Punching Through Parkinson’s: The Write UP

A little write up of the challenge. There’s so much more I could write, but I’d never finish. 

The idea

It started with the Parkinson’s boxing group at Maxine and Christian’s old gym that Christian used to run. I really liked the people and way it made me feel, and i carried on joining the Zoom classes that started at the beginning of COVIID19 lockdown. It was only at this point that I met Maxine, and I really appreciated the way the two of them had fun and motivated us together on screen. These Zoom boxing sessions kept us going during those first months.

I was looking for another physical challenge to keep fit and to raise awareness of Parkinson’s Disease, and mentioned the idea of a 12-hour boxing event to Christian and Maxine, and they were immediately up for it. The next person to tell was Caroline and of course she said she’d do it with me – what a reliable and supportive friend!

The training

I started individual PT sessions with Maxine via Zoom and it’s hard now to believe I hardly knew her then. The classes intensified and others such as Liz, Karen and Caroline joined me on zoom.

Ultimately Caroline and I had to get some serious joint training in with Maxine, so we booked in a regular slot of sweat and exhaustion on Tuesday evenings. I was also doing strength and boxing training on Monday evenings, Wednesday, Thursday and Saturday mornings, 

When I first started this journey I was a puny 8st 9lb wimp with no upper body strength. My identity was being consumed  by the fact I’d been diagnosed with Parkinson’s in 2018 and my body confidence was pretty low.

As I continued training I started to develop muscles I’d never had before and a level of fitness more like how I felt when I was in my 20’s, not of someone coming up to my 50th birthday.

I was also getting to know Maxine, and once COVID19 restrictions allowed we’d meet for a PT session at the newly opened gym, which coincidently was the old church where I was christened and went to church parade as a Brownie. 

The period of time during the pandemic was tough, with depression, ill health, and some very unpleasant stuff happening to friends and family. My training helped me through some pretty dark moments. As well as working me really hard, Maxine and I could have a good laugh and sometimes a good moan too. I shared some of my worst fears about my condition and Maxine listened and cared – this is something I will never forget.

The idea for the day developed and good friend Chris came up with a brilliant idea that 10 minute sessions could be bought off by others to relieve us of some of the 12 hours of boxing and to raise money for PDUK.

Due to the pandemic we rearranged the event three times, and right up to the final days of training we had extra setbacks. Caroline’s coach who was based in Yorkshire pulled out with two weeks to go to the challenge, so the schedule we’d been working to for the day was a third light on people to take pads. COVID 19 had affected Maxine, Genie and others within the team. We were all managing niggles and reoccurring injuries, and then in the last week Christian broke his foot!

We got through these setbacks, low moods and feelings of self doubt thanks to so many well wishes from friends. Donations were rolling in, and once again Beeston AC running friends (who I now count as friends in their right regardless of running) were amazingly supportive. Karen unexpectedly dropped by to see me on the Thursday night and handed me a robe. It turned out to be a boxing robe with “Punching Through Parkinson’s” embroidered  on the back – this was absolutely superb!

Mark @ BBC Radio Nottingham and others had helped promote the event in the run up – this was really important and appreciated.

Caroline and I had had our spray tans, we’d sorted out our clothes for the day and we were as fit as we were going to be.

I remember feeling nervous and excited the night before. We were ready!

The big day:

The day arrived and it was forecast to be the hottest day of the year.

Simon had agreed to just drop us off and pick us up, however unsurprisingly once he’d seen the gym and what we’d managed to organise he wanted to stay. He came back later and had two goes in the ring.

Jane was the first guest to enter the ring. Steve then joined via Zoom from Thailand. 

Emotions ran high when Parky friends joined in person, Ray and Sophie, Trevor, Ann, Liz and Les, Jackie and Richard. 

Others such as Suzanne in Austria, Trevor’s family in the US, members of Friday Club, Julie form Scotland, and Naomi and her one week old daughter Florence joined by Zoom. There were some very funny moments running the Zoom training, not least when I was taking Trevor and Janice on my own, and only after I’d been running the class for 5mins did I realise the professional Christian was sat in the corner eating some food watching. 

The day progressed and other wonderful supporters (too many to mention) joined in. These included The Coopers, The William’s, Liz, Ali, The Walsh’s, Simon, Claire and Jess, My family, and all the wonderful members of the gym.

Worth a special mention were the fellow coaches and members of the gym who stepped up to support us. They took us on pads, encouraged us, helped out on zoom sessions, fed us, and made the day better than any of us could have imagined. They approached the task with enthusiasm and warmth and never made Caroline feel like the amateur, mature women that we are. I will never forget the Resurrection MMAA team, and how they got us through it supporting Christian and Maxine by making us laugh, work hard and feel great.

It was never in doubt that’s we’d be able to do the 12 hours, after all we’d trained very hard for it and we had the superb team, and supporters with us. 

We boxed till the end and had a great final with all four of us in the ring till the 12hours was up. We all hugged and went into a group hug. I know I felt such love for the other three core team members, for what we had done, and how we had done it.

We drank some fizz, reflected on the day and then after about 45mins we went out into the darkness and drove home.

Reflections afterwards:

  • We used this phrase a lot during the day and it seems so apt: “She said she could so she did”.
  • The pride I feel for what the four of us achieved is immense – I wouldn’t have changed a single thing about the day.
  • There are a lot of very fine people in the world – I seem to know more than my fair share and for that I’m very grateful.
  • People are very generous and I can’t thank them enough – all money raised is going to research for better treatments and ultimately a cure for Parkinson’s.
  • Both Caroline and I want to keep on boxing.

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

Awareness and Art……..

Paul 55mins
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.