Parkinson's disease - more than just movement
Billy Connolly's announcement that he has been diagnosed with Parkinson's disease as well as prostate cancer has thrust both conditions into the headlines again. About 35,000 men a year in the UK are diagnosed with prostate cancer, but controversy still rages over screening.
Parkinson's disease affects about one in 200 Britons in their 60s and one in 25 who reach their 80s. Like prostate cancer, Parkinson's disease gets more common with increasing age - the average age at diagnosis of prostate cancer is 70-74. Like prostate cancer, it is, much less commonly, diagnosed in younger people (Michael J Fox is a well-known sufferer, who was diagnosed at the age of 30). And like prostate cancer, there is often a genetic link with the disease for patients diagnosed at a young age.
But what does a diagnosis of Parkinson's disease mean to Billy Connolly, and to the 127,000 other sufferers in the UK? The classical triad of symptoms includes stiffness, tremor and slowness of movement. Tremor tends to be worse at rest, or in times of anxiety or high emotion. Problems with moving often make it hard to 'get going' but may be less noticeable at first once you're up and about. Billy Connolly's trademark broad grin may be a little less wide as his facial expressions are affected, and his quick-fire wit every bit as sharp but a tad slower off the mark. Stiffness can make everyday tasks like dressing difficult.
Many patients with Parkinson's have fairly mild symptoms to begin with, and may not need drug treatment when they're first diagnosed. There are several effective drug treatments for Parkinson's, but the most commonly-used medications can become less effective within a few years. They can also cause side effects including uncontrollable jerky movements, as well as compulsive or reckless behaviour including obsessive shopping or addiction to gambling. These problems are uncommon, but can be deeply distressing and are more likely to affect men diagnosed at a young age, smokers and single people who live alone.
Parkinson's can affect every aspect of life, not just for the sufferer but for their family. Anxiety and depression are more common among people with Parkinson's than in the general population, and about half of people with Parkinson's develop dementia at some point, compared with about one in 20 over-65s and one in five over-80s.
There's good news and bad about the services available, highlighted by an audit by Parkinson's UK of over 6,000 patients.
- Two thirds of newly-diagnosed patients are seen by a specialist within six weeks (or, put another way, one third of patients wait longer than six weeks after their diagnosis for their first specialist contact)
- 61% of newly-diagnosed sufferers get written information about the condition, while 39% don't
- It's now recognised that patients with Parkinson's disease need input from a wide-ranging healthcare team,including occupational therapists,physiotherapy and speech and language therapy
- Speech and language therapists can help with much more than just speech - they often form an integral part of the specialised neurology team, treating people with swallowing or choking difficulties. But even when these team members are part of a dedicated neurology service, they don't always get training in dealing with the special challenges facing people with Parkinson's disease
- Patients on drugs which can cause impulsive or compulsive behaviour are not being adequately monitored for symptoms.
So is Parkinson's a death sentence? Categorically not - many people with Parkinson's lead full and active lives. Is it a 'life sentence'? Yes, inasmuch as it can't be cured and the symptoms usually get worse over time. But a close friend of mine who has Parkinson's is still the wittiest, sharpest and most contented man I know. As a hugely talented and successful comedy writer, he has a lot to lose. But with his permission, I share with you his musings on how it will affect his life expectancy:
"My neurologist was disarmingly frank about death when I last visited him. I asked about life expectancy relating to Parkinson's (to do with my pension choices) and he said: "Well we used to think Parkinson's did affect life expectancy" (oh dear I thought). "Then about five years ago we came to the conclusion it didn't" (hurrah!!!!!!!!). "But now we think it shortens it by about four to five years" (Blast! Oh well, thanks for that)".
Our friend delights in the improvement in his performance at the party card game 'Cheat' now that his facial expressions have become harder to read. That's what I call not letting a diagnosis grind you down.