‘Can’t hold my head up!’

SQUILL’S DYSTONIA STORY – ‘I COULDN’T HOLD MY HEAD UP!’

Back in the 1990s, working in a nursing home, I often had to pose for photos – it was part of the job of “putting on a show”, as a Diversional Therapist. I discovered I had a rather strange problem – I couldn’t hold my head up! There was also pain in the neck, fatigue, difficulty swallowing, funny phenomena around biting odd bits of the inside of my mouth, and occasional dizziness, but I would have put those down to being in my 50s, without the head-lolling. I spoke to my doc about it all, and had various investigations over the next six or so years, with nothing showing up to explain my increasingly disabling troubles. 

Eventually I asked for a referral to a physio, as I worked out for myself that may help. Which it did, but not in the way I’d expected. The exercises the physio gave me led to the neck pain escalating severely. The physio said “that’s not right! Ask your doc for a referral to a neurologist.” I am forever grateful to have landed up with a young physio, who, though he didn’t tell me I had dystonia, must have learned about it at uni, and knew to advise me on how to proceed. I am also grateful that the neurologist I then reached picked it, which I’ve discovered in my support group isn’t always the case. And I’m the only person with dystonia my GP has ever come across.

It turns out that what I thought to be my head “lolling” was actually a spasm of a whole lot of muscles in my neck, triggered by a glitch in a certain part of the brain which I won’t try to name… with an “unknown cause”, though prior to the diagnosis of my trouble I had had alot of anti-nausea medication while enduring chemotherapy for bowel cancer, and the fine print on the anti-nausea medication leaflet does mention that a rare side-effect of its use can be dystonia… I already had some symptoms before that though. I think I was genetically-predisposed, and over the years had a series of triggers eventually leading to it.

The treatment I was offered was injections of Botox into the spasming neck muscles. Like the curate’s egg, it was “good in parts”, the pain was relieved wonderfully, but for me, after two treatments, I concluded the resulting discomforts outweighed the benefits. I’m hesitant to say that, as I would want to encourage others to give treatment a go – I know many people whose lives are greatly enhanced by treatment. My help comes firstly from being in two support groups – a local one, where I meet with others with dystonia (of various parts of the body, not always the neck) in person, the other an Australia-wide facebook support group. And secondly, from participating in research projects for dystonia – being a guinea pig doesn’t only help unknown others in the future, I have felt genuine benefit myself from various interventions being trialled.

Girl Holding PlantI am now very proud to have attained three-score-years-and-ten (meaning I’ve turned 70), and I’m happily-retired. For the last few working years, I could no longer drive to work, the “head-lolling” having progressed to a very strong “pulling-to-the-side”, which made it very hard to be behind the wheel, and the pain and fatigue meant I could only manage three five-hour days per week. Now I occupy myself mainly working outdoors in my bush garden, interspersed with frequent rests – luckily I’m an avid reader!

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