In the shoes of … | Ken Howard, living with younger onset dementia

I always feel very privileged when people tell their stories through my ‘in my shoes’ series. But never more so than today.

Today is NHS Change Day and today’s blog is a ‘special edition’ as part of our global #NHSChangeDay campaign to enable people living with dementia to speak out about what is important to them.

Today’s blogpost by Ken Howard has taken an enormous amount of effort on Ken’s part.

Ken is living with younger onset dementia. In the past, Ken was an avid reader but one of the things he really struggles with now is reading and writing.

I have come to know Ken well, over the past year or so. Ken is very articulate and has taught me so much about his life with dementia – how it affects him personally.

Ken enjoys getting involved in my Whose Shoes? workshops and people learn so much from him. Not least the students at the College of Medicine Summer School.

You can see Ken in action at a very recent session here and read about it here.

Ken and I sit chatting for hours. Ken’s passion and enthusiasm to raise awareness and reduce stigma are incredibly moving.

He has told me, “I am conscious that I have a short shelf life. It makes me impatient and frustrated that progress is so slow. I am trying to achieve as much as I can.”

 As we chat, we sometimes make wonderful audio recordings.

But Ken was determined to write his blog. Write it in a way that makes sense to him.

Ken has produced all the text and images himself. His blog offers a rare insight and is pure common sense.

Why should someone’s life become completely different post diagnosis .

Why should they accept that they can no longer do the things they love doing? – (described by Kate Swaffer as ‘prescribed disengagement’.)

Please read Ken’s story. Please post comments and tell him what his blog means to you.

Hi – my name is Ken Howard and I was diagnosed with Dementia around eight years ago but have been living with its effects considerably longer. I have largely lost the ability to read and write except for twitter type messages so I am dictating this intro, all the rest of this blog is completely my own work. So this may be a slightly unusual document but I wanted to be able to read it, along with anyone who has similar problems. Gill suggested to me that I write it so I thought ill give it a go.

I have split it into 12 sections which describe how I try to control my condition (so far successfully). The Font I am using is large because that makes it easier for me to read. With words becoming more difficult to read pictures have become more important as a way of conveying a message. This document is very personal and I have described to the best of my ability what works for me. If some of the images seem confusing and complicated, then think that text is that confusing and complicated to me. Take your time, relax and look. Only move on when you can read my image. I have created this document with the hope that it may help other people whether they are living with or caring for someone living with Dementia or maybe just interested.

I am only an expert on me.

The image shows the mental journey you take in the few minutes it takes to receive the diagnosis, better than words.

Two of the thoughts that went through my mind

Nothing changes but everything’s different   (true)

I have a mental death sentence (only if you allow it to be)

You cannot believe the stereotype you really are the same person but with more knowledge.

You cannot be lazy and still fight dementia; nobody can do it for you.

But you can fight it

You have a million questions ask them all!

Do not worry about being a nuisance.

Don’t worry about seeming stupid.

Ask questions until you completely understand what you need to understand.

Do not allow yourself to be fobbed off.

If the expert cannot explain to you in a way you can understand. That is their fault they are not that good, demand to speak to someone who can explain.

The more you know about your condition the more you can fight it.

It’s very easy to allow well meaning people to make decisions for you.

Or not so well meaning people because it’s easier for them.

You can still enjoy the same things now as you did before.

Make the decisions yourself on how you dress.

Eat the food you have always enjoyed, Etc.

Try to retain your life style (You may need a bit of help, but you decide.).

Everybody uses aids; it’s not cheating to use a satnav when you are driving around, is it?

Aids do not have to be expensive or complicated.

Here are some of my aids:

Keys going into pocket on the back of my front door.

A hook for my keys so I always know where they are.

I leave myself notes so I know where I’m up to when returning to a task.

A calendar I made so I can mark of the day after I have taken my pills.

Asking someone, people nearly always want to help.

Hearsall Common and Blue my long suffering exercise companion

Post diagnosis it’s very easy to become sedentary.

We need exercise to keep a good blood flow to the brain (keep it in good nick).

We need exercise to retain muscle tone.

We need exercise to stay in touch with life.

Exercise makes you feel better and gives a purpose.

Exercise can reduce stress.

Exercise can help your self esteem.

Mental exercise is vital, creative mental exercise works for me.

First photo set rebuilding my beloved Harley.

A large indoor bird cage I designed and built for my parents.

Design for a t-shirt I created.

Talking, debating and general conversation is all fantastic.

You need to find what works for you and throw yourself into it.

I also find cooking and finding new recipes fantastic.

Doing the ironing does NOT help that kills my soul.

Hearsall Common one Christmas morning

For me stress is the mind killer, it makes my condition much worse.

Walking on the common helps my stress levels.

Not beating myself up over making mistakes.

Relying on the aids I have helps keep my stress down.

Riding my Harley really helps.

Not worrying about what I can’t do is essential.

Relaxing, socializing with friends.

The very best way to de stress spending time with my wife and family.

For me it would be very easy to allow my world to shrink and to rely on people more and more and lose touch with life.

I do not allow this to happen so I;

Joined the Alzheimer’s Society as a Media Ambassador.

Work with Gill and her Whose Shoes Project.

Talk to schools and anyone who will listen about Dementia awareness.

Challenge myself.

Drive myself to destinations wherever they are and then park away so I have a mile or so to walk and risk getting lost.

Become thick skinned when dealing with ignorant people

Do things that scare me a bit.

We all need goals choosing your goals are important.

If the goal is too easy it’s not a challenge.

If the goal is too difficult it just causes frustration and damages self esteem.

The right challenge will make you struggle, but allow you to ultimately succeed have a huge sense of achievement.

The world is full of challenges choose carefully.

Expand your mental horizons.

Become proud of your achievements.

Create new neural pathways.

This should be obvious really.

Make a point of having your 5 a day or even 6 a day.

You now have more free time so cook fresh food.

There thousands of recipes freely available.

Help the whole family to eat more healthily.

Clean plates at the end of a meal are a huge compliment.

Cut down on red meat and fried food there are fantastic alternatives.

Maybe get an allotment and grow your own veg.

You still have an active vital role to play in society how you do it is up to you.

Talk to people help reduce stigma.

Join with other sufferers, form a self help group.

Teach other people some of your own skills.

Take a more active role within the family.

Become an ear for people, listen to them.

Volunteer to help in whatever way you can.

Support family and friends.

Remember just because you don’t get paid for doing something that doesn’t mean has no value.

I don’t think I can add anything to this.

Unless we find better ways of helping dementia sufferers the whole country will suffer. We all need to learn to respect people and treat them with compassion.

If by following my own rules I can slow the progress of my condition and keep myself out of care for 5 years how much will that save the country.

Now multiply that by a couple of million.

You cannot be lazy and still fight dementia; nobody can do it for you.

This is the world through my eyes. I fight Dementia every day.

Welcome to my world        Ken Howard

Thank you for taking the time to read this blog, I hope you found something helpful within it.

If you are at NHS Expo, come and meet Ken to learn more. He will be joining us for our Whose Shoes? session tomorrow (Tuesday 4 March) 11.30am – 12.30 in the Dementia Café.
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We will also be joined by Chris Roberts and his wife.
Chris wrote a very popular ‘in my shoes’ blog recently. He has also just been featured in a video about dementia friendly communities.

And we will be joined by Dorothy Hall and other family carers.
We can all learn so much from ‘experts by experience.’

@WhoseShoes @JenKenward @NHSExpo @tommyNtour @Uberology @kenhowarduk @mason4233 @DozzaHall Ken, Chris and Dorothy too? Fantastic! :0)

— Marie Batey🌿🤍🌼 (@Marie_Batey) February 27, 2014

@WhoseShoes with your permission .Could you add a note to it stating that i am happy to share it thanks. pic.twitter.com/6wsdzRpYva

— Ken Howard (@kenhowarduk) March 6, 2014

Please share the link to Ken’s blog post! Please post comments and tell Ken what his blog means to you. We need to encourage more people like Ken and Chris to tell their stories.

2014 is indeed, as Ken says, the year to raise hell and challenge dementia!

If you agree, please ‘like’ or join our NHS Change Day pledge. What can YOU do to make life better for people living with dementia?