Lady Astor of Hever: My mother and Parkinson's

In Liz Astor's debut novel, 'Since You Went Away' the character Margaret is largely based on her mother's experience with Parkinson's. Liz is donating 10p per sale to Parkinson's UK. Here she tells us why:

Lady Astor of Hever
My mother was diagnosed with Parkinson's by her breast cancer specialist. She had visited him to have a lump under her breast confirmed as malignant and he looked at her face and said:

"I can see that you have Parkinson's too."

She was in her early 80s and it took her 6 months to recover from the shock of the double diagnosis and come to terms with them.

My brother, sister and I did what we could in our own ways, but we could not have managed without the selfless devotion of our wonderful step-father.

My sister who had been a nurse spent every other weekend caring for my mother, my brother took care of their finances and as I lived the closest to them, I popped in often with my children and was 'operation cheer up'.

My mother was a beautiful, bright and vivacious woman who had always taken great pride in her appearance. When she could no longer go out, we arranged for a local hairdresser to visit her and a beautician to manicure her nails.

As her Parkinson's progressed and she was unable to cook for my step-father, she and my sister would have cooking sessions in her kitchen and make casseroles for the freezer. This made her feel that she was still of use to her adoring husband and not only a burden.

As each new challenge presented itself, we created new ways around them. When she found holding a glass too difficult, we provided her with a straw. We served her tea in a cup only half full and not too hot, and when holding a book became too heavy, we placed a cushion on her lap, and later, she held the pages open with 2 pegs.

But she suffered from depression and dreaded becoming an incontinent wreck and often mentioned suicide. To help and cheer her, and to give my step-father some relief, we employed a carer in the mornings. As the months wore on, the carer stayed longer, until eventually we employed 2 carers to cover the whole day.

But still there were several accidents and trips to the local A&E which caused them both enormous stress. Towards the end, when she found dressing exhausting, she gave up and spent her days in pretty housecoats and slippers, helped with incontinence pants, while she could still use them.

She died on 17 November 2008 at home in her own bed, cared for in her last week by wonderful Marie Curie nurses. Her husband, my sister, brother and I were with her and as she had longed to die for some time, it was as if we were wishing her well on her way to the stars. And to die in our own bed surrounded by our loved ones is what we all wish for.

My family and I miss her terribly. She was a wonderful wife, mother and grandmother and we all very close.  Sad though this is to tell, it is nothing compared to my dear friend who, coincidently, has also been diagnosed with breast cancer and Parkinson's, but in her early 60s. But she is as positive and vibrant as she has always been and determined to enjoy every day as long as she is able.

It is a great lesson to us all, but I would rather she had not developed Parkinson's. That is why I am so pleased to be able to support Parkinson's UK, in the hope that one day a cure will be found and in the meantime, those who have Parkinson's can be helped and encouraged by this wonderful charity.

'Since You Went Away' by Liz Astor can be purchased from any online retailer.

Highlights from our 2-day Parkinson's scientific conference

After a busy 2 days on Monday and Tuesday this week, we're reflecting on another brilliant Parkinson's UK research conference. The jam-packed programme - including 27 talks and 110 posters - was a fantastic opportunity for more than 200 Parkinson's researchers from around the UK to hear about the latest developments across a wide range of fields.

Our international keynote speakers, Dr Matthew Farrer from Canada and Professor Darren Moore from Switzerland set the tone for the conference with great talks about the latest breakthroughs and challenges in genetics research.

And we heard a host of fantastic short presentations from UK-based research teams, including Parkinson's UK-funded researchers unveiling important new clues about the role of the Parkinson's gene DJ-1 on day 1.

Throughout the conference we were joined by 3 passionate volunteers from our Research Support Network who each made vital contributions:

A selection of #parkinsons2012 tweets
The 2-day conference for scientists followed our day for our members and supporters, which was also a great success.

We encouraged researchers to share their thoughts on Twitter throughout the conference and they got a great conversation going using the hashtag #parkinsons2012

The conference ended on a high note, as our chief executive Steve Ford announced the 3 joint winners of the £2,000 poster prize, which was generously funded by our York Branch.

Bringing the best and brightest researchers together in one place to share ideas and develop collaborations is just one of the ways we're pushing our search for a Parkinson's cure to a new level.

We're already looking forward to the next conference in 2014!

If you were at the supporters' day or the scientific conference let us know your thoughts below.

Supporters' day kicks off Parkinson's research conference

Well, it's been an amazing day in York at the Parkinson's UK Research Conference

Members and supporters at the conference
More than 100 members and Parkinson's UK supporters joined us to hear 10 fantastic talks from researchers who discussed everything from genetics to the power of dance.

The day kicked off to an inspiring start when Research Support Network member Alan Cameron shared his own personal journey with Parkinson's and his reasons for becoming active and interested in research.

In session 1 our speakers explained the nuts and bolts of the genetics of Parkinson's and how understanding the genes involved is paving the way towards new and more targeted treatments for the condition.

After lunch we moved on to improving care and treatment for people with Parkinson's, including:

  • promising results from trials testing the sleep drug Zolpidem in people with Parkinson's
  • how research is moving us closer to simple blood tests that can diagnose and monitor Parkinson's
  • how we can help people with Parkinson's stay active and avoid falls
The talks concluded with a great interactive presentation from Dr Peter Lovatt (aka Dr Dance) who got the audience grooving as he explained the potential benefits of dance for people with Parkinson's.

Check out the full programme of talks (PDF)

And you can follow the conversation about our day in York on Twitter.

There'll be plenty more from us tomorrow when the scientific conference begins so keep following the conference on Twitter (hashtag #parkinsons2012). And we'll be adding photos from the conference on Flickr.

Testing times for people with Parkinson's

The controversial Work Capability Assessment, also known as the "fitness to work" test, has been causing great difficulties for people with Parkinson's. After campaigning relentlessly on the issue, we were recently given the opportunity by government to suggest changes to the test.

Our Policy and Campaigns Advisor, Donna O'Brien, who focuses on welfare and social care, has been helping to tackle the flaws in the assessment:

"For people with Parkinson's of working age, the Employment and Support Allowance (ESA) benefit is a financial lifeline. Eligibility is usually decided through a Work Capability Assessment.

"Ever since ESA was introduced in 2008 we've heard of people with Parkinson's who have been declared 'fit to work' despite the very serious problems they are experiencing with the condition. In large part, this is because of the flawed design of the Work Capability Assessment.

"The assessment is very crude and doesn't measure the ability to endure a working day, let alone a week, or reflect the fatigue, pain and unpredictability of Parkinson's.

"In 2010 an independent review recognised that those with fluctuating conditions, like Parkinson's or MS, and mental health or cognitive issues, were particularly likely to fall foul of the process. So we worked with other fluctuating condition charities to report on what needed to change:

"In answer to this criticism, the government has said it will continuously review and improve the current tests. While we believe this is not radical enough, this move does allow us to help push for improvements for people with Parkinson's.

"We've been working with other charities, talking to people with Parkinson's who have been through the tests, and consulting occupational therapists, to come up with improvements to the current assessment."

The future

The Government is now looking at how suggestions made by the charities can be tested alongside the current Work Capability Assessment, to see if it helps produce more accurate conclusions about "fitness to work". This process will take at least 6 months to complete, and then the government will consider what may be adopted based on evidence from the review.

Please leave your comments and experiences to ensure the voices of people with Parkinson's continue to be heard.

If you have any questions about the Work Capability Assessment please contact Donna O'Brien on or call 020 7963 9307.