Dealing daily
with stuttering is a tough struggle. In addition, coping daily with
Parkinson’s disease, type 2 diabetes, severe back pain, mobility
loss and fatigue increase are overwhelming. So overwhelming that I
ponder these questions daily: Is this life worth living? My answer
thus far is yes with reservations. My reservations are: How much of
a financial and physical burden will I be to my family as I age and
the symptoms associated with all of my disabilities become more pronounced?
When do I say enough and end my life with dignity?
I have written rather extensively on my travails with stuttering.
Therefore, I will not cover it here. I am praying that it will not
get worse as I age and deal with Type 2 diabetes, Parkinson’s
Disease, and other aging ailments
My physical life began going downhill three years ago, when I started
limping on my left side. At first, I was not sure what was happening.
At first my limp was barely noticeable. However, gradually it became
more apparent. Additionally, my hands and feet started shaking. The
shaking made it difficult to dress myself. For decades, I showered,
shaved, dressed myself and went to the toilet in under an hour. That
time was being extended by 20-to-30 minutes. Just putting on my socks
took more than five minutes Other challenges included, I started stumbling
and experiencing repeatedly severe pains from my left knee to my toes.
Finally, I decided enough! I searched the internet for a neurologist
in Fairfax, VA. I also searched for a physical therapist. I found
Dr. Suneetha Manem and physical therapist Kevin Linde.
My first visit to Dr. Manem was informative. After listening to me
describe my physical condition and examining me, I was told I had
a neuromuscular condition that could not be determined at the time.
I was given a prescription and told to return in a month. The medication
(Mirapex) stopped the shaking. It did not do anything to stop the
limping. For pain I was told to take either Aspirin, Aleve or Tylenol.
At my next doctors’ appointment, I was given another examination
and my doctor suggested that I read up on muscular diseases. I was
told to return in three months, sooner if I needed. Between doctor’s
visits, I devoured material on the web on neuromuscular diseases.
I pictured the worst case scenarios for my future. I did not like
what I read about various neuromuscular diseases, including Parkinson’s
disease.
I was told during my third doctor’s visit that I had Parkinson’s.
The announcement was shocking. Before I left, my doctor and I discussed
ways to control my balance. She suggested that I consider buying a
cane to help me walk, a brace and to buy a wrist band to support my
wrist when typing and doing other work. She recommend that I start
physical therapy and wrote a prescription for the PT. When I got in
my car to drive home, I was sweating. I was scared. I was angry.
Parkinson’s disease (PD) is a chronic and progressive movement
disorder, meaning that symptoms continue and worsen over time. Nearly
one million people in the US are living with Parkinson’s disease.
The cause is unknown, and although there is presently no cure, there
are treatment options such as medication and surgery to manage its
symptoms.
Parkinson’s involves the malfunction and death of vital nerve
cells in the brain, called neurons. Parkinson’s primarily affects
neurons in the area of the brain called the substantia nigra. Some
of these dying neurons produce dopamine, a chemical that sends messages
to the part of the brain that controls movement and coordination.
As PD progresses, the amount of dopamine produced in the brain decreases,
leaving a person unable to control movement normally.
The specific group of symptoms that an individual experiences varies
from person to person. Primary motor signs of Parkinson’s disease
include: tremor of the hands, arms, legs, jaw and face, bradykinesia
or slowness of movement, rigidity or stiffness of the limbs and trunk
and postural instability or impaired balance and coordination.
I discussed my condition with my wife Lisa. She did not panic. She
offered words of encouragement and said, “We shall go through
this together. Our children Faith, Sean and Brandon will stand by
you.”
I started physical therapy soon after I left the doctor’s office.
My PT Kevin Linde read the prescription and discussed my program.
My left leg and foot were painful and I had limited motion in my leg.
I had a stiffness in my left wrist and fingers. I was having trouble
maintaining my balance. Kevin explained to me how we would confront
my challenges over the next many months and longer. We started my
physical therapy that week.
My Four Falls
One of my great challenges is maintaining my balance while walking.
In about 10 months’ time, I have lost my balance and fallen hard
four times. The first time I fell, I was walking my dog. I had a long
leash, and Daisy wrapped her leash around my legs and started running.
I fell forward to the ground and fractured my right elbow. It took
six months to heal. I use a short leash when walking Daisy.
While my elbow was healing, I lost my balance on a raining morning
while on my morning walk and fell again I severely injured my chest.
I had a huge black and blue mark for months on the right side of my
chest. The injury was extremely painful and it hurt when I laughed,
bent over or picked any up weighing more than 1 pound. X-rays revealed
internal bruising. I stopped taking my morning walks in the rain.
My third fall happened in our home. I lost my balance getting out
of a lazy man’s chair, and I landed on the floor. I injured my
right kneecap and the area above my kneecap. This happened in November
2012. I still have pain. Again X-rays revealed internal bruising.
I stopped using the chair.
I have a tendency to shuffle my feet forward when I start walking
with my cane on a morning walk, Last December I was walking down a
hill and started sliding. I could not stop and fell forward. I rolled
down hill about five times before I stopped. I scraped my right shoulder
in half a dozen places. When the doctor saw my arm, he said, “What
feline attacked you?” It took three months for all the scrapes
to heal. I am careful in choosing my hills.
Freezing
Mobility is important to me. It enables me to travel short and long
distances. It gives me independence. It enriches my quality of life.
It allows me to go to church, fish, go to movies, visit museums, attend
parties, accept invitations to ceremonies, do face-to-face interviews,
dine with my family, visit ballparks and play with my youngest son.
To keep the muscles moving and strong in my legs, every morning (except
when it’s raining or snowing), I leave my home around 6:30 and
return 35-to-40 minutes later. I have six different routes and I take
a different one daily so I will not get bored. Some mornings I wear
my brace and others I don’t. I wear my brace when my leg is weak.
Most times it is easy to put the brace on. Other times I need assistance.
The brace is 16 inches high and covers 3/4 of my foot. The brace serves
four functions. The first is it gives me stability. I have never fallen
or stumbled while wearing it. The second function is it gives me mobility.
Sometimes, I can’t walk without it. The third function is it
strengthens the muscles in the leg. Lastly, it helps me to remember
to walk in a heel-toe manner. Often when walking my leg will freeze
on me. To resume walking, my toes want me to push off on them so I
would do a toe/heel gait. A toe-heel gait puts me off balance and
freezes me.
One of the causes of freezing is sitting longer than 45 minutes. I
set my cell phone to vibrate every 45 minutes. When my cell phone
vibrates, I stand up and walk around for 10 minutes. It does not matter
whether I am in a meeting, at a movie, in a restaurant, or in church.
More than a dozen times in a year, while walking by myself, my leg
froze. This happened in my bank, in several restaurants, in a movie
theater, in a Metro station, on my morning walk, exiting a Safeway
food store and walking to my car in a parking lot. Once, as I was
stumbling to my car in a parking lot, I was stopped by a policeman
who asked to see my driver’s license. He thought I was drunk.
I showed him my license. Next he asked me to take a breathalyzer test.
I did. Nothing registered. When my leg freezes, the rest of my body
freezes. I am a human stature. When people see me they asked, “Mister,
do you need help?”
If I really do need assistance, I say yes. If I don’t, I say,
“Thank you for the offer, but I can do this.” More women
have offered to assist me than men.
My response is, “Thank you, but I can do it.”
At least three times, I have been wrong and needed help. Twice, I
have been lifted off the ground and carried to a bus shelter by men
who weighed more than 300 pounds. One of them was a college wrestler.
The other man was a Virginia Tech lineman. Once a Fairfax City worker
put me in his car and drove me four blocks to my home.
The freeze can last from 30 seconds to 15, 20 or 30 minutes. During
the freeze, both legs lock. Either I wait for the freeze to thaw or
I use an exaggerated walk to propel myself forward. The exaggerated
walk involves, with considerable mental effort, picking my right foot
high off the ground and extending it as far as I can with the left
leg following. I can take six steps or 50 before the freeze disappears.
Another trick to unlocking the freeze is turn around and walk backwards.
My leg unfreezes, and I can walk quickly. I only walk backwards when
someone is with me and only if the ground is level.
Sometimes the freeze happens when I have not taken my medication.
Within 15-to-30 minutes after I have taken my medication, the freeze
disappears and may not appear for hours. When the freeze happens,
and I am wearing my brace, the mental effort required to move the
leg doubles. There have been situations in which I had to take the
brace off before I could move. I put it back on once I get going.
There are three drawbacks to using a brace. One is you can’t
walk quickly. Two, it is difficult wearing it when walking up a hill
and steps. Three, even though it weighs less than two pounds, after
wearing it for six or hours it feels like a 10 pound weight. So I
take it off, and only if I think I will need it, will I put it back
on hours later.
My shoe size is 10. To wear the brace, I had to buy a size 11 shoe
with extra width. When my wrist and fingers were stiff, I had trouble
tying my shoes. Therefore, I buy dressy, black velour shoes
.
Kevin Linde helped me select the brace. It was delivered three days
after I ordered it on line. It is made of sturdy plastic and weighs
less than two pounds. Linde suggested that I wear the brace to PT.
I thought he was wrong, but he proved correct. I wear the brace during
my PT.
I use a cane on my walks. This helps with my balance and speed. Linde
taught me how to use the cane. I remember him saying, ‘Walk straight.
Walk strong. Walk slowly.” An essential tool on my walks is my
cell phone. In the event that my leg locks, I immediately call my
wife or 911. Fortunately, I have not had to call her and 911.
Physical Therapy
When I return from my walk, I do a series of leg exercises for about
10 minutes, and then I do a series of elbow, wrist and finger exercises
for 7 minutes. My daily exercise routine is about 60 minutes. On days
I choose to ride my exercise bike, my exercise runs nearly 90 minutes.
I see Kevin Linde twice weekly. Depending on how I feel, we do a solid
50 minutes of physical therapy. I spend 15 minutes riding an exercise
bike, 15 minutes on two different leg exercises using a machine, another
20 minutes on exercises dealing with mobility and balance. We spend
the last five minutes trying a new exercise or talking about my progress.
Kevin is a first rate physical therapist. He is always working with
me and never has another patient that competes for his attention while
I am there. He always asked me, “How are you feeling? How much
energy do you have?” He watches me carefully. If he believes
I can improve my routine. He tells me and then shows me how to do
something new. He never rushes me and has never lost his temper. He
encourages me to keep working on my PT even when I am not there. He
has made a positive difference in my life. When I leave him after
my PT, I feel 100% better physically and psychologically. He has become
a friend.
Assistive Technology
I have been a professional writer for 45 years. I use to type 45-to-50
words minute. Three years ago the stiffness in my left hand reduced
my typing speed to about 10 words per minute. In addition, the fingers
on both hands often stay on a key and produce multiple letters like
this tomorrrrrrrrrrrow. I was spending a lot of time correcting words.
To strengthen my wrist, I purchased a wrist supporter. I wear it sometimes
when I type or when I am eating, especially cutting meet. Thanks to
my PT....
continued
in ABILITY Magazine
(by John Williams
atechnews.com )
You can read
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Excerpts
from the Andrea
Bocelli Issue
Oct/Nov 2013:
Andrea Bocelli — Singing to the Top
John Williams — What Else You
Got?
China’s Mao Di — Clap Happy
John A. Gardner PhD — His
ViewPlus More
Shereen
Alnowais — Corporate Social Responsibility
Ballet — The Art of Sassoon
ask EARN — Regulations
Humor — Park at Your Own Risk
Articles
in the Andrea Bocelli Issue; Implementing the Final Rule; Ashley Fiolek
— Worth the Flight Delay; Humor — Park at Your Own Risk;
Geri Jewell — Breath Addiction; Long Haul Paul — Keeping
Cool; Shereen Alnowais — Corporate Social Responsibility; ComEd
— Providing Energy; OrCam — Point the Way!; John Williams
— What Else You Got?; Ballet — The Art of Sassoon; China’s
Mao Di — Clap Happy; Andrea Bocelli — Singing to the Top;
John A. Gardner PhD — His ViewPlus More; ask EARN — Regulations;
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