A Parkinson's love story

Pen and Joss were teenage sweethearts. 50 years later, they were reunited – and it was down to a Parkinson’s UK local group. Having fallen in love all over again, the happy couple share their story.

My good friend and neighbour, Sally, is Chair of the Parkinson’s UK local group in Oxford,” explains Pen. “After I was widowed, she began inviting me along to meetings as a way of getting me out of the house. I became so involved I was eventually elected Group Secretary.”

Meanwhile, 9 years ago Joss was diagnosed with Parkinson’s. 4 years later, he was widowed. To help rebuild his life, he began looking for a Parkinson’s group to join. He googled the Oxford group and was astonished to see Pen listed as a contact.

We’re 69 and 72 now, but when we met, we were 16 and 19 and the age gap felt huge...I didn’t want it to end, but we never really had the chance to cement what we had.

Back in time

“Joss exploded into my life in 1968 and I never really got over it,” laughs Pen. “I was studying in France and Joss was hitchhiking back to England following a French tour with the Oxford University Dramatic Society. We were introduced by a mutual friend and spent 3 days together. As Joss was leaving he said, ‘When you arrive back in England, I’ll pick you up in my London taxi’ – and he did!”

Pen was at a strict boarding school in Wales, but the pair kept in close touch, and at one point, Joss even managed to smuggle a Valentine’s rose past the school’s matron! When Pen arrived in Oxford as an undergraduate, Joss had already graduated and was working in London. He visited often, but it became clear the pair were at different stages of their lives.

“Joss was my first love,” Pen says. “But I always felt he was beyond my reach. After lots of to-ing and fro-ing, I decided it was time to get over him and move on.”

“We’re 69 and 72 now, but when we met, we were 16 and 19 and the age gap felt huge,” concedes Joss. “I didn’t want it to end, but we never really had the chance to cement what we had.”

Reunited

“When I saw Pen’s name on the website, I was 99% sure it was her,” says Joss. “But I didn’t do anything about it for several months, because I was still raw from the death of my wife. I had no idea what Pen’s story was –whether she was married, whether she had Parkinson’s – but I was keen to find out, so eventually I sent her an email.”

“I remember it so clearly,” laughs Pen. “The dog had woken me up at 2am and it was habit to glance at my emails. When I saw Joss’s name in my inbox, I almost fainted, I couldn’t believe it!”

The pair spoke on the phone the next day and 3 days later, met in Oxford for the first time in almost 50 years. Things developed quickly and they soon introduced each other to their children and wider family, none of whom were aware of their history.

“It could have appeared insensitive, but genuinely, people couldn’t have been more lovely about the news,” says Pen. Joss adds: “Pen’s children could have very easily turned round and said, ‘Mum, why are you getting connected with this elderly guy with Parkinson’s?’ But they and their respective spouses have welcomed me with open arms, which is full credit to them, and to Pen!”

We have a saying in our group, ‘See through the Parkinson’s to the person’ and that’s what I did. Joss is still the same person I knew all those years ago.

Reconciliation

The couple moved in together just before the first national lockdown and then in the summer, Joss proposed. They were married 3 days before Christmas and because of coronavirus restrictions, were allowed just 2 guests. Sally, who had first invited Pen along to the local group, and her husband, Jonathan, acted as their witnesses. Pen laughs: “So it is a very Parkinson’s story!”

Living with the condition though, is a challenge that both Pen and Joss have had to face up to. “I’m lucky that my symptoms are mild and have progressed slowly since my diagnosis – but that’s not necessarily going to continue,” admits Joss. “I was very conscious that Pen’s husband had lived with a heart condition for 10 years before he died. She watched him decline and I was worried about putting her through it again.”

But Pen took a different view. “We have a saying in our group, ‘See through the Parkinson’s to the person’ and that’s what I did. Joss is still the same person I knew all those years ago. Of course, I know things might change,
but I certainly don’t think about Parkinson’s everyday. We just get on with our lives.”

Read more about forming new relationships when you have Parkinson's.