Meet Jade Willshaw, the co-founder of "Twisted Talk", based in Montreal. Here is a transcript of a sit-down we had with her in 2019, where she shares her thoughts on living with Dystonia.
DMRF: Hi Jade! Thanks for sitting down with us to tell us a little bit about your dystonia story. First off - how long did it take you to get your dystonia diagnosis?
JW: It took several years before I knew what dystonia was. Because I have secondary dystonia from a stroke that happened early on in my life, the dystonic symptoms were an unknown movement disorder.
DMRF: What was your first thought after you were diagnosed?
JW: It was interesting to finally define and name my spasticity as dystonia. I thought, what is this dystonia? How many other people does it affect?
DMRF: What has made you decide to get involved with DMRF Canada as a volunteer Support Group Leader?
JW: I have always been an advocate for helping others and wanted to be involved in the dystonia community. I wanted to connect others together so they could share a mutual conversation about living with dystonia. Since there was a lack of support for English-speaking patients in the Montreal community, I decided to take on the role of Co-Leader, along with Yann Rondeau, and together we created “Twisted Talk”. Yann and I are working on creating a cohesive group that instills comradery, acceptance, and support. It is still in the early stages, but we have high hopes for hosting guest speakers to talk on managing and living well with dystonia in the near future.
DMRF: If you could describe dystonia in one word, what would it be?
JW: Resilience. Dystonia is a daily challenge and brings awareness to the perspective of life's true significance.
DMRF: What has your dystonia taught you?
JW: Patience, acceptance, and empathy. I am patient with myself and respect my own limits, especially in the fast-paced world we live in. I find myself 'dancing to my own tune'.
DMRF: If you could give others out there one piece of advice, what would it be?
JW: Have patience with yourself and respect your body. Accept and love your dystonia. It does not define who you are, but it is non the less a part of you.