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Please note that the National Dementia Helpline will be closed today (Wednesday 26 November) for staff training. For support please visit our online support community Talking Point.

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Living with dementia, September 2007

Living with Pick's disease

Graham Browne

This is our story of a journey and beyond. My name is Graham and my wife is Debbie. My problems all started when I walked into a lamppost while being nosey. It felt like my head was bleeding, but all I got was a lump the size of an egg.

Over Christmas 2005 I became ill with a virus. I felt so terrible I could not get out of bed. I went to our brilliant GP and explained how my head was feeling - like my skull was shrinking and my brain was swelling. The GP sent me to a specialist, who arranged an MRI scan. It showed shrinkage in the frontal and temporal lobes of my brain. I was admitted to a neurological unit for four days of tests.

I was diagnosed with frontotemporal lobe degeneration (Pick's disease). Debs and I just looked at each other. Debs asked what the prognosis was. The neurologist told us that there was no cure, nor any drugs to slow down the disease. I had between two and ten years if I was lucky. It was a surreal feeling. I just went numb. Within seconds I was no longer the breadwinner. But it was also a relief because at long last we knew what was wrong.

Debs has been an absolute rock. She got a second job to help pay the bills until we settled down and tried to get ourselves straight. We have three children between us. My older daughter, who is 23, does not wish to know anything about the disease; my son, 21, knows more than me and I have to stop him talking about it sometimes; and the younger daughter, 20, is in denial.

Through our local Alzheimer's Society branch in Brighton we discovered the Towner Club for younger people with dementia. I go every Friday, and it is wonderful because when I come out at the end of the day, I feel like I have achieved something. It keeps me stimulated.

Before I went to the club, I was invited to another club for older people by my social worker. I am only 50. If I'd have wanted to sit and stare at four walls I would have stayed at home. It was not stimulating for anyone and people had no input in what they did.

I suggested doing some voluntary work for the club to introduce activities and have been taken up on the idea. I want to fight for our rights as human beings and offer people choice in what they would like, not just accept what others want us to do for an easier life.

For me this is the tip of an iceberg. We should be able to have our choice and say what we would like and not be told what to do. During Alzheimer's Awareness Week, I was asked to speak at a conference about early onset dementia in front of consultants and social workers. I typed out a speech but tore it up when I arrived and spoke from the heart. Since then, I have been asked to do more talks, which I am grateful for.

Debbie and Graham enjoy time together with grandson KyleOne of the symptoms of the disease is that you no longer feel emotions. I was told to surrender my driving licence after 25 years of being a delivery driver. I thought it would be like cutting my arm off, but surprisingly I don't miss it. After 25 years of working non-stop, I now have time to slow down, to look at the things around me. I no longer just see front doors. When Debbie is driving, I often see something to the right of me, and I throw my arm across her line of sight and ask, 'Did you see that?' I also have time to spend with my grandson, Kyle, and he makes me feel so good.

There are days when all I can do is just go off to bed. I also have days when I suffer with a lot of pain, and feel I'm not going to wake up. But the best medication we have found is to make sure we laugh every day.

Debbie's view

When Graham was diagnosed, Debbie took all her holiday as sick leave so they could come to terms with their situation.

She said, 'We were told that Graham had Pick's disease, that there was no cure, and to go and look on the internet. I was also asked if I wanted to take him home!

'It was a shock, but I knew it must have been something to do with his brain as he was behaving very differently.'

Through the internet, Debbie found the Pick's Disease Support Group, the Alzheimer's Society and the Towner Club. She said, 'Graham tries so hard to conform but it exhausts him. At the Towner Club he doesn't have to be on his guard.'

She says they still haven't come to terms with what's happened.

'We have a totally different relationship now. I've always been the dappy one in our family and now as well as watching Graham I have to take responsibility for all the finances.

'It can be hard as he doesn't feel emotions now. I can be crying and he'll just pat me like a dog. He'll tell the whole pub he's dying, not realising people don't want to hear it.'

Debbie is determined to be there for Graham, and feels upset when social services suggest he goes away for respite. She said, 'He's given so much to my family and I over the years that I want the best for him.'

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