Ken H's story

Photo of Ken sitting astride a Harley Davison motorbike

Realising it is not the end

I was diagnosed with Alzheimer's disease about five years ago in my mid-50's. Being diagnosed with dementia is brutal.  It is horrendous.  Only someone who has been through it can understand.  You are given a mental death sentence.  

I felt the doctor left me in that frame of mind and left me to pick up the pieces of my life.  Someone needs to give you hope, and tell you that you won't be a burden.  You have to realise that this is not the end.  You walk away and nothing's changed but everything is different.  

Do things for yourself 

Decay sets in at the moment of diagnosis - medically nothing can be done - but you can do a lot for yourself.  Well meaning people can destroy your confidence.  My wife is technically my carer but you need to continue to do things for yourself.  There is a fine line between doing too much for someone and giving them the help they need.  

It is easy to look for reasons to not do things like going to the shops and people offer to go so you don't have to, but I now make a point of doing everything.  I like to push things, do things that are scary - it makes me realise how alive I am.  I make sure I have a project ongoing at all times.  I rebuilt a Harley Davison.  My friends would come round and check that I had put the wheel nuts etc on.

I used to earn a lot of money and I find it very frustrating not being able to work but I take great pleasure now in simple things like walking our dog in the woods and I do all the cooking and cleaning.  We eat fresh vegetables and home cooked food.  I try to have a healthy lifestyle now.  My life is pretty normal apart from the fact that I can't work.

Keep your brain active 

I got some excellent advice after the depression of my diagnosis from a clever friend of mine called Liz.  She told me that there is nothing I can do to stop Alzheimer's attacking my brain or repair it, but keeping it active and full of blood can create new neural pathways.  

We got our dog, Blue, during my diagnosis and I didn't realise the good he was doing me.  He makes me exercise which keeps the blood flowing to my brain.  I am conscious that I have a shelf-life.  This can make me impatient and frustrated but I am now trying to achieve as much as I can.  

- Ken Howard lives in Coventry.  He is married with two children and one grandchild.  He gives talks in local schools about dementia and is an Alzheimer's Society Ambassador.  He has spoken at a number of public events about dementia and is passionate about increasing awareness.  

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