A Disease of our Time
Hats off to Terry Pratchett: a few months back he was diagnosed with Alzheimer’s disease and he thought – ‘who shall I tell?’ Then he decided to tell every one and is doing two programmes on BBC2. A novelist, who has sold 60 million books, he has already donated a million dollars to further research. He is 59 and says he didn’t expect to spend his 60th year like this. His wife and daughter decide not to take part in the programme but Terry has a man Friday – Rob – a PA who types for him and is with him ’every step of the way.’
When Terry was first diagnosed he was bewildered and angry and his rage has helped him to fight the disease. There are variations of Alzheimer’s and Terry had PCA - Posterior Cortical Atrophy which affects his sight. Although an optician would find nothing wrong with his eyes the brain doesn’t send the right message to the eyes so that the patient misses letters and lines.
Throughout the programme we see him doing hours of book signing and visiting research laboratories and the only clear sign that something is amiss is when he has great difficulty putting on a tie (a fellow sufferer who he meets later in the programme suggests he does it by feel rather than sight), and when he is guest of honour at a convention celebrating his books, he stumbles when reading aloud on stage. He says ‘a shadow keeps falling on the book.’ and finally has to stop – which is quite heart rending.
Talking to a specialist he is told that ‘something approaching a cure is on the horizon.’ Many new drugs are going through clinical trials and scientists have found a way to give fruit flies Alzheimer’s and to cure them. The specialist said that the disease was a stripping away of humanity and was a living bereavement for all the family. I can attest to this; over twenty years ago our family was shattered when my brother – in his early fifties, was told he probably had Alzheimer’s. In those days they couldn’t make a definite diagnosis until after death. Now they say a patient probably has the disease ten years before it is recognised.
Terry is eager to try anything to help fight the disease and tries out what he calls a ‘loony helmet’ – a Heath- Robinson contraption which is meant to stimulate the brain cells. It is very uncomfortable to wear so a staunch friend – Frank Bernard, makes a cast of his skull so that a more comfortable one can be made. He also has his amalgam fillings removed. Frank described the disease as ‘a black nemesis that stalks you and said he would be with Terry to the end when ‘Rob and I would take a trip with Terry.’
When Terry goes to meet more advanced Alzheimer patients he feels at home; they know exactly what he is talking about when he describes his brain as having a Clapham Junction day.
The programme ends when Terry hears of good results from alternative treatments in
Living with Alzheimer’s is on Wednesday BBC2