26-05-2025
‘I have Parkinson's – to an onlooker I appear drunk'
It was only while working at Claridge's hotel, that Mark Gilham, 63, realised he might be suffering from Parkinson's. 'One of my team noticed that if my hand was holding my knee when sitting, it would start shaking very slightly. He said it looked like his dad, who had Parkinson's.' Gilham, an assistant chief engineer, spoke to his doctor, and then a specialist, after the encounter, which confirmed the diagnosis. 'He said it looked like Parkinson's as soon as he saw me.'
At the time, he says, 'I wasn't unduly worried. I knew almost nothing about the disease and my symptoms were hardly noticeable.' Given that there are over 40 different symptoms of Parkinson's – and not everyone shakes – it is a disease which is often misdiagnosed until it takes a more serious turn.
Parkinson's is caused by damage to dopamine-generating nerve cells in the substantia nigra – part of the midbrain linked with motor control and muscle tone. Other than Alzheimer's, it is the most common neurodegenerative disease, and the fastest-growing neurological disorder globally. It is an incurable, progressive disease, and it affects everyone differently.
'There are the basics,' says Gilham, 'such as tremor, slow movement and stiff and inflexible muscles. But there is also depression and anxiety, balance problems, loss of smell, insomnia, memory problems, constipation and, I feel one of the worst, apathy.'
Yet for five years, Gilham managed to continue his work at Claridge's in a job that he 'loved, but could at times be very stressful. Tremor and stress do not like each other.'
Eventually, after 33 'enjoyable' years, and with worsening symptoms, he decided in October 2020 to hand in his notice. He and his wife, Penny, 64, sold their house and bought a bungalow on the South Coast.
How have his symptoms affected his day-to-day life? 'When I'm on an off period, I tend to shuffle rather than walk because my balance can be affected. I have even fallen over a few times. To an onlooker, I could appear drunk.
'Some of the simple things I find difficult are opening pages of newspapers; reading while holding the book; anything that requires small controlled movements of the hands like wiring a plug, building a model kit (once a hobby of mine), riding my motorcycle, even carrying a glass of beer (if you like frothy beer then I'm your man). Using a computer can also be frustrating as I tend to double tap the keys.
'But,' he continues, 'I force myself to do most of these things. It may take longer and be very frustrating, but I always say I've got it easy, as there are a lot of Parkinson's patients who are a lot worse off than me.
'I read from a Kindle rather than books because it's easier to prop up or wedge somewhere. And we use sugar cubes in the kitchen because I was putting more on the floor than in the tea.'
On the advice of his specialist, he decided to find something that 'got my head and hands talking'. He chose to build Lego. 'It's become quite a hobby for both of us. My wife and I recently built the Titanic, our biggest build yet.'
His wife, Penny, who has Type 1 diabetes, continues to work, while Gilham is in charge of the housework because, he says: 'I don't want my wife doing it when she's working full time', although, he says, he hasn't mastered the ironing. He's slowly decorating and, with help from a local carpenter, he's recently fitted a whole new kitchen.
'While all this may sound quite normal,' he laments, 'interjected in it all is a sometimes uncontrollable tremor in my left hand and wrist, which even at the best of times, can make the simplest thing difficult and frustrating.'
Parkinson's has also massively affected his social life. 'It has virtually stopped. Aside from my family life (our lovely caring daughter, Dawn, and an equally lovely granddaughter Kira) 80 per cent of my social life revolved around motorcycles – a weekly Wednesday bike meet and rides out in the UK and overseas.
'For the first five years of living with Parkinson's I could still ride long distances, but Covid brought a halt to our trips away and my rides never restarted.'
Having to stop work was also a dramatic shift in Gilham's life. 'Work was a big part of my life and I loved the interaction with my colleagues and team. Claridge's were brilliant when I was first diagnosed (you don't actually have to tell your employer, but I told everyone). They gave me a lot of support and time off when I started taking the medication, which often made me sick and very lethargic.' Eventually he 'had to give in to the disease.'
Gilham suffers 'mainly from a tremor in my left arm/wrist, which is reasonably controlled some of the time with medication' which, because it targets dopamine-producing nerve cells, 'does weird things to my head.' He has 'experienced hallucinations, sickness, reduced appetite', often feels 'fatigued' and suffers from insomnia. When he does sleep, he nearly always has 'vivid dreams, which I remember well when I awake.'
The main Parkinson's medication he is on is levodopa. This has been around for over 50 years and, thankfully now for Gilham, 'certainly does work to relieve my symptoms', even though it comes with side effects, which can cause something called Dyskinesias, uncontrolled movements of the body.
Yet Gilham's main fears are connected more to how the illness will progress.
'Swallowing can become a problem. You can lose the ability to do simple tasks like dressing and washing, travelling, even cooking and cleaning. In fact everything you take for granted can become lost.'
Gilham is part of the admin team who run a Facebook Parkinson's Disease group. Some of the issues he sees there 'make me shudder' and 'worry about where my journey will take me.'
So what does the future hold?
Currently Gilham is on the waiting list for a 'quite invasive' brain operation called deep brain stimulation (DBS). Before being offered the operation, he had to 'take and pass some intensive memory, psychological and neurological tests.'
DBS involves having electrodes inserted into the part of the brain that have stopped working, and a control unit is inserted under the skin which acts in a similar way to a pacemaker.
Feeling hopeful, he shares that 'it's not a cure, but I've been told there's a 75 per cent chance that it will reduce my symptoms. Obviously there are a few potentially unpleasant side effects and things that can go wrong, and it might not work at all, so my fingers are crossed.'
Gilham, however, remains upbeat and determined not to let the disease gain ultimate control.
'Some days you could look at me and see nothing wrong, no tremor at all. Some days my medication works perfectly, I can be 'normal'. The problem is, I never know when that's going to happen.
'But we just have to make the best of it; you have to play the hand you are dealt. Penny constantly asks if she can help, when I'm trying to do something that the tremor is doing its best to make a mess of, but I nearly always say 'no thanks' because then Parkinson's has won.'
