Parkinson's is reported to be the world’s fastest-growing neurological condition. Photo / 123RF
Fraught with emotion when she received her diagnosis, here’s how one writer came to terms with living with a degenerative brain disease.
I had been in the neurologist’s office for less than a minute when he uttered the dreaded words, “Is there someone here with you?”.
Not that it was going to come as a complete shock to me at the age of 68 – as a lifelong hypochondriac and inveterate Googler, I had diagnosed myself with the degenerative brain condition Parkinson’s at least 12 months earlier. But my husband Julian, waiting in the car outside, was in for a shock.
The private neurologist told me he had diagnosed me the minute I walked in the room because I had “the Parkinson’s mask”, because apparently I was not blinking enough. He also noted a reduced swing in my left arm and when told to snap thumbs and index fingers together at increasing speed my left hand lagged behind my right.
This lack of dexterity was one of my first symptoms, along with restless legs and agonising cramp in my calves.
We drove the 95km home in grim silence. Julian’s attitude was that we would deal with things as they happen, not dwell on them now. Fortunately, he had designed our granite and glass house on Dartmoor with an eye to our old age, so that we could happily live on one floor. Suddenly, that future I could never imagine felt uncomfortably close.
Where we very much disagreed was in who to tell about my diagnosis, and when. Julian was all for telling everybody, starting with our four children: Jonah, Freddie, Maudie and Tabby, all in their 30s.
I knew that he would need to have someone to confide in and suggested he tell his brother, a retired doctor, while I told my son Jonah, an intensive care consultant.
I didn’t want to tell our other three children until I was on dopamine replacement medication and feeling mentally and physically stronger, so that the news would come as a surprise rather than a shock.
I told my two sisters, but not my brothers, and also a couple of my closest friends. But I found the stress of telling people was worse than keeping it secret – and stress is the enemy of Parkinson’s, as it acts as an accelerant, burning up dopamine – and it is the loss of this neurotransmitter which is the primary cause of Parkinson’s.
I had started to experience what I now know to be a symptom 20 years ago, when I began to lose my sense of smell. Generally, this happens five to 10 years before onset, so either it was unconnected, or my disease is a slow-burner.
Over the past few months, my smile had felt curiously constrained by my facial muscles. Add to this my slow walking and shouting out in my sleep occasionally, and I had enough ingredients for the Parkinson’s cocktail. Not a classic one – no trouble walking, no shaking or falling over, no drooling, no insomnia or constipation – but enough to make it a bitter one to swallow. Oh yes, swallowing, I could still do that. But give me another 10 years and who knows?
The neurologist – I think of him as Dr Pollyana – had told me I was in the early stages and I could have 10, even 15 years before things got bad “and by then you could be dead from cancer or a heart attack”.
He was so cheerily upbeat about it that it felt churlish to cry. But I spent the next two months in tears, freaking out every time Julian left the room. My confidence was shattered – I was too nervous to drive – and I had stopped looking for uplifting stories about women with Parkinson’s on the internet because there were none.
I could find no one like me – in the early stages, managing well on minimal dosage of co-careldopa and no visible symptoms. At about this time Jeremy Paxman and Rory Cellan Jones had outed themselves; Mark Mardell from Radio 4 followed a year or so later.
Paul Mayhew-Archer, writer of The Vicar of Dibley, has had it for over a decade and is unfailingly cheerful. Together with two others they do a brilliant podcast, Movers & Shakers, which should be prescribed for every Parkinson’s patient.
But where were the female journalists? Was I really the only one with Parkinson’s?
The levodopa drug (or co-careldopa) which Dr Pollyanna prescribed, and which has been the mainstay of treatment for 60 years, had an almost immediate effect on me – I felt like my old self: The strange internal jittery feeling disappeared, and my dexterity improved.
But the consultant wanted to double and then treble my dose so that I would get my arm swing back. This seemed crazy – overuse of drugs now can mean they lose efficacy in later stages and, in higher dosage, can cause dyskinesia (involuntary jerking movements).
Looking for a second opinion, I made an appointment at a private clinic with Prof Ray Chaudhuri, a renowned expert, who is director of the Parkinson’s Foundation Centre of Excellence at King’s College Hospital. It was expensive, but worth every penny. He explained that Parkinson’s should not be treated as one disease, because it comes in so many guises, with different symptoms in different people. And he gave me a vast amount of advice and added the drug rasagiline to augment the co-careldopa.
And whereas Dr Pollyanna had dismissed exercise as merely a “distraction”, Prof Chaudhuri believes that, together with a healthy diet, it is so important that it should make up 30 per cent of a personalised treatment plan for every patient because, apart from replacing dopamine, it also produces new nerve cells, something that drugs can’t do.
I had started running before the pandemic and was averaging around 10km a week. I have also been exercising weekly since diagnosis with Tom Burridge, a brilliant personal trainer in Exeter who is qualified in remedial work for health conditions. He puts me through a challenging set of dead lifts and bench presses, finishing with a short bout of boxing for brain coordination.
Apart from the endorphin high, it has given me back confidence in myself and is absolutely vital to my wellbeing. It was the realisation that I was not powerless, that there were things I could do to help myself, that enabled me to finally tell my other children. This was the hardest thing I have ever done in my life but also a huge relief. It turns out that 30-somethings are actually quite grown up.
My consultant at King’s College Hospital, who I saw after going on the waiting list wait at my local hospital, is surprised that my condition has not deteriorated in the past year – he says we can’t know whether I have just been lucky or whether it is down to my exercise regime and the Mediterranean diet I follow.
A couple of months ago, I climbed a mountain in Spain and “came out” on Instagram, revealing my diagnosis. I sobbed when I read the lovely comments from friends and relatives, but felt only relief that it was finally out there – and hope that someone in that terrible place I was in two years ago would see themselves in me.
What causes Parkinson’s?
Parkinson’s disease is a degenerative neurological condition. It is caused by the progressive loss of the cells in the brain that produce the vital chemical dopamine, which controls the body’s movements. By the time someone is diagnosed with Parkinson’s, they will usually have already lost about half the dopamine neurons in their brain. Such neurons are particularly vulnerable to degeneration because they require large amounts of energy, both to recharge and to transmit signals through the nervous system.
How common is it?
In Britain, there are approximately 145,000 people with Parkinson’s, which is reported to be the world’s fastest-growing neurological condition. Every hour, two new cases are diagnosed in the UK, the equivalent of 18,000 a year, and it is predicted that overall numbers could double by 2060. The overwhelming majority of people with the condition are aged over 50, and men are 1.4 times more likely to have it than women.
Parkinson’s is unique in every person
One key difficulty in making an early diagnosis of the condition is that there are more than 40 different symptoms of Parkinson’s, including chronic pain, insomnia, fatigue, constipation, hallucinations and illegible handwriting, as well as mental-health problems such as depression and anxiety. But the most common symptoms fall into three main categories: tremors and involuntary shaking; slowness of movement; and muscle rigidity. All of these can make everyday tasks, such as getting dressed or walking, a struggle.
Parkinson’s is not a death sentence
Although Parkinson’s does not significantly lower life expectancy, it usually does make old age grimmer, because of its degenerative nature and its association with dementia.
But Parkinson’s is incurable
Despite extensive research programmes, there is still no cure for Parkinson’s, though there are high hopes for new stem-cell therapies to regenerate nerve structures. In addition, much can be done to slow the progress of the condition and alleviate the symptoms.
New drug treatments show promise
On the pharmaceutical front, drugs such as levodopa and ropinirole can act as replacement agents for dopamine. Other drugs are also showing promising signs of potential to halt the advance of the disease, such as exenatide, used to treat diabetes, and azathioprine, which tackles inflammation by dampening down the immune system. Getting the dosage right for each patient is often a matter of trial and error, while users are also warned that some medications can have unusual or even dangerous side effects, such as obsessive gambling and compulsive sexual promiscuity.
A balanced diet and reducing stress can help
Other factors can be crucial in improving symptoms, such as a balanced diet, the avoidance of stress and regular exercise. Activities such as table-tennis and boxing are said to be especially beneficial for people with Parkinson’s, because they promote balance and co-ordination.
They were in a 'secure and happy relationship' - until his mum interfered.