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“Parkinson's is a long, lonely road … for the afflicted and for the caregivers. It’s just as bad as Alzheimer’s. At least with Alzheimer’s, they are still moving. With Parkinson’s, everything shuts down, and it’s a long, lonely road.”
These are the words of Charlene “Pokie” Pryor, as she described the disease that began to claim her lifestyle when she had two grand mal seizures in 1996.
What is Parkinson’s? It’s is a progressive disease that affects more than a million people in America, usually later in life.
As yet, there is no cure for the disease, which can cause severe tremors, rigidity of relaxed muscles and periodically rigid limbs, as the brain stops making a chemical, dopamine, needed for movement.
Parkinson’s patients can struggle with walking, talking, writing and dealing with depression. It also eventually affects the throat.
It affects different people in different ways. Familiar people afflicted with the disease are actor and director Michael J. Fox and champion boxer Mohammed Ali.
Pryor said, “I had problems after the grand mal seizures, off and on, that they did not address as Parkinson’s, because they thought that I was too young
“Then I had two knees replaced and, with the second replacement, I knew that I had Parkison’s, because I had developed an extreme tremor on my left side.”
She was then diagnosed with the disease and was placed on medication in 2006. She is under the care of neurologist, a rheumatoligist and a general practitioner, all of which coordinate her treatment and medication.
“And seems to be going along pretty well,” she said.
There are days that are worse than others. The prognosis could be very frightening and depressing, but she chooses to spend her time offering encouragement and hope to others with Parkinson’s.
She visits websites mystlouistoday.com and patientslikeme.com, and also has a blog, “Pokie Too,” on which she shares uplifting thoughts and encouragement for others with Parkinson’s.
She is working with Dr. Asad Jamal, The Wellness Clinic and Fayette County Hospital to set up a Parkinson’s support group at the hospital.
“The group is not just for Parkinson people, but (also) for anyone with a movement disorder, a caregiver, a friend or neighbor who wants to get some information,” she said
The Quilt of Encouragment, Hope, Strength and Courage
She is in contact with people afflicted with Parkinson’s from all over the United States, and the idea was born to make a quilt, with Parkinson’s people making and sending their personalized quilt blocks to her to be joined together.
“I just put out the question, asking if anyone would be interested in making a quilt, and all of these are now posters on patientslikeme.com,” she said, indicating the many, colorful quilt blocks she has received.
The blocks represent Massachusetts, Texas, California, Indiana, South Carolina, Illinois, Virginia, Tenneesse, South Carolina, Ohio, and Canada.
The blocks are colorful, cheerful and individualized, bearing such things as a teapot, a guitar, bagpipes, flowers, boats, footprints, butterflies, hearts, seahorse, the symbol for patietslikeme.com, a goat and tulips, the symbol for those afflicted with Parkinson’s.
Pryor’s block contains a laminated penny sewn inside the block, for good luck. A poem sent to Pryor will also be included in the quilt. The names of the donors will be visible on each block.
The quilt blocks are still coming in and all will be stitched together and then machine-quilted in time for co-captain Pryor to take to the Unity Walk in New York in April.
It will then travel with her and be displayed, and it will eventually be raffled off.
“The quilt-a good example of the fact that all Parkinson’s people are not in nursing homes, but that we are capable people and out there functioning.”
But All Not Affected the Same…
“Some live, some don’t. Everyone is affected in different ways. Some use walkers, some are in the wheelchair stage. Some can’t talk,” Pryor said.
Mohammed Ali can’t talk, can’t dress himself, but yet the brain still functions,” said Pryor, who has had conversations with Ali’s daughter.
Pryor does not have good movement in her left arm, she drags her left foot a little and has problems chewing on the left side.
She is especially concerned about the loneliness and depression as the disease progresses. She is a firm believer in a simple hug for encouragement and therapy.
Pryor also advised people to always look a Parkinson patient in the eye, “There, you can tell whether they are laughing or crying,” she said.
She is enthusiastic about the help and services being provided at Fayette County Hospital, and is hopeful for the progress being made for treatment of Parkinson’s.
Meanwhile, she continues working on the quilt project, which is bonding together the Parkinson’s people with encouragement, self-expression and unity.