Intro and Survey 1 - Lived Experience With Dystonia
Welcome to My Survey
This series of questionnaires was developed to help understand the condition of dystonia,
It is done in the belief that the patient is one of the experts about their own medical condition. Since doctors and researchers depend partly on what input we give them
we have a privilege and an opportunity to help them help us.
We can tell them how it is for us.
This is a group of 28 surveys to be done at your convenience, as many or as few as you feel appropriate to your situation. There is a short short survey for those in a hurry.
There are also detailed surveys that try to nail down specific symptoms and experiences, both those that patients have wondered about and ones researchers have wondered about.
ANY help you can give, answering any of the questions, is useful. You can also skip questions as you wish.
For those wishing to do several of the surveys it is suggested that you spread answering over several sessions so you do not tax and exhaust yourself. You can pause and save and come back another day.
These questionnaires are designed to protect privacy. They have no commercial involvement, cost or remuneration. They were written by a patient for fellow patients.
There are four desired outcomes:
1. Light on! Aha! moment for researchers - Let's study that.
2. Eureka! Someone knows what I’m going through - for patients
3. Wow ! I had no idea what it was like for you - for the public
3. Dig in, discover! useful question ideas for doctors
Of course the ultimate goal is that we will
Wipe it out
This questionnaire series is not intended to provide instruction. It is not a diagnostic survey. It is intended for those who already have been told by a medical doctor that they have dystonia.
Readers and users should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from this survey.. If you have any health care questions, please consult your medical practitioner.
The questions for this questionnaire series were created based on situations described by patients or researchers over a wide range of types of dystonia. No person has all types of dystonia so some questions will not apply to any given patient.
The questions are not intended to capture the future, only to ask about the present and the past. The questions may ask about symptoms that are not likely dystonia, to look at situations that make the condition harder to understand.
The questionnaire has no commercial interest, recommends no purchase, product or service and makes no endorsements.
There is no cost to filling out the questionnaire and no reimbursement for having done so.
The identity of those filling out the survey is not sought except in general terms of categories and those questions are optional. Responses will be compiled in aggregate and not be stored in connection with any names. .Names will not be collected for this survey..
If you have suggestions or feedback about questions on this survey please contact the survey designer.
For more information about the survey please use the web link.