'I can't talk, walk or eat by 7pm - people are shocked when they hear my diagnosis'

Kate and Phil Hockey say they have "grieved for the life we don't have" after his diagnosis with early onset . For the couple who have been married for 26 years, the goalposts are constantly changing. "The doesn't stand still," says Kate. "It's progressive, so you're constantly having to recalibrate.

"When Phil was diagnosed, we had two teenage daughters we needed to tell. We sat down with them and went through booklets from with them. The first question our youngest asked was: 'Are you going to die?' and the second was: 'Am I going to get it?'

"It was a really difficult time for all of us and we've been as honest as we can with them. They're now in their 20s and they're brilliant. Because they both live away, when they come home sometimes they can't understand what Phil's saying but after a couple of days they tune back in."

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Phil, 53, was a busy deputy head living in London when his first began to suffer, and initially, he put his symptoms down to stress. "I had quite a lot of pain in my arm and shoulder as well as poor movement," says the former teacher. "I couldn't do up my shirt buttons anymore. I was suffering from very poor sleep too."

Phil and his wife Kate, who also worked in education, were so concerned by his decline they made plans to uproot their lives. "Phil was so poorly and fed up at work we decided to up sticks," she says. "We sold everything and bought a campsite in Cornwall."

But before the couple could complete the move, Phil was diagnosed with Parkinson's, the progressive neurodegenerative disorder primarily affecting movement. The condition more commonly affects people over the age of 60, but for Phil, it was 45.

"It was a complete shock," he says of his consultant breaking the news in 2016. "I always thought Parkinson's was a disease when you get old."

"Phil doesn't have a tremor at all so his symptoms are very different to what people automatically perceive as Parkinson's," adds Kate, 51. "There are 36 non-motor symptoms of Parkinson's and they are still adding to it. One is a loss of taste, I said to Phil: 'You've not been able to taste for ages'. I had been putting more and more spice in his food."

The couple went on to run their campsite together for four years before retiring to focus on Phil's health. "We even won awards," says Kate. "Then we got to the point where Phil couldn't do it anymore. The fatigue was incredible. The constant achiness in his hands, his feet, his shoulders… everywhere, really."

Phil began to suffer from anxiety, another Parkinson's symptom. And in February 2023 he underwent Deep Brain Stimulation (DBS), a type of brain surgery that can help with motor symptoms of Parkinson's, to help with his dystonia - a neurological movement disorder which causes painful, involuntary muscle spasms.

"Dystonia affects my jaw, which affects my speech," he says. "I decided to have the DBS as I had reached the point where my normal meds weren't working. DBS helps with my dystonia and my cramps are better. But it's not perfect."

Phil recently joined a trial which saw his medication delivered through a cannula under the skin and controlled by an automatic pump. And last year, the couple decided to "bank" his voice for the future.

A process where someone records their voice while they still have the ability to speak, voice banking is more commonly linked with suffers of Motor Neurone Disease, a life-shortening condition causing muscle weakness. "We don't know anyone who's done it in Parkinson's at all," says Kate.

"My thought was because Phil's voice is so so quiet if we didn't do it now, it would be too late. The technology means his voice can be repaired and recorded. Unfortunately, there is no funding on the for people with Parkinson's, so we have had to fund it privately."

Phil has already been using a text-to-speak app, which enables him to tell people via an automated voice that he has Parkinson's and so while his speech is affected, he does understand them. "Phil had got to the point where he was quite isolated and didn't want to leave the house because he couldn't face any sort of interaction with people," says Kate. "To be able to hear the in his own voice would be amazing."

While brain surgery has helped Phil to manage his symptoms, he takes 11 different forms of medication daily. "Phil's day starts at 3am and by the time it hits 9am he is already struggling to function," says Kate. "By the evening he can't walk, talk or eat - it's a slow burn of decline every day, it's relentless."

Despite the difficulty of living with Parkinson's, a progressive condition for which there is no cure, the couple from Truro, Cornwall, are determined to make the most of their time together. "We are making the absolute best of every single day that you have," says Kate.

"We've brought forward things that we've wanted to do. We're trying to do lots of going away, seeing family, having holidays while we can. You have to make the most of every single day."

Parkinson's UK supports every Parkinson's journey - visit or call for support and the charity rely's on amazing people like Phil to get involved in research - visit .

People with Parkinson's can also join new research projects by visiting and click choose registry..