My 71-year-old mother
also has Parkinson’s.
She was diagnosed only about six months before I was though had been suffering more acutely and for longer than myself before receiving the correct medical attention. As I read back through my earlier writings it seems strange that I didn’t put two and two together with my own situation and I needed a neurologist to tell me what now seems obvious. I suppose this is because of the subtle nature of the disease that many medical professionals (my own GP included) struggle to diagnose correctly.
Another feature of Parkinson’s is its slow progression. Unlike having certain types of cancer where you might only have a year or two to live, Parkinson’s is a gradually developing neurodegenerative disease. In fact, I could easily have already had it for ten or twenty years before the effects became evident. So, in retrospect, my initial reaction was more extreme than it needed to be: I can wait and see how the disease progresses over the next year or two before making any radical decisions about work and home.
I went to see my mother shortly before Easter so that we could compare notes and empathise with one another. Being her first-born child, we have always enjoyed a strong mother/son bond, but after an afternoon sitting in the garden in beautiful spring sunshine our shared experience brought us even closer together. It is a strange coincidence that we were both diagnosed almost within the same year, despite being 24 years apart in age.
Four generations of our family have now suffered from the disease, so there is almost certainly a faulty gene passed on to me by my mother. It is likely to be autosomal dominant Parkinson’s in scientific terminology, meaning each child has a 50% chance of getting the gene, and it is not passed down in the sex chromosomes so it affects men and women equally.
The cruel irony is that, despite our shared genetics, one of the reasons that her onset may have been delayed so much was that she was a twenty-a-day smoker for most of her life, and smoking is one of the things known to delay onset of the disease. As a child I frequently chastised her about her unhealthy habit, whilst I led a squeaky clean lifestyle. That said, exercise is also supposed to delay onset, but despite being pretty athletic for several decades, I still got symptoms in my mid-forties. So perhaps luck is a big a factor as anything.
The furthest I have traced back our familial Parkinson’s is to my great-grandfather, William, a GP in Surrey. He had two sons, the eldest of whom spent many years struggling with Parkinson's until he died in his mid-seventies. The mystery is why the younger son, my grandfather, did not show any signs of the disease despite living to the grand age of 93. The faulty gene would have been passed through him to my mother and onward to me.
My mother and I discussed all of this as we sat at the garden table under cloudless skies and amidst budding flowers and greenery. We speculated as to what could have caused my grandfather’s apparent immunity. If we could definitively identify some factor that protects against the disease then we might have the seeds of a cure.
The only two factors we could think of were his somewhat hedonistic life as a serial womaniser, and his habit of drinking a glass of single malt whisky every day. A long shot though these may be (and difficult to assess scientifically) they do, to me at least, seem plausible lines of enquiry.
The hedonistic lifestyle could indicate an excess to normal levels of dopamine (or equivalently, a reduction in the inhibitory pathways – nothing in this topic is ever simple) caused by some other genetic factors, that compensated for the elevated risk of Parkinson’s. The plot thickens here as my uncle, who sadly died in his fifties, was a paranoid schizophrenic and, whilst that disease is poorly understood, one of the contributory factors is speculated to be excess dopamine. So, perhaps my grandfather carried genetic factors that offset each other and passed one set down to my mother and the other set down to my uncle.
The whisky theory seems less likely. I had a look at the chemical composition of single malts and it is very complicated, so it is conceivable there is some protective chemical in there, but it would presumably be hard to identify.
I related some of this to The Professor when I saw him this week for a check-up and to renew my prescription.
He thought the whisky theory was quite amusing: if only that were true, he mused, it would save a fortune on clinical trials! He was more sympathetic to my other theory but, short of exhuming my grandfather’s body, it is difficult to gather meaningful data.
He did put me forward for genetic testing and I went to have blood samples taken after the consultation. Now that I am on the NHS, I was told it would likely take about six months to get the results back. However, I also participated in a second genetic study this week, going through the strange process of spitting into a tube and the sending my saliva in a FedEx package to a research lab in the US funded by the Michael J Fox foundation. So I may find out sooner whether I have one of the known genetic mutations, like LRRK2, that contributes to Parkinson’s.
One way or the other I am determined to get to the bottom of what has been a blight on my family for four generations. And with a daughter of my own plus five brothers and sisters who have a further eight children between them, it is highly probable that some of the next generation are carrying the mutation. And of course, the faulty gene affects not just those carrying it, but their loved ones too….
