People Profile: Emily Blum Continued...
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Fortunately, Emily’s
parents refused to stop looking for answers and found new doctors willing to
consider her case.
Finally, at age 15, six years after noticing any symptoms, Emily was correctly diagnosed at Rush Medical Center as having dystonia, a neurological movement disorder.
Doctors continued to monitor Emily’s progress and Emily continued on with her life as best she could. Her legs continued to turn inward and awkwardly kick up in the back. Because of these awkward positions, Emily’s balance was compromised and she eventually relied on a cane to help keep herself upright.
While Emily’s walking was limited, she found ways around her disability. She attended Kenyon College, a small liberal arts school in Ohio, and was able to ride her bicycle to classes, and did so even in rainy and wintry conditions. Later when she lived in Washington DC and worked at a political consulting firm, Emily relied heavily on taxi cabs and DC’s extensive public transportation system.
“I knew I walked funny, and at times it felt like the whole world was starring at me, but I couldn’t let that stop me from living my life, going to college, working, and living independently. When I was a kid, I really held my breath for that magic pill that would take away my dystonia, but I started giving up hope and really came to terms with my disability.” Emily remembered.
That’s not to say, however, that her life was easy. Forced into a forward-bending position and putting considerable strain on her knees and ankles, Emily suffered from chronic back pain and other sore joints. She also learned to endure endless unsolicited comments from strangers about her walking, and on one harrowing evening was followed and harassed by a group of men while walking home from dinner with friends.
Shortly before Emily’s 31st birthday, her neurologist at Rush Medical Center suggested she consider undergoing a new invasive brain surgery called deep brain stimulation (DBS). DBS involves inserting electrodes into the brain that are wired to a battery pack implanted in the chest or abdomen. Electrical pulses from the electrodes enter the brain and, for some dystonia patients, helps alleviate symptoms.
Emily went home that day, spent some time researching the surgery and immediately knew this was what she wanted to do.
“I knew if there was a chance I could walk normally again, I’d take it. Brain surgery sounded drastic and scary, but I’d do anything to reclaim control of my body and have the freedom to move,” Emily said.
After the system was implanted and turned on, Emily saw dramatic improvement within 2 weeks. Within 4 weeks, she no longer needed her cane and could easily walk for miles, an activity she once thought was never possible.
For Emily, DBS has been life-changing to say the least. These days she rises each morning at 5:30 am and happily strides out into the Chicago weather—rain, snow or shine. “Honestly, it doesn’t matter if it’s 105 degrees out or 105 below zero—I do it,” she says. “My mom always says to me, ‘You’re crazy! It’s too cold outside—why are you doing this?’ I always tell her, ‘Because I can.’”
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Finally, at age 15, six years after noticing any symptoms, Emily was correctly diagnosed at Rush Medical Center as having dystonia, a neurological movement disorder.
Relieved that her disorder finally had a name, there was
little her doctors could do to relieve her discomfort. She took medications to
reduce the muscle spasms, but high doses left her even more exhausted and
concentrating in school was difficult.
Doctors continued to monitor Emily’s progress and Emily continued on with her life as best she could. Her legs continued to turn inward and awkwardly kick up in the back. Because of these awkward positions, Emily’s balance was compromised and she eventually relied on a cane to help keep herself upright.
While Emily’s walking was limited, she found ways around her disability. She attended Kenyon College, a small liberal arts school in Ohio, and was able to ride her bicycle to classes, and did so even in rainy and wintry conditions. Later when she lived in Washington DC and worked at a political consulting firm, Emily relied heavily on taxi cabs and DC’s extensive public transportation system.
Emily volunteered with the Dystonia Medical Research
Foundation which funds medical research and provides support for those affected
by dystonia. She authored publications for children and young adults with
dystonia and offered support and advice to those facing similar challenges.
“I knew I walked funny, and at times it felt like the whole world was starring at me, but I couldn’t let that stop me from living my life, going to college, working, and living independently. When I was a kid, I really held my breath for that magic pill that would take away my dystonia, but I started giving up hope and really came to terms with my disability.” Emily remembered.
That’s not to say, however, that her life was easy. Forced into a forward-bending position and putting considerable strain on her knees and ankles, Emily suffered from chronic back pain and other sore joints. She also learned to endure endless unsolicited comments from strangers about her walking, and on one harrowing evening was followed and harassed by a group of men while walking home from dinner with friends.
Emily eventually moved back to Chicago to be closer to
family and took a job at a public interest communications firm. She continued
to rely on her cane, cabs, and Chicago’s elevated train to get around. The back
pain, stares and comments also remained pervasive.
Shortly before Emily’s 31st birthday, her neurologist at Rush Medical Center suggested she consider undergoing a new invasive brain surgery called deep brain stimulation (DBS). DBS involves inserting electrodes into the brain that are wired to a battery pack implanted in the chest or abdomen. Electrical pulses from the electrodes enter the brain and, for some dystonia patients, helps alleviate symptoms.
Emily went home that day, spent some time researching the surgery and immediately knew this was what she wanted to do.
“I knew if there was a chance I could walk normally again, I’d take it. Brain surgery sounded drastic and scary, but I’d do anything to reclaim control of my body and have the freedom to move,” Emily said.
After the system was implanted and turned on, Emily saw dramatic improvement within 2 weeks. Within 4 weeks, she no longer needed her cane and could easily walk for miles, an activity she once thought was never possible.
For Emily, DBS has been life-changing to say the least. These days she rises each morning at 5:30 am and happily strides out into the Chicago weather—rain, snow or shine. “Honestly, it doesn’t matter if it’s 105 degrees out or 105 below zero—I do it,” she says. “My mom always says to me, ‘You’re crazy! It’s too cold outside—why are you doing this?’ I always tell her, ‘Because I can.’”
Click here to read page 1 of Emily's story...
Click here for PDF of entire article
Return to main Media Center page
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