after I had the shingles, I started stuttering.
I never went to school that year. A teacher came to my house for the rest of the year. The incident also created a life-long suspicious attitude regarding the use of power by authorities.
Stuttering is speaking in such a way that the rhythm is interrupted by repetitions, blocks, spasms, or prolongations of sounds or syllables. This is sometimes accompanied by contortions of the face and body. I had many contortions of the face and body. Over three decades, I developed a paralytic fear of speaking in public. I knew I had to conquer that fear.
Parkinson’s is a progressive disease of the nervous system marked by tremor, muscular rigidity, and slow, imprecise movement, chiefly affecting middle-aged and elderly people. It is associated with degeneration of the basal ganglia of the brain and a deficiency of the neurotransmitter dopamine.
When I was a teenager and into adulthood, my stuttering was severe. It embarrassed me to take 10, 20, and 30 seconds or longer to say a word. Many of my peers from grades 1 through 12 were not allowed to play with me because I stuttered. I was not invited to parties because I stuttered. I was told by my peers their parents did not want them to associate with me because my stuttering was contagious. This isolationism hurt a lot. As a result of isolationism, I became an insatiable reader. Still, I have grown accustom to being alone.
Because of my Parkinson’s disease, more than a year ago, I gave up driving. My reason for giving up driving is that my legs tend to freeze sometimes. When this happens, I can’t move them. If this happened while driving, a series accident could happen. I did not want to carry an accident on my conscience. However, since I gave up driving, I have become isolated. I do not go to movies. I don’t see my friends unless they come to me. I do not go out for lunch. I don’t go to Mass as often as I did. I don’t take my youngest son fishing. My invisibility caused friends to think I died. It is painful for me to remain isolated. I can see the isolation growing. One of my biggest fears is I shall become a TV couch potato.
Having respect from others is important in handling disabilities. When I was in school and as an adult, I dealt with numerous negative trials regarding my stuttering. One such trial happened during my seventh grade year. Several of my classmates started making fun of my stuttering. I was irate and started a fight with the biggest of the boys. I lost the fight. A similar incident happened during my freshman year. Again I lost the fight. However, for the rest of both years, my classmates never again made fun of my stuttering in front of me.
As an adult, I have received a number of awards for my work in the disability arena. During one award ceremony, the program was running longer than planned. The master of ceremonies approached me and said, “We just want you to say thanks for the award and then sit down.”
I asked, “Are you asking the three speakers following me to drop their speeches also?”
When he said,”No.”
I said, “Then I won’t.”
I learned later that I was being asked to drop my speech because I stuttered. The MC told me, “I’m glad you gave your speech. I respect you more than I did before you spoke.”
These two situations and others made me determined to get control of my stuttering sometime during my lifetime. I did not care if it took the rest of my life. I was going to speak fluently.
As a person with Parkinson' disease, I have been embarrassed at being picked up when I have fallen. I have been embarrassed by slurred speech and when I have forgotten to do something. I have been embarrassed when in public my body stiffens and either I can’t move or my movements appear to be in slow motion. When my body freezes, people asked, “Can I help you?”
I tell them, “No. I have to cope with this trial alone.” Just as I did with my stuttering.
People praise me for being stalwart. Often they tell me, “I respect you for your courage in fighting your Parkinson’s.”
hile I have not been in any fist fights regarding my Parkinson’s disease, I struggle daily to walk. There are times when I inch my legs to move until either I have reached my destiny or my legs are fully active. I have received scores of praises from people who have seen me triumphantly reach my destination by inching along. Such praises increase my determination either to slow down Parkinson’s progress or to beat it.
I have had speech therapy a lot. You can’t believe what I had been taught as a way to control stuttering. One program had me moving my arms forward and background while talking. Another therapy had me singing what I was going to say. Still a third had me speaking to the rhythm of my toes. A fourth had me hypnotizing myself and looking at one person or one object. One therapy had me write down what I was going to say and read it. A speech therapist told me to speak so loudly that my words exploded. The list of therapies goes on. I was told to practice these therapies one hour a night. None of them were effective. I eventually stopped going to the therapist. However, I never gave up my goal of controlling my stuttering.
Then in 1979 I met Dr. James Hillis at American University in Washington, DC. He was the director of the Speech Language Center. Using a computer, I discovered a lot about speech and stuttering. Over an 18-month period, for the first time in my life, I experienced progress in reducing my stuttering rate, my blocks and other symptoms. I took this program seriously. I practiced my speech lessons 90 minutes a day. My future depended on it. At the end of 18 months, my stuttering rate dropped from 90% to 20% and often zero. I was elated over my progress. My professional life changed from the day I stopped speech therapy.
One day, Dr. Hillis came to me and said, “John. I can’t teach you anymore.”
My professional life changed for the better from that day.
Twenty two years later, The American Speech Hearing Language Association’s National Council on Communicative Disorders presented me with the Charles Van Riper lifetime achievement award. In accepting the award in front of 1800 people I adlibbed flawlessly for five minutes. The same situation happened when California State University at Northridge awarded the Fred Strache Leadership award.
Shortly after my neurologist Dr. Suneetha Manem told me I had Parkinson’s disease, she told me to find a good physical therapist. I did. He is Kevin Linde. I have been seeing him for more than two years. I am committed to this program because my life depends on it.
Daily and religiously, I do from 35 -55 minutes of physical therapy. I see Linde twice a week for 45 minutes. Our routines are aimed at keeping those muscles moving. Since Parkinson’s attacks the muscles, it is important that I keep the muscles moving. My daily exercises consist of exercising my fingers, wrists, arms and legs. I have an exercise bike on our patio. When weather permits, I ride the bike for 15 minutes. Sometimes, I exercise twice a day and repeat the exercises that I do in the morning in the evening. By exercising daily, I am told that I am slowing down the spread of the disease within my body. I would not dream of losing even one day of exercise. While I have not received any awards for my diligence, I am proud of my dedication to my physical therapy program. I pray daily that my Parkinson’s disease is truly being controlled jst as my stuttering did.
My medications have a major role in controlling my Parkinson’s. Daily, I take 3.75 milligrams of Mirapex and 9 tablets of Rytary 23.75-95Milligram.
Mirapex is used alone or with other medications to treat Parkinson's disease. It can improve your ability to move and decrease shakiness (tremor), stiffness, slowed movement, and unsteadiness. It may also decrease the number of episodes of not being able to move ("on-off syndrome"). Rytary (rye-TAR-ee) (carbidopa and levodopa) extended-release capsules are indicated for the treatment of Parkinson's disease.
These are life-saving medications for me.
Coping with Pain.
As I was recovering from the steel ruler incident and the shingles, I experienced a lot of pain. I was stoic in dealing with the pain. I did not tell my parents, brothers and sisters when I had pain because I did not want people fussing over me. I did not want someone watching me all the time. My mother would have done so, and would my older brother and sisters.
Today, parts of my body are in pain all the time. Recently on a Saturday morning walk, my left leg buckled. It was as though someone took an axe and chopped off my leg. The result was a hard fall. I lay on the ground for five minutes unable to move. My left hand and elbow were immobile. My pinky finger was bent out of shape and bleeding in two places. From my left elbow into my fingers, I was in severe pain. Under my own volition, I made it back to my condominium. When my wife saw me, she immediately rushed me to the hospital.
At the hospital, one of the findings was I had dislocated the smallest finger on my left hand. Another was I had Iwo cuts on my pinky finger. One cut required five stitches. My left wrist and four fingers were swollen. My left knee had multiple abrasions. When the hospital staff learned I had Parkinson’s disease, I was asked if my stuttering was the result of my Parkinson’s disease. When I told them no, a staff member said, “You are certainly upbeat. Are you always this upbeat?”
Maintaining a Positive Attitude.
When I was younger and stuttered severely, I was my worst enemy. I blamed all of my failures on my stuttering. My stuttering was the reason I could not get the job I wanted. It was the blame for anything that I failed at. I was not a nice person sometimes. Carrying a cross did not do anything for me career wise. I recognize that now. I always had the determination that I could eventually speak fluently. My family and friends told me for decades, “Be positive.”
Since I was diagnosed with Parkinson’s disease, I have talked to many people with Parkinson’s disease. Too often they have known people with extreme cases of Parkinson’s. The person has lost his or her memory and the ability to care for themselves. The person has become a total invalid.
My daily fear is I may eventually be unable to care for myself, and therefore a burden on my family. In that case, I do not want to live.
Meanwhile, I know I must have a positive attitude in battling Parkinson’s disease. It is a daily battle that I must win. I can’t have the same paralytic fear of Parkinson’s as I did with my stuttering. I have to be stronger than my Parkinson’s. I can’t take 35 years to find the right formula to control it. I have to look at it and with every fiber in my body and every ounce of faith I possess I am determined to do everything I can to prevent Parkinson’s from taking control of my body. My stuttering has shown me what is possible. Without having experienced the challenges associated with stuttering, I believe I would have a negative attitude regarding my Parkinson’s and be worse off.