Sunday, November 15, 2015

Little Voice

Feeling a bit sorry for myself as I have all but lost my voice. It started with a coughing fit one evening early last week. The next day I sounded like Darth Vader and I thought it was just asthma-related. I took part in a telephone conference call during which my voice kept going up an octave to squeaky heights and then down to bass baritone. In the high bits, my friend said I sounded like Donald Duck (ratbag!).

I thought it was just an allergic reaction to something but here I am nearly a week later, still with a hacking cough and the tiniest voice imaginable. Some might say that's not a bad thing! The worst thing is Mike has banned me from running until it clears up and although I know he's right it's still frustrating to be grounded and I'm being dragged to the quack tomorrow. Deep joy.

Anyway, it's an ideal opportunity to crack on with some Christmas charity knitting and crochet, although I can't share it on here, and catch up with some recent photos. What I can show, however, is my finished cowl, Cochal, from the 7 Skeins Club:

Here it's just had a soak and is being blocked loosely into shape

Kate's design used 2 main colours with a single row of the red but I wanted to use all the colours to make a nice bright contrast against my dark navy winter coat. It's a simple stitch and a quick knit and I'm really pleased with the result. I also wanted to conserve each shade of yarn so I had choices for the fingerless mitts and hat.

Cochal is the Scottish Gaelic word for hood and the cowl is made extra deep so you can pull it up over your head if need be. I've already worn it once when it was windy and pulled it up to cover my mouth and ears and it was jolly snug. I'm going to make one for Mike too but using a more restrained and manly palette.

I've been busy with end of year preserving and thought I'd try making some Quince jelly as I've never made it before. There was a huge crop in the Community Orchard in the village. Just look at the size of these fruits:

They have the most amazing perfumed smell. I don't know how else to describe it as it doesn't remind me of anything else I know. I just did a basic jelly preserve by chopping the fruit into chunks (they are very hard so you have to be careful), covering them with water then boiling them until they were soft.

Then I strained it through a jelly bag and used the basic formula of 1lb of sugar to 1 pint liquid. As the fruit was very ripe and juicy I added the juice of a lemon to help it set.

The colour reminds me of crabapple jelly except it has retained the perfumed smell. I've heard that adding a bit of quince to stewed apple can transform it into something amazing so I shall try adding some of the jelly to see if we like it. I tried it on toast but wasn't keen on it like that. Next try will be with cheese.

Before I became lurgified I'd been enjoying the colours of Autumn so here are a few shots from my runs:

Yellow willow

Lanes lined with true gold from Hornbeam

The changing colour of the bracken against this hedge looks like a Fair Isle pattern

Glorious shades of rust

These bracken fronds look as if they've been dip-dyed. It's interesting to see how they decay from tip to stem.

The yellow of these Hazel leaves shone out against the remaining green leaves and the mahogany-coloured twigs.

I noticed how the colours of these cherry trees seemed to be intensified on a dreary, wet morning

I was struck by how the colour of the trees echoed the brick of the house

I took this photo of the top of the hedge when I went out to check on the horses as the sun was setting

Mike's now given me 2 more days of being lurgified before I get sent to the Quack. I'm hoping I'll have recovered by then, especially as I've got 3 marathons coming up soon………which reminds me; I've got 4 more marathons to run this year and if I manage all of them then I'll have completed my 60 by 60 challenge with 18 months to spare.

My next, and most challenging, fund-raising effort will be announced before Christmas.

Sunday, November 8, 2015

Where there's a Will & What Lizzie Did Next


No, I'm not talking about Wills & Kate or but about the legal document setting out your wishes after death!

There's no easy way to talk about making a Will as it's something people often put off until it's too late. It's something to do when you're older isn't it. Or is it? Well I think it's really important to make one and then update it at regular intervals but that's not the reason I'm writing this. What I'd like to stress is how important it is for Charities for whom gifts in Wills, often referred to as "legacies", are a vitally important source of income.

I'm not going to go into any great detail as I am not qualified but I have learned a few things recently that have made me think so I thought I'd share them on here.

In our case we made our Wills when my mum came to live with us because we wanted to make sure that she would be OK if anything happened to us. Mum also completed what was then known as an 'Enduring Power of Attorney'** which meant that we could take care of her financial matters if she became unable to do so herself. Thank goodness she did as it made everything so much easier when she was unable to make decisions for herself.

**This has now been replaced with something called a Lasting Power of Attorney which is available in 2 types: Property and Affairs & Health and Welfare.

At the ARUK Supporter's Day last week we learned that Gifts in Wills fund approximately 1/3 of their research and are vital in their fight against dementia. Last year this amounted to over £5.6m from Gifts ranging from £50 to £713,000. They produce a booklet entitled 'A Guide to making or amending your Will' which is a valuable guide on what to consider when making your Will.

As I have made provision for a donation to ARUK in my own Will they asked if I would mind speaking to someone to explain my reasons for doing this etc. I was asked my reasons for supporting my chosen charities, what influenced my decisions, what did I think were barriers to people leaving legacies etc.

As we chatted I mentioned that although many people make regular donations to their chosen charities, sometimes monthly payments, whilst they're alive they might not have thought that when they die this valuable contribution will not continue, so perhaps they should consider leaving a legacy in their Will.

What Lizzie Did Next

I've lost count of how many times Lizzie Glennon has made an appearance on my blog but it's always a joy yo meet her and chat about her research. She has that rare ability to explain things in a way that I can understand and believe me I have had many Scientists speak to me in terms which I could not fathom!

I was delighted to meet up with her again at the ARUK Supporters' Day and even more excited to learn that she will soon be taking up a new role, again funded by ARUK, so I asked her to tell me a bit more about it so I could share it here. Her new job title will be Alzheimer's Research UK Fellow and in order to get approval for this she had to present her case to ARUK via their Grant Scheme.

In her words:
"My new project focuses on how some of the gene linked to Alzheimer’s disease might affect the development and progression of the disease. I’m going to be investigating a gene called BIN1. We know BIN1 is involved in how molecules get from the outside to the inside of cells, and how they are moved around the cell once they are inside, but we don’t know how this is relevant to Alzheimer’s yet. One of the things which happens early in Alzheimer’s is the protein tau (which late in Alzheimer’s forms the pathological tangle we see in the brain) moves from one part of brain cells (the axon), to the other end of brain cells (the dendrites). Brain cells with tau in the dendrites start to die, and lose function. I have found the BIN1 interacts with tau, so I am investigating whether BIN1 is involved in the abnormal location of tau in early Alzheimer’s disease, and then testing some currently approved drug which may act on BIN1 to see whether I can prevent any abnormal changes."
BIN1 = Bridging Integrator 1

Exciting stuff hey?!

What I love most about Lizzie is her enthusiasm which is infectious and will hopefully encourage other young Scientists to consider a career path in dementia research (which takes me right back to 2012 when ARUK launched their 'Defeating Dementia' report which stated that we need to get more young people involved in dementia research!).

Friday, November 6, 2015

In Da House

- The House of Lords that is!

This was to attend a meeting about a report ARUK launched recently entitled:

Women and Dementia, A Marginalised Majority

But first there's always my journey into London to talk about. It was rather dreary and threatening rain when I left home and there was nothing of particular interest to catch my eye at the railway station. Well, except for the patterns formed by the rails, platform and fence which had a real Art Deco feel when viewed together:

When I arrived at Charing Cross station the heavens opened and I took shelter in a bookshop for a while before heading off down Whitehall for lunch. I gave myself plenty of time to walk down the road to the Houses of Parliament but as I left the cafe I walked right into mayhem with hundreds of Police supervising a massive student protest about tuition fees.

Although it was very noisy it didn't feel threatening. They just wanted their voices to be heard.

I'm not sure what these people were protesting about but I found their use of ski-masks slightly unnerving and it was interesting that the Police flanked this group all the way along

When the last of the protesters had gone past I started walking along the pavement and was very impressed with the clean-up operation which started immediately. There were men with brushes sweeping rubbish off the pavement to be picked up by the road sweeping vans. Very slick.

The protesters stopped alongside Downing Street for a while and a group of Police stood guard around the monument in case it was defaced.

After a few minutes they started moving on towards Parliament Square.

As I reached Westminster Bridge it was closed to traffic and there was a line of mounted police blocking the way with barricades on either side of the road. I asked one of them which way I should go to get to the entrance I needed and was directed across the front of them.

A helicopter had been circling overhead, keeping watch all the time so I paused to take a photo as it flew past Big Ben. 

Shortly after that I met up with Kirsty, from ARUK, and we negotiated our way through the crowds until we couldn't get any further on the pavement whereupon a kindly Policeman let us through a gateway after we'd explained where we were going.

After we'd passed through security we were ushered into a small room full of other people who were waiting to go to their respective venues. It was a small area and it got very hot!

Kirsty and Marcus getting ready to prepare things for the presentation

Finally we were called to follow a rather brusque female security guard and we were left standing outside for about 10 minutes before she allowed us to progress through to the venue. It was quite a relief to get some fresh air and I met up with Viv again which was nice.

These were our speakers for the event:

Valerie Blumenthal, Hilary Evans, Shaheen Larrieux and Baroness Perry of Southwark

The event was being hosted by Baroness Perry of Southwark whose late husband lived with dementia so it is a cause close to her heart. She opened the event by explaining why dementia research is so important before handing over to Hilary Evans who told us a bit about the report.

I really didn't like of the statistics that were presented and Viv and I both kept looking at each other with horror. 

For example:
  • Dementia is the leading cause of death among women in the UK
  • 61% of women develop dementia as opposed to 39% of men (of course, this is largely because women live longer than men)
  • After the age of 65, the risk of developing Alzheimer's disease doubles approximately every 5 years.

But the one that we really didn't like was this:
  • Women over 60 are twice as likely to develop Alzheimer's disease than breast cancer.

That is one heck of a scary statistic. Afterwards we chatted about how watching our loved ones taken by dementia (Viv's mum had early-onset Alzheimer's) had affected our attitudes to almost everything. We both have a Carpe Diem mentality 'cos you never know what's going to happen, or when.

It's interesting that when I mentioned this to a friend last week she said she thought it was a very pessimistic view to take but it's quite the opposite and Viv understood completely. Her mum had always said she'd do such-and-such when she retired and so she put things off. But she developed early-onset Alzheimer's in her 50s and so never got to do any of the things she'd planned. So sad.

In my own case it's not just about being aware of dementia; my sister died at the age of 60 and I am scarily close to that age (not that I'm suggesting that I will suffer the same demise, it's just that it calls things into sharp focus), my father had all sorts of plans for his retirement which never came to fruition because he was crippled with arthritis by the age of 65. I think that, more than anything else, has influenced my own attitude plus I'm painfully (quite literally!) aware that my own version of arthritis is getting worse at an exponential rate.

There's Lizzie again! I shall be writing about her new project asap. It's very exciting.

Then it was the turn of Shaheen Larrieux who had to leave her career to care for her mother. Tell me about it (but needs must and I wouldn't have had it any other way)! She also touched on something that isn't mentioned often, namely that in her culture there is no word for dementia, you are either normal/sane or mad/insane and people who have dementia are shunned.

I remember a few years ago having a conversation with someone from the Alzheimer's Society in relation to people from Ethnic minorities being integrated into Care Homes. I wondered how they could  be integrated into a system in which music and singalongs at present consist mostly of popular songs from WW11? It seems inappropriate to have Vera Lynn crooning about the White Cliffs of Dover in a multi-racial situation.

Next was Valerie Blumenthal, the author of 12 novels, who has the same type of dementia as the late Terry Pratchett; Posterior Cortical Atrophy (PCA), an unusual form of dementia affecting the back part of the brain which controls visual and spatial awareness together with orientation. Whilst her eyesight is fine, the messages sent from her brain to her eyes are confused so for example she can see a parking space to the left of a parked car when the free space is actually where the car is already (I hope that makes sense).

When she spoke both Viv and I noticed the similarities between her delivery and how Terry spoke - frequent pauses to gather her thoughts, prompts from her husband and daughter when she lost her thread etc. She did an amazing job of explaining what her condition feels like and is passionate about getting GPs to recognise the symptoms of PCA more quickly. What an amazing lady. Last year she wrote an interesting post on her blog about her journey which is well worth a read.

After that there was some more socialising and meeting fellow supporters. It was lovely to see lots of new faces as well as old chums. Here I'm chatting with Viv again.

When I left the confines of the House of Lords to catch my train I was hit by a wall of sound. Sirens wailing, vehicles screeching, people shouting and chanting & helicopters whirring overhead. There were Police everywhere.

I walked as quickly as I could, weaving my way in and out of the crowd of people on the pavement until I got halfway along Whitehall and encountered another separate protest about the visit of Al Sisi to England. There was a bit of a skirmish going on so I upped my pace and got away as quickly as I could. I was glad to get back to the peace and quiet of home.

No marathons for a week or so yet but there's knitting to write about and more dementia stuff. I need more hours in every day please!

Tuesday, November 3, 2015

ARUK Supporters' Day & marathon 56 of 60

It's been a busy weekend!

Alzheimer's Research UK Supporters' Day

Having rescheduled my marathon for this weekend meant that I couldn't stay for the whole day as I needed to get home in good time for an early start the next day. There was no way I was going to miss it though! I decided that I'd stay for the morning session and then head off after lunch which meant I still had time to catch up with a few people.

At the moment, our trains are not as reliable at weekends due to the on-going refurbishment of London Bridge station and if any get cancelled they seem to be the ones stopping at small rural stations such as the one I use. When I checked online everything seemed OK so I was hopeful it would be OK but I still chose an earlier train so I had some contingency.

It was a murky day and everywhere looked rather dreary.

I love seeing the outline of branches once the leaves have fallen. They almost look like the skeletons of leaves (if you half close your eyes)

But there's always something to brighten things up and the dahlias in the planters were still flowering their socks off! Just look how tall they've grown and they haven't been supported with canes.

I noticed this plaque and couldn't remember if it was there before or perhaps it had been repainted and therefore caught my eye. Sadly, the Bistro wasn't open as they open later at weekends so I couldn't get my caffeine fix.

The journey in was uneventful and I spent most of it reading the paper followed by looking out of the window. I never tire of the London skyline.

I arrived with plenty of time for a leisurely walk to the Wellcome Collection. I haven't linked back to all my blog posts as I've been there so many times before but I think my favourite was taking part in the Living With Dementia event back in 2010. I made so many contacts there and several Carers still email me just for some moral support.

There was a lot of activity going on in Trafalgar Square with a gigantic marquee where the Rugby World Cup was being shown later. There were 'Crowd Control' officers all over the place already and on my way back there were dozens of Police vans blocking off roads ahead of kick-off. I took one of my favourite routes through Seven Dials which has many happy memories.

As I came up to Bedford Square, a private garden for the use of local residents only, I spotted this huge sculpture which looked like something from a Roy Lichtenstein painting which would be accompanied by the word "Wham!" or "Splat"!

As I got nearer I realised it must be part of an exhibition taking place in the AA Gallery nearby. They were responsible for the striking Rainforest Pavilion exhibit last year.

As I arrived at the venue I bumped into Sarah who'd just received a phone call from the nursing home caring for her husband Andrew. The call had been cut off and she wasn't sure of it was the call we all dread so was dashing outside to phone them back. I caught up with her a few minutes later and she was relieved that it was more a case of someone panicking and being over cautious which was a huge relief.

It was Andrew for whom I made one of the blankets made from the yarn used to make my crochet chain during the London marathon. I'd started crocheting Andrew's blanket on my journey in and then unwound some of my chain to finish it off. The heart in the centre has a raised design as people with dementia, and older people, like to feel the texture of fabrics. She told me that it is always a talking point with staff and visitors and I'm so glad that they are getting enjoyment from it.

Sadly, the beneficiary of the other blanket passed away earlier this year but I know that it wrapped her in love for the last year of her life.

The entrance hall is fabulous following a revamp and I could have spent ages taking photos but I restricted myself so I could go and chat with people.

The fabulous staircase - I wish I'd had time to explore upstairs

I spotted Kirsty and photographer Paul Starr busy snapping away. It was my turn later and thankfully we went into the auditorium so there weren't many people around to watch! They needed a new photo of me for the promotion they're doing about leaving a legacy in your Will which I have been involved in.

I loved this upside-down sculpture suspended from the ceiling

This eclectic collection of light bulbs must look amazing at night

It was great to catch up with friends old and new, each with something in common - a passion to defeat dementia. There was much hugging and chattering! I was delighted to catch up with Vicky (late as always Mrs Graham!) briefly before we headed into the auditorium for the Introductory session. I was delighted to meet up with Viv and we sat together throughout the first session.

It's been quite a year for ARUK and Hilary Evans, Chief Executive, did an excellent job if reminding us of everything that's been achieved. We felt proud to have been a part of it.

Then it was the turn of Ian Wilson, Director of Fundraising, who outlined all the tremendous inroads his team has made. Inspiring stuff indeed!

An impressive list of Corporate partners

Then it was time for our 'break-out' sessions of which there were 3 throughout the day. As I was only able to attend the morning session I had asked to be in the group about Wills and I think I need to write a separate post about that as there is lots to talk about and it deserves its own space.

At lunchtime I was thrilled to meet up with the lovely Lizzie Glennon, who's appeared on my blog many times in connection with her research into dementia, and to hear her news (which I'll write up soon too). We also did a bit of plotting but that's a secret for now.

Lizzie is always easy to spot as she loves bright colours which match her personality perfectly!

All too soon it was time for me to head back to Charing Cross to catch my train home. As I reached Charing Cross Road I realised the whole road was cordoned off and there were loads of Police heading off to Trafalgar Square, presumably for the Rugby event.

The train was kind to me and was on time with no delays so I had a pleasant journey making a start on the next project from the 7 Skeins Club which is a cowl. I'm using my own colour combination as I want to make matching fingerless mittens so need to conserve enough wool in each colour.

I arrived home in plenty of time for a pleasant evening of lasagne and red wine, my preferred marathon fuel!

Marathon 56 of 60

Yep, I know, I still can't believe I'm so close to reaching my target. I keep waiting for something dreadful to happen to scupper my cunning plan (rather like last week when I had to miss Beachy Head!)

I knew that the weather forecast for Sunday was for fog and so I had already factored in extra time for my journey but when I got up at 4:30am it was obvious that I needed even longer. Oh my goodness it was a real pea-souper (apologies to my overseas readers, it just means it was really thick). I couldn't even see my car in the driveway when I looked out of the window. In fact, it was scarily thick, with visibility not far beyond the car bonnet and I know Mike was very worried about me travelling in it.

The first thing I did was to revise my route to avoid the motorway and hopefully miss out the inevitable bad/mad driving that so mnay people seem to adopt in adverse weather conditions. Then I made the wise decision to leave even earlier than planned so I could drive at a sensible speed.

My route through the country lanes was slow but thankfully uneventful as there was very little traffic around. As I got nearer to towns and villages the fog was not quite as thick and I could see about 2 cars' distance ahead. No time to relax though as there were more cars around by then although there was more traffic going in the opposite direction. 

As I headed towards Pegwell Bay I encountered a road closure, which Traviss had warned us about but wasn't sure if it was going to be in place on the day,  so had to do an about-turn and head off along the dual carriageway. Kat and Jools were just ahead of me and as we turned down towards the sea there was a Police car blocking the other carriageway. When we arrived they told me that they'd seen 3 accidents on their way there, caused by stupid people driving far too fast and not being about to see the many roundabouts (there are soooooo many of them on that road) which they then crashed into. Why, oh why, don't people just slow down? Nothing is so important that it's worth risking your life and the lives of fellow road users.

Mike was very relieved to get my phone call saying I'd arrived safely.

It was the usual format; get into running gear, congregate at the start, meet up with the running family, collect your race number, receive starting instructions/announcements, head off to run as many laps as your body or mind will allow, chat to fellow runners en-route, collect medal & goody bag, eat cake, drive home. Well, that's the abridged version anyway!

Runners in the mist

Greg sporting his new SV&N hoody which he's earned by running 1000 miles at their events

These are very special hoodies as money can't buy you one, you have to earn it. My tally is currently 370.45 miles so it might be a long time before I get one!

2 legends in one photo, both of whom need no introduction as they've appeared on my blog many times before - but just to update you, that's Ruth (who ran her 400th marathon the other day) with Brian behind (now with over 1100 marathons to his name)

Ruth's hubby Paul (a marathon widower!) complete with celebratory cake

Traviss making announcements - I think he'd make a lovely air hostess as he's got the moves!

We all hang on his every word! 

Andrew looks on in awe (but he'll be completing his 100th marathon in May next year so he's no lightweight!)

Well done young hippo. Amazing and inspirational stuff.

That's almost it for the photos as the fog never lifted much throughout the whole day and in fact it started to thicken up just as I was on my penultimnate lap so I took the opportunity to take a couple photos of the Viking boat whilst I could see it (last time it was all covered up).

The last photo sums up the weather for the day so you won't be surprised to hear there aren't any photos, so to see what we missed have a look at my photos from February when the weather was glorious.

Now for the running part. This was an event with a 6 hour time limit during which time you could run as many or as few laps as you wished. 8 laps was the marathon distance and you could add more laps as long as your last lap started before 5 hours 45 minutes. My plan was to run an extra lap if I finished in a good time.

I was feeling good and my breathing was almost back to normal so I had no worries on that front and I quickly settled into my pace. There were lots of people to chat with en-route and that's one of the things that makes Traviss and Rachel's events so special. Mark and Sharon were our cheerful marshalls for the day and it was lovely to see their smiling faces on each lap (thanks you 2 xxx). Janet, Dee and Jackie manned the aid station (thanks ladies) and Becky was on wristband duty (each time you complete a lap you get a wristband). Thanks ladies. Lovely also to get a surprise visit and a hug from Karen who was looking really well.

I thought the fog would lift as the morning wore on but although it got a bit thinner it started to get even thicker in the afternoon. By lap 6 I was well on target for around 5 hours but on lap 7 my right knee started to twinge a bit (tight ITB and hamstring I think) which caused me to slow down. I played running leapfrog with Karen and James which helped take my mind off it a bit (they were run/walking and on their walk bits I caught up with them but couldn't keep up when they ran!). I walked a bit more during lap 8 and at the end of that lap my time was 5:09 and I made the decision to stop for 2 reasons - I didn't want to aggravate my knee and the fog was looking a bit iffy. My official time was 5:09:44.

I am so glad I made that decision as when I headed for home I found the road blocked by a Police car. As I didn't know the area well I had to get out and ask him to point me towards an alternate route to Canterbury, preferably, or Dover if no other option, which he did. I asked him what had happened and he told me that it was yet another crash and that they'd had a horrible day full of drivers driving recklessly. I felt so sorry for him I gave him the Penguin biscuit from my goody bag which he said was the nicest thing that had happened all day. Bless him, at least it brought a smile to his face!

The journey home was slow and quite stressful as I saw some appalling driving - people tailgating and others overtaking on stretches of road where you could only just see beyond the bonnet of your car. Complete madness.

I'd phoned Mike to tell him I'd be about 2 hours but the journey was so slow I had to stop off in Ashford to say I'd be at least another hour. It also gave me an opportunity to buy a bottle of wine to celebrate although I did have to do a rather strange walk across the car park to the shop as my leg had seized up from sitting down for so long!

Finally I arrived home and we worked out my total travelling time was 5.5 hours, as opposed to the 3 hours it would have taken ordinarily, so I'd spent more time travelling than running! Never mind, at least I got home safely.

Another fab medal for my collection

Next up is a trip into London on Wednesday to attend a reception at the House of Lords. This is an event organised by Alzheimer's Research UK, and hosted by Baroness Perry of Southwark, to present their report entitled "Women and Dementia: A marginalised majority" .