Episode 6 – The Other Side of the Diagnosis: Jeremy Vine and Sonya John on Family Life with Parkinson’s

Parkinson’s doesn’t just happen to one person. It happens to a whole family.

In this episode, Maria and Vicky are joined by broadcaster Jeremy Vine and his sister Sonya John for one of the most honest and moving conversations in the series so far. Sonya’s husband Chris was diagnosed with Parkinson’s at 34, just two months after their wedding. More than 18 years later, she knows this world inside out, and she speaks about it with a warmth, humour and practicality that is impossible not to be moved by. Jeremy, who also lost his father to Parkinson’s, brings his own perspective as a sibling watching from the outside, and admits with characteristic honesty that there are times when the pain of watching Sonya and Chris simply becomes too much to talk about.

They cover everything from the early shock of diagnosis and the slow, relentless progression of the condition, to the life-changing impact of the Duodopa pump, the challenge of staying connected in a relationship when speech becomes increasingly difficult, and the very real frustration of watching someone you love sit on the sofa when you know movement is medicine. But Sonya also brings a remarkable toolkit of practical advice for partners, parents and family members: from PIP and ESA (always describe your worst day), to disabled parking, the National Carers Card, registering children as young carers, the free gym membership available through Everyone Active, and the importance of finding a haven of your own. Sonya’s is a loft studio she paints in with the trap door closed. Whatever yours is: find it, protect it, and don’t give it up.

And running through it all is Jeremy’s quietly held conviction that one day he’ll turn on the news and hear that they’ve done it. This episode is for everyone still waiting for that day.

About Our Guests

Jeremy Vine is one of Britain’s best-known broadcasters. He presents his weekday lunchtime programme on BBC Radio 2, one of the UK’s most listened-to radio slots, as well as Jeremy Vine on Channel 5, a weekday current affairs show, and the popular quiz show Eggheads. He has worked across flagship BBC programmes including Newsnight and Panorama, and has spent over three decades in journalism and broadcasting.

Sonya John is an artist based in Surrey. She trained at Cheltenham Art College and holds a BA Hons in Fine Art Painting. In 2023, she was shortlisted and placed runner-up in Surrey Artist of the Year. She has two teenage children and has been married to her husband Chris for over 20 years. Chris was diagnosed with Parkinson’s just two months after their wedding, and Sonya has navigated the full weight of that journey ever since: as a wife, a mother, and an honest, warm and deeply practical voice for everyone who loves someone with Parkinson’s.

Jeremy and his sister Sonya share the experience of Parkinson’s touching their family twice: their father, who lived with Parkinson’s in his later years, and Sonya’s husband Chris, who was diagnosed at 34.

Useful Links & Resources

Sonya John, Artist — Sonya’s art website
Parkinson’s UK — Support and information for everyone affected by Parkinson’s
Everyone Active — Free gym membership available to people with Parkinson’s and their families through the Parkinson’s UK partnership
PIP (Personal Independence Payment) — Financial support for people with long-term conditions; Sonya’s advice: always describe your worst day when applying
National Carers Card — Discounts and benefits for unpaid carers
Speech Assistant App — App used by Chris to type and convert text to speech; available on Google Play and iOS
Young Carers Support — Information and support for children and young people caring for a family member
Jeremy Vine on Channel 5
Jeremy Vine on BBC Radio 2

Timecodes

0:39 — Maria and Vicky catch up: twinning in white on a beautiful summer’s day; Maria’s three-week family break
1:30 — Vicky: a GP at a party who was shocked she had Parkinson’s; “But you don’t shake” — why GP education still matters
2:10 — Maria: “Oh, you’re too young” — the same old misconceptions; GPs as gatekeepers to diagnosis
2:30 — Introducing Jeremy Vine and his sister Sonya John
3:14 — Maria: an honest conversation about the impact of Parkinson’s on those who love someone with the condition
3:43 — Jeremy and Sonya are welcomed; Sonya: Chris was diagnosed at 34, a few months after they got married
4:35 — Maria: not just Chris — Jeremy and Sonya’s father also had Parkinson’s
4:44 — Jeremy: the double whammy of husband and father; the mild case that was never mild
6:18 — Vicky: when your father was diagnosed, how did your mother cope?
6:50 — Maria: did you recognise Parkinson’s in your dad when he was diagnosed?
7:04 — Sonya: not until he told me; the Parkinson’s shuffle
7:18 — Vicky: how did Chris’s condition first present itself?
7:33 — Sonya: his little finger, moving it through treacle; tests before the wedding
8:12 — Vicky: it’s OK to get emotional; her own grandmother and mother had Parkinson’s too
8:22 — Sonya: the beautiful table laid out for their future, then someone swept it all off; “these are the good days”; “be a moving target”
9:36 — Maria: the importance of exercise from the very beginning; 18 years of keeping moving
10:32 — Vicky: who was there for you, Sonya?
10:41 — Sonya: it took a while to find a Parkinson’s nurse; no specific support groups; met a man who had been diagnosed at 18
11:11 — Vicky: planning for the future when your marriage starts with a Parkinson’s diagnosis
11:28 — Sonya: medication made Chris foggy-headed; noticing the change when he forgot his pills
12:01 — Jeremy: seeing Chris sharper without his medication
12:07 — Sonya: now he cannot speak — that’s the worst thing
12:24 — Jeremy: 20 years is a long, long haul; comparing the trajectories of Chris and their father
14:42 — Sonya: Chris doesn’t have a tremor; he freezes
14:51 — Vicky: Parkinson’s is not just a tremor; “like being stuck in treacle”
15:28 — Jeremy: dopamine centres are 80% down before the first symptom appears
15:50 — Sonya: when their father retired in 2004 and slowed down
15:58 — Jeremy: he was still very fit; never drank; the unfairness of it
16:12 — Maria: the non-motor symptoms of Parkinson’s; apathy, depression and the role of dopamine
18:15 — Vicky: how do you find it, Sonya, managing the apathy around exercise?
18:16 — Sonya: I get frustrated when Chris just sits on the sofa watching TV
18:29 — Vicky: I’m like a tortoise until my medication kicks in; then I’m the Duracell bunny
19:48 — Sonya: in fifth gear with the children and everything; it’s maddening
20:01 — Jeremy: Sonya is the queen, the heroine; he and Tim see her as a goddess
20:39 — Sonya: from the inside it looks very different; she has a go at herself all the time
20:51 — Vicky: is there support out there for you?
21:00 — Sonya: crowbar the things you love into your week; build a support network; try talking therapy
21:34 — Jeremy: Sonya’s painting; “don’t stop painting, son”
22:12 — Sonya: the loft studio; close the trap door; every family member needs a haven
22:33 — Maria: you married Chris as your husband, not as someone to care for; the word “carer”
23:14 — Jeremy: Anne Widdecombe on “you’re not a carer, you’re his wife”
23:49 — Sonya: I have three dependents — four including the dog
24:33 — Vicky: what can the world do to help people in your situation?
24:50 — Sonya: Action for Carers; National Carers Card; free gym membership for people with Parkinson’s and their families
25:25 — Maria: Everyone Active; the national partnership with Parkinson’s UK
25:58 — Sonya: disabled parking permit; airport assistance; car tax exemption
26:34 — Vicky: PIP and ESA — financial support for families and people with Parkinson’s
26:50 — Sonya: on highest level PIP and ESA; always describe your worst day when applying
27:25 — Vicky: I look well now, but on my worst day I can’t put one foot in front of the other
27:52 — Maria: young onset means mortgage, young children, and workplace challenges; dual tasking difficulties
29:21 — Jeremy: the benefits debate; Chris is the most deserving case I can imagine
31:01 — Vicky: I love working; but this man deserves every penny of support he gets
31:40 — Maria: work-life balance; high-stress lifestyles and the Parkinson’s puzzle
32:26 — Jeremy: is it stress related or genetic? The motor neurone disease and footballers comparison
32:51 — Vicky: tests show hers isn’t genetic; stress and the stories of other young women
33:38 — Jeremy: if stress caused it, Sonya would have it
33:48 — Maria: multifactorial causes; inflammation, pesticides, gut first vs brain first
35:11 — Vicky: how is Chris now?
35:20 — Sonya: the Duodopa pump; so much smoother; off all pills except one
36:02 — Sonya: his biggest problem is he cannot speak; mumbles or nothing comes out
36:26 — Sonya: he can talk in his sleep; learning Sonnet 29 together line by line; neurologist suggested hypnosis
37:19 — Vicky: can he sing?
37:20 — Sonya: sometimes, a little; BSL; Speech Assistance app; navigating a relationship without speech; cinema, coffee, cards, Scrabble, table tennis; PAs who read to him
38:31 — Vicky: has DBS ever been considered?
38:39 — Sonya: it’s the pump or DBS; the pump has been brilliant
38:49 — Jeremy: always listening for the breakthrough; Huntington’s gene editing; the diabetes analogy
40:05 — Vicky: I think we are so close
40:52 — Jeremy: motor neurone disease, MS and Parkinson’s are the big three
40:58 — Maria: the remarkable advances in MS treatment
41:03 — Vicky: the fastest growing neurological condition; time to change the image
41:34 — Jeremy: it’s probably growing because we’re living longer; but young Parkinson’s has always existed
41:57 — Vicky: the life jacket analogy; put yours on first
42:30 — Jeremy: “please tell her this, she needs to hear it”
42:34 — Sonya: delegate the boring tasks; Chris’s mum has him for a week every two months
43:12 — Jeremy: Sonya’s ability to make friends without burdening people; the Morton’s neuroma mix-up; compliments only on podcasts
46:11 — Sonya: register children as young carers at school and with the doctor; D of E discounts
46:45 — Jeremy: the effect on the children; teenage years; the need for strong male role models
47:12 — Sonya: that’s you, Uncle Jeremy!
47:18 — Vicky: funny uncle!
47:26 — Vicky and Maria: thank you both; asking about Sonya’s art; sonyavine.com
48:22 — Jeremy: “What a great podcast!”
48:36 — Vicky: reflections — Sonya’s haven and the loft studio with the trap door closed
49:13 — Maria: you can’t care for someone if you don’t care for yourself; Parkinson’s meds haven’t changed since the 1960s — but exciting treatments are on the horizon
50:16 — See you next time!