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.

Artful Parkies On Tour

Chris Stanley and I are delighted to be planning a little painting tour of Yorkshire in September of this year.

Thank you to Disability Arts Online for supporting us on this journey of self development. We aim to explore awareness and attitudes about Parkinson’s and incorporate them into our art and a little journal of our week.

The week will consist of us setting off in my camper van “Foxy” and pitching up in three different locations.

More details of the project will be coming soon………..

“Oh no, she’s on again”

Most people I know have a personal battle to fight, whether it’s an injustice, ill health, or a change to their life that they neither wanted or expected. If you don’t, consider yourself very lucky.

People carry their burden in different ways. This doesn’t make them better, worse or more or less heroic than another person. We’re all individuals who bring their different personalities and physical and mental capabilities to the situation.

I feel the effects of Parkinson’s every day, but at the moment I feel strong enough to be loud and speak out about PD. I want to change opinions, educate and fight for better cures and treatments for those with and without a voice. I’m fully aware that my strength has a time limit, but I can only do what I can, whilst I still can.

So when you sigh and say, “she’s on the radio again!” or wonder why I bother to keep doing challenges etc. It’s because I have a voice and it’s a waste not to use it whilst I still can.

Listen to me (if you can bear it!) on BBC Radio 2, Zoe Ball’s Breakfast Show at 9am Thursday 1st July.

Fighting Fit…………

During my boxing / fitness training with the marvellous Maxine (and George the bull dog) yesterday we were reflecting on what it is to be healthy.

Boxing training has given me strength I never knew I had. Not just the visible muscles I’ve developed, but the less visible body confidence and stamina that seems to fly in the face of the Parkinson’s diagnosis I received in 2018. For the moment the weekly program of exercise is working well for me, I feel strong and in control of my health.

I’m not saying its easy, it’s a constant balance of medication, exercise and rest, and that’s just the physical side of things. Then there’s the management of mental health – finding tricks and strategies to stay positive, motivated and moving forward. Family, dogs and surrounding myself with positive friends plays a big part for me in keeping me going.

But this constant management and adjustment to stay as well as we can is what is needed throughout our lives. Whatever challenges we face, we have a choice how we deal with it. Whether to give in, or adapt and find our best way of dealing with it.

It’s now well known that exercise at a certain level can help towards slowing down the progression of the condition. In order to embrace and promote this fact, I’m taking on a 12 hour boxing challenge on July 17th 2021 called “Punching Through Parkinson’s”. It’s a challenge for those with or without PD, to raise awareness of what we can do rather than what we can’t.

Prof. Bastiaan R. Bloem, MD, PhD, FRCPE, Director, Radboudumc Center of Expertise for Parkinson & Movement Disorders gave me these wonderful words of support:

This is a brief message to express my deep sympathy and great support for the wonderful effort by Janet Barnes, who is currently training for a 12 hour boxing challenge. Boxing is a great exercise and workout for people with Parkinson’s disease, and I cannot emphasise enough how important regular exercises for everyone who lives with this disease, both as a symptomatic treatment, and perhaps even also as a way to slow down the course of Parkinson’s disease. Janet is raising awareness for the importance of exercise, is motivating other people to engage in boxing or other types of physical activity, and is also raising money for Parkinson’s UK who really are the champions of people living with Parkinson’s in the UK and beyond. I wholeheartedly support her efforts, and I encourage you to support Janet and Parkinson’s UK in the fight against Parkinson’s disease”.

I’m asking you to join the fight and get involved, making the day something to remember. Join in person on the day, join by zoom, make a donation, share the message, do anything you can to make this big.

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.

Hopes and fears
“Hopes and Fears” Acrylic on Canvas.