Living Well with Dystonia by Truong Daniel;

Author:Truong, Daniel;
Language: eng
Format: epub
Publisher: Springer Publishing Company, Incorporated
Published: 2016-03-01T09:30:00+00:00

PATIENT PERSPECTIVE

Just before undergoing that surgery, we went for a last appointment to finalize preparations. As Kris and I were sitting in the reception room waiting to be seen, a man came out of one of the examination rooms. He could barely walk; his poor body was curled from the effects of dystonia. I looked at my daughter and said, “You know, even though you have the problems you do, it can always be worse.” She looked at me and agreed.

DBS has opened a whole new world for Kris. When she first received the benefits of DBS she was like a little girl. She could write normally for the first time in years. She would sign her name over and over trying to decide which way she liked best. She could shave her legs pain free, no nicks and cuts. She could eat with chopsticks. There are a million little things she can do now that we all take for granted. So at 34 years of age, Kris is starting a new phase in her life.

There are a few inconveniences she has to endure. The battery for the DBS system doesn’t last very long. She has to undergo outpatient surgery every 13 to 15 months to replace the unit. She has to be sure to catch the timing right because if the battery dies before it’s replaced, her symptoms come back tenfold. For air travel, she has to go through a separate security line because she can’t walk through the regular electronic system. There is a bulge under her skin on the right side of her chest. It looks exactly like a cell phone stuck just below the skin. At first she was very self-conscious about the scar and the bulge, but now she just accepts it being there. To me, it’s like a badge of honor. It stands for all the trials and tribulations she has gone through and will go through until they find some other means to handle her dystonia. It has now been six years since she got her life back. For us, this is like a second life.

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