This article profiles three individuals - Carl Landis, Mindy Lewis, and Jane Fisher - living with epilepsy in Johnstown, Pennsylvania. It describes their experiences with seizures, treatments, challenges, and perspectives on living with the condition. Key points include: Carl had his first seizure at age 55, Mindy's seizures started in childhood, and Jane was diagnosed at age 27. They each deal with different types and frequencies of seizures. The article also provides information on epilepsy in general, including causes, diagnosis, available treatments like medication and surgery, challenges patients face, and local resources for support.

1. 42 NOVEMBER 2012 • JOHNSTOWN MAGAZINE
Brain Storms
By Dianne Frye DeLisa • Photos by Jim Dobrick
Faces of Epilepsy

2. JOHNSTOWN MAGAZINE • NOVEMBER 2012 43
t’s not in Carl Landis’ nature to upstage anyone — certainly not the
current and former first ladies of the United States.But he might have
unwittingly done just that.It was September 11,2010,and Landis,a
volunteer Somerset firefighter,was among those presenting the colors at a 9/11
anniversary event where Michelle Obama and Laura Bush were the keynote
speakers.
“I remember going up front and saluting the flag,but I don’t remember coming back,”says Carl,of Berlin.“When we
got in our seats in the back,my buddy told me that I kept elbowing him,and it got harder and harder.And that my eyes
were sort of in a gaze.”After further evaluation at the scene,he was taken to Somerset Hospital.“Thankfully,it wasn’t
too much of a disruption,”he says with a laugh.
Mindy Lewis,39,of South Fork,on the other hand,doesn’t mind
being noticed,at least not when it can help raise awareness of epilepsy.
In fact,she dyed her hair purple,the color adopted for epilepsy market-
ing, just to start the conversation with people she sees.
“My seizures started in grade school,with convulsions and bad mi-
graines,” Mindy says.But she’s also experienced many other kinds of
seizures,including ones with hallucinations.“For example,my school bus
would have reached the bus stop,but I still felt like the bus was going
100 miles per hour,”she says.
Jane Fisher,56,of Johnstown,worked as a nurse but
said that until you experience something like epilepsy,you
really don’t know what it’s like.
“One time I was at a store and handing a cashier money,
and the next thing I knew,she is saying‘Are you okay?’ and
my hand was still stuck in hers.I was concerned,”Jane says.
The differences in Carl’s,Mindy’s and Jane’s stories are
reflective of epilepsy patients in general — no two patients
or symptoms are identical.Carl,who is 55 years old,had his
first seizures just a few years ago,Mindy’s symptoms started when she was a child,and Jane had her first big seizure
when she was 27.Epilepsy can come at any age to people of all races,genders and backgrounds.
What connects them is their experience with a disorder that they all wish more people understood
better.
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3. What is epilepsy?
Medically speaking, epilepsy is a physical condition involving
the electrical balance in the brain. Seizures occur when there are
excess electrical discharges in the brain. Diagnosis of epilepsy is
made only after someone has more than one seizure. And you
might be surprised at what is meant by the word “seizure.”
Many people think of people think of uncontrolled movements
or shaking, and that certainly is a kind of seizure, but there are
others. (See sidebar on page 46.)
While Carl’s most memorable seizure might be the one in
Shanksville, he’s had others. One time he was on his way to a
store in Somerset, but he ended up in Stoystown, and doesn’t
know how he got there. He’s been to the hospital four times for
seizures but doesn’t remember any of the trips.
In addition to headaches and hallucinations, Mindy has had a
variety of epileptic seizures, including those that involve nausea,
eye twitching and staring. Over the next several years, Jane had
what she calls “odd spells” and eventually had a grand mal
seizure that led to her diagnosis.
When epilepsy is suspected, the doctor will take a complete
medical history and will probably order an EEG (electroen-
cephalograph), which records brain waves picked up by tiny
wires pasted on the scalp, as well as a CT or MRI scan. Unfor-
tunately, in more than 70 percent of all epilepsy cases, no cause
can be found. That can make determining the right treatment
tricky.
So you have epilepsy. Now what?
Seizure-preventing drugs are by far the most common treat-
ment, but getting the correct type and of amount of medication
is a real puzzle because everyone’s seizures are different, and
everyone reacts differently to the medicine. “They say if I don’t
have a seizure again by November, I probably won’t be a candi-
date for brain surgery,” Carl says, “but I kind of hope I do have
the surgery because a high percentage of people see great im-
provement afterward. And I’m already taking the maximum
amount of medicine you can take.”
Mindy is also taking medicine, but she’s had various other treat-
ments as well, including vagus nerve stimulation (VNS), which
directs short bursts of electrical energy into the brain through a
44 NOVEMBER 2012 • JOHNSTOWN MAGAZINE
Carl Landis

4. large nerve in the neck. And in May of
2011, Dr. Alfred Bowles performed brain
surgery on Mindy at Memorial Medical
Center in Johnstown, but it hasn’t
stopped her seizure activity completely.
She is also treated at the John P. Murtha
Neuroscience and Pain Institute by
Dr.Frank Gilliam, an epilepsy specialist.
“Dr. Bowles and Dr. Gilliam are angels
sent from heaven,” she says. “I used to
have 80 to 90 seizures per month, but
now it’s down to about three to six a
month.” She’s going to have more tests
soon to determine her next steps.
Jane’s seizures are pretty much under
control with medicine; she had her last
seizure about a year ago and has no plans
to try any different treatments.
Since there is not a cure for epilepsy, the
relationship between doctor and patient
is lifelong. “Patients need to be moni-
tored with periodic EEGs as well as
checkups including bloodwork to make
sure they have the right amount of medi-
cine in their system,” says Dr. Jan Savit, a
Johnstown neurologist who sees between
150 and 200 seizure patients.
Living with epilepsy
Aside from the physical effects of
epilepsy, what’s it really like to live with
this condition?
“Over the years, I have listened to many
epilepsy patients talk about their frustra-
tions with their disease,” said Frieda Peters,
lead EEG technician at Memorial Medical
Center. “They deal with the public’s fear of
people with epilepsy, not being able to drive
a car, the fatigue associated with anti-epilep-
tic medications and concern of experienc-
ing an ‘event’ in a public place.”
For Carl, the hardest part of having
epilepsy is not being able to help out with
his granddaughters, who are 5- and 2-
years old. “I can’t take the grandkids for
ice cream or help out with their care be-
cause I can’t drive or be alone with them
JOHNSTOWN MAGAZINE • NOVEMBER 2012 45
Local epilepsy resources
John P. Murtha Neuroscience and Pain Institute
1450 ScalpAvenue,Johnstown,PA 15904
(814) 534-3100
www.conemaugh.org
Epilepsy FoundationWestern/Central Pennsylvania Johnstown Office
1001 Broad Street,Suite 240,Johnstown,PA 15906
(814) 262-7494
www.efwp.org
Jane Fisher
Mindy Lewis

5. in case I’d have a seizure. It makes me feel
bad,” he says.
While Mindy has an amazingly positive
outlook, she admits that she’s not sure she
wants to go through with brain surgery
again if the doctors recommend it — a
very difficult choice to make, to be sure.
Jane had real concerns about how her
epilepsy diagnosis would change her life.
“In the beginning it was shocking,” she
says. “Was I going to lose my job? Would
they take my kids away from me? But as
the years progress, I manage. I’m still
afraid I’ll embarrass myself or my family.”
Staying on the sunny side
Though they admit the challenges
epilepsy brings, Carl, Mindy and Jane are
all an inspiration for their ability to look on
the bright side. While he can’t work out-
side the home anymore, Carl enjoys wood-
working in his garage to keep his mind off
of his condition. “And I am really thankful
for family and friends who are supportive,”
says Carl. “Without their support, it would
be three times worse.”
Mindy stays positive in spite of major ob-
stacles in her path. “It seems like if some-
thing could go wrong, it did,” says Mary
Grattan-Neely, regional coordinator for the
Epilepsy Foundation Western/Central
Pennsylvania. “But she’s an inspiration. She
picks herself up, dusts herself off and starts
all over again.”
After complications that included a
stroke, blocked arteries in her legs and a
lifetime of coping with various types of
seizures, at each step Mindy simply asks,
“Okay, what are we going to do to help
me?” When she had to wear a helmet after
surgery, she decorated it with Steelers stick-
ers. If you’re curious about her scars from
her VNS, she’ll show you. When she had
to have her head shaved for surgery, she
wanted to donate her hair to Locks of
Love. About the months she’s had to
spend in hospitals and rehab facilities? Her
caregivers and fellow patients have become
friends.
Jane is philosophical about living her life
to the fullest. “We can’t live on ‘what if?’
What if you don’t have seizure? You will
have missed out on something special if
you spend all your time worrying.”
46 NOVEMBER 2012 • JOHNSTOWN MAGAZINE
CentralizedTonic-Clonic
(Grand Mal)
Sudden cry, fall, rigidity, fol-
lowed by muscle jerks, shallow
breathing or temporarily sus-
pended breathing, bluish skin,
and possible loss of bladder or
bowel control. Usually lasts a
couple of minutes. Normal
breathing then starts again.
Confusion and/or fatigue, fol-
lowed by return of full con-
sciousness
Absence (Petit Mal)
A blank stare,beginning and ending abruptly,lasting only a few seconds,most common
in children. May be accompanied by rapid blinking and some chewing movements of the
mouth.Child or adult is unaware of what’s going on during the seizure,but quickly returns
to full awareness once it has stopped.
Simple Partial
Jerking may begin in one area of the body,arm,leg,or face.Person stays awake.Jerking
may proceed from one area of the body to another and sometimes spreads to become a
convulsiveseizure.Partialsensoryseizuresmaynotbeobvioustoanother.Personexperiences
a distorted environment. May feel unexplained fear, sadness, anger or joy. May have nau-
sea, sense of odd smells and have a“funny”feeling in the stomach.
Complex Partial (Psychomotor orTemporal Lobe)
Usually starts with blank stare, followed by chewing movements and random activity.
Person appears unaware of surroundings and seems dazed.Unresponsive.Actions clumsy,
not directed. May pick at clothing, pick up objects, try to take clothes off. May run, appear
afraid.May struggle or flail at restraint.Once pattern established,same set of actions usu-
ally occur with each seizure. Lasts a few minutes, but post-seizure confusion can last sub-
stantially longer.No memory of seizure.
Atonic Seizures (Drop Seizures)
An adult or child suddenly collapses and falls.After 10 to 60 seconds, he/she recovers,
regains consciousness and can stand and walk again.
Myoclonic Seizures
Sudden,brief,massivemusclejerksthatmayinvolvethewholebodyorpartsofthebody.
May cause person to spill what they were holding or fall off a chair.
Infantile Spasms
Clusters of quick,sudden movement in a child aged 3-24 months.If a child is sitting up,
the head falls forward and the arms flex forward. If lying down, the knees draw up while
arms and head flex forward.The baby appears to reach for support.
Types of
Seizures
Mary Grattan-Neely
Information provided by
the Epilepsy Foundation

6. Aside from their positive outlooks,
Carl, Mindy and Jane are united in their
desire for more epilepsy awareness. “Peo-
ple pass judgment on things they don’t
know,” Mindy says. “Google it. It could
be you, your best friend or your child that
will get it.”
Jane adds, “Someone with epilepsy is
no different than anyone else with a
chronic condition like diabetes, arthritis
or anything else. There’s nothing to
fear.”
From experience, Carl offers words of
wisdom for others in a similar situation to
his. “Listen to your doctor. Go see a doc-
tor if you think you’re having seizures,”
he advises.
Steady steps
toward the future
A local physician echos Carl’s advice, say-
ing medical advancements also give patients
reason for hope. “Epilepsy is far ahead
when it comes to developing new medi-
cines,” says Dr. Savit. “Epilepsy medicines
now have better efficacy and fewer side ef-
fects. There’s every reason to expect a very
good outlook. I’ve only sent a handful of
my patients to Pittsburgh for more inten-
sive care, and even then, they can come
back and get all the treatment they need in
Johnstown.”
A variety of services are available locally
to help epilepsy patients and their families.
Between the Epilepsy Foundation West-
ern/Central Pennsylvania and the Cone-
maugh Health System, patients have access
to education, support groups, state-of-the-
art diagnosis and treatment and much
more.
EEG technician Frieda says while there is
no cure for epilepsy, she loves it when pa-
tients come back to tell her how their lives
have changed for the better after treatment.
“It’s great to hear how they are able to get
on with their lives,” she says.
Mary gets emotional when talking about
all the people with epilepsy she has gotten
to know, saying, “People with epilepsy can
be strong, they can be role models, excel-
lent parents, hold down a job. It’s a privi-
lege to work for such an organization where
I can help and get to know individuals like
Carl, Mindy and Jane.” JM
JOHNSTOWN MAGAZINE • NOVEMBER 2012 47
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