Dealing daily with stuttering is a tough struggle. In addition, coping daily with Parkinson’s disease, type 2 diabetes, severe back pain, mobility loss and fatigue increase are overwhelming. So overwhelming that I ponder these questions 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 all of my disabilities become more pronounced? When do I say enough and end my life with dignity?
I have written rather extensively on my travails with stuttering. Therefore, I will not cover it here. I am praying that it will not get worse as I age and deal with Type 2 diabetes, Parkinson’s Disease, and other aging ailments
My physical life began going downhill three 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. Additionally, 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 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. 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. 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, Aleve or Tylenol.
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. 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. Parkinson’s 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 read the prescription and discussed my program. My left leg and foot were painful and I had limited motion in my leg. I had a 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.
My Four Falls
One of my great challenges is maintaining my balance while walking. In about 10 months’ time, I have lost my balance and fallen hard four 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 again 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 up 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. This happened in November 2012. I still have pain. Again X-rays revealed internal bruising. 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, Last December I was walking down a hill and started sliding. I could not stop and fell forward. I rolled down 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 in choosing my hills.
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 brace and others I don’t. I wear my brace when my 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 3/4 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 45 minutes. I set my cell phone to vibrate every 45 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 leg 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. My response is, “Thank you, but I can do it.”
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 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, 20 or 30 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 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 put it back on once I get going.
There are three drawbacks to using a brace. One is 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 brace, I had 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 velour shoes
Kevin Linde helped me select the brace. It was delivered three days after I ordered it on line. It is made of sturdy plastic and weighs less than two pounds. Linde suggested that I wear the brace to PT. I thought he was wrong, but he proved correct. I wear the brace during my PT.
I use a cane on my walks. This helps 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.
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.
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 always asked 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 then shows me how to do something new. 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.
I have been a professional writer for 45 years. I use to type 45-to-50 words minute. Three years ago the stiffness in my left hand reduced my typing speed to about 10 words per minute. In addition, the fingers on both hands often stay on a key and produce multiple letters like this tomorrrrrrrrrrrow. I was spending a lot of time correcting words. To strengthen my wrist, I purchased a wrist supporter. I wear it sometimes when I type or when I am eating, especially cutting meet. Thanks to my PT, the stiffness in my left wrist and fingers have decreased significantly. I no longer receive wrist and finger therapy when I go to PT. I pray daily that the status quo continues.
To stay productive as a writer, I learned to use voice recognition. It took about a day and a half to familiarize myself with its functions. I use voice recognition for all of my word-processing functions. This includes writing articles, letters, e-mails and creating holiday/birthday cards. Should I lose function in both hands, I shall extend my use of voice recognition to turning on lights, heat, air conditioning and other appliances.
There are many challenges to using voice recognition.
I decided then to try speech recognition. I would use the speech recognition program provided by Microsoft Windows 2010. In June 2012, I started using Microsoft’s speech recognition program. I was not expecting much. I was as wrong as people who once believed the word was flat. In a little more than two hours, I was writing my first article. About three hours after I started using speech recognition, I had a 1,000 word draft completed. This included corrections. I was pleased. I was stunned. I was surprised. It seemed too easy.
Microsoft’s five step program to learning speech recognition was successful.
The steps are:
1. Start your speech recognition program.
2. Set up your microphones.
3. Take the speech tutorial.
4. Train your computer to better under stand you.
5. Open the speech reference program.
None of these activities take long to complete. They build on each other. I recommend doing all five activities before starting speech recognition.
I use speech recognition for all of my writing activities. When writing, I speak three or four words in succession. Ninety percent of the time, speech recognition is correct. Sometimes the program has trouble distinguishing words such as for, four, then, than, two, too, to, roll, row, night, knight, site and sight. Many times when I stutter pronouncing a word, the word that appears is wrong. Correcting the word is easy. I say delete and then say the word I want.
When using speech recognition, I wear headphones to drown out competing noises. Such noises can produce the wrong word, punctuation, symbol or nothing. When dictating, since I speak in phrases, I can produce 45-50 wpm.
I use voice recognition on my cell phone. I say the person’s name and a speed dial dials the number.
I also tried using touch screen technology for word processing, but it was too slow.
When writing, I use 14 point type. My eyes are not as good as they were. I change glasses yearly.
As needed, I shall use other assistive technology products.
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 and Mirapex. Levodopa helps decrease tremors, muscle stiffness and other symptoms of Pakrinson’s Disease. Carbidopa decreases side effects associated with Levodopa. These drugs are combined into one medication called Sinemet.
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.
I do not know what the future holds for me. Presently, my greatest challenges are working on controlling freezing and getting my leg to move when it is tired. My doctor and I are experimenting with raising the levels and increasing the frequency of Carb/Levo so we can decrease and maybe eliminate freezing. I am so concerned about not having a freezing incident that I have restricted my travel and I stopped fishing, going to restaurants and skipping Sunday Mass. I drive short distances and rarely when it is dark. I only go places by car or Taxicab. My wife drives most of the time.
When my leg is weak and tired, and I want to go someplace, I have to sit down and put my leg on a stool or on another chair for 30 minutes. Another remedy is lying across a bed on my stomach for 30 minutes or longer So far, Parkinson’s has not impeded my memory. I pray that it does not.
I have been told there is no cure for Parkinson’s Disease. This situation makes me ask, “Can the medical profession cure anything?”
by John Williams