Tuesday, November 4, 2014

Onwards and upwards

I know I've only just finished the last marathon in my 2014 challenge for ARUK but I'm starting my next challenge straight away.

What, no rest to regroup and recover?

No, this time it's extra special. You see it's 10 years to the month that I first got in touch with ARUK to learn more about mum's diagnosis of 'vascular dementia'.

But there are many more 10th anniversaries:
  • In October 2004 I completed my first ever marathon on inadequate training, whilst nursing an injury, and I've copied my race report below * so you can read how not to approach a marathon!
  • In December, on Christmas Eve 2004  mum went into the nursing home for the final months of her life
  • In March 2005 mum died
  • In April 2005 I ran my first London marathon
When I set out on my journey to speak out about dementia I never once thought I'd still be doing it 10 years later, but there is still more to do. I never dreamt that I'd have run 38 marathons in that time either. You can read about my next challenge on my latest fund-raising page here. I reckon I've got a few more marathons left in my legs before arthritis takes over completely!

So before I let you see 'the marathon report of shame' here's what I did this morning to kick off my fund-raising, the Beckley 10k. I ran the first ever race there back in 2005 and got a trophy for being first lady out of 7 in my age group in a time of 58:36. This time I went out just to enjoy the experience without the pressure of beating a time and I even ran without my watch,  just running at a comfortable pace. I wasn't expecting a fast time as it's only a week since the Beachy Head marathon and my hamstrings were both twanging on the downhill sections so I was delighted to finish in 57:23 which was a nice surprise.

It's a well organised race with friendly marshalls and they give you cake, beer and apples at the finish. What's not to like? Well maybe the hills aren't to everyones liking but apart from them it's a great little event with about 150 runners taking part.

This year they'd had a special medal made and I love it:

Amazingly I also got another trophy but I'd left before they were given out! I'll show a photo of it when I collect it.

There's more knitting and crochet stuff to update but I'm a bit busy getting ready for the Launch of Join Dementia Research at the moment so that will have to wait. In the meantime may I present the write-up of my first ever marathon in October 2004:

*Loch Ness marathon 2004 (The marathon of shame, or how not to run a marathon with an injury but if you feel you must then you'll understand the consequences better!) 


As this piece was originally for the Runner's World website there are lots of strange names in this report so don't be alarmed as we all use nicknames!

As a bit of running background:

I had been running for 2 years but had never gone over the 1/2 marathon distance, 13.2 miles, but I was so upset by what was happening to my mum in the latter stages of dementia that I wanted to run a marathon just for her and for me. I can't explain it any better than that; I just felt I had to do it. We had to arrange a full-time carer to come and take care of her for the weekend whilst we were away (which was very traumatic) so I also spent most of my time worrying that she was OK.

Of course, as I had very limited time to train I increased my mileage far too quickly and picked up an injury. Even the magic powers of Physiotherapy and the ministrations of Mary Massage Lady couldn't mend me in time for the marathon but I refused to pull out. This report shows the consequences of that decision!

Mike and I arrived at the stadium nice and early so I could get on the first coach. Nessie told us that this one stopped by the portaloos last year and I always need to go beforehand! I saw Nessie and Freefall and sat next to a nice young man called David who was hoping to go sub 4 hours (I hope he managed it). It was quite exciting being in a convoy of coaches with a police escort and the journey passed quickly. Unfortunately the coach went right past the portaloos and there was a mad scramble to get into a queue. Why did I pick the one that took forever to move?! Having relieved myself I did some roadside stretches and then proceeded to the rear of the field so that I wouldn’t be tempted to go off too quickly. Saw Shades, Debbo, Freefall, JaneM. It was quite chilly but JaneM said I would be too hot with my gilet on. I panicked and wondered if I’d made a mistake but rationalised that the Scots are much tougher then me. As it happens, I was very grateful for the extra warmth later on. Then we were off.

I love the feeling when a race starts; all that anticipation and excitement and I felt really good. I was aiming for 11 minute miles. First mile was 10:30, Shades went past and asked if I was OK. I was. Mile 2 was 10:40, mile 3 10:50, mile 4 11:00. I settled into my pace feeling strong and comfortable. The uphills were OK, in fact they were similar to my training routes. A couple of the downhills were steeper than I’d anticipated but my knee seemed to be holding up OK. I took on water at mile 6 and walked a few steps whilst I drank it. Meerkat had advised me to break the distance down into sections so it didn’t seem as scary so I was just thinking about completing the next mile. I was enjoying the run enormously and the scenery was breathtaking. By mile 12 I was feeling confident. I took some sports drink and headed off for the water station at 12.5 where I walked a few paces to drink. Checked my watch and it said 2:12. Fantastic, I thought, I should get in under 5 hours if I keep this up. This seemed like a good time for a loo break as there was noone around so I nipped behind a bush. 

I started running again and a searing pain shot up the side of my right knee. I stopped, stretched and tried again. Agony. Nooooooooooo!!!!!! I shouted at the empty road. I stretched, I tried running, the pain shot up my leg. This wasn’t happening, it couldn’t be, it would be alright again if I just walked for a while. So I walked. I use the term ‘walked’ loosely as it was actually a slow stiff-legged limp. Debbo went past and asked if I was OK. I explained I was just taking a walk break because my ITB had tightened. She said I should be resting in bed. I watched her disappear up the hill. A few minutes later JaneM went past. I crossed the 1/2 way mark in 2:29. It had taken me 15 minutes to walk 1/2 a mile.

I stretched again and tried to run. It was agony and I couldn’t manage a step. When this has happened before I’ve found that I could still walk and that the stiffness wore off after a few miles. But I was only 1/2 way round and although I’m quite happy to run 13 miles, I’ve never walked that distance. My hubby had said that if my knee was too bad to continue then I should just say ‘Sh1t, c’est la vie’ and start planning the next marathon attempt. But I didn’t want to stop. There was so much of me invested in this marathon. It was the culmination of a very eventful and traumatic year. How could I just give up? This was for mum an for me. I stumbled on. 

The next mile was full of self pity and doubt. Sometimes I sobbed quietly to myself feeling so small and alone in a strange place miles from anywhere. Thankfully this phase didn’t last long (you’re probably wanting to give me a good slap to snap me out of this!!!) and I thought about John ‘The Penguin’ Bingham’s book that I’ve just read called ‘no need for speed’. In it he talks about how your time and personal goals are of no importance to anyone but you. The minute I let go of my 5 hour dream I was free to get on with what I had to do. It was a liberating experience and I found that inner strength I needed.

I kept repeating Little Fat Welshman’s mantra ‘pain is temporary, pride is forever’ as I limped ever onwards. At the mile 15.5 water station, the ambulance man hovvered like a vulcture. I told him I was OK and stomped off in a determined manner. At mile 16 I passed a supervet who was obviously struggling. I checked he was OK then started off up the long hill. I suddenly realised that I was walking easier (well, less stiffly) and had started to look at the scenery again. I marched onwards feeling more determined with each step. I made up marching songs in my head - Who’s that Redhead looking strong?, Got a knee that’s gone so wrong, 1,2,3,4 etc etc. I hadn’t looked at my watch for a while so I had a sneaky peak and worked out that if I maintained a brisk walking pace then I should come in under 6 hours. I switched my mobile on to let Mike know I was going to be late but there was no signal. I worried that he’d be worrying about me. He was.

A couple of guys passed by on motorbikes shouting ‘I see ya baby’ then they came back again shouting ‘shakin’ that ar$e’. I giggled. They came alongside and asked what I was doing and then wished me luck. As a parting gesture one of them stood up and did a big wiggle as he rode off. I waved and they were gone. That was around mile 17 and there were still 9 miles to go. I managed to contact my hubby who was very upset by my demise. I realised that I was smiling now. I also realised that I was going to make it.

The police cars kept flashing past and I smiled and waved at them. A very dishy marshall wearing black leather rode his motorbike alongside me for a while and chatted. Then he was gone until his next ride by. I thought it was nice that they kept checking up on us stragglers. Then I started to pass other people who were struggling. Each fighting their own personal battles. There was the lady who was limping up the hill accompanied by her partner on his bike. We nodded encouragement to eachother but I suspect she didn’t make it. Then there was the man and woman who ran for 5 paces then walked for 10, the young girl who was running so slowly that she barely moved forward, the guy over here from Australia on holiday and many others.......

I kept catching up with the ambulance which was by then carrying an assortment of runners who couldn't continue. Each time they asked me if I was OK and wanted a lift; on one occasion they tried to entice me into the ambulance with a nice cup of tea. LOL!

Suddenly I was at mile 21 and the traffic started coming past. Some people waved and shouted encouragement, others just stared. I smiled the biggest smile ever. By mile 23 other runners were coming away from the stadium wearing their medals. They clapped and cheered me on. How generous, I thought. At mile 25 I met up with 2 men who had passed me earlier, both walking, or rather hobbling by then. We joined ranks and chatted. The stadium was deathly slient now and I joked that there would only be my hubby there waiting proudly to film his wife crossing the finish line. We all agreed that we had to run over the finish line so as we rounded the corner into the stadium the 3 of us lurched into a painful limping jog. I was right; my lovely hubby was there to film us, along with a contingent of forumites who had waited around to offer support to us stragglers. We crossed the line in 6:00:03 but my final chip time was 5:58:59 so I just beat the 6 hour mark. Mike could not have been more proud if I had run the course in 3 hours!

I waited to see Nessie come in a few minutes later. As she stood with her supporters (sorry Nessie I don’t know who they were), she said that it had been really hard. The man said simply ‘But you did it, darling, you still did it’. That summed it up for me and I am humbled to think that many people go through the sort of experience I had each time they take part in a marathon. 

It’s jolly hard at the back of the pack, but I'll be back.

The End!!

Wednesday, October 29, 2014

More photos from Beachy Head

In my last post I said there was a funny story involving Ant from sussexsportphotography.com and it happened here which I think is around Jevington. Look at me leading the pack - I expect they all overtook me shortly after that!

I'll let the captions tell the story:

I've just spotted Ant crouching by the side of the path and he's clicking away at me like one of the paparazzi
He continued to click away and apologised to the 2 men behind saying "sorry guys, she's famous" (silly boy!)

As you'd expect they then asked why and he said " she used to be a Guinness World Record holder" and I shouted back "still am actually!"

Waving bye-bye to the naughty Ant!
This of course lead to a chat with the 2 men who asked if Ant was my official photographer who follows me around. 


I managed to keep my face straight and replied that yes indeed he's always around when I'm running (tee hee!) before I said that actually Ant and his team spend hours out and about at races taking photos of runners and that they should buy his photos. They then pushed on ahead of me. I get overtaken on all the downhills and flat bits but then I often overtake the same people on the uphill bits! I thought I wouldn't see them again but I went past them around 18 miles when they were fading a bit.

Ant's team were out and about all around the route and they really deserve medals for their endurance. They have to sit still in one place for hours upon end; the time limit is 9 hours so there are walkers coming in long after the runners have finished. You can imagine how tough that can be on a cold, wet and windy day. Top marks to all your team Ant xxx.

One of the slightly flinty downhill bits - not sure where it was, they all look the same after a while

Behind me you can see the the Litlington White Horse by the Cuckmere valley

In the next few you'll see Belle Tout in the background which I wrote about in my previous post. The good thing is that it means I was near the finish, well a couple of miles perhaps, and had scaled the heights of the 7 Sisters. The 2 men in front had been walking all the way up the hill and then started running and posing for Ant who had moved to this new position.

Ant used this photo in his blog captioned 'Suzie (sp!) receives a guard of honour'. The photo below that one on his blog shows my friend Ruth lying on her back at the same spot. He also took loads of photos of her struggling to her feet!

The men then both did  a Mobot and Ant commented they were the first to do one that day. As I'd never done one before I decided I would too.

I'm gonna do one too

I Mobot!

I did it!

"The hills are alive………"

Bye Ant and thanks

In this next two I really am on the home straight. It's a flat bit for a while and then it goes down hill again. To my left in the first photo are a couple of walkers who I chatted with for a few minutes. They spotted my ARUK vest and wanted to talk about a new initiative to pay GPs £55 for every diagnosis of dementia. We all agreed that the idea of incentivising something that should be part of good practice is just wrong - good GPs will be doing it anyway and the bad ones will just make a diagnosis of dementia without checking that the symptoms presented relate to dementia and could not be anything else.  I would much rather the money be used for research into the disease and it was interesting to get the reaction of people who had no experience of dementia in their lives.

So here I am, sprinting (ish) towards the finish line having just come very carefully down the hill we went up at the start. It was so very slippery and I hate going downhill anyway so I was extra careful.

Make no mistake, this is a tough trail marathon and certainly not for the faint-hearted, but it still remains my favourite off-road marathon. There is such wonderful camaraderie amongst participants and people come back year after year.

So that is definitely the end of my 2014 challenge. Watch out for the launch of my next one at the start of November.

Monday, October 27, 2014

Marathon 38, the end of my 2014 Challenge for Alzheimer's Research UK

Don't worry though, there's another challenge about to start!

But first let's get up to date with the last part of my 2014 challenge, the Beachy Head marathon, my favourite trail marathon, with the Three Forts Challenge a close second. I love running up on the South Downs as the views are spectacular if the weather is good, which it certainly was yesterday. Not too hot, slightly overcast and with just the gentlest of breezes. The only slight issue was that the ground was rather slippery in parts because of the heavy rain during the week but that was a minor niggle.

My right hamstring is still rather tight and I knew it wasn't going to enjoy some of the steeper descents and I wasn't wrong! No worries though as I wasn't chasing a fast time, I just wanted to get round in one piece and enjoy the day.

I haven't got any photos of me yet from Sussexsportphotography.com but I have a funny story to tell when Ant sends them through!

I'll let the photos I took en-route speak for themselves as they give a good feel of the route and the atmosphere.

A moody sky over the sea 
An ambulance positioned at the foot of the first hill!

The registration area where you collected your timing chip

The obligatory queue for the toilets!
The inflatable 'start' line with mats that you have to run over to activate your race timing chip (attached to you ankle)

There are lots more photos of the route in my post from 2012 where I took a loads more photos than I did yesterday.

The piper at the top of the first hill - this year everyone wanted to have their photo taken with him

This lady wanted a better view so climbed up onto the monument! - she wasn't a runner

Looking back over Eastbourne

The mud on one of the early slopes was very slippery!

The expansive views are so beautiful they take your breath away

Look how tiny those runners look in the landscape

The sun popped out for a while and some of the paths dried up. This one is mostly chalk with loose flints on top, which can cause you to trip, so sensible runners chose the path along the grass
There are lots of feed stations en-route where you can get a cup of water and a biscuit but the one around mile 16 is special - they have cups of tea, squash, sausage rolls (not for us vegetarians of course) and hot cross buns. My friend's husband took a great photo of me stuffing my face with a hot cross bun on my first ever Beachy marathon back in 2006, just before I started my blog, but I can't find it (thankfully!). There is always a band there too and this year they were very good. I took a short video of it but I can't get it to load on here.

The reason it's a special feed station; they're preparing you for the toughest part of the course!

Refreshed by a cup of tea and food we trekked up this grassy bank which was very slippery - it's hard to show just how steep that bit is

After the grassy slope we go downhill, across a flat bit, over a bridge and then wallop, it's the first long set of steps, but there are much steeper and longer ones to come……..

…and here they are. I turned around about 1/2 way up and shouted "smile please". I don't think the man on the  right felt like smiling though!

After scaling the steps we climb over a low stone wall and run down a really steep grassy slope to go past Cuckmere Haven
This is the view when at the bottom of the first hill

This is the view, using the same zoom, but from the top of the hill! I wish I could have captured the sound of the sea crashing against the shoreline (which is pebbles) as it was magnificent

A side view of one of the 7 Sisters

Only another 3 Sisters to go. On the top of the last one you can see the Belle tout lighthouse which is famous for being featured in a TV series "the Life and Times of a She Devil' many years ago and for having been moved further back from the edge of the cliffs (yes really!) because of coastal erosion. The other thing of note is the row of houses just before there as last year one of them had to be demolished and the remainder repaired and strengthened, again due to coastal erosion you can read about it here

People have been warned to stay away from the edge of the cliffs because they are unstable. Last time I ran this there wasn't any chalk visible along the top of the cliffs

A group of twitchers waiting for a bird to appear from the bushes

You can tell how windy it gets up there from the growth of this tree

Heading back down the hill to the finish line

I think this photo gives a better feel of just how steep that blimming hill is. I picked my way down by going sideways and very slowly!

This van positioned just after the finish line made me smile with it's logo copying that of the post office
As I haven't got a finish line photo yet I'll share this one from 2006 which I think really captures the spirit of it:

Heading for the finish line with Jan in 2006, my first Beachy Head marathon. We ran half of it together and it was such great fun

The last marathon medal in my 2014 challenge

More photos to follow soon.

Wednesday, October 22, 2014

At last, after many years………….

……we've finally launched a live test of Join dementia research, in the North & West London areas, where people can register their interest in taking part in dementia research. You can click on the link above to see what it's all about. You can also read more about it here on ARUK's dementia blog.

I've been going on about the need for something like this ever since my mum died back in 2005. For years it felt as if I was banging my head against a brick wall but finally we seem to have loosened a brick or two and things have moved forward.

I first became interested in this project back in 2009 after having attended the Ministerial summit on dementia when 2 of the issues I was passionate about were highlighted namely:
  1. the need for a register linking patients with dementia to researchers in the field
  2. dementia research charities forging closer links with the pharmaceutical industry

At the summit I met follower campaigners and also a representative of DeNDRoN (dementia and neurodegenerative diseases research network) who I've written about before. For a while I heard nothing more about it until I was invited to represent Alzheimer's Research uk at a meeting to discuss the way forward. There are also representatives of the Alzheimers Society. Both ARUK and the Alzheimer's Society will be manning the helplines for Join dementia research.

Originally the project was being developed under the working title of the RAFT register i.e. Recruitment And Feasibility Tool. That title really didn't appeal to anyone except the technical development team so one of the first things we did was brainstorm a more user friendly name for it! I won't bore you with the details, the restrictions etc, suffice to say it felt like pulling teeth and well done to everyone who finally settled on 'Join dementia research' which conveys exactly the right message.

After a few meetings the project stalled but then last year it all started to get very exciting with software development and strategy meetings.

The start of this year saw many of us involved in a conclave to discuss the way the system worked and iron out any issues in the development phase before the system could go 'live'. This involved scrutinising every bit of how the system worked, e.g. was it user-friendly, were the right questions asked, did it work well from the researchers point of view, how did it look from the user's viewpoint, etc etc. It wasn't something you could just look at quickly and agree, you had to really concentrate and I spent ages each week going back over the test screens to see if all the links worked and the wording was easy to understand.

Then back in July the system went into live trials just in the one region to iron out any teething problems before it went across all regions.

At the moment there are already 569 registrations which is absolutely brilliant!

Last week I went into London and met some new recruits who have volunteered to help spread the word in they respective regions. The event was hosted by Adam Smith, DeNDRoN programme manager seen here talking with Julia Simister, Research Delivery Manager DeNDRoN for the Kent, Surrey and Sussex region. I'm hoping we'll be joining forces to help spread the word when the system gives across all regions.


After we'd all introduced ourselves, Adam started by giving an outline of what the service is all about, the benefits, how it will be implemented in the future and what the role of Champions will be. I must note that we Champions are not employed by them and our work is done on a purely voluntary basis with just our travel expenses reimbursed.

Then there was a little slot entitled 'Campaign planning - a personal journey' which was my cue. I'd received an email late the previous evening asking if I would mind telling my mum's story, my reasons for supporting Join dementia research and what I've done to publicise the work of Alzheimer's Research UK etc. Thankfully I'm done this so many times before that I'm quite comfortable standing up and talking about it, although I do sometimes get a bit teary.

I'd taken along my presentation slides from the Alzheimer's Show back in May as all the points on my first slide sum up why I've been supporting ARUK all these years. I did, however, temper down some of mum's story and missed out the really dreadful last couple of years because there were several people there who are living with some form of dementia themselves. During the lunch break many people cam ever to thank me and say that they identified with many of the things I'd said about how the disease progresses and to share their own experiences.

There were 4 tables with about 6 people on each, some have been involved with Join dementia Research for a while but other were new recruits and had travelled a long way to be present, which was wonderful.

After lunch there was some Media training giving tips on radio and TV interviews. For some, this was their first experience of interacting in this way but everyone did really well. Even though I've been a Media volunteer for ARUK for 10 years now there's always something you can pick up from this sort of session.

It was interesting that Peter, a fellow Champion seen seated at the front of the photo below, objected to references of people "suffering" from dementia/Alzheimer's. He prefers the term "living with" as he has a form of dementia that has allowed him to live happily with his condition for many years and said that he doesn't suffer at all. However, in my mum's case I know for sure that she did indeed suffer as she often remarked that she was tormented by not being able to remember things and that nothing made any sense any more. She was especially upset when she realised that Mike and I had to do so much for her. For someone as bright and intelligent as my mum it was indeed a torment.

A few of us were not able to stay for the whole afternoon but the photo below shows most of those attending.

As I was dashing off to catch my train, Zara & her camera caught me in the corridor. I must learn how to put my badge on straight!

So what happens next?

We make plans! How can we maximise the publicity for Join dementia research? How and by whom will the message be delivered? Who do we target? (e.g. local Care groups, Memory Clinic, WI groups, Doctors) How can each of use our unique skills to spread the word? This is so exciting and I am delighted to be a part of it.

Together we will make a difference.