Showing posts with label GDNF. Show all posts
Showing posts with label GDNF. Show all posts

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.

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 wobblywilliams.com. 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.

www.justgiving.com and search for The Cure Parkinson’s Trust