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.

Ken - introHi – 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.

My 12 rulesI 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.

Image2 exactly same personThe 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

Ask questionsYou 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.

new sheepIt’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.).

Sat nav - available helpEverybody 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

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.

Image6Mental 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

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.

Stay involvedFor 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.

challenge yourselfWe 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.

Eat wellThis 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.

valuable member of societyYou 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.

don't be ashamedI 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.

Raise hellIf 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.
__________________________________________

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.’

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?

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
This entry was posted in Blogs, community engagement, dementia, education, Guest blog, personalisation, social care, social media, well-being and tagged , , , , , , , , , , , , , , , . Bookmark the permalink.

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

  1. mason4233 says:

    Fantastic Ken, a brilliant outlook on life with dementia, sorry I but I couldn’t read the pictures to well but got the rest. Excellent ! See you on Tuesday 😎

    Like

  2. Kate Swaffer says:

    BRILLIANT BLOG POST, BRILLIANT RULES FOR LIVING WELL WITH DEMENTIA, BRILLIANT CONNECTIONS, BRILLIANCE AT IT BEST… THANK YOU KEN FOR SHARING YOUR WORLD. AND THANK YOU GILL FOR SHARING HIS STORY. XOX

    Like

  3. pippakelly12 says:

    What a totally brilliant blog Ken. I am constantly struck by what people living with dementia have to tell those of us who aren’t. Very well done – & may I post it on my own inferior website? All the very best, PIppa

    Like

  4. maspring37 says:

    Most of the time I feel I am lucky but then like so many people, I sometimes moan and wish I was more agile, wasn’t in pain, had more money, looked prettier and wasn’t as old. Your blog brought it home to me that I am so lucky . Great , thought provoking blog. We can see that someone has a missing limb but we can’t see the pain and worry dementia causes . Thank you for your personal insight.

    Like

  5. suenorthrop says:

    Ken and Gill – thank you so much for sharing the blog with us all. Ken your blog is brilliant and communicates so clearly and powerfully. I love the imagoes and the words, you get things across so clearly, you’ve found your vocation. Keep on squeezing the pips out of life and inspiring us all about what life with dementia can be about. Thank you.

    Like

  6. I love the images. They say so much.

    Most of all I love this phrase “You cannot be lazy and still fight dementia; nobody can do it for you.” I think it’s the same for all of life. We cannot be lazy and live life to the full. We have to choose our path, we have to take responsibility for ourselves, we have to be able to ask for help.

    Thank you Ken, and thank you Gill. Go on raising hell out there.

    Like

  7. Wendy Brewin says:

    Ken’s blog is eloquent and inspirational…..sadly I can’t make it to the Expo to meet him, I hope that many others do.

    Like

  8. Another brilliant blog. Many thanks to Ken for sharing his story and his top tips – I think we can all learn from those. On a personal note, I also love cooking, so we will have to swap some recipes Ken! Hope to see you all tomorrow at the NHS Expo. All the best, Beth

    Like

  9. Janet Pitts says:

    This blog was very motivational, which is great because I started out hyped about the prospects of the day ahead. Ken, your are extremely gifted at sharing your thoughts and your passion. Our paths are getting ready to cross through DAI and I truly look forward to getting to know you.

    Like

  10. Beryl says:

    Thank you Ken. I hope I never have to face what you are going through but if I do I will try and remember your rules. In fact I think I might start some of them now as they make such good sense!

    Like

  11. sandiespring says:

    Reblogged this on sandiespring and commented:
    Good for you Ken!

    Like

  12. Thank you all for your great comments. Ken will be really thrilled. As you know, he has a problem with reading and writing but not with (as Sandra says) squeezing the pips out of life.
    We have had a wonderful day at NHS Expo and finished off with a nice meal and a drink in the evening. I have only just seen all the comments and will enjoy reading them to Ken tomorrow. I read him my introduction and it was very moving to talk to him about the fact that he now feels that he has a voice. He is genuinely surprised and thrilled that people are reading his blog and finding it useful. Please keep sharing it and spreading his message and linking to our NHS change Day campaign pledge as this is exactly what we are trying to do.
    If you are at NHS Expo tomorrow, you will have the rare opportunity to come and chat to Ken and Chris at our Whose Shoes? workshop at 11:30 in the Dementia Café. Please come along and join the discussions! 🙂

    Like

  13. Charmaine Hardy says:

    This is great Ken you are doing brilliantly. My husband has PPA dementia & can’t speak never lone write. Well done I’ve learnt a lot. Keep going

    Like

  14. Celia says:

    Thank you Ken for your wise words. They make so much sense, and are a good rule for living, irrespective of whether or not you are living with dementia. Keep strong, you are doing amazing work.

    Like

  15. Thanks Ken. This was a pleasure to read and some great insights – it strikes me that much of the advice is pretty good for anyone wanting to live well to follow!

    Like

  16. Peter Gooley says:

    Thanks for sharing your insights Ken. I am 1 meeting away from having a live radio show on a community station that I am going to title Dementia Hour. I know that 1 hour a week is not enough, but it’s a start, and if I can get funding to help pay for my time (mortgage), I’ll be expanding it to other stations.. all the best mate..
    Peter Gooley
    Independent Alzheimer’s and Dementia Coach.

    Like

  17. mason4233 says:

    Reblogged this on Dementia survivor, so far….. and commented:
    Excellent advice ! Thank you Ken

    Like

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  19. Wendy Sharps says:

    Hi im wendy sharps and I have youg onset Dementia I was diagnosed when I was 40 but had the symptoms at35 im now 45 I read your blog it was spot on im still a wife mother and granny to my 2 grand kids frankie 6 and tommy 2 ive just got tommy is 1 st swimming badge I take him to is lesson and get in the water with him and frankies just got her 1 st gymnastic badge I take her to her lessons even though I have help to do this I stil am me I just wanted to say thank you for your blog im sure it will help a lot of other people with these conditions

    Like

    • Thank you so much for your comment, Wendy and for telling us about the way you carry on doing the things that are important to you. Well done on your positive attitude and approach to life and I’m sure your family really appreciate the support you give to them. Ken is a very proud and devoted grandparent too. I know Ken is keen to be in touch with other people living with dementia and will make sure he sees your comment 🙂

      Like

  20. Anna Geyer says:

    Hi Ken, I’ve only just got round to reading your blog. Its a real honour to have spent time with you and your insights into living with dementia never stop to leave me full of admiration of how you manage your life day to day and adapt to your changing world. Thanks for sharing your blog x

    Like

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  22. Carol Ridlington says:

    Hi Ken, I’m so pleased that I read your blog this morning! Your story is one of hidden depth and true resilience that we can all learn so much from – and it’s a story that’s continuing to unfold! Thank you so much for sharing your inspirational journey.

    Like

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  24. Anna says:

    Hi Ken and Gill, I was privileged enough to hear Ken speaking at an Alzheimer’s Society staff conference last year and have always remembered the courage it must have taken to stand there and share his story with us, giving us invaluable insight into how we can best support people with dementia. This blog is incredibly brave and I thank Ken for the work he is doing to give people with dementia a voice, not only people who are currently living with dementia but also those people who are no longer with us and were not treated with the dignity and respect that we should be demanding. Keep fighting Ken, it’s the only way we can beat Goliath.

    Like

  25. Natalie says:

    Amazing blog, very inspiring to see it from someone with dementia’s eyes.

    Like

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  30. Helen Deal says:

    This was very interesting – thank you Ken for your very straightforward and emotive insights into living with dementia. I have just lost my Mum who had Alzheimers. I have often been upset, disappointed, furious .. at the responses of people to her. Old friends abandoned her because ‘it made them too sad’ to see her… the carers at her home were kind, and helped a great deal, but there was no real empathy or understanding of how they as individuals/ an organisation could enhance my Mum’s quality of life. There is not enough interest – Mum’s care home felt like a benevolent holding pen as she gradually declined. They could have brought out so many qualities in her. I am in mourning and I’m angry – you are doing good work in raising awareness .. maybe I will join you soon.

    Like

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  34. normc1957 says:

    Such honesty and for sight will win the day my friend Ken, so proud of you, Norrms and family

    Like

  35. Will@DoCare says:

    Will from DoCare here, we are a home care provider based in and around Gloucestershire, many of our clients and their families are living with Dementia and we will be sharing Ken’s insights and advice with them via our Facebook page. Thank you for sharing your experiences Ken, I am certain your story will provide both help and support to members of our DoCare family.

    Like

  36. Ken and Gill, thank you for posting. I too have young-onset early stage dementia. Especially appreciate “You cannot be lazy and still fight dementia; nobody can do it for you.” Gill, you said “We need to encourage more people like Ken and Chris to tell their stories.” Just started a blog at http://truthfulkindness.com/ .

    Like

  37. Anonymous says:

    Hi Ken
    As a person who was diagnosed at 61 with alzheimers what you said about the way you got your diagnosis struck a chord. I still am the person I was before and with a few adjustments have been able to carry on. Thanks to Age UK we now have a young onset alzheimers group for people younger than 65 and believe it or not it is growing by the week. I am trying my best to spread the word that you can live well with dementia.

    Like

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