Movers and Shakers: Partners

This week’s episode of the podcast about living with Parkinson’s is devoted to our partners. For months many of you have been telling us you want us to address the subject of the unsung heroines and heroes who keep many a Parky sane and fight for a better deal for us. We wanted this episode to be shaped by our own partners but getting six very busy people in the pub at the same time proved very challenging.

In the event, Jo Mardell, Julie Mayhew-Archer, Judge Nicholas Mostyn’s wife Liz Clarke, and Gillian’s husband Mike Lacey-Solymar huddled round the microphones in the cramped space at the back of the pub where we record Movers and Shakers. My wife Diane Coyle was away at her job as a professor at Cambridge University but I had recorded an interview with her the day before. Sadly, we are missing Jeremy Paxman and his partner who are away - in a previous episode Jeremy said he could not imagine coping with Parkinson’s without her.

“There’s quite a lot of emotion around the table,” says Liz Clarke at one point and, although I am not an objective observer, I think you will find this episode very moving.

Sir Nicholas Mostyn and his wife Liz Clarke

Liz admits that when she thought in the morning about doing the podcast she realised that she and the judge don’t talk much about Parkinson’s and was overcome with emotion:

“I felt quite tearful. And I realised that what we do day to day is make the best of it, which is seems to me the only thing to do.”

And that was a common theme. We realised as we recorded this episode that for many of us this was the first time we had sat down and talked at length to each other about the condition which is playing an ever bigger part in our lives.

For Julie Mayhew-Archer, it was a chance to open up for the first time about her fears about Paul’s forthcoming DBS (Deep Brain Stimulation) operation.

Mark and jo Mardell on their wedding day

Jo Mardell talks about the frustrations of trying to hold a conversation with Mark as his voice gets weaker just as her hearing begins to fade. And she, like my wife Diane, has had to learn just how much Parkinson’s can slow someone down when they are out and about: “He's just very slow walking and you just have to be patient and kind of guide him through the crowd.”

Gillian and Mike Lacey-Solymar

Mike Lacey-Solymar is different from the other partners in that he is totally immersed in Parkinson’s. We see a lot of him because he is with Gillian all the time, handing her pills, or literally carrying her to safety when she suddenly freezes. While for much of the time she appears a lively, articulate and physically capable person, her Parkinson’s is dangerously unpredictable. “She is is extremely vulnerable to low dopamine. When she goes ‘off’, she is completely incapable of movement. She can't speak. It's very, very distressing. And it can happen several times a day. My role, from the moment we wake up, is to check if she took a drug because sometimes she forgets to do that.”

Gillian is all too aware of what Mike does for her, both in terms of basic care and their joint intellectual pursuit of deeper knowledge of the science behind Parkinson’s. But for others among us there are revelations. Nick Mostyn is quite taken aback by Liz’s description of how in the midst of horrific nightmares he attacks her, putting his hands around her neck.

“I still can't help feeling terribly guilty for the fear that I'm meting out to my wife. I know that I'm acting as an automaton and that I have no responsibility for this. But it has been a very disturbing experience - to hear her speak so candidly about it really brought it home to me.”

Rory Cellan-Jones and Diane Coyle

My interview with Diane is light-hearted but beneath the surface emotions run deep. We discuss my diagnosis and I discover that she was angrier than me about the rather cold, impersonal way it was delivered. We agree, however, that my earlier diagnosis with a malignant melanoma had been much more frightening and that, initially at least, we had taken Parkinson’s in our stride.

She admits that her approach to my condition is quite practical and robust - “I love you more than I can say, but I wouldn't make a very good emotional support dog, would I? It's more pull yourself together and get on with things.” I tell her that I really like this approach:”That’s good because I’m not going to change,” she says.

What we did not know when we recorded this episode a few weeks ago was that we were about to face a much bigger challenge when I fell over and fractured my elbow.

For the last fortnight Diane has had to prepare every meal, help me wash and dress, and aid me in my battles to get treatment from the NHS, all while continuing to hold down a very busy and demanding job. She has done this with her usual good humour and common sense.

Like me, the other Movers and Shakers appear to be blessed with partners who, with very different approaches, make living with Parkinson’s a lot more bearable. It makes us look at those “Parkys” who somehow manage on their own with all the more respect.