Tuesday, May 7, 2013

Catching up

Phew, it's been another frenetic week here in redheadland.  After the London marathon Mike and I felt completely drained as the weeks before had been so busy so we thought it would be a nice quiet week last week - wrong.

Last time I updated the blog I was at Day 4 of my streak, having run 43.50 miles.   Today was day 15 of my 111 day streak and the total miles run so far = 112.99.  Yikes!  My legs are still feeling fine and as the weather has improved I've started to run cross-country a lot more which I really enjoy.  

But I'm getting ahead of myself.

First I need to write about the latest meeting of lay champions for DeNDRoN, the Dementias and Neurodegenerative Diseases Research Network, on 30th April, the Tuesday after London marathon.  I wrote about  my involvement in the first meeting last October and I couldn't make the meeting in January so I was excited to see how far things had progressed.

I had to be be up bright and early to get my run done before I caught the train to London.  I managed to walk via Covent Garden to sneak into Gudrun Sjoden's store (I didn't come away empty-handed!) but even then I arrived at my destination far too early so I had a little walk in Tavistock Gardens nearby.

I'd never seen this before - a park bench with free WiFi.

The beautiful blossom on this Japanese cherry caught my attention; so pretty.  The plaque underneath was a sombre reminder of the horror of Hiroshima.

The meeting was held at Mary Ward House which is an interesting looking building.

So back to the meeting which was mostly disappointing as things hadn't moved forward at all in fact they seemed to have gone backwards.  There was some grumbling from the people who'd attended the last meeting but out of the disappointment came some hope as we agreed to form sub-groups to target specific areas of the plan.  

I volunteered to be part of a group scrutinising the wording of leaflets etc as I have a background in simplifying documents to make them accessible to all.  I also expressed an interest in dealing with the user interface with the techy developers who would be writing the computer model as I have experience in that aspect as well.

I chatted to several people I hadn't met before and there was one man in particular who interested me on a couple of levels - he has dementia with Lewy Bodies which I hadn't come across before but the other thing was that not only does he live in the village where I was born, he lives in the very same street where I lived until I was 4 years old.  Given that I now live about 300 miles away from there I wonder what the chances of me meeting someone who lives there now were?

The next morning, Wednesday, at about 6:45am I was out tending the horses when Mike called me to the phone.  It was a researcher from BBC Radio Sussex asking me if I'd speak on the breakfast show at 9am.  News had just broken that Sussex Police, who cover my region, plan to use GPS devices to track dementia patients who were prone to wandering.  Lots of the human rights groups were screaming about the breech of civil liberty, treating them like criminals etc etc but I agree with Fiona Phillips in that it can be a real life-saver.

I was first to speak of 3 people in the debate at the start of the program and I was a little apprehensive as I knew that one of the 3 was very much against the plan and I knew I would come under attack.  Mum's wandering wasn't too much of an issue for us because as soon as she started to wander I left my job to be her carer full time; so my first point was that the problem is not that people have to be monitored but that they are left to fend for themselves, alone and confused in a world that no longer makes any sense to them.  

I had read beforehand that in a survey of over 250,000 people suffering from dementia and living alone over 60 % said they were lonely.  70% said that they had stopped doing things they used to enjoy due to a lack of confidence.  The majority of people with dementia said they felt anxious or depressed and 35% said they had lost friends after diagnosis.

We all had our say and there were plenty of people phoning in with their own stories.  I could go on and on about this but I think the case of a 90 year old lady from Brighton illustrates perfectly why using GPS devices to help locate dementia patients who wander is a good idea.  This poor lady went missing often.  She was last seen getting off a bus somewhere in Brighton over 12 months ago.  Every so often the story surfaces on the local news but she has never been found.  If she had been fitted with a GPS device then she would have been located swiftly and be back home safe and sound.  We may never know what happened to the poor lady.  So sad.

Thursday was a day of rest and preparations for the Badminton Horse Trials which I'll try to update asap (it was fab!).  This was tremendously exciting firstly because thanks to the efforts of Vicki and Jamie Graham, fellow Champions and campaigners for research into Alzheimer's (Jamie started to develop the disease at the age of 59), Alzheimer's Research UK was the chosen charity for the event in 2013.  Secondly, not only would I be in horsey heaven, I was going to meet one of my all-time heroes of the horse world - Richard Meade.

In the meantime, here are some photos taken on my runs over the last few days.  As always they are just things that have caught my eye or made me smile.

Stripey fields

Bodiam Castle in the sunshine

The little steam train, maintained by volunteers

A good tree for climbing (and so I did!)

The light at the edge of the dense forest plantation

Gnarled trunks of ivy

Sleepy lamb

Ramsons, aka wild garlic (the leaves are nice in salads with a mild taste of garlic - the flowers are edible too)

A tarmac heart-shaped pothole!

The trees starting to come into leaf

Oast houses now converted into homes - a lot of the land here was owned by Guinness many years ago with thriving hop farms

Part of an old hedge - I thought it looked like a Gonk!

Vivid yellow stems of new growth on willow trees

Tia and Wellington, 2 beautiful Bassett Hounds I met one morning

A glorious sunset

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