chosh
Wednesday, December 05, 2001
To every thing there is a season, and a time to every
purpose under the heaven. A time to be born, and a time to
die; a time to plant, and a time to pluck up that which is
planted; a time to kill, and a time to heal; a time to break
down, and a time to build up; a time to weep, and a time to
laugh; a time to mourn, and a time to dance; a time to cast
away stones, and a time to gather stones together; a time to
embrace, and a time to refrain from embracing; a time to get,
and a time to lose; a time to keep, and a time to cast away;
a time to rend, and a time to sew; a time to keep silence, and
a time to speak; a time to love, and a time to hate; a time of
war, and a time of peace.
It's time for me to wind up my public journal and focus on some private thoughts
for a while. This experience has been tremendous therapy and a confidence-
booster for me. I have enjoyed it very much and want to thank all of you who
gave me input over the last couple of years. I will continue to write and may
return at some point, but for now, the season is over. See you in all those old
familiar places.....
Wednesday, November 21, 2001
For the last couple of months I have been participating in an over-fifties
exercise group at the Y. The group is not delineated by age as much as by our
varying medical conditions. (diabetes, heart, arthritis, osteoporosis, and all
those other “senior” diseases). Healthy body parts put together, we probably
total two or three people.
We exercise in the “studio”, a lovely room, into which the rest of the
exercisers look, through the glass that surrounds it. Fortunately through the
closed door they do not hear our grunts and groans but they certainly must their
get their daily entertainment from our mimed version of aerobics.
The instructor is patient, letting us get away with all kinds of excuses. A
couple of weeks ago two women announced that they don’t “do mat work”. She
barely blinked an eye and went on with weights, which a number of us don’t do
either. Some don’t put their hands above their heads. Some don’t walk the
track. Others don’t do anything “dance-like”. In fact, at any given moment half
the class is sitting out. We don’t waste time though, exercising our lips by
getting to know each other in time for our social period, which follows class.
Our music is not the booming, screaming noise that comes out of the rest of the
gym, but lively old ditties that have a sustained beat for us to follow. We
love marching to Sloop John B. We bounce balls in time to Abba. We swing our
hips to our favourites from the fifties and sixties.
Discussions about lifestyle and health, along with a blood pressure check follow
the class. The Y values us as their senior input. Lol
If anyone had even suggested to me twenty years ago that this is where I’d be, I
would have laughed them out of the room. And I would have laughed spontaneously
without wondering if there was a washroom nearby…. But that’s another story.
Tuesday, November 20, 2001
A week ago I listened to a movement disorder specialist speak at our annual
conference. She was an articulate and powerful speaker. She spoke the truth, I
think, as she sees it, but in a blunt, dispassionate way that left her audience
with no hope of an imminent cure or even treatment for the Parkinson’s future.
When she finished speaking there was dead silence in the room for about ten
seconds. People around tables were physically slumped and you could feel the
void left by her talk. Hope had been removed and that is a very positive
motivator in our lives. The energy left the room.
In contrast, yesterday I attended a luncheon in a place where you could sense
the energy directed to the search for a cure. It was so intense that you could
feel through the conversations around the room. Dynamic people, many with PD
themselves, doing their best to actively participate in ways to find a cure.
Many were inspirational in their conversations with us. People not only had
hope-
they convinced us of the certainty of a cure- maybe not today or tomorrow, but
they will make sure that one is found. That commitment to finding a cure was
more energizing than anything I have experienced recently.
Many of the same people were in both places. It’s funny how some experiences can
totally drain your batteries, while others re-energize you. We do need to hope.
Thanks to Lynda McKenzie and to Jack and Mary Clark and all those who were
present. The energy that you inspired will be passed along and may revitalize
some of those who have been less than hopeful. I wish everyone with a PD and a
commitment to a cure could have been there yesterday.
Saturday, November 17, 2001
This morning a group of us from our support group held a session for people who
were newly diagnosed and/or their partners. We called it "Where do We Go From
Here" and planned carefully for our first session. We wrote a short two-session
program and tried to design it to be flexible according to group needs. We had
twelve participants sign up. We all tried to remember what it was like to given
this news and how we felt, reliving our own diagnosis again. I think we were
also all very nervous about this morning, anticipating all sorts of things that
might go wrong.
We learned that when you put a group like this together and make Pakinsons the
common factor, you really don't have to do much work at all. The group does it
all for you. Within five minutes this seemingly diverse group had introduced
themselves to each other and had started sharing experiences. When we began the
formal meeting they were already warmed up and ready to talk. Their issues are
clear: medication, depression, support, symptoms, confidence.... and so on.
Their needs are even clearer - to share their stories and concerns with others
in a similar postition.
They want to talk. They want to hear they are not alone It was quite a
rewarding session for all of us, I think, and there will be an encore in about 2
weeks based on their questions. One of our members stated that our goal in
these seminars should be to make people feel better when they left than when
they came in. Judging by the chatter, this experience helped.
Tuesday, November 13, 2001
Someone in MGH recently posted about being a person first and a person with PD
incidentally. I have been carrying that thought around for a few days and I
find that, for me, the lines of distinction have become very blurred. I am not
sure that I can really separate myself from the disease. Parkinson’s and I seem
to have become a blended unit – not good, not bad – just is. We are often
reminded that “we are not the disease and the disease is not us”, but I am not
sure how true that is. Although personality is not lost to the disease, I
believe that it inevitably strongly reflects presence of the disease. The core
of my “self’ remains intact but the way I interact with the world and even with
myself is influenced by the impact of Parkinson’s on my life. It is like a
filter through which everything passes. Therefore I deal with the world as
a “personwithparkinsons.”
I don’t know whether any of this makes sense, but maybe I’ll understand what I
mean when I read it. Thoughts like these often bounce off the brain walls for a
few days before they come together. Sometimes they never do.
Tuesday, November 13, 2001
I don’t like the months of November and February very much. Neither of them
have ever done anything to me, so my dislike is not based on fact. It is likely
relates to some deep- rooted bias that I keep bottled up inside me - lol. It
just sits there quietly until those months arrive and then quite suddenly we’re
back to the “same old, same old. ” I thought it might be therapeutic for me to
discuss November with you and get it out of my system. Please understand that I
only refer to an Ontario November and my comments do not reflect on any other
Novembers around the world. In fact, if November in your area is different,
please send me a ticket and I’ll try to go round and compare. Not a plane
ticket however, because, in light of current world events, I am scared to fly.
Reasons why I do not like November
It’s dark
It’s the beginning of long winter
It rains, snows, sleets, freezes, blows and is cold
The landscape is denuded and ugly
There is no holiday for us in November
The stores start going Christmas crazy
You have to commit to what you’ll do on the holiday
Another year is ending without a cure in sight
Another year is ending without a cure in sight. ( that counts for 2!)
Another year is ending.
Friday, November 09, 2001
Cognitive Dysfunction - two words that invoke horror in many of us. Because
formal neuropshychological testing is not routine, this kind on deficit often
goes unnoticed and untreated, especially in the early stages of Parkinsons. A
new book says that "people with Parkinsons who undergo such testing (neuropsych)
often demonstrate a variety of minor abnormalities when compared with age-
matched people without Parkinson's Disease" It also states that "approximately
20 to 25 percent of people in the advanced stages of the illness develop
dementia". I don't like those odds very much. Scary stuff to most of us, and an
area to stay away from, hopefully permanently. A year ago a friend who is a
psychometrist offered me this kind of testing and I declined. I thought I didn't
want to know, but I have wondered and worried.
Today I tested that fear and was part of a research study that involved
neurophychological testing. These kinds of tests involve memory, puzzle
solving, problem solving, reading comprehension, abstract thinking, insight and
judgement. I was a lot more nervous than I am before medical tests and as
usual, the fear of failure was ever-present. I have this inescapable feeling
that failure in this area would be catastophic for me. The testing was intense
and tiring. But I don't feel tired mostly because what I heard put me on a high
for the day.
Now I can breathe again. I do not have any major neurological deficits. My
brain's "executive functioning" is intact. Minor attention and concentration
deficits are attributed to anxiety and sleep problems, but that is not for sure.
I did my numbers and letters forward and backward and I passed!!! Not like
passed in school but passed in life. One big fear reduced in magnitude to a
manageable level - not necessarily forever but for now. I feel really happy
about the results of today's testing.