printer-friendly version (PDF) - Reflex Sympathetic Dystrophy ...

PEOPLE WITH CRPS | THEIR STORIES AND ACCOMPLISHMENTS
Lisa Delia
KEEP ON MOVING By Ed Delia
My wife, Lisa, was diagnosed with RSD in May 2003,
approximately five months after she triggered the
syndrome by jumping up to squash a bug on the
ceiling. After being misdiagnosed by two orthopedists,
Lisa was in physical therapy and not making
much progress. On the Internet, Lisa found a condition that
resembled the symptoms she was experiencing. It was RSD.
Dr. Robert Knobler, a neurologist in Fort Washington, Pennsylvania
who has treated a lot of people with RSD, started Lisa on
a regimen of walking and water therapy. Consistent physical
activity combined with (warm) water therapy seems to help her
condition. We have found that moving is a must. Move when
you don’t want to, put the work in every day. Evidence of
progress comes in months and years.
Last spring, “movement” escalated when we were introduced
to the Achilles track club, a worldwide not-for-profit
organization that encourages people with all types of disabilities
Valerie Lacey, Emma Delia, Ed Delia, Albee Delia and Lisa Delia at the
Achilles Walk finish line.
PHOTO: LORRY MULHERN/CHRIS HERDER, LOTUSPHOTOGR APHERS.COM
to participate in mainstream athletics. It promotes personal
achievement and enhanced self-esteem. The founder, Dick
Traum, was the first amputee to run and finish the New York
marathon. Achilles was founded in 1983 and now has 110
chapters worldwide and 40 in the U.S.
Once a year Achilles sponsors “Hope and Possibility: 5
miler Run, Walk or Roll.” The participants all have some level
of disability—blind runners pair with sighted ones, quadriplegics
compete in wheelchairs, wounded Veterans walk or run. In
April of 2005, Lisa and I met with Mary Bryant from Achilles.
She instantly adopted our cause to promote awareness of RSD
and invited people with RSD to participate. We had less than
two months to pull this off.
Lisa called Jim Broatch, the Executive Director of RSDSA
to see if the organization could help spread the word. RSDSA,
with Celgene’s financial support, supplied T-shirts and paid the
entry fee for participants. Lisa sent email to support groups
across the country, inviting them to come. Her niece, Maria
Brown, a graphic arts student, created a logo for the poster that
graced the RSD tent. On June 26, in 82-degree-heat, 25 people
with RSD, their friends and family, joined thousands of others
who gathered in Central Park for the event. Our family,
including my 87-year-old mother and our three children,
Albee, Daniel, and Emma, joined Lisa and me on
the track. Some with RSD did the race in wheelchairs,
and others, like Lisa, used crutches.
It was not easy; at the four-mile point Lisa was tired
and hurting, but the people on the sidelines, including
New York firefighters, were cheering. “You can’t imagine
the camaraderie you feel you get from support of people,
like the firefighters and others egging you on,” Lisa said.
The walk took its toll. For about three weeks afterwards,
Lisa’s pain flared. Nevertheless, we will be back
in Central Park this August for the 2006 Achilles Walk.
In spite of the short notice, Lisa and the group of supporters
helped raise more than $26,000 for awareness
last June. We have to keep moving forward. We are
committed to raising awareness of RSD and the horrible
pain involved.
“ You can’t imagine the camaraderie you feel you get
from support of people, like the firefighters and
others egging you on.” LISA DELIA
26 | T H E PA I N P R A C T I T I O N E R | S P R I N G 2 0 0 6