Support us Your stories Living with stories Andy's story Andy's wife, Mandy, has neck dystonia (cervical dystonia). Andy and Mandy are joint coordinators of the Berkshire Dystonia UK Support Group and Andy serves as a Trustee of Dystonia UK. Neck dystonia is characterised by continuous or intermittent muscle contractions which cause abnormal, often painful, repetitive movements of the neck and head. The movements can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis). It feels selfish somehow to share how I feel about dystonia and how it has affected my life, but here goes. I do not have dystonia, my wife Mandy does. She has cervical dystonia and whilst she has known this for many years it did take until her late twenties for her to discover why her head shook. Being told her shakes were ‘nervy’ movements did as little to reassure Mandy as it did me. I felt guilt as tiredness and anxiety clearly caused her head tremors to worsen, with young children and a husband with a busy workload keeping me away from home for endless working days I wondered - was I contributing? Prior to diagnosis Mandy saw a psychiatrist and therapists galore and when professionals comment on your state of mind again I questioned myself and whether I was giving Mandy the emotional support needed to fight this demon. Diagnosis was a huge relief. Dystonia, a gremlin existed, it wasn’t her. After learning that it can be hereditary, she noted that her father was also affected. Mandy unloaded the burden of not knowing and we shared the hope of botulinum injections as a treatment. Results from the injections were erratic as they wore off. Together we learnt that to a degree her symptoms could be managed by avoiding the superstore checkout at busy times, sitting in the back row at School events and the use of alcohol at occasional but diminishing social events. We had conflicting thoughts about the use of alcohol but as her consultant admitted it could be ‘the best option’ when used in moderation. As results from the botulinum toxin injections worsened, and she began to become a house bound mother, Mandy considered Deep Brain Stimulation (DBS). Pondering the gamble of a possible improvement with DBS against the risk of the operation was tough. I could see her deteriorating and as a partner I felt useless. I felt selfish wanting her to improve, as Mandy’s withdrawal from life was affecting our relationship, whilst also excited knowing that DBS could bring new life. Then I felt numb when accepting the risk of losing more or all of my best friend, wife and partner in life if the operation went wrong. After much soul-searching Mandy, with family support, applied for DBS only to be denied. Mandy felt deflated, feeling little hope for her future. I shared her disappointment with nowhere to go from there. Dystonia UK gave us the support to apply again. Thankfully this time Mandy was successful, having her DBS at Oxford in 2012. We arrived early evening to drop Mandy off ready for her morning procedure and ate at a local restaurant. I kissed her goodbye with a lump in my throat that only just allowed me to say ’it will all be OK’ and I drove home. The windscreen wipers failed to clear the water before my eyes that dark night. I thought to myself ‘what have I done?’ Visiting with my daughter, we found Mandy awake later the next afternoon smiling and relieved. We took regular trips to Oxford to ‘tweak’ the stimulator settings and with a 90% improvement Mandy’s life was lifted with mine. Partners live with dystonia too and I believe you are an invaluable source of strength and hope using empathy and compassion to express your love and support. In summary, we partners may feel pretty useless at times but you cannot measure the value of having someone at your side. Being there, saying it’s going to be OK and looking to the future can add hope to difficult times. Mandy now runs the Berkshire Dystonia UK Support Group whilst I am a Trustee; our way of saying thanks. Mandy supporting others living with dystonia, as well as other charity work, has enriched the community and made me so proud of her enduring strength.