Five years ago I was diagnosed with
Parkinson’s Disease (2010) and since then I have been seeing a neurologist
every six months. He prescribed
medications and tested my time to complete a few simple tasks as a basis for
future judgements on my progress. The
medications have helped and the doctor estimated that I could continue fairly
normal living for ten years.
The relationship between Parkinson’s and
“The Dance” is not so obvious. My approach
in this paper and in my life, is that although there is no cure for the
disease, there are little dance steps I can take to make Death wait a little
longer. This story deals with my
participation in the dance.
First, for those who have had no experience
with Parkinson’s, I will include a few lines from Wikipedia. The web site contents seem valid as they
parallel my own reading and experience with the disease.
“Parkinson’s
is a neurodegenerative disease. Movement is normally controlled by dopamine, a
chemical that carries signals between the nerves in the brain. When cells that
normally produce dopamine die, the symptoms of Parkinson’s appear. Currently there is no cure. You can live with
Parkinson’s for years. The symptoms are treated with medication.”
Symptoms include tremor, (my right hand
shakes), slowness and stiffness, impaired balance, rigidity of the muscles,
fatigue (exhaustion), problems with speech and hand writing, stooped posture,
constipation, drooling, sleep disturbances, a loss of the ability to smell and
difficulty swallowing.
Some of these terms seem inappropriate to
me. Take “tremor;” that could be the
movement of little leaves on a flower in a mild breeze. When I shake, I shake, sometimes very
vigorously. Call a spade a spade. Also the word “drooling.” This has the images of Frankenstein or
Dracula or a rabid dog. I may trickle or
dribble occasionally, and I hope that my beard hides it – but drooling, yuk.
All of this isn’t full-time unreserved misery. Doing projects and getting outside are my
main salvation. If I am building
something in the basement workshop, making a repair, digging in the garden,
cutting the lawn or shovelling snow I don’t shake and I walk quite normally.
This is also usually the case when I am reading and relaxed.
Stress is a major factor. My eating is getting slower and messier so a
restaurant meal is not a big treat. An
appointment with the doctor (I have five.), visitors sometimes, new people or
places can also get my hand shaking. Feeling depressed is common but usually
short lived. My hand-writing is terrible
but I read a good deal – recently about neuroplasticity. In my understanding, this is the ability of
the brain to reroute signals to different parts of the body and to find new
pathways around damaged areas.
I have a great partner, a comfortable
home and a fine view down Halifax
harbour, but it is in my home that I have the most trouble. It is where my balance and walking are most
compromised. It is a life of a million
half-inch steps accompanied by frequent mild crashes into walls, door frames
and the occasional one with a more severe landing. I have the bruises and stitches to prove
it. Essentially this performance has
three alternatives; first, my feet seem struck to the floor and I can’t get
started for a few moments; second, I am moving, but in short, shuffling steps,
taking a long time to go a few feet; and third, after getting moving and my
torso has some momentum, my feet stop and I am hurriedly grabbing for a door
frame, putting my hands out for a wall, trying to catch the back of a chair or
some other fixed object. As a variation
on this last stopping, I surge ahead on my toes and have a difficult time
getting my feet back down on the floor.
There is even a mysterious aspect to this. Doors, open of course, sometimes seem to
present a conceptual problem for the brain.
I can approach a door walking reasonably well but a foot or so away from
it my feet stop working and I have to grab for the door frame to avoid a crash.
Death looks on, waiting for the next
dance.
Parkinson’s even has a special sort of
dream. These lasted for about two years
after I was diagnosed. Thankfully they
seem to have stopped completely. Perhaps
I should explain the difference between regular dreams and Parkinson’s
dreams. In a normal person’s dream the
story in your mind is not usually connected to any bodily activity. With Parkinson’s there can be a very direct
connection. When this matter was discussed
with my doctor, he said that other patients reported fighting with tigers, as
an example. Exactly.
My dreams are usually trying to get
someplace with difficulties popping up.
With many of them there is a challenge, usually from a fierce animal. For the ones in which I become physically
involved they end up with me fighting the animal or occasionally a person and
the struggle wakes me. Just preceding
the struggle I apparently make some vocal noises which are me getting ready to
fight.
When these dreams started, Jan heard my
pre-struggle sounds and touched me to wake me up. In a typical dream I had been walking on a
path through a treed park. Off to the
left, the park changed into rough ground with tall grasses and trees. A large mountain lion appeared out of the
brush and ran toward me. A struggle
ensued and I woke up. Unfortunately when
Jan touched me, she became the mountain lion – and I struck at her. Since then when she hears odd noises, she
gets to the far side of the bed.
Over many months I have had a variety of
dream struggles. There have been tigers,
bears and at one point I was sleeping on a floor under a table when a swarm of
rats ran over me. A few of my battles are with people. In reaching out in my struggles I have
occasionally ended up on the floor beside the bed. This sort of thing has happened several
times. Once, to escape, I woke up
standing in the hall closing the bedroom door.
To try and avoid serious injury, my side of the bed frame has been
padded.
Foam pipe
insulation and duct tape
Probably the most unusual and most
embarrassing dream incident happened when we had company visiting us. Although I can’t remember how the dream
started, at the end I was being chased through a hilly and heavily wooded area. I ran down an old bush road to the top of a
steep valley, and plunged down the slope.
Thinking that, in the dark, I might frighten them, I decided to howl -
loudly. That woke me up, and Jan, and
one of our guests who came to the bedroom door to see if we were ok. Death is standing back laughing.
Depression is also common and for me it
usually happens in the morning and is made worse by my ambulatory
problems. I do not feel sick in any part
of my body, but all this shuffling and needing extreme caution to move anywhere
makes it worse Another part of getting
older is that I am having trouble seeing myself as this old man with a cane
shuffling and bumping into things around the house. Until about a year ago I could do almost
everything in the same way I had for my whole life – perhaps a little slower. Now, I feel that my body has let me
down. It has become an embarrassment.
There is one area of my mobility that
does worry me. At the moment, if I am
starting to do a crash, my reflexes and hand mobility are quite effective in
catching something to either stop or break my fall. Sometimes the “catching” is a very near thing
and I wonder to what extent my reflexes will deteriorate as I age even further. Some misses would allow my face or other
parts of my head to strike a sharp corner of a desk, a kitchen counter or
similar with serious consequences.
Depression, poor mobility and the possibility of a serious fall bring
Death dancing a little closer.
Fortunately, my depressed periods are
relatively short and I realize that I probably will feel normal in a few
hours. I am also doing a few things to
try and keep my physical strength up which helps with my walking, stability and
my feeling of wellness. Three mornings a
week I go for an hour to a nearby community centre that has the usual gym
equipment. Added to these regular
sessions I do gardening, lawn cutting and, in the winter, snow shovelling My weight is good and my blood pressure and
heart rate are at the low end of the normal scale.
There are a few obvious home security
fixtures that most seniors should consider.
In the shower I have installed a safety bar for steadying me when needed. Another feature of the bathroom is a grab
handle fastened to the wall opposite the toilet.
Two other installations have been
important. When I leave the bedroom for
the bathroom I turn left and six feet ahead is the top of the stairs. On several occasions in my shuffling and
mini-step travels I have come to a stop just before I get to the post at the
top of the hand rail and lunged forward.
Fortunately, so far, I have always caught the post and avoided a fall
that could be fatal. Now there is a rope
stretched diagonally from the post to a closet door-knob opposite the bedroom
door – a hand rail and a deflector away from the top of the stairs. It works.
Another threat has been the stairs going to the basement. There is a hand rail, but it doesn’t start
until half-way down leaving the top half dozen steps with nothing to hold on
to. A similar piece of rope to the one
used upstairs is tied to two large hooks screwed into the door frame at the top
and into a beam in the ceiling down below. This arrangement has been handy several times. Death is frowning impatiently.
Nylon
rope thick enough to give some grip
Although my
knowledge of neuroplasticity is elementary it has led to some interesting
experiments. The official science refers
to the ability to retrain the brain to send signals to the muscles through
channels developed after the normal routes have been damaged. At my level I am only trying to deceive the
brain, to trick it into mitigating some of my symptoms. For example I am aware that being involved in
a project; hammering, sawing, drilling and more, distracts the usual shaking
and mobility problems. My experiments
have tried to mimic these effects.
The first attempt was to reduce or
prevent my right hand shaking, particularly under stress. In these cases the stress could be induced by
a visit to a doctor, going to a meeting or simply having visitors at our
home. For this I chose a small, fine
threaded, bolt, lubricated it so that it turns easily with my fingers – and
there you have it. It is small enough to
not be obtrusive held in the hands and can be out-of-sight while the nut is
rotated back and forth. The brain thinks
it is working on an important project and stops shaking.
1/2” fine thread bolt – 1 3/4” long
My
second attempt to improve my mobility in the house was simply to wear sturdy
walking-shoes rather than the usual slippers.
Outside I walk fairly normally and my brain must think that, wearing
those shoes, I am already outside. My
walking in the house becomes nearly normal.
Even putting on my Tilley hat inside the house helps with the illusion.
Sturdy
walking-shoes and Tilley hat
A third innovation could be called
“aiming.” Our home has hardwood floors,
fairly short, narrow boards which have colours ranging from light beige to dark
brown. As I walk along I say to myself:
“light board, dark mark, end of dark board” etc. Although I
aim to walk on each named spot I don’t necessarily get to them. Just the idea that my feet have a positive
direction seems sufficient. This works
most of the time but coming to a door occasionally defeats my system. Death is frowning.
From my scanty knowledge it seems that
people who die from Parkinson’s disease itself gradually succumb to the
diminishing of muscle activity in the whole range of internal bodily functions
that keep us alive. It also appears that
large number die from peripheral situations and a preponderance of them are
from falls. With a fall come broken
bones, a loss of mobility and a loss of body tone and strength. Where a young person would heal and soon
return to normal activity, for older individuals healing and recovery are slow
and often impossible. Inactivity further
weakens both the muscles and the desire to do anything to reverse it. Infections and pneumonia also take their
toll. Exercise and muscle building on a
regular basis can minimise the consequences of a fall and assist with
recovery. A serious fall can be the
prelude to the final dance.
Death is my partner - on with the dance.
Sources Consulted
Doidge, Norman, M.D., The Brain
that Changes Itself, London,
Penguin Books, 2007
Doidge, Norman, M.D., The Brain’s
Way of Healing, New York, Penguin Group, 2015
Parkinson’s Society Canada,
Exercises for People with Parkinson’s
Parkinson’s Society Canada, Your
Guide to Treatments for Parkinson’s Disease
