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.

Tuesday, October 14, 2014

What a weekend - Part 2

The Knitting and Stitching Show 2014

I was so excited to be going to this show as I'd never been before. It was really rather last minute and lucky that my neighbour Gill, who had already booked tickets to visit with her friend Julie, phoned to say they had spaces left on the coach and would I like to come. 

I've been invited by a friend before but because the coach deals are mostly on the Sunday I hadn't been available because I was off running a marathon somewhere. This year was different as I was running the Fowlmead Challenge on the Saturday. Fantastic. 

The only downside was that I left poor Mike alone all weekend and even though he was absolutely fine about me going off for 2 jaunts (I checked before I agreed to go) I set about 'guilt baking' a couple of his favourite things on Thursday to make up for it so his tummy was very happy about it (lasagne for our evening meal, cheese, onion and potato pies for his lunch, plus Pear and almond tart for pudding and he had football on the TV on Sunday but I can't claim any part in that!).

We all assembled in the car park of a nearby village. I wore my Oregon cardigan (which I still don't like   - I think it's mostly the old-fashioned shape I don't like) which got lots of lovely comments as I was walking round the show. Gill knits and does other crafts, Julie is a keen knitter too and used to teach classes for Rowan. She is an expert needlewoman and you can just see the bottom of her cardigan above my over-excited fingers. Her sister and daughter, both knitters, made up our little group.

They told me that last year they didn't get to the show until about 12pm because the driver set out late and then stopped off at a service station en-route, and then they had to be back on the coach by 4pm which made it all rather rushed. Thankfully, this year the driver arrived and departed promptly and although the journey was 2.5 hours we still arrived by 11:30am.

On a clear day the view must be lovely - that's the Shard on the right hand side

Once inside, Julie went off to find the picnic area and we agreed to meet up at 1pm to eat our lunch. We'd all taken a packed lunch and a drink because Julie and Gill knew how busy it was going to be  whereas I had no idea. I was soon to find out just how busy it could get - it was like trying to fight your way through the first day of the sales! I'd made a note of all the stands I really wanted to visit but once inside I was just swept along in the crowd.

The first thing I saw as we entered the building was this lovely pergola decorated with knitted and crochet flowers.

I bravely announced "I'm not going to buy any yarn as I have far too much in my stash already" but I know you'll be laughing as you read that load of nonsense! For the 1.5 hours before lunch I just familiarised myself with the layout and made a mental note of where I wanted to go back to. When we met up everyone was carrying bags full of yarn whereas I had a modest purchase of some braid, for a crazy patchwork cushion, and some beads. My self-righteous smile was soon wiped off my face so don't worry.

My photos are not in any particular order and I tried to take them when there weren't too many people around.

Seeing the 2014 crochet club 'blanket' on Jane's stand I could see why some people had been disappointed. I know that sounds mean but although there are some lovely elements to it I agree with the view that the components don't gel together very well.

The Stylecraft stand was heaving and Lucy's blanket yarn packs were flying off the shelves!

A sales assistant gave me one of these pretty cards with Lucy's details on. I looked out for her but I didn't spot her and I wondered if she'd had to cancel so she could go and visit her mum who's poorly. Hope your mum's OK Lucy.

I loved seeing the work of design students and these felted wool dresses were stunning (that green one is just my colour!)

These felted pieces screamed "touch me!" but I had to resist. My favourite is the 3rd from the left.

I spent a while studying the tapestry weaving on the British Tapestry Group's stand

This is Lindsay Taylor, a very talented  artist who works on mostly three dimensional forms, and the first thing I spotted on her stand were her fab tights. Then I studied her  pieces which were inspired by the damage done to wildlife by discarded plastic products and I was hooked as that it a cause close to my heart. If you click on the link to her website you can find some of the pieces in her portfolio under the 'installations' section.

The piece below relates to an article that hit the headlines a while back about the amount of rubbish that was found inside a dead seagull. It was a tangle of plastic bottle tops, ring pulls, plastic netting and all other sorts of discarded rubbish. 

When the news was released I was reading a book entitled Moby Duck by Donovan Hohn who made it his mission to highlight the way our rubbish travels across the ocean and damages wildlife. There was a really good review of the book here in the Guardian

We chatted for a while because I have grave concerns about those Chinese lanterns that people release at celebrations. Yes, they do look so pretty as they float off into the night sky but what happens to their remains? They come back down to earth, that's what, and the smouldering remains have been responsible for fires in barns and causing choking, and even death, in farm animals when ingested accidentally whist grazing.  You can read more about them here in a report by the BBC team at Countryfile.

The next batch are from another area displaying the work of various textile artists.

Glorious textures on the cushions & a fabulous felted coat in plummy tomes
This next wonderful creation is by Denise Salway aka 'The Knitting Witch'. She was delighted when I told her how much I loved her coat and I promised I'd give her a mention on here. I remembered reading about her creation of lifelike figures on deramores blog earlier this year and thinking wow!  The Hobbit coat, shown below, is truly amazing but there are some even better photos of it and her characters from Tolkien here on flickr. Can you see the little Gollum hiding in the sleeve and Smaug on the back?

In the same area I met up with Georgina Mae and was captivated by this innovative knitted top she's created. I'd love to have seen it being worn as it must look stunning. There is a knitted under layer and then she's used those loom bands that children use to make bracelets etc as an overlay and it is so beautiful. What a refreshing display there was in that area.

OK now for the yarn I wasn't going to buy. You knew I would though didn't you!

This little quartet of Koigu loveliness is to make a seed stitch shawl. I've seen their version before and resisted it but today I saw all the other colours I could choose and well, you can see what happened!

I did try to resist the massive pile of discounted packets of yarn from Black Sheep Wools, I really did, but in the end resistance was indeed futile!

The 2 packets below of Rowan Summerspun, on the left, (I couldn't help it as those are my summery colours and the top I make will match my shorts) and Rowan Cotton Glace (it's a dirty greeny olive colour and will make the perfect background colour for 'Celeste', the stripy cardigan by Martin Storey I was lusting after in Rowan 55). I already have a bright green summer cardigan so fancied something more muted for the background.

Repeat after me; "Next year I will only knit using my stash……………"

Tomorrow I'm going into London for an exiting meeting with DeNDRoN after which I'm hoping I'll be able to share some very exciting news about a project I've been involved in for so many years.

Monday, October 13, 2014

What a weekend! - part 1

I invariably seem to want to put an exclamation mark at the end of the title to my posts don't I! I can't help it though as there have been so many exciting things happening this year. This weekend was no exception.

On Saturday I got another marathon medal (and what a beauty it is too):

Then on Sunday I headed off to this:

But I'm getting ahead of myself so I'll start with my latest marathon.

Marathon number 37, the Fowlmead Challenge

I was very excited about this event for 2 reasons, it was a new event organised by Traviss Willcox and I had never done one of his events before. Traviss is a very accomplished runner himself, having run over 300 marathons, and he organises events in unusual places and gives fabulous looking medals together with the best goody bag I have ever received. 

The other thing you should know about Traviss is that he's a jolly nice chap with no airs and graces even though he holds the Guinness World Record for the most marathons completed in one year male (114 in 2011 and he only started running in 2009!) and he's also completed 52 marathons each year for the last 3 years.

Having had the warmest September on record with scant rainfall, October has started with rain, rain and more rain so I wasn't surprised when the weather forecast for Saturday was for…..rain!

Throughout the night I heard thunder rumbling around and torrential rain but when I got up it had eased off so I was hopeful that it might not be too bad as I had a journey of about 1hour 45 minutes. I was very glad that I decided to leave a bit more time for travelling as when I got within 10 miles of the venue the sky went black and the rain pelted down. It was so bad that even with my windscreen wipers on double speed it was hard to see but thankfully all the traffic slowed right down to a crawl until it passed. 

When I arrived at the venue it had stopped and the sky was just dull and overcast. I hoped that we'd just have perhaps some light drizzle at the worst. I didn't get my wish though.

The first thing I had to do was phone Mike to let him know I'd arrived safely. He told me that there was torrential rain at home which meant we'd be copping it later as it was moving East towards us. The second thing was a quick toilet break! Then I went to register and collect my number and headed back to grab a coffee and look around the visitor centre as I knew nothing about the area.

Fowlmead Country Park is situated near Deal in Kent on what was originally Betteshanger Colliery. Being a Northern girl myself I had no idea that there were coal mines down here in Kent and so I was interested in the story behind it and there's some information here. There were posters telling the history and I was fascinated to read that as there were no workers with experience of coal mining in the region they had to encourage miners from the North to move down here and they had to pay them much higher wages.

On my way back from the car I met Lord Vader, aka Paul, waving his lightsaber menacingly! We'd had plenty of banter about the Dark Lord knitting and I'd brought some pretty pink yarn and some needles but left them in the car 'cos it was starting to drizzle.

Pink is sooooo your colour Paul!
I should mention that Paul had brought some scrummy banana cake, made with rum and cardamom, for us all to dip into at the aid station. I always make mine with sultanas soaked in rum but the addition of cardamom really added depth to the flavour.

Before the start we had a race briefing from Traviss just explaining how things work and a bit about the route. There had been much debate about whether road shoes or trail shoes would be best and I'd settled on road shoes as the path at the start seemed OK. Traviss announced that it was someone's birthday, so we sang 'Happy Birthday' to her, and also that Vicky Horne had just completed 52 marathons in 52 weeks. Well done Vicky, that's a fantastic achievement and I wish I'd taken a photo of you!

What had attracted me to this event was that it wasn't a race per se with no winners or losers. It was more like the Caucus Race in Alice in Wonderland except we were running around a measured route with a time limit of 6 hours. If you wanted to run a marathon then you had to complete 10 laps; 11 laps or more turned it into an ultra marathon. I didn't make my mind up which to go for until the very last lap. I loved that it was such a wonderfully inclusive event with runners of all abilities.

As always I started near the back so I didn't hold up the faster runners. After a couple of miles I saw Lord Vader up ahead but noticed that his left shoelaces had come undone and were flapping around and so I speeded up a bit to tell him as they could have caused him to trip. 

I didn't take any photos until the last lap on account of the rain which started after the first lap. It was rather heavy and we all got soaked to the skin. At least it wasn't cold so it didn't bother me as once you're wet you can't get any wetter. It did, however, create lots of puddles which you either splashed through or tiptoed around. Whichever way you chose you still got wet feet as the grass at the side was sodden too!

There were signs reminding us to watch out for cyclists and there was a group of mountain bikers out early on, scrambling up and down the tracks. It was lovely to see several younger cyclists amongst them and they all looked as if they were having fun despite the adverse weather conditions.

Once the heavy rain stopped it was OK with just the odd shower to keep us nice and wet. Then after a few hours the clouds started to clear and the sun came out to dry us off. Here's one of the squishiest bits which didn't look too bad by the time I took this as the water drained away quite well. It was quite slippery though and I did wish I'd opted for my trail shoes on some of the undulating bits. Everyone had dark grey splashes all over their legs and I had to wipe myself down before I got in the car.

Squelching through the slag heaps!
The next batch of photos are from my last lap when the sun was shining and everywhere looked so much better. I'd decided that I wouldn't go beyond the marathon distance of 26.2 miles as I had a long journey home and needed a rest before the excitement of the next day.

Slag heaps, which Traviss informs me have been left without vegetation deliberately as some ground-nesting birds prefer this terrain

One of the many areas of water

Lord Vader and Vicky (sorry I didn't get a front view!). Unfortunately the force had deserted him around the halfway point but he still carried on the complete the marathon distance

Bonnie the dog, and Carolyn, completed the full marathon distance and looked as if she could have run much further when I saw them at the finish!
The last 2 photos are of the other important members of the team:

Rachel, who recorded each lap for all the runners and cheered us on. Each runner had to ring the bell when they had done as many laps as they wanted.

Traviss's lovely daughter Elanor (named after a flower in Tolkien - Traviss is a massive Tolkien fan), on the left, and helper who kept us supplied with cake/biscuits/chocolate etc throughout the day even though they got soaked too!
That really was a super event and I must show the medal again as it is serious bling, measuring a whopping 10cm across:

As if that wasn't reward enough, the goody bag was exceptional and had all the things a runner wants after a marathon (forget the isotonic drinks/energy bars/leaflets about upcoming events) - it had chocolates (lots of!!!), crisps, cider, cheesy biscuits & sweeties. I managed to ignore the chocolate & cider until I got home as I wanted to share them with Mike but I did scoff the crisps and cheesy biscuits before I set off.

Thank you Traviss, Rachel and team. I can't wait to do my next marathon with you soon.

My legs felt fine at the finish but when I started driving I felt some discomfort at the top of my right hamstring which seemed to be irritated by my driving position. Mary Massage Lady had done some work on it the week before and I was pleased that I hadn't experienced any discomfort during the marathon. After about 30 minutes of driving it was really hurting but thankfully I remembered that I had a couple of cushions in the boot of the car (doesn't everyone?!) and so I stopped and stuck one on my seat which helped alleviate the pain.

I did worry that it might be a bit niggly the next day as the coach journey to Ally Pally took 2.5 hours, but it was OK and I think the 5 hours of walking around the show stretched it out nicely!

Friday, October 10, 2014

David's off again!

You may remember David, from across the pond in the USA, who I wrote about last year, Well he's doing something even more amazing this year - he's running the New York marathon whilst knitting but not with needles but with his fingers.

Yes, you did read that correctly, with his fingers. How awesome is that!

The reason he has to adopt this method is that for reasons of security he has only been allowed to take part and knit as long as he abides by these restrictions: he can't use knitting needles or carry any tools such as scissors, he isn't allowed to carry his yarn around his waist or in a bag and he can't wear any clothing that obscures his body.

Undeterred, David has devised his own cunning plan to achieve his dream of taking part in the NYC marathon (and I am soooooo jealous 'cos it's always been my dream to run it one day!), sponsored by Lion Brand.

I actually chose to use Lion Brand Hometown USA for my crochet antics at the London marathon earlier this year. I hadn't seen it before but deramores generously donated the yarn for me to use as I fell in love with the fantastic range of bright colours. The 2 lap blankets I made out of the crochet chain were so soft and were well liked by the recipients.

Even better, he is again supporting an Alzheimer's charity. In his own words:
"I'll wear all of the yarn that I use. The start of the NYC marathon is cold. A knit hat and scarf, of normal length, is a common sight. So I plan to knit up some warmness to wear at the start and then unravel them and pull the yarn from an existing knit item to make an entirely new knit item. I love the metaphor. What better way to draw attention to Alzheimer's than making something out of an unraveling hat."
Isn't that a brilliant idea? Even better, he's linked the concept of unravelling the yarn as a metaphor of those whose memories are unravelling.

You can read about his training etc here on his website where you'll also find a link to his sponsorship page.

Here he is with a scarf he has finger-knitted on one of his training runs.

As he hasn't got the pressure of going for a Guinness World Record this time he's going to try and beat his previous best time for a marathon (and he's a speedy runner too). This would be impressive if he was just running but add in the knitting and it's awesome! I can't wait to see how he gets on.

I'll be catching up with David soon to see how he got on. In the meantime we did a short Q & A session together which you can read here on the Lion Brand blog.

This weekend is pretty exciting here as this morning I'm off out to run marathon number 37 and on Sunday I'm off to the Knitting and Stitching show at Alexandra Palace. I'll write about my adventures after the weekend.

Monday, October 6, 2014

Thank you and giving thanks

I have had several emails recently from people who tell me that they have been inspired to support Alzheimer's Research UK either having read about what I do or having heard me speak. I was especially touched to hear from a young woman who is planning to run a series of marathons in memory of her grandma who, like my mum, suffered from dementia.

Thank you so much for taking the time to contact me and it really makes my day to think that I have managed to reach out to other people who have experience of this devastating disease.

I've had a really tough few months with my asthma and arthritis, both conditions have really affected my running and my crafting and have been getting me down. Then I heard of the death of an old friend, not old in years but old in the length of our friendship and it put my niggles into perspective.

So today I am giving thanks that I can still knit, crochet, enjoy my garden and put one foot in front of the other to run (albeit slowly).

Carpe diem indeed.

Better show some bits and pieces hadn't I then!

The weather has been really warm all through September and I was even wearing shorts at the weekend. The Autumn colours are getting more and more vivid and I felt inspired to rummage in my yarn to dig out some colours that reflected those around me in the garden.

The colours of this beautiful Echinacea scream 'look at me!' don't they.
Green leaves turning gold and brown
This gorgeous Euonymus is ablaze with pink and red tints
Shades of brown and pink tingeing this Hakonechloa 
Sunlight illuminating this beautiful Carex 'Ponytails' 
Buff and brown on the dried flower heads of this hydrangea
Vivid yellow against dark bark
Virginia creeper in all its autumn glory
So why did I go rummaging in my yarn then? I've got a new jacket to replace my old favourite which  you can see here. I loved that green cord jacket but I've lost some weight and it was way too big for me and so it's gone off to a charity shop for someone else to enjoy.

The new jacket is a very dark navy and for some reason I felt the need to crochet a cowl to go with it. I've never really fancied cowls before but the idea was in my head and so had to be pursued.

I fancied the idea of large hexagons interspersed with small squares so I got out a few old doilies to see if there were any interesting patterns I could adapt. I wanted something light and airy to suit the yarn (which is Rowan felted tweed leftover from a colour work cardigan for a friend).

The shape of a snowflake or a star suits a hexagon well as they have 6 points so I played around with that idea until I got something I liked the look of, using just 3 colours. I've restricted myself to 7 colours for the motifs plus a pale blue for the joining chains.

Blocking before adding an edge
Tilly inspects it for me 
Experimenting with the hexagon sides

We treated ourselves to a swing seat at the weekend having always admired them but never found just the right one to sit happily within the wilder area of the garden. That is until we spotted this one, reduced in price in the sale. Mike soon assembled it and then we moved it around until we found just the right place - and it wasn't where either of us had thought it would go!

It's on the edge of the orchard.

See, still wearing shorts at the beginning of October!
It's a lovely place to sit and knit……. 
…and take in the view across the pond
We've been starting to clear the area around this pond, cutting back trees, clearing scrub etc. There's a long way to go yet and it will take us quite a while to get it done but it's just so lovely sitting there amidst the wildlife. Last night we took a bottle of wine down there and watched the ducks, woodpeckers, squirrels, rabbits, dragonflies and assorted other creatures going about their business.