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By Sheryl Jedlinski When Jean learned that the NIH screens people with Parkinson’s (PWP) to match them to appropriate clinical trials, she immediately applied. After all, she said, her Parkinson’s was slowly, but steadily progressing, and would not go away on its own. She would have only herself to blame if she didn’t opt to be part of the solution and participate in clinical trials. Looking back, Jeans says, her visit to the NIH Parkinson Center in Bethesda, MD, was everything she had hoped it would be. She saw a Movement Disorders Specialist (MDS) who confirmed that her current course of treatment was working well for her and found a suitable medical device study she plans to begin in October. How did Jean get the ball rolling?Jean first had to have her MDS send a letter confirming her Parkinson’s diagnosis, providing the results of her latest neurological tests, and listing her current medications and supplements. Jean then downloaded and completed detailed health background forms for submission. Once everything was in order, Jean was off to the NIH.The NIH made things as smooth and easy as possible, arranging shuttles to and from the airport, and to and from her hotel to their offices. Everything went according to the typed instructions she had been given before she left home. “Everyone was kind, helpful, knowledgeable and genuinely glad to have me there to work with,” Jean said. What did Jean do at the NIH?Jean first met with a nurse who took her vital statistics, gave her a complete physical exam, and drew blood for genetic testing. Next, she saw an MDS who did a complete neurological exam, went over the results with her, and made recommendations, including that she use a walking stick for increased stability. A few weeks after she returned home, both Jean and her regular MDS received copies of her evaluation.
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Who should contact the NIH?Any PWP may ask their health care provider to refer them to NIH/NINDS/Parkinson Disease Program. It's as easy as a phone call. You may want to go to:
The NIH/NINDS welcomes PWP of all ages, genders, and cultural backgrounds to participate in clinical research studies, and the NIH covers the cost of most travel methods and lodging. For general information and travel, contact:
For information about research studies related to PD:
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email us directly at: Sheryl@pdplan4life.com (c) 2015 PDPlan LLC All Rights Reserved Without express written consent, this material may only be used for your own personal and noncommercial uses which do not harm the reputation of PDPlan LLC, provided that you do not remove any copyright. To request permission to reproduce, please contact PDPlan LLC at Sheryl@pdplan4life.com |
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