The bizarre tell-tale signs that show your loved one could have Parkinson’s
. . . including sleeplessness and SMELL — by the lawyer nicknamed Mr Loophole
CELEBRITY lawyer Nick Freeman, nicknamed Mr Loophole for his record at winning acquittals in motoring cases for highprofile clients, is used to life in the proverbial fast lane.
So when, on a country walk together, his usually energetic younger brother John failed to keep up, he reacted with customary exasperation.
‘I hadn’t seen John for a couple of months,’ says Nick, 61, a solicitor and father of two. ‘So we hooked up to have a day walking our dogs. But I noticed he was moving really slowly — we usually march along at a fairly cracking pace.
‘As brothers, we’ve always sparred, so I just told him to get a move on!’
Yet John, now 58, who worked in the IT industry before retiring several years ago, was equally baffled. ‘I just couldn’t move any faster,’ he says. ‘I couldn’t understand it.’
Stopping for a pub lunch, Nick noticed other changes in his brother.
‘John used his fork really slowly. He also had this musky smell — not unpleasant, just unusual. But even though I’m used to saying what I think to him, I bit my tongue because I didn’t want to alarm him. It was clear something wasn’t right. I just didn’t know what it was.’
That was in 2013. Two years later John was diagnosed with Parkinson’s disease. His slow movements — bradykinesia — and musky scent were early symptoms of the neurological condition that affects about 12,000 people in Ireland. That number is expected to double over the next 20 years, mainly because people are living longer.
Looking back, there were other clues. ‘John has always handled the finances for our mum, Pat, who is 87.
‘But when he talked to me about the figures, he was hesitant, as if his brain was taking longer to process them — even though he has always had a sharp mind,’ explains Nick.
‘I discussed this with Mum, and began to research his symptoms on the internet. My ex-wife’s father had Parkinson’s for 20 years, and I remember the hesitant way he would hold his cutlery.
‘In the months before John was diagnosed it started to dawn on me, rather frighteningly, that he might just have the condition.’
MOST people who develop Parkinson’s are over 65. It is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a drop in dopamine, a chemical that helps regulate movement.
‘Although most people are aware of visible symptoms such as tremor, there might be as many as 40 lesser-known symptoms,’ says David Dexter, emeritus professor of neuropharmacology.
‘These range from muscle stiffness to depression, anxiety, difficulty sleeping at night and memory problems. Although the more unusual ones may only affect a small number of people.
‘The disease can be present for many years before diagnosis, since non-motor symptoms such as anxiety or musky odour can happen first and may be regarded as having another cause.’
The odour is yet to be fully understood, although scientists are analysing sweat samples from people with Parkinson’s to identify the molecules responsible and so develop new tests for the condition.
John’s early symptoms included poor sleep.
‘This also started around 2013,’ he says. ‘I just couldn’t get comfortable in bed and my wife, Janet, kept telling me I’d been thrashing about.’
Professor Dexter says: ‘This is known as REM sleep disorder and happens because Parkinson’s can affect the area of the brain responsible for sleep.’
‘I also found my writing was getting smaller as I wrote across a page,’ recalls John. ‘I now know Parkinson’s prevents the hand from moving in a fluid way.’
There’s no definitive test for Parkinson’s: diagnosis is based on a medical examination and assessment by a specialist.
At Janet’s insistence, John saw his GP in January 2015 and was referred to a neurologist, who advocated ‘a wait and see’ approach — although Parkinson’s was one possibility discussed.
Six months later, with no signs of his symptoms abating, John’s diagnosis was confirmed.
‘It hit me like a bolt,’ says John. ‘I thought the doctor had to be wrong.
‘I’m a strong guy — the type who likes to chop down trees or drive around on tractors. So none of this made any sense. I was also only 55.’
‘We couldn’t get our heads around it,’ says Nick (he and John also have a younger brother, 53year-old Tim.
‘John has always been such a big, physical guy. I’d have my head in law books and he’d be fitting his own kitchen. He was just too young and vital for this to be happening.’
Although there’s no one specific cause for the condition, Professor Dexter points out that Parkinson’s can be triggered by ‘risk’ genes as well as environmental factors such as pesticides and pollutants.
Since being diagnosed in July 2015, John discovered that five men who lived near his previous home have developed the condition.
‘Our garden bordered fields where farmers were spraying crops. Is there something in it? It seems like a massive coincidence,’ he says.
‘But I’m not sure if there’s any point going into it further. I need to look forward to make sure, as a family, we manage our situation.’
For John and Janet, this has involved selling their 18th-century home and building a bungalow.
The problem with Parkinson’s, John says, ‘is that it is like having a beautiful car that unpredictably misfires. Friends ask when I’m coming to see them, but I prefer to stay close to home as I sometimes have episodes that leave me feeling very sick and unsteady on my feet. I just want to stay near what’s familiar. It knocks your confidence.’
There is no cure but drugs such as levodopa and ropinirole — John takes both — control symptoms by increasing the level of dopamine that reaches the brain.
‘Exercise is especially important as it has been shown to increase dopamine receptors so people become more responsive to medication,’ says Professor Dexter.
‘Obviously it has to be tailored to the level of ability at the time of diagnosis. But for those in the early stages, up to two hours a day can really help improve balance, joint and muscle control.’
JOHN walks three to four miles most days — it leaves him aching, but he is determined. ‘I have also started swimming as I get a lot of pains in my legs and the water helps with that.
‘Nick suggested press-ups, which shows he’s a far better lawyer than medic, since it hurt like mad and I had to stop.’
When the pair get together now, they make light of John’s condition — a brand of gallows humour that some might find hard to take.
‘I do silly things like shake a glass if I’m passing one to him,’ says Nick.
‘I call him “Shakin Stevens”. An outsider might find this awful, but this is how we’re dealing with the situation.
‘Obviously I know the reality of Parkinson’s. Especially when John tells me he’s been out walking his dog at 4am because he can’t sleep, I just feel desperately sorry for him. The only thing I can do is to make him laugh.’
John concurs. ‘I give as well as I get. I say: “I’ll get my own back when you have a stroke”.’
Both men are confident researchers will soon find a cure.
‘Meanwhile, we stay positive, laugh at our appalling jokes and focus on the present,’ says Nick.