The Pharmaceutical Journal
Vol 268 No 7184 p184
9 February 2002

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Cervical dystonia

Pharmacists, who are also patients, describe in their own words what it is like to have to take a medicine for life

Living with cervical dystonia: more compassion for others

Early in 1998, I realised that the pain and pulling to one side in my neck was getting so bad I would need to see a doctor. This had been getting progressively worse for the past three years. As I expected, the diagnosis was arthritis and physiotherapy was prescribed. The next few months became a nightmare of struggling with pain and work.

I think it was one morning in June of that year that my head started to shake uncontrollably, so this time a visit to my general practitioner resulted in an urgent appointment with a neurologist; the eventual diagnosis was cervical dystonia.

Eventually I got to the "Botox clinic", part of the movement disorder clinic at the hospital to which I had been referred. I had previously never met anyone with dystonia and knew little about the disorder. Four years on, I still have two monthly injections of botulinum toxin in my neck. Sometimes they work but mostly they don't, so it is just down to analgesics.

I reduced the number of days I worked and retired in December 1999. With advancing years, other conditions have added to the medication I need to take, so I feel well qualified to write on the subject of pharmacists as patients.

Some medication I do take properly and regularly, eg, Didronel. Others I abandon whenever I feel better. I simply will not take analgesics on a regular basis. I know in the end I have to give in and I do believe my GP is getting annoyed because I tend to see him as the last resort.

Able to counsel

I do wish I had less knowledge when it comes to myself. Perhaps then I could accept what I am told. However, I realise now that I have much more compassion towards others. I have, if somewhat reluctantly, become a local contact for a branch of the Dystonia Society and believe that at least I can help others. I have more patience to listen and, of course, I am more able to give reasoned counselling.

During bad spells, I long for someone to talk to, and that, I think, is one of the more rewarding parts of pharmacy, being accessible when needed.

At least I have seen both sides, but I would really love to be back in pharmacy.