Shocked by diagnosis, former educator decides to confront disease head-on
Posted: May 18, 2015 at 1:53 a.m.
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| William Downs Jr. has found that exercise and support networks are vital components of living with Parkinson’s.By John Sykes Jr. Credit: Arkansas Democrat-Gazette |
Being the cockeyed optimist that I am, I never paid much attention to the occasional ribbing I received from good-natured colleagues at Ouachita Baptist University who accused me of shuffling when I walked down the hallways in our mass communications department.
William Downs and his wife, Vera, recently relocated to a retirement community in Bryant. (By: John Sykes Jr.)(Credit: Arkansas Democrat-Gazette)
About three years ago, however, I was trotting along on Feaster Trail in Arkadelphia when suddenly I was moving much faster than I intended and could not slow down. I also was about to faint.
A few yards ahead of me was an iron gate that I knew I had to reach before collapsing.
Moments later, gasping for breath, I crashed into it.
An OBU student who had been running a few steps behind me, yelled, "Way to go, Dr. Downs!" I suppose he mistook me for an out-of-control athlete.
I thanked him for helping me get back on my feet; we had a good laugh, and he drove away. Minutes later I made an appointment with my family physician, Dr. Noland Haygood. At that appointment, he referred me to a neurologist in Little Rock.
When I told the neurologist what had happened, he asked me to walk to the end of the hall outside his office and then to walk back toward him. When I returned, he said, almost triumphantly, "I know what your problem is. You have Parkinson's disease!"
"How did you know that so quickly?" I asked.
"Because you were shuffling," he replied.
Returning to Arkadelphia later that afternoon, I'll admit, I was asking myself, "Why me, Lord?" To my surprise, I immediately answered my own question: "Why not me?" Still, I was frightened by the unknowns that lay ahead. This was not a bad dream but a terrifyingly real illness to someone -- me -- who at 80 had never suffered a really serious illness.
Checking the Internet for a definition of Parkinson's disease, I found it described as "a progressive illness" (keeps getting worse) and incurable.
Rushing back to Haygood the next day, I asked him how I should handle what felt like life-shattering news. He quietly responded with one word -- "Acceptance."
He was right. From that moment on, whenever I begin to worry, I immediately recall his advice, and it always works to calm my fear.
WHAT'S AILING ME?
What is Parkinson's disease?
"Parkinson's disease is a progressive, neurodegenerative disorder that affects movement, muscle control, as well as numerous functions," according to the consumer-information website Medifocus (parkinsonsdisease-guidebook.com). "It is part of a group of conditions known as motor systems disorders. Parkinson's was named for James Parkinson, a general practitioner in London during the 19th century who first described the symptoms."
According to the Parkinson's disease pages on the National Institutes of Health's National Institute of Neurological Disorders and Stroke website, the hallmark symptoms are:
• Asymmetric tremors at rest, that is, tremors or trembling in hands, arms, legs, jaw or face on one side of the body but not the other;
• Rigidity, or stiffness of the limbs and trunk;
• Bradykinesia, or slowness of movement;
• Postural instability or impaired balance and coordination.
"There is currently no cure for PD; it is always chronic and progressive," the Medifocus website says, "meaning that the symptoms always exist and always worsen over time. The rate of progression varies from person to person, as does the intensity of the symptoms.
"Parkinson's disease itself is not a fatal disease, and many people live into their later years. Mortality of PD patients is usually related to secondary complications, such as pneumonia or falling-related injuries."
WHAT ARE THE CAUSES?
"PD is caused by a lack of the chemical messenger dopamine in the movement centers of the brain. The lack of dopamine -- a neurotransmitter acting within the brain to help regulate movement and emotion -- is a result of the death of dopaminergic neurons in these brain regions," said Chase Lambert of Bryant (full disclosure: my grandson), who is scheduled to earn his doctorate in neuroscience and pharmacology this summer from the University of South Florida in Tampa.
"I think it's important," he added, "to make the distinction that PD isn't just a result of not having enough dopamine. The underlying cause is that the neurons in the brain's movement centers that produce and use dopamine die, which leads to an overall decrease in the amount of dopamine being produced/used, and this leads to the motor dysfunction."
If the disease was simply due to a lack of dopamine, he said, it could be slowed or stopped using medications that increase dopamine levels (such as levodopa, aka L-DOPA). Levodopa does help people with their symptoms but it doesn't cure the underlying problem: the death of the neurons that use dopamine as a neurotransmitter in these brain motor regions.
"It will take a better understanding of what causes PD as well as a method by which to identify people with pre-PD symptoms to develop a therapy that can reverse or slow the death of dopaminergic neurons," Lambert said.
Besides a lack of dopamine, Parkinson's can be aggravated by exposure to pesticides or industrial toxins, a family's genetic history and the process of aging itself.
AGE AT ONSET
I am relatively old for a newly diagnosed Parkinson's patient, but the disease usually affects people older than 60, according to the national institute's website.
According to the Michael J. Fox Foundation for Parkinson's Research, the average age at onset of symptoms is 60, although some people have been diagnosed as young as age 18. The actor Michael J. Fox was in his 30s when he disclosed his condition to the public.
His foundation's website states that with no objective test for the condition, the rate of misdiagnosis could be high, and therefore estimates of how many Americans have Parkinson's "vary." The foundation estimates the disease affects about a million Americans.
So how is Parkinson's disease diagnosed? Because there are no specific laboratory tests, "doctors make the diagnosis based on the presence of typical signs and symptoms," according to an article on parkinsons.about.com written by neurology researcher Patrick McNamara of the Boston University School of Medicine.
He notes that the primary movement (or motor) symptoms can include slowness of movements, muscle rigidity (stiffness), resting tremor (shaking), impaired balance and posture, incontinence, difficulty in smelling or speech, loss of fine motor control (such as writing or buttoning a shirt), decreased arm swing, decreased facial expression or difficulties in speech, and, as previously noted, "a shuffling gait."
"If you have PD," McNamara writes, "you are probably aware that people ask you to repeat what you just said more than they used to. Speaking clearly and intelligibly becomes a little more difficult when you have PD. While 80 percent of people with PD experience some type of speech problems, fewer that 5 percent seek treatment for those problems.
"This is unfortunate since effective treatments are available for speech, voice and language problems."
Older students in the Berean Sunday School class I taught for 25 years at First Baptist Church in Arkadelphia began to complain that they could not hear or understand me, and so I contacted the speech therapy department at OBU where I received excellent vocal training. It worked.
WILL IT BE CURED?
My grandson assures me there are some very promising treatments, including levodopa drug therapy, other drug therapies, physical therapy and surgery. I can read about the latest research developments at parkinson.org/whatshot.
For instance, in March, Dr. Michael Okun, national medical director of the National Parkinson Foundation, posted "Everything a Parkinson's Disease Patient Needs to Know About the New Dopamine Pump."
"One of the common dreams shared by Parkinson's disease patients around the globe," Okun begins, "is the possibility of living a pill-free existence. One year ago we shared the news of a therapy coming to the United States with the possibility to make this a reality for a select group of patients. The therapy has received a full FDA approval and will be sold under the name Duopa (AbbVie, USA).
"One cannot blame the Parkinson's disease patient or caregiver for dreaming big," Okun continues. "A single day living in Parkinson's disease shoes is not uncommonly accompanied by the need for dozens of pills. In many cases, pills are taken as frequently as every hour or two. If you ask Parkinson's disease patients to place an entire pill regimen for the day into the palms of their hands, there is a very good chance that they will not be able to hold all of the tablets and capsules."
Okun cautions that in two decades of once-promising research, deep brain stimulation failed to replace medications. But the dopamine pump looks like a comer. Okun writes, "Entering the market in the coming weeks is a new dopamine pump. The pump strategy offers the possibility for constant stimulation of the brain's dopamine receptors through the use of a continuous dopamine infusion pump technology."
LIFE GOES ON
"It is possible to live an active life with PD," McNamara writes. "If you take advantage of the best treatment options for you, maintain an exercise regimen as best you can, and create and use a support network, you will increase your ability to remain independent and to live a pretty normal life. Learn as much as you can about PD and allow yourself to accept help from others when you need it. It's also a must to make your family and friends aware of this new term in your life."
Echoing Haygood's advice, McNamara writes, "For most people with Parkinson's disease, acceptance is an emotional necessity. Acceptance allows them to be more available emotionally to their family and friends, to more easily plan for the future and helps patients to stay on track with respect to the treatment plan their doctor recommends."
Acceptance opens the gate and helps me move forward.
Bill Downs is professor emeritus of mass communications at Ouachita Baptist University, where he taught for more than 40 years. He is also the author of two books, The Fighting Tigers and Stories of Survival: Arkansas Farmers During the Great Depression.
http://health.einnews.com/article/265982428/jbjaiIC5-SBPDvKt
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