Our monthly Zoom chats are warm, friendly, supportive and educational
Here are some raw, honest and inspiring quotes from our members

About exercise, interests & wellbeing

“I think mental stimulation is important” John QLD
“I have to exercise in the morning, otherwise I feel like it gets on top of me, better for my confidence” Karen NSW
“I religiously do my stretching exercises and it keeps my neck better” Denise NSW
“Music is very important to me…If I do those things I feel really good, like a normal human being” Anne QLD
“Activity is the only solution I have found… the less I do, the stiffer I get, maybe it is about the blood flow” John QLD
“Step aerobics – so much fun” Bel NSW
“You’ll never regret going for a swim” Karen VIC
“I don’t always like going to the gym, but I feel so much better after” Laraine NSW
“Put on a song and dance to it” Bel NSW

About living with the symptoms of dystonia

“I can’t get a credit card out of my wallet, my hands are ‘ooowee’” Hilary NSW
“Tap your phone, have cards on your phone wallet” Karen Vic
“I relate to what you are saying, it is like you are telling yourself, ‘you’re under control’ but it is ‘no you’re not lady’” Barbara WA
“It is like you have a little evil person on your shoulder” Bel NSW
“’This is what it is’ was such a relief” Robina VIC
“I get frustrated when I try to put eye make up on because my head shakes” Denise NSW
“It’s frustrating because you were a person that did this thing…now you can’t” Hilary NSW
“I’m conscious to keep my environment calm” Bel NSW

On stigma and dystonia

“At the very beginning I did have comments. Now if I am comfortable that is the most important thing” Anne QLD
“Unseen symptom is fatigue. I need to go and have a rest… I want my condition to behave itself and get in the back seat!” John QLD
“My six year old grandchild says ‘come on nan, I’ll look after you’” Robyn NSW
“I belong to Rotary and I go to meetings fortnightly. I make a point of letting people know ‘its not personal, it’s my neck’ …I’ve been able to talk about it most times” Barbara WA
“I was open with people. Trying to hide it makes it worse” Robyn NSW
“Waiting for a bus at age 75 (with a tremor) does not make me nervous” Juliette NSW

About mental health and dystonia

“Do you get anxious…. is that part of this (Dystonia) condition?” Karen VIC
“What you are saying is really important… anxiety & depression are multifaceted” Laraine NSW
“What about love and care?” Karen VIC
“I stand next to the horses. I brush them when I’m not anxious“ Karen VIC
“The thing about animals… my blood pressure goes down when my dog is sitting beside me” Denise NSW
“It is very helpful to feel legitimate” Trish VIC
“Got me to do visualisation stuff which helps a lot” Laraine NSW
“Frame of mind for me is one thing I can control a bit. I do everything I can to stay calm. I am who I am… keep away from things or people that make me upset. I’ve got used to the new me” Karen VIC

Updated 15 June 2026