Man with Parkinson's whose best day is every day

Drew Hallam was diagnosed with Parkinson's when he was 35

A 40-year-old man with Parkinson's wants to share his experiences of the illness and show "it is not just an old person's disease".

Drew Hallam from St Austell in Cornwall was diagnosed with the degenerative and incurable disease in 2017.

It has severely impacted his life, with tremors that make it difficult to perform everyday functions.

"I absolutely detest it. It's embarrassing. It can be degrading," he said.

• Listen: BBC Radio Cornwall interview with Drew Hallam

As a musician who has performed in a number of bands, he first noticed his hand involuntarily shaking one night while on tour but did not think too much of it.

Things got steadily worse before Mr Hallam received the shock diagnosis of Parkinson's.

Mr Hallam has played the guitar since he was seven, but Parkinson's makes it increasingly difficult

"Three years later I was nearly bed bound," he said.

"I couldn't do my buttons up, or butter toast, and my wife Sophie was my carer. What really hurt was seeing her having to pick up all the pieces suddenly.

"That was killing me inside."

As his condition progressed, surgeons did tests and put him forward for Deep Brain Stimulus (DBS) in Bristol.

It involved a seven-hour surgery to implant electrodes in the brain, and place a pacemaker like device in his chest.

A seven hour surgery implanted electrodes into his brain

The electrodes are connected to the device using a wire under his skin, and he can control the stimulation using a remote control, helping to reduce his symptoms.

Medics warned he may lose the ability to carry out certain tasks as a result of the surgery, including his life-long passion of playing guitar.

Mr Hallam said his wife Sophie had become his carer

Mr Hallam and some friends decided to play Bohemian Rhapsody, picking a song that would show him off if he was unable to play again.

"It turned out better than I thought because I became obsessed. I was doing backing vocals throughout the night," he said.

Mr Hallam was shocked to receive messages of support from Queen drummer Roger Taylor and guitarist Brian May, after his friends sent the song to them without him knowing.

Queen drummer Roger Taylor sent a message to Drew, saying how he enjoyed his version of Bohemian Rhapsody

"I went into surgery and didn't know they had sent the song," he said.

"And I woke up from brain surgery with those messages on my phone.

"It just blew my mind. It was amazing and I still watch them nearly every day."

Before his diagnosis, Mr Hallam used to attend Glastonbury Festival

Mr Hallam has made a documentary about his experiences, partly inspired after an incident in a pub beer garden.

He said: "I was walking back to my family and my body was a bit weird because of the Parkinson's, and there were people laughing at me. That really got me.

"I thought 'that's not good enough' and wanted to make a film about it. I thought I am young enough to make an impression. People's general idea that is is an old person's disease.

"If I can show I am normal, I am not drunk, hopefully I can make a difference."

Mr Hallam became friends with actor Aiden Turner, after helping him play a character with Parkinson's

Mr Hallam, who is supported by his wife and their two children Paige, 9 and Wes, 6, said he struggled to think about the future.

He said: "The fact that I have a mortgage and I have to work to pay that, that's terrifying, because - I guarantee now I wont be able to work for the full length of my mortgage. It's just fact."

He wants to use his experience to help people understand more about the disease

Despite the challenges, Mr Hallam remains positive, even in the face of bad news.

"One of the doctors said to me something that he thought was quite depressing, but I spun it around," he said.

"He said 'I'm really sorry to say that every day is your best, and you're getting worse every day'.

"And I replied, 'Isn't it amazing to be told every day is your best? Every single day you live is your best day. I think that is incredible."

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