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 some 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!

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