“There is something about a progressive disease that will wake you up and put things in perspective.” CHARLES DEBLIEUX, Louisiana assistant state director for Parkinson’s Action Network
A three-time world heavyweight boxing champion, a world renowned evangelist, a former U.S. attorney general, an actor/producer/author and a Grammy-winning singer: What do they have in common?
Muhammad Ali, Billy Graham, Janet Reno, Michael J. Fox and, most recently in the news, Linda Ronstadt are five of the 1 million Americans with Parkinson’s disease. This year, 60,000 more will be diagnosed with the neurodegenerative movement disorder.
“There is something about a progressive disease that will wake you up and put things in perspective,” said Charles Deblieux, Louisiana assistant state director for Parkinson’s Action Network (http://www.parkinsonsaction.org/) and chairman of the second annual Louisiana Walks for Parkinson’s on Saturday at Audubon Park. The condition affects speech, mobility and cognitive abilities. At this time there is no cure, but medication and various therapies can help slow and control symptoms.
The initial symptoms are subtle, and quite often it is a spouse or loved one who first notices the outward signs.
“I was a runner, and my wife noticed that I was favoring my right foot and my right leg,” said Deblieux, 62, who was diagnosed when he was 49.
Thirteen years ago, Michelle Lane noticed that her index finger was trembling after cooking all day for a family picnic. She was only 32 when she was diagnosed.
Fourteen years ago, Joseph Zeno, 77, was watching television with his wife when she noticed trembling in his left hand.
Randy LeBlanc, 52, of Baton Rouge had similar symptoms before he was diagnosed at the age of 45, but looking back, he said there were symptoms he had ignored.
“I always kept my wallet in my back left pocket, but I started having problems getting it out, so I switched it to my right pocket. You make adjustments without even noticing it or wondering why,” said LeBlanc.
There is not a specific test for diagnosing Parkinson’s disease, but the primary motor signs are resting tremor, slowness of movement (bradykinesia), rigidity and problems with balance. The diagnosis is made through a neurological examination and elimination of other conditions.
“From that moment on your whole life changes,” said Lane, who recalls walking out of the doctor’s office and her mother asking her, “Are you OK?”
The two broke down crying, and then Lane returned to work at her office. The mother of four found some of the simplest tasks challenging. It took her much longer to tie her 3-year-old daughter’s shoes. When Lane’s daughter was old enough to put thoughts to words, she told her mother, “This is really unfair. They (her three siblings) have seen you before you had Parkinson’s, and I only know you this way.” Lane’s oldest son would hold her hand so it wouldn’t shake. But learning more about the disease was the key to living with it as a family.
“That, and a sense of humor,” said Lane, who is of the Michael J. Fox school of thought: that a positive attitude is one of the best tools for dealing with the restrictions of Parkinson’s.
The fundraiser for this year’s Audubon Park walk is confident that the upcoming sitcom “The Michael J. Fox Show,” debuting the end of this month on ABC, will create a better understanding of the disease. Fox plays a news anchor who quits his job after being diagnosed with Parkinson’s but returns to work.
“I remember when my dyskinesia (fragmented or jerky movements) became so bad, I kicked holes in the wall twice. And I broke my foot twice,” said Lane. She underwent deep brain stimulation surgery in 2010, a procedure that can reduce PD symptoms and therefore reduce the medication for it — thus reducing dyskinesia, caused by the cumulative effect of the medication.
Lane says the frightful moments are balanced with funny moments, like the time her son put a McDonald’s McFlurry (a soft-serve ice cream shake) in her trembling hand and said, “Look, Mama, you mix it up as good as McDonald’s.” Lane insists on a sense of humor when it comes to dealing with the symptoms.
Zeno, who takes medication and also underwent deep brain stimulation, says therapy at Touro Infirmary have improved both his mobility and his voice. He said he went from talking like he “had marbles in his mouth” to speaking much louder and clearer, while physical therapy helped him go from a wheelchair to walking unassisted.
“The face of Parkinson’s is a person shaking,” said LeBlanc. “But there are a lot of non-motor symptoms no one can see, like fatigue. I would leave work and feel as if I had been run over by a train.”
Other symptoms are insomnia, gastrointestinal issues, vision problems, skin changes, depression, and pain.
In addition to the medical tools to help with the symptoms of PD, there are also the personal tools, said LeBlanc.
“Regular exercise and a positive attitude.”
Louisiana Walks for Parkinson’s
When: 9 a.m. Saturday, registration. . 10:30 a.m. walk.
Where: Audubon Park Pavilion No. 10 and Newman Bandstand
Information: (504) 952.6659 or firstname.lastname@example.org
Details: Register on day of event or in advance at www.parkinsonssupportla.com for $25. All registered walkers will receive a T-shirt, specialties from local restaurants and complimentary water, soft drinks and beer. Music by the Midnight Special Band at 11am.
For more information about PD:
Parkinson’s Disease Foundation: http://www.pdf.org/
Parkinson’s Action Network: http://www.parkinsonsaction.org/
Michael J. Fox Foundation: https://www.michaeljfox.org/