A few years ago, I became
acquainted with Jolie Parker, M.S., CCC-SLP. I was very fortunate to be
selected to trial with her medical device, now called the The
PhagiaFlex™
Through the years I
have admired her tenacity and passion for pursuing methods to improve swallowing
function! Her
is Jolie’s journey and how she has evolved into the therapist she is today!
The PhagiaFlex™ Journey
By Jolie Parker,
MSCCC-SLP
When I first started
working with dysphagia patients many, many years ago, I did not see big
improvements at all from the exercises I used with patients. In fact, I rarely
saw ANY improvements in a patient's actual swallow function. It seemed like my job was just to observe
patients while they ate and then tell them all the horrible, life altering
changes I was going to make to their foods and liquids so that they wouldn't
choke to death or die from pneumonia. This was not the job I had dreamed of! I
wanted to really help people. I wanted them to be able to actually recover and to
eat whatever they wanted.
When I started working with patients
who were on PEG tubes and could not eat at all, it absolutely broke my heart. I
could not imagine what life would be like if I could not eat. I wanted to help
them, to cure them, with every ounce of my being! I kept doing the exercises
with them that I had learned in school, and I would literally do the exercises
myself while they did them to feel what muscles they worked and how tired the
muscles would get. A lot of the exercises really did not seem to do much.
After a while I narrowed it down to
a few good tongue exercises and the Shaker exercise which really made my
suprahyoid muscles (under the chin) burn and ache. It seemed logical to me that
those muscles would be extremely important in swallowing normally. That's the
spot where the magic happens! So, I started really targeting that area and
trying to get my patients to work very hard, until they cried
"Mercy"! And it worked! We started seeing some actual improvements in
swallowing, such as less throat clearing and coughing when eating and drinking,
and less wet vocal quality after swallowing. Some of my patients went back for
another MBSS and there was noticeable improvement!
I loved the Shaker exercise
especially. I could feel it in my own suprahyoids when I did it, better than
any other exercise. But, some of my patients couldn't (or wouldn't) lie down to
do the exercise. It was a real hassle, and sometimes not even possible. So, I
asked my handy hubby to help me make an exercise device that could provide
resistance under the chin, in an upright position. We tried all kinds of
things! We came up with some really crazy looking contraptions, but then we
finally figured out how to make a beautifully simple and effective S shaped
device that fits under the chin and against the chest and really isolates the
suprahyoid muscles!
I had never heard of the term "Chin
Tuck Against Resistance" or CTAR at that time. I called mine the
"Head Nod Against Resistance" exercise. I also discovered that if I
opened my mouth against the resistance, I could feel it in my suprahyoid
muscles a lot also. I called that the "Jaw Opening Against
Resistance" or JOAR exercise. My focus was always on strengthening the
suprahyoid muscles, but recently two of the smartest people I know have
suggested to me that these exercises may actually affect the cranial nerves
that run through this area, which could be the reason for the great results.
That is certainly a possibility, which I really hope someone will research
further in the near future!
When I started using these exercises
with my new device which I called the ISO Swallowing Exercise Device, my
patients loved it. They were so much more motivated with this device than I had
ever seen patients be with the other dysphagia exercises I had tried. They all
wanted to keep the device, and they wanted to practice with it on their own
everyday outside of therapy! And they started getting better!
I saw such a difference in the
amount of progress my patients made verses the progress my patients used to
make, that I felt like I just had to get this information out to all the people
who needed it. But, I learned very quickly that is a very difficult task! I
wrote to professors at Universities to try to get them to research my new
device. I told them about the great results I was seeing, and some of them
seemed interested. They considered it, but then the answer I always got was,
"I just don't have time to research this." I was shocked every time I
heard that. How can you not have time to research something that can actually make
it possible for people to eat again?
My conclusion was that they must
just not believe me about how good it is working. I got very discouraged. I
kept trying to find a researcher, a little bit, and I kept posting testimonials
and case studies on my website. Money was always tight, so that was all I could
really do.
Little by little, it grew in
popularity. We would ask our customers how they heard about us, and they almost
always said that someone who had used our device told them about it. Well, that
was very nice, but it did not give us any way to multiply that to get the word
out to more people, so we were kinda stuck. We tried some small ads, but they
never seemed to get us any new customers. We tried selling it for next to
nothing, but it didn't change the sales at all, but year after year, more and
more people started buying our device.
Eventually, we started getting
orders from some big hospitals and universities, such as Yale, Mayo Clinic, and
Cambridge University Hospitals! We even got re-orders for several more from
many big hospitals after they tried one and really liked it. That was so
exciting, but still, we could not get anyone to research this device.
Then, one day we received an email
from a researcher in South Korea, Jisu Park. He said he had just completed a
research study using our device, which we have recently renamed "The
PhagiaFlex CTAR Device", and he said the results were very good! He was
planning to get his study published in a medical journal and he wanted to know
how to reference our device! I can't tell you how wonderful those words were to
me.
Soon after that we started hearing
from other researchers saying they were using our device in research studies.
When it rains it pours! Jisu Park said he is also working on two more research
studies using our devices, including a large study. I am so excited to see the
results of all of these studies. I truly believe they are going to discover
that these exercises can help people so much. I am so thankful for the
researchers who conduct objective tests to provide solid evidence that people
can trust, so people can confidently get the help they need.
It took over a year from the time
Jisu Park told us about the research study until it was finally published just
last month. This was an accomplishment that my husband and I waited a very,
very long time to see come to fruition. It was published in the journal Neuro
Rehabilitation. Here is a small exerpt:
Effect
of chin tuck against resistance exercise on patients with dysphagia following
stroke: A randomized pilot study
"This study investigated the effect of
CTAR on the swallowing function in patients with dysphagia following subacute
stroke... The experimental group performed CTAR using the CTAR device. The
control group received only conventional dysphagia treatment. RESULTS:The
experimental group showed more improvements in the oral cavity, laryngeal
elevation/epiglottic closure, residue in valleculae, and residue in pyriform
sinuses of FDS and PAS compared to the control
group (p < 0.05, all)."
PMID: 29562558
We've come a long way
since we started this journey back in 2010. We now have 4 different models of
the PhagiaFlex™ CTAR Device. We have a regular size hand held, a pediatric size
hand held, a table top hands free, and a chest mount hands free device. It's
been a very long, frustrating, beautiful, rewarding journey... and I have a
feeling we have only just begun!
Jolie Parker,
MSCCC-SLP
Alternative Speech and
Swallowing Solutions, Inc.
www.alternativespeech.com
Click here for information on Kinesio Taping seminars
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Information presented in this blog is designed to promote ideas and stimulate discussion. The goal of this blog is to provide a safe and friendly place to share stories or experiences, build an understanding of various teaching and treatment styles, and to network with each other.
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