Living With ALS



HOST: Army Veteran Sandy Stuban is used to
a lot of juggling in her life. She's a busy mom, a respected expert in nursing, and now,
the author of a widely acclaimed book. But Sandy manages something else in her life–something
that many of us couldn't imagine. NARRATOR: At 38 years of age, with an infant
son and a bright future ahead, Army nurse Sandy Stuban learned she had an incurable
disease–A-L-S–better known as Lou Gehrig's disease. Doctors gave her three years to live.
PAMELA HARMAN: ALS is amyotrophic lateral sclerosis and it is a progressive neurological
disease which eventually takes over the entire nervous system.
NARRATOR: Dr. Pamela Harman is an expert in adaptive technology and one of Sandy's doctors.
HARMAN: It affects motor skills. The patient ends up being trapped within the body, which
progressively doesn't work. And the mind is fine.
NARRATOR: Rather than sink into despair, Sandy refused to surrender. She turned to VA for
the specialized care needed to battle her debilitating illness. That was 12 years ago.
SANDY STUBAN: I began receiving my care at the VA in 1998, after being medically retired
from active duty. I was nervous, and I didn’t know what to expect. The medical center definitely
surprised me, with their incredible support, and the professionalism of their staff.
NARRATOR: That support has enabled Sandy to live a productive, rewarding life. And she's
far exceeded her doctor's initial expectations. HARMAN: She's very bright and she's very flexible,
and that more than anything else, really, that and her strength are remarkable, because
it’s allowed her to maintain a presence in the family, in her son’s life, certainly.
NARRATOR: But, inevitably, Sandy's disease has taken its toll. Now, almost completely
paralyzed, she communicates with others through this adaptive computer system–operating it
with one of the few muscles she can still control–her cheek.
HARMAN: This is the muscle detector. And you have it on with a sticky pad on the skin surface,
and it will read the muscle movement and send it directly to the computer.
NARRATOR: And her computer also has word prediction so that Sandy doesn't have to type entire
words. She can also store phrases and paragraphs to use again.
STUBAN: Now everything can be done on-line. Instant messaging lets me talk in real time.
I can text my son. I am completely independent when I am on the computer.
NARRATOR: Sandy has used this advanced technology to write an inspirational book–an autobiography
titled "The Butcher's Daughter: The Story of an Army Nurse with ALS."
STUBAN: I decided I could use myself as an example to help others with any of life’s
challenges. NARRATOR: Through VA-provided programs like
telehealth and home-based care, Sandy receives most of her care at home–care that's provided
by the dedicated staff of Washington, D.C.'s VA Medical Center.
SUSAN JACKSON: I would say Sandy Stuban is probably the most extraordinary person that
I have known in my lifetime. NARRATOR: And Sandy is determined to help
other paralyzed patients–and those who care for them. Along with her book, she contributes
to medical journals, is active in an online support group for A-L-S patients, and makes
every effort to spread her positive outlook wherever she goes.
STUBAN: There is so much I want to do. First, I want to see my son grow up, graduate from
high school, go to college, be successful, get married, and on, and on. My hopes are
for a breakthrough with ALS research. Right now, there is nothing. No effective treatment
at all, but the F-D-A just approved the first stem cell clinical trial for A-L-S, so no
matter how discouraging things may seem, there is always a reason to hope.
HOST: A remarkable story and a remarkable woman who credits VA with giving her the resources
to remain independent–at home with her family. If you're interested in reading about Sandy's
life and what she's learned from her many experiences, her highly acclaimed book is
available online.

Author Since: Mar 11, 2019

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