The Pharmaceutical Journal
Vol 268 No 7192 p475
6 April 2002

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Living with Parkinson's disease: a trade-off between mobility and falling

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

Living with Parkinson's disease: a trade-off between mobility and falling

My experience with Parkinson's disease began over 20 years ago when I was 41 and approaching the peak of my career in one of the best known teaching hospitals in the world. I was finding it difficult to stir a cup of tea with my right hand and my secretary was making comments about the size and illegibility of my handwriting. I did not connect these two clues at the time but, as both became worse, I eventually went to see the occupational health consultant. She was vaguely reassuring and referred me to a neurologist, who duly diagnosed Parkinson's disease.

The neurologist was not an enthusiastic interventionist and proposed that I should monitor the situation and take no medication until we both believed it necessary. We met regularly and it was only after two years had passed that we agreed it was time to consider drug treatment. I started on orphenadrine and over a further two years we gradually increased the dose to 100mg three times a day. At that dose, the anticholinergic side effects became unacceptable and we reduced the dose to 50mg twice a day, at which level it has remained. We tried amantadine 100mg twice a day, which helped for about six weeks, and only then turned to levodopa, with the addition of selegiline after a further five years. I am glad to say that we resisted the instinct to abandon the selegiline when there were reports, later to be refuted, of premature deaths associated with its use.

I have been pleased to find that levodopa in a number of formulations has remained effective for more than 15 years and that I have been able to avoid other drugs thus far. I have developed a fairly acute awareness of my dopamine levels and usually manage to avoid the peaks and troughs and hence the worst of the side effects. I find that I can predict with uncanny accuracy the "on" and "off" switches associated with levodopa therapy. In managing my medication I have come to realise that there is a trade-off between being sufficiently mobile to live a fairly normal life on a total daily dose of 750mg levodopa and being able to avoid falling, which becomes more of a problem at doses above 700mg. I have found the worst of the problems associated with my condition to be falling, which is both painful and embarrassing. I am also much more sympathetic with patients who forget to take their drugs at the prescribed time.

I have not been tempted to undergo neurosurgery or cell transplants and I doubt whether stem cell research will lead to a more acceptable form of intervention in my lifetime. There will probably come a time when I need to move on to dopamine agonist or catechol o-methyl transferase inhibitor therapy, but I shall resist for as long as I am able.

I took the opportunity of a trust merger some years ago to retire early, which meant as well as a change of consultant I have been visiting a local branch of a well-known chain of pharmacies. I have not been greatly impressed by the quality of service (they never seem to be able to dispense the full prescription) or the attitude of some of the younger locum staff. (I once had to haul the pharmacist out of the adjoining video shop because there were several patients waiting to collect their prescriptions and the assistant correctly would not issue then in his absence. I wrote to the superintendent pharmacist about that one.)

As with many conditions there is more to the treatment of Parkinson's disease than drug therapy. I was fortunate to be referred to a physiotherapist who had researched the problem of falling, and she gave me sound advice and a programme of exercises.

The love and support of my wife and family and our Christian friends have been central to my acceptance of the limitations imposed by my condition, and the innocent questions and comments from my grandchildren ("why is your head wobbly, Grandad?" and "my go-cart can race your buggy") somehow help me keep things in perspective.

More difficult is explaining what it is like to have an incurable illness, and answering the question as to why it happened to me. Here the only answer is to be found in my Christian faith.