#EscapeDystonia Awareness Campaign

I am Catalina and I have had cervical dystonia for 10 years. I had a period of isolation in which I felt useless and I was ashamed to interact with others because of my body position. I always wanted to study the arts but I didn’t succeed, so I found an opportune reason to leave the house to study the arts and I enrolled in a painting school. Since then my life has changed, painting has become a profession but also a therapy. I also organize painting courses for children and teens to raise money for our association in Romania. In painting I find myself and I express my deepest emotions through techniques and colors, I completely forget about dystonia, painting is my island where I can escape, that’s where I feel free, healthy and full of joy.

I am Gall Sabina from Romania I like swimming a lot and hydroterapy helps me to escape dystonia.

I am Sabina Gall from Romania. Painting makes me feel good It relaxes me a lot and it helps me to escape dystonia.

I am Sabina Gall from Romania I enjoy riding a horse because I gain confidence în myself and it helps me to escape dystonia.

Hello! My name is Tina and I have been diagnosed with oromandibular dystonia for over a year now. It has been life changing but I have gotten so far thanks to the support of my family, friends and your wonderful page. It has helped me a lot in the past months so Thankyou!! Here is my #escapedystonia picture. Music and my cat make everything better! 💛

I am Adam and I have cervical dystonia. After several years of living with the disease, my symptoms worsened. I became less active and spent a lot of time lying down. It was the best way to get my head to stop moving and ease the pain. I limited social relations and stayed at home most of the time. It only made my pain worse. I decided to gradually start moving more. I tried yoga for the first time. My poses weren’t perfect, but I didn’t give up. After a while, it turned out that I had less pain and had a greater range of motion. Now I’m sure that right exercise helps feel better not only physically but also mentally, in life with cervical dystonia. This is my way to #escapedystonia What is yours?

I am Edwige and I have myoclonus cervical dystonia, I was diagnosed 30 years ago. I have always worked full time, and for the last year I have worked from home because of the pandemic. I’m also fully dedicated to my volunteer work which has become my hobby. It brings me social relationships, motivating projects and knowledge… I escape dystonia working while taking care of our members and of the management of our organizations, and I can tell you that it is a second full time job! When I concentrate on my screens, I forget my tremors or movement disorders. You can see me on the picture in front of my computers, that I call my ”control tower” 😊 This is my activity to #escapedystonia. I expect to read yours soon!

I am Gill and have had dystonia for around 15 years. Before Dystonia struck I had very few hobbies as I just never had time to dedicate to a hobby. Having dystonia forced me to slow down the pace of my life and I found I had spare time to take up some hobbies. I have always been able to knit, my Mother taught me when I was very young, so took up kitting again and that is now my main hobby which I love, my grandchildren will never run out of cardigans and jumpers! All the time I am knitting my head does not shake and my jaw only spasms occasionally! I also design and draw my own greetings cards and design and make jewellery with sterling silver. I enjoy all my hobbies but honestly……….the best thing about them is that they ‘control’ my dystonia.

I am Monika and I have cervical dystonia. Since I was very young I have loved to do crafts such as embroidery, crochet and to knit. When I was first diagnosed I felt I could not do these activities any longer because of my neck twisting. But then I discovered that sitting in a good chair and with the support of a pillow I could do these activities. I soon discovered that my head and neck also felt a lot better. So definitely to knit or to do embroidery help me to #escapedystonia! What do you do?

I am Sissel from Norway. I have cervical Dystonia. All my life I have had a dog. Now I have a puppy named Alfred. To take care of a dog means you have to get out of bed in the morning, and keep your daily routine, even if you have a bad day. He keeps me active. He is my best friend. To take care of him makes me happy. He is the reason why I live well with my Dystonia.

I have Essential Tremor which is a movement disorder that causes my hands and neck to shake and I find foto tours in nature very relaxing and helpful. I think that concentrating and trying to capture a certain picture, a beautiful moment, has a biofeedback quality. I have to try to hold my hands as still as possible in order to achieve my goal. Heartbeat slows as I live only in this one moment, and muscles relax. Happiness helps to release helpful chemicals in my body. Looking at those pictures and getting positive feedback repeats and strengthens these effects. I can really recommend this. My camera does more for me than any pill I tried.

I have Essential Tremor which is a movement disorder that causes my hands and neck to shake and I find foto tours in nature very relaxing and helpful. I think that concentrating and trying to capture a certain picture, a beautiful moment, has a biofeedback quality. I have to try to hold my hands as still as possible in order to achieve my goal. Heartbeat slows as I live only in this one moment, and muscles relax. Happiness helps to release helpful chemicals in my body. Looking at those pictures and getting positive feedback repeats and strengthens these effects. I can really recommend this. My camera does more for me than any pill I tried.

I have Essential Tremor which is a movement disorder that causes my hands and neck to shake and I find foto tours in nature very relaxing and helpful. I think that concentrating and trying to capture a certain picture, a beautiful moment, has a biofeedback quality. I have to try to hold my hands as still as possible in order to achieve my goal. Heartbeat slows as I live only in this one moment, and muscles relax. Happiness helps to release helpful chemicals in my body. Looking at those pictures and getting positive feedback repeats and strengthens these effects. I can really recommend this. My camera does more for me than any pill I tried.

Therapies are and will always be part of the life of Antonia. That’s why I thought these should be pleasant so that she doesn’t get bored, wants them and looks forward to them if possible. Hypotherapy (horse therapy) is one of these therapies that brings him so much joy. He loves the horses very much and about the therapists who are with him, he says that ′′ they are so cute “. For her it is more than a therapy, it is one of the ways in which she develops and learns to live with dystonia.

Therapies are and will always be part of the life of Antonia. That’s why I thought these should be pleasant so that she doesn’t get bored, wants them and looks forward to them if possible. Hypotherapy (horse therapy) is one of these therapies that brings him so much joy. He loves the horses very much and about the therapists who are with him, he says that ′′ they are so cute “. For her it is more than a therapy, it is one of the ways in which she develops and learns to live with dystonia.

The passion of horses to live well.

Brigitte, nature and music, harmony to get away from it all.

Dystonie Amadys

The dance and the movement have followed me through the years in different ways. As a shy teenager, I always felt more comfortable on the dance floor than with the social game. To be able to let go in disco dancing felt great! Just body and feeling. The vibrations of the music that propagated in the movements of the body, the impulses that were allowed to be expressed, without being censored by the thoughts.