An interview with Neil Russell– running from London to Barcelona for PD awareness, June 16, 2023 by George Ackerman, Ph.D, J.D.
Biography
Until 2017 I would consider myself an ordinary kind of chap, I have a family and a job, outside of work my focus was triathlons, training and competing was a big part of my life. But after the Vichy Ironman I found; training was starting to take over my life. Cutting down training hours I would have more time to spend with my partner Nicky, yet still enjoy the social elements of meeting friends and being outside training. I can’t remember the exact date, but around April 2017 I set off from the small village of Broadway with my cycling buddies for a training ride. The weather that morning was perfect for hard, fast riding. My only memory is someone laughing aloud as we set off.
The next thing I remember was lying on the verge of a country lane, choking on blood as it dribbled down my face. Little did I know but my life was about to change forever. I was drifting in and out of consciousness as a helicopter ambulance was hovering above me – it landed in an adjacent field. A doctor and a couple of medics jumped out and ran over to me.
I was then taken to the John Radcliff hospital in Oxford. The next day the doctors told me that I had a broken eye socket and jaw, which would be treated a couple of days later by securing the broken bones with titanium plates. I was also informed that I sustained a brain hemorrhage. On top of all that I had a broken wrist, crushed finger, and broken bones in my right hand. To this day I can’t remember how I got off my bike! My cycling friends said I hit a large pothole. The recovery from the cycling accident in April 2017 was slow and tedious, lying in a hospital bed for 3 weeks. What shocked me was the amount of muscle loss I experienced. I was so weak! When I first got home, I could not even make a cup of tea or open the fridge door, both my hands and wrists were still in plaster. Over the weeks and months, I slowly started to get better and as soon as I could I started to rebuild my strength, with help from Nicky who was immense throughout. Eventually my life started to return, I still had a few issues with my hand and shoulder, and still do, but life still goes on.
The father-of-two was diagnosed with Parkinson’s in 2018 and is determined to not let the condition define him. Neil decided to complete this challenge after running from John O’Groats to Land’s End last year, raising over £11,000 for both charities.
Please tell me a little about your background and what got you involved with awareness.
On 4th July 2023, the World Parkinson’s Congress opens in Barcelona. I plan to arrive in Barcelona for this conference just before it starts, my means of getting there.
Running.
I am running now and started from London to Portsmouth, took the ferry across to Caen in Northern France, running through France and over the Pyrenees into Northern Spain where I’ll arrive in Barcelona for the opening of The World Parkinson’s Congress.
I will be running to raise money and awareness for Cure Parkinson’s https://cureparkinsons.org.uk/ and Parkinson’s UK https://www.parkinsons.org.uk/ I’m 65 and I have Parkinson’s.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I wanted to raise funds for the charities to find a cure and let others know who have been diagnosed that exercise and activity can help with Parkinson; s and raise awareness of the Congress and prove to myself that I can run from London to Barcelona.
I am determined and refuse to be another victim and give into Parkinson’s which is why I take on an extreme endurance events – to tell Parkinson’s that it doesn’t have it all its own way and that others can do it.
What effect can running long distances have on an individual with Parkinson’s?
1: It’s personal challenge to prove to all, including myself, that I can do it.
2: To raise money for Cure Parkinson’s and Parkinson’s UK, who support others with Parkinson’s and help promote a better awareness.
3: To demonstrate that when you’re diagnosed with Parkinson’s that it’s not the end. You can still do amazing things if you believe you can and have the determination.
What would you like to see as a future goal for your running?
Through the challenge I want to show people that if you have Parkinson’s, you can keep active and do amazing things. I know that not everyone can or will want to run almost 1,000 miles, but I hope to inspire at least one person to get active, whether that’s going for a brisk walk, or a short swim – whatever you enjoy and is within your limits.
What events do you participate in?
World Parkinson’s Congress opens in Barcelona. See https://wpc2023.org/
How can someone get in touch? What is your website?
www.neilstillcan.run or info@neilstillcan.run
Press https://www.neilstillcan.run/media-coverage
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Don’t give into Parkinson’s – fight it!
More on Neil’s journey
Parkinson’s diagnosis
Months before my accident I started to feel that certain tasks were taking me longer such as my handwriting, using a knife and fork and the odd twitch in my hand but I thought it was just down to getting older. The night I will never forget took place several months after my accident – Nicky was away on business. I was sitting watching TV when out of nowhere my right arm jumped and broke into a continuous tremor that I’ve lived with ever since. At the time I thought it was a trapped nerve and after a good night’s sleep it would pass; but it didn’t! After a few weeks I decided it was time to go and see my doctor, he was very nice and was of the view I was drinking too much coffee and diagnosed an essential hand tremor. So, I reduced my 7 to 8 mugs down to just 2, but it didn’t make the slightest difference, my hand continued to tremor.
I also noted that my handwriting was becoming increasingly untidy and as before I was slower on my right side. The hand tremor continued but deep down I knew something wasn’t right. I started to check out Dr Google. My handwriting had worsened; I was having difficulty with smell, taste, and balance. And every time I Googled these symptoms, Parkinson’s kept coming up.
I asked my GP to refer me to the John Radcliff Hospital in Oxford who were world class when treating me after my bike accident. I saw the Professor of Neurology who carried out numerous tests, he then confirmed what I already knew. “I had Parkinson’s.” M y first response to his diagnosis was ‘can I still run’? He said ‘yes’ and went on to explain more about Parkinson’s and the positive effect that running and energetic exercise has with Parkinson’s. Although I knew I had Parkinson’s I was still in shock, and it took me a few months to come to terms with it. At the same time my neurologist advised me I should consider giving up cycling, which I reluctantly did. So, I started running again.
The Parkinson’s affect.
I have deliberately made a point of not finding out how the many Parkinson’s symptoms can affect you because for me ignorance is bliss. The less I know then the chances of me beginning to imagine symptoms and worry myself are reduced. There are three main symptoms that do impact a lot of people with Parkinson’s, but there are over 40 others.
Essentially, Parkinson’s develops when cells in the brain stop working properly and are lost over time. These brain cells produce a chemical called dopamine. Symptoms start to appear when the brain can’t make enough dopamine to control movement properly. It is a degenerative disease and will get worse over time and there is currently no cure. My understanding is that a new generation of medication is not far off… but until then… There is a side of Parkinson’s that’s very difficult or nigh on impossible to describe or explain, it’s a mental or emotional state that some might describe as depression or anxiety, but it’s more than that.
A good friend of mine who is younger than me who has Parkinson’s said once that “the only people who truly understand Parkinson’s are people with Parkinson’s”. To give you a flavor of how Parkinson’s impacts me daily:
- I can’t write a simple note, or message on my granddaughter’s birthday card.
- I rarely get quality sleep.
- Carrying drinks in my right hand is a no, no.
- I have a very limited sense of smell and taste.
- I’m constantly constipated so I won’t go into too much detail.
- I am constantly trying to hide my hand tremor, for fear of what others might think.
- When I eat dry food like toast, cake, or biscuits it sometimes is awkward to
- Swallow.
- I sometimes find it hard to speak.
- I find it difficult putting a plastic lid on a takeout coffee cup.
- My co-ordination can be difficult depending on how tired I am.
- Falling over is something I must be very careful of especially when I’m
- running and tired
- I become uneasy or panic when travelling on my own. For instance, going into
- London or any large town on my own on the train I find scary.
When you are diagnosed with Parkinson’s it changes you, some days you’re fine, but occasionally it gets you down. I go through a phase of feeling sorry for myself, I feel why me? I’m not the same person anymore, I’m different, I’ve changed. I look at myself in the mirror and I see someone I don’t like. This strange person is dead-pan, miserable looking, menacing, expressionless. I have a vacant expression in my eyes. A sort of foreboding depression lingers over you, tiredness grips you, the fear of what lies ahead is constantly in the back of your head.
Follow along with Neil’s run LONDON – BARCELONA (L2B) at
https://www.neilstillcan.run/london-barcelona
Stages of the run…
ENGLAND
25th May London – West Horsley
26th May West Horsley – Lugashall
27th May Lugashall – Portsmouth
FRANCE
28th May Caen – Villers Bocage
29th May Villers Bocage – Flers
30th May Flers – Lassay Les Chateaux
31st May Lassay Les Chateaux – La Chapelle Rainsouin
1st June La Chapelle Rainsouin – Soeurdres
2nd June Soeurdres – Saint Martin du Fouilloux
3rd June Saint Martin du Fouilloux – Vihiers
4th June Vihiers – Bressuire
5th June Bressuire – Beceleuf
6th June Beceleuf – Fontenay
7th June REST DAY
8th June Fontenay – Cherbonnieres
9th June Cherbonnieres – Vibrac
10th June Vibrac – Chalais
11th June Chalais – Villefranche de Lonchat
12th June Villefranche de Lonchat – Duras
13th June Duras – Sermet
14th June Sermet – Port-du Casse
15th June Port-du Casse – Lafrançaise
16th June Lafrançaise – Labastide Saint Piere
17th June Labastide Saint Piere – Verfeil
18th June Verfeil – Soupex
19th June Soupex – Ville Longue
20th June REST DAY
21st June Ville Longue – Bugarach
22nd June Bugarach – Sournia
23rd June Sournia – llauro
24th June llauro – Le Perth’s
25th June REST DAY
SPAIN
26th June Le Perth’s – Vilaur
27th June Vilaur – Girona
28th June Girona – Malgrat de Mar
29th June Malgrat de Mar – Mataro
30th June Mataro – Barcelona