Pegge's Experiences with CI Research's Experiments
By
Frances Parsons
When I learned through e-mail about a cochlear implant research
project at the University of Texas Southwestern medical Center in Dallas-an
announcement containing mind-boggling technical and scientific words-I simply
shrugged it off. What piqued my attention was ASL Mafia and Deaf Culturists
in the Washington, D.C. area and California that vehemently opposed to this
new program and made mountains out of molehills about the dangers. Later, a
friend, Marl Hodge, who is hereditarily deaf but who is open-minded about
anything, asked me if I would be interested to apply to the project as a
guinea pig. I would be generously paid for volunteering. Why not? We both
applied, and e-mail volleyed back and forth between us and Kristi, a Research
Assistant/Ph.D student. Her punctuality and dedication impressed me to no
end.
In mid-February 2003, Marl flew to Dallas from California and I
from Washington, D.C., and we were provided a rental car-a large,
smooooth-driving Buick. We were assigned to share a suite containing a living
room with two bedrooms at Candlewood Suites, a stone's throw from the
Research Center. We were given $30 per diem, all paid by the CI Center. The
first day we met with the staff at Advanced Hearing Research Center, and
Philip Wolfe, a CI user from California, joined us. With three of us,
assignments at different hours were given to us, so we used pagers to let
each other know about when to take a turn using the car of picking and
dropping each other off. Pagers are indeed a godsend!
I admit I paid scant attention to the Human Subject Consent Form
for the purpose of the study and breezed through its 12 pages containing
high-sounding sentences. The university spear-heading this project is The
University of Texas at Dallas (UTD). The research center is the UTD/Callier
Advanced hearing Research Center. Our scans were conducted at the University
of Texas Southwestern Medical Center (UTSW), which is also one of the
universities sponsoring this project. The brain showed the area of the brain
that was activated by sound and they were SPECT (Single-Photon Emission
Computed Tomography). The three groups were normal hearing individuals,
individuals with good benefit from their CI and individuals with poor benefit
from their CI.
In spite of sensors (electrodes) stuck on our heads to monitor
the brain waves created in response to sound, we enjoyed watching TV movies
of our choice and listened to different sounds of beep, beep, or bap, bap,
etc. I felt like Queen Cleopatra, reclining on such a comfortable chair to
watch the movies after Kristi placed sensors on my head. Most unfortunately
for me, I did not get to finish watching "Lords of the Rings". I had a
hearing test and listened to words that I had forgotten from years ago when I
wore a hearing aid.
At the Nuclear Medical Center a needle is inserted into the arm
and is connected to plastic tubing and a small amount of a saline solution in
order to keep intravenous lines open as well as a small amount of a
radioactive tracer that goes to the brain for about 20 minutes. This allows
Alex, the nuclear medical technologist, to measure the flow of blood to each
brain region, and then there is a 90-minute wait before one lies down on a
patient imaging table with his head positioned inside the SPECT machine that
looks like a CAT scanner. Pictures show the brain blood flow as the cameras
rotate around our heads for about 25 minutes. In spite of my pet peeve about
needles inserted into my arm, I simply wanted to try anything possible that
helps with hearing. Also I was paid $100 for each brain scanning three times,
$25 per audiology testing session four times, with a bonus of $50 if I
completed the entire battery of tests. Money and experience speak, so I
signed the consent forms.
I experienced sheer frustration from listening and lip-reading a
videotaped story with a woman speaking a blue streak without closed captions!
I bravely tried to listen to her voice that sound like a piano playing and to
lip-read her tight lips, and I ended up wondering if her earrings were
identical and how long her lipstick would last from marathon talking for 20
minutes. During the last session my cochlear implant battery went dead, and I
shouted for Thomas, a research scientist. He didn't hear my call and was
visibly disappointed that I missed out on the rest of the testing because of
the dead battery. I kidded him, "You should have a CI!" Frankly I failed all
the questions that were asked about that speaker's story! I guess the famous
motto, "You can't teach an old dog new tricks" applies here.
I won't go into further details about the experiments done on us.
Most unfortunately for Marl, her veins were practically invisible and only
her neck could be inserted with a needle, but the nuclear technologist
refused to insert so close to her head for head scanning. When Marl realized
she could not cope with the intravenous line, she withdrew her candidacy and
returned home after the second day. I, too, had a similar problem and asked
the technologist to try the more prominent veins in my eight-decade old
wrist. I got black and blue bruises which I dubbed souvenirs from Dallas!
All candidates who are eligible to apply must be between 13 and
85 years old. Pregnant and breast feeding women are not included.
Participants in this program include 34 hearing people, 48 hearing aid users,
and 124 CI users. The CI Research Center collaborates with NIH in Bethesda,
MD and keeps in close contact with the FDA.
Note: Texan hospitality-
I simply want to acknowledge to these such wonderful researchers
and their outstanding teamwork- Kristi, Kathryn (Program Coordinator); Alex,
Thomas and Cooper, (Ph.D. student) The atmosphere exuded friendliness,
cheerfulness, amiability, patience, and professionalism. I came away with
high hopes this CI research will make a tremendous contribution to the future
of deaf babies and toddlers of hearing parents, as well as some deaf parents
in the coming generation.
I was amazed how the Texas drivers showed respect by slowing down
and permitting me to pull up to the next lane as compared to those in MD, VA
and D.C. where they demonically by passed my car with left blinking light.
Then, while visiting my long-time friend, Ruth Cosgrove and her
daughter, Ann, in Arlington, Texas, I got lost 65 miles west of Fort Worth at
night. I happened to spot a truck driver checking his wheels prior to pulling
out. I asked him for directions to my destination. He said it would be a
45-minute drive and suggested I follow him. He drove at top speed through
complicating and forking off curves of the highways. I kept my eyes riveted
on the four red lights on the top of his truck, otherwise I would fall behind
and get lost again. He reached the spot when he blinked the red light
signaling for me to turn south. I reached Ruth's home four hours late, and
Ann said they were so worried that she called two hospitals for my
whereabouts. If only Ruth had given me Ann's e-mail address, I could have
easily paged her! To this day I wish I knew the name of this highway
gentleman and thank him, for, otherwise, I would have had to park behind a
hospital, or at shopping mall or a truck stop, and sleep in my car overnight.
By
Frances Parsons
When I learned through e-mail about a cochlear implant research
project at the University of Texas Southwestern medical Center in Dallas-an
announcement containing mind-boggling technical and scientific words-I simply
shrugged it off. What piqued my attention was ASL Mafia and Deaf Culturists
in the Washington, D.C. area and California that vehemently opposed to this
new program and made mountains out of molehills about the dangers. Later, a
friend, Marl Hodge, who is hereditarily deaf but who is open-minded about
anything, asked me if I would be interested to apply to the project as a
guinea pig. I would be generously paid for volunteering. Why not? We both
applied, and e-mail volleyed back and forth between us and Kristi, a Research
Assistant/Ph.D student. Her punctuality and dedication impressed me to no
end.
In mid-February 2003, Marl flew to Dallas from California and I
from Washington, D.C., and we were provided a rental car-a large,
smooooth-driving Buick. We were assigned to share a suite containing a living
room with two bedrooms at Candlewood Suites, a stone's throw from the
Research Center. We were given $30 per diem, all paid by the CI Center. The
first day we met with the staff at Advanced Hearing Research Center, and
Philip Wolfe, a CI user from California, joined us. With three of us,
assignments at different hours were given to us, so we used pagers to let
each other know about when to take a turn using the car of picking and
dropping each other off. Pagers are indeed a godsend!
I admit I paid scant attention to the Human Subject Consent Form
for the purpose of the study and breezed through its 12 pages containing
high-sounding sentences. The university spear-heading this project is The
University of Texas at Dallas (UTD). The research center is the UTD/Callier
Advanced hearing Research Center. Our scans were conducted at the University
of Texas Southwestern Medical Center (UTSW), which is also one of the
universities sponsoring this project. The brain showed the area of the brain
that was activated by sound and they were SPECT (Single-Photon Emission
Computed Tomography). The three groups were normal hearing individuals,
individuals with good benefit from their CI and individuals with poor benefit
from their CI.
In spite of sensors (electrodes) stuck on our heads to monitor
the brain waves created in response to sound, we enjoyed watching TV movies
of our choice and listened to different sounds of beep, beep, or bap, bap,
etc. I felt like Queen Cleopatra, reclining on such a comfortable chair to
watch the movies after Kristi placed sensors on my head. Most unfortunately
for me, I did not get to finish watching "Lords of the Rings". I had a
hearing test and listened to words that I had forgotten from years ago when I
wore a hearing aid.
At the Nuclear Medical Center a needle is inserted into the arm
and is connected to plastic tubing and a small amount of a saline solution in
order to keep intravenous lines open as well as a small amount of a
radioactive tracer that goes to the brain for about 20 minutes. This allows
Alex, the nuclear medical technologist, to measure the flow of blood to each
brain region, and then there is a 90-minute wait before one lies down on a
patient imaging table with his head positioned inside the SPECT machine that
looks like a CAT scanner. Pictures show the brain blood flow as the cameras
rotate around our heads for about 25 minutes. In spite of my pet peeve about
needles inserted into my arm, I simply wanted to try anything possible that
helps with hearing. Also I was paid $100 for each brain scanning three times,
$25 per audiology testing session four times, with a bonus of $50 if I
completed the entire battery of tests. Money and experience speak, so I
signed the consent forms.
I experienced sheer frustration from listening and lip-reading a
videotaped story with a woman speaking a blue streak without closed captions!
I bravely tried to listen to her voice that sound like a piano playing and to
lip-read her tight lips, and I ended up wondering if her earrings were
identical and how long her lipstick would last from marathon talking for 20
minutes. During the last session my cochlear implant battery went dead, and I
shouted for Thomas, a research scientist. He didn't hear my call and was
visibly disappointed that I missed out on the rest of the testing because of
the dead battery. I kidded him, "You should have a CI!" Frankly I failed all
the questions that were asked about that speaker's story! I guess the famous
motto, "You can't teach an old dog new tricks" applies here.
I won't go into further details about the experiments done on us.
Most unfortunately for Marl, her veins were practically invisible and only
her neck could be inserted with a needle, but the nuclear technologist
refused to insert so close to her head for head scanning. When Marl realized
she could not cope with the intravenous line, she withdrew her candidacy and
returned home after the second day. I, too, had a similar problem and asked
the technologist to try the more prominent veins in my eight-decade old
wrist. I got black and blue bruises which I dubbed souvenirs from Dallas!
All candidates who are eligible to apply must be between 13 and
85 years old. Pregnant and breast feeding women are not included.
Participants in this program include 34 hearing people, 48 hearing aid users,
and 124 CI users. The CI Research Center collaborates with NIH in Bethesda,
MD and keeps in close contact with the FDA.
Note: Texan hospitality-
I simply want to acknowledge to these such wonderful researchers
and their outstanding teamwork- Kristi, Kathryn (Program Coordinator); Alex,
Thomas and Cooper, (Ph.D. student) The atmosphere exuded friendliness,
cheerfulness, amiability, patience, and professionalism. I came away with
high hopes this CI research will make a tremendous contribution to the future
of deaf babies and toddlers of hearing parents, as well as some deaf parents
in the coming generation.
I was amazed how the Texas drivers showed respect by slowing down
and permitting me to pull up to the next lane as compared to those in MD, VA
and D.C. where they demonically by passed my car with left blinking light.
Then, while visiting my long-time friend, Ruth Cosgrove and her
daughter, Ann, in Arlington, Texas, I got lost 65 miles west of Fort Worth at
night. I happened to spot a truck driver checking his wheels prior to pulling
out. I asked him for directions to my destination. He said it would be a
45-minute drive and suggested I follow him. He drove at top speed through
complicating and forking off curves of the highways. I kept my eyes riveted
on the four red lights on the top of his truck, otherwise I would fall behind
and get lost again. He reached the spot when he blinked the red light
signaling for me to turn south. I reached Ruth's home four hours late, and
Ann said they were so worried that she called two hospitals for my
whereabouts. If only Ruth had given me Ann's e-mail address, I could have
easily paged her! To this day I wish I knew the name of this highway
gentleman and thank him, for, otherwise, I would have had to park behind a
hospital, or at shopping mall or a truck stop, and sleep in my car overnight.