Linda's Dystonia

Linda's story is almost unbelievable. It is both horrifying and inspirational. For the first few years of her life, she was a happy toddler. Her days were filled with trips to the playground and playtime with her siblings. And then one day fifty-five years ago everything changed.

Linda's whole body began to writhe with spasms. Her confused and terrified parents took her from doctor to doctor, each time receiving a different diagnosis: polio, muscular dystrophy, and cerebral palsy. Yet none of these illnesses could explain the painful contortions the little girl was experiencing. After years of unsuccessful treatment, doctors decided it was all in Linda's head. They claimed her condition was an extreme cry for attention caused by the stroke Linda's mother, Nancy, suffered during her birth. They believed that Linda was acting out because her mother had been unable to care for her for sometime. Linda was diagnosed with hysterical paralysis and sent to the state mental hospital.

By this time, her body was stiff as a board and riddled with constant muscular spasms[GB1]. Her throat convulsed and she could barely even let out a whisper. As part of her treatment, doctors placed Linda on one side of a room and put her food on the other. They thought that if she got hungry enough, she would get over her mental illness and be able to cure herself. She could barely move her arms. In the morning her she was able to crawl across the floor to food, but by evening her muscles were so spastic she could not move. Essentially, Linda was left alone to starve.
Fortunately, an astute nurse defied doctors' orders and snuck Linda food to keep her alive. The doctors had given up on Linda; she was expected to die of heart failure from the strain the spasms put on her heart. Now a young adult, Linda waited for a miracle from God. Thankfully, that miracle arrived in an unexpected fashion. Linda's mother Nancy was injured in a terrible car accident and had to see a neurologist for treatment. She began discussing her daughter's condition with her doctor, so he referred them to John's Hopkins for evaluation and treatment.
After two decades of suffering, Linda was finally given a diagnosis: a rare and crippling genetic disorder known as dystonia, a condition that occurs most often among people with Ashkenazi Jewish ancestry. No one had previously considered this diagnosis because Linda's family had hidden their Jewish background after fleeing Europe. The next year was a whirlwind of treatment: brain surgery, rehab and medication.
Throughout her life, Linda had been deprived of many things. At 20, she had never been to school, never gone on a date or had a job. But she emerged from the hospital determined to live her life to the fullest. She attended a dystonia conference, where she met her husband John, who also suffered from the disease. Linda got her GED and earned a bachelor's degree in biology, graduating with honors. She worked as a lab tech at a local hospital, and then went back to school for a master's degree in rehab counseling at the University of South Carolina.
Linda became a fierce advocate for the disabled. She knew what it was like to suffer, to be unable to navigate the world around you, and she dedicated herself to helping others become independent. She worked in assistive technology, evaluating peoples' homes, deciding what modifications would allow them to be independent and finding the funding to make those changes possible. Linda lent her voice to others who were suffering and took legal action against countless public places and business that were not wheelchair accessible. Drawing on a tremendous reserve of courage, humility and determination, Linda worked to help disabled individuals in her community by training service dogs and sharing her story to inspire others. She was active in her church and volunteered in public outreach and education.
In 2007, Linda's husband succumbed to his illness, and until now, she has carried on. Now her medication has stopped working and her condition is degenerating. The woman who once tirelessly advocated for justice for the disabled is losing all control of her muscles. Her arms fly out uncontrollably and her legs are wracked with spasms. She is in constant pain and can no longer care for herself. Her family is raising money to help fund her experimental treatments, which are not covered by her insurance, and for her daily care. Linda has spent her life overcoming obstacles that would bring most of us to our knees, but now she needs our help. Please consider helping us give back to a woman who has given so much to the community.

We are raising money for Linda because she can no longer work. Linda is currently unable to earn a living and she can't afford to pay for critical treatments her insurance does not cover or deem necessary. Firstly, her insurance will only pay for generic medication. Legally, generic labels are allowed to have a 25% discrepancy of the main ingredient. With her condition, she needs the name brand name medication - 100% of the main ingredient. The new medication Linda needs to take is $1,500.00 a month, $50.00 a day. Secondly, Linda now has to have 24/7 nursing care. Nursing care is $220 a day, $1,540 a week and $6,600.00 per month. Her insurance is not paying for this, she has to. Thirdly, Linda needs a genetic test and other procedures that is going to cost a minimum of $4,000.00 upwards to $10,000.00. There are also other experimental treatments being developed but Linda cannot afford travel expenses. Besides medical expenses, Linda's living expenses are approximately $2,500.00 a month, and her insurance expenses are $375.00 a month. This is monthly expenses of $10, 975.00 a month. She is quickly running out of savings to pay for this, that is why we are asking for your help. Thank you for reading this. If you cannot contribute, please pass this on to everyone you know.

Here are some links to stories written about Linda:
http://breatheagainmagazine.org/dont-give-up-dont-quit/
http://fridawrites.blogspot.com/2008/05/can-we-give-you-award-linda-van-deusen.html
http://www.adasoutheast.org/news/articles.php?id=5490
http://lexingtonchronicle.com/a-costly-oversight-on-wheelchair-access-p11483.htm
http://caselaw.findlaw.com/nj-superior-court-appellate-division/1600884.html
Here are some links to better understand Dystonia.
http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php
http://www.mayoclinic.com/health/dystonia/DS00684
http://www.ninds.nih.gov/disorders/dystonias/detail_dystonias.htm
http://www.medicinenet.com/dystonia/article.htm
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Organizer

Linda Columbia 
Organizer
Columbia, SC
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