Oct, 1997 our lives changed forever. My husband Vincent C. Fantuzzo, (nicknamed Jim) changed. at the age of 50.
Our lives were like most people's very busy, Jim was owner the of a
small independent tire company, which we had bought in 1994. Before that,
Jim had managed the Tire Company since 1975. I hadn't worked since the
birth of my first child, and in 1997 my boys were 19 and 17 years old.
We lived in a small city of 25,000 pop Ashland, Kentucky. Jim had always
coached baseball in the community, and I did various community projects.
We always supported each other, and met somewhere in the middle. We were
a busy family. Coaching baseball was very important to Jim because it
was something he knew and wanted to share. He was raised in a small "steel
town" in Pennsylvania, and upon graduation he was awarded a four-year
baseball scholarship to Marshall University in Huntington, W. Virginia.
College was something that would not have been possible from his family
if it were not for baseball and his high academics. Jim was an honor student
in high school and studied accounting and business in college. We were
married Sept, 1974 and he was working for the Goodyear Tire and Rubber
Company in Dayton, Ohio. He served in the Army Reserves in the 70's. Jim
graduated from college and graduate school.
We have been very active in the Ashland community since 1975. Running
a tire company, coaching spring. summer and fall teams. In 1994, he took
the only team ever from Ashland to the "Babe Ruth World Series. In the
spring of 1997 my husband had gone to Florida for a week, to watch my
oldest son play college baseball. He had been in Boca Roton, Miami, and
Ft. Lauderdale. He was out side day and evening games. When I had talked
to him on the phone, he said the weather was nice but the bugs were very
bad. We dismissed it. Jim continued coaching his baseball team in the
summer, my oldest helping him coach. He said, his father would not know
what to do at times.
Jim was running the store, and coaching the team as he has for so many
years. I started to notice a difference in Jim during fall ball season.
He became very irritable with me, and that was very unlike Jim. He was
sleeping a lot. He would fall asleep eating, and he became very hard to
get up in the morning. I asked him to go with me to a doctor because he
may have low blood sugar. I started noticing him taking ibuprofen a lot.
I was scared, because I was seeing a different Jim. My husband weighed
303 in Aug of 1997, and he never went to the doctor because he was always
afraid to go. Never had a family doctor. He had chronic sinusitis, which
was never cared for and this was from living in this valley of pollution
in the area of Ashland. Most people have to put up with allergies and
sinusitis living in this area.
When I would call Jim to get up in the morning, he was very difficult
to awake. I would have my son drive him to work because I had noticed
he was becoming very lethargic. A friend had asked Jim to go to the Marshall
U and Miami of Ohio football game, where they would stay with another
friend in Cincinnati. Jim had forgotten to tell me he was going. But he
was forgetting a lot. I had also noticed it was taking Jim a long time
to get ready for work. This man for years had always jumped up everyday
without an alarm and start his day, always in a good mood. I would find
him brushing his hair continually, not knowing when to stop. Jim had complained
of his legs hurting, and he was having a hard time getting into the van.
He took forever to get ready, and had to be cued to move on. What was
happening to my husband!
When he returned from the weekend, I told him we were going to the doctor
on Monday. He was very furious, and said "You go to the doctor". I went
to the store the next morning and started asking questions of his secretary.
She said, she had noticed a big difference, the employees started telling
me, they would find him very lethargic, and sleeping with his head hung
down. He would walk out into the shop, and forget why he was there. Jim's
secretary said, the light would bother his eyes, and he would bring things
to her to read for him. He had a mess in the office, he hadn't paid any
bills, and didn't know where to start. After hearing all of this, I was
in a panic, but knew I had to get him somehow to a doctor quick. I thought
that it was one of three things, a stroke, a heart attack (with his weight),
or a nervous breakdown. These things I could have understood.
He was taken to St. Mary's Hospital hospitals in Huntington, W. VA known
for they're heart unit. By this time, Jim was very very lethargic, confused,
and was trying to hold it together, but he was slipping. They gave him
an EEG, could see nothing, and said it could be TIA's. They released him,
and gave me a doctor to call to make an appointment with first thing on
Monday. Monday could not come soon enough.
That weekend was spent in a daze for both Jim and I. We watched the
World Series games on TV, and Jim did not know the teams or the players.
He was talking out of his head. My life had taken a change right then,
I knew that he was going to be different. First thing Monday morning,
I called the doctor, the hospital suggested. It was the wrong number for
the doctor, one who didn't handle TIA's or anything remote. I immediately
took my husband to the hospital again, my son JP told them that if they
released his father again, he would sue for negligence.
They admitted Jim, and good see progressive dementia. They kept Jim
in nine days, with no medication, just spinal taps, and MRI's. They ran
every test known to mankind. I asked for a psyche test, they ran that,
they said it was not psyche but organic but didn't know what. Jim had
a swollen head, high temps, paralysis on his right side, tremors, seizures,
respiratory failure, and semi coma. My husband was dying before my eyes.
His illness looked like a brain stem injury. He did not know me or the
boys, or the president or what year it was. They were letting Jim just
lay there, and this was not good. He went into ICU when he had his respiratory.
failure. The new neurologist came in studied the chart on my husband,
I watched. He said, "Jim had a virus that attacked his brain, he must
go to the Cleveland Clinic Foundation, possibly for him to have a brain
biopsy." I had to sign papers after papers. They had asked all the questions
and were running all the tests. We had been to Africa, Mexico Spain, but
these were 10 years ago, didn't matter things can lay dormant. They thought
it was CJD, or encephalitis.
They flew Jim by helicopter to Cleveland. He remained in ICU, for a
month, with more respiratory. failures, temps, seizures, then the blood
clot in his calf, pneumonia, headaches, light sensitive, and progressive
dementia. They treated the symptoms, the brain with steroids, he had bad
brain edema. Their diagnosis was EEE with early involvement of the basal
ganglia, and thalamus. Lesions throughout his brain. They wanted to put
Jim into a skilled nursing home, but there was not one that could take
him within this Tri-State area. Finally, the local hospital agreed to
take him after my sons begged them, because they knew family and friends
were crucial to his recovery and to help with his memory. Their father
of 50 was in diapers, could not walk, slept a lot, had to be fed, did
not know the children or I. He did not know anyone. He had brain damage
and there was still swelling. We put a legal pad in Jim's room, which
read, "Thank you for visiting Jim, we are sorry we missed your visit,
and Jim would not remember, so we ask that you sign your name, and we
will work on helping Jim remember." "Bless you for coming, Jeri, JP, and
Beau."
Some people would visit, most would not, only two players he had coached
throughout the years came. That hurt my boys tremendously. People would
call, I would ask for them to come and visit Jim, as visuals were very
important in brain injured from a virus. They would say," well if he doesn't
remember me, there isn't much sense in coming". I guess it would have
just been more comfortable to think that. For the boy's sake, I would
add names to the list so they would not see it blank. It was at this time
that I knew what a misunderstood and devastating disease this was going
to be. We did have a few friends that have stayed and helped us cope.
Jim was released from the hospital after three weeks, the future was
not looking bright, we lost the store, JP and I made the decision to let
it go, and I knew I had 6 months of health insurance after the store closed.
Jim went back into the hospital in Feb 1998, with Viral Meningitis another
brain infection on the meninges, compromised from the first brain infection
deep within the brain Eastern Equine Encephalitis. I had to set up Jim's
rehab, and stimulate his brain or "What he didn't use, he would Lose"
That was my goal. Today, Jim has come along way, but up short of recovery,
like the doctor said he would. He is very single tasked, has to be cued,
personality changed, compulsive behavior, higher cognitive deficits, memory
deficits, sleep disorders all the things that many encephalitis survivors
go through. They don't want others to know of their deficits because they
want a chance to be contributors to life again, and if people knew of
all the deficits from surviving encephalitis they would not give them
a chance to complete their dreams, but only shun them into isolation.
This I will stop
My husband was a tire company owner in 1997, that's when the mosquitoes
were at their worse, he also was outdoors coaching baseball, and he had
a suppressed immune system from chronic sinusitis, and he was 50 yrs.
of age, he just didn't have enough antibodies to fight encephalitis. So,
it is not important what part of his body received the bite, or where
in location he was when he was bitten. It is that he has survived, he
is a "survivor of encephalitis" and he is not alone. It is that his sons
mourn the father they knew this strong Italian take charge provider. Who
now finds his "safe haven" when there is to much stimuli doing laundry.
Folding the laundry and placing it neatly into the washer, then folding
and placing it very neatly into the dryer. It takes along time for re-covery,
and there is never a full recovery with encephalitis. You just have to
learn acceptance. Bad things do happen to Good people. Misunderstood,
and misdiagnosed, it is very lonely and isolating for "encephalitis survivors"
and that is the true devastating disease.
A family that sees the "Bigger Picture of Life"
Encephalitis Activists