A year on the hard stuff

Saturday 23 March 2019

My one man experiment to see if drinking a glass of single malt Scotch every day can help with Parkinson’s has been going for a year now.

So what’s the outcome? Have I single-handedly made an astonishing breakthrough where billions of dollars of investment by big pharma have failed? Or is this yet another candidate treatment for PD to add to the reject pile?

Highly unscientific though my experiment has been, I am tempted to draw three conclusions:

1. Single malt whisky may have a small, short term effect on slowing the progression of Parkinson’s
   

Anecdotally, my Parkinson’s was pretty stable for most of the past year. And symptoms got slightly worse roughly when I started working abroad again a couple of months ago (I am back in Copenhagen two to three days every week, unable to carry bottles of whisky in my hand luggage). But I think the correlation is weak and certainly my symptoms have not improved overall.

So at best progression of my disease may have slowed a little, but in this it is difficult to be conclusive.

2. In the long run it probably makes minimal difference
   

Even if it had a small short term effect, I think in the long run things will essentially be the same.

3. I like whisky

The right thing to do now would be to stop drinking whisky completely so that I can at least compare the effects with and without my special medicine. But let’s be honest: my experiment, like so many trials for new Parkinson’s drugs in recent years, has essentially failed.

Nevertheless something good came out of it... I discovered that I enjoy a taste of Speyside or Islay every day. So in this particular endeavour the pleasures of the Scottish fire water outweigh scientific rigour.

That said, I probably will cut back my consumption a little. But not because I’m worried about pickling my liver. 

Whilst I’ve been focusing on whisky for the past 12 months, I’ve been missing out on another one of life’s simple, alcoholic pleasures: the occasional glass of red wine...

Seven reasons to be cheerful

Friday 1 March 2019

We Brits do like a good moan.

Take the weather. It’s usually either too hot or too cold or too wet or too dry, but rarely just right.

When it comes to talking about your newly diagnosed neurodegenerative disorder on an online forum, some doom and gloom is, of course, justified. But the forum on Parkinson’s UK is particularly full of negativity. If you want stories of depression and despair, serious drug reactions and family breakdowns, then fill your boots.

On one recent thread, two newly diagnosed women in their early forties both said the same thing:

“I keep searching for positive stories….”

“I too would like to hear some positive stories.”

I thought about it for a few minutes and then posted the following:

“In my first year after diagnosis I went through my fair share of ups and downs. But here are 7 reasons I’m now positive:

1.    Young onset PD typically progresses very slowly. Most people with YOPD lead a decent life for several decades.

2.    With the right medication, the motor symptoms of PD can virtually disappear - the main challenge is fatigue.

3.    I still work almost full time (4.5 days per week) in a demanding job (10 hrs+ per day, lots of travel).

4.    I still go on nice holidays, enjoy activities with my daughter, pursue my hobbies and even still run a little (I can’t run marathons any more but I don’t want to anyway).

5.    There is a huge amount of money going into research which could result in a cure in our lifetimes.

6.    I’ve got to know several people locally with PD and we are very supportive of each other.

7.    Although some days are pretty tough to get through, having PD has sharpened my focus on what matters in life. With a supportive family, I can honestly say I’m happier now than I’ve ever been.

You will likely have to make some adjustments but you can still live a wonderful life for many years to come…

Best wishes”

The responses were truly heart-warming.

“Can I just say how good it felt to read something so positive. I was diagnosed a few months ago at the age of 50 and have been struggling to find some solid ground, so to hear from somebody like you is lovely and gives me a real boost.

Thank you.”

“Your reply is exactly what I’m looking for

Thank you”

“Thank you, it makes such a change to hear something positive.”

I was probably embellishing a little, and the long-term prognosis is not so rosy, but I felt good that day.

Negativity can be self-reinforcing. But a little positivity can be infectious too.