“I was diagnosed with Parkinson’s when I was 46. I was an entertainer by trade – a compere, fire eater, magician, you name it, I’ve done it! And I also supplemented that with driving taxis and buses.”
“I’d been to the doctor, they had diagnosed me with a dystonic tremor, and I thought all right, fair enough. Then in around 2014 I was doing Jesus Christ Superstar in Cannock and the choreographer said ‘John stand still’ and I didn’t even know I was doing it. I had a shaky right leg and right arm. So I went back to the doctor and I said I want a second opinion. So, I saw a neurologist. He did a few tests and I had a nuclear brain scan, then they called me in for the results.”
“I will never forget the day I was diagnosed with Parkinson’s. It was the 20th May 2015, at half past three. It was the most crushing blow you could ever imagine.”
“I was immediately told I couldn’t drive, and at the time I was living up in the West Midlands, with no friends or family around me. So within a month I moved back down to Waltham Abbey.”
Coming to St Clare for the first time
“It was in around 2015 or 2016, that I spoke to my consultant and GP and I was very down, very lonely, and very scared. They suggested that I come to St Clare Hospice, for what is now called, the Living Well programme.”
“I just remember hearing the word ‘Hospice’ and thinking ‘God’s waiting room.’ It was daunting to think I needed a Hospice.”
“I thought on the first day I came to St Clare, “This isn’t going to be good. You come along to a hospice to die”. I walked into the room and it was full of old men and I thought “Here we go, God’s waiting room”, at which point people there took the mickey, pulled my leg and we just bonded. We got on like a house on fire. They were decent blokes and I made great friends straight away. You don’t see them as being ill, you see them as being friends.”
“Coming to the Living Well course gave me a sense of purpose, and a social network. We shared stuff, we talked, we discussed problems, we discussed Will making, we discussed death, mobility, benefits.”
“We discussed everything there was to discuss, and what was said in the room, stayed in the room. Coming here has brought me out of myself again because I can be very shy.”
“I developed some really good friendships over the years. But as a hospice is, people have died, and 6 or 7 years later there are only a few of us originals left. Thankfully they have gone on to better places, and are in no pain. That’s the only thing about a hospice – you make good friends but you lose friends. But you’re grateful for the time you spent with them, especially in a place like St Clare.”
Practical support
“The support I have also had from the staff has been amazing. The social workers, physiotherapists and occupational therapists, have given me a lot of practical support.”
“When I first came to St Clare I was living in a flat with 29 steps to get to the front door – and that just wasn’t practical for me as the Parkinson’s progressed.”
“Michele, the social worker, helped me to apply for benefits and to the Council to get a bungalow. Then an occupational therapist and physiotherapist came round and looked at the bungalow and got me sorted with a bed, chair, toilet assistance and wet room. Then they looked at the back of the house and made the whole garden into a patio that is wheelchair accessible, in case I need a wheelchair in the future as the Parkinson’s progresses. I’m just so grateful to the staff for all the practical support.”
Men’s Shed
“Once I had completed the Living Well programme, I began attending Café Clare, which is a drop-in café event for anyone to attend at the Hospice on a Friday. We were discussing the fact that we wanted another group for men to attend, and my friend Hugh came up with the idea of the Men’s Shed. Sadly Hugh died in 2019, and so I went on to help the staff at St Clare to progress and found the Men’s Shed* in 2020. I hope Hugh is looking down and smiling at us, and that he’s pleased we got it off the ground.”
“The Men’s Shed is a place for men to come where they can forget about everything else – their troubles, their diagnosis – and just have fun.”
“It is a real brotherhood, where you can forget all the rigours of daily life, chat, do some woodwork. There is always a friendly smile, and a lot of sawdust!”
“The Men’s Shed shows you that there is more to life when you are given the diagnosis of a life-limiting or terminal illness. You can forget about all that whilst your there, and enjoy yourself.”
“I find the Shed a real release, where I can forget about my Parkinson’s and put my efforts into woodworking, or just chatting and making friends.”
“We have our ups, we have our downs, we have our bad days, but 9 times out of 10 those bad days are made better by us men getting together.”
“If I hadn’t had St Clare around for the last 6 or 7 years I’d be at home rocking backwards and forwards on heavy medication. St Clare’s has been a God’s send. It just brightens your soul, every time you come. You walk in and you get a positive experience.”
-John
John’s hair-raising fundraising challenge!
In August 2022 John took on a fundraising challenge for St Clare Hospice by dying his beard bright red for the month of August and collecting sponsorship. He raised over £500 for the Hospice!