Movers and Shakers: The Kids are Alright

A few weeks ago we made an edition of the podcast about our partners, their attitudes to  our Parkinson’s and the role they played in helping us cope with it. A lot of people said they found it very moving. Well, on the same day that we recorded that episode, we did a double shift and in the evening the pub filled up with some fine young people - our kids had come to give us their views on living with Parky parents.

They were skilfully interrogated, family by family, by Gillian Lacey-Solymar. She  asks tough unsentimental questions - what have been the low points? do you worry about what happens in the longer term? - without trying to force them to emote. But once again, I think you will find this a moving edition, partly because of the sheer amount of love expressed by our offspring for their parents.

I found particularly touching the way Lucy, Jake and Theo Mardell talked about Mark’s voice and how it had been weakened by Parkinson’s. “Him losing his voice isn't something I expected. I think that came as a bit of a shock,” says Lucy. She remembers being annoyed by her dad’s loud booming voice from downstairs when she was trying to get to sleep. “Your booming voice is something I now miss and didn’t expect to miss,” she tells him.

They describe their dad’s slowness out on family walks and how they will take it in turns to hang back and be his walking buddy, while having quality one-on-one time with Mark.

Simon Mayhew-Archer, like his dad a successful TV comedy writer, describes how even a Parkinson’s diagnosis is seen as comic material in his family. “The thing is that nothing in our family is treated particularly seriously. So even the diagnosis was treated mostly as a joke really - we'd called him the shuffle monster for a long time.”

Simon says his dad’s jokes are a coping mechanism in a family he describes as “emotionally undeveloped.” He says Paul’s comic mask sometimes slips when he’s at home: “Optimism is is a wonderful thing. And it's a crucial part of who he is with the Parkinson's. But I think it's important to sometimes be allowed to just say it's shit, and it's unfair, it has given him plenty, but it's also taken away stuff.”

Simon, like his dad an only child, says they are really close:”I don't really feel like I'm losing a dad, I feel like I'm losing my best friend. And that's really, really difficult.”

Henry, Gregory and Charlie Mostyn are united in their admiration for their father’s positive approach to his Parkinson’s diagnosis. Gregory says of the judge:

“He's the most relentlessly optimistic and positive  person in the history of the world. So he's made it very easy to be around in regard to the diagnosis.” Charlie agrees:”We're all pretty inspired as children by his response to it.”

But Gregory says they got some insight into one of the more distressing symptoms of their dad’s Parkinson’s, his violent nightmares, on a skiing holiday: “We were in the room next to him. And he was sort of screaming out very loudly in the night, which as I hadn't slept in a room next to him for a long time was quite scary.”

There’s sadness too at the early curtailment of his brilliant legal career, coupled with understanding that he wants to seize the day and lead his best life while he can.

Gillian’s children have really been through the mill, with her diagnosis coming in her late 40s and being soon followed by some very unpleasant symptoms. When Tanya Georgie and Oscar learned the news they all converged on the family home. Tanya says: “I think it was a very special but very sad evening, that first evening when we all discussed the diagnosis, because we all went straight to the worst possible version of what everything can be.”

The Lacey-Solymars are clearly a very strong and close family, and they have been drawn even closer watching Gillian’s trials with what quickly became a very painful conditioon:

“I think we've always been very close as a family,” says Oscar, a medical student, to his mother. “And we've always taken decisions together, which is very lucky. But I think especially with Parkinson's, you talk to us constantly about it. For example, last night, you called me in the dead of night, I happened to be awake. But we we had a chat through some things that you were worried about at the time. And I think that may be Parkinson's mediated some things you get more stressed about - it's fantastic that you've spoken to us about it.”

One of the things Gillian has been open about is that she has the genetic form of Parkinson’s which means there is a chance she. could pass it on to her children. Georgie says she is not going to have a genetic test:

“I don't think even if I found out that I had it, I would live my life terribly differently. So I don't see the value in finding out whether I do or don't have it.” And what. she definitely has inherited is her mother’s philosophy: “I think just live life to the fullest.”

I have left Adam Cellan-Jones to last because I cannot think about what my wonderful son said without getting emotional. As you may have gathered when I interviewed my wife Diane for our partners episode, we are a close, but quite practical family and we don’t talk that much about our emotions.

So it was a bit of a shock to hear that he had Googled Parkinson’s when he heard about my diagnosis and was frightened by what he found: “I pretty quickly decided to close the laptop, close the tabs and focus on Dad. And we talked a bit about it. And I was kind of reassured by how much energy he had - he still seems to do a million things and it doesn't seem to have slowed him down.”

(This episode was recorded before my recent fall when I fractured my elbow which definitely has slowed me down.)

What Adam said took me back to 2005 when I was diagnosed with a potentially fatal ocular melanoma. I too had gone to Dr Google, been terrified by what I found, and closed the laptop. So what had Adam, then 14 , been told about that? “Nothing,” he said, he had only been aware that dad was having a minor operation on his eye. He and our younger child, aged just 6, had been shielded from the truth by Diane, who had handled all the stress of that time alone.

And Adam and I admit that we both cope with my Parkinson’s by not talking about it too much:

“I probably talk to mum about it more than I talk to you about it.”

I ask what they discuss and he says:

”We compare notes on how we think you're doing…….it's true., we haven't really sat down and had a long conversation about it.”

Gillian asks whether this is the family’s “stiff upper lip” attitude coming through. Adam says:

“I think the attitude is, he wouldn't want to spend ages going on about it, and would much rather talk about other stuff that he's doing, which is a constantly growing list.”

But afterwards Adam and I realise that this is the longest conversation we have had about Parkinson’s. As so many of you have told us, Movers and Shakers is teaching us that it is good to talk.