Page 8 - 2019 Fall CMTA Report

ST. LOUIS CONFERENCE
(continued from page 6)

Physiatrists are also experts in pain
medication. There aren’t that
many listed in Kansas City, Mis-
souri, but I think it would be very
helpful for me as I seek physical
therapy to find a facility with one
on board to coordinate treatment.
Dr. Jones talked about the impor-
tance of exercising and strength
building and improvements in
adaptive equipment that help peo-
ple function better in their homes.
Kyle Fiala, DPM, from
University of Missouri Health
Care, reviewed surgical options for
treating the CMT foot. While
always the last thing to try, if
surgery goes exactly as expected
and is a total success, it can get
Sisters Meredyth and people out of braces, he said.
Elyzabeth Waymam
The five-hour conference con-
cluded with information from
YOUTH OUTING IN ST. LOUIS orthotics and physical therapy spe-
cialists. Fortunately, the conference
hile conference attendees networked and listened to presenta- leaders allocated plenty of time for
W tions, the kids in the room piled into a van and headed out Q&A. For $40, and a reasonably
for a day on the town. They got to know each other on the ride to priced hotel room, the conference
the first stop, finding connecting easy because everyone understood was so worth it. I’m looking for-
what it’s like to deal with CMT. ward to others.
The first stop was the famous St. Louis Gateway Arch. The To stay current with CMT
group rode one of the tiny transport pods up to the top, some 630 research, scroll to the bottom of
feet in the air. After the Arch, the group lunched at Fitz’s, a restau- any of the CMTA website pages,
rant and soda factory with windows where diners can eat while and click on “Subscribe to the latest
watching production. Group members indulged in ice cream sodas news from CMTA.” In the “Our
bigger than their heads while talking about the ups and downs Research” section, you can also sub-
of life with CMT. The day ended with a tram tour through the mit a CMT “Patients as Partners in
animal preserve at Grant’s Farm. Research” profile and subscribe to
Throughout the day, the kids connected with and took care of receive research updates about a
each other, leaving their self-consciousness behind. CMTA Youth specific type of CMT.
Director Jonah Berger, who led the trip, said that any child who As far as I know, I am the first
deals with a daily challenge like CMT one in my family to have CMT,
earns a certain wisdom and “magic occurs and I have no friends or anyone
whenever you get those children together outside the medical community I
in the same place. You get to watch them speak to about it. So, for me, the
relax and be their truest selves.” best part of this conference was
Jonah encourages everyone to attend meeting some wonderful people,
CMTA Patient/Family Conferences young and old, who reminded me
when they come to a nearby venue and I was not alone. And, after seeing a
to sign their kids up for the youth out- 3-year-old with braces, it made me
ing. “It is a day they will not soon count my blessings that my CMT
forget,” he said. didn’t worsen until my 60s. h
Kathie Kerr, 66, lives in Kansas City, MO.

8 THE CMTA REPORT FALL 2019