Sunday, 24 April 2011

We did it!

We did it, 5 days, 86 miles, many laughs and a few tears later Wendy, Spencer and I achieved our goal – walking from Bristol Temple Meads to the centre of Reading following the Kennet and Avon canal in unseasonably hot weather, to raise funds and awareness for our respective charities Diabetes UK and The Cure Parkinson’s Trust. I have so many people to thank in terms of their time, hospitality, moral support and/or generosity in terms of money donated. I hope I haven’t missed anybody out and apologise if I have, I will never forget this once in a lifetime experience.

Mina, Paul’s relatives Mike and Angela, Peter and Francis, the landlords of various public houses along the way who allowed use of their facilities even if we weren’t purchasing anything, Cotswold Outdoor Leisure, David and Chris Hemmings, Claire Perry MP, Sarah Nicholson (speech therapist) and Carrie Swan (McTimoney Chiropracter), Niki Hammond, Judith and Steve Hough, Karen at Wilcot and the Vicar at Hungerford, Helen Matthews from The Cure Parkinson’s Trust, Jon Stamford (aka Slice of Life), my Big Bro Anthony Duthoit for staying by my side on the penultimate day, my mother Jane, our book group buddies and in particular Karen and Laura, Wendy’s big sister Sue for her tender nursing skills which saved my feet from disintegration, Wendy’s little brother David, the wonderful on-line community of PD Junction, the many people we met along the way who donated money, my neighbour Sandra  and the nurse at Swindon hospital who convinced me that my little toe was not about to drop off from serial abuse, my two beautiful children and Wendy’s younger son, and of course Wendy. Special thanks go to Paul Hughes and my long suffering husband Tim, and not forgetting the patriach of the Spencer Clan (Wendy's Dad) – Chris Spencer. Last, but by no means least, a tremendous thank you to my hero, Spencer Hughes – without his leadership we would never have made this!

I would also like to apologise to my two poor feet who carried me all the way from Bristol to Reading – and in particular my extremely swollen and angry little toe on my right foot!
Some blogs will be out soon recounting our adventures along the way – once I have recovered sufficiently long enough to sit at the pc!

The money raised will be put towards the next phase of trials for GDNF. More information about this can be found by clicking on Tom Isaacs' and Jon Stamford's blog.

Tuesday, 19 April 2011

Failure is not an option

Woke up this morning filled with a mixture of excitement and absolute fear - and in pain with my neck and right shoulder. Yup my back was playing me up - I cannot turn my head to the right, it is too painful. Thankfully a nice hot shower resolved that situation, but this is something I really don't need - together with my friend Wendy and her son Spencer, we are spending the last 5 days walking, and talking, the entire length of the Kennet & Avon canal - all 86 miles of it. We checked the forecast last night - and joy oh joy we were in for a heatwave - not what I really wanted! Walking 86 miles in the heat! But at least there are some parts of the K&A which are nice and shady - and too many stretches which are not.

My mind turned to the possibility that I may not be able to do the entire 86 mile stretch as my mothers words ring in my ears from my telephone conversation with her last night that no-one would mind if I failed. Well, I hate to admit it, failure is not an option here, failure has no place in my vocabulary any more. Instead I thanked God for making canals nice and flat - apart from the infamous Caen Hill lock flight at Devizes - smack in the middle of it all.13 locks if I have counted right - what joker put those there? And at this point I thought to myself "I wonder if anyone will notice me finishing at the bottom on Thursday evening and starting at the top on Friday?". I think Wendy and Spencer would for a start - perhaps I could bribe them. Spencer should be a pushover, Wendy on the other hand......

Yesterday we had a lovely day, with a visit from one of my oldest of friends (no, I don't mean that she is old - we've known each other since 1980). Judith and I talked about anything and everything under the hot hot sun - except Parkinsons. For a while all felt normal - my brain cells were not dying prematurely, I did not have the shake from hell, and more often than not disturbed nights. And then I realised I hadn't taken my lunchtime dose of brightly coloured drugs which were designed to do the job my stupid brain had abdicated responsibility for.

Back to thoughts of the next 5 days. There was to be an excess of positive thinking, as well as downing copious quantities of cider at the end of each long long day. At the mid-point of the walk where we will have put more miles behind us rather than ahead of us we will be joined by the infamous Q from Cure Parkinsons Trust and the venerable Slice of Life aka Jon Stamford. Apart from our first day, we should have company all the way to Reading. 

But one thing is clear - I am going to have to pack light for the next two days, as we will be staying in Bristol tonight, and with Wendys in-laws tomorrow. The next time I see my bed will be Thursday evening. Packing light is not something I have a great deal of experience in - I have plenty of experience though in packing for a month when I am away one night. This time, I really am going to have to leave the kitchen sink at home!

Sunday, 17 April 2011

A discussion on the benefits of Marathon's

There is one thing which I will unashamably admit – I absolutely love Marathon's and I guess it is something that is almost bordering on addiction. And no – I'm not talking about getting on a pair of running shoes and breaking into more than a fast walk which is known as running – and running for a very long time – 26 miles in fact! 26 miles is roughly the distance between my house and Salisbury Hospital where I go, occasionally, to see my PD Support Nurse James. Noooo – running is not for me as I discovered last year when in a mad moment I enrolled on a beginners running course at Marlborough Running Club – only to be advised about a month later by my two coaches that I would never make a runner – in spite of my best intentions. (I covered this in a blog at the time called “Last One Out, First One Back” and will probably re-publish it in honour of all those who ran the London Marathon today for The Cure Parkinson's Trust (CPT)).

No, what I am talking about is the chocolate variety formerly known as Snikers – the variety that is complete with peanuts and all sorts of other fattening unhealthy things. Hmmm, yummy, yummy, yummy! Marathon's have often staved off an impending attack of the Munchies when I'm out and about, and have forgotten to take something more sensible with me like an Apple and a Banana.

However, whilst I am confined to being a mere spectator, I do appreciate the pain that thousands upon thousands put themselves through to raise money for the hundreds of charitable causes that are out there by running Marathon's which seem to have become part of the British culture. But of worthy note are friends who volunteer to run to raise funds for CPT. Last summer my good friend and fellow school Mum, Karen Carey, ran the Bristol half accompanied by her coach, who also happens to be her husband, Steve Carey. Karen raised a really amazing sum of money for CPT. But at the time I was really worried about her, as a few days before the race Karen came down with a really nasty cold and nearly had to pull out – when I spoke to her on the phone before the race, she could barely talk. But, the famous bulldog spirit that we British seem to be endowed with took hold, and Karen being Karen was determined to do it in spite of feeling absolutely c***!

And here is where a trend seems to be emerging. This year, my old school friend Jo Batting was running in the Marathon to end all Marathon's – the London. I didn't ask her to – I swear! Jo took it upon herself to do this madcap thing, and the first I knew of it was an e-mail from her informing me that she had entered the lottery for a place, and had been successful. Jo had never run a Marathon in her life before, and took on this self-imposed challenge with the spirit of determination which can only be likened to the war-time spirit when our major cities were being bombed night after night by the Luftwaffe in the 2nd World War.

And here, again, there seems to be a trend emerging – like Karen last year, this was this Jo's first ever Marathon, and like Karen last year Jo also ran it with the mother of all colds. Unknown to me, Jo spent Friday and Saturday in bed trying to sleep the cold off, and being hardly able to speak, really didn't know whether she would be able to take part until a few hours before she and her running partner, Robin Waterhouse, were due to set out from home. But, the old Bulldog spirit had got its teeth in to Jo, and she decided to go ahead in what was to be her first, and last, Marathon. It seems that the hours of pounding the country lanes over the last few months where she lives in rural Cambridgeshire have taken their toll on her bones, and Jo is having to hang up her running shoes on medical grounds.

Had I known that Jo was somewhat unwell before she had completed the entire 26 miles, I think I would have tried to persuade her not to run, regardless of this being her first and last Marathon. Maybe that was why Jo didn't let me know? Jo and her running mate Robin went ahead, and they crossed the finish line together in sub-5 hours – 4 hours, 44 minutes and 6 seconds to be absolutely precise. Jo, it transpired, was absolutely determined to finish in under 5 hours as she had wrangled promises out of various friends for extra sponsorship money if she achieved this – way to go Jo! Currently the totaliser is standing at 70% of her target of £2,500 and the money that has been raised will go towards the next phase of trials for GDNF. (If you require further information about this, please go to

Besides owing Jo a huge debt of gratitude for the rest of my days, I would also like to say a huge thank you to Jo's running partner, Robin Waterhouse, for coaching Jo through the winter, for his moral support, and for keeping Jo company as they joined the many thousands taking part in the 2011 London. An equally huge thank you to Jo's husband, Mark, and their children, Simon and Sarah and their many friends, for the support they have given to Jo today and in the lead up to this.

When I spoke to Jo this evening, she was already home. By the sounds of it her running shoes almost had to be surgically removed from her feet as she is now also the proud owner of some rather fetching blood blisters, as well still not feeling too brilliant from her cold. She was in good spirits though, in spite of feeling absolutely cream crackered from running 26 miles on what turned out to be a rather warm day and I don't think Jo was going to leave it too long before retiring to bed via a relaxing bath. She did say that she would probably be asleep before her head hit the pillow!

Jo and I have known each other for many many years, having gone through Prep school and Senior school together in the 1970's (yikes, was it that long ago?) Since leaving school Jo and I have kept in touch, but living in different necks of the wood, so to speak, it is rare that we manage to get together. That said, we are both hoping to go to the Leweston 30 year reunion taking place in Sherborne next month.

Fantastic Jo, I'm really proud of you........

Now, where did I leave that Marathon? Ah yes, in the fridge......

[PS - Having turned on the TV earlier today to see if I could spot Jo and Robin, or any of the Wobbly Runners for that matter in amongst the many thousands, I was somewhat surprised to see my PD Support Nurse, James, being interviewed. James was raising money for AquaAid, in a rather fetching costume I must say. No doubt he will be bearing the brunt of a few dead pan jokes over the course of the next few days and weeks. Anyway, a well done to James and I'm sure he is feeling rather “flushed” with success! (Sorry, really couldn't resist!)]

Monday, 11 April 2011

Training for the Challenge of My Life

I’ve been intending to write this blog for a few weeks now, but life always seemed to get in the way! And, surprise, surprise, it is the middle of the night and here I am at my pc penning this blog as sleep is elusive – yet again!

This afternoon, I decided to get around to doing one of those jobs I never seemed to get round to – power sanding down an old chest of drawers I had purchased for a fiver from a second hand furniture shop about 10 years ago and which has been living in my garage ever since! The chest of drawers in Antonia’s room doesn’t seem to hold much in the way of clothes – and it has got to the stage of needs must or start keeping her clothes in her sister’s room – an intrusion I know would not be welcome. This particular piece of furniture will do the job nicely. However ….. in the course of going mad with the power sander this afternoon to prepare the wood to be painted (so satisfying to strip back all those horrible layers of varnish) I managed to get a massive splinter caught right under my thumb nail – and now my thumb is throbbing and keeping me awake! Of course, I didn’t swear when it happened even though it really hurt – not!

As I said, this particular blog is long overdue, and was replaced by others over the past few weeks. I was reminded I hadn’t done it on reading Claire Perry’s column in our local paper last night, where she wrote that readers can catch up with how my training is going on Claire is my MP, and I had the good fortune to meet up with her a couple of weeks ago to discuss the impact the proposed changes to the Disability Living Allowance will have, amongst other things. She has been a tremendous support to me, for which I will be eternally grateful!

I would also like, at this point, to say a huge Thank You to Andy Weller (Manager) and his staff at the Cotswold Outdoor shop at the Cotswold Water Park for the help that has been given to me in ensuring I have the correct essentials for this walk. 

Since returning from our break in Sweden, I really don’t know where the time has gone to. I blinked and found that my girls have broken up for Easter. Not only that – I’m beginning to panic about my impending 86 mile walk along the Kennet and Avon canal I’ll be doing with Wendy and her son Spencer in about 10 days time. I’ve been going to the gym about 2 or 3 times a week, but try as I might I never seem able to fit the fourth visit in! My training for the walk got off to a bad start at the beginning of the year,10 days away in Sweden meant that I had too long a break from training and getting back in to the routine of going to the gym has been difficult. During and on return from Sweden I was absolutely and utterly cream crackered. Eventually I mentioned this to my GP, blood tests were done, and whilst I am not anaemic they showed that my store of iron was low. So, I’m back on the iron pills for a month. A reasonable explanation is that I have probably not fully recovered from the disasters of last summer when I haemorrhaged following a hysterectomy…….

Thankfully the iron tablets are doing the trick and I’m feeling much better – hence playing silly beggars in the garden this afternoon with the power sander, as well as getting on much better with my sessions at the gym. Last Sunday Wendy, Spencer and I did a 12 mile walk along the route which we’ll be taking as a practice to make sure I was up to the challenge. By the end of it I was feeling extremely pleased with myself – apart from the last mile which was absolute torture I managed to keep up a reasonable pace. And – even better – we managed to talk practically the whole way! By my reckoning we averaged about 3 miles an hour – walking that is, not talking! Not bad for a parkie chick who is rapidly approaching her 50th birthday! This week I will endeavour to get to the gym 4 times, but as I’ll be on my last round of Lee Silverman voice therapy sessions as well as having the girls at home – I have a feeling that time is going to disappear in a flash. Rightly or wrongly, I have decided to make my last session at the gym next Sunday 17th April, if I can manage it – so that I can get some decent rest before taking on the challenge of my life.

So, why am I doing this mad-cap walk? I guess really it’s my fault! I decided to put Tom Isaacs book “Shake Well Before Use” on my book groups reading list for 2010.  Wendy, one of my book group buddies, was so inspired by Tom’s story that she decided she wanted to do something similar, but on a much smaller scale. She mentioned this to me, I (like the idiot I am) agreed and the rest you already know. Wendy and Spencer are walking for Diabetes UK as Wendy’s husband and younger son are both insulin dependent. I am walking for Tom’s charity Cure Parkinson’s Trust (CPT), with the intention that any money raised will go straight to the next trial phase of GDNF.

I am going to take a break in my ramblings about walking (and talking) to mention my old school friend, Jo Batting (aka “Piglet” when we were at school!). Jo, bless her, in a probably equally weak moment at some point last year, decided to enter the lottery for places in the 2011 London Marathon and succeeded. She is running to raise money for CPT, but sadly this will be her first, and last, marathon, as she has been advised by her doctor that running is not doing her joints any good – and I suspect is probably causing her a fair amount of pain. Jo, along with other old school friends, has been a tremendous support to me, and I wish her God speed next Sunday. Hopefully, she and her running partner will manage to meet up with Bryn and his band of runners, and I have put Jo and Bryn in touch with each other.

Bryn has written extensively about GDNF – and much better than I will ever be able to. So, I’m not going to go in to detail, apart from to say that GDNF has great potential in reversing the effects of Parkinson’s, and to my thinking may well be the first almighty step on the ladder to providing a cure for Parkinson’s – but only if the next trial phase can go ahead. CPT are fully behind this treatment, and are having a massive fund raising campaign to the tune of £500k by the end of May 2011. As part of this campaign, they are going out to the business community. Accompanying the literature will be a short film made in Bristol last Friday presenting the different aspects – Science, Charity and Patient, featuring Tom, Jon Stamford (Slice of Life), and myself. After the filming, I had the pleasure to meet Professor Gill who is working hard to bring GDNF out of the laboratory and on to the operating table.

As you may well realise, Parkinson’s doesn’t feature in my plans for the future – without treatment such as GDNF those plans won’t become reality. If you wish to donate to start closing that £500k shortfall, please select one of the links below. and search for The Cure Parkinson’s Trust

Thursday, 7 April 2011

Sherborne – again!

Having spent the past 30 years of my life studiously avoiding Sherborne, I find myself back there not just once, but twice within a month. It’s not that I dislike Sherborne – it is in fact a very pretty town, in an antiquated, old fashioned sort of way. It's the town of tea shops, or certainly used to be, and a bewildering number of privately-owned shops selling all sorts of curiosities you would never find anywhere else. As for its residents, it is the original “dormitory town” in that for many years it has boasted 4 independent boarding schools – possibly 5 – plus the usual state schools.

Sherborne primarily holds for me a lot of memories from my childhood, not all of them terribly happy ones I must admit. I didn’t live there, my best friend from my school years did though and I spent 9 long years there until I reached 16, when I was granted leave by my father to escape. As you will have guessed by now, Sherborne is the town where my parents chose to send me to be educated, following in my elder sister’s footsteps – sort of!  My father, being a serving Officer in Her Majesty’s Forces at the time, was often posted abroad and boarding school provided the stability which the peripatetic lifestyle of the armed forces couldn’t fulfil. Well, that was the intention anyway. Sadly, the year group I ended up in was one of the worst years in the history of the school for bullying. But I digress.

My parents had originally intended to send me and my sister to my mother’s old school at Effingham in the leafy county of Surrey, but as both her sisters were there as Catholic nuns they decided it wouldn’t be terribly fair on any of us, so they chose the sister convent located in Sherborne. 

However ……  as I approached my secondary school years, the Order to which my dear sainted aunts belonged decided to “post” the elder of the two – Helen – or Mother Clare as she was publicly known, to my school in Sherborne. There then ensued 5 years of what must have seemed like torture to my aunt. Having been instructed by my parents that I was not to let on to anyone who Mother Clare was, word got out pretty much straight away before I had even a chance to say “Boo”, and for 5 years I was constantly asked the question “What’s Mother Clare’s real name?” I never let on, except to my closest friends. 

I did rebel against my poor aunt though, and she certainly never showed any favouritism, or at least she tried not to! What those 5 years did give us though was a closeness that was brought to an abrupt end by an aggressive form of breast cancer in the mid-1980’s, and I still go through phases where I miss my Aunt’s advice and wisdom. My other aunt – Sue – or Sister Catherine, meanwhile remained at Effingham until she passed away exactly 20 years later, to the day, from the same illness. It was not long after Aunt Sue passed away that my symptoms of Parkinson’s started – at the time I didn’t register what they were, having attributed the twitchy little finger to spending too much time at the keyboard, and the sleepless nights to a lifelong affliction of chronic insomnia, normally brought on by stress.

These days both schools are run by members of the lay community and have retained their Catholic status. The dwindling population of aging nuns from both Convents are all now amalgamated at one site in the centre of Sherborne town. Two of those nuns are Sister John and Sister Francis, who were originally at Effingham, then at Sherborne, and I have known them both all my life. At times they almost seemed to be part of our extended family, especially as my sister, brother and I used to spend 2 weeks of our summer holidays every year at Effingham, having pretty much free rein to do as we pleased. One memory which sticks in my mind above all others, was that every year, or so it seemed, Sister John would pile us all in to the back of a Landrover, and take off at breakneck speed down the lanes to see the “Sound of Music”, which was inevitably showing at a local cinema. Oh happy days! When I married my husband in 1985, Sister John came to our wedding along with Aunt Sue – unfortunately Aunt Helen was too ill to make the journey. After Aunt Sue passed away, I kept in touch with Sister John, primarily by letter.

So why return twice to a town in rural Dorset which holds so many memories? And why return twice within a month? Simple – we have friends who live about 5 miles from the town, and we spent a lovely weekend with them at the beginning of March – a weekend that was postponed twice from last summer! (The original postponement was because of post-operative complications following a hysterectomy, which ended up with my spending 5 days in Dorchester hospital, and then postponed again from earlier this year for a myriad of reasons.) During our weekend with our friends, I returned to the site of what had been the Junior section of my old school – which is now divided up in to a number of private apartments, with housing built on the playing field behind. At the time I debated whether to knock on the door of the terraced house which comprises what remains of St Antony’s Convent, where the nuns now live, but I decided to leave that for another day – another day where I would first forewarn the good ladies rather than pitch up on their doorstep unannounced with two children, husband and friends in tow. But that day has come around somewhat sooner than I anticipated.

Later on today I return to Sherborne, this time on my own, and this time for the funeral of Sister John, who passed away at the age of 88 a couple of weeks ago.  It’s time for me to go back to Sherborne, it’s time for me to pay my last respects to a lovely lady.

Requiescant in pace Sister John.

Friday, 1 April 2011

Where's Superman when you need him?

This is not the blog I had in mind, and it comes at the end of a terrible few weeks both local to where I live and internationally. It has been unlike any that I have ever known, with the exception of the 9/11 bombings.
A week ago a 6 year old boy and his mother were hit by a bus as they walked to school in a village near to where I live. The terrible accident was witnessed by a friend of mine. Sadly the little boy lost his life as a result of head injuries whilst his mother sustained major injuries. My friend was courageous and stayed with the mum who was trapped for 2 hours whilst the emergency services worked to free her. To my friend, who I know is traumatised by this, I say "Courage, you will get through this". To the family and friends who have lost a child so young, words fail me. What words can I say to people I don't know whose world has been turned upside-down that will lessen the pain, shock and grief they are going through? [The little boy was laid to rest on 2nd April, my thoughts and prayers are with his parents and sister.]

And like everyone else I can't help but be horrified at the terrible destruction mother nature has wrought upon the people of both Christchurch NZ and Japan. It has truly been the stuff of an American blockbuster movie, but sadly this is no such blockbuster. This is real life and real human beings have suffered terrible hardship. If the American blockbuster movies were real, Superman would have appeared by now to save the mother who was swept away by the advancing tsunami as they raced to cross a road so that she and her children could reach a place of safety. If the American blockbuster movies were real, Superman would have appeared by now and whipped up an almighty funnel of sea water and directed it at the Japanese nuclear power plant headed towards meltdown. If the American blockbuster movies were real, Superman would have appeared out of nowhere with muscles bulging and cape flowing to stop the earth moving in the way it did on that fateful day. Superman would have prevented one of the worst earthquakes ever recorded with the result of whole towns being wiped off the face of the earth and thousands loosing their lives. He would have prevented the terrible damage done to the beautiful city of Christchurch NZ, a few weeks before. My heart truly goes out to those who have lost their loved ones. I truly do feel for those who were already suffering hardship in the form of chronic disabling ill health such as Parkinson's or MS, to then loose everything as the earth moved and the tsunami struck. The real Supermen and Superwomen of the 21st Century are those fighting to stop the biggest nuclear meltdown in history. They have put their own lives at risk to save the lives of thousands of people. I just hope their valiant efforts are adequately recognised and rewarded by the Japanese government.