Single malt whisky

Monday 26 March 2018

(See also related post: a glass of whisky a day keeps the neurologist away)

A few miles off the A96, halfway between Aberdeen and Inverness is small, sleepy Dufftown. With its wide streets, handsome clocktower and local granite that sparkles in the Banffshire sunshine, it feels like an affluent place. My parents lived in nearby Huntly about twenty years ago, so we passed through Dufftown several times en route to hikes in the Cairngorms.

The reason for Dufftown’s wealth is the whisky industry: the town is home to several distilleries and is at the heart of the Speyside whisky trail. It claims to be the “malt whisky capital of the world”.

The most famous distillery in Dufftown is Glenfiddich but the one I am interested in is The Balvenie.

Avid readers of this blog may recall a post (a family affair) in which I speculated that what may have helped my grandfather avoid Parkinson’s for 93 years was his habit of drinking a glass of single malt Scotch every day. At the time I was dismissive of this, but recently I did some more research into the subject.

The magic of whisky is that from a simple mixture of barley, water and yeast, the processes of fermentation and distillation and the reactions with the wood in the storage cask over long periods lead to an extremely complex mixture of chemicals. Expert tasters and amateurs alike debate ad nauseum the nuances of different single malts and various specially aged editions. For myself, I generally prefer the smoky flavour of the island malts like Talisker and Laphroaig, but I am far from an aficionado.

Amidst this juxtaposition of fire water and subtle flavouring is a substance called ellagic acid which is purported to have therapeutic effects on certain cancers. It’s worth stressing that this is not scientifically proven and in fact the US Food and Drug Administration goes as far to say it is a "fake cancer 'cure' consumers should avoid".

But I also found one research study demonstrating that ellagic acid has neuroprotective effects in rats induced with a form of Parkinson’s (http://acta.tums.ac.ir/index.php/acta/article/view/5029). This study was performed by a research group in Tehran in 2016, and as far as I know has not yet been repeated.

I am not one to chase every food fad. As with many other diseases, whole industries build up around unproven dietary supplements for Parkinson’s. Moreover, there are many promising treatments that work well in rodents but do not appear to be effective in humans.  

Nevertheless, given my grandfather’s experience I was tempted to undertake my own clinical trail.

I emailed The Professor about it:

Dear Professor

I was reflecting on why my grandfather never developed PD symptoms despite living to 93. You may recall that I joked he drank a glass of single malt whisky every day.

I understand that single malt has relatively high concentrations of ellagic acid and there have been a couple of recent studies demonstrating neuroprotective effects of this phenol in rat models of PD (links below).

I appreciate that what works on rats frequently doesn’t work on humans, and that other claimed health benefits of ellagic acid are as yet unproven, but was wondering (a) if you had heard of this as a target for PD clinical trials and (b) if you see any harm in me undertaking my own uncontrolled experiment...

He is a busy man and I only got a one line reply:

I haven’t heard of this - to be honest one of the problems here are that the preclinical models aren’t good enough 

Undeterred, I bought several bottles of single malt including some Glenmorangie and Laphroaig and I started drinking a small glass a day a few weeks ago.

The whole exercise is a long shot and the best I can hope for is to stabilise my Parkinson’s rather than reverse it. I don't realistically expect it to work, though my condition does seem to have settled down since the start of the month.  Single malt whisky for Parkinson's: you heard it here first...

After some further research I discovered that the highest concentrations of ellagic acid are in The Balvenie whiskies which I can hopefully source at one of the specialist whisky shops in London, rather than making a trip all the way to Dufftown, pleasant though it would be to revisit that part of the world.

I also found out that ellagic acid is present in various fruit juices like cranberry and pomegranate.

But single malt whisky is more fun…

Softly spoken

Friday 23 March 2018

Parkinson's is a strange disease. Just when you think it has stabilised, it surprises you with a new symptom.

In no particular order the main symptoms I’ve had to date are:

1)   Stiffness in shoulder, arm and leg (rigidity)

2)   Slowness of movement (called bradykinesia)

3)   Difficulty with fine motor control (writing, typing etc.)

4)   Tremor

5)   Disturbed sleep

6)   Fatigue

7)   Constipation

8)   Loss of sense of smell

9)   Vision problems

10) Expressionless face

11) Involuntary jerky movements (sometimes called dyskinesia)

I had the dubious privilege of adding four more items to this list in recent weeks:

12) Dry throat at night

13) Pins and needles

14) Dry, itchy skin

15) Soft voice

To the above lists, I am tempted to add another item: generally feeling a bit crap, but I suppose this is covered by fatigue.

The movement symptoms are controlled quite well by the medication, so that, whilst I am aware of it, for the most part other people don’t notice I have Parkinson’s.

My mother and I enjoy periodically comparing notes about our latest symptoms. (This is not exactly wallowing in shared pity; I would say it’s more driven by intellectual curiosity.) Although the progression of the disease is very similar for both of us, there are some differences. For example, she hasn’t had smell or eyesight problems but gets more fatigued than me.

The other strange thing is how the symptoms ebb and flow both from day to day, but also over longer periods. Some days I have a bit of tremor and other days I have nothing (see my previous post on and off). Constipation is not often a problem these days whereas my loss of sense of smell remains a constant. Sleep has improved but I usually have at least one terrible night each week and pay for it the next day.

Surprisingly, the symptom that is perhaps most noticeable to others is my gradually softening voice. I sometimes feel like I have a permanent dryness in my throat, particularly at night and I think this is closely related to the volume of my speech.

Speech problems are common in Parkinson’s, as is speech therapy to help keep the voice trained and effective.

There is a local choir that my Parkinson’s contacts talk about. It must sound horrendous, and I am not ready to embarrass myself quite that much yet.

Although I haven't yet participated in any Parkinson's activities (as much as anything because they're normally at times that don't suit a working person), gradually I am getting to know some local PWPs - "people with Parkinson's", as we often refer to ourselves. Tomorrow I have organised a lunch at a local restaurant for five PWPs who live in the neighbourhood, plus assorted spouses, and Clara and myself.

They are all older than me, but at differing stages of progression; some fairly recently diagnosed and others having lived with the disease for many years and been through brain surgery. Although we are all from different walks of life, we can draw strength from our shared bond. I feel sure our mutual support for each other will prove invaluable in the coming years as we each tread the individual paths that have been put in front of us.

I have deliberately chosen a very small Italian that is quiet on a Saturday lunchtime. One thing I have learnt is that noisy venues and PWPs don't work well together.

So I'm looking forward to a low key, relaxed lunch with my PWP friends.  Just what I need to be able to listen to all their - softly spoken - good advice.

A family affair, part 4

Saturday 10 March 2018

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:

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…

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)