In Sickness as in Health

by Anniel   4/21/14

I had thought to be first to leave since you were
the one called upon to do the caring, and you did
as you stood always by me.

Now I’m not so sure as you descend into your
own private hell of illness, PD –
Parkinson’s Disease.
I dreamed last night of a time when you ran up the ladder
while carrying two bundles of roofing tiles 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 stand
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 discuss ways of coping with loss of balance, constant pain,
garbled speech, which medicines cause trouble for some
but not others, 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 someone 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 someone 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 assume the person
is assigning too much importance to tracing the cause for
his illness, or maybe think he’s just crazy?
You see, no one knows what really causes PD. There have been no
real advances in medicines 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.
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4 Responses to In Sickness as in Health

  1. Timothy Lane says:

    A hereditary form of deterioration of the cerebellum, which has much the same symptoms as Parkinson’s disease (and when my grandfather had it, that’s what it was thought to be) runs in my family on my mother’s side. Both my brother and sister have it (though hopefully I’ll escape it; in theory it should be evident by now if I had it), as did my mother. In her case it reached the stage where she was no longer understandable in speech, but was fortunate that my sister (a nurse, now retired) was able to take care of her.

    So I know something of what it’s like to face that challenge. My sympathies.

  2. Anniel says:

    Thank you for your kind thoughts. I was hoping to convey, perhaps, a training course in Parkinson-like conditions because we didn’t know ourselves the smorgasbord that is lumped under PD. And, of course, I wanted to give a sense of the commitment of love in whatever life brings.

  3. Anniel says:

    I sincerely hope you have dodged the challenge in your own family history. We all have such challenges in life, but even they can be life affirming. People can blossom in the strangest of circumstances.

    • Timothy Lane says:

      In theory, if I were going to come down with the Family Curse, we’d know by now. Usually it starts early (one nephew already has it, and probably knew about it by age 30; my brother was in his early 30s when he was diagnosed with it). But my sister only learned about her case several years ago (and she’s 5 years older than I am). But she found out because she was developing early symptoms (which is why I delivered the portion of my mother’s funeral service that had to be done by a family member; I was the only child left with a clear voice). We can hope, but only time will tell.

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