Recently a friend and I were discussing politics. He supported the present administration’s Immigration policies; and I don’t. Every time he made a point, I countered with what I believe was a more valid point. He became so angry that he said, ‘Go to Hell.’
I replied, “I have been to Hell and back and back.”
The Hell I was referring to is my daily minute-by-minute, hour-by-hour physical and mental battle with Parkinson’s disease.
I know I have been to hell when I wake up at night, and my jaw is locked so firmly that I can’t talk. My mouth is so dry that I could drink gallons and gallons of water and still be thirsty. The sounds that I produce cannot be understood. Fear paralyzes me as I wonder will I ever speak again. My legs feel as though they are being squeezed by a vice. Behind my kneecaps, there is a burning, aching feeling in both legs. My left ankle feels as though someone is striking me with a hammer. My arms are immobile. There is severe pain behind my left ear. The paralyzed fingers on both hands have formed a claw. The tips of my fingers feel as they are being pricked by needles. My vision is blurred. My eyes don’t want to open Every time I breathe; it feels as though someone is hitting my back with a baseball bat. My lungs feel as though they want to explode. Tears roll my cheeks as I curse these symptoms.
My Story
Parkinson’s Disease (PD) is a neurodegenerative brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination. PD is progressive with symptoms worsening as the disease advances. PD occurs when nerve cells in the substantia nigra, a part of the brain, die off. The first symptoms I saw were tremors in my left foot, arm and hand. Over time the same symptoms appeared on my right side.
Other PD symptoms are rigidity (causing muscle cramps and soreness), decreased dexterity and coordination, Bradykinesia (slow movement) and muscle weakness causing problems with swallowing, choking, drooling, voice changes and stuttering. Other PD symptoms include loss of smell, hallucinations, memory loss, delusion and depression.
The American Parkinson Disease Association (APDA) says, “Approximately 60,000 Americans are diagnosed with PD yearly.” This number does not reflect the thousands of cases that go undetected. An estimated 7- to-10 million people worldwide have PD. One million people will have PD in the U.S. by 2020, according to APDA.
Eight years ago, when I was told I have PD I was shocked and numbed. In my 36 years working in the disability arena, I had worked with people with PD. I had seen them during their best and worst “periods”. Knowing there is no cure foe for PD, I decided to assemble an arsenal of weapons to defeat PD or fight it to a draw.
I am determined to make sure that PD does not conquer my spirit. I intend to keep my body moving, my mind expanding and productive, and to obliterate obstacles that PD throws at me. I intend to leave this life walking straight as an arrow
When I told my wife Lisa and our three children I have PD, no one cried. Lisa said, “We are in this situation together. We will get through this together.”
PD’s Five Stages
There are five stages of PD. I have experiences with stages 1 to 4. In Stage 1 tremors developed in my left leg and foot, hand and arm. I began limping. This situation lasted for a year. Then tremors appeared on my right side. The tremors made walking, showering and dressing difficult. The tremors in my feet occasionally prevented me from putting shoes and socks on.
In Stage 2 there were more episodes of tremors and rigidity (freezing), happening multiple times a day and lasting for hours. When rigidity happens people with PD feel as though their feet are frozen to the ground. Walking was painful and difficult. I started losing my balance and falling. Medications had little effect. I was depressed and angry. I sought counseling.
Stage 3 has been the most difficult period coping with PD. I move slower. It takes me longer to write, dress and walk. Maintaining my balance is a major challenge. Hallucinations started three years ago and continue. When I am in the kitchen, standing to the left of the refrigerator with my back facing the sink, a shadowy, bodiless face, covered feminine figure appears on my left side about two feet above my shoulder. She is looking down at me. She is speechless. She stays there until I leave. I don’t speak to her. She appears three and four times a day. I see other bodiless figures during the day.
My worst horrifying hallucination is my weekly recurring dream of standing outside of the Gates of Hell. My body is intact. Inside the open gate, I see a slim, facially disfigured, legless shadowy figures moving about and bumping into each other. The figures are clothed in loose, long-fitting white T-shirts. I see flames leaping higher and higher into the air. I feel their heat. And I hear ear-piercing screams. There is a putrid smell of burning flesh. The shadowy figures are screaming as they realize they will be there for eternity and as flames reach them. Each figure is voiceless, except for their screams. Some screams are louder than others. Each figure is so disfigured that they can’t identify anyone – relatives or friends. I watch as more figures enter the Gates of Hell. Their numbers raise the volume of screams coming from inside. I can’t tell the gender of the figures. I hear the echoes of their screams. They are so loud I am surprised I am not hearing-impaired. As I continue to watch this nightmare, I ask myself, “Why I am here witnessing this horror?” As I ponder this question, I wake up. Each dream seems longer than the previous one. I hate this dream.
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In 2017, I started hearing Jazz music in my right ear many hours no matter where I am. The music makes it difficult for me to hear people’s questions. When I first heard the music, I checked my computer, TV, cell phone and radio to learn if they were on. They weren’t. I know the music is not real, so I focus my attention elsewhere. The music is annoying. It has gone beyond Jazz. I hear different types of music and people singing. Eventually the music stops. It angers me that I can’t turn the music off.
Since 2017 I have been experiencing short term memory loss. When I am asked questions that I know the answers, I can’t remember the answer for 5 to 10 minutes. Memory loss consumes me. I see a time in the future when I could have total memory loss. Every day I pray and pray that PD will not progress that far. If my mind is dead, I am not living.
Long-Term PD Care is Expensive.
Long term care for people with PD is expensive. I am covered under Lisa’s health insurance policy with Anthem-Blue Cross-Blue Shield, and I have Medicare.
My advice to everyone is if you don’t have health insurance, buy it and make sure it covers long term care. The price for treating PD is astronomical. Last year, Anthem and Medicare, just for me, paid more than $162,000. The money covered multiple doctors’ visits, medications, X-rays, physical therapy, five operations and home visits by nurses. This year Anthem and Medicare may pay more than $162,000. My medications are more than $10,000 a month. If I had to pay for my medical expenses, I would be living on the streets or dead.
Anthem and Medicare cover physical therapy. To combat PD, I exercise two hours daily. Physical therapist Kevin Linde branded this message in my brain, ‘Keep those muscles moving.” When exercising, I hear Linde’s advice, “Keep those muscles moving.”
My daily exercise routine involves walking 2 miles a day, riding my exercise bike 15 to 30 minutes, bouncing a tennis ball 50 times with each hand. I put a tennis ball in each hand and flick each wrist 50 times. I use a hand grip in each hand 75 times. I take a 3-foot rubber rope, knotted at each end, and stretch it as far as I can extend both arms 30 times. I do 125 leg exercises.
I have physical therapy twice a week. Linde and I work on mobility, balance, rigidity, tremors and strength. Physical therapy helps me retain mobility, reduces rigidity, stiffness and tremors, strengthens my leg muscles, improves my cardiovascular system and keeps my weight down.
Nearly every morning when I wake up, my legs are so stiff that I can’t walk; and sometimes my jaw locked so tight that I can’t speak. I lie in bed and begin exercising my legs, hands, arms, jaw and neck. It takes a lot of mental energy to start my exercises. Once the muscles start moving, I keep them moving.
To unlock my jaw, I take a big bite of a green apple or hard peach and start chewing slowly. A few minutes later my jaw is unlocked.
There are situations in which I am not mobile, then I use one of my two wheelchairs. I use a walker to prevent me from falling and for leg and arm exercises. I learned a valuable lesson regarding the importance of a walker in my life.
One Saturday morning three years ago, I was walking around a pond near my house without a walker. Suddenly, my left leg buckled. I hit the concrete ground like an exploding shell. Blood was on my forehead and hands. I was in a lot of pain. I shouted, “Help! Help!’ No one came. I picked myself up. An adrenalin rush struck me as I ran to my condo; I opened the door and shouted, “Lisa. Lisa. Look at me.”
She jumped off the couch and ran over to me. She cleaned me up and drove me to the hospital. The hospital staff finished cleaning me up and took X-Rays. The X-rays showed the smallest finger on my left hand was broken. Now my walker or wheelchairs goes where I go.
The Caregiver Experiences
Six years ago, I realized that I needed a caregiver four days a week. I called local agencies that supplied caregivers whose primary responsibility is to keep me safe.
My experiences with caregivers taught me that a majority are poorly trained and under educated and know very little about PD. Three of the caregivers the agencies sent did not speak English. At least three caregivers thought I was totally immobile. They were shocked to discover I wasn’t. I fired three caregivers because when I needed them, they were sleeping, talking on the phone or had gone out without telling me. Several thought that I had to obey every order they gave. For many caregivers caring for me was a second job. If I was writing, they napped. About 1/3 did not drive. Most of them stayed a couple of months, and then they moved on. I was always breaking in a new caregiver which can be physically and mentally exhausting.
Of the 23 caregivers I have had, there is one standout. Addis Tigabu is an exceptional caregiver. Born in Ethiopia, she became an American citizen last year. On a scale of 1 to 10, she is 11. Tigabu had experience working with patients with PD before she came to me. How was she different from the other caregivers?
She arrived on time. She knew the daily obstacles I faced and discussed them with me. She encouraged me to exercise, to write about my battles with PD and to think positively about my situation. She said she had patients with PD who don’t do anything to fight PD. She admired my dedication to defeat PD.
When Addis knew I had a doctor’s appointment, she made sure I was ready. If I had not shaved in days, she would politely say, “May I shave you?” Sometimes she helped me get dressed. She combed my hair and suggested I wear matching clothes. I have five doctors, so when we went to see them, she took notes and asked them questions
She knew when I was depressed and at length discussed the cause of my depression. She walked with me every day. To help Lisa, she washed our clothes, made supper on occasion. She baked cakes several times a week. She has a strong background in information technology. She is in her mid-thirties, single and beautiful. She has a terrific sense of humor. I often teased her about the lack of men in her neighborhood and church for not pursuing her. I said, “The men in your neighborhood and Church wore blinders because you are too beautiful to be single.”
With a smile she would look at me and say,” Mr. Williams, I am doing fine.” Her smile was always there.
She admired Nelson Mandela. We had many talks about political leaders.
Tigabu is religious and family oriented. Frequently, we discussed religion and families. Her religion gives her empathy for the sick and people with disabilities, that I have seldom seen in people. She has magic hands. When I was in a lot of pain, she gave me back and leg rubs to ease the discomfort. When she learned I had decided to have the Duopa procedure done, she discussed the pros and cons of the procedure for hours. She called me the day after the Duopa procedure to find out how I was doing and asked me if I needed anything. She showed me she was interested in me as a person. I never felt I was her patient. I felt she was family.
Tigabu is independent and a straight talker. She has an incredible knowledge of computers, both hardware and software. She is an excellent researcher, a strong organizer and an outstanding manager. She was my caregiver for eight months. She left to care for a man who was in dire need of her services. She was better medicine than all my medications combined.
After a year, we reconnected. We are staying connected. The word humanitarian can be applied to her.
Fighting Back Against PD—Enter Duopa
I have broken both arms and both legs. I have been hit by a car three times. I was kicked in the face—been kicked in the face so hard that I missed three weeks of school. I have had the shingles and carpal tunnel syndrome. I had ulcers, and I had an infective cyst removed from the tip of my spine. I thought I knew what pain is. I didn’t until Parkinson’s disease entered my life
My most egregious complaint regarding my medical care for PD is the years I spent searching for a pain killer. I kept telling the doctors of the pain I endured every day for hours. Over the years, doctors prescribed Ropinirole, Mirapex and Neupro Benztropine, Rasagiline, Xadago and Rytary. None of these medicines deal with pain. They deal with easing tremors, shakiness, stiffness, mobility, spasms and poor muscle control.
In November 2017, I met Dr. Fernando Pagan, associate professor in the Department of Neurology, and Co-Director, Movement Disorders Program, MedStar Georgetown University Hospital.
At the time of our meeting I was taking 31 pills daily.
Dr. Pagan suggested that I consider the Duopa therapy. Duopa is a treatment of motor symptoms for people with advanced PD. Duopa therapy is a gel infusion of Levodopa and Carbidopa. Levodopa is in a class of medication called central nervous system agents. It is converted to dopamine in the brain. Carbidopa is in a class of medications called decarboxylase inhibitors. It prevents Levodopa from breaking down before it reaches the brain.
Initially, Duopa’s side effects scared me. They can include hallucinations, depression, suicide, heart attack, abnormal blood tests, uncontrolled sudden movements, unusual surges, progressive weakness or numbness or loss of sensation in the fingers or feet and even death However, after talking to people who underwent the procedure. I decided in its favor.
Before starting Duopa I needed surgery. On June 18, 2018, I underwent the 30-minute Duopa procedure. The surgeon made a small hole (called a “stoma”) in my stomach wall and then placed a tube in my intestine. This allows Duopa to bypass my stomach and go directly into my intestine. A pump that I wear 16 hours daily is connected to the tube. I wear a vest that conceals the pump. I can wear pump ion a pouch on my left side.
As an outpatient, I was in and out of the hospital in seven hours.
Three weeks after the first Duopa operation the tubing came out of my stomach. I had a second Duopa procedure 10 days later. In September, the pump stopped working, and I had a third Duopa procedure. I have not had a fourth procedure. I am told I may have another Duopa procedure done next year. The tubing has to be replaced once every two years to stay effective.
It took 60 days from my third Duopa procedure before I reaped benefits from the Duopa procedure. Duopa has reduced, not eliminated, the number of freezing incidents, stiffness and the pain severity. Other benefits include walking faster and farther, sitting longer, working longer, sleeping longer and exercising more. I feel better physically and mentally. Duopa has improved my quality of life.
There are times when Duopa has not worked for days, and the PD symptoms return. And I am back in hell. A fall, a stumble, a slip, sitting too long, a cough can interfere with the Duopa flow. The interference can last 20-to-30 minutes or hours. Sometimes it takes days for the Duopa to get back to an even flow. When this happens, I push an extra dose button on my pump that most of the time works.
Duopa has to be refrigerated. Every morning at 7:00 Lisa takes the Duopa gel medication out of the refrigerator. She lets it defrost for 15 minutes and enters my bedroom to reconnect the pump to the stomach tube. She grabs a pair of tweezers and a tissue and slowly picks out the crust and a yellow liquid that developed during the night around the tube coming out of my stomach. I have lost plenty of chest hairs while she is cleaning around the hole. If the tweezers or tissue penetrate the hole, I get immediate pain. She cleans two tubes by injecting carbonated soda in them. Then she connects the Duopa cassette tube to the tube coming out of my stomach. When that task is finished, she programs the pump to deliver the medication constantly throughout the day. She duplicates the cleaning procedure in the evening when she disconnects the pump.
While waiting for the second and third procedures, I returned to swallowing 31 pills daily and to frequent freezing episodes and pain. I never wanted to become addicted to medication, so I am careful not to take more pills than necessary.
Before going to bed, the pump is separated from the 8-inch-long tube protruding from my stomach. The tube is capped. I take 11 pills to help me sleep and to deal with freezings while sleeping. Like a precision Swiss watch, every night between 2:15 and 2:45, I wake up with stiffness in most of my body and pain. Four pills and a large container of water are on a small table near my bed. If I can reach them, I take the pills and drink a lot of water. If I can’t move, I push button on my bed rail to call Lisa to give me my nightly medicine. Either I fall asleep immediately after taking the pills or I am awake the rest of the night. If I can’t go back to sleep, I grab my iPad or Kindle and either read or watch a movie.
There are times during freezing episodes at night when I tell Lisa, “I don’t want to live this way.”
Her reply is, “John, there are no whiners in this house.” She smiles when she makes that statement.
The Downsides of PD
Every minute, every hour, every day PD challenges me. I detest PD. I want to see its demise to end its cruelty. I have endured many down sides with PD. I voluntarily gave up driving, out of my fear that I could cause a serious accident if I had a freezing episode while driving. I am a man who loves driving. When I drove, I was my own boss. If I wanted to go fishing, I got my gear and went. If I wanted to drive into Washington, D.C., I would ask my family if they wanted to go. I would go alone or take a family member. When I needed new clothes, I would buy them.
I don’t have that luxury today. I have to depend on others to take me where I want to go. Too often I wait days or weeks before someone takes me where I want to go. I get very angry when this situation occurs. Losing my independence depresses me.
PD has weakened all my senses and me, physically and psychologically. I have battled tremors, rigidity, muscle cramps and soreness, decreased dexterity, memory loss, hallucinations and Bradykinesia. I have survived pain that put me in a state of unconsciousness. I have trouble swallowing, choking, drooling, coughing, sporadic memory loss, and depression. I have had the same severe cough for three years. Eye surgery was postponed twice to because PD was out of control.
PD has robbed me of tens of thousands of dollars because I could not cover assistive technology conferences for news organizations and perform other communication tasks. PD has caused me to doubt my sanity. It prevented me from attending my daughter’s wedding 6 years ago in Korea.
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PD gives me dry mouth and locks my jaw. Too often, dry mouth appears when I am talking to someone on the phone. In extreme situations, dry mouth increases my stuttering during telephone calls. The combination of dry mouth, stuttering and a locked jaw makes it impossible for me to be understood. Therefore, I have to return the call.
I still have nights when I wake up and discover my whole body is so stiff that I am immobile, speechless and scared that PD has won. When this situation occurs, I call on God to help me. I need to summon strength to get out of this situation. It may take an hour, 90 minutes or two hours of activating one muscle, then 2, then 3 and so forth until I am mobile. It’s a struggle, but it’s one I have to win.
The moral support that I receive from family and friends is medicine to me. I could not survive without Lisa’s assistance and my children; Sean, Faith and Brandon. Lisa’s stamina awes me. She is a wife, bread winner, mother, grandmother of 3 children and my evening and morning caregiver. My ego soars knowing hundreds of people are praying for me. If the medical profession can’t cure me, then maybe prayer can. God are you listening?
I have spent many, many, many evening hours on my knees praying. I ask God to cure me.
I am determined to make sure that PD does not conquer my spirit. I intend to keep my body moving, my mind expanding and productive and to obliterate obstacles that PD throws at me. I intend to leave this life walking straight as an arrow.
John M. Williams is an award-winning writer. He has spent nearly 40 years covering disability and assistive technology products. He coined the phrase “assistive technology.”
