June 5, 2019

Meet MyDystonia Ambassador Gill from the UK

Can you introduce yourself briefly?
My name is Gill Ainsley and I am a 58 year old mother of two sons and grandmother of two granddaughters. I live in the north east of England with my husband of almost 40 years, John.


Tell me about your work experience and how it relates to your work as MyDystonia ambassador.
My profession is engineering and I worked for many years as an Electromagnetic Compatability Test Engineer on military aircraft. These days I am retired from paid work but do voluntary work for a dystonia charity close to my home called Action for Dystonia, Diagnosis, Education and Research (A.D.D.E.R.). As an engineer I learned to question everything and accept nothing without evidence, I also learned how to work efficiently to time scales and tight budgets. Another skill learned was that of listening carefully to customer requirements and questions. Some of these skills are useful as Ambassador for the MyDystonia app particularly working to time scales and listening carefully. I find that answering users’questions as thoroughly and  quickly as possible keeps the user engaged and encourages them to keep using the app.

Why do you like helping others?
When I was first diagnosed with dystonia approximately 14 years ago, I felt lost and alone. I couldn’t find much information about dystonia and didn’t know which web sites and/or organisations I could trust. By being an ambassador for the MyDystonia app I feel I am helping to provide a reliable resource for patients to use to communicate with their consultant. My volunteer work with A.D.D.E.R. enables me to provide reliable information and resources to dystonia patients and particularly to those newly diagnosed.

What are the benefits for yourself from working as an MyDystonia ambassador?
Working as an app ambassador I have met other dystonia patients who are trying their best to make a difference to all dystonia patients. Not only have I made some lovely new friends but have been inspired by the work ethics of the other ambassadors. We also exchange views and advice which we can take back to our ‘individual’ charities to the benefit of our charities’ members.

How do you like spend your free time?
Between doing my voluntary work, caring for my elderly mother and aunt, and helping to look after our two granddaughters I don’t have a great deal of spare time. I do enjoy socialising with family and friends and I also enjoy doing several handicrafts such as knitting, sewing, making greetings cards and silversmithing where I make silver jewellery. All my handicraft hobbies help to keep my dystonia under control too!

What keeps you motivated on the tough days?
The times when my botulinum toxin injections have either worn off or not worked too well are difficult. The pain can be hard to cope with and the constant head shaking and jaw clenching can be embarrassing. I do have a wonderful support network in my family and friends but particularly my husband. He is the one to remind me that sometimes I need to rest and that it is ok to have a bad day and to treat each day as a new start.

What makes you angry?
Injustice makes me angry as does intolerance. In relation to my dystonia what angers me is people who show me pity. I do not want or need pity, just understanding and acceptance of the way I am.