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Dancing, Digging Deep and Donations: the 24 hour non-stop danceathon

 

On Saturday 26th October 2019 my Sister and I embarked on a 24 hour non-stop danceathon to raise awareness and money for Parkinson’s UK.
Here’s my abridged account of the crazy but life-affirming experience:

First of all it’s worth explaining that we danced for 25 hours, not 24 due to it being the weekend that the clocks go back (I didn’t realise this when I set the date).
We arrived to set up at 8am and battled through the torrential rain and deepening puddles surrounding the community centre.
James the DJ kicked things off at 10am with “Lets Groove Tonight” by Earth Wind and Fire. My lasting memory of the start was my dear friend Liz crashing through the door as the clock struck 10am in running and hi-viz cycling gear after completing our local Parkrun and peddling like mad to be there at the start.

All started well but by 11am I was getting a bit overwhelmed by everything. I hadn’t been well during the week and had little sleep. I suddenly went very cold, light headed and felt generally worn out. I developed a severe shake and genuinely wasn’t sure I could go on. The thought of having to quit so early on made my symptoms worse. It took a couple of lovely friends Yvonne and Perky Parky mate Chris to sit with me in the back room and get me calm (whilst my Sister Kathryn was dancing). Chris who understands the condition just held me and reassured me until I was warm and ready to tackle the next 23 hours. I don’t think I could have carried on without this love and understanding.

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Chris and me after hugs and words of support.

Anyway it worked and the next few hours flew by, and before I knew it Jeanie Barton (with Bob Hudson on keys) were setting up to do the jazz thing – this was wonderful. It was particularly poignant as Bob has also been recently diagnosed with Parkinson’s.
Then my brother in law Jon arrived with a surprise package of our 83-year-old Dad Pete. I was completely taken a back seeing Dad, but once I’d gathered my composure I introduced him to friends who chatted and danced with him.

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Amanda dancing with Dad

Dave, Jon and Oliver did an amazing job looking after the kitchen providing tea, coffee and sausage cobs to daytime guests.
We had a candy floss machine for the little ones, and Bea kindly painted our faces with glittery designs.

After Jeanie and Bob finished their two sets things went a little quieter and it felt like a shift change over. Other guests arriving including: the wonderfully supportive Beeston AC, dog walking friends, many from our Friday Club, the two Katie’s from Parkinson’s UK, Sheila North and family, and other Parkinson’s sufferers like Trevor, Steve and Joe (and partners).
At about 8pm more food was delivered by the Tony and Sandi (we’d had a delivery earlier in the afternoon), and Dad was safely in his taxi journeying home.
Beeston Breakers kicked off the late evening by putting on a great breakdancing demo, and tried to teach us some breaking moves (without much success). The evening party really kicked off, feeling like a damn good wedding disco with all generations thrown together in celebration.  Flashing disco shoes lit up the floor, Abba costumes were worn and there were some amazing cakes being eaten. Drink and food were flowing when Brother in law Dave surprised us all with a disturbingly good impersonation of Freddie Mercury’s “I Want To Break Free”.

Sue and her friends joined their party with ours via FaceTime, and we danced and danced and danced.
Gradually as the night got late, people started to leave and the party thinned out. This would have been much harder to take if it hadn’t been for me knowing that Kathryn would be there throughout, and Caroline and Janice had committed to sticking with us till the end. This support is something I will never forget and has forged a special bond between us.

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Caroline, Kathryn, me and Janice

 

 

 

While the boys had cat naps, Wendy, Freda, Peggy with Greg and Teresa danced on with us to Northern Soul and then 90’s Indie till 4am! Naomi gave us her support between naps, and Greg was guessing whether the music was Shed Seven, Seahorses or one other of Caroline and my favourite 90’s bands from our “Irish” days. At 4pm Freda and Peggy left – this was an incredible effort by two of our Friday Club members, one who is about to turn 70, the other a few years older.


The next couple of hours were the hardest as it was just the four of us trying to keep going, celebrating the passing of every half hour, drinking water and keeping warm.

In expectation for the sun to come up and new people joining us soon our dancing moods lifted. Thank you Chris and Laura for bursting through the doors and bringing us new energy and the belief that we could make it – you’ll never know how much we needed to see you.
Others started to arrive, James the DJ sprung back into life, the sun beamed through the windows and we gradually got to the two hour countdown.

The room began to fill and the last song was Elton John’s “I’m still standing” and we danced like we’d only just started. It was so much fun and very emotional dancing with friends and family around.

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I’ve learn’t a lot this weekend, not least about my strengths and vulnerabilities. I really didn’t know if we could do it or not – it’s not something you can train for or read up on, but that’s the point to do something that challenges you.  I’d also be lying if I didn’t admit there were a few times in the 25 hours when I thought “How did we get here?” and “why me”? particularly in the wee hours, but the positive power of friends and family brought me round.  I’ve learn’t a lot about other people – one of the wonderful things about opening up and sharing is that other people then do it back to you – it’s healthy, heart warming and has brought me so much closer to some people I’ve known for years without perhaps knowing them much at all until now.  That has a huge value – thank you danceathon!

A massive thanks has got to go to my partners in crime James and Kathryn – we made an awesome team before and during the event.
I also must give massive thanks to my long suffering husband Simon (and Clacko who supported throughout) and my wider supporting family and friends for making this happen – all those that baked, donated, encouraged, ‘shared’ and danced! If I haven’t mentioned you, it’s not because I don’t appreciate you’re effort making this event what it was.

We’ve raised over £1,440 over the 25 hours – over £2,700 in total and still going up.
That’s more than £64 per hour and over £1.00 per minute that will go direct to researching a cure for Parkinsons, something we desperately need.  We’ve also talked a lot about Parkinsons, connected people, and hopefully made people more aware of the condition in a positive way.
You are all awesome! xx

You can still give at: https://www.justgiving.com/fundraising/janetandkathryndanceathon

Life Drawing Wednesdays – more than just an art class.

Fleur021019Wednesday evenings have gradually become the highlight of the week for me.

At 7pm the regulars arrive for our two hour life drawing session in a reassuringly predictable order. We talk briefly about the week that has passed, glossing over the real sadness and anxieties some of us are dealing with. Instead we muse over where we fancy sitting this week, what approach we might take to our drawing, and what flavour cake we have for the half time break.

Once started we lose all sense of time and what’s going on beyond the walls of our lovely old venue. We’re only interrupted by the occasional sound of geese flying by, and have the constant sound of the water raging over the nearby weir. We lose ourselves in the process of drawing and the challenge of capturing the naked form.

The alarm goes off to mark the end of the session and we supportingly review each others work and reflect of the breadth of styles and talent. The respect and support we have for each other has created something of real value. Established attendees have become good friends, new comers are warmly welcomed.

We leave the building and enter the cold dark air, saying goodbye to our life drawing haven for another week, most of us feeling a great deal better than when we arrived.

The life drawing sessions run every Wednesday, 7,30-9.30pm at the Canal Heritage Centre, Beeston, Nottingham. https://canalsideheritagecentre.org.uk/whats-on/events/09/10/2019/groups/life-drawing-group

Hopes and Fears

So this week there’s some positive news about a possible new treatment for Parkinson’s disease: https://www.bbc.co.uk/news/health-49713407. It sounds promising and my immediate reaction was excitement, relief and above all a huge wave of hope. Simon and I talk about how amazing it would be if the drugs worked. We read excitedly about the trials and try to find out when they might be complete and better treatment available.

Then I suddenly feel really bad for having these emotions. I shut down the conversation and get upset – isn’t this just further evidence to suggest I’m in denial about my diagnosis and not coming to terms with living with PD? Isn’t this just me grabbing at false hope and unrealistic dreams?

Confused and emotional I went into the studio and tried to express this situation of being between unrelenting hope, and then the constant fears for the future. Trying to look positively forward, whilst carrying a dark and debilitating weight of worries.

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“Hopes and Fears” Acrylic on Canvas.

Living With Mr P: Our First Anniversary

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I’m still me! A simple statement. One I wasn’t so sure I’d be able to say on 6th September 2018 when I got the formal diagnosis.
Mr P has brought me new anxiety and physical challenges, but I’m still the me I was before 6th September, same fears, same vanity, same ambition, same desires.

My drawing and painting has changed over the last 12 months. I can’t produce the fine detail of the past, but this has given me a bolder approach to my painting. To compensate for the lack of small detailed hand and wrist movement, I now stand at my easil and paint using the full movement of my body. As a result my artwork is richer in colour and emotion and feels more authentic.
Mr P has made me more creative and daring, and my output positively effects my ability to cope with Mr P.
Art is my therapy!

Mr P has opened me up to new experiences and challenges. In the last 12 months I’ve done:

  • The London 2 Paris bike ride (and the training to do it).
  • Joined a running club.
  • Got involved in Breakdancing and the urban arts scene.
  • Started doing yoga.
  • Had a tattoo!

Thanks to Mr P I have made some amazing new friends. I hope, friends for life.
I now have less time for negative people, and I recognise and love fiercely the positive friends and family I have.
I’ve learnt that the simplest gestures and thoughtful words can sometimes change your world.

Mr P may not define me, but I accept he is now part of who I am.
I am going to make something positive out of this situation. To talk about Parkinson’s and raise awareness of it through positive actions.
I’m determined to try to ensure life doesn’t close in on me, there are too many new experiences, challenges and paintings to be created.

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Awareness and Art……..

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Paul, 55mins

It was a strange day yesterday: the eve of World Parkinson’s day, and my six month PD review appointment at the wonderful QMC Nottingham. The waiting room provides a harsh reminder of the stages and effects of this condition. If anything makes you aware of the importance of funding more research for new treatments and to find a cure, it’s sitting in this waiting area as a relatively newly diagnosed patient.

My appointment was over an hour late, but who cares? These Parkinson’s professionals are amazing and I can’t thank them enough for dedication, support and efforts to help make the situation as bearable as possible.

As for me, I stay on my 10mg of Ropinirole, keep up the running and cycling and keep my fingers crossed for a longer ‘honeymoon’ period. As part of PD Awareness Week and World PD day, I decided to ‘come-out’ at my regular Wednesday evening life-drawing group, and it felt good!  For me a problem shared is a problem halved, and by speaking about my own condition it feels like I’m doing my own little bit for PD awareness. As for my art, I thoroughly enjoyed creating bold, bright, positive drawings last night, which I’m sure reflected my mood after sharing my diagnosis with creative and supportive friends.