My story began in 1991 whilst watching my son play basketball and coming to the realisation that I was very uncomfortable with the persistent stiffness and pain in my neck. I was also experiencing a twisting sensation in my neck along with a slight tremor, a head tilt to the right, stiffness and pain especially in the back of my head and neck. It was time to get some help.
I was working full time in a busy college administrative role and no amount of changes to my workplace environment made any difference to my neck problems. Driving a car, shopping and sitting at the computer was difficult. Any group gatherings I always made a beeline for the head of the table which meant I didn't have to turn my head. I could look straight ahead and talk to everybody.
I also found I was using various ways to keep my balance while walking eg. putting my hand up to my sunglasses and holding on to them while walking or pulling at a piece of my hair and holding my chin was another. I usually had my hands at the back of my head for support when sitting especially if the chair didn’t have some form of head rest. At this stage I was frustrated with people spotting my stiff neck because I was trying desperately to stay straight and normal.
I kept persevering in my quest to find somebody who could help me. A health practitioner told me that I had a head tilt and if I straightened up I wouldn't have the problem with my neck. If only it was that simple. Three years later in 1994 after a torturous journey visiting all manner of health practitioners I finally was directed to a neurologist who treated Movement Disorders. I was relieved to know what was troubling me but wasn't very impressed with the suggested treatment - Botulinum injected into the neck every three months.
Painful as the injections are one gets used to the trek to the neurologist four times a year and I’ve been trekking for a few years now and often wonder if I reach the age of 80 or 90 will I still be having Botox injections. I was also prescribed Rivotril (clonazepam) a mild sedative and anti epileptic drug, and have continued taking 1 mg daily. To maintain a better quality of life the two treatments ie Botulinum injections and clonazepam work for me.
In 1998, I underwent Selective Peripheral Denervation Surgery with a reasonably good result. Denervating some nerves at the back of my head/neck relieved me of some of the discomfort, the tremor and in particular the feeling that my head was too heavy for my body. The dystonia had been stable until about 18 months ago when I began to feel spasming around the eyes and in my eyelids and a change in my right arm/hand. A neurologist diagnosed blepharospasm and writer’s cramp and along with cervical dystonia I was informed that I had Cranial Dystonia ie more than one form of dystonia in the trunk/head area. The most difficulty I have is with the dystonia in the neck and eyes.
I would say that my experience with dystonia has been a rollercoaster ride. However, I believe I cope reasonably well with it. I pursue interests that are not easy to do and at times downright difficult but I am not willing to give them up and push myself to do them when I can. The handlebars on my bike are designed so that I am not straining my neck when riding. Pottering in the garden, craftwork, and reading (even though I have to prop a book up and my head quite often wobbles about when reading) I enjoy too. I always have a few projects on the go on my computer but find I can only spend time on them in short spurts. Sitting at the computer remains very uncomfortable for me but I’ll never give it up.
I have been helped tremendously along the way as an active member of the Victorian Spasmodic Torticollis Support group. I value the friendship, the opportunity to mix with fellow dystonia sufferers and to be supportive to them. From the group I have learnt that everyone is different. Some members of our group continue in the workforce while others find that impossible.
Finding the right balance is important in coping with dystonia and it is a daily challenge. I am content now with continuing the Botox injections, taking my little dose of Rivotril (clonazepam), using hot packs, resting when things get too tough. I have good and bad days but importantly I am enjoying life now even with my difficulties. Frustration, disbelief, anger, realisation, acceptance and finally contentment were the range of emotions I experienced during my journey with dystonia. The journey continues but I can now say that I’m OK with it.
Copyright ASTA Victoria 2015