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OFFICE OF HANDICAPPED CONCERNS
WILL'S CORNER, OKLAHOMA
(Serving the Disability Community of Oklahoma)
Volume 6, Issue 1
January, 2005
Betsy Replogle, an Oklahoma Advocate
Betsy Replogle on illness
My long relationship with chronic illness began twenty years ago
on December 21, 1984. It wasn’t that I had no idea what Dr.
Reichlin was going to say. I had read a lot about it, and I knew
it was a killer. I knew what the books said. My skin would be
stretched tight like a wrapping of cellophane around my body.
Inside I felt I had been physically beaten, rolled in broken
glass, and set on fire. Renal failure was always a threat. My
body was in civil war. But when he told me, it was still a
shock. It was like I really wasn’t there and this wasn’t
happening to me. But it was, and I wasn’t going to wake up to
another reality. I had a crippling disease which was almost
always fatal in 1984. I really thought I was going to die but
not before a long period of agony. If it were only dying, I
think I could have stood it, but the pain in every nerve of my
body was a torment that never left. Scleroderma is a rare,
crippling disease in which the human body turns on itself in
savage attack.
It is in a family of autoimmune diseases which you are much more
familiar with like rheumatoid arthritis and lupus. My body
produces too much collagen which causes my skin to stretch tight
and harden. That’s what scleroderma literally means—hard skin.
If that were all that it affected, I think I could live with it,
but it also affects internal organs like the kidneys, heart, and
lungs. Connective tissue like ligaments and tendons tighten to
freeze the body in grotesque images like a polar blizzard
captures falling waters in motion. This hardening of my body
inflamed every nerve in screaming revolt, and I was quickly
reduced to a deathbed of horror.
Dr. Reichlin is the Vice President for Research at the Oklahoma
Medical Research Foundation. He told me about scleroderma, but
he also told me not to let the terrible things I had been
reading about this thing frighten me. The current literature is
already outdated. We are learning new things every day and just
because the news was not good today did not mean that it would
always be that way. I grasped at this small hope and nurtured it
even as I watched this thing progress more rapidly than even the
books described. I really thought I was going to die even as I
concentrated my energy on that small hope that Dr. Reichlin
offered. Maybe I could live long enough until medical research
could discover some way to control this horrible disease.
I remember having a dream, and this dream is still real to me
today. I was on a mountain in a freezing rain at night. Dr.
Reichlin was driving the bus down those dark, twisting roads
covered with ice. I was in the back of the bus in my hospital
bed, and I knew the danger of the bus sliding off into the void.
I knew the danger but somehow I accepted my own helplessness. I
trusted Dr. Reichlin to use all his driving skills to bring me
safely down that mountainside. Whatever would happen would
happen, and it was then that I relaxed for the first time in
weeks. I didn’t have to control anymore. I accepted what was
happening to me however it turned out. I rested.
I survived the renal failure on a new drug which helped to break
down the extra collagen my body was producing. Trust is a
beautiful thing that I don’t think I would have ever known if I
hadn’t faced this crisis. People feel they have to be in control
because they don’t know how to trust. I trusted Dr. Reichlin to
do his best and however the outcome, it would be for my best.
The world was okay. My mind was at rest even as the disease
raged on.
Scleroderma produced astonishing symptoms which my twelve plus
medications only superficially treated. My small blood vessels
constricted to cut off the blood to my hands first causing them
to turn white, then dark blue, then red again. Contractures
appeared on my fingers like cat claws, and I developed ulcers in
my mouth which was always dry. My esophagus was scarred with
reflux which had the potency of battery acid. My teeth began to
decay from the reflux, but I knew I was going to live again. I
had a mission from God.
Betsy Replogle on Advocacy
In 1995 I started going to Washington, D.C. to ask Congress for
more funding on rheumatology. My family said no, but I went on
anyway. I went to Ernest Istook and other members of the
Oklahoma delegation asking for money for research. Sometimes I
went to key congressional leaders. I told them what I wanted and
why. I had no money to offer. I only had my experience and a
passion to make a difference. I wanted to be a patient
advocate—not a paid lobbyist. Patient advocates have gotten
federal funding for medical research doubled in five years. The
national arthritis action plan has been funded to the tune of
$10 million. People working together can make a difference. Then
something happened to me which turned everything upside down.
Health and Human Services Secretary Tommy Thompson appointed me
in 2001 to serve on the Advisory Council of the National
Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS).
I found myself meeting three times annually with a group of
doctors and medical researchers of world renown who have final
approval on a half billion dollars worth of federal medical
research monies. I am humbled by this appointment, and I still
ask why me. The only answer I come up with is that I know from a
personal level what disease can do. I think that is the part I
can add to the equation. I am not a doctor even though I am on a
first name basis with people who are highly respected in their
fields. I accept my appointment even like I accepted the
devastation that scleroderma waged on my body. I accept the good
and the bad.
Some day we may be able to cure scleroderma and other autoimmune
diseases. We continue to learn more about this devastating
condition. Oklahoma Choctaw Indians have the highest incidence
of scleroderma in the world with a rate forty times the average.
We don’t know why, but we may learn as developments in genetics
and new techniques for research and biotechnology appear. Our
knowledge is exploding. It is exciting to see it all first hand,
and I have a part to play in all of this. Being named on the
Advisory Committee is as much a mystery to me as those early
days in 1984 as I was hurled into a dance of death with disease
and the disability it spawns. I accept today. I accept whatever
it brings. Tomorrow is another day, and I have no assurance what
it may bring. I have learned to trust that good will triumph in
the end.
Betsy Replogle is a patient advocate, and she was born and
raised in Oklahoma. In addition to her efforts in Washington,
D.C., she serves on the Oklahoma Arthritis Network organized
through the State Department of Health.
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OHC web site:
www.ohc.state.ok.us
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HAPPY HOLIDAYS, GORE OKLAHOMA
On Saturday, December 11 Steve Stokes and I drove over to
eastern Oklahoma to the proud municipality of Gore. Gore,
Oklahoma is in an enviable area of the recreational, eastern
part of the state near lakes and forests popular with hunters,
fishermen, and camping enthusiasts. Lake Tenkiller’s southern
reaches are a bare six miles to the north surrounded with no
less than three state parks: Tenkiller, Cherokee Landing, and
Greenleaf State Park which we mentioned in Will’s Corner summer
edition as having handicapped-accessible cabins. To the
southeast of Gore lies the impressive Robert S. Kerr Lake which
was created by damming a portion of the Arkansas River near the
Arkansas line.
Gore boasts a population of 850 people swelled by tourists in
season and permanent retirees who have left the razzle dazzle of
the cities to embrace the idyllic lifestyle of a bygone age.
Small-town Oklahoma is one, big family built on solid American
values where everybody knows you and probably knows your
children and grandchildren as well. And lots of those children
and grandchildren were out on this beautiful early Saturday
afternoon to celebrate Gore’s annual Christmas Parade right down
Main Sreet U.S.A.
Steve and I were right in the middle of that parade nestled
among several cars of state dignitaries such as State Senator
Richard Lerblance of Senate District 7 and Representative Ray
Miller of House District 15 whose districts include Gore. The
State Department of Commerce was represented by a smiling Corey
Herndon who threw wrapped candy to eager children scurrying on
the sidelines to get all the goodies. And then there were real
clowns on stilts with funny faces laughing with the excited
children and proud parents lining the streets What would a
parade be without a marching band, and music there was provided
courtesy of local schools. And don’t forget the football queen
on that nicely decorated float over there. City officials said
that this was the biggest Christmas Parade Gore had ever hosted.
But as much fun as the parade turned out to be, the best was yet
to come. Gore had a little town hall meeting right after the
parade was over. Mayor Larry Pack was there as well as Vickie
Tincher who is the Deputy City Clerk and Keats Tyler who is the
City Administrator. Vickie tells Office of Handicapped Concerns
Director Steve Stokes that Gore wants to serve all its citizens
regardless of ability. Let’s look into that town hall meeting a
little closer to find out what they’re planning to make this
particular small Oklahoma town more accessible.
Vickie Tinsher
“Steve, we’re so happy you could come to Gore to join in our
celebration. Our community wants to be more accessible to people
with disabilities, and we want to know how.”
Steve Stokes
“The parade was great. Thank you for inviting me, and thank you
for being interested in making your city a friendlier place to
people with disabilities. I am sure Gore, Oklahoma is no
different from any other Oklahoma town with fully one in five
citizens having some type of disability. But I know you also
serve a lot of tourists and retirees in the area who may have
disabilities. If your town is accessible, these people with
disabilities will want to come here and spend their money.
Accessibility is good for business.”
Vickie
“Steve, we’re just looking at things we can do now with not much
of a budget set aside. We want to take things one step at a
time.”
Steve
“You might start out looking right around this room. This is a
public building and as such under Title II of the Americans with
Disabilities Act (ADA), it should be accessible to the
citizenry. Lever door handles are easier to grasp for me because
I do not have full use of my hands. Since I’m in a chair, it is
easier for me to use the paper towel dispenser in your public
bathrooms if that towel dispenser is at a little lower level.
These are things that don’t cost much money, but they can make
things so much easier.”
Keats Tyler, City Administrator
“We want to lay some sidewalks with curb cuts to help people get
around town. I think the Department of Commerce may have some
grants to do something like that.”
Corey Herndon of the Department of Commerce
“We have grants which are not specifically for the purpose of
making something ADA accessible although a city could use the
money for that purpose if they chose to.”
Vickie Tinsher
The City of Gore currently has a 1 cent sales tax which is due
to end. We are having an election later this month to allow
voters to decide whether to extend this sales tax another year.
If the measure passes, we hope to build a new senior citizens
center from the ground up which would be totally accessible to
people with disabilities.”
Mayor Larry Pack
“We are also building a sports complex here in Gore which we
hope to make accessible to people with disabilities.”
Jeff Andrews, architect with ADA expertise
“I have recommended we survey all city buildings to see what we
will need to do to get public buildings up to code. Get a
committee of citizens to prioritize these things so we can have
a place to begin. This needs to be a community effort with
everyone pulling together.”
Steve Stokes
“It sounds to me like Gore is taking control of their community.
Community leadership and community commitment will make a
difference for people with disabilities. I can see that you are
really serious about doing something. Remember that what you do
today to make your city more accessible to people with
disabilities may help you or a member of your family tomorrow.
All of us are only temporarily able bodied.”
If you have a question about the accessibility guidelines of the
Americans with Disabilities Act of 1990, call the Office of
Handicapped Concerns’ toll free number at 1-800-522-8224. We’ll
be glad to offer you technical assistance with specific
information. If you are a person with disabilities anywhere in
Oklahoma, you may advocate for more accessibility in your
community. Contact your city council representative with your
concerns. Explore ways your community may finance projects which
will help its citizens. In the summer edition of this
newsletter, we discussed what was happening in Stillwater. Now
we feature the community of Gore. We want to visit your town as
well to tell the good news of a barrier-free Oklahoma which
welcomes all its citizens to participate fully in this dream we
call America.
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State of Oklahoma
www.youroklahoma.com
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DEEP BRAIN STIMULATION
(A Treatment for Essential Tremors,
Parkinson’s, Dystonia,
and to be approved for Epilepsy)
Dr. Paul Francel:
Most of my patients choose to be awake. It is the patient’s
choice. We always anesthetize the skull, but the brain is
actually an amazing thing. You feel nothing during surgery. We
put five small screws the size of the screws in your eye glasses
into the skull a couple days before the actual surgery. During
the surgery, we make a hole the size of a nickel and insert
small wires with electrodes on the end into the Anterior Nuclear
Group of the thalamus. These electrodes are targeted through
computer imaging with 3D high resolution which permits
hair-splitting accuracy and is a minimally-invasive procedure
which takes only about two hours. The electrodes are then
activated a couple months later and the results compared against
subjects who are not activated to determine if this procedure
will actually reduce or eliminate seizures.
Some patients have uncontrolled seizures which are not
controlled with medications. We are involved in a national study
here at the O.U. Medical Center to determine if this surgery and
the stimulation of the brain through the electrodes can actually
prevent seizures from occurring. We are one of the twelve
centers in the United States selected to do trials of this
procedure. The F.D.A. (Federal Drug Agency) and Medtronics which
developed the technology which we insert into the brain are
paying for these trials. Candidates for the trial go through our
neurologist, Dr. Oomen, who then refers patients to me. For the
patients who are selected, all costs are waived. The patient
must agree to the procedure and continue with all follow ups for
a couple years afterwards.
I think Deep Brain Stimulation has a good chance to be approved
as a viable treatment for uncontrolled seizures in the United
States. We are half way through the trial now and it will take
some time to analyze the data when the trial is over, but the
results are encouraging. Deep Brain Stimulation is already an
approved procedure for Essential Tremors, Parkinson’s disease,
and Dystonia. The procedure is very similar in these conditions
except that we treat a different part of the brain. The idea is
to stimulate an area of the brain to prevent negative symptoms
of the disease, and this has actually been quite successful.
In 1997, Channel 4 News of Oklahoma City did a piece on a 63
year old man whose hands shook uncontrollably making it
impossible for him to even hold a coffee cup. During filming of
the actual surgery, when we inserted the electrodes into the
right part of his brain, the tremors stopped immediately. He
tells the amazing story that he feels he got his life back, and
at the end of the story he is teeing off on the golf course. It
was quite dramatic.
I think this procedure has the potential to affect people
suffering from uncontrolled seizures as well. Keep in mind,
however, that we are only involved in trials now. The procedure
is not yet FDA approved for the treatment of epilepsy. We have
been chosen as one of the twelve centers in the United States to
test Deep Brain Stimulation on subjects suffering from
uncontrolled seizures. This is quite an honor.
Research on the brain is escalating. I can foresee a time when
we may treat clinical depression, obesity, and even
schizophrenia. In obesity we know that something is wrong in the
metabolic regulators of the hypothalamus. We are seeing that all
these conditions have a biological basis. Just like the man
whose tremors stopped, we will be able to treat conditions we
have never dreamed before as a result of our research into the
mysteries of the human brain.
Dr. Paul Franzel is a Harvard University undergraduate. From
there he went on to the University of Chicago where he received
his MD and PhD. He did his residency at the University of
Virginia which is a premier center for the training of
neurosurgeons. Dr. Franzel resides with his wife and four
children in the Oklahoma City area.
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More than 10 percent of Oklahomans have a serious mental
illness, the highest rate in the nation, according to a survey
released today.
The Daily Oklahoman
April 13, 2004
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Emergency Preparedness
Are you or a member of your family a person with disabilities?
Do you or this other member of your family attend public
meetings in your town? How would you evacuate that public
meeting hall if there was an emergency? Lots of us have not
really thought about that, but some people in Oklahoma City have
been thinking about just this subject and have been thinking
about it in reference to the new Ford Center in the downtown
area which can accommodate up to 20,000 people at one time.
At full capacity of 20,000 people, how many people with
disabilities might be in the audience? Oklahoma has about one in
five citizens with some form of mental or physical disability
which would equate to 4000 people in that arena having some form
of disability. We all know that many of those 4000 people have
only a mild disability, but what if there were as many as 100
people in the audience who had a severe disability. Some of
those people might use a wheelchair to get around. Some of them
might be blind or deaf or have any number of other disabling
conditions. In the event of a fire, what would happen to these
people in the potential chaos which could occur?
It’s better to think about this now than to wait until the
emergency occurs. Planning is exactly what the City of Oklahoma
City and the management of the Ford Center did on the evening of
November 15, 2004. They assembled 300 plus civic-minded
volunteers including local boy scouts into the Ford Center to
discuss their evacuation plan and to do a trial run on how
people with disabilities could evacuate the Ford Center in the
event of an emergency. All the volunteers were assembled into
one section of the Ford Center and were given tags identifying
them as having one type of disability. Some people actually got
into wheelchairs to simulate evacuation of a person with
mobility impairments.
Fire Chief Long of Oklahoma City addressed the volunteers
together with paid staff of the Ford Center on what to do in the
event of an emergency. He hit the highlights of a 26-page
evacuation plan prepared to instruct Ford Center employees,
emergency city employees and the general public on what to do in
case of an emergency during a major public event. The evacuation
plan included various kinds of emergencies as well as details on
working with people with various kinds of disabilities. What
should a fireman or Ford Center employee do in case of a fire in
the building? What should a security guard do in case of a bomb
threat which was deemed likely? How should staff escort an
individual who is blind in the proper way? How does an employee
safely escort an individual in a wheelchair down a flight of
stairs? These are things that are worthy of being addressed
before an emergency to avoid unnecessary human suffering.
A short film was shown the audience which followed very closely
the text of the evacuation plan before initiating a real fire
drill using emergency equipment within the center. Staff
escorted individuals in wheelchairs to the nearest outer
stairwell. Emergency alarms rang across the building and were
accompanied by flashing lights to alert individuals who were
deaf. People exited the building via the nearest outer stairwell
which was reportedly built to withstand four hours of fire
before becoming unsafe. Exiting public and staff were encouraged
that in the event of a real fire, some smoke could escape into
the stairwell exits and people should keep as low as possible
below the level of the smoke. The group of volunteers, staff,
and city emergency employees safely filed out of the building at
street level within a few minutes.
Fire Chief Long talked about a shelter-in-place type of
emergency. He stated that in the event of a large, hazardous
chemical spill near the Ford Center that citizens should remain
in the building until the danger outside was resolved rather
than exit into a dangerous situation. In the event of a tornado
in the vicinity, people would be led to safe rooms off the lower
level of the center until the threat was over passed.
People with different types of disability require different
assistance. A person who is in a wheelchair could use two
assistants in going down stairs safely and quickly. A person
with a guide dog may prefer to have the dog follow the assistant
rather than directly lead the individual. People who have a
cognitive impairment need simple, direct instructions on what is
happening and the best way to remain safe. Safety depends on
people with disabilities making known their presence and needs
and staff being properly instructed on the needs of people with
disabilities.
The Ford Center in Oklahoma City is a prime example where large
numbers of the public, many with disabilities, may be assembled
at one time. You may or may not have a Ford Center in your
community, but I’ll bet you have a basketball or football game.
Large numbers of people are gathered in local churches and
hospitals and schools. Do emergency personnel know how to
evacuate people with disabilities under various kinds of
emergency? Are people with disabilities aware of emergency
exits? Is your community prepared for all possibilities?
Preparation can make the difference between life and death. Our
Director at the Office of Handicapped Concerns says, “Safety
codes are literally written in blood.” Emergency preparedness
saves lives.
We want to thank Police Captain Pat Byrne of the Oklahoma City
Police Department for his help in arranging this emergency fire
drill at the Ford Center in Oklahoma City. Thanks to Fire Chief
Long and Tom Anderson also representing the City of Oklahoma
City. Thanks to all the SMG staff at the Ford Center including
Gary Desjardins, the General Manager and Robin Miller who is the
Guest Relations Manager as well as Gloria Pollard who is the
Human Resources Manager. Thanks also to the SMG general staff at
the Ford Center and civic-minded public in Oklahoma City who
played a vital part in preparing for an emergency. And thanks to
you in small towns and large cities across Oklahoma who will
help prepare your community to safely respond to an emergency in
a public assembly of people.
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Read All About It!
The Office of Handicapped Concerns has published its new book on
housing for people with disabilities. Download it from the
website www.ohc.state.ok.us or call 800-522-8224 to reserve your
copy.
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Working Smart
Being successful is not about how hard you work—it is about how
smart you work. Michael LeBoef said, “Devoting a little of
yourself to everything means committing a great deal of yourself
to nothing.” There is a big difference between activity and
accomplishment. Activity is being busy. However, as Henry David
Thoreau once said, “It’s not enough to be busy; so are the ants.
The question is : What are you busy about?”
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CALENDAR OF EVENTS
March 8, 2005 Oasis one-day conference on social services in
Vinita, Oklahoma. This is part of a series of grassroots one day
conferences on the availability of social services in our state.
Contact Sally Selvedge at 800-426-2747 for more information.
March 9-10, 2005 Oklahoma Association of Supported Employment
Conference in Tulsa at the Southern Hills Marriott Hotel. For
more information, call 405-325-0448.
April 4-5, 2005 Governor’s Conference on Developmental
Disabilities in Tulsa’s Southern Hills Marriott Hotel. For more
information, contact Sheree Powell at 405-521-6267.
If you have an event coming up relating to disability, let us
know at 800-522-8224 and we’ll help you publicize.
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