Running 1500 Miles for Parkinson’s… With Parkinson’s

Hello hello!!! Remember me? Ultra Runner Girl? I must apologize to my adoring fans (aka Mom and my sister) for my extended blogcation. Much has happened the past couple of months, but mostly in the non-running-related category. I finished up my exams for my LLM (masters of law) in the UK in May, took off to Croatia for a little vacation and then immediately moved to NYC upon my return! Taking that mini vacation without my trusty rusty laptop induced a short bout of separation anxiety (I have been known to spoon my macbook at night), but once I got the taste of freedom, it was hard to force myself to sit in front of the computer during my free time. Hence, the blogcation.

Anyhow, I’m in New York now for at least the next few months, working (albeit unpaid…sob!) for an organization that provides diplomatic and legal advice to small/struggling governments. I feel like my life is moving a million miles a minute, but that’s NYC for ya! More on NYC and my current running training (back to being coached by the incredible Ray Zahab!) in a subsequent post.

More important than my trivial accounts of my running adventures is the story of a friend of mine: Alex Flynn. I’d like to be able to tell you about how incredible he is without having mention Parkinson’s – because he is obviously so much more than his disease – but in order to help get his message across, I have to talk about it. Parkinson’s isn’t Alex’s whole story, but it is a part of it, and it has become a part of what drives him forward.

Alex is a kick-ass-don’t-mess-me-with lawyer in the UK. He’s married with two beautiful kids (er, let me know if I accidentally left one out of the tally Alex!). He has a gorgeous wife. He’s a crazy ultrarunner (yes!!!). Alex is also 39 and has Parkinsons Disease.

Alex is racing 10 million metres in some of the toughest races on the planet to raise £1million to fund research into Parkinson’s disease. Seriously eh? Ultrarunning is hard enough as it is, but this guy does it with PD. It isn’t often I feel like a wimp, but next to Alex, I realize there is a lot more I could be doing.

Rather than me tell you about Alex, I’d rather he did it in his own words. I did the following interview with Alex about a month ago, right before he was embarking on his next big adventure: running from London  to Rome. Yes. All on foot. Today, Alex announced he completed his journey, all 1455 miles of it. KICK ASS. Read on to find out more about this incredible guy (and please consider making a donation in support of his fundraising efforts!).

Ultra Runner Girl: So Alex, can you tell us about when and how you first found out you had Parkinson’s?

Alex Flynn: It was January 2008. It was like any other day. I’d got to work, prepared my breakfast of porridge and coffee, and had only just sat down to the pile of work on my desk when I reached for the cup of coffee. I picked up the cup and my hand shook. Now everybody gets shaky hands now and again, for one reason or another and, judging by my lifestyle of hectic work and intense training, the odd muscle spasm would not seem out of place. However, the shake of my hand was not of my doing and was completely outside my control. I thought that this wasn’t me and it was a bit strange but my hand soon stopped shaking. Then a little while later, it did it again. Obviously, this continued and eventually I went through a process of elimination; taking out the alcohol, caffeine, etc. Nothing changed it and my shaking in my right hand would come and go of its own accord.

In the end, and actually quite sensibly, I managed to put pride aside and go and see my doctor. After being passed from neurologist to neurologist I was eventually told I had idiopathic Parkinson’s disease and because of my age this was young onset Parkinson’s.
Ultra Runner Girl: I can’t imagine… How did you react to the news??

Alex Flynn: I went numb. To be told you have a chronic neurologically degenerative disease which currently has no cure doesn’t leave you with a lot to say. In fact, I think my wife took the news the hardest. My mind was blank except for the word “Parkinson’s”. In honesty, I don’t remember driving home. The anger came later, along with denial and good dose of black mood.

At the time I had entered the Marathon Des Sables for 2009 and this gave me something to focus on; a distraction to take my energies and give me something to  channel them towards. I didn’t take on the 10MillionMetre challenge there and then. This came after I was taken out of the Marathon Des Sables due to viral pericarditis. I returned home after raising some money for a Parkinson’s charity; but I thought to myself that I could do much better. I was determined to push further and harder and raise more money to help find a cure. So, during a conversation with a good friend I said that I was aiming to raise £1 million for Parkinson’s research. My friend asked what I was going to do to raise that money. I replied that I was going to run 1 million metres and hopefully get a donation of a pound per metre to raise the money. On reflection though, that’s really not that far if you run a bit. So I suggested 10 Million Metres and decided that a number of the races in that 10 Million Metres would be some of the toughest in the world. That decision was made with the understanding that only the distance in races counts towards the 10 Million Metres. The rest seems to be history.

I am really positive now compared to how I was after my diagnosis. The 10 Million Metres challenge has changed my world, my life, and my outlook. So far it has taken me on many amazing adventures, pushed me beyond what I thought possible, and (I hope) will drive me further beyond that too in the future!

Ultra Runner Girl: Can you describe your training for us? Are some activities easier than others? (i.e. biking vs running etc.)

Alex Flynn: My training is mixed. I’ve never subscribed to a training schedule but have more or less taken an approach to incorporating cross training with running. My main reason for this is to avoid injury. Until recently I also have not used any monitoring system but have merely gone on the way that I feel; which is usually going until complete failure; to the point where I know that I have had a decent workout. Biking is definitely easier than running for me now. However swimming has recently been my nemesis. The reason for this was that I almost drowned when I was five years old, and that fear had been holding me back until recently. I decided that I needed to take control of my fear. So to that end I have undertaken some hypnotherapy and it has worked wonders. I’m really looking forward to my triathlons now!

Ultra Runner Girl: In your experience, has Parkinson’s been more physically or mentally challenging?

Alex Flynn: It’s both. But I think my stage of Parkinson’s is not yet as advanced as some other sufferers, so for me the challenges are there but with perseverance and a bit of sweat I can still overcome. The mental aspect is harder. I am an exceptionally positive person but it is a hard sentence to be told you have currently incurable chronic neurologically degenerative disease. I think that the hardest part of living with PD is experiencing the social embarrassment of trembling or not being able to do something; those things most other people take for granted. For example, using a mouse on a computer, raising a glass to your lips without the glass shaking, or doing up buttons. I hate doing up buttons!

Ultra Runner Girl: Do you have to take any extra precautions? What changes have you had to make?

Alex Flynn: Three days prior to my Europe 135 race I accidentally took the wrong amount of medication. I took my daily dose in one go, which was not good. Now I take my meds in smaller doses spread out over the day.

I always take somebody with me. Not just because I have PD, but because it’s more fun running with someone else. You get to run, have a laugh and share the experience with a good friend. I was certainly glad the assistance of Dave Clamp by my side when crossing the Bavarian Alps.

I also take my medication with me just in case. I think most people would agree that (irrespective of Parkinson’s) any athlete attempting an ultra or challenging course should come prepared with the right kit and nutrition for the race. Speaking of nutrition, for me it’s incredibly important to keep my energy levels up as I am constantly on the move; even when I am sitting still. In that sense I am always burning energy and need to refuel. I take gels on shorter runs, but on longer runs, I eat anything and everything I can get my hands on. On long runs I am just ravenous. However I don’t like bananas so I always take some apricots with me. I love apricots!!!

Ultra Runner Girl: What role has sport had for you? Were you always a crazy adventure-junkie?

Alex Flynn: I have always been compulsive in respect of things that I do. I don’t mean drugs, or other things like that. That’s never really interested me. What has always interested me was sport; particularly running. I used to love cross country at school. I got a kick out of just running and running and running and not stopping. It was just fantastic. I also like challenging my fears. For example, I have a fear of heights so I abseil when I can. I recently abseiled down the Deloittes building in London and it was a real buzz!

I look at sport as my way of being able to cope with the disease that may stop me moving. I’m determined to move as much as I can before anything like that happens. You see, I’m extremely competitive and want to do the best I can. Although I know that I won’t come first, the emphasis from me it’s challenging myself to go further, harder, and push myself beyond my limits. If I succeed then I really feel a sense of achievement and happiness, irrespective of the place I finish!

Ultra Runner Girl: I’ve often discussed the fine line that exists between stubbornness and persistence, and how they can be both an asset and a hindrance. Maybe I’m presuming here, but I have to imagine that you have got a bit of both in you to take this on! Am I right?

Alex Flynn: I think you’re right. Running to the extent that I do is incredibly difficult. Some would say, selfish. I am a stubborn individual and I think that, at stubbornness has allowed me to push through pain, fatigue, and my body wanting to give up, to achieve. However stubbornness and persistence are intertwined and the benefits are that I have completed and competed in some amazing adventures. The downside is twofold. The first is that the impact on my family has been quite marked. A runner into ultramarathons spends a lot of time training which takes you away from your family. This is true of my situation. However I have a very understanding family who are aware of my persistence to raise £1 million and find a cure for Parkinson’s. Secondly, the other downside is the cost of races and travel. My sponsors, however, have been a lifesaver in respect of my 10MillionMetres challenge and to whom I’m indebted with gratitude for the belief in my campaign.

Ultra Runner Girl: Would you  say that this has been a process of accepting your limitations, defying them, or both?

Alex Flynn: I always push against my limitations no matter how hard my disease pushes back. I know my enemy. In fact, I’m reading a book at the moment called “Running on Empty” and in it there is a quote from a guy called Chris Douglass (who sadly died in a car crash), but whom I wish I had had the pleasure of meeting. Marshall Ulrich, the author of the book, uses this quote and I think it’s quite apt.

“The best I can figure is that we’ve been told to many times that adventure just isn’t in the cards for everyday folk like you and me. It’s reserved for the people we read about in books and magazines, not mere mortals like us. While I’m not buying it!”

Outside of Parkinson’s, I think that sums up the essence.

Ultra Runner Girl: Tell us about your favourite moment in training or racing so far.

Alex Flynn: Going back and finishing the Marathon des Sables in 2010. It was amazing, hot (incredibly hot), super tough and everything you wanted it to be and more! Passing the finishing line and feeling the medal round my neck was worth it in every way and more. However, I believe that my 1800+ mile run to Rome in two weeks’ time will set a new pinnacle for me in favourite moments.

Ultra Runner Girl:  You’ve said the 1 million pounds fundraising goal isn’t really about the money – it is about the statement. What statement do you want to make?

Alex Flynn: I don’t think that it’s a statement that I make. I think I use the word to mean that society, everyone who donates to the 10 Million Metres cause, will hopefully recognise the impact of this disease across the world. That collective recognition turning into a physical act by the donation of funds to a worthwhile charity and raise money for the vital research into a cure for this incredibly debilitating disease that affects 6 million people around the world (and may well affect millions more who have yet to be diagnosed). I look upon the £1 Million as a beacon, a shining light that states that we, as a society, want to make change happen, to find a cure, to alleviate the burden on society that Parkinson’s will cost, to help millions of people around the world reclaim their lives and make change happen now.

Ultra Runner Girl: Any last words of advice?

Alex Flynn: Make change happen. Keep moving!

To donate to Alex’s cause, visit:

http://www.justgiving.com/alex-flynn

You can also check out his personal website and links to learn more about parkinsons. Don’t forget to find him on facebook! (10 million meters!)

http://www.alexflynn.co.uk

http://www.cureparkinsons.org.uk

3 Comments »

  1. One of boxing greatest trainers, who stands in the ring with some of today’s best boxers, suffers from Parkinson… Also fighting the disease through sport.
    Great article, tanks !

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