Peter Berry's story

My wife saw it in me in the early stages, if I’m being honest, I half knew it myself.  It’s not like being ill-ill, I used excuses, told myself I had a lot going on, was writing down a lot of notes but then one day I was had to go and pick my daughter up and realised I had no idea how to get out of town to pick her up.  I realised in myself that it was no good.  I felt depressed,

When I was first diagnosed, we kept it a secret.  I don’t know why looking back.  It took a little over 18 months to tell people and it had taken 2-3 years to get a diagnosis.  They said it was depression and this or that, but eventually they did memory tests and my score was low.

After diagnosis, you have a phase of ‘What do you do next?’ and of depression and withdrawal.  It hit me and my wife hard.  We shut ourselves away and didn’t do a lot but we came to the realisation that we have to make the best of it.  We didn’t know anyone else who has it and there is no support for young people in Suffolk.  We went to dementia meetings, but everyone was much older than me and at a much later stage.  We still have to earn money to pay a mortgage.  Now we are going out for meals again and going out and about more.  If my wife is with me, it is OK.  She’s my external memory, I follow her lead.

How dementia has affected my life 

The thing I’ve found is my writing has become virtually non-existent.  I used to use measurements and do technical drawings in my work – that has completely gone. 

With money, I know what a coin looks like but can’t add them up anymore in a shop.  I have no idea how to do it.  I get round it by using contactless cards. 

With reading, I can read a few lines but I forget what I’ve read and have to go back up and down so I don’t read a great deal now. 

With television, I lose the plot or thread of the programme or film so I tend to watch wildlife documentaries instead.  They are good because they don’t have a plot so I can just watch and enjoy them.

We bought a new car 4-5 months ago.  I couldn’t tell you the make, colour or model but if we park it in a car park, I can find it.  Isn’t that odd? 

I began to find driving very difficult, I’ve had my licence renewed but haven’t driven for about a year, I kept getting lost.  There is too much information to process, I felt it was unnecessary for my survival so thought it better to stop. I felt I’d be a danger.  I still cycle a lot locally though, I’ve got an old Edwardian bike and I cycle in all weathers.   I do find that after a few miles I can forget where I am but eventually I’ll recognise a tree or a landmark that sticks in my mind and I always take my mobile phone.  I’ve had the same Blackberry for years, so using it is etched into my mind.  

Keeping busy and creating my own coping strategies

We have a large garden and I do housework.  I’ve been doing a bit of cooking - following recipes in a cook book is good because I have a large piece of paper that I move down, covering up what I’ve completed.  It narrows down the information on the page and helps me to focus on each bit.  I like to feel I can still achieve something.

With shopping lists, I put a box around each item to define each item, otherwise they run into eachother.

Our house has three doors, a front door, back door and glass doors.  I’ve painted the end of each key a colour and have put a spot on the relevant door in the same colour so I know which key goes in which door.  It’s simple stuff but is a solution to a problem for me.  The coloured dots on hot and cold taps gave me the idea.

Life post-diagnosis - not worrying about what I can't do

My daughter and son-in-law live with us and my family is only a spit away – my father who is 90 lives in a home nearby.  I find with friends, when they find out you have the condition, they direct everything to my wife and you are left out of the conversation.  I give a little wave and say, ‘I’m still in the room!’ but people don’t always understand.  I want to try and raise awareness because if people speak to me in the street, they say, ‘You look so well.’  What do they expect me to look like?  I’m not ill!

We told the people in our village and they were very upset but once they understand, they realise that I’m still the same.  They’re very good in the village.  It is a small community and I’ve lived here about 25 years, running a business so people get to know you.  If someone sees me with post in my hand, someone will inevitably tell me where the post box is!

I decided to go on a drug trial - I think the drugs are keeping me pretty level.  I think that if you don’t do research trials, they’ll never gather the information and find a cure.  It’s my way to give a bit back.  I’ve got another year to go and have had no side-effects.  I have to go to London, they pay my rail fare and contribute if I need to stay in a hotel.  It’s good because through the trial I get to have lots of scans, blood tests and monitoring whereas I had one scan, got my diagnosis and was told I’d have five years before declining drastically.  I was told there was nothing else they could do.  I don’t even have an NHS consultant. 

I find it peculiar but I am still very articulate and can speak.  And whilst I’m at this stage and can talk and communicate, I think it’s only right to help and reassure others.  I’m very keen to speak, I could speak to 500 people!  I find life has a different meaning now.  If you meet others who live with the condition, you’re on the same level as them, things click.

I don’t worry about the things I can’t do.  Sometimes I have to go around the barn to get in the door - I have to go the long way round - but I get there!  There’s no point struggling.  If you find skills and things you can do, then keep them up. 

I’ve always had a physical job in a saw mill, I have an occasional glass of wine and have always eaten well.  I’m as fit as a fiddle.  I’ve done all the things I should do to avoid dementia!  But if I can do something and some good can come of it, that is what matters to me.

- Peter was diagnosed with Alzheimer’s disease in early 2015 aged 50.  He lives in Saxmundham, Suffolk with his wife Teresa. He records a weekly video diary detailing his experiences and sharing advice for others abot living with young onset dementia.  You can follow Peter and watch his diaries on Facebook here

Peter was interviewed by Angela Rippon at the Alzheimer's Show in June 2017.  You can watch a clip from the interview below.
 

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