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Special Patterns: A Story About Parkinson's Disease

Posted By Roberta Winters and Sylvia McCreary, Tuesday, May 21, 2013
Updated: Wednesday, May 15, 2013
"How incessant and great are the ills with which a prolonged old age is replete.”
- C. S. Lewis

This process of aging intrigues me, and has so for much of my time here.  Our human bodies begin tiny and frail, grow strong, create grand things, and then slowly decrease in energy, size, and (sometimes) ability.   Not so different from the trees outside my window, trees that stand tall, that sway and dance, and eventually fall.  But as I stare out my window at all those trees, some of them stand out to me.  These ones are different in some way.  They are not tall and strong; some of them don’t sway and dance.  No, these are different.  They have some special pattern about them, some uniqueness that both stunts their growth and produces a special character.  Limbs are twisted, contorted into interesting shapes and designs.  These ones cause us to pause. 

Parkinson’s Disease (PD) is one of many neurodegenerative diseases, and among the most common.  It is progressive and results from degeneration of neurons in an area of the brain that controls movement.  Any chronic illness will be a test to the will and determination of the patient, as well as a test to family and friend relationships.  But when PD patients develop within family and friend relationships that are nourishing, this can provide the patient with resources that help with their ability to cope and manage with the progressive symptoms.  

I have had the distinct pleasure to meet one exceptional lady, Sylvia, who is one of those trees with a "special pattern.”  She has taught me that chronic illness is a relational illness, and that the persistence and stability of those relationships surrounding one with PD will help to shape the patterns of healthy coping that emerge.  "You have to have an advocate.  You have to have good instincts as to who to trust and who not to trust [regarding medical care].”  Sylvia discussed with me how difficult it has been for her and her family to find support.  And the costs that come with any chronic illness are staggering.  Costs for prescription medications required for PD patients are high, and often these medications are not paid for by insurance companies (including Medicare).  Insurance companies would rather pay for generic brands that sometimes are not as effective.  

"The worst is not knowing what to expect, and knowing it gets worse,” says Sylvia.  "And being alone.”  Loneliness is a theme that repeatedly comes up with PD patients.  You have to include family members in the illness process, Sylvia noted.  She told me that one of the most helpful things she did was to hold a family meeting, and let her children know what she was facing, and how is was affecting her.  Sylvia said that her children now call her regularly, knowing that this little gesture will help their mother manage with difficult days, and times of loneliness.  

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather it is one of those things that give value to survival.”
- C. S. Lewis

"Friends don’t know what to do, so they do nothing.  It’s a loss.”  One of the most difficult things for PD patients to adjust to is the retreating of friends.  "I understand it,” Sylvia says.  "I certainly understand it.”  But this doesn’t ease the loss, or the pain of isolation.  Care takers of patients with PD can suffer isolation as well.  I have heard care takers say that they just can’t leave their dear one alone, just for a moment even; for fear that their loved one will need them.  Some of the care takers I have met have told me that they didn’t get out much… and that friends eventually stop coming by.  I glance around Sylvia’s kitchen.  Her refrigerator is covered with family photos; her children, their children, someone else’s children.  There are a lot of family photos.  I supposed it reminds her that they are all still there, even when they must go to work and school and busy themselves with life.  

"For after all, the best thing one can do when it is raining is let it rain.” 
- Henry Wadsworth Longfellow

I asked Sylvia, "How long did it take you to accept your illness?”  Sylvia thought, "Ten years.”  The acceptance started when she began to write.  She kept an online journal, and there she would write how she really felt about the illness.  She knew that she could get it all out safely, where no one else would see.  "Art is important,” Sylvia says to me.  She says it helps her to relax.  I look again around her kitchen, walls covered with art.  And little water colors, here and there.  A table sits in the corner, housing brushes that had been dipped in water colors; tools for coping.  She usually has her entire dining table covered in art work, she tells me.  But today, (maybe because I was visiting?) her tools sit in the corner, laid out on a table.  

I’m thinking again about the tress outside my window.  Yes, most of them are tall and strong, waving and dancing.  But today they no longer interest me.  How difficult can it be, to wave and dance, when you are tall and strong.  But to wave and dance when you’re not tall and strong, but seated in a wheelchair, and surrounded by photos of family and pieces of water colors, these things make "special patterns.” Those twists and turns that are embedded into the core, they draw our attention.  

Parkinson’s Disease is a relational disease.  It shows up, unexpectedly, in one person’s body, and somehow manages to spread into the whole family system.  It sometimes causes friends to disappear.  But as Sylvia reminds us, "They don’t know what to do, so they do nothing.”  And it is the loneliness that is left.  What are the pieces of a progressive chronic disease, and how do these pieces fit together?  It will benefit us as providers to see these larger system connections, and to know, while one may carry the disease, the effects ripple outward through the system.  We must always think of such illnesses as relational, and remember that the whole is greater than the sum of its parts.  

"Nana, I wish I could have Parkinson’s Disease, and you can run and play.” 
-Sylvia’s 4 yr old grandson

Roberta is a recent graduate of the Marriage & Family Therapy Master's program at East Carolina University (ECU), and presently enrolled in the Medical Family Therapy doctoral program, also at ECU.  Her research interests include gerontology (biopsychosocial & spiritual issues in aging), and health disparities in the Latino communities.

After being diagnosed with Parkinson's disease 18 years ago, Sylvia McCreary co-founded the Eastern North Carolina Parkinson's support group. As the disease progressed she lost her ability to play the organ and piano, but discovered the joys of painting with watercolors.  She has since produced an annual calendar featuring primarily her artwork. A portion of the proceeds goes toward the support of patients with PD. 

Tags:  chronic illness  Parkinson's Disease 

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