We reside in a
small town in southern Minnesota. My husband and I have been married
31 years. We have four grown children, ages 23 thru 28 years. We
have had a good life, good jobs and a nice community in which
families congregate and grow. Life hasn’t been that bad.
As a wife, I had
a suspicion that there was something awfully wrong with my husband.
Oh, he would go to work every day, put in his 10 to 12-hour days,
come home and we would do the family things. But something started
not to feel right. My husband started to come home totally wiped
out. He had dark circles around his eyes. He would have a bite to
eat after work and find the couch to nap and wake up to go to bed.
His handwriting was almost unreadable. He had a slight tremor in his
right hand and was starting to
drag his right foot. At times, one would think he had a few too many
drinks. There was mood changes and arguments. All these things were
not my husband.
I finally made
an appointment with the family doctor for a physical. They too
decided that there must be something not right. We connected with a
neurologist. After MRIS, testing, drug after drug therapy, we were
led to believe my husband had Parkinson’s disease. At 54 years of
age, we were dealing with Parkinson’s.
Two years into
the Parkinson’s diagnosis, all the drug therapy that was used on my
husband had seemed to fail. He wasn’t getting better but had
progressed much faster than a Parkinson’s patient would. He was now
using a cane, falling at a more rapid pace. He was no longer driving
his vehicle, his voice was becoming soft, his words were slurring.
The drugs that he had been taking made him in a zombie state. The
neurologist then decided to send him to a specialist at the
Parkinson’s Institute near Minneapolis. After an eight hour session,
we came home with the dreaded news. My husband had a rare disease
called progressive supranuclear palsy. Formally named,
Steele-Richardson-Olszewski Syndrome. In short, PSP.
PSP. Say
that over a few times. Not much is known of this disease. The chance
of having this disease is 5/100,000. It is much harder to find help.
There is no known cure. Most drug therapies do not help. Doctors
seem to play a guessing game on how to treat it. The life span is
about 5 to 7 years, and with good medical management and home care,
the patient could live 10 years.
My husband’s
neurologist had no answers for him. They said they had never treated
anyone with PSP and “what can we do for you?”; that was a question
we thought we would ask them. Needless to say, we went to a new
neurologist.
We were lucky
enough to get a fiery, five-foot tall, red head who was a fire
cracker! With a broken English-Rumanian accent, she told us she
didn’t know that much about this disease but would help us
understand it. I think we both educated the other. We were so glad
we invested in her, our faith of her abilities as a neurologist.
Her first
decision was to get rid of all medication that was being taken. It
was the theory of “if the meds aren’t working, why be on them?” we
started on our own course to get a handle on this disease. As of
this writing, my husband is off all Parkinson’s medication. At the
beginning, there was a marked improvement or should I say, a marked
change. The zombie state had left him. My husband was more alert.
The changes
didn’t last long as my husband was progressing into a different
stage of the disease. He no longer had a full night sleep. He would
get up many times for trips to the bathroom. His speech had become
very soft and very slurred. His falls were becoming more dangerous.
A wheelchair was now part of his life. We had many runs to the
emergancy room for stiches and x-rays to check for broken bones. He
is easily agitated and tired. He has outbursts of anger and has mood
changes. He has a starry-eyed look that is sometimes very
frightening.
To compensate for all these ailments, the drugs of choice are now an
anxiety pill for the mood changes and a sleeping aid. On a good day,
the drugs do their job.
As I sit here
and contemplate our lives, little did we know that this would be the
journey we would be taking. My husband started on this journey in
1998, being diagnosed with Parkinson’s. It is now the fall of 2003.
We have been walking the PSP path now for five years.
At this time, my
husband’s body is failing. He began to choke on water, so we
thickened all drinks. Soon, to stop choking, he decided not to
drink. Food was becoming a problem as was weight loss. The decision
to insert a peg tube was made. He now is fed a formula four times a
day to sustain his life. My husband has severe neck and shoulder
pain. He now has massage therapy to soften the muscles. The neck
muscles are stiffening and pulling to one side. He needs assistance
to walk, to get out of bed, to go to the bathroom, and to dress.
Because he doesn’t blink often, his eyes become dry and needs to
have drops applied many times a day. He has trouble seeing as the
brain will not let the eyes work properly. He is in stage four of
the dreaded disease, PSP.
As a caregiver
and a wife, I can only say it’s been a strange journey. Our day
begins where it left off the night before, with a feeding. I have
18-20 hour days. I have quit my job, as it was more cost-effective
to stay home and deal with this disease and help my husband. I am
caregiver, plumber, nurse, lawn care person, babysitter, shuttle
bus, walking aid, shower giver, house keeper, cook, bookkeeper and
one very stressed out person. It has been a hard and stressful trip.
I wish it upon no one, and I only have praise for those who do step
up and accept the challenge.
I am not blowing
my horn and I’m not singing my praise. There have been times when I
have wanted to walk away. There have been times I have screamed and
not been a very nice person. There have been many times that I have
cried “silent tears.” not a day goes by, that the tears do not flow
in some form or fashion.
At 59 years of
age, my husband says he feels 90. He still is my husband, but with a
twist. We call him our special person because he has a special
disease with special needs to be met.
Little did I
know our remaining years together would be talking about wills,
power of attorney’s, medical power of attorney’s, burial plans,
feeding tubes, doctor upon doctor appointments, ramps, lift chairs,
special beds, port-a-potties, special foods, wheelchairs, Medicare,
social security, home care, respite, hospicee and long-term care.
I started out on
this journey a very ignorant and blind person. But because of this
journey, I will walk away with compassion and dignity for life and
the higher power...and with “tears in
my coffee.”
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