Dealing daily with Parkinson’s disease, severe back pain, mobility loss and fatigue are overwhelming. So overwhelming that I ponder this question daily: Is this life worth living? My answer thus far is yes with reservations. My reservations are: How much of a financial and physical burden will I be to my family as I age and the symptoms associated with Parkinson’s become more pronounced? When do I say enough and maybe end my life with dignity?
My physical life began going downhill nearly four years ago, when I started limping on my left side. At first, I was not sure what was happening. At first my limp was barely noticeable. However, gradually it became more apparent. Simultaneously, my hands and feet started shaking. The shaking made it difficult to dress myself. For decades, I showered, shaved, dressed myself and went to the toilet in under an hour. That time was being extended by 20-to-30 minutes. Just putting on my socks took more than five minutes. Putting underwear and pants on took another 10 minutes. Buttoning my shirt added five more minutes. Other challenges included: I started stumbling and experiencing repeatedly severe pains from my left knee to my toes. Finally, I decided enough! I searched the internet for a neurologist in Fairfax, VA. I also searched for a physical therapist. I found Dr. Suneetha Manem and physical therapist Kevin Linde.
My first visit to Dr. Manem was informative and impressive. After listening to me describe my physical condition and examining me, I was told I had a neuromuscular condition that could not be determined at the time. In my four years as her patient, Dr. Manem has impressed me as a doctor who takes seriously the Hippocratic Oath of first do no wrong. She is thoughtful and always asks questions. She takes notes and discusses with me what she writes. She is always interested in knowing if I think the Parkinson’s has progressed and where and do I have an idea on when the progression started. In my meetings with her she gives me all the time I need to discuss what I want. At the end of my first meeting, I was given a prescription and told to return in a month. The medication (Mirapex) stopped the shaking. It did not do anything to stop the limping. For pain I was told to take either Aspirin or Tylenol. I picked Aspirin.
In the four years I have been seeing her, Dr. Manem has been judicious about the strength of the Mirapex and Carb/Levo that I take daily. It has been a gradual buildup to taking 3.0 milligrams of Mirapex daily and seven 25/100 milligrams of Carb/Levo tablets and one 50/200 MG.
At my next doctors’ appointment, I was given another examination and my doctor suggested that I read up on muscular diseases. I was told to return in three months, sooner if I needed. Between doctor’s visits, I devoured material on the web on neuromuscular diseases. I pictured the worst case scenarios for my future. I did not like what I read about various neuromuscular diseases, including Parkinson’s disease.
I was told during my third doctor’s visit that I had Parkinson’s. The announcement was shocking. Before I left, my doctor and I discussed ways to control my balance and other symptoms. She suggested that I consider buying a cane to help me walk, a brace and to buy a wrist band to support my wrist when typing and doing other work. She recommend that I start physical therapy and wrote a prescription for the PT. When I got in my car to drive home, I was sweating. I was scared. I was angry.
Parkinson's disease (PD) is a chronic and progressive movement disorder, meaning that symptoms continue and worsen over time. Nearly one million people in the US are living with Parkinson's disease. The cause is unknown, and although there is presently no cure, there are treatment options such as medication and surgery to manage its symptoms.
Parkinson’s involves the malfunction and death of vital nerve cells in the brain, called neurons. It primarily affects neurons in the area of the brain called the substantia nigra. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. As PD progresses, the amount of dopamine produced in the brain decreases, leaving a person unable to control movement normally.
The specific group of symptoms that an individual experiences varies from person to person. Primary motor signs of Parkinson’s disease include: tremor of the hands, arms, legs, jaw and face, bradykinesia or slowness of movement, rigidity or stiffness of the limbs and trunk and postural instability or impaired balance and coordination.
I discussed my condition with my wife Lisa. She did not panic. She offered words of encouragement and said, “We shall go through this together. Our children Faith, Sean and Brandon will stand by you.”
I started physical therapy soon after I left the doctor’s office. My PT Kevin Linde, Linde Physical Therapy, read the prescription and discussed my program. My left leg and foot were painful and I had limited motion in my leg. I had stiffness in my left wrist and fingers. I was having trouble maintaining my balance. Kevin explained to me how we would confront my challenges over the next many months and longer. We started my physical therapy that week.
One of my great challenges is maintaining my balance while walking. In two years I have lost my balance and fallen hard 10 times. The first time I fell, I was walking my dog. I had a long leash, and Daisy wrapped her leash around my legs and started running. I fell forward to the ground and fractured my right elbow. It took six months to heal. I use a short leash when walking Daisy.
While my elbow was healing, I lost my balance on a raining morning while on my morning walk and fell. I severely injured my chest. I had a huge black and blue mark for months on the right side of my chest. The injury was extremely painful and it hurt when I laughed, bent over or picked any item weighing more than 1 pound. X-rays revealed internal bruising. I stopped taking my morning walks in the rain.
My third fall happened in our home. I lost my balance getting out of a lazy man’s chair, and I landed on the floor. I injured my right kneecap and the area above my kneecap. It took months for the pain to go away I stopped using the chair.
I have a tendency to shuffle my feet forward when I start walking with my cane on a morning walk. In December 2012 I was walking down a hill and started sliding. I could not stop and fell forward. I rolled down the hill about five times before I stopped. I scraped my right shoulder in half a dozen places. When the doctor saw my arm, he said, “What feline attacked you?” It took three months for all the scrapes to heal. I am careful choosing my hills.
In July 2013, I was getting out of my car, when, I lost my balance and fell forward. I hit the ground hard. For nearly five months, I had excruciating pain extending from behind my right knee into my toes. While the pain has gone, I get muscle spasms in my right leg daily. My medications Mirapex and Carb/Levo ER alleviate the spasms.
In October 2013 at 6:00 on a Sunday morning, I was sitting in a lounge chair watching TV. I had planned to go to 7:30 Mass. My plan was to start getting ready at 6:00. I got up from the chair, took about six steps when I lost my balance. I did a 360 degree turn and landed on my rear slamming the back of my head against the door. For 10 minutes I was in a fog. I could not recall anything. When my head cleared, I looked at my watch. It was 6:11. I had lost 10 minutes. I got up slowly. My head ached. I went to my computer and turned it on. I went to WEBMD.COM and typed in a question concerning the after effects of my fall. After I read the answer, I decided to skip church in the event that I might develop severe headaches, dizziness, memory loss, vision loss or other effects. Fortunately, nothing happened.
However, one of the results of my fall was I injured my right eye. Maybe a week after the fall I started seeing double. Gradually, my seeing double grew worse. I went to an eye doctor who told me that I needed surgery. My right eye was not lining up with my left. The problem had to be corrected. Two eye doctors, the surgeon and the optometrist who sent me to the surgeon attribute the alignment problem to the fall.
Mobility is important to me. It enables me to travel short and long distances. It gives me independence. It enriches my quality of life. It allows me to go to church, fish, go to movies, visit museums, attend parties, accept invitations to ceremonies, do face-to-face interviews, dine with my family, visit ballparks and play with my youngest son.
To keep the muscles moving and strong in my legs, every morning (except when it’s raining or snowing), I leave my home around 6:30 and return 35-to-40 minutes later. I have six different routes and I take a different one daily so I will not get bored. Some mornings I wear my leg brace and others I don’t. I wear my brace when my left leg is weak.
Most times it is easy to put the brace on. Other times I need assistance. The brace is 16 inches high and covers ¾ of my foot. The brace serves four functions. The first is it gives me stability. I have never fallen or stumbled while wearing it. The second function is it gives me mobility. Sometimes, I can’t walk without it. The third function is it strengthens the muscles in the leg. Lastly, it helps me to remember to walk in a heel-toe manner. Often when walking my leg will freeze on me. To resume walking, my toes want me to push off on them so I would do a toe/heel gait. A toe-heel gait puts me off balance and freezes me.
One of the causes of freezing is sitting longer than 75 minutes. I set my cell phone to vibrate every 75 minutes. When my cell phone vibrates, I stand up and walk around for 10 minutes. It does not matter whether I am in a meeting, at a movie, in a restaurant, or in church.
More than a dozen times in a year, while walking by myself, my legs froze. This happened in my bank, in several restaurants, in a movie theater, in a Metro station, on my morning walk, exiting a Safeway food store and walking to my car in a parking lot. Once, as I was stumbling to my car in a parking lot, I was stopped by a policeman who asked to see my driver’s license. He thought I was drunk. I showed him my license. Next he asked me to take a breathalyzer test. I did. Nothing registered. When my leg freezes, the rest of my body freezes. I am a human stature. When people see me they asked, “Mister, do you need help?”
If I really do need assistance, I say “yes.” If I don’t, I say, “Thank you for the offer, but I can do this.”
More women have offered to assist me than men.
At least three times, I have been wrong and needed help. Twice, I have been lifted off the ground and carried to a bus shelter by men who weighed more than 300 pounds. One of them was a college wrestler. The other man was a Virginia Tech football lineman. Once a Fairfax City worker put me in his car and drove me four blocks to my home.
The freeze can last from 30 seconds to 15-to- 20 minutes. During the freeze, both legs lock. Either I wait for the freeze to thaw or I use an exaggerated walk to propel myself forward. The exaggerated walk involves, with considerable mental effort, picking my right foot high off the ground and extending it as far as I can with the left leg following. I can take six steps or 50 before the freeze disappears.
Another trick to unlocking the freeze is to turn around and walk backwards. My leg unfreezes, and I can walk quickly. I only walk backwards when someone is with me and only if the ground is level.
Sometimes the freeze happens when I have not taken my medication. Within 15-to-30 minutes after I have taken my medication, the freeze disappears and may not appear for hours. When the freeze happens, and I am wearing my brace, the mental effort required to move the leg doubles. There have been situations in which I had to take the brace off before I could move. I may or may not put it back on once I get going.
I have identical braces for each foot. Sometimes I wear two braces simultaneously. I can wear them inside my pants. There are three drawbacks to using a leg brace. One, you can’t walk quickly. Two, it is difficult wearing it when walking up a hill and steps. Three, even though it weighs less than two pounds, after wearing it for six or hours it feels like a 10 pound weight. So I take it off, and only if I think I will need it, will I put it back on hours later. My shoe size is 10. To wear the foot brace, I have to buy a size 11 shoe with extra width. When my wrist and fingers were stiff, I had trouble tying my shoes. Therefore, I buy dressy, black Velcro shoes.
I have a separate Velcro brace for my right knee. I wear this brace when my leg stiffens. Sometimes, I wear it a couple of hours a day. Other days I wear it longer. The brace lessens the pain.
My physical therapist
My physical therapist helped me select the leg braces. They are made of sturdy plastic and weigh less than two pounds. Linde suggested that I wear the brace to PT when needed. I thought he was wrong, but he proved correct. Sometimes, I wear the brace during my PT. I have a separate black Velcro brace for my right knee. I wear it when my leg stiffens. Sometimes, I wear it a couple of hours a day. Other days I wear it longer. Sometimes, I wear it on my walks.
Sometimes, I use two nearly identical canes on my walks. They help with my balance and speed. Linde taught me how to use the cane. I remember him saying, ‘Walk straight. Walk strong. Walk slowly.”
An essential tool on my walks is my cell phone. In the event that my leg locks, I immediately call my wife or 911. Fortunately, I have not had to call her and 911.
Each morning before I get out of bed, I raise my left and right feet 10-15 times. Then I turn over on my stomach and 10-to-15 times bring both legs back and forth. Then I sit on my bed and move my legs up and down 15 times. If there is no resistance in any of these exercises then I know I can move from my bed into the bathroom with relative ease.
If I encounter resistance with my legs, I know I am going to have difficulty going from the bed to my bathroom and that means walking challenges for the day. Once I am dressed I go for my morning walk.
When I return from my walk, I do a series of leg exercises for about 10 minutes, and then I do a series of elbow, wrist and finger exercises for 7 minutes. My daily exercise routine is about 60 minutes. On days I choose to ride my exercise bike, my exercise runs nearly 90 minutes.
When I started physical therapy, my legs and arm motion were severely limited. For example, I could only move my feet side-to-side about a foot or less. I could raise each foot less than a foot off the ground. I had problems maintaining my balance And, I had limited movement in my left wrist. I am left handed. I had to shave with my right hand.
Today, I am shaving with my left hand. I can lift both legs about three feet off the ground. I can move both legs side-to-side 70 or more times, and my balance has greatly improved. I credit my success to Kevin for developing the PT programs that addressed these problems and to myself for following these programs on days when I am not doing PT with Kevin.
I see Kevin Linde twice weekly. Depending on how I feel, we do a solid 50 minutes of physical therapy. I spend 15 minutes riding an exercise bike, 15 minutes on two different leg exercises using a machine, another 20 minutes on exercises dealing with mobility and balance. We spend the last five minutes trying a new exercise or talking about my progress.
Kevin is a first rate physical therapist. He is always working with me and never has another patient that competes for his attention while I am there. He is always busy. His philosophy is keep those muscles moving. He always asks me, “How are you feeling?” “How much energy do you have?” He watches me carefully. If he believes I can improve my routine, he tells me and sometimes shows me how to do something new. If he sees I am not doing my exercises properly, we stop and we discuss how I feel at that moment. He never rushes me and has never lost his temper. He encourages me to keep working on my PT even when I am not there. He has made a positive difference in my life. When I leave him after my PT, I feel 100% better physically and psychologically. He has become a friend.
He told me, “The goal of physical therapy is to find the right exercise for the patient. We found yours.”
Dr. Manem has been careful in prescribing the pill dosage. I take three medications daily. They are Aspirin for pain and to prevent a heart attack. The others are Carbidopa/Levodopa ER and Mirapex. Levodopa helps decrease tremors, muscle stiffness and other symptoms of Parkinson’s Disease. Carbidopa decreases side effects associated with Levodopa. Mirapex simulates dopamine by stimulating the area of my brain receiving the neurotransmitter; thereby alleviating certain symptoms such as motor symptoms and motor fluctuations, tremor, rigidity, depression and cognition.
Crutches and Wheelchair
In November 2013, I decided I needed more than my canes to help me walk. I purchased two forearm crutches and a wheelchair. I use the crutches when I am having trouble with both legs. They give me more stability and confidence than the canes. However, when using the crutches, in a 10-yard race with a turtle, I would bet on the turtle. I bought an umbrella stand to keep my canes and crutches in when I am not using them.
The wheelchair is used to leave places when my legs are not working. For example, if I am at a restaurant and it is time to leave, but one or both legs are giving me problems, someone with me goes outside and brings the wheelchair inside so I can use it.
Often, it is difficult to walk from the living room to the kitchen for dinner. It was a problem moving the table chair back, then sitting in it., and then moving the chair closer to the table. To deal with this situation, I bought a small office chair with wheels. Now, when I reach the table, I pull the chair back, sit in it and roll myself to the table.
I also bought an office chair on wheels for working and moving around the living room.
Battling My Legs
It is a difficult task to walk when struggling with both legs. A Herculean mental effort is required.
I have different battles with each leg. My left leg is the weaker of the two. There are times when I can’t stand on it, and times when it will not move. When my left leg is weak and tired, and preventing me from walking, I have to sit down and put my leg on a stool for 15-20 minutes. Another remedy is lying across a bed on my stomach for 20 minutes or longer. In each situation something magical happens. I can walk, sometimes normally for hours.
My right leg is the stiffer of the two and the most painful. When it is rock stiff, it does not want to move. Then, it is a major mental and physical struggle to get the leg moving. Initially, I take small steps. Gradually as the stiffness fades, I take larger steps. Even when my right leg is not giving me trouble, it is painful for me to walk up more than four steps. Once I reach the fifth step, I am walking up the steps one step at a time using my left leg and dragging my right leg.
My medications, when they kick in, allow me to walk almost normal. My doctor and I are experimenting with raising the levels and increasing the frequency of Carb/Levo so we can decrease freezing. I am so concerned about freezing that I have restricted my travel, and I stopped fishing and sometimes I skip Sunday Mass. I skip Mass only when one or both legs are not operating together. I drive short distances (not more than 10 miles) and rarely when it is dark. So far, Parkinson’s has not impeded my memory. I pray that it does not.
Prayer is included in my daily program. I ask God to cure me. Either God has not heard my petition or God has heard it and is ignoring it. As long as I breathe, I shall pray for divine intervention.
Speaking of God, I have had evangelicals tell me that I have Parkinson’s disease because somewhere in my family history a heinous sin was committed and God is exacting his vengeance. Catholic women have told me, “God never gives us a challenge that we can’t endure.”
If my having Parkinson’s disease is the result of divine intervention, I don’t need that type of intervention.
Losing one’s memory can be a result of Parkinson’s disease. Aware of this situation, every day I ask myself 15-to-20 questions on various topics. For example, I might ask myself to name the first five and the last five presidents. Name five great home run hitters. Name five great NFL runners. Name five great basketball players. Recite the Gettysburg Address. Recite the last five lines of Lincoln’s Second Inaugural address.
I sing theme songs from television shows. I recite prayers. I name my brothers, sisters, nieces, nephews and cousins and their families. I have a 25-page black notebook that I read from as I ride my exercise bike. I ask questions to myself on the content. To me being mentally active is as important as being physically active.
My goal is to maintain my independence as long as I can. I want to drive as long as I can. I want to work as long as I can. I want to stay mobile as long as I can. I believe that eventually I will have to have a personal care assistant. I am preparing myself mentally for that eventuality. One of my actions is forming a relationship with Visiting Angels. The organization provides senior home care and elder care services.
I have been told there is no cure for Parkinson’s disease. This situation makes me ask, “Can the medical profession cure anything?”
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Dr. Suneetha Manem is John Williams neurologist.
Physical therapist Kevin Linde instructs John M> Williams.Kevin Linde