The surveys were online May 4, 2020 to May 4, 2021. The website was seen in 83 countries, had over 14,000 page views and over 5.000 individual views. There were 48 short optional surveys, 1344 questions in total, and over half were checklist so in the end over 3,500 questions were asked.
The site continued to attract visitors while results were being analyzed. The site had now been seen in 88 countries, had 17.767 page views and 6.296 individual views.
The report analyzing the results and full copies of the results were posted online August 30, 2021. Since then in the first 3 weeks, researchers and support groups, chronic illness and pain associations have been informed . The website has now had 19,705 views, 7,221 individual views and the entire 622 page report has been downloaded 87 times. This means researchers are hearing patients and we pass the torch over to them.
1868 anonymous surveys were completed. The questions were designed based on clinical studies, patient biographies and patient questions about their own condition. Analysis was done through Survey Monkey which provided per cents of responses. For each theme a summary was given of past research, areas of useful inquiry were summarized, the per question results were presented and then a preliminary analysis was done. Patients may find it interesting to see how much their own experience parallels that of others.
The results are presented in several formats:
a. There are two summary articles under 3,000 words each. One is about the motor aspects of dystonia and the other is about the nonmotor aspects.
b. Those who wish to study only certain themes can look at 45 individual files on the site. For specific topics an index is provided or it may be useful to just search for a given word and find all responses on that topic.
c. The full study has been put up on the website in pdf form for download.
For this project, patients stepped up to help answer some of the questions researchers have wondered about in clinical studies, to save clinics time and money and to provide a database for future avenues of research. No medical advice was given and there was no commercial involvement or promotion of any product or service.
Thank you to everyone who took part, to those who thought it a good idea and to those who helped spread the word of the project.
It may not be a pivotal moment in history but those of us with dystonia, this represents a real effort to do what we can to advance understanding of our condition.
I am proud of everyone who took part. The next step is the hope that a few very smart people look closely at the data, see what we patients on our own cannot see and understand what we do not. So thank you to those researchers.
This is a personal website and will not be up indefinitely. If there is anything on the website you find useful, feel free to download it.
The Canadian Medical Association Journal has now published a patient’s blog about the project.
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As of November 2023, the entire 622 page pdf of the research study has been downloaded 303 times. The site continues to attract visitors and is updated frequently as new research is announced globally. There have been significant breakthroughs in genetic studies and in MRI evidence.
The site is updated regularly, particularly about ways to cope and humor from patients as they endure the condition and have ‘attitude ‘ facing frustrations. It is a joyous little site and has had much praise. The role models mentionned on the site continue to inspire others. Researchers have also praised the timeline of the history of dystonia and some use it now in their instruction.
There are many people to thank as this site continues to attract visitors. Thank you to all who took part in the surveys, and for the incredible effort many put in to wade through the questions.
Thank you to all those who care about and study the results.
Thank you to all those who spread the word about this condition and this website. We can cheer each other up by information. We can tell our family doctors and lab techs and nurses about the website as a useful reference so they now have heard of the condition in more detail.
As we share what it is like for us we will feel a great strength of community.
And as we tell others, a few out there, researchers, will have aha moments of what can explain it, and will one day cure it.
Lived Experience With Dystonia 