The survey designer is a patient with cervical dystonia, with some involvement of the face and jaw. I have no medical training. However I am a school teacher by profession. I like to make lists and be organized – hence the questionnaires.
But even a good idea needs help. I watched the researchers at the conferences and meetings I’ve attended and I’ve seen their warmth and caring. I’ve read it, between the lines in the clinical studies. They really do want to help us and seem frustrated themselves, when they hit roadblocks to understanding.
The website and surveys are based on experiences I’ve read about from hundreds of patients and in research studies. The format is adjusted based on suggestions of fellow patients in a small international UK, US, Canada, Israel online focus group. There has been so much willingness to help.
I love already the writers, the blogger from the UK, the very prominent naval officer who drove across the city to bring me a binder of a few more research studies. We stood on the lawn, covid-distancing, and it warmed my heart to watch her in the light rain, watching her ignoring the rain. It’s her attitude.
The questionnaire structure that cleverly enters responses into a database immediately for statistical analysis is not mine. It is only possible because some tech wizard, way smarter than I am, designed the platform.
But even with all this help, the project only got off the ground because of technical help from my savvy kids who held my hand, dried my tears and did their magic when yet another computer oddity confronted me. Having the support of my family anchors me.
When I meet people with dystonia, I observe its many variations with awe. I notice how people face this unexpected road they have to travel. It seems patients are usually perplexed, even scared at first, and then something else happens – courage. Those who have had it way longer than I have are people that if the building exploded around them would still figure a way out. They are people you’d trust in a hurricane. I think it’s because their world is already exploding in little brushfires, daily. I want to help them. – hence the project.
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