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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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It Took A Long Time, But She Did It Her Way

Posted By David Ziobro, Tuesday, March 12, 2013

This blog post is a reprint of an article from the February/March 2013 (No.105) issue of Mainstay, a regular newsletter produced by the Well Spouse Association (http://www.wellspouse.org/). Reprinted with permission.


"Well, at least they went quickly and didn’t suffer.” That’s what people say when someone dies. I understand what they mean. But she didn’t go quickly. No, it was a long slow steady decline. Did she suffer? No, with the pain meds, and her loss of memory, she didn’t suffer, but I did.

When we were told that the cancer had spread to her brain, the clock started to tick. Life went on as much as it could. She was able to do some of the things she enjoyed like reading, crafts, and needlepoint. In time, those activities became impossible, and TV and the two hours a day with her aide became her life. Our aide was a friendly young woman; they would sit and talk about all kinds of things, and they liked to look at our photo albums. Our aide was planning a trip to Disney World, and my wife really enjoyed helping her plan it. The trip ended up being scheduled the week after my wife passed away. Her aide was not able to attend the viewing or the funeral. It was almost like my wife planned it that way.



As time passed, we entered the beginning-of-the-end dates. When we were given the diagnosis, the doctor simply would not give us a time frame. The internet however gives you lots of information--we were looking at a 16 month time frame, give or take. I was finally able to get the doctors and the hospice nurses to give me a better idea after many conversations. They were all given with reluctance, and usually accompanied by "everyone’s situation is different.” When we hit the beginning of the possible time frame, it got interesting. By this point I had taken the 90 day FMLA leave from work, and I ended up taking another 90 day leave of absence as well.

As with most everything in her life, my wife exceeded expectations: she lasted 23 months. During the final 6 months of her life, we were in the "anytime” zone. Every morning was difficult for me. Was today the day? Remember when you had your first child and, inexperienced and fearful, you would walk into their room at night and listen for them breathing? Well there I was, going into her room in the morning wondering if this would be the day. I would hope upon opening the door she would move in some way so I would know right away. When she didn't I would walk up slowly and listen, a mixture of fear and then relief, followed by disappointment and then guilt. I had six months of that.

In the last year, my wife’s mental capacity diminished to the point where we could no longer really converse. We still talked, but I understood that she was not there, and our conversation would be forgotten as quickly as it started.

The good part was that she was totally unaware of her situation. She knew she was sick, but figured she’d get better and return to work soon. My wife had retired from her position as an elementary music teacher four years earlier. She began to ask about school and I would explain that she had retired. "Oh really, when did that happen…I don’t remember.” We would talk and it would be forgotten. Every night we would go through the routine about how she was retired. Each morning, we were up early and would go through the same conversation. I had to move her car to her mother’s house around the corner for fear that she would just jump in and drive away. She had not driven since her diagnosis in 2009. Then we had to hide the car keys for all our other cars. Notes on the mirror, on the door, nothing seemed to help. Sometimes she would call the school and arrange to get a sub. The administrative assistant, who knew my wife well, would handle these phone calls with patient understanding. It turns out she enjoyed just talking to her. The rest of the staff were also amazing; they understood and dealt with it.
Every morning was difficult for me. Was today the day?

So when someone says, "well, at least they went quickly and didn't suffer,” understand what suffering is. There are all kinds of suffering. My wife passed away 23 years after her diagnosis of breast cancer. She did better than expected, and did things her way. She once told me "I’m a difficult patient, I know that. It’s my life and I want to know what is going on. I don’t care if they think I’m a bad patient.” In reality, according to her doctor, she was a good patient. He understood why she was the way she was. When she passed, her doctor told me what a strong person she was. He also told me what a fantastic job I did in taking care of her. I tried the best I could. It was difficult. Her doctor gave me a big hug when he told me that. Men don’t hug usually. It was so special because it gave me the feeling that I did good. The patient is the one being treated; the well spouse is often forgotten. He was telling me I was not forgotten. That was special.

Dave Ziobro, Former Well Spouse

Tags:  caregiving  chronic illness 

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