|
|
The Apnea Patient's News, Education & Awareness Network |
|
|
The Apnea Patient's News, Education & Awareness Network |
This page last updated 05/27/06 03:25:56 AM
The Great American Sleepwalk -- May 29, 1996
The Great American Sleepwalk was a rally held in Washington, D.C. on the Wednesday morning of the 1996 annual meeting of the Associated Professional Sleep Societies. The rally was held on Capitol Hill, in the Caucaus Room of the Russell Senate Office Building, in the heart of our congressional delegations. Sponsored by the Governmental Affairs Committee of the American Sleep Disorders Association in cooperation with several other sleep groups, the rally brought together about a thousand sleep professionals and patients. We united to hear an update on current progress in sleep disorders research; to see the presentation of the ASDA's Mark Hatfield public policy award; and to hear from 3 patients with sleep disorders (Restless Leg Syndrome, Narcolepsy, and Sleep Apnea). We also received instructions on how to talk to our legislators and lobby for more funding for sleep disorders research. We then left the rally and grouped together by state and/or congressional district to visit our elected Senators and Congressmen and their aides for health legislation, discussing with them the realities of life with a sleep disorder.
The patient speaker for Sleep Apnea was Dave Hargett, who was actively involved in the planning and naming of this event. Limited to only five minutes, Dave had to trim his planned remarks. Below you will find the full text of his remarks as delivered at the rally. You will also find a draft of the additional remarks he had planned to make. There is also a summary of what occurred at the rally.
The following text is taken from the Newsletter of the Elk Grove Village (Illinois) A.W.A.K.E. group. It reports on what happened during the Great American Sleepwalk:
Our speaker for the evening was our own sleep activist, Dave
Hargett, who reported back on his venture to Washington DC in
support of the Great American Sleepwalk, the APSS meetings, and
the national A.W.A.K.E. Coordinators meeting.
"I SPENT ALL THIS MONEY TO GO TO WASHINGTON AND ALL I GOT
WAS THIS LOUSY T-SHIRT!" Dave joked, as he showed off his
Great American Sleepwalk T-shirt, which all participants in the
walk received. With only about a 1,000 shirts available, these
are real collector's items. Dr. Frankie Roman, one of the
organizers, had the key Sleepwalk participants sign his shirt
with a marker, creating a really exclusive souvenir for himself,
but Dave preferred to wear his.
On a more serious note, Dave explained the origin of the
Sleepwalk. During the Memorial Day week, the Associated
Professional Sleep Societies were having their annual meeting in
Washington, DC. ('95 was in Nashville; '97 is in San Francisco).
The APSS includes the American Sleep Disorders Association, the
Sleep Research Society, the Association of Polysomnography
Technologists, and the Sleep Disorders Dental Society. So a lot
of sleep professionals were scheduled to be in town. With this
being an election year and meeting in DC, the time was ripe for
some sort of lobbying effort.
Dr. William Dement and Dr. Frankie Roman, working as WakeUp
America, and cooperating with the Governmental Affairs Committee
of the ASDA, co-chaired by Dr. Barbara Phillips and Dr. James
Walsh, planned the rally as a way to get sleep professionals,
healthcare professionals and patients together to educate our
legislators about the impact of sleep disorders and the need for
increased funding for sleep disorders research, and public
awareness and medical education campaigns. Planning began in
1995, and as the date got closer, Dave got involved with the
planning and even helped name the event, coming up with "The
Great Sleep Walk", which evolved into the final "Great
American Sleepwalk" or GAS for short. When plans were being
finalized, Dave was asked to represent all the folks in America
who have sleep apnea (both those diagnosed and those undiagnosed)
as one of the three patient speakers.
Arriving on Tuesday afternoon, May 28th, Dave checked in and
began working with Jennifer Torgrimmson of the ASDA, calling the
offices of several Senators, confirming and scheduling
appointments for the following afternoon. After exchanging many
emails with Jennifer and with Dr. Phillips, he finally met them
in person.
Wednesday morning dawned and it was pouring rain! We suspect that
this lowered the crowd, since the idea of the "walk"
seemed to imply we would be outside for part of the time.
However, all of the House and Senate office buildings are linked
with underground tunnels, so the rain was really no obstacle. The
crowd began assembling in the Caucus Room of the Russell Senate
Office Building about 10:30 am, with a scheduled start at 11:00.
The room seated about 500, and one side of the room featured a
buffet sandwich/salad buffet to feed the sleepwalkers.
As more and more people jammed into the room, the noise and
confusion level grew higher and higher. To add to the confusion,
the boxes of T-shirts and other literature and supplies weren't
delivered to the meeting room until just after 11:00, as the
appropriate workers couldn't be found to bring the heavy load up
in the elevator. Dr. Phillips opened the meeting, welcoming
everyone, and urging folks to pick up a banner for their state,
and for others from that state to "rally round the
banner". We now had nearly 1,000 people trying to mill
around in a room with 500 chairs. We were wall-to-wall people and
it was organized chaos. In the back of the room, people were
trying to dig into the boxes to find a T-shirt.
It took nearly 30 minutes to get everyone into some semblance of
order and to resume the remarks by the various speakers. Dr.
Roman talked about why we were there. Dr. James Walsh talked
about the current role of the National Center on Sleep Disorders
Research. He briefly outlined the production of the National
Research Plan, which had just been adopted, and he showed the TV
public service announcement about Sleep Apnea (which we saw at
our May meeting).
Dr. Dement talked about the National Commission's efforts and
their work with Senator Mark Hatfield to get a bill through
Congress to establish the National Center. Following this
lead-in, Dr. June Fry, the outgoing President of the ASDA
presented the first ASDA Mark Hatfield Public Policy Award to
Senator Mark Hatfield. The Senator was unable to attend, as he
was in Oregon, but his daughter, a physician, was on hand to
accept the award on his behalf.
Following the award, we were given some training in how to lobby
our legislators. Dale Dirks showed a video on how to organize the
lobbying effort for a non-profit organization, and followed with
some other tips, and reviewed the message that we were taking to
the legislators. Essentially we asked Congress to identify a
budget for the NCSDR; appoint a full-time director for the
Center; continue funding the collaboration between the Dept. of
Transportation and the Center to the $2 million level in fiscal
'97; and to fund the NIH and NHLBI budgets by 6.5%.
At this point, the patients took to the podium. Our first speaker
was Barry Kowalski, an attorney in the Department of Justice, who
was one of the Federal prosecutors in the Rodney King trail. He
suffers from Restless Leg Syndrome (RLS). He talked about the
impact of RLS on his ability to sleep, during trials and when he
was a platoon leader during the Vietnam War. Ruth Nebus
represented Narcolepsy and spoke about the problems patients
endure when they are not treated. Representing the 25 million
folks with sleep apnea, Dave was the final patient speaker. He
repeated his full talk, letting us hear what he told the
Sleepwalk crowd (a copy of the full talk will be available as a
handout at the next meetings--it's too long to include in the
newsletter. He even added a few paragraphs that he had edited
out, due to the 5 minute time constraint for each of the patient
speakers.
Dr. Dement closed the rally with a few well chosen words and then
led us in a rousing yell of "Wake Up America!"
Following this, the sleepwalkers joined together in groups by
state and went off to lobby with their Senator or Representative.
Dave Hargett, Sleep Apnea Patient and Sleep Activist
Delivered May 29, 1996 --
Russell Senate Office Building, Caucus Room, Washington, D.C.
Introduced by Dr. Barbara Phillips, Chair of the Governmental
Affairs Committee, ASDA
Thank you, Dr. Phillips.
It is an honor to be invited to address this rally on behalf of the millions of Americans who have sleep apnea. Let me share some of my own experience.
I've snored for years, but several years ago, I found myself snoozing after meals and snoring my way through NFL games. I quit reading the newspaper, because I could never get past page 3. I took long naps every weekend. I was waking up 3 or more times a night to urinate. I thought I had a bladder problem. I was having morning headaches, so I began taking Advil almost daily.
Somehow I never thought any of this was serious enough to talk to my doctor and I certainly had no idea it might be related to sleep! After all, I was asleep as soon as my head hit the pillow!
Soon I found myself driving the expressways at 65 mph with the window down, the radio loud and slapping my face to stay awake At least once a week I would wake up when my car swerved onto the shoulder. I was an accident waiting to happen.
At work I began having trouble staying awake in meetings. In the late afternoon, I would fall asleep reading my email, and my mind would wander and refuse to concentrate.
At home, my wife started sleeping in the other room due to the heroic nature of my snoring. I began having trouble getting out of bed due to extreme fatigue. I would even fall asleep sitting up on the edge of the bed after I turned off the alarm. I started waking up choking for breath, and began sleeping in a chair in the living room. Life was becoming a living hell!
My first clue was an article about apnea in the Chicago Tribune. My primary care doctor admitted he knew little or nothing about sleep disorders. Nine months later, in June 94, my wife and I went to a community talk about sleep apnea. If the doctor listed 20 symptoms, I had 18. Now I was sure! We just needed the sleep study to confirm it.
During the summer I never worked a 5-day week. At least one day a week I was so exhausted that I would call in sick.
I was finally diagnosed in September. My initial sleep study showed an index of 82. My O2 desaturation averaged 80 percent, and dropped as low as 52. I had only 6.5 minutes of REM sleep in a 5 hour study.
When my doctor saw the results, he wanted me on CPAP immediately and four hours later my machine was delivered and demonstrated. I started at 8 cm, and was titrated later to 13.
I saw a major difference in the quality of my life after only 4 nights, when I found myself "going and going" for 14 hours that first Saturday, without taking a nap or even feeling sleepy or tired. For me, CPAP has, indeed, been the "miracle of treatment".
A few months later I began attending the monthly meetings of the Elk Grove Village A.W.A.K.E. group. That's Alert, Well, And Keeping Energetic. We are part of the A.W.A.K.E. Network of support groups affiliated with the American Sleep Apnea Association. It was terrific to meet people who had the same problem, so we could share our experiences and support each other, and so we could begin to educate ourselves about the impact that sleep apnea was having on our lives. I've since reached stage three, where I am doing my best to reach out to others, to help create more awareness of sleep apnea and all sleep disorders. That outreach effort has brought me here today.
Personally I've found that public awareness of sleep apnea is very low, judging by the questions I'm asked. Physician awareness also varies considerably. I recently got calls after an article was published about our AWAKE group. One older gentleman described all the classic symptoms of sleep apnea, including falling asleep sitting at the red light while driving. Concerned, Frank talked to his physician. The response: "Quit driving!"
Betty was sent to her doctor by her co-workers, because she couldn't stay awake at work. Betty thought her fatigue had come in the aftermath of her husband's accidental death and from the stress of working long hours. Her physician ordered a sleep study the day Betty saw him. One month later, she had been diagnosed, titrated, was on CPAP and feeling great! Two doctors, two totally different answers.
I'm really angry that it takes so long for those of us who suffer the many symptoms of apnea to find out that we do have a medical problem and that it can be treated. The knowledge gap is huge, for both the patient and the medical profession.
Increasing public awareness and medical education takes money. But as a bumper sticker I saw over the weekend says: "If you think education is expensive, try ignorance".
In a few minutes we will be talking to our legislators and their aides. Tell them that life is really tough when you suffer from undiagnosed and untreated sleep disorders. Tell them that there is an economic benefit for the nation when we enjoy great sleep; that medical bills will be lower, productivity higher, and deaths from traffic accidents, heart attacks and strokes significantly reduced.
Tell them that Great Sleep is a worthwhile goal, and best of all, it is a win-win situation for everyone.
Tell them we need their help -- now!
Thank you.
When I first heard about the event that we are participating in today, I didn't realize that it had a theme ( "Don't Take Sleep Disorders Lying Down"), so one day I faxed Dr. Dement and Jennifer Torgrimson of the ASDA, and suggested that we name the event "The Great Sleep Walk". I suggested "Walk" because we were too few to march, and "Great Sleep" because that was our ultimate goal. I thought it had a nice zing to the name and would play well with the media.
After lots of dialogue and discussion, and some changes along the way, here we are at the Great American Sleepwalk. It's been hard work to get here, but it's also been fun to get here.
Several years ago, I didn't even realize that sleep apnea existed. Now I'm a patient, and a sleep activist. I never dreamed that the hell I went through before diagnosis and treatment, would lead me to this point. In fact, for years I had so little REM sleep that I claimed I never dreamed at all!
My favorite musical of all time is Les Miserables. I'd like to quote from one song, sung by a group of rebellious young men who want to change the status quo, but with one slight word change, replacing slaves with sleepy:
Do you hear the
people sing,
Singing the song of angry men;
It is the music of a people who will not be sleepy
again.
When the beating of your heart
Echoes the beating of the drums,
There is a life about to start
When tomorrow comes.
Will you join in our crusade?
Who will be strong and stand with me?
Beyond the barricade, is there a world you long to see?
Then join in the fight that will give you the right to be free.
These students had a dream, a vision. So do I. I hope that all of
you will, indeed, join us in our crusade for public and medical
awareness of sleep disorders.
As we go forth, let me share my dreams with you:
I dream that the small steps we walk today through the halls of Congress will lead to giant strides in sleep in the coming years.
I dream that there will be education in sleep medicine for health care professionals, so that patients will be diagnosed and will be treated.
I dream that the public will be aware of sleep disorders, and they will ask for treatment.
I dream that the insurance industry will gain new understanding of sleep disorders, and that treatments will be readily funded.
I dream that the employers of America will recognize the impact of sleep deprivation and sleep disorders and work together with their workers for a safe, healthy, and more productive workplace.
I dream that research efforts will be funded; that new diagnostic tools will be found; and that new therapies or even cures will be discovered.
But this dream is not, and cannot be, mine alone. This must be a shared dream if we are to make it come true.
We are here today to ask them to Wake Up! in Washington. We need our legislators to share this dream with us.
Let us all agree, then:
No one should suffer Insomnia in Indianapolis; nor endure Restless Legs in Rochester. There is no reason to have Narcolepsy in Newark; no reason to fight Apnea in Atlanta; no reason to be Sleepless in Seattle.
Let us all dare to dream of that day, when those of us with sleep disorders can say with great conviction:
SLEEP AT LAST,
SLEEP AT LAST;
THANK GOD ALMIGHTY,
GREAT SLEEP AT LAST!
A.P.N.E.A. NET is dedicated to providing News and Education to Sleep Apnea Patients and
their family members,
and to increasing Public Awareness of Sleep Apnea through Patient Activism. See our Disclaimer
for additional information.
Return to the A.P.N.E.A. NET
For additional information, please email webmaster@apneanet.org
This site created and maintained by Dave Hargett,
Chairman and Founder of The Apnea Patients' News,
Education & Awareness Network
Copyright © 1997-2006 by The Apnea Patients' News, Education & Awareness Network
