A man with the same rare form of dementia as Bruce Willis says the diagnosis has meant he's lost his independence, his mobility and even his family.

But Eamonn Dobbyn, from Sevenoaks, has vowed to live what he has left of life to the full – before his brain deteriorates, which he knows is to come.

"I know what is going to happen next and I am just trying to do as much as I can, while I can," he said. "I know it's a journey that will come to end.

"Sometimes when you are diagnosed they give you a prognosis on the time you have left but then for the rest of your life you are ticking down a clock. I don't want to know.

"It's a different journey for every person and at a different speed. They are only really telling you how long is a piece of string."

Eamonn, of Hillingdon Rise, Sevenoaks, was diagnosed with frontotemporal dementia (FTD) four years ago when he was just 56, after his then-partner, Pat, noticed he was forgetting things, such as what he had watched on the TV and what he'd had for dinner the night before.

After he was dealt the life-changing blow, Eamonn's world became very small as he lost touch with two of his three sons and his friends vanished.

He said: "They didn't know how to deal with it. My son Matthew has ADHD and understood a bit better. He was the one who stuck around.

"People don't know how to talk to you. They talk down to you or they just don't try."

He, however, found the diagnosis a relief.

He said: "It gave me an answer as to why I was suddenly forgetting things."

But he knows it's not the same for everyone who receives the dreadful news.

He said: "A lot of people are shocked when they get the diagnosis because it's a terminal illness and you suddenly realise you are going to have a shorter lifespan.

"But you just deal with it. You could get hit by a bus tomorrow."

One of the hardest parts for Eammonn at that time was the fact he immediately lost his driving job and could no longer enjoy his favourite past-time of kayaking.

He said: "I was a multi-drop driver at the time. Because of my diagnosis I lost my licence, so I lost my job."

Eamonn said: "I used to drive 400 miles a day for my job. I loved it. Distance was never a problem. It gives you so much freedom."

Getting another job was not an option.

He said: "When they find out you have dementia, a job won't touch you."

As well as being unable to drive, Eamonn – who also used to ride a motorbike – has lost his mobility so has to rely on getting everywhere on his mobility scooter.

He said: "I can't walk more than 200 yards without needing a rest. When I go to meet people at the Alzheimer's Society in London I have my route planned out so I can sit down at regular intervals."

His lack of mobility also means he can't enjoy playing with his two-year-old grandson.

He said: "Vincent comes to visit me with Matthew. I would love to be able to run around and play football with him but I can't, and that makes me very sad."

It's not just his physical fitness that is affected. Since his diagnosis he has found actions he once took for granted are getting harder. Over the past four years, Eamonn has also lost his ability to write and struggles to read.

He said: "My brain can't tell my hand how to form the letters. It looks like a drunk spider has walked across the page. I can't even sign my own signature properly."

But Eamonn has found ways around his deteriorating health. He listens to audio books, rather than reading, and dictates emails and messages into his phone.

He is also keeping on top of any decline in his condition with an army of gadgets, including an SOS pendant and a Tap2Tag wristband, which he keeps on him at all times and can alert his next of kin if he is in trouble, as well as containing a chip storing personal information.

He said: "You learn to adapt to it."

'Sometimes I just want the world to stop turning and I don't want to be a part of it'

He has also lost his relationship – but his former partner Pat, 70, has become his carer.

He said: "The relationship broke down after my diagnosis, which often happens. But we are good friends. She gives me structure. She orders my pills every month and keeps them in order for me."

While there are no drugs to cure the disease, Eamonn takes epilepsy medication aimed at slowing the deterioration of the brain.

"They're great," he said. "I see the world through rose-tinted glasses. I don't get stressed."

One of the main symptoms of his condition is a change in personality and behaviour, including depression, withdrawal from the world and anti-social behaviour.

"I have good and bad days," he said. "Sometimes I just want the world to stop turning and don't want to be a part of it.

"You just have to ride these days out. Sometimes I'll just stay in bed and listen to an audio book."

FTD hit headlines last month when it was revealed that Hollywood actor Bruce Willis had been diagnosed with it.

The actor's family released a statement announcing the 67-year-old's diagnosis, which saw 12,000% more visitors heading to the Alzheimer’s Society website.

FTD is a less common type of dementia and is mostly diagnosed between the ages of 45 and 65, although it can also affect people younger or older than this.

Bruce Willis's condition, which occurs in one in 20 of all dementia cases, became public after fans started noticing a change in his behaviour during interviews.

He began struggling to find the right words and acting erratically – typical symptoms of the condition.

These are typical behaviours of the condition but Eamonn says he has so far escaped the more anti-social side.

He said: "You lose your moral compass, so you don't care what you say and you can be quite harsh or rude."

Because Eamonn has done a lot of research he is aware of this and tries his best to curtail it.

"I have to really think before I speak," he said. "I can fly off the handle, but at the moment I can control it. But I know there will come a time when I can't."

Eamonn is spending his final years supporting younger people who have been diagnosed, who he says often feel abandoned by the NHS system, which is rather focused on older patients with the disease.

He wants to help them feel less alone and raise awareness of the condition in the young. To find out more, click on this link

He said Bruce Willis being diagnosed has definitely brought it to the public's attention.

He said: "He could come back as a patron and do a lot of good to help raise awareness. He's done well to work for as long as he has but it's a downward spiral. He won't see old age."

Life expectancy for this form of dementia, often called Pick's disease, is seven-and-a-half years. People often die from complications linked to it, such as dysphagia – which is in inability to swallow – pneumonia or a fall.

But that isn't something at the forefront of Eamonn's thoughts, for now.

He said: "I have had an amazing life and while I can still look back on it I will.

"I will carry on living it to the full and keep doing what I'm doing, until I can't any more."