MY LIFE WITH PARKINSON'S
As April is Parkinson's Awareness Month, I felt it was an appropriate time to "come out" so to speak and write about my life so far as a "Parkie".
Overview
Realizing that Parkinson’s
disease is first and foremost a movement disorder there are, however, so many
complexities involved that it goes way beyond such a simple description, to the
point that its many symptoms is often classified as a “designer disease”. There are
an estimated 1 million people in the U.S. living with Parkinson’s disease and
more than 8 million people worldwide. The average age of those diagnosed with
PD is 60. I was 62 however and evidently have had symptoms since my late 40’s.
Symptoms which I just recently recognize as having been red flag indicators
that I had foolishly written off as a function of age.
There
is no single test or scan for Parkinson’s, but there are three significant
symptoms that help doctors make a diagnosis:
1. Bradykinesia - meaning slowness of
movement. It is one of the cardinal symptoms of Parkinson’s. (Bradykinesia plus
either tremor or rigidity must be present for a PD diagnosis to be
considered).
2. Tremor - Characteristically
occurring at rest, the classic slow, rhythmic tremor of Parkinson’s disease
typically starts in one hand, foot, or leg and eventually affects both sides of
the body.
3. Rigidity - refers to a
tightness or stiffness of the limbs or torso.
My tremors were first noticed in my early fifties
when the twitching started with my left-hand thumb and index finger. They have
progressed within the last two years to the right hand and leg. It is
troublesome when using a computer mouse or when drinking a cup of coffee
becomes challenging. Eating with a fork is quite an event as well. Sometimes it
is difficult keeping the food where it needs to be. Too often some of my meal
ends up either in my lap or on the floor . . . it’s a good thing we have a dog.
Late 2019 was the point in time when my
Parkinson’s disease notably revealed itself. Up to that point, there were a few
indications which only now have I come to recognize were red warning flags of
PD. Parkinson’s disease is called a designer disease primarily because no two
‘parkies’ share the same symptoms. Ever the overachiever, I have so many of
them, not all of which are typical, but I do have all three of the cardinal indicators of
PD!
Resting Tremors: For many years,
my left thumb and index finger would twitch. I was mistakenly told by several
doctors not to worry about it as essential tremors are not unusual. This was
without any actual type of clinical assessment being performed or medication
prescribed. It was not until, during a routine physical, our family primary
care physician questioned the twitching, conducted a couple of clinical tests
and recommended that I see a neurologist. The rest, as they say, is history.
Bradykinesia: the saying is
that hindsight is 20/20 and I only now have I been able to recognize the subtle
hints of the earliest manifestation of the disease.
For many years I had been a wildland
firefighter. Each year I was required by the forest service to take a “pack
test” which consisted of walking three miles in forty-five minutes carrying a
forty-five-pound pack. I knew my walking pace was slowing down after just
barely passing my very last one. My 2015 test came in at forty-four
minutes-forty-five seconds. Prior to that my test times were for many years,
usually much closer to 40 minutes. I recall during this test a forest patrolman
gave me some on-the-fly coaching which, in hindsight, was revealing . . .
telling me as I passed through the check-point he was monitoring to “Swing your
arms. You’re not auditioning for the walking dead!”. What I do know now is that
lack of arm swing is a PD indicator and there was and is a definite reduction in my right
arm swing. I feel as if my arms and legs are weaker and that there is
considerable pain when I try to perform what had always been a routine task . .
. something as simple as putting on a pair of jeans or sneakers. I also no
longer have the typical “New Yorker’s stride”. My walking pace has slowed
considerably, especially when I am not moving on a flat, level surface.
Rigidity: during my college years I played middle infield and
was known to have what was commonly referred to as a “shotgun arm” (In baseball jargon,
“shotgun” refers to a powerful throwing arm). Several years ago, I
discovered that I was no longer able to throw a baseball with the same velocity
or coming anywhere close to the distance I was used to. Granted, my age would
probably account for some reduction in speed and distance, however the
difference was obvious. Rigidity, especially in the early, undetected stages
of the disease, was incorrectly attributed to a rotator cuff injury when
the issue was actually determined to be what is known as “frozen shoulder” (a common musculoskeletal disease of
idiopathic Parkinson’s disease that causes long-term pain and physical
disability). Physical therapy was prescribed with zero benefit. Currently
I experience stiffness including both muscle and joint pain throughout much
of my body. It is particularly noticeable in my legs, right arm, fingers, and
hands – all of which no longer seem to work properly. The pain and stiffness associated
with my Parkinson’s was affecting muscles and joints, which were in the absence
of any real physical injury.
Movement
Disorders
The issues I have in
controlling what had always been normal, unconscious movements are as
troublesome as they are inconvenient. I regularly encounter the following:
o Smaller steps, slower speed.
o A narrow base of support, meaning my feet
remain too close together when initiating a step.
o Absent arm swing on the right side of
my body.
o Extreme difficulty pivoting and/or
turning.
o My feet tend to land flat on the floor
with each step instead of on the heel, leading to shuffling and falls.
o Festination or shuffling - quick,
small, involuntary steps forward.
o Retropulsion - quick, small,
involuntary steps backward – usually only when exiting our personal vehicle.
Freezing of Gait: This was the issue that prompted an appointment
with a neurologist. The temporary, inability to move, seems to happen at any
time, though it tends more often to occur when initiating a step, turning and
navigating through doorways or narrow passageways. I fully agree with what has often
been described as feeling as though one’s feet are glued to the floor. It can be
particularly embarrassing in a public situation but has the potential to be a
more serious problem, as it has resulted in numerous incidents of falling. It feels as
if my body is not obeying my brain's commands which I find it to be extremely
frustrating.
Dystonia of the foot: Dystonia is a symptom of Parkinson's disease
which is also a movement disorder on its own, marking painful, prolonged muscle contractions
causing abnormal movements and postures. Experts estimate that more than 30 percent of people living
with Parkinson's disease may experience dystonia as a
symptom or as a complication of treatment (dystonia can occur when medication is
wearing off). In my case, a painful cramped foot is the telltale sign of
dystonia. My right foot feels fine when sitting but develops foot inversion
(turning in of the foot or ankle) when trying to walk or stand. Small
steps and twisting makes initiating
a step awkward and results in “start hesitation”.
Non-Motor Symptoms
“Although Parkinson’s disease is primarily considered a motor disorder, several studies have shown non-motor symptoms are common across all stages of the disease, however, these symptoms are often undiagnosed because patients are unaware of the link to the disease and, as a result, they may be under-treated.”
Sleep disturbance: Insomnia - I generally have no problem falling
asleep. The difficulty in my case is remaining asleep. I only average 6.25
hours per night. 20mg of melatonin helps to occasionally achieve an additional
hour or two. I do not suffer from rapid eye movement sleep behavior
disorder or restless leg syndrome . . . two sleep disorders that can
affect those with PD.
Breathing Issues: Although James Parkinson, in 1817, described breathing abnormalities in
his “Essay on the Shaking Palsy”, there has been limited research on this
important non-motor symptom. I have had shortness of breath since late 2016. I’ve taken numerous tests
- chest x-rays, echocardiogram, spirometry, and of course every allergy test
known to modern medicine, all of which came back with the same result: negative
pathology. I was initially diagnosed with asthma, but the allergy specialist is
now 99.9% certain my breathing disorder is a result of PD.
An interesting read for an issue that affects me and many others with PD: http://www.outthinkingparkinsons.com/articles/breathing-disorders
Vocal chords and swallowing muscles: PD dystonia causes my voice to slur, and at times sound softened,
hoarse or breathy during certain parts of the day or in high stress situations.
Originally, I thought that my hoarseness was due to extremely low humidity . .
. until I was diagnosed with PD.
Effects on Vision. I have
had a variety of complaints related to my vision such as trouble focusing at
close range, but more frequently dry, irritated eyes which is followed by extreme
tearing. People with Parkinson's can experience this for several
reasons, including decreased blinking due to impaired reflexes. Infrequent
blinking can
cause dry eyes which stimulates the lacrimal (tear) gland resulting in
excessive watering.
More: https://www.michaeljfox.org/news/ask-md-vision-and-parkinsons-disease
Micrographia (small handwriting): A non-motor symptom. Within the past two
years, I have noticed that my handwriting has become exceptionally small
and illegible. Actual note taking with a pen or pencil is now practically useless
and my signature has gone from normal to what has become basically just a
squiggly line. I am sure that the nuns who taught me cursive writing would be
apoplectic.
Stress,
Depression and the Effects of Cognitive Changes Fortunately, I am still unaffected
by depression or cognitive changes. My neurologist believes that I am not
really a candidate for Parkinson’s dementia . . . although I have no clue as to
what he uses to base that opinion.
Stress is known to be a challenging,
but modifiable risk factor for Parkinson’s disease progression. Research
suggests that stress events may be a factor which aggravates and intensifies
the symptoms of PD. Studies indicate that stress damages dopamine cells,
resulting in more severe parkinsonian symptoms. The findings suggest that programs
that provide stress reduction tactics may be an effective intervention in the
disease.
At this point I have no clinical
signs of depression although I admit to having been very frustrated on occasion
by my inability to do those things I had been able to do for the prior 60 plus
years, albeit briefly. I do remain positive about where I am in life, regardless
of the situation. As Winston Churchill said “attitude is a little thing that
makes a big difference. Fortunately, I am to married to a true angel who has
been my caregiver and has provided such tremendous, loving support.
Thankfully, at this stage of the game I have no cognitive
issues other than occasionally trying to remember a name of a casual
acquaintance or fumbling a bit to find just the right word. Every evening I will do word
puzzles which I believe help me to remain relatively sharp and for most of my
life I have been a voracious reader. In addition, I am also involved with a
computer simulation that requires highly complex mathematical calculations.
The
Five Stages Of Parkinson’s Disease
Parkinson’s disease impacts people
in different and unique ways. Not everyone will experience all the symptoms of
Parkinson’s, and if they do, they will not necessarily experience them in quite
the same order or at the same intensity. There are typical patterns of
progression in Parkinson’s disease that are defined in stages. I am amazed by
how long I lived with stage one and how many years it took to develop into
stage two and how quickly it advanced to stage three . . . I believe that the
symptoms indicating a faster progression of change began in 2015 and lasted
through early 2020, when the freezing of gate was first apparent.
The
change from two to three was even more rapid in that within a few months I had seemingly ‘progressed’
a stage. My neurologist puts me at mid-stage, which I might agree with to some
extent. My guess, based on the descriptions of each of the five stages, is that
I am at a late stage two or early stage three. I have read that it is possible,
with the right guidance, exercise and changes in lifestyle, to drop back a
stage. That is my ultimate goal.
Stage
One During this initial stage, the person has mild symptoms
that generally do not interfere with daily activities. Tremor and other movement symptoms occur
on one side of the body only. Changes in posture, walking and facial expressions occur.
Stage 1 constitutes the mildest form of Parkinson’s disease. During the stage
1, the patients may experience symptoms, but the mild ones and do not interrupt
daily tasks or one’s lifestyle. In fact, symptoms during the first stage are so
mild that both doctors and patients often missed. However, the family members
and the friends may observe changes in the way you walk, your body posture or
your facial expressions. Tremors at a specific side of one’s body are the
distinct symptom associated with stage 1 of Parkinson’s disease. In this case,
the doctors give prescribed medicines, which work in an effective way to reduce
the symptoms and allow individuals to lead a normal life.
Stage
Two Symptoms start getting worse. Tremor, rigidity and other movement symptoms affect both sides
of the body. Walking problems and poor posture may be apparent. The person is
still able to live alone, but daily tasks are more difficult and lengthier.
Stage 2 implies the Parkinson’s disease in its moderate form, and it has
relatively higher noticeable symptoms than the ones take place in the previous
stage. This means, tremors, stiffness and trembling problems become noticeable
and changes in various facial expressions take place. While stiffness of
muscles prolongs the completion of any task, stage 2 never causes balance
impairment. Instead, the patients may deal with increased walking difficulties
and witness changes in their postures. During stage 2 people feel symptoms of
speech difficulties to some extent.
Stage
Three Considered mid-stage, loss of balance and slowness of movements are hallmarks. Falls are more
common. The person is still fully independent, but symptoms significantly
impair activities such as dressing and eating. Stage 3 indicates middle stage of the Parkinson’s disease, as
it indicates a big turning point associated with progress of the disease.
Despite, the symptoms in both stage 2 and stage 3 are more or less same; but in
your third stage, you may likely experience reduced reflexes and loss of your
physical balance. Overall, your body movements become slow. Because of this,
the problem in its third stage affects people significantly, but still allows
them to complete their daily tasks.
Stage
Four At this point, symptoms are severe and limiting. It’s
possible to stand without assistance, but movement may require a walker. The
person needs help with activities of daily living and
is unable to live alone. Independence of people separates when they enter to
the stage 4 from the previous stage 3 of Parkinson’s disease. Although, a
person in stage 4 of Parkinson’s disease may stand easily without any help; he
requires assistive devices, especially a walker to go with physical movements
without facing any difficulty. Most of the people will not be able to live
their lives alone during stage 4 of the Parkinson’s disease, as they deal with
significant decrease in the physical movements and reaction times. According to
doctors, keeping alone the patients of stage 4 Parkinson’s disease may not
perform their day-to-day tasks.
Stage
Five This is the most advanced and debilitating stage. Stiffness in the legs may make it impossible to stand
or walk. The person requires a wheelchair or is bedridden. Around the clock nursing care is generally required. The person may experience hallucinations and delusions.
