"How incessant and great are the ills with which a
prolonged old age is replete.”
- C. S. Lewis
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.
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.
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.
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
"Friendship is unnecessary, like philosophy, like art... It
has no survival value; rather it is one of those things that give value to
- 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
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.
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. |