David's thoughts

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Introduction

This page will be used by me, David Greaves, leader of Pedal for Parkinson's Challenge Team to air my thoughts.  As the preparation for the ride progresses there will be problems, successes, failures, ups and downs.  I hope to keep these thoughts,as team member Nigel says, a more full than empty account. In other words, more positive than negative.  The lead up to a ride takes a lot of preparation.There's a lot to think about and a lot to do.  The problem (that's not a positive start) is that I've got Parkinson's and people with Parkinson's have an experience of the world that most people don't know about. I  hope I can give you an insight into my world.  There are three themes which will keep recurring; procrastination; distraction and fixation.This is not a revalation of a preconceived scientific analysis of my condition, so having just said three themes, I have already thought of some more. One is tiredness, one is ups and downs and another is very practical, remembering to take tablets.  The style and content will develop as I go on. Everything will be spontaneous - cos that's the way I am.  So to prove the point, I've just decided to use a lot of photographs to tell the story.  I like taking photos.  My camera goes everywhere with me So remembering to take photos wll not be a problem - I do it all the time.  So let's start................................................

Monday 14th March, 2011.  It's 05.30 and I've already been up an hour and a half. This is normal. The day sometimes starts at 02.00.  I'm just going to pop out down the village and try and get a photo of an owl before it goes to bed.  Then I have to get shaved and prepared to go out at 06.45 - to hospital.  Today I have to have an operation on my thumb which I damaged 18 months ago in a cycling accident.   Well it wasn't an accident.A tractor driver tried to kill me.  Well that's what it seemed like at the time.

06.05 Procrastination - the owl is abed!!  Must to hospital or  I'll miss that.

Tuesday  15th March, 2011 Arrived Harrogate Hospital at 07.20.  Staff were all very kind from student nurse to surgeon.  My notes had more references to my cycling needs than my web site.  The surgeon is very switched on to my gear-changing and braking needs and as a cyclist himself knows the importance of  exercise to life style good health.  Came home with arm in sling and orders to rest.  I didn't need encouraging.  The problem is that I have to go back on Thursday to see the surgeon and have a pot put on. Trouble is I had planned to be in Cambridge with fellow rider Neil after day meeting on Wednesday in London  with Parkinson'sUK re the Challenge ride.  Spent the evening changing train tickets.  Last night's sleep went surprisingly well until I was suddenly awakened by something falling on my head.  It was my club-like bandaged hand, falling from maximum height,  in complete free fall after  a dyskinesic involuntary extension.  For the uninformed, dyskinesia is an interesting after effect of too many  years of taking Parkinson's drugs which are more problematic than the effects of Parkinson's itself.  It manifests itself in a whole array of involuntany movements which if put to music and filmed would out compete 'Dirty Dancing' for  an Oscar.  Feel I may have  damaged the wired thumb join which is not  supposed to move, but it now does. The plan for today is to prepare for my Parkinson's UK meeting  then catch a train to Cambridge.  On realising that my train went round the houses to Cambridge, Neil, my faithful friend, immediately went on line and found the nearest stopping station to his house and insisted I got off there and he would fetch me by car.  My route would have taken me further south to Stevenage.  He's a star.

Wednesday, 16th March,2011.  Up  early in Cambridge, caught train to Kings Cross and set off to walk to Parkinson'sUK Office  for big meeting re Pedal for Parkinson's. Realising we would be late, on the Mall we thumbed a taxi.  Told the driver we were doing a sponsored 2000 mile ride to cure Parkinson's and he promptly donated the fare.   Bless him. Our first donor. What an example to a million people queuing behind to do the same.   Who would miss a fiver.  If you are reading this  - do it now! together we can cure Parkinson's.

The meeting was a bringing together of all the agencies involved in building the new events and the Challange. It was staggering. The energy and enthusiasm was amazing.  This is going to be a truly inspirational event.  

     We  even had time for birthday cake for Neil.

On the 19.18 Train out of Kings cross, I had two hours to reflect on how Pedal  for Parkinson's has grown over the past three years.  In early 2007 a spark of an idea led three men with Parkinson's to a foggy cliff top in Corwall and the start of the first Pedal for Parkinson's, Lands  End to John O'Groats, End to End to End Parkinson's.  That spark has been kindled and this year with the full  power of Parkinson's Uk behind us,  Pedal for Parkinson's has   brought our dream to fruition, that anyone can join in and pedal to fund a cure for Parkinson's.

25th March, 2011  Despite my intention to give a daily account of my preparations, a week has slipped away with nothing reported.  This could be the old  Parkie-procrastination syndrome, which if you are not careful you  use as an excuse for being disorganised, or it could be that I have been so busy that I  just didn't find time to write. But excuses aside, it has been a very busy week, a week when my medication wasn't working very well.  'Oh no', I hear you cry, 'Not another excuse.'  Normally I am very well.  The medication I take is very good and most of the time my motor systems work well. The only problems I have to deal with are the side effects of the drugs.  More of that later.  But this week, my medication  has left me with 'down' times, when I  have felt very  strange. I have become stooped and I shuffle instead of walk.  My neck and shoulders have felt tense and all my movements have slowed down.  Many years ago I used to have a recurring dream that I  was trying to walk and I felt as though I was walking in treacle. The dream has come true. The secret to feeling OK with Parkinson's is to constantly review the effectiveness of the drugs and tweek the dosage as necessary.  The other major factor is getting a good night's sleep.  Without sleep your drugs are not effective.  The problem is that the drugs themselves cause erratic sleep patterns.  I never have a problem going to sleep but I can be waken again  by three  or four in the morning.  I used to lay tossing and turning but then I decided not to fight it.  If I was waken, i'd get up.  The irony is that I enjoy that freedom to do my own thing in the middle of the night.   My mind is very active and creative.  I often waken up with a good idea, usually  about the Challenge ride and spend hours writing letters and emails.Often, I start to feel tired so have I a supply of blankets down stairs and I sleep on the settee,  so as  not to disturb my wife.  More often than not, just before dawn I go out,  down to the local reed beds at a nearby gravel pit to listen for my Bittern, a very rare bird which I discovered last year with a friend, which I reported to the RSPB.  I am now the voluntary recorder for the site. The RSPB and Tarmac, the gravel pit owners are very excited about the find.  During winter and the big freeze, I went down  to the lake before dawn and fed the Bitterns with Cornish sardines.  Then a second exciting discovery, there were three Bitterns, not just one

Last week was  a busy travelling week.  I went to London twice to Parkinson's meetings, and struggled in hotels without my wife to fasten shirt buttons with a pot on my arm.  Oh yes the pot.

This is the pot.  I was  fed up with it after  five minutes.  After  a week, I'm sick of it.  It goes everywhere with me. There's no relief.  And it's on my right hand and yes I'm right handed. So I can't write except like a snail. I can't fasten my trousers. Yes with Parkinson's you don't just lose control, you lose your dignity. And worst of all, I can't ride my bike and  I'm supposed  to be trraining for a 2000 mile bike ride.  I've  visions of being at the back and psychologically that's  the worst place to be.

and tired. I have a Concept 2 rowing machine which is guaranteed to make strong men weep, a cross  country ski machine  which takes a lot of practice to ride, a very comprehensive multi-gym which has more ropes and pulleys

than the  Spanish Inquisition, a static bike,  a weight bench and loads of free weights.  Most recently I bought a set of rollers for my road bike, so now I can ride inside and watchc TV at the same.  It takes the tedium out of cycling

on the spot but it doesn' t improve the programmes.  This bit of kit has been my saviour.  Even with a pot on my arm, I can still pedal.

29th March, 2011  Summer is here. Brilliant - and we are getting lovely warm days though when I was returning home at 06.30 this morning after badger watching,just  down the road, there was a keen frost.

r

to go cycling                     

20th April  Well it has been a glorious month.  The weather here ha been much warmer and drier than typical Aprils.  In fact it has been perfect cycling weather.  I've been
very disciplined, cycling most days.  It starts with a late night intention. Yes intention is the secret. If you don't have a plan, your day could be doomed.  Before I go to
bed, I get out the clothess I am going to cycle in and put them in the bathroom so that when I get up early, those are the only clothes I can access without disturbing
my wife.  I shuffle down stairs quietly with an armful of kit then go through the ritual of struggling to get dressed before my first  medication is in  the system.  I swear
my arms are getting shorter or my leg are getting longer, but reaching my feet never used to be a problem.  After a struggle I'm finally dressed and hey ho, I'm ready
for cycling.  Even if my intention has diluted with the cold light of dawn, at least I look like a cyclist..  I find that that is sufficient motivation.  I seldom go out before 9.30
when cycling partner Nigel arrives, after the streets are aired, as my Dad used to say, but strutting around looking like a cyclist certainly helps to reinforce the intention.
Mostly I can't wait to get out there.  I just love it, particularly at this time of year.  Spring is such a beautiful season, full of fresh colour, new life and optimism. The early
stages of training have been and gone. Now I am beginning to feel strong. I can  power up the hills in high gears.  I just need to build endurance.  Last week, we were
motoring along at 22mph and it felt comfortable, averaging 15.5.   We estimate our time for the actual ride on a very conservative 10 mph.  Four hours in a morning
and three in the afternoon would get us 70 miles up the road.

Training

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Organiser David Greaves's page

The Master of the Universe Returns

The world has been a quieter place since the End to End finished.  The quest for world domination was put on hold when the Master of the Universe, Robert Duckworth experienced an inter galactic glitch, when his high tec communications portal experienced a monumental malfunction sending him crashing into a lower stratosphere where he had to resort to piscatorial battering once  again. Yes, he's been working in the local chippy. But stand by world - he's back - yes back in communication and ambitious plans of cycling across America are crossing the ether.  By special request from his fan club, all pretty girls and Nigel, here is the latest sighting of the Master of the Universe.

The Cathedral Visits

The cathedral visits were the backbone of the ride. Each cathedral was a very important vertebra, a meeting point where PD Branch workers, the media, the public  and the riders were welcomed by representatives of the church.  It was a delight to visit so many magnificent buildings.  I would like to thank Guy Taylor of the Harrogate Branch for all the time and effort he put into arranging all the visits and for the cathedral staff and officials for their kindness and hospitality.  Collectively, the cathedrals were the spinal column through which our very important message was passed. To see the message being read for the last time in windy Edinburgh, please click HERE

An Important Message

To all the 120,000 Parkinson’s  Disease sufferers in  United Kingdom,

And to their families and friends

Parkinson’s Disease will be cured

Research is in its end game phase

A cure will be found

NOW is the time

To fund research into a cure

Pedal for Parkinson’s is riding

End to End to End Parkinson’s Disease

1000 miles Lands End to John O’Groats to help fund that cure

We need your help

The cure will be for everyone

Parkinson’s Disease will be consigned to the history books

If you have Parkinson’s Disease

or know someone with Parkinson’s Disease

Please help

Together we can cure Parkinson's Disease

Please Donate to www.justgiving.com/pedalforparkinsons2009

Every penny you give will go to research to find a cure

A message of support from the Archbishop of York

“Please accept my prayers and best wishes to all those participating in the End to End to End Parkinson's Disease  cycling event on behalf of those diagnosed with Parkinson’s Disease. May you successfully raise awareness and complete your journey.”

                                                                                    With every blessing

                                                                                                                        J Sentamu

file:///C:/Users/Dave/Videos/2009-12-04(1)/MAQ00001.MP4

The Day Riders are the key to the success of Pedal for Parkinson's.  The core riders attract all the publicity and the praise, but the day riders deserve all the credit for their effort, enthusiasm, team spirit and not least of all, their fund raising.  They share the same goals and aspirations as the core  team, some of them are PD sufferers, but all of them have the same united aim, to rid the world of Parkinson's Disease.  The End to End riders, to a man, were united in believing that the day riders were part of the team and that they deserved a good experience.  They had put themselves to a whole lot of inconvenience to be at the start at 8.30 in the morning. Some had left home at 4.00 o'clock in the morning and didn't get home until late evening.  We were flattered that so many people had expressed a wish to come and ride with us for a day, or sometimes  more. We promised that no-one would be left behind or struggle at the back by themselves. At the other end of the spectrum we determined to give the serious club cyclists a challenging day.  That proved to be a tall order. We  made so many good friends and we sincerely hope you all keep in touch.  We would love to hear your accounts of your day.  I would love to put them on the web site.  Each rider committed to raising £200 for the fund, but from the snippets I hear some of you have raised considerably more than that. I look forward to putting your collection on the just giving site and see the total shoot up. 

During the ride some of you expressed an interest in going end to end in the future..  That would be great.  Don't wait to see what happens next year, let me know now and we can plan round it.

I hope I have included everyone in the picture.  Let me know if I have missed you out.

Scottish Regional Manager, Andrew Sim, leads the way back to Edinburgh, after leaving home in Edinburgh at 4.0am to cycle to Berwick to meet the End to End team for breakfast, a 122 mile round trip.

The Team - "the best bunch of companions you could wish for"

L to R: Neil Manning, Rachel Connolly, David Greaves, Nigel MacVean, John Dickinson, Robert Duckworh, plus Bruce Lorimer

So - what made us all laugh?

If you would like to share the joke that was whispered just before the camera clicked which caused the reaction in the second picture and the happy team photograph in the first picture, just post a fiver on justgiving, send an email to davidgeaves@pedalforparkinsons.co.uk and I will send you the joke.

A tribute to the team

by David Greaves

oI could not have wished for a better team had I searched from  end to end of the land. As it was, they all volunteered at different times without meeting the other members of the group, so the chances of them all getting on was a bit hit and miss, but when  they gathered for our training weekend, they gelled immediately. The secret of the

success has been diversity, humour, tollerence and determination. With an age range of 21 to 64, a student and three old men, a computer wizz and a female firefighter, how could they have anything in common. But they did. They immediately gained the respect and admiration of the day riders by befriending them and supporting them and without being coached in the art of diplomacy became natural ambassadors for the project.  Every one of them was a strong, fearless rider and all of them got stronger and stronger as the journey unfolded.  I never heard one complaint about the difficulties of the ride or the aches and pains that are inevitable. The humour was constant, biting and reciprocal.No-one took offence, no-one caused offence.The days were spent in light-hearted chatter, interspersed with good humoured racing and mutual support. The back marker was seldom alone. Someone invariably dropped back to support them.

The star of the show was without doubt John Dickinson. The conventional treatments do not control his PD symptoms, in contrast to the other two of us with the problem. He struggles to walk without crutches, suffers with muscle cramps in his left arm and hand and often has trouble sitting or lying still. Put him on a bike and he is strong and determined. He managed to gain an amazing level of support from his friends and family who accompanied the ride for much of the time. He guided us all the way using a GPS, kindly provided and set up with a fantastic route by Andy Holdaway. He was joined by close friends Andy and Emma Holdaway from the start to Oxford, and was supported along much of the route by his parents and sister but most importantly Sara, John's devoted wife who provided endless support, energy and determination. Before the start, I promised I would get him to the end, and between us we did it. Well done John!. You are the true face of Parkinson's and the hero of Pedal for Parkinson's 2009.

Neil Manning and I became very close friends last year when we went end to end for the first time.  He is essentially a quiet , gentle man when you get to know him well and one of the most loyal and caring friends I have ever met.  He is generous, helpful and patient and is the first to give support when things go wrong.  That is the side of him you get to know if you look past the facade,.  It took the team a while to really get to know him, because the side that you meet is the quick-witted comic, the clown, the jester, the poet, the wordsmith and the actor.  His conversations are a series of instantaneous razor-sharp retorts, word associations, limericks and  sayings, mixed generously with a free-flowing dribble of gobble-de-gook consciousness. He kept us all entertained.  That said, he is one of the strongest in the group and powers past the best of us. His fearless approach to downhills last year gained him the title of 'Downhill Meister'. When the going gets tough and he senses I feel tired, he quietly eases in front and drags me along mile after mile, his powerful legs driving his heavy, gererously equipped Harley-Davison of the cycle world effortlessly mile after mile. Two Parkies going end to end twice - not bad mate.

Nigel MacVean freely admits that he initially came along for the challenge of a long distance bike ride. He spends his retirement looking for new experiences, many of which are physically testing and End to End seemed the sort of thing he was looking for. As a long term friend, he and I had trecked together to Everest Base camp in 2001 and he heard all about our first end to end last year first hand.  He was immediately excited at the prospect of a 1000 miles on a bike but he also decided to join to support me in my project.  From the word go he set out his stall, planned his equipment meticulously and went hunting for a bike. It wasn't long before he returned from one of his regular visits to his second home in Spain with a beautifully finished high spec road bike and Nigel being the gent that he is to add a little bit of class it was discretely monogrammed.  The red-walled co-ordinated tyres eventually proved to be his downfall. On the third day of the ride, he had a series of punctures that put him at the top of the team league table, a position he held to the finish.   Nigel is a very methodical, organised person.  He makes lists.  His bag is always neatly packed. He is always first in the shower and always the first to be ready for breakfast and dinner.In a hostel dormitory of men, he stood out from the rest. He was the only one who lounged in bed in neatly pressed pyjamas, reading the Times.  I swear he slept with his mouth closed. But everyone noticed a chink  appearing in his organisational armour shortly after the puncture gala.  Asked if he had repaired his spare tube yet he always answered, 'tomorrow'. That went on every day for two weeks.  That makes you a PROCRASTINATOR Nigel, though I'm sure you'll tell me it's a continental habit you've picked up in Spain. 

Nigel proved to be a competitive rider. In an attempt to oust me from my title 'Uphillmeister' (undefended) he paired up with Rob and went in for a series of  sweaty charges up the steepest of hills in the hottest of weather - most ungentlemanlike.  Unfortunately, they forgot that I had announced that the start of the official up hill championships commenced immediately we crossed the Scottish border and the title was never contested so in fairness I can't award the title to either of them. According to Rule IIIVXCiii(AzQf) part 13, that means I retain my title for another year.

Thanks Nige for your team spirit, diplomacy and friendship.  But remember people, should you decide to do a tour of the country meeting Bishops, Canons, Deans, Mayors, Sherrifffs or celebrities, remember to let Nigel go first, cos he'll know them already - or his mother will.

 Robert Duckworth is a very mature, confident 21 year old who is well able to hold his own, in any kind of company.  He is the modern day Mr. Spock  who communicates through his hand-held blueberry computer/phone constantly, even asking advice about his choice of meal in a restaurant before ordering. His mac computer is not far out of his sight and in a discussion he'll quickly refer to some evidence to substantiate his point from somewhere deep in the ether.  Robert knows where he is going, except when he is riding a bike.  If you ask him nicely, he'll play you a Powerpoint presentation of his plan for life with five ambitious but realistic goals.  He aims high, not in a reckless, unattainable shot in the dark, but in a confident belief in himself and the desire to explore life's offerings.  He is so sure that anything is possible, given the right circumstances, that he acquired  the title  'Master of the Universe'.  Robert is great company. Life is never dull with Robert around.  He is equally at home with older people.  All this gives the impression that Robert  is a self-focussed, ego-centric individual who is in life for what he can get out of it, but this could not be further from the truth.  Below the surface, 'The Master of the Universe' is a sensitive caring young man, who a few years ago featured as The Face of Parkinson's in tribute to his care for his mother who was diagnosed with PD when he was eleven. You would find him at the back of the pack most of the time, making sure the back-marker was OK, or dashing ahead to bring back a front runner who'd missed a junction.  Robert was a team player who got on with everybody, was the butt of many of the jokes and jibes, but never missed an opportunity to strike back.  You wouldn't expect any less from 'The Master of the Universe'.  Thanks Robert.  The Team  will miss you.