Wednesday, May 9, 2018 The Nugget Newspaper, Sisters, Oregon
11
Commentary...
Advocating for those with Parkinson’s Disease
By Jane Miller
Correspondent
Four years ago, my recov-
ery from shoulder surgery
was not going well. At a post-
surgical appointment in April,
2014, after unsuccessful
physical therapy, my ortho-
paedic surgeon said, “I want
you to see a neurologist.”
One week later I was told,
“You have Parkinson’s dis-
ease.” I was 52 years old,
not-long divorced, about to
lose my job, and gearing up
to begin an MBA program
at Willamette University in
Portland.
Parkinson’s disease affects
all parts of my life — my gait,
balance, depth perception,
vision, cognitive and execu-
tive language function, and
so much more. Life-numbing
fatigue, like walking through
deep sand in a rain storm, is
a daily companion. I can’t
read for half an hour before
the words trade places and
hide behind a layer of fog,
leaving behind headaches
instead of comprehension. I
can’t write because the letters
become microscopic by the
end of a paragraph. My typ-
ing becomes an indecipher-
able code.
This disease caused a
traumatic fall in December,
2016. The right of my face
was crushed, my nose disin-
tegrated, my skull fractured.
The socket of my right eye
was broken into a dozen free-
floating pieces; my right eye-
ball exploded.
They say Parkinson’s is
not fatal. It’s what happens
because of Parkinson’s that
kills us. Three surgeries later,
titanium plates and screws
hold my face together, my
right eye is a painted pros-
thetic, and my body’s immune
system is attacking my left
eye. I am terrified that soon
I’ll be blind.
My life has been drasti-
cally altered through no fault
of my own, and I’m not alone.
People with Parkinson’s des-
perately need a drug that will
not only decrease the symp-
toms that rob us of our lives.
We need a cure.
That is why I went to
Washington, DC, in March.
To urge our government
to increase its support of
Parkinson’s research. To join
300 advocates from around
the country for two days of
instruction, workshops, and
advocacy training prior to a
full day of meeting members
of Congress.
In Washington I was
exhausted. The constant mus-
cle tension of Parkinson’s,
anxiety, and pain made sleep
difficult. Monitoring medi-
cations and meals is vital to
avoid “off” periods, the times
when the medication wears
off and symptoms increase. I
spent hours being “on.” It’s
what I do. It’s always been
my job to make people laugh,
welcome them, watch out for
kittens.
As is often the case with
Parkinson’s, however, I
learned some valuable les-
sons. Number 1, it’s not my
job to do all of that all of the
time. Sometimes it’s my job
to relax.
I am also learning (2) that
it doesn’t matter what oth-
ers think. Most people don’t
notice when my right side
doesn’t work along with my
left but I am going to do pre-
boarding because I can’t put
my carry-on in the overhead
without dropping it on my
head, and I need more time to
get situated.
Learning No. 3: I have a
story to tell, and some will
be better off from hearing it.
They will know they are not
alone. They will know they
are strong. They will know
their story is worth telling,
too.
Learning No. 4: Just
because things don’t go as
planned doesn’t mean they
don’t go as planned. An
unexpected storm dropped
five inches of snow and shut
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No. 6: I can still communi-
cate. I may pause, stop, or
search. But I can communi-
cate, tell stories, and exercise
my love of language.
Learning
No.
7:
Parkinson’s is hard, but giving
up is harder. Everyone with
Parkinson’s disease has faced
painful fatigue, self-doubt,
and increased symptoms.
Though I came one term short
of earning that MBA degree
from Willamette University,
with help and encouragement
I became an advocate. And
we are doing some good.
The National Institutes
of Health (NIH) received an
increase in funding that will
help offset a decrease of 22
percent that occurred from
2003 to 2015. The Department
of Defense (DOD) finances
the only federal research proj-
ect on Parkinson’s disease,
and funding was increased for
this vital research. Funding
for the National Neurological
Conditions Surveillance
System was also approved.
This database will enable sci-
entists to track patterns and
focus research for all neuro-
logical diseases.
Year-round
541-410-4509
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down the Capitol. Advocacy
Day was spent in the cavern-
ous meeting room at the hotel
as advocates used whatever
method they could to make
our voices heard.
I began by calling
the offices of Senators
Merkley and Wyden and
Representative Walden.
Emailing each Oregon con-
g r e s s p e r s o n . Tw e e t i n g .
Posting updates on Facebook.
I rescheduled my meeting
with Rep. Walden for the fol-
lowing morning.
Learning No. 5: Risk
can bring reward. Joined by
Holly Chaimov, director of
Parkinson’s Resources of
Oregon, I was able to share
with Rep. Walden my experi-
ences and the need for a cure
for Parkinson’s.
Rep. Walden was gra-
cious, kind, and attentive
as I explained the impact
Parkinson’s has had on my
life. I used to be so smooth,
quick with a fact or a joke,
able to handle with ease the
stress of meeting with CEOs,
government officials, or 1,000
high school students.
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