Am I winning yet?

Saturday 21 April 2018

Am I winning yet? Am I in control of my Parkinson's?

I would love this blog to be all positivity and optimism every week, like some other Parkinson’s blogs I have come across.

But I prefer to say it like it is, good and bad, warts and all, no sugar coating. I want to ask the difficult questions, find honest answers and tackle the consequences head on, no matter how unpalatable. Although I am generally an optimistic person, I have no truck with uplifting platitudes that obfuscate the truth.

So the short answer to the question “am I winning yet?” is no, I am still a slave to the daily whims of my disease. 

But, slowly, things are improving.

This week on holiday in Barbados, fatigue aside, I hardly noticed my condition. On the whole I slept well (despite the noisy main road nearby).  Unlike in Malta last year, I had no difficulties swimming. Driving is less of an issue than it was last summer. I am contemplating returning to work full time. And some recently developed symptoms have largely abated. Though I still struggled with things like writing postcards and opening bottles.

Is this a turning point? Is my daily imbibing of single malt whisky actually achieving something? Or is this all part of the natural waxing and waning of Parkinson’s?

I will have to wait and see.

So, not winning yet, but perhaps the game is starting to change. Watch this space...

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.