Parkinson’s Disease (PD) is a mimic. It is also a snowflake — no two incidents being identical in symptoms.
Once ignited, Parkinson’s can take time (up to years) to reveal itself. Symptoms occur, apparently, after a majority of cells in a part of the midbrain stop doing their job. They no longer produce enough of a vital chemical transmitter, dopamine. Dopamine inside and outside the brain speeds messages between neurons, allowing coordinated function of the body’s muscles.
My Parkinson’s was diagnosed last year after months of frustrating false starts and medical dead ends.
PD is a big deal — seven to 10 million cases worldwide. Treatable, yes, but no cure yet, and unclear cause or causes. (Possibly some combination of heredity and environmental factors, such as chemicals.) Onset is usually after age 50, but it can strike people many years younger, such as actor Michael J. Fox.
My story began with dreams, violent ones, three years before definitive diagnosis. I would act out the dreams physically, whacking my bedmate and loving wife Struby, or throwing myself out of bed atop tables or onto the floor.
Struby said to tell my doctor. I said no need, and chalked it up to normal aging (I am 76).
For many others, the first PD sign is loss of smell. My sense of smell is fine to this day. The snowflake effect. Go figure.
Recent research has shown those action dreams (REM Sleep Behavior Disorder in medical terms) are often a telltale indication of early PD damage. The normal disconnect between brain and muscles in sleep fails to happen in those PD cases. You join the dreams with action.
It was harder to ignore what came next: the tremor in my right hand. I blamed it on an inherited and harmless family trait called essential tremor. My internist bought my story. We were wrong together.
My capable USF Physicians Group doctors were puzzled and worried. What could explain my stiff fingers that could no longer button shirts? What about my depression, bouts of fatigue, stiff muscles, sleeplessness, deteriorating handwriting?
Could it be vitamin B12 deficiency? Nope. Tested for and rejected.
Early in 2014, Dr. Elizabeth Warner, my then-internist, asked a USF neurologist colleague to examine and run tests on my stiff, leathery and insensitive fingers.
Pay dirt. The neurologist, Dr. Lara Katzen, and her physician assistant, Terry McClain, decided in less than an hour I probably had Parkinson’s. Why? They observed my shortened gait, foot dragging, reduced arm swing and subpar balance ability.
Case almost closed. Positive response to medication seals the deal. I did have a positive response to the dopamine-replacing drug Sinemet.
April is Parkinson’s Disease Awareness Month.
Hundreds of events will occur this month nationally to raise money to combat the disease and spread knowledge.
(The American Parkinson Disease Assocation will hold a walk and picnic on Sunday at Lake Ida Park in Delray Beach. For details, call 800-825-2732 or email email@example.com.)
The USF Movement Disorders Center, directed by noted researcher Dr. Robert Hauser, is a major national research center on PD. It has four clinical research projects underway that need volunteer participants.
One study is of an inhale-able version of an oral medication designed to provide symptom relief between scheduled oral doses. The second is a genetic study of persons whose families are of certain Eastern European background. The third is of a promising medication that slows PD progression in persons diagnosed with PD but not yet on any medication. A fourth trial is looking at patients suffering from dyskinesia, involuntary muscle movements like tics. For more information on your eligibility for those studies and participation call Leigh Donharl at 813-396-0763.
The Parkinson’s Disease Foundation wants to hear from PD patients and their caregivers in April about what things they would like researchers to study. After reviewing the survey results, PDF will fund scientists to study two community-chosen research questions. The first two studies chosen in 2013 were fatigue and gastrointestinal complications of PD. For more information go to www.pdf.org/communitychoice.
PD is commonly viewed as a neuromuscular and balance disorder. Overlooked are the frequent emotional and cognitive effects, such as depression, impaired decision-making and memory problems. Dementia can be an end stage, if not a common one. Other diseases often prove fatal first.
Parkinson’s has changed my life in significant ways, not all bad. The depression caused by the PD process has been eliminated with medication. A good bit of my fatigue and muscle stiffness is lessened by drugs that replace the lost dopamine. My 90 minutes of exercise three to four days a week has increased my energy and made me consistently feel much better.
When asked, I estimate I am functioning at 80 percent of where I was three years ago. One less-than-earth- shattering casualty has been my golf swing, made microscopically short by stiffness in my back and core muscles.
I continue to work part time and productively as executive director of the Florida Society of News Editors.
I recently completed the Parkinson’s Disease Foundation training to be an advocate for patients in PD research, to recruit patients for clinical research trials and to educate our community about PD. The program is called Parkinson’s Advocates in Research.
A significant barrier to PD research is getting people with the disorder to participate in clinical trials of promising new medications. If you have Parkinson’s, consider signing up to be a research volunteer. I am participating in one trial now.
To connect with a PD Advocate in Research such as myself, call 212-923-4700, email firstname.lastname@example.org or visit www.pdf.org/pair. Other research resources are the Fox Trial finder at www.foxtrialfinder.org and the National Institutes of Health at www.clinicaltrials.gov.
I have a special interest in exercise for PD because it has helped me so much. And PD has deepened my religious faith through prayer and small group scriptural studies.
PD is a treatable but not curable disorder at this point. Many people live long and productive lives with it. You may have PD, but it need not define who you are unless you let it. I, like many others, aren’t giving in. We’re fighting back and supporting one another.
Gil Thelen retired as president and publisher of The Tampa Tribune in 2006 after serving as executive editor from 1998 to 2003. He is one of more than 230 PDF Parkinson’s Advocates in Research. He can be reached at email@example.com.