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Getting the full picture on Parkinson's

On Monday we launched our first ever public awareness campaign, designed to change the way people think about Parkinson's.

Here our marketing manager, Lily Dwek, explains the full story behind the campaign:

Full page article and adverts in The Metro
Since joining the charity one of the things that most struck me was just how little the general public knew about Parkinson's - something that I desperately wanted to start to change.

So, how do you get the public to change their views on Parkinson's? The answer, like the condition itself, is far from simple. To change someone's view, you need to create something that will encourage people to stop and take notice - and for that you need a good idea.

Like many good ideas, it was a chance conversation with an old friend that led to the opportunity to really put our plans for change into action. This old friend happened to work for a creative agency that was looking to help a worthy cause - and so our first public awareness campaign was born.

The campaign uses cleverly reworked images of 6 everyday activities that we all take for granted that can be incredibly difficult for those affected by Parkinson's. The images of each activity have been mixed up to create a disjointed visual puzzle that brings to life the difficulties of living with Parkinson's.

Creating a clever campaign is one thing, but if it isn't noticed then all of your work can be for nothing.

Overwhelmed by the response
Spotted on South West trains!
Although it is only a few days since we launched the campaign, I have been overwhelmed by the response. As well as seeing our adverts in the papers, the real highlight has been seeing so many people sharing their stories as a result.

Our Twitter and Facebook pages have been buzzing with hundreds of people talking about the ads and the campaign (on Twitter we're using the hashtag #myeveryday if you want to join in).

These are not only people talking about their experience of life with Parkinson's, but also those with no connection to the condition feeling compelled to comment on our work.

Although we may not be able to change the world with an advert, this campaign is certainly the first step in our mission to make life easier for people with Parkinson's.

If you spot the ads, I would love to hear what you think of them.

Parkinson's research - what to look out for in 2013

We often get asked how close we are to a cure for Parkinson's and what research is being carried out to achieve this. Dr Kieran Breen, our director of research and innovation, gives us his opinions on what he thinks are the key areas in Parkinson's research to watch out for in the future:

Dr Kieran Breen
All of the currently available Parkinson's drugs treat the symptoms rather than the condition itself. What we urgently need to develop are therapies that will slow down, halt or reverse the death of the nerve cells that happens in Parkinson's. This would, effectively, be a cure for the condition.

Research towards a cure is the primary aim of the current Parkinson's UK research strategy. Understanding how and why nerve cells die will give us vital information about how we can actually focus on treating the Parkinson's rather than the symptoms.

In addition to the research funded by Parkinson's UK, we keep very much up-to-date with other research that is carried out outside of the UK. We also speak with other funders - I had a very productive meeting last week with my counterpart at the Michael J Fox Foundation - as well as with researchers around the world.

It's vital that we all work together to achieve our goal - a cure for Parkinson's. But there is so much going on at the moment that I can only highlight a few areas that I think show particular promise.

Understanding how Parkinson's develops

We have supported a lot of research to try to understand how Parkinson's develops. By really understanding what happens within a nerve cell to cause it to die, we can identify therapies that can treat the condition itself rather than the symptoms. For example, one of the key events in Parkinson's is the development of Lewy bodies in the brain. These are specific changes that occur when a cell starts to die. Lewy bodies are then thought to spread throughout the brain as the Parkinson's progresses. So, if we could target this, we may be able to slow down the progression of nerve cell death.

Another target is a protein called synuclein which clumps together to form Lewy bodies. So this is another avenue that is being addressed to identify chemicals that may prevent Lewy bodies being formed (PDF file).

Drugs prescribed for other conditions

The development of new drugs is extremely expensive and takes a long time. But it may be possible to use drugs that are prescribed for other conditions to treat Parkinson's. Based on results from a Parkinson's UK-funded study, a small clinical trial has been carried out to look at whether the anti-diabetic drug Exenatide may help to slow down the progression of Parkinson's.

Also, a study in the US has suggested that isradipine, which is used to treat high blood pressure, may also slow down the progression of Parkinson's. But we urgently need to do more research to identify other drugs. This is very much on the Parkinson's UK agenda.

Gene therapy and stem cell therapy

There are also other approaches that we can take to develop a cure. For example, gene therapy aims to enable nerve cells to be more efficient in how they work. Some current studies are examining genes that may actually stimulate nerve cells to regrow.

And of course, in the longer term we have the potential of stem cell therapy where we can replace the cells that have died in Parkinson's with new nerve cells. This may still be a long way off, but it's amazing how much progress has been made in this area over the last couple of years.

In fact, the winners of the Nobel prize for medicine this year identified new ways in which we can generate stem cells and this could have a significant impact on the future treatment of Parkinson's.

So, what about 2013?

Well, while there are a lot of promising areas in the pipeline, realistically there is unlikely to be a cure for Parkinson's within the next 12 months, and it's not possible to give an exact timescale of when a cure will come. However, we are committed to building upon our understanding of the basic science of the condition to develop new therapies. Essentially, we will translate the research from lab to life.

This requires investment in some high risk research studies but if they pay off, there could be a very high reward. We can't afford to be 'safe' in our research funding. It is only by being brave that we can make rapid strides forward.

The advances that are being made give me a real sense of hope that, day by day, we are getting closer than ever to a cure for Parkinson's.

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.

Alex Flynn - the man behind the 10 million metres

When Alex Flynn was diagnosed with Parkinson's, it set him on an unexpected and inspiring journey - to run, cycle and climb 10 million metres by 2014 to raise vital funds towards a Parkinson's cure.

After Alex appeared on The One Show earlier this month many of you offered your support, asked about his story, and discussed the impact of his challenge on the public perception of Parkinson's.

So Alex has written a guest blog for us, to talk about how he sees himself raising awareness of the condition:

Alex in training
"I'm no different from any other person with Parkinson's, and undertaking challenges is not what I expect or (as far as I am aware) what third parties expect other people with the condition to be able to do.

"Parkinson's and its symptoms are individual to every person with the condition - your own personal designer disease. I was diagnosed 4 years ago and, currently, incredibly lucky enough to be able to continue the exercise regime I did before my diagnosis.

"I believe this exercise programme helps slow progress of Parkinson's on my body - although this is from my own personal experience and I'm not saying it as a recommendation or advice to anyone else.

"What is clear to me is that the effects of Parkinson's - such as tremor, dystonia, fatigue, and rigidity - are progressing nonetheless. As time goes by the less and less I will be able to achieve and do.

"So the challenges I put myself through are the most succinct way I can think of to raise awareness of Parkinson's, to show people the effects of the condition, and the need for a cure.

"Don't get me wrong - I am positive about the future and hopeful about the research undertaken over the last couple of years. It has driven and continues to unlock new avenues of discovery, which inextricably will lead to better lives for us all.

"So if my challenge raises funds to further this research and keeps me moving, then that's good enough for me."

Visit Alex's website to find out more about his challenge.

On the Hunt for answers at the Conservative party conference

Long-time supporter, Tina Walker, spent this week speaking her mind as she accompanied the Parkinson’s UK team to the Conservative Party Conference.

"As someone who lives with Parkinson's, I may not be able to work but what I can do is make sure my voice is heard.

"One of the first people I spoke to was Jeremy Hunt, the new Health Secretary – I put him on the spot by asking him about the Long Term Condition health guidelines and told him they should be mandatory.

"I also spoke about the new Personal Independence Payment, the effect it has on people with Parkinson's and that I am afraid further cuts will mean I'll lose my car and my independence. He told me that he would take what I said away with him, but I was still determined to speak to him again.
Iain Duncan Smith and Tina Walker

"So when the Parkinson's UK team had a meeting with Mr Hunt 2 days later I was ready for an argument – but managed to restrain myself. I told him that the Government should consult the people who use the services when they design assessment tests. Disabled people should be involved at the conception of an idea rather than the birth.

"I was there when David Cameron came over to our stand – when he found out our buzzer game was the same one Nick Clegg played at the Lib Dem conference, he had to have a go. To top it all off I met Brian May and I was star-struck! He was lovely.

"I was very tired now but it was well worth it - I'd go to all 3 conferences if I could. There are 360 MPs in this country and if 360 people with Parkinson’s started talking to them we'd make our voices heard – that’s what we’ve got to aim for."

We attended all of the 2012 party conferences and you can find out more about what we did and what you can do to get involved at

Meeting MPs, policy praise and Ed Balls buzzing at the Labour Party conference

This week Trustee Alun Morgan joined our Policy team at the Labour Party conference, to tell people about the nitty-gritty of living with Parkinson's.

"Being a Trustee I am used to getting involved in all manner of meetings to try and spread the word about Parkinson's.

Alun watches Ed Balls try our buzzwire game
"This week, I had a very worthwhile week of getting to know people, talking to MPs about what it's like to have Parkinson's, and even meeting Ed Miliband.

"The conference was a great chance to speak to MPs in person and we gave briefings to Stephen Timms, Huw Irranca-Davies and Anne Maguire, which were very effective. My role was to get down to the nitty-gritty and speak about what it's like to live with Parkinson's day-in-day-out.

"We also talked about the current work capability assessments, how badly these have affected people with Parkinson's, and how they are completely unsuited to our needs. They seemed genuinely interested and even told us they would do some lobbying work in Parliament over the new Personal Independence Payment which lot of people are worried about.

"One highlight of the conference was when Baroness Thornton told us that Parkinson's UK gives really good policy briefings which is why we get so many mentions in Parliament - great praise for the team!

"Another memorable moment was when I saw a big crowd, realised something important was going and shot over there to introduce myself to Ed Miliband. It was a brief encounter, but I got the chance to tell him I was a trustee for Parkinson's UK and he expressed his sympathy that I was living with the condition.

"Our buzzer machine was one of the main attractions at the conference and a great photo opportunity for lots of MPs including Ed Balls, who I sort of harassed into coming over. Every time I saw him I said 'are you coming then?' - until eventually he did!"

Our information stand will also be at the Conservative party conference next week (7-11 October).

To see our pictures and tweets from all of the party conferences, follow us on Twitter at

Speaking up for change at the Liberal Democrat Conference

Earlier this week our staff were joined by people with Parkinson's at the Liberal Democrat Party Conference to speak up about the realities of living with the condition.

Apple watches Tom Brake MP try our buzzwire game
Among those offering their support was Apple Holden who believes that if people with Parkinson's say their piece, we can create a real change. Apple tells us how she found the conference:

"I've lived with Parkinson's for 7 years. When I was diagnosed I was already caring for my seriously ill husband and, since his death 2 years ago, I’ve been coping with bereavement and living with Parkinson's on my own.

"Volunteering with Parkinson's UK in the last year has been great and I was really pleased to go to the conference - even though I had never done anything like this before and was out of my comfort zone!

"It was such a brilliant opportunity, and a wonderfully supportive team from Parkinson's UK. I got to talk to people who are in a position to influence change, including parliament members, and told them what it's like to live with Parkinson's, how it progresses and how we adjust our lives around it.

"It was heart-warming to see that people were genuinely interested, asking poignant questions and expressing concern to enable us to change things for the better. After I had spoken to Tom Brake MP, he even wrote about it on Twitter. I was so excited that I pumped my fist in the air and shouted 'yes'!

"Other conference delegates came to me directly to ask me how I cope with Parkinson's as they have friends or relatives with the condition. I think we helped to educate lots of people on Parkinson's and the way it changes from day to day.

"Even though I was exhausted, I'd definitely do it again. I felt jubilant and hopeful that we made a difference. It's very powerful if we speak up about what's wrong with the system, what people with Parkinson's need, and what great work Parkinson's UK is doing. I say get the word out there - and just tell it as it is!"

Our information stand will also be at the Conservative and Labour party conferences in the coming weeks (with the Labour party conference starting this Sunday) so there'll be more opportunities for our staff and people with Parkinson's to talk to MPs and delegates about living with the condition. Nick Clegg's already tried his hand at our buzzwire game - will David Cameron and Ed Miliband have a go?

To see our pictures and tweets from all of the party conferences, follow us on Twitter at

Fulfilling an Olympic dream, despite Parkinson's

Matt Eagles, 43, has had Parkinson's for many years and is a keen sports photographer. During the Olympics most of us watched from our sofas or the stands, but Matt was amongst the action. This is his story…

“17 days, 10 football matches, taekwondo, badminton, basketball and beach volleyball. 3 times at Wembley Stadium, 3 times at Old Trafford, and once at Cardiff.

“Over 1,500 rail miles and thousands of pictures later, my journey as official Olympics photographer is now complete.

“I am still absolutely buzzing. I cannot believe ‘I was there!’
Uruguay score against UAE - Photo by Matt Eagles

"I lived on adrenalin the whole time. But I was concerned my Parkinson’s would spoil my big chance.

"I had visions of falling over in front of a global audience of billions as the gold medal was presented at Wembley - it never happened. I had recently started on new medication and thankfully it worked like a dream.

“On the whole my mobility was great. I walked miles with heavy camera equipment, sweated buckets, I always ended the day exhausted but smiling.

“The venue photo managers and stadium staff were incredibly helpful. They organised lockers to store equipment and giving me bottles of water and power bars when nothing was available elsewhere.

“When I wasn’t so good the volunteers spotted my discomfort before I cared to admit it myself.  An army officer spotted I was wobbly outside Wembley Arena and a wheelchair arrived (for which I was secretly extremely grateful). Then I was taken to the media transport where I headed to the Olympic Park.

“At beach volleyball I had really bad cramps and could barely stand having walked nearly 2 miles in the wrong direction trying to get to Horse Guards Parade. I was fast tracked into the venue again in a chair and taken to a disabled viewing spot far better than my original ticket.

“My big passion is football. I was completely focused on the action at Cardiff and Wembley. Although kneeling on concrete with bare knees for an hour and a half took its toll.

“I made sure my Parkinson’s didn’t spoil my moment to shine. I proved to myself and any doubters that if you are determined enough there are no barriers to achieving your goals.”

You can see a selection of Matt’s best photos from the Olympic Games on the Photo Gallery of the ESPN website. There are more of Matt's fantastic photos on his Flickr page.

What were your experiences of the Olympics? Did you attend an event?

Parkinson's in the media this week

British acting legend, Bob Hoskins’ announcement that he was retiring from acting after being diagnosed with Parkinson’s caused a flurry of enquiries from the media to our charity on Wednesday night. Laura Carpenter, our Media and Communications Officer, talks about the busy week in the media for Parkinson’s.

Working in a press office you often expect for unexpected things to happen. The news agenda sets your working hours. When the phone rings at 5.30pm with an urgent enquiry you have to respond immediately because the media can’t and simply won’t wait.

Raising awareness and bringing attention to Parkinson’s as a condition to promote understanding for those affected is an ongoing challenge.

Someone well-known like Bob being diagnosed with Parkinson’s will of course be devastating for Bob and his family. But it also enables the condition to be brought into the light and to be talked about and explained.

Since the surprise announcement, our staff and people with Parkinson’s have been out and about in the media talking about the condition and what it means when someone is diagnosed.

Every national newspaper carried some information about Parkinson’s including the Daily Mail and Daily Express. As well as this fantastic coverage, our Chief Executive, Steve Ford, spoke to ITV’s Daybreak to give further information about the condition.

Daiga Heisters, our Head of Professional Engagement and Education, and Tim who runs our helpline have been interviewed by lots of local radio stations.

These have included BBC Radio London, LBC, BBC Radio Suffolk and BBC Radio Merseyside – and the requests keep coming in.

Jane Hill at our 2011 Christmas concert
Jane Hillwhose Dad had Parkinson’s, and who is a BBC newsreader and one of our most active celebrity supporters, has also written about understanding of the condition on the Guardian website.

Our Director of Research Kieran Breen has also spoken to the Mail on Sunday the future of research into Parkinson’s, so look out for that one due out on Sunday too.

We hope this will mean more people will get the information and support they need from our charity. We’re already seeing this happening.

Since the announcement, our website has been inundated with visits to the site – 7,622 on Wednesday and 6,727 on Thursday. The second and third highest number of visits to the website ever in a single day - only behind to the launch of Parkinson’s Awareness Week earlier this year.

Bob’s announcement has been an important catalyst to get people to finally start talking about Parkinson’s.

Once the media polish fades, we hope that the lasting legacy of his experience will be one of helping to create better understanding and awareness of the condition – something we so desperately need.

Be inspired by Joseph and Wiggo and join us on a cycle ride

We’re always pleased to hear about the amazing challenges and lengths our fundraisers will go to raise funds for us.

This week we heard from Joseph Giret QC, who has been lucky enough to be chosen as only 1 of 7 amateur cyclists from across the world, to take part in a prestigious 780km cycling event called Haute Route.

Joseph will start his challenge in Geneva, Switzerland and will finish in Nice, France from 19-25 August 2012.

The event will see over 500 cyclists compete across a 21,000m total ascent, covering 19 mountains and some stunning views.

Since Bradley Wiggins’historic first place finish in the Tour de France last weekend and his superb Olympic gold medal yesterday, both young and old have been dusting down their bikes and getting back in the saddle, to enjoy one of the UK’s most popular pastimes.

Are you feeling inspired? You don’t have to take on a mammoth cycling challenge to raise funds for us.

We’re holding a series of one-day cycle rides across the UK called Pedal for Parkinson’s. There are distances to suit all abilities and levels, so budding Bradley Wiggins’s are more than welcome to take part!

Pedal for Parkinson’s makes for a great family day out, so why not get into the Olympic spirit and join us in Stirling on 5 August and Newcastle on 9 September. We’ll give you a cycling top to make you officially part of Team Parkinson’s and a finisher’s medal.

If you’re feeling adventurous and would prefer a bigger challenge, we’ll be cycling from Londonto Paris from 4-8 September 2013. We’ll also be cycling to Rajasthan in India in November 2013, in a ride which ends at the iconic Taj Mahal.

If you’d like more information on any of our cycle rides, call our Events team on 020 7963 9305 or

Share your cycling stories and experiences with us by adding your comments below.

Educating professionals about Parkinson’s

A recent report from the Care Quality Commission (CQC) has shown more than a quarter of NHS and social services in England are failing to meet essential standards. John Bains, our Education Delivery Manager, talks about the impact of this report and what Parkinson's UK is doing to help.

The report by the CQC – established in 2009 to inspect and regulate health and social care services – is fairly damning. After inspecting 14,000 sites, including hospitals and care homes, they found many of them had problems with staff shortages and poor medicines management. At its worst, one nursing home was banned from admitting new residents because of concerns over how drugs were handed out.

Poor medicines management is something that people with Parkinson's experience far more often than they should and we have a whole campaign dedicated to it: Get It On Time.

Get It On Time forms a major part of the work that our national network of Education and Training Officers undertake. They go into hospitals, care homes and other organisations to help them understand more about Parkinson's and what their patients or residents need to make sure they are as well looked after as possible.

Last year our Education and Training Officers educated more than 19,000 health and social care professionals about Parkinson's. But, as the CQC's report makes clear, there's still plenty of work to be done.

Tell us your experiences so we can continue our work to make sure that people with Parkinson's get the best care possible.

Let us know if you, or the person you care for, have experienced any problems with care, and our Education and Training Officers can offer their expert advice and training. Contact us on

Together we can make a real difference.

Opening up European research

Every day new and important research discoveries are made and scientists publish their findings.

The research will probably have been publicly funded either through taxpayers’ money or charities and the researchers who wrote the paper don’t make any money from publishing it.

But unless you (or your workplace) pay a large fee, you won’t be able to access the research in full.

It’s a frustrating (and many believe) morally wrong system. And we firmly believe the results of publicly-funded research should be fully and freely available to all - take a look at our open-access publishing policy.

And now research funders are joining together to take a stand. This weekend, reports were circulating in The Guardian, that this could become a reality within 2 years.

What's more, on Friday the European Research Council announced that it is joining UK PubMed Central – an online biomedical research library that is leading the open-access revolution.

UK PubMed Central already has some heavyweight funders involved – including the Wellcome Trust, Medical Research Council, and of course Parkinson’s UK.

But getting the European Research Council on board, which has annual research funding budget of billions, is a major step forward for the open access movement.

Later this year the library will be re-christened ‘Europe PubMed Central’ encouraging other European funders to get involved.

And across the pond over 28,000 people recently signed a petition urging President Obama to make all federally funded research open-access.

But it’s not all about funders. Researchers have a massive part to play in the debate too.

We’ll be talking to UK researchers about open-access publishing at our research conference later this year and we’d like to tell them what you think about open-access publishing – so please tell us in the comments section below!

Heads in sand on social care

Yesterday saw the coalition government publish its plans for a 21st century care system for England.

The social care system is something none of us hope to encounter but millions of us will - either because you'll need care yourself or you have someone close to you who does.

At present, you couldn't design a worse system and it's been crying out for reform.

To some extent the Government has listened to concerns. The new social care White Paper means that if you're a person with Parkinson's in need of care, or a carer of someone with Parkinson's, your council won't be able to ignore you. There will be a basic national threshold of need over which anyone can expect some help, rather than 150 different councils each deciding what their own thresholds are.

There will be more national information and advice, as well as letting people share their views and recommendations on services, something which will help people with Parkinson's who have to fund their own care.

A Care and Support Bill will put more of this into practice. However most of this won't happen for 3 more years.

It all comes back to money.

The delay is down to the fact there's no real money to make these changes happen.

As always with social care it comes back to money: a system that's been starved of it for many years will just have to struggle on. The message from yesterday was it's not an economic priority - despite the costs to the NHS of having to pick up the pieces, and to people giving up work to care for others.

Similarly, there's no priority for the Dilnot report and its recommendation to cap the worst costs of care for people who have to sell their homes or bear years of funding their own care. Again the message from the Treasury is we can't afford to do anything to help - yet.

The Dilnot model helps people with modest assets and middle incomes, who stand to lose the most when faced with costs upwards of £35K for their care. Many people with Parkinson's fall into this category having faced years of covering their care costs.

Instead, 'pay when you die' screamed the headlines yesterday. The Government shifted attention to a planned nationwide scheme to help people defer paying care costs until after they die. The council would fund that person's care in return for recouping their costs when the person's home is sold. But in some areas councils already let people do this anyway.

The bottom line is that this isn't an answer to the politics of people having to sell their home to pay for their care.

What do you think?

We'll be digesting and responding to the Government's plans. We'd really welcome your views on this debate.

Do you agree or disagree with what the Government has done? What do you feel about people having to sell their homes to pay for their care? Is this an issue that's important to you? Add your comments below or email us on

And while we consider our next moves to end the care crisis, sign up to our Campaigns Network - we'll keep you updated on our social care campaigning work.

A really good call for people with Parkinson's

Last week, we launched a first in the charity world - pay-monthly mobile phones that donate money to Parkinson's UK. Here, Rachel Backshall, our Head of Business Development, explains how the project came about.

"It seemed like a very simple idea; develop a mobile phone that lets people donate to the charity when they use it. 2 years later, it is fantastic to see the project finally come to fruition.

"Phones for Parkinson's started out as the brainchild of one of our supporters, Charles Easterman, who had started to have trouble using his mobile phone after being diagnosed with Parkinson's. Charles set us the challenge of developing an app that would make phones easier for people with Parkinson's to use. While developing this app, it dawned on us that our foray into phones could go one step further.

"Mobile phones were increasingly being used by charities through various 'text to donate' schemes, but we wanted to turn the simple act of using your mobile phone into a way to raise funds - and Phones for Parkinson's was born.

"Having already worked with Talking Telecoms to look at how people with Parkinson's were able to use a smartphone - we decided to team up to see if we could make this project a reality.

"Using Talking Telecoms' existing relationship with Orange, we were able to strike a deal where four tariffs and four popular handsets could be offered to customers, with 45 per cent of the profits from the cost of the handset and ongoing monthly bills being donated to us. We hope to raise £50,000 from this partnership in the first year.

"Although the project is still in its infancy, the reaction to the idea has been fantastic and we are already looking into how we can develop the project further, expanding into pay-as-you-go sims and other apps and accessories.

"We are really excited to see how Phones for Parkinson's will grow and with the number of active mobile phones in the UK now outnumbering those who live here, we can finally say that it really is 'good to talk'."

To find out more about Phones for Parkinson's, visit the dedicated pages on our website or call 020 3476 2626.
Paul Jackson-Clark, Charles Easterman and Rachel Backshall at the launch of Phones for Parkinson's

Duplication in Parkinson's research? Not on our watch

We’re often asked about duplication in Parkinson’s research, and why seemingly similar projects are being carried out by different research teams around the world.

A prime example of this is stem cell research.

In August last year
Parkinson's UK-funded scientists succeeded in growing new nerve cells with a rare inherited form of Parkinson's.

This was followed swiftly in February this year by
a research team in the US who announced that they too had made skin cells from nerve cells with genetic Parkinson's.

On the surface, these 2 achievements look identical. But dig a little deeper and you'll find a subtle but crucial difference.

Our researchers grew nerve cells with a mutation in alpha-synuclein, whereas the US team were studying cells with a change in the Parkin gene – 2 very different genetic mutations that have vastly different impacts on the nerve cells.

At Parkinson's UK we work hard to make sure every penny raised for research works as hard as possible.

Our rigorous research funding process involves international experts and people affected by Parkinson's which helps us to avoid duplication and make sure the projects we fund are meaningful to people living with condition.

We talk to other key players in the research community - including pharmaceutical companies, researchers, other funders and government bodies - to keep us right at the heart of international Parkinson's research.

And we're helping researchers to share their knowledge and work together.

Our research conference brings the UK Parkinson's research community together to share and discuss all the latest research.

And we provide funding to researchers for themed research workshops to bring people in their field together and develop new ideas.

So next time you see a familiar piece of research news, look a little closer – it's probably more exciting than you think.

Tell us your thoughts on Parkinson's research by visiting our forum, emailing or adding your comments below.

Volunteer John is 'Ultimate Local Hero for 2012'

One of our amazing volunteers, John Lange, from Stirling, was honoured as 'Ultimate Local Hero for 2012' and 'Charity Hero for 2012' by his local radio station, Central FM, last week.

John, 51, was diagnosed with Parkinson's 7 ago. He set up the Forth Valley Young Parkinson's Group a year ago and has been a tireless fundraiser and campaigner for Parkinson's UK.

John received his award at a special ceremony celebrating people who have contributed to make their local area a better place.

But his nomination had been a surprise kept by his wife and close friends. He didn't know he was up for an award until his name was read out.

"I do what I do to help others with Parkinson's," said John.

"I've had great support from wife, kids and granddaughter, my brothers and sisters and others who don’t even know me. I am deeply honoured."

Volunteers' Week 2012 ends today, 7 June. It celebrated the fantastic contribution that millions of volunteers make across the UK.

In 1969, our charity was started by a group of volunteers and they are still at the heart of everything we do.

Find out about opportunities to volunteer or tell us your volunteering stories

23andMe patents Parkinson's gene

This week the 'personal genomics' company, 23andMe, announced their first patent on a discovery from their web-based Parkinson's study.

A patent is an exclusive right given by law to inventors to make use of, and develop, their inventions for a limited period of time.

23andMe's patent relates to a
subtle change in the genetic code that may reduce a person's risk of developing Parkinson's.

In science, patents can be used to protect new discoveries, like potential drugs, from being exploited by others. This means patented ideas and discoveries can be bought, sold and invested in.

Over 6,500 people with Parkinson's from all over the world have taken part in the study so far. Participants fill in an internet survey about their
symptoms and lifestyle and provide a sample of saliva containing their DNA.

It's very
rare for Parkinson's to be inherited. But access to such a huge amount of information has allowed the researchers to pinpoint genetic changes that slightly affect the risk of developing the condition.

The question of whether genetic discoveries can be patented is a hot topic that's
currently being debated in the US courts.

There are
2 sides to the story. Companies like 23andMe argue that patents are the best way to translate discoveries into new treatments. But critics say patents hinder the progress of academic research.

What do you think about patenting Parkinson's genes? Tell us your thoughts by leaving a comment below or email us on

Peers visit the Parkinson's UK labs

Peers from the House of Lords visited our Parkinson's UK funded research labs at the University College London’s Institute of Neurology yesterday (23 May).

The Peers are all members of the All Party Parliamentary Group (APPG) for Parkinson's.

The APPG helps to raise awareness of Parkinson's issues in parliament with MPs, peers and other policy makers.

As well as a tour of the lab, they met researchers and discussed the huge range of research being undertaken into Parkinson's at UCL.

One of our researchers, Professor Nick Wood, talked about how the latest gene discoveries are allowing his team to piece together the steps in the pathways that lead to Parkinson's.

Other presentations included research into how useful of treatments such as deep brain stimulation and posture correction approaches are for people with Parkinson's.

Baroness Gale (pictured above with a researcher at the labs), chair of the All Party Parliamentary Group on Parkinson’s said:

"This was a fascinating opportunity for members of the Parliamentary Group to see some of the research that’s being done into the causes and treatments for Parkinson’s.

"This gave me an insight into how much progress has been made, but also what still needs to be discovered."

Carrying the torch for Parkinson's UK

The Olympic Flame arrives in the UK today and we wanted to congratulate the fantastic torchbearers who've been selected because of their work for Parkinson's UK and supporting people with Parkinson's.

There are 8,000 torchbearers who will carry the Olympic Flame across the UK. They have been selected for being inspirational figures in their local community.

Congratulations to:
  • David Denmead (pictured right), carrying the Flame on 19 May (Day 1) through Stenalees
  • Janet McCulley, carrying the Flame on 19 May (Day 1) through St Austell
  • Lilian Quinn, carrying the Flame on 19 May (Day 1) through Lanivet
  • Jeff Tottle, carrying the Flame on 21 May (Day 3) through Porlock
  • Jeremy Adams, carrying the Flame on 21 May (Day 3) through Washford
  • Norma Ashton, carrying the Flame on 24 June (Day 37) through Marsh
  • Michael Wise, carrying the Flame on 12 July (Day 55) through Fontmell Magna
  • Sue Blunden, carrying the Flame on 16 July (Day 59) through North Bersted
Carrying the Olympic torch is a fantastic honour and we are proud to see a selection of our dedicated volunteers have been chosen to carry this icon on its journey around the UK.

We rely on our network of committed volunteers to help us with our vital work supporting people with Parkinson's and their families and carers. Congratulations to everyone who has been chosen.

Do you know any other Parkinson's UK volunteers who’ve been chosen to carry the Olympic Flame? Tell us about them by emailing

Paul pedals for Parkinson's: 3,106 miles down, 7,144 to go

Paul Smith's China challenge begins
This week one of our fundraisers Paul Smith, 36, from Forest Row, East Sussex, completed the first 3,106 miles of his epic cycling challenge from China to the UK.

We want to congratulate Paul on this fantastic achievement and wish him the very best of luck for the remainder of his amazing 10,250-mile challenge, which is raising money to support our vital work.

Paul began his journey on 6 March from Fujian, China and is due to arrive at the finish line in East Sussex at the beginning of October. He is cycling for his Dad, Mike, 65, who was diagnosed with Parkinson’s in 1994.

The next leg of Paul’s challenge will see him cycle into Kazakhstan, Uzbekistan, Russia, Ukraine, Poland, Czech Republic, Germany and France, before arriving back home.

Sponsor Paul online and follow his progress on his blog or via Twitter.

Are you inspired by Paul’s story? Why not join us one of our overseas events later this year. Our intrepid fundraisers will be trekking across Peru and Jordan, as well as cycling from Vietnam to Cambodia.

Or if you’d prefer like to stay a little closer to home, join us on our Pedal for Parkinson’s cycling events across the UK this summer.

We couldn’t do our vital work without the support of all of our fantastic fundraisers – from cycling across China, to cake sales in Coventry. Every single penny raised helps us in our work to find a cure and improve life for everyone affected by Parkinson’s.

Tell us your 2012 fundraising stories. Email us on


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07 July 2010

on the run

I have several posts ready to publish but I'm writing on the run and not able to publish them with the pictures I want to share.  So, for the time being, here's some random thoughts:
  - Gaining weight sucks and I think I've mentioned that on here recently.
  - Running out of muscle relaxers and pain killers at the same exact time sucks.
  - Wearing an SI support belt on my waist is heaven sent.
  - The muffin top being squeezed out the top of this beuty belt is disgusting.
  - Taking prednisone (anti-inflamatory for buldged disk) makes me energized.
  - A weekend with friends was wonderful.
  - Rain half the weekend smolders the fireworks plans a bit.
  - A four-day work week is awesome!
  - Missing my friend who hasn't even moved yet makes me sad.
  - Having a friend save me from my insanity was heaven sent.
  - Knowing the anger my life sometimes brings to God scares me!
  - Being able to call out to God for wisdom is heaven sent!
Okay, that's it.  It has been a hard few weeks.  Back pain has really just brought lots of negativity to my life.  Hearing from the doctor that my activity level just doesn't allow healing royally sucked.  I have no more time off since going to Ethiopia.  Having hope that a few new things will work sounds wonderful.  And honestly digging back into the Word, which I've been neglecting, has put me back on pace.  It feels so good to have sunshine in my life even though it's bleak outside.

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

1 comment:

Kristine said...

So much going on!! Praying for you! And prednisone makes you HUNGRY. Doesn't help with the weight gain... hope that you're feeling much, much improved! Love coming back here to check up on y'all!!

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Thursday, December 29, 2011

Spend the New Year on the Borealis Space Station! with Vijaya Schartz

None of these boring New Year parties for sci-fi romance fans. This is the true item, the Borealis Space Station. In this decrepit tin bucket at the fringe of conquered space, in the twenty-seventh century, things are not as rosy as in the other space stations we are familiar with. This is not Babylon Five, far from it.

The station is old and falling apart. It's a penitenciary for the most dangerous intergalactic criminals. It's hazardous to your health, ruled by a dictatorial Trans Planetary Protectorate, and there is a rebellion brewing in the neighborhood.

Reading this series is like watching episodes of your favorite TV sci-fi flicks, but with a love story in each of them. All the books have the same type of covers. The first two books are anthologies containing three stories. The last two are individual novellas, from Vijaya Schartz and Michelle Levigne. This series was initiated by the publisher, Desert Breeze Publishing

Here is the order of the entire series, although each story is independent of the others (like in most sci-fi series episodes).

BOREALIS: A SPACE ANTHOLOGY - PI Barrington, J.Morgan, Gail R. Delaney
BOREALIS II: A SPACE ANTHOLOGY - Stephanie Burkhart, Esther Mitchell, Shea McMaster

BLACK DRAGON is a novella, like all the novellas from different authors in this series, the story is set on the Borealis space station.

A gambler is cheating in a den of the Borealis space station, and Lieutenant Zara Frankel intends to catch him in the act. She always gets her man, but this one could prove more than she can handle.

Captain Czerno Drake, code name Black Dragon, has come under cover to break his innocent uncle from the most secure penitentiary in the galaxy, on the Borealis space station. He will stop at nothing to succeed, even enrolling the help of the lovely straight arrow TPP enforcer. When Zara realizes that she’s been used by a shrewd but seductive rebel, her reaction surprises everyone, most of all herself.

"I like the balance of humor and danger in this story, and the action kept me glued to the pages... I enjoyed watching as suspicion turned to admiration, and admiration became the first flickers of love between Czerno and Zara... Pick up a copy of Borealis: Black Dragon, by Vijaya Schartz, and enter a world of adventure, romance, and a spoiled cat named Marshmallow." Long And Short Reviews 4½ books - sensual 4½ books - sensual

"Vijaya Schartz is known for her strong female characters and Zara is no exception... gives the reader lots of action and a sweet love story." Single Titles Review - 4½ stars

This novella is only $2.99 everywhere in eBooks. Download it today from:

Wishing you a fantastic year in 2012 and beyond.

Vijaya Schartz
Blasters, Guns, Swords, Cats, Romance with a Kick
Find Vijayas other books on
AMAZON - B&N - ARe - etc.

Monday, December 19, 2011

Video Trailers!

"Loving the Norseman" - a post-plague romance!

"Loving the Knight" - the story continues...

Tuesday, December 6, 2011

The Windsor Diaries - Book 1 - Victorian Scoundrel

REVIEWS: Reader's Favorites: 5 Stars, Molly E: She grips the reader instantly, and keeps them hooked until the last page... I highly recommend this with highest of 5 stars, and I can't wait until the second Windsor Diaries installment releases!

Pen & Muse Reviews: A wonderful historical, paranormal steampunk read this was. The author really had me hooked from the first chapter... I loved the humor in this read along with the historical facts.

Long & Short Reviews, 4 Books, Larkspur: It’s the perfect romance if you love the proper etiquette of the Victorian era mixed with the fantasy of time travel. This is the first in this new series and I’m excited to read the next episode."

Scorching Hot Reviews: 4 Stars:
Overall, a fun and breezy read that really doesn’t take itself seriously. With sweet and funny characters, the tale was enjoyable and engaging. A fantastic edition to the steam-punk genre....bring on book two :)"

Hope Chest Reviews: 4.5 Stars:
Victorian Scoundrel was a nice easy read, but sometimes that's just what the doctor ordered. The pacing was pretty snappy with the plot moving right along, while the dialog was sharp and sometimes witty

BLURB: It's 2011 and compressed natural gas has taken over form the coal producing steam machines of the Victorian Age. Alice Windsor, Princess of York, follows her mischief-making cousin, Prince Edmund of Wales back to the past and 1851 where Prince Albert is hosting Britain's Great Exhibition.

Alice soon discovers Edmund has struck up a friendship with their great-grandfather, Prince Albert, and his mischief making entails leaving a dinosaur-sized footprint in history.

She also meets Grayson Kentfield, Earl Swinton, and the Prime Minister, Sir John Russell. The Prime Minster finds her odd, to say the least.

It's only when Alice falls for the handsome Earl Swinton does she realize the dangers of time travel. How can she give her heart to a man from the past while striving to stop Edmund from changing time with his forward thinking ideas?

Tired and thirsty, she finally made it to the courtyard. Edmund was nowhere to be found. She should have expected it, really. No doubt he was in the palace filling their great-grandfather's head with forward-thinking ideas. She crossed her arms, staring at the steps.

Several carriages waited nearby. No one in their right mind would let her into the palace looking like she did -- like she had just stepped out of the gutter.

"Excuse me, who are you?"

Alice spun around to find herself face-to-face with two gentlemen who stood near one of the waiting carriages. One gentleman was older, Alice guessed in his fifties, one younger. The older gentleman stared at her like she truly was a guttersnipe, but the younger one -- he was tall, with chiseled cheeks and sensitive hazel eyes. His broad chest filled his suit well and he measured her with a cool, appraising look that hinted at... appreciation. An uncomfortable feeling washed over her. Never had a man's stare made her feel so... warm.
"Well?" asked the older gentleman.

Alice straightened her posture with her usual royal dignity and took off her glasses as she always did when she introduced herself. "I am Her Royal Highness, Princess Alice of York."

The men looked at each other, at her, then back at themselves. She wasn't sure if they were befuddled, confused, or wanted to laugh. Finally, the older gentleman spoke. "Princess Alice is seven years old."

Alice bit the inside of her lip, realizing she had totally forgotten where she was due to the younger gentleman's attention. She slid her glasses back on. "Simply call me Alice -- Alice Windsor."

"And you may call me Prime Minister."

"A GENTLEMAN AND A ROGUE," Book 2 of The Windsor Diaries will be released NOV 2012.

Monday, December 5, 2011

KINGDOM OF ARNHEM - fantasy romance with knights, romance, magic, and war

Nicole Zoltack provides a well crafted story that focuses on emotion and anticipation. Not only a book that a young adult would enjoy, but a woman of any age who wants to enjoy romance and a strong heroine and how she gained her strength. Em Epe - Dark Diva Reviews

With sword fights, passionate love, mythical creatures, and courtly games, Woman of Honor is my kind of book... Blending history with fiction, her writing is full of plot and adventure and her characters are strong and believable....In conclusion, I thoroughly recommend this book for everyone that enjoys fantasy, romance and adventure! Book Reviews by Aubrie

"Full of action and adventure, Ms Zoltak has created a wonderful tale which keeps the pages turning right up until the heart stopping conclusion and leaves the reader wanting more." Happily Ever After Reviews

Aislinn of Bairbhe dreams of becoming a lady knight to honor the death of her fallen brother. To her mother's horror, King Patrick grants Aislinn's wish and she begins her long years of training.

Despite the mockery of the other pages, and the disdain of Prince Caelan who also trains to be a knight, Aislinn commits herself to her dreams and embarks on a journey of self-discovery and bravery. Through the years, Aislinn and Caelan grow from sparring classmates to good friends. They both know that someday Caelan will marry for the sake of the kingdom, but even that cannot keep them from falling in love.

The threat of war with the Speicans is a constant threat, and one that grows more frightening as she and Caelan train toward their eventual knighthood. Aislinn has committed herself to serving Arnhem, and has promised herself as King's Champion when Caelan claims the throne. She is willing to give up everything... her childhood, her life, even her heart for Arnhem. No matter the pain it brings.

"Is there anyone else that you have feelings for, Aislinn? Is that why you don't want to be with Geoffrey?"

Aislinn blinked, thinking about his question. "I haven't thought about such things. I'm too focused on becoming a knight. That's all I'm worried about."

Caelan pushed back his chair and stood. With him on his feet, Aislinn had to tip back her chin to look him in the face, he had grown so much in the years since they'd first met. "There is no one else?"

She shook her head.

Caelan took a step closer to her, stepping so close he only had to whisper for her to hear him. "What if I told you that Geoffrey isn't the only one who favors your company?"

His closeness overwhelmed Aislinn and she tried to take a step back. Her shoulders bumped the bookshelf behind her and several books shifted, but none made enough noise to draw the attention of anyone else in the library. Caelan lay a hand against her cheek, his thumb beneath her chin, and with a gentle touched, forced her to look at him.

Her heart pounded hard in her chest like a caged bird and Aislinn caught her breath.

"Caelan," she whispered softly, but before she could say more, his lips covered hers.

Aislinn froze for a second as he held his mouth against hers, then heard herself sigh when he pressed closer and moved his lips. Aislinn's eyes fluttered closed and she raised her hands to lay them on his chest, feeling his heart pound as hard as her own. Then reality snapped at her and she shoved him away.

"Stop it!"

She pushed past the prince and rushed from the library, with several squires and younger pages turning at her escape. Aislinn ran to her room and slammed the door shut. She leaned against it and slid to the floor, her head in her hands.

How dare he kiss me!

But the worst realization was that she'd kissed him back. Even the memory now made her insides tremble and her hands shake.

Aislinn stared into the empty space of her chamber for several minutes, trying to push aside the memory that refused to leave before she finally stood. Completing her work would occupy her mind. She collapsed onto her bed and promptly fell asleep instead.

Purchase links:

Purchase from DBP website

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Purchase from ARe

It is strongly recommended to all those souls who love a mixture of romance, history, and fantasy. The real battle and the quest for true love make this book a must read." Reader's

"I loved this book!... Sir Geoffry is the noble night with a vulnerable heart. Jenanna is tough, yet feminine; independent, but lonely. And Celestia turned out to be a complete surprise as to what I had expected.... Can't wait for the next." Shawna Williams, author of No Other (Posted at Amazon)

Filled with bitter foes, magical displays, a quest for true love in many cases, and a dash of enigma, Knight of Glory is a true delight. Raven and the Writing Desk Review Blog

Sir Geoffrey, along with some companions, has been sent away from Arnhem, entrusted by Queen Aislinn for a special mission, and has to leave behind the mysterious lady Celestia. On his journey, he uncovers seeds of a sinister plot, learns a horrible secret, and makes a new friend in exile Jenanna.

Their mission completed, Geoffrey and his companions rush to two different kingdoms to ask for aid. Danger and betrayal lurks around every corner, and even allies have secrets that could prove deadly. Geoffrey's feelings for Celestia grow and wane. After learning some of Celestia's secrets, he begins to have second thoughts about his love for her and is even drawn to Jenanna.

Rumors abound that the Speicans have enlisted a mage of their own, to work unspeakable, forbidden magic. The war between Speica and Arnhem has just begun. Will Geoffrey survive the battle to live another day and discover which woman he truly loves?

When twilight fell, Geoffrey halted the party. "Let us rest now. Another day, two at most, and we will reach Lochmarsh. We need to prepare ourselves, mentally, physically, and spiritually."

Jenanna pursed her lips. If she thought it too close to night she refrained from mentioning it.

Geoffrey reached into a bag tied to Swift Flight's saddle and pulled out a blanket. "Here, milady, for you to rest upon."

Jenanna stared at the cloth. "I do not need your compassion."

"I offer it freely."

She stared at him, sizing him up, and grabbed it. Placing the blanket far from the water, she laid on it.

Geoffrey watched her for several moments before Raulin's snores reached him. He turned to Jacob. "You certain that I need not keep watch?"

Jacob stared at him with listless eyes and blinked twice.

Geoffrey took that as a negative. He laid down, using a rock under his head, but could not sleep. He glanced over at Jenanna. Although her eyes were closed, he knew that sleep did not claim her either. "Jenanna. I think I have been visited by the Kelpie."

Her eyes flew open. "When?"

"Last night. I dreamt of it. At least, I think I did."

"That can only be an ill omen." She shivered as her gaze fell upon the water. "We should continue on."

"Raulin needs his rest. So do I for that matter. We shall be fine." I pray...

"I hope so." She rolled over, her back to the stream, and to Geoffrey.

Geoffrey slept and woke a short time later. The others still slept, and Jacob paid him no heed. He slowly climbed to his feet and stretched his back. Turning, he spotted a small creature in the near distance. Walking toward it, he realized It looks like a lost pony. Its fur was grey black, and its main dripped constantly. The fur seemed sleek, and Geoffrey reached out to find out if this was the case. The pony was cold, deadly arctic, and Geoffrey's fingers froze to it, he was unable to move his hand away.

"No! Geoffrey, you have to stop touching it!" Jenanna cried out. She gripped his arm and tugged hard.

He tried to turn his head to look at her, but even his neck muscles tightened, frozen. "I can't move!"

Jenanna pulled and yanked some more, but Geoffrey could not be freed.

The Kelpie neighed, a loud sinister sound, and its saliva dripped, turning into ice as it left his foaming mouth. It blew air out its nostrils, the breath turning to fog, giving the land an eerie, unearthly feel.

Jacob and Raulin rushed over. They attacked the creature with their swords, but the horse bucked and kicked, and even with such wild, reckless movements, Geoffrey remained attached.

"Take this, foul creature!" Jenanna shrieked, shoving a flame tree branch into the creature's side.

The Kelpie wailed and neighed. With a sudden rush of heat, Geoffrey collapsed. A loud splash sounded as the three surrounded his fallen form.

"What was that?"

"Not now, Raulin! Now is the time for a larger fire. Build one," Jenanna commanded. "And you, Jacob, the healer, aye? Do you know how to heal freeze burns?"

Jacob's face looked stricken in the pale flickering firelight. "I can try."

"Try isn't good enough. You must succeed." She knelt down and placed Geoffrey's head in her lap. "It will be all right, Geoffrey."

"S-so c-cold." Geoffrey's teeth chattered so loudly he barely heard his own voice. His body shook uncontrollably, the chills spreading from his hand to the rest of his body, lowering his core body temperature and slowly freezing the blood in his body. "God's T-teeth!"

The fire roared to life, greedily licking up the small remnants of grass nearby. "Good, Raulin, now go fetch my blanket." Raulin didn't even pause to nod.

Jenanna grabbed Geoffrey's wounded hand and tried to warm it with her own. Her fingers felt red hot, compared to his iciness, and her fingers kneaded his skin. "Quick, Jacob."

Jacob nodded and began to mutter incantations. He placed his hand above Jenanna's and Geoffrey's, and a bright yellow orange glowed from his hand.

As the cold moved closer to his heart, Geoffrey's shivering worsened. His body buckled from the severe shock cold waves.

Raulin returned and threw the blanket on Geoffrey, but it did nothing to help the nearly frozen knight. Jacob's voice grew louder, and the light responded, turning brighter. Jenanna moved her hand away, and Jacob laid his on Geoffrey's. Immediately, Jacob pulled his own away. "Too cold. My God, he's frozen!"

Purchase links:

Purchase from DBP website

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Every book left me craving more and I'm so glad this one continued the hook. Kingdom of Arnhem exceeded my expectations! By Me Posted on Amazon

This was probably my favorite of the three books in this series....Enthralling and exciting, the third installment to the Kingdom of Arnhem series was a page turner. For all fantasy, historical fiction, and romance lovers alike, this book's the book for you. From Bree on Goodreads

The Mystical Conch Shell of the Sea has been stolen, and it's up to Selliki, the selkie, to get it back. Selliki sets across the continent of Alethereia to find Arnhem, and Gabrael, the mage she loves. Selliki knows that no union between a selkie and a human have ever had a happy ending, but neither can ignore their feelings. Each night, they experience terrible, real dreams that show how doomed their love is.

The final war between Speica and Arnhem is threatening the entire world. Lucifer has aligned himself with Speica and wants nothing less than to bring about the Apocalypse before its time. In the last battle, cowardice is revealed, promises are broken, and many people die. Trolls fight icthyocentaurs, dwarves armed up against the Drow, angels against demons. Only one kingdom will prevail; that is, if the world doesn't end.

Night came, and they set up camp. Gabrael closed his eyes, and sleep claimed him. When he opened his eyes, all he could see was white. Something appeared in his hands -- Selliki's seal skin. He shoved it into a trunk that materialized out of nothing and locked it.

Selliki entered a few minutes later, looking lovely in a long blue gown. "Come, dear, it's time to be married."

Days passed, weeks, months, years. The two were extremely happy together and even had two children, a precious little girl and a strong, hardy son.

One day, Gabrael practiced magic with their daughter, Yara, on the beach. "The fire comes from within, deep inside your belly. Just feel it, move it up to your throat and blow." Gabrael demonstrated as a shot of flame exited his mouth.

Yara clapped her hands. "I want to try!" She furrowed her brow and blew. Nothing happened. She opened her mouth to try again but her concentration was distracted. "Mama, why are you running?"

Gabrael glanced behind him. Selliki ran toward the ocean, something dark in his hands.

Raphiel hurried over. "I found your trunk, Father."

Gabrael muttered a curse and jumped to his feet.

"What's wrong, Father?"

"Where is Mama going?"

Gabrael ran toward Selliki. He reached out with his arms to stop her, so they could talk, but his arms touched air. She had already dived into the water.

Gabrael stood there, by the water's edge, all night long and for the following day, before the knowledge came to him. Selliki had forsaken him. She was never coming back.

A single tear ran down Gabrael's face and dripped off his nose onto the sand. He turned his back on the water and cried. Maybe love isn't enough. How can I ask Selliki to abandon her very nature?

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Thursday, December 1, 2011

Minx Tobin Murder Mystery Series--Case 2

Case Two--The Ill-gotten Insurance, by Susanne Marie Knight

Who is Minx Tobin, you ask? Minx is a fitness instructor newly relocated to Los Angeles, California, who has a knack for solving puzzles--puzzles concerning dead bodies. For fun, romance, and... unexpected corpses, follow her adventures in this murder mystery series!

An odd string of coincidences leads Minx Tobin to an old friend, Bill Gutierrez. Only Bill died five years ago. Before Minx has a chance to question the man, he turns up dead... again, with a slip of paper in his pocket with her name on it. Whether she likes it or not, Minx is involved in another murder. Will the Case of the Ill-gotten Insurance turn out to be deadly for her as well?

Los Angeles homicide lieutenant Gabe Harris regrets that the fitness trainer who piqued his interest is a murder suspect once again. But at least he has a legitimate reason to see Minx. Maybe he can even convince her to go out with him. And maybe he can prevent L.A.'s newest murderer from adding Minx to his... or her fatality list.

Praise for The Ill-gotten Insurance:

4 hearts! Susanne Marie Knight pens another thriller in this series. The lives of the rich and famous overlap with those who work for a living. Character building and dialogue are great. The suspense as Minx confronts a killer is edge of your seat. For a woman whose intuition and people skills in a case are superb, Minx doesn't seem to do well communicating with Gabe. He's a macho man with a heart of gold but doesn't let Minx see much of his better side. Gabe's friend, Sgt. Antonio Atwell and his family are a priceless addition that really give the tale a boost. The author does a great job blending everyday people, some of whom are a bit creepy, with the suspects. Associates we meet at the fitness Emporium, especially the guys, will pique the memories of those forgettable dates we had before finding Mr. Right for many women. This is a fun series worth a read. Dee Dailey, The Romance Studio.

The Ill-gotten Insurance, the second installment in the Minx Tobin Case books, will not only keep you turning the pages until you reach the end of the story, it will have you seeking out the first of Ms. Knight’s Minx Tobin Case books if you have not already read it. The author’s fluent writing style which brings her characters alive, warts and all. Her ability to capture the outrage of the rich implicated in the murder along side her depiction of the hero and heroine and their supporting cast creates plenty of friction as some of those characters are simply ‘way-out’ weird. Ms. Knight offers characters you will want to get to know even better, characters you are still rooting for at the conclusion of The Ill-gotten Insurance. The story is packed with a gallery full of suspects and enough twists and turns to satisfy any reader. Fennel, Long and Short Reviews.

I don't normally read mystery, but I'm enjoying your book, Susanne Marie Knight. I just started it a while ago and already I'm hooked.--Jan L.

Minx and Gabe are a match made in heaven. I love mysteries. Combined with romance, they are irresistible. Luck in all you do.--Patricia A.

Minx and Gabe need to get together!!--C. K.

Minx placed Harris' coffee in front of him and pulled out napkins from the table dispenser. There. She'd done her hostessing duties. Sitting across from him, she reached into her bag and got out her power bar.

"So, Lieutenant, what's up?"

Harris took a sip, then set the cup back down. "I've never been at the Elite Exercise Emporium before. Nice place. Do you think I should take out a membership?"

She blinked back surprise. Surely this wasn't his official business?

Peeling the wrapper off the bar, she replied, "You look buff enough, Lieutenant."

"Is that a compliment?"

She tilted her head at him. "Do you want it to be?"

What was going on here? Were they actually flirting with each other?

As she nibbled on the end of the granola power bar, she studied him. His odd combination of short dark and light grey hair swirled in waves over his head. A dark lock tumbled down over his high forehead. One renegade curl strayed appealingly around the curve of his ear.

He gestured with his large, well-formed hand. "That your lunch?"

"It sure is. Are you hungry? I've got two more bars with me."

He was a man that didn't smile much. With his job in the Los Angeles Police Department, there probably weren't many opportunities for smiles. But when he did let loose and show those pearly whites, despite herself, she seemed to turn into one of those silly adolescent girls she'd disparaged just a minute ago.

Harris not only smiled, but laughed. A deep, hearty, masculine laugh. His laughter attractively crinkled the skin around his eyes. Otherwise, his tanned face was unlined. Prematurely grey, that was what he was. Maybe that trait ran in his family.

"No, thanks. That granola bar looks like Fido's dog food to me."

The laugh and the smile disappeared as quickly as they surfaced. He must've been getting ready to lower the boom. Official police business was rarely good.

She swallowed down a bit of apprehension.

Book Trailer for The Ill-gotten Insurance:

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Susanne Marie Knight
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Tuesday, April 27, 2010

too true mate.

hate to be a sell out but this is one of my fave songs atm.
makes me wannaaa dannce.

No speak americano - Yolanda be cool ft DCUP

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Friday, 29 April 2016

The joy of friendship. Or, how one human can make the sun come out.

Everyone is talking about the weather. It continues bitter and bleak and bolshie. It is almost May, and humans and horses are rugged up as it if is deep mid-winter. The sky is the colour of shattered dreams and everyone I meet sighs rueful, resigned sighs. We must bugger on, but, like an old mare out at pasture, we long for the sun on our backs.

The Beloved Cousin calls, and, in my heart, the sun comes out.

I wonder about the power of friendship. Does it mean more now because I am deep in the woods of the middle of life? Is there something about heading towards fifty that makes a human cherish the kindness, laughter, wisdom and general loveliness of someone known for thirty years? Do I feel a passionate gratitude for those staunch friends because I know now how rare a gift they are? Or is it that the accumulation of memories, happy and sad, comical and tragic, build up into a soaring cathedral of wonder? Perhaps it is all those things.

We make plans. We love the plans and grow as excited about them as if we were girls. She tells me a funny and naughty story which begins with the thrilling words: ‘You must never repeat this.’ (We have kept many, many secrets over the years.) We range over some mutual friends. So and So gave a party; Such and Such has an enchanting new girlfriend.

We discuss the Euro-argument and the anti-Semitism row in the Labour party. We contemplate, rather gravely, whether the slow-down in China is going to capsize the world economy.

We fall into an antic, delighted, passionate gallop through Pride and Prejudice. We both love Jane Austen like a sister, and I am re-reading Pride and Prejudice for the second time in six months. ‘It’s like having your best friends to stay,’ I say, laughing. ‘I love spending time in their company. It’s like having you to stay. I breathe a huge sigh of relief and pleasure.’ We delve deep into the psyche of Mr Darcy. It’s not just pride, we decide, it’s that he is a classic introvert. We run through two or three of our favourite scenes. Some of them we can repeat word for word. ‘We are such geeks,’ she says, gusting with laughter.

Then, just for fun, we have a quick canter through Jane Eyre and Wuthering Heights and the Sword of Honour Trilogy.

She tells me something perfectly adorable which The Smallest Cousin has said, and I am so shaken with hilarity that I can’t speak, but just gasp with laughter down the telephone.

We run through a thorny problem I had not long ago which has turned out to lead to something much, much better than I could have hoped. ‘It’s so funny,’ we say, ‘how those things which you think are disasters so often end up being the best thing that could have happened.’ We are old ladies, and we have learnt a lot of life lessons, most of them the hard way.

Imagine that, all in one conversation.

As always, she leaves me better than she found me. She lights up the day, so I don’t care any more about the horrid weather. She has the amazing talent of growing more wonderful with every passing day. She is not static or stuck; she does not rest on her laurels or grow complacent. She’s always thinking of new things and figuring out the conundrums of the human condition and wading into the thorny reaches of the psyche. She always has a new theory for us to ponder, or has refined an old one and given it a little lemon twist. She is a remarkable human, and she is my friend.

That is sunshine, indeed.

  1. It would, indeed, be lovely to have a friend like that!

  2. Thank you for this Tania, how right you are about friendship. Rather cheekily, I've pasted a paragraph to email to my sister, also my best friend over many many years. As ever, you've expressed my stumbling thoughts so beautifully and I couldn't resist sending them on. Many thanks. Gill

Your comments give me great delight, so please do leave one.

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Love and Theft’s Eric Gunderson Welcomes Baby Boy

Love and Theft
Angela Weiss, Getty Images

Eric Gunderson of Love and Theft is a first-time father as his wife Emily gave birth to a baby boy on Sunday (March 10). Everyone is said to be doing well, but the couple won’t be at peace at home anytime soon, as the new arrival was born two months early and is in the NICU.

“Eric and Emily are moved by the tremendous outpouring of warm wishes from their fans, family and country radio,” a representative for the band told People. “They look forward to sharing more updates soon.” The baby’s name is Camden William. It’s the first child for the 28-year-old singer and his 26-year-old wife.

The couple revealed the pregnancy to Taste of Country in November, and one month later shared that it was a boy they were expecting. Camden was scheduled to arrive in May. No further details as to why he showed early were available at this time.

“He arrived earlier than his expected May due date and will be spending some time in the hospital, but mother, father and baby are all doing well,” the rep added.

The couple married in April 2010.

In a strange way, the early arrival works out for the duo. They’re set to join Tim McGraw on the road beginning in May.

Next: See All Country Babies Born in 2013 >>

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Leaf Layers Earrings

Leaf Layers Earrings

Leaf inspired earrings offer a big look while being comfortable to wear!

The raised design adds depth and texture to the surface of these hinged pieces.

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    Product Description

    Sterling silver earrings have a raised texture rolled into the metal giving depth and design.  The long dangle earrings are light and comfortable to wear while offering a larger look.

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KLX 110 Manual
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Friday, July 22, 2011

Beach Sight Word Games-2nd/3rd Dolch List

I just realized that I never did this for my friend that is teaching summer school.  Hopefully she can still use it :)  I am also trying to embed the Google Docs for the first time, so if it doesn't work, please let me know.

Here is the beach sight word game with the 2nd list words:

Here are the 3rd grade words:

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Monday, January 11, 2016

Bernie Sanders

There has always been a political aspect to my blogging here. Fellow preschool teacher Courtney Gardener once wrote this on Facebook, "Some people say they don't like Tom's political posts, but I don't see a difference." I was happy to read this because I don't see a difference either. I don't know any other way to be an advocate for children and education. Public policy has a direct impact on both and to the degree I can influence it, I try. We all should, frankly, and part of the way our process is built is that the only way forward is through debate, which usually translates as argument.

I know many who refuse to engage in politics on social media because of how easily it can devolve into name-calling and general vitriol. And that's often the way it goes in self-governance. It always has. The thing is, if it's going to work, we all need to take that risk and do more than vote and a big part of that is what I think of as the "deep democracy" of talking to your friends and neighbors about the issues of the day. For me, there is no better place than in my online communities.

I strive to approach my arguments with a sense of goodwill and expect the same from you. First we are humans, then we are family or friends, then we are citizens. I'll try really hard to not insult your intelligence, play "gotcha," or resort to name-calling and I hope for the same from you. And I will never expect you to violate your morals, nor should you expect me to violate mine.

That said, when you invoke your morals as a political argument, I will immediately concede that you have "won," and I understand that you will do the same should I invoke my morals. You see, there is no political agreement to be had when your morals are your argument: if you are morally against something, you simply cannot be swayed. I respect your moral stand, even if it is a dead end when it comes to the process of self-government because when either side can't budge, agreement is impossible. However, I'm always willing to have an argument with you in which there is the possibility that you might change your mind, even a little, because it's only when all sides are willing to accept less than perfection in service to the good, that agreement is possible. And agreement is the beating heart of democracy.

In a few weeks, the presidential primary season will be in full swing, with the Iowa caucuses taking place on February 1. I have been listening to candidates for these past many months in the hopes that they will speak about education. As much as it deserves to be, I'm not surprised that it hasn't been front and center for any candidate. To be as transparent as possible, I should let you know know that I'm a registered Democrat and, for reasons that have nothing to do with education, I intend to caucus for Bernie Sanders here in Washington state. I've not written here on the blog about him because he's not had a lot to say about public education other than to propose a plan to make state universities tuition-free to all who are admitted. So far, Hillary Clinton has had more to say on public education for both the better and worse, in my view.

I'm not in favor of privately run charter schools. If we are going to have a strong democracy and be competitive globally, we need the best educated people in the world. I believe in public education; I went to public schools my whole life, so I think rather than give tax breaks to billionaires, I think we invest in teachers and we invest in public education.

No, this is not a full-fledged education policy, but it does show he understands the corporate-style education "reform" movement for what it is: an attempt to take over public education by the private sector, as detailed in Diane Ravitch's book Reign of Error and Anthony Cody's book The Educator and the Oligarch among others.

Indeed, on his blog Living in Dialogue, Mr. Cody has written an convincing endorsement of Bernie Sanders from an educator's perspective, and calls on education advocates to join him. Beyond his comments on charter schools, Cody argues that Sanders' economic policies directly address income inequality and poverty, easily the most significant educational challenged faced in our nation. Sanders is also a well-known, life-long supporter of the union movement in general and teachers' unions specifically.

I've been listening to Bernie Sanders for more than a decade now and he has had me on his side since he announced he was going to run. If you're still on the fence, I urge you to click through to Cody's post.

And if you flat-out disagree with some or all of what I've written here, I invite you to tell me so in the spirit of family and friends. I'd prefer that you do that on the Facebook page, mainly because the comment aspect here on the blog is generally too cumbersome for dialog. Of course, if you just want to join the choir, I'd like that too!

Thank you for self-governing with me! It's only through our ability to agree as individuals that our nation's morality can emerge.

I put a lot of time and effort into this blog. If you'd like to support me please consider a small contribution to the cause. Thank you!
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1 comment:

Rebecca deCoca said...

I agree with everything you and Anthony Cody say, and have gone through a similar thought process.

I'm also grateful to Anthony for his transcript, in his previous post to the one you link, of Bernie's remarks at the Oct. 15 gathering of members of the Massachussetts Teacher Association, where Bernie says:

"...we’ve got to fight against the privatization of public education, and I intend to do that."

"... we will find a Secretary of Education who is much more interested in the whole child than teaching to tests."

" order to be good teachers, in order to provide the quality care that your kids need, you need to stand up and fight, and be involved heavily in collective bargaining..."

To me, this is enough of a declaration to be sure that Bernie gets it and is on our side, the side of our students.

Thank you, Teacher Tom! I love your blog!

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Sunday, March 6, 2011

Kentucky education chief warns JCPS that staffing overhauls may be falling short

The Courier-Journal weighs in on how restaffing doesn't actually work:|topnews|text|Home

Only instead of noticing that the audit process is a ridiculous waste of money, apparently we are meant to go through more. Nevermind that the issues started before these children ever started school. Nevermind that the problems have been ingrained for generations. Nevermind that robbing struggling schools of good students and sending them to private public schools actually hurts the kids left behind. Nope. The problems can all be fixed at the high school level starting with teachers. And apparently, the teachers that need to be targeted the most are reading and math teachers, because that's the most important part of high school; learning the answers to the math and reading section of a test.

My interview is tomorrow. Wish me luck. I'm going to need it.

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