'I don't want to embarrass my kids' - the reality of living with Parkinson's in your 30s

  • Drew says people didn't believe him about his diagnosis at first.

A dad who was diagnosed with Parkinson's at 35 is urging people to learn more about the condition - and offer help to people when they need it.

Drew Hallam, who is now 39, says he is "constantly" having to repeat to people that he has a degenerative and incurable brain condition because "so few people understand it".

Using shopping as an example, Drew says his shakes would not be as severe if he felt like he was not being watched as much by other people.

"If I'm scanning stuff and I notice next to me, there's someone looking it all just kicks off and I can't stop it.

"Depending on who that person is they'll keep looking, which makes you get worse and worse and worse, which then I need help to put stuff in the bag. But if that person understands or seen it before they do look away and or they offered to help, and that helps it calm down."

Drew reading a bedtime story for his children Paige and Wesley Credit: ITV News

Drew, who lives in St Austell, said people did not initially believe his diagnosis.

He said he even had friends say to him "you don't have that, it's an old person's disease".

Parkinson's can affect someone at any age and charity Parkinson's UK has found 55% of adults in the South West wrongly think there are treatments which stop or slow the progression of the brain condition.

Symptoms of Parkinson's appear when the brain cannot make enough dopamine to control movement properly.

Drew takes medication to reduce his involuntary movements but he does not know when his shaking will be too much to control.

"It's physically tiring because I am constantly doing like an Irish jig, but mentally, yes it is extremely tiring," he told ITV News.

"I don't very often take the kids to school or pick them up. But if I do, it's only when I'm OK because I don't want to go into the the school around looking like this I don't want to embarrass my kids.

"That breaks my heart because I'd rather get more involved and I can't."

The degenerative condition came on fast, and within three years of diagnosis Drew says he went from being "pretty able to bed-bound".

A year ago Drew had deep brain stimulation surgery, which turned the clock back on some of his symptoms. But the condition continues and it has put a lot of pressure family life -  especially on his marriage with his wife Sophie.

"It's heartbreaking because when we said our vows on the beach, and I honestly didn't really think I meant the 'in sickness and health bit', I was just saying words because I wanted to marry this girl," he said.

"Looking back, I really wish I thought about that in sickness and health, because it is here now, I'm not very well, and she's having to take on that carer of a role and she works as carer.

"She goes work and cares and then comes home and cares and it's not really fair on her."

Before drew's diagnosis Sophie said they had been quite an 'outdoorsy' family. Credit: ITV News

Sophie said the condition has been hard on them as parents, because Drew cannot physically help as much as they expected he could when they first had their children.

"It's been really up and down, I'll be completely honest," she said.

"There are times when I just get so frustrated that most of the responsibility of caregiving of the children is on my shoulders and it does have an impact on my mental health.

"I've got to try and find a balance where the children aren't impacted negatively.

"Obviously they need to understand as well that daddy is a bit different to some other dads, but I think as long as they know that they are loved, we love them to death, then I'm just hoping that I'll be enough."

Parkinson's is the fastest growing neurological condition in the world and around 145,000 people live with Parkinson’s in the UK.

Parkinson's UK funds research and hopes one day to find a cure but Beckie Port from the charity says the main drug prescribed today is the the same one researchers discovered around 60 years ago.

"We have treatments that can help mask those symptoms, but we can't slow it down."

"That's what researchers are trying to do today is to identify ways to slow down the condition and to come up with better treatments that have less side effects."

  • The Parkinson’s UK offers a free and confidential helpline for information and support: 0808 800 0303