Here is a prose poem by a member of our support group whom we'll call Anniel. She provides a nice glimpse of what our meetings are like.
. . . in sickness as in health . . .
I had thought to be first to leave since you were
the one called upon to do the caring, and you soon did
as you stood always by me.
Now I'm not so sure as you descend into your
own private hell of illness, PD -
I dreamed last night of a time when you ran up the ladder
while carrying two bundles of shingles on your shoulder
something you can no longer do.
I wasn't worried then but I do worry now -
all the "I" sounds above are not about "me", but about what
"we" are - in this together.
Yesterday we met with Parkinson's friends to share
news and humor (always mixed with pain) -
the only place where PD can be funny.
Sallie wants her PD to "just go away" but says so
with laughter and everyone laughs, too,
because they know PD doesn't "go away."
We laugh with Peter, who, like many others "freezes"
while walking forward. He can only move then
by walking backward.
Once at the airport he "froze" after clearing TSA, then
had to walk backwards all the way to his gate and
onto the plane - no one even questioned him.
Some PD people "freeze" but can be "unfrozen"- or
is it "thawed"? - by only a touch. Others must be led from
the front or pushed from behind.
Some "freeze" if they try to step on a stool, or step on a line
or crack, or maybe the opposite is true, they can only
walk if ON a line or crack. Crazy.
We discussed ways of coping with loss of balance, constant pain,
garbled speech, which medicines cause trouble for some
but not others, and the things doctors don't know.
Susan is newly diagnosed and wants to know if anyone
else has trouble with speaking, drooling, falling,
sleeping, vivid nightmares, leg cramps -
The three Dans, Deanna, Peter, Sallie and Bob answer as best they can -
Susan asks quietly, "Has anyone lost their sense of smell?" All
hands go up. She looks relieved.
After all this is only a "movement disorder" that
makes your arms "shake a little bit." I once heard a
doctor on the radio say so.
He evidently has not seen anyone in the throes
Of dyskinesia, or shaking from head to foot, or walking
by running rapidly on their toes and moving mere
inches at a time. Nor has he seen anyone who has not
slept more than minutes for what seems like months - as
they cry out for nonexistent help.
Just before leaving I briefly touch again on a matter that intrigues
me, one that PD people do not often discuss, even
amongst themselves, and certainly not with doctors -
"How many of you believe you were born with PD?" Eyes always
drop as almost all hands reluctantly raise. No one, and I do
mean NO ONE, will tell their doctor this.
If a patient did, would it matter to the doc? Or would he think the person
is assigning too much importance to tracing the cause of
his illness, or maybe think he's just crazy?
You see, no one knows what causes PD. There have been no real
advances in meds or treatment for nearly twenty years. Big things
are always just around the corner.
Until the Big Things happen, we live with what is. I hope you
know how much of this I share with you as I clasp your trembling
body in the night.