How long will I live with Parkinson's? How will it progress?
Given that Parkinson's is a highly individual disease, no medical professional can answer these questions. Statistically I have about 20 years to live, but it could be much more or less than this. I could be living a fairly comfortable old age, or be in a wheelchair in my sixties. This makes it difficult to plan for the future.
Recently however, I was able to find some clues from my own family history.
My mother’s paternal grandfather, William, and her paternal uncle, James, both had Parkinson’s. My great uncle Jim lived on the other side of the Atlantic so we did not see much of him, but I have a distant memory of him visiting us for Sunday lunch in South London when I was perhaps 10 or 11. I recall he was tall and slim but not much else about his appearance. I do remember he had significant tremor and, as a young boy, I couldn’t help but fixate on his knife and fork shaking in his hands as he ate. A shame that is my only significant recollection of his visit.
Uncle Jim died over twenty years ago, but he had two daughters, Barbara and Alice who are both still alive. I had last seen them several years ago, when they were passing through London on their way to a holiday in Scotland.
My mother had some old addresses for her two cousins but she had also lost touch over the past few years, so I decided to try the address that I guessed was most likely to be current and communicate the old-fashioned way – by airmail.
I started my letter as follows:
Dear Barbara
I hope this letter finds you well.
It seems like a very long time ago that we met briefly near King's Cross
station in London; it was a pleasure to see you and Alice at that time.
A lot has happened - mostly good - since then. But unfortunately, I have
unwelcome news that affects our family.
Both my mother and I were diagnosed with Parkinson's Disease within the
last year or so. In my case this is classified
as young onset and as you can imagine it was an up and down 2017 for me.
If it is not too sensitive a subject for you to talk about, I would be
interested in understanding more about your father's experience. In particular, I am trying to piece together
the root cause of what is almost certainly a genetic disorder in our
family. I have discussed the enclosed
family tree with my neurologist, a specialist in hereditary movement disorders,
and am currently undergoing some genetic testing. Any information you have in the same topic
could be very valuable…..
I waited fully six
weeks before, disappointingly, I received my letter back in pristine condition,
still sealed and marked “return to sender”.
Luckily, I was able to establish contact with Barbara shortly afterwards via Facebook, and subsequently by email. She gave me Alice’s email too, and both were then immensely helpful in filling in some of the blanks about the history of Parkinson’s within our family.
It turned out that William, who was smoker, probably started to show symptoms around the age of 60 but much more than that is difficult to know as in his day people didn’t really talk about such things. Stoicism was the norm, suffering in silence and certainly not sharing health issues with your children. Despite being a distinguished doctor himself, his obituary, published in the British Medical Journal, simply states that he died at the age of 76 after "a long illness".
In uncle Jim’s case, the exact onset was similarly not clear, but he likely started to show symptoms soon after turning 50 and he lived with Parkinson’s until his mid-seventies. He was fit and active throughout his life. By all accounts he was a proud man and a good father.
Alice says in one of her emails:
Luckily, I was able to establish contact with Barbara shortly afterwards via Facebook, and subsequently by email. She gave me Alice’s email too, and both were then immensely helpful in filling in some of the blanks about the history of Parkinson’s within our family.
It turned out that William, who was smoker, probably started to show symptoms around the age of 60 but much more than that is difficult to know as in his day people didn’t really talk about such things. Stoicism was the norm, suffering in silence and certainly not sharing health issues with your children. Despite being a distinguished doctor himself, his obituary, published in the British Medical Journal, simply states that he died at the age of 76 after "a long illness".
In uncle Jim’s case, the exact onset was similarly not clear, but he likely started to show symptoms soon after turning 50 and he lived with Parkinson’s until his mid-seventies. He was fit and active throughout his life. By all accounts he was a proud man and a good father.
Alice says in one of her emails:
He lived well over 20 years with Parkinson's and it progressed
relatively slowly. He had been in good
physical condition, slim, fit and exercised regularly at a gym before it became
popular. He also skied and played some golf.
I gather his last few
years were more difficult, in a wheelchair some of the time and in discomfort. Alice’s description of the end is sobering:
The last 5 years or so he had trouble swallowing and speaking. He lost any motivation to help himself and
was hospitalized for a couple of long periods.
On the day he was going to be moved to a nursing home he went into
cardiac arrest, not surprising given his previous heart trouble, and his system
was septic due to bed sores. He lived another 10 days.
There is a growing
view amongst researchers that Parkinson’s likely comes in different types, with
varying prognoses and with each one likely to respond to different treatments.
It is probable that all the Parkinson’s in our family has the same underlying
genetic trigger, with the smokers benefiting from later onset but with the
non-smokers like uncle Jim and myself showing symptoms earlier in life.
Although uncle Jim's experience is just one data point, it is the best indication I have of my own future: 20-25 years to live, mostly good years but with a somewhat uncomfortable ending.
Medical science has moved on since his day, I hear you say! Well, yes, but actually not by much. Whilst thankfully bed sores and septicaemia are largely a thing of the past, the primary drugs used to treat Parkinson’s, like L-dopa, are the same and the main innovation has been the introduction of brain surgery (Deep Brain Stimulation) in the later stages.
Nevertheless, the insights provided by my relatives across the pond were very helpful and it was lovely to have re-established contact with the extended family.
There was some exceptionally good news too…
Although uncle Jim's experience is just one data point, it is the best indication I have of my own future: 20-25 years to live, mostly good years but with a somewhat uncomfortable ending.
Medical science has moved on since his day, I hear you say! Well, yes, but actually not by much. Whilst thankfully bed sores and septicaemia are largely a thing of the past, the primary drugs used to treat Parkinson’s, like L-dopa, are the same and the main innovation has been the introduction of brain surgery (Deep Brain Stimulation) in the later stages.
Nevertheless, the insights provided by my relatives across the pond were very helpful and it was lovely to have re-established contact with the extended family.
There was some exceptionally good news too…
Barbara and Alice are
both leading happy and active lives into their seventies – with no signs yet of
any Parkinson’s.
(Related posts: A family affair and The end game)
(Related posts: A family affair and The end game)
