Another year has passed, another year that I live with
Parkinson’s Disease, making it officially 3 years tomorrow since I was diagnosed. Like
I did so far on every anniversary since this diagnosis, I will describe the main thoughts, with regards to this illness, that occupied me during
the last 12 months. But first, a quick recap: year 1 centered around coming to
terms that I have Parkinson’s and year 2 was focused on gaining stability and
being social about it. You can read more about these in my older blog entries
in this blog.
Year 3, well, I would say that, in essence, two
questions sum up everything that was, and still is, my major struggle with this
disease: Since when do I have it and when and how will it all go down?
So, since when do I have PD (Parkinson's Disease)? As
mentioned before, officially since 3 years tomorrow, but obviously I didn’t get
it on that day. So, then when was it? I cannot say for certain, but I assume
quite a while earlier. I base this on information like this one from Wikipedia:
“Changes in perception may include an impaired sense of smell, sensation of
pain and paresthesia (skin tingling and numbness). All of these symptoms can
occur years before diagnosis of the disease.”
I started to have numbness around the time of diagnosis, but I had a strange
and reduced sense of smell since many years earlier.
Also, it states that there is “…an effect of nicotine as a
dopamine stimulant. Tobacco smoke contains compounds that act as MAO
inhibitors that also might contribute to this effect.” I have smoked for over
20 years prior and only quit 2 years before being diagnosed!
An additional
indicator for having the disease was my guts feeling
that something in me was changing, leading to a strong believe that I was going
to die. This in turn caused a "professional" evaluation of me as being depressed, which was probably true, but only a symptom of PD and not the main issue. But nobody dug in that deep at the time.
My usual conclusion to the “since when …” question is: who
knows, probably since between 5 and 25 years! You may think that it is not
important to know this number as what is done is done, but the answer leads
directly into my other main question of this last year, namely “How much longer
do I have, and then what happens?”
OK, I cannot change the past, but I can influence the
future, or so I choose to believe. Exercise, good medication, a good diet, low stress (yeah right, that
will happen), and a positive attitude all can help to stretch the progression
of the illness. But the key is, it is a progressive illness with currently no
cure (and none in sight). And sadly, there is also no formula that can be used to calculate the progression; it behaves different for each person. If I were
to know that in so-and-so years I will be in such-and-such shape then I could
prepare myself for it, by one means or the other, but no such luck.
So, almost daily, ok, probably multiple times daily, I ask
myself at least one of the following questions:
Did I just see a new symptom of progression?
How much longer can I work? Should I quit working now?
Am I wasting my last few good years?
What will happen to me when it gets worse? And what symptoms
will I develop?
When will I become a burden to my wife and children (besides
being the pain in the rear that I am already anyway, haha)?
And, as I am by profession (and talent) an analyst, I of
course also have to face the elephant in the room and ask myself the question
(on a purely analytic and logical basis) if suicide should be an option.
I know this all sounds grim, but let's be real, this is no fun disease! I
am currently doing rather well, but I know that today is the day when I am in
the best shape of my remaining life. Every additional day will be marked by yet
even more of my few remaining dopamine producing cells dying, every day will
see some minute decline, every day brings me closer to the end.
This all may be hard to understand for someone who does not
have Parkinson’s, but my fellow sufferers will most likely be nodding when
reading this blog. Although our symptoms vary, and the progression for each one
of us is different, we nevertheless have an invisible bond that connects us, no
words are needed to know how much a fellow Parkie (that’s what we call
ourselves) is suffering.
I wish I could present you a more optimistic outlook, but
fact is: The End Is Not Pretty! The question is only when will it
happen.
In the meantime, let’s see what year 4 will bring!
Thanks for reading,
