Looking back, I realise I had my first cervical dystonia episode in the mid-1960’s, when I was in my early 20’s. At the time I interpreted it as a manifestation of anxiety. I was a registered psychiatric nurse, and although I could cope with being in charge of the whole female section of the hospital on night duty, reporting to the matron before knocking off each morning made me very anxious (I had suffered anxiety prior to this, during my training). I would feel my head turning to the side as I sat at her desk! Weird! It reminded me of something I’d been taught during my training, that a new-born baby has a rooting reflex, whereby its head turns to the side when its cheek is stroked! Luckily, when I completed my seven nights of night duty, it passed.
Next episode was about 34 years later, when I was 55, in 1999. I was working as a diversional therapist in an aged care facility, which sometimes involved having photos taken at functions, and I noticed my head seemed to droop down and to the side – as if I couldn’t hold it up properly. I thought it must be neck trouble, but as it happened, I was diagnosed with bowel cancer about the same time, so when I mentioned it to my doctor, he said “we’ll get the bowel cancer sorted out first, and deal with the neck problem later”. I now know this was unfortunate, as if it had been recognised as a neurological disorder, I could have been warned not to take Stemetil or Maxolon for nausea in the course of treatment, as they can have damaging neurological side effects in susceptible people, and there is apparently another nausea treatment which doesn’t. At the end of my six months of chemotherapy, my cancer specialist asked me if I had any discomfort, and I said I had severe neck pain.
She referred me to the physiotherapist at the cancer clinic, who gave me heaps of deep massage, which I now understand released the tightening-up I’d been unconsciously doing in response to the spasm (I wasn’t aware I had a spasm at the time), but the consequence was my head then lolled forward and to the side, more so than ever. Over the next few years, neck XRAYs and a head CT ruled out any significant deterioration in my neck. I was referred to an ENT specialist in the early 2,000s as I was complaining of dizziness and was found to have profound deafness just in the right ear. However, the ENT specialist denied that I had the dizziness I was complaining of!
Eventually, to my great good luck, my next step was a physiotherapist who must have learned about dystonia at university, as he advised me to ask my doctor for a referral to a neurologist, and I saw a neurologist following further scans to rule out other possibilities. By then it was March 2006. He referred me on to a movement disorder specialist, and I had two Botulinum toxin treatments, following which I’m afraid I concluded that for me, the condition is preferable to the treatment as I had lots of side effects! Or that treatment, anyway. Since then I’ve had several different physio interventions, by participating in research trials with both Melani Boyce at Westmead (Sydney) and Lynley Bradnam in Adelaide, both of whom have helped me greatly.
I was able to continue working part-time, but I found a six-hour day was my maximum, and a three-day week. Given those restrictions, I worked till I was 67. Being in an aged care facility, where so many people around me also had physical disabilities, probably helped, as did wheeling people around in their wheelchairs, whose handles functioned as a walking aid for me!
I am now very happily retired, my hobby is also my exercise – caring for a five acre bush block garden in the Blue Mountains west of Sydney. I only drive, slowly, on my local back streets, I almost always decline evening invitations (owing to fatigue), and I’m now thinking my dizzy attacks may be a form of motion sickness, and I’m avoiding long-distance travel by anything other than the train – and keeping my fingers and toes crossed that I can keep feeling comfortable on trains! I sometimes have difficulty swallowing, or bite my mouth, I have had problems with a spasm in my throat making me have to fight to breathe (hopefully that has passed now, as I haven’t had it for a while). Also I have cramps of the hands and feet, and in a spot in my midriff, but none of them are too troublesome for me. We are lucky enough to have a local dystonia support group, as well as the internet one, and I am so grateful for the understanding and support so generously shared by both these circles.
I do have some family history. I have several ancestors with symptoms recorded which might well be dystonia. My paternal grandfather’s cause of death at aged 57 was “Locomotor Ataxia” of 20 years duration, and a paternal uncle had tongue movements and hand-shakes, but having been on the battle field in World War I it was called shell shock. Also my maternal grandmother had difficulty swallowing, and that was an early symptom for me, so I may have got a genetic double-whammy! I think I was genetically-predisposed, and over the years had a series of triggers eventually leading to dystonia.