Real stories

Adjusting to my diagnosis of early-onset dementia - Alison's story

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A shocking diagnosis

Early-onset Alzheimer’s isn’t the end of everything.

Don’t get me wrong. Initially, my diagnosis seemed horrendous, unbelievable and it took a lot of getting used to. My short-term memory lets me down and my organizational skills are poor. Sometimes I can’t believe how much I have changed from my old self...but in other ways I have changed very little.

In my case, I developed epilepsy first, then was diagnosed with Alzheimer’s by my specialist after many tests and a stay at St George’s.

It felt like the end of my life. I was given the diagnosis of Alzheimer’s on my own, which I thought was badly managed.

That was a very lonely time. My specialist noted later that I seemed to be “somewhat shocked at the news”. Well, wouldn’t anyone? This was not something I had even thought of.

Learning to live with early onset Alzheimer's 

But after the dust had settled, and all the tests were done, I realised I was still me. Still loved my family and friends. I still enjoy my hobbies of gardening, singing in a choir, going to the book group I had started in happier times. I still enjoy going out for meals with my friends, attending classes in Pilates, Zumba and keeping fit.

Friends and family are happy to help in any way. Especially driving me around, since my driving licence was snatched away, leaving me to get me around with a bus pass instead. Good. But not the same as a car.

I lose the plot a lot, figuratively and relatively, but I can still do most of what I used to do before I became ill, albeit slower and guided by a rather random logic! My short-term memory is appalling, which is very irritating to everyone. My husband refers to it as my “gnat brain”… We take our humour as we find it!

Writing into the future

I started writing about my condition as away of dealing with it, and it has become very comforting. I was an editor before I was ill, and although my brain is rather wobbly now, just writing my thoughts down is quite cathartic. Words are my tools. You might like to use them yourself.

Looking ahead, I know that my horizon is not one I had thought of, even considered, but it is my horizon now. It is up to me to make it as good a one for all of us as possible.

I understand that my life will be different to the dreams I had nurtured, and poor Steve will have to bear my decline, but the sea keeps flowing and I keep dreaming and hoping. 

For a cure? Maybe. I don’t look too far ahead. One day at a time is just fine with me…which is just as well  with my memory…!

Alison's poem

‘Am I someone I know, or just a copy of what I used to be?’

Am I a mirror of my old self, now pared down to the bone?

Am I still viable as a person, or just a memory of what I once was?

Perhaps the memories I have are only mirages of the mind…

More and more, my brain takes me back to childhood, muddling the brain.

Semi-remembered times and places dance before my brain,

Is it now common for one to time travel?

But…

Oh brave new world, please take me back to “Go” so I can have another chance at the muddle that is my life...

There is more to me than the diagnosis of Alzheimer’s.

There is me.