Walking the (black) dog

Of course, you all know, Lupin is not black.

Lupin is the most luxurious chestnut light brown you can imagine.

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But right beside her is the black dog. The one that lopes along, mostly hidden in Lupin’s shadow, the one that leaps out now and then, without warning.

 

You’d think it might have got tired of dogging my footsteps by now.

You’d think I might have learned to shut it away, lock it up, kick it up the arse.

But no, ever so quietly, it lopes along.

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And waits.

I was at the Alzheimers Show in London two weeks ago. A medical expert gave a talk about dementia. And the bit that really struck me, and stuck with me, was the fact that dementia (brain disease) causes an imbalance of chemicals in the brain.

A high proportion of people living with dementia also live with depression. They don’t have enough acetylcholine in their brains. Or seratonin. Or something.

Well, I’m one of them. If I get my depression meds wrong I am a mess. And I do. And I am.

And then I get the old black dog leaping out. In my face. In my head.

And everything annoys me. And everyone annoys me.

Today I went shopping in the local little town supermarket.

Well first, there were loads of cars on our narrow overgrown lane, half of whom could not reverse. Once is fine. Twice is painful. Thrice is a bashing.

Then the supermarket was busy and bustling. People chatting, kids, well, being kids. And the checkout boy holding a conversation with the next one up, about some idiotic family argument or something.

Oh my God. It was just overpowering. I felt like I my head was encased in a pudding basin of noise and interference.

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(Without the syrup sponge or spotted dick to enjoy.)

Yesterday my wife took me for a surprise to Manchester, to the Halle Orchestra. It was a one hour concert of loud, lively, orchestral and choral works. And it was fabulous.

But all through the journeys to and from Manchester I could not hear what Jane was saying, and needed repetition and clarification every time.

Guess what? When I went to bed I found that I had not turned my hearing aids on.

F..k, f..k, f..k.

How one earth could I forget that?

I hope the black dog will have hidden back in the shadows tomorrow.

Because I hate shouting at the brown one.

I think we should all be very aware of the depression that overtakes many people living with dementia.

If you’ve got a chemical imbalance you need meds to correct it. Or you drive yourself mad. Or worse.

It’s not bad to be on anti-depressants if you need them to function properly.

It’s not something to feel guilty about.

Any more than taking donepezil, or any other medication, is intrinsically wrong. No, it’s right.

There are people who will read this and think (and possibly write) that I should use alternative remedies, relaxation techniques, faith…

Well sorry folks…give me the pills. I haven’t got time to try things out which have no basis in evidence.

So I’ll continue to walk Lupin and stay on the sunny side as long as I can.

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And hope the black one stays hidden away, in the shadows.

Oh my gladioli

As the song goes, it’s nine o clock on a Friday night…play me a song, you’re the piano man…

And it’s time to write a blog.

And we’re in for a very hot weekend.

The flowers I am growing for my elder son’s wedding are coming well, and should be in bloom in a month, on time.


I have had a fascinating two weeks, with a speech to Shropshire disability network and a workshop at the Alzheimers Show  with DEEP, about what is good for my (our) wellbeing.

And yesterday I was at a new patient co-production network design group in London talking about how we would develop the network in the future.

So, yes, I’m busy. Or, as I said to a swimming and dementia friends colleague today, I have been just doing stuff. Without which I would be bored.

What was striking about the six of us in London last week, who all have young onset brain disease (dementia), oh my gladioliwas that we all said our diagnosis gave us new life.

Yes, it’s shit.

Yes, it’s bereavement.

Yes, it’s the road to nowhere.

But we all, unrehearsed, said we now do things which we would not have done without the diagnosis.

It’s a sort of release from those last ten years of managing to stay in your job. Struggling to survive. Wanting to do other things, those dreams.

We just have fun. Or write poetry. Or walk. Or cycle (a long way). 

We are not sad. We are not doomed. We are not imprisoned.

We are released.

Bit like “when I am old I will wear purple”.

It’s a release.

Why the hell does it take brain disease and impairment to allow us to be able to just do what we want?

It’s like being a hippy in 1967. Flower power.
Do you remember that fab song, Are you going to San Francisco? Scott Mackenzie, I think.

And Woodstock.


I feel liberated. Free of the conventions and rules that govern people.

I don’t have to wear a suit every day. Or acceptable shoes. Or organise maternity cover. Or negotiate with a member of staff who arrives late every day. Or find ways to get rid of staff without sacking them. Or do the monthly time sheets.

No, I can walk with Lupin up a hill. Talk to a stranger at Colemere with a husky cross rescue from Indonesia. (Yes, true.)

I can grow flowers for my son’s wedding. And have a beer with him. And get measured for tails.

Yes, I make mistakes. I find I have not taken a certain pill for a few days. Or I’ve lost (thrown away) my shoes. Or I fall over. Or I wonder which way to get back from the toilets.

But I tell you what…I’m right on the money if I have time to prepare my brain. 
……..

I’ve recently been doing some work to establish a new network of people/patients with long term conditions and life changing diseases or disabilities across the country, to promote co-production in healthcare.

We are a small group, head-hunted (no less), and I just find the other people involved wonderful to be with.

So enthusiastic, so knowledgeable. Diverse. Driven by values, and all committed to influencing change in the NHS.

I have had issues with the patient leader programme. It started a few years ago with an open access training programme of six sessions. Self-selected membership.

And many of the patient leaders from this programme were anything but leaders.

But our new network, which we are still designing before launch, will be different.

It won’t be a hierarchical organisation.

It won’t be a free for all.

And it won’t accredit just anyone who chooses to sign up.

What it will be is a pool of people with the skills and values to lead or take part in co-design and co-production around the country. 

We will introduce a new paradigm for patient engagement.

We will be equal, respected partners with paid NHS staff.

We will be valued because we will bring about shared solutions that are equally beneficial for patients and providers.

……..

I also recently met the commissioners for mental health services and dementia in Shropshire to talk about why on earth there is so little worthwhile support for people living with dementia here.

Post code lottery.

After lots of detailed explanations, it became clear to the three of us that if there was no money available we would have to create ultra low cost solutions. Community based.

So, we will work to set up a county wide network of peer support groups, for mental health and dementia illnesses, and to develop co-production with providers for the services WE want.

The reasoning is that if the commissioners are (for one reason or another) unable to change their pattern of spending, we service users should combine to work with the provider to change what they provide to what WE want.

Co-design. Co-production. Service users at the heart of services. Personalised care.

You name it…we want it. And it doesn’t need to cost much. 

If we mobilise we can get it.

The impact of dementia

This is an edited version of a speech I gave today to the Shropshire Disability Network.

Dementia is a generic name for symptoms resulting from brain disease.

Depending on what the disease affects, your brain may shrink, neurons may tangle and stop transmitting, and very specific functions may work less well or not at all.

There are well over one hundred different diagnoses for dementia, the most common being Alzheimers, vascular, dementia with lewy bodies and frontotemporal lobe.

But everyone is affected differently. Everyone’s symptoms are different.

 

Once you’ve met one person with dementia…you’ve met one person with dementia.

In my case….about six years ago I realised I was having difficulty organising my work, remembering what I’d said to whom, at which meeting, forgetting names, taking a little longer to explain myself.

I was working part time, having resigned from a full time job with stress. My doctor assessed that I was stressed. And that my cognitive impairment was related to work stress and depression.

I had visited the memory service when I was unable to work full time, and had a brain scan. But the diagnosis at the time was depression and stress.

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Later, in my part time work, I started to use my own iPad for recording and organising everything I did. Every conversation was noted, every meeting summarised. Every appointment recorded. There for me to check regularly and frequently. I managed.

But I could not grasp the explanations of a complicated system that my team used in their work. Time and again they explained and I just could not get it. And remember it.

Eventually that job came to an end, for complicated reasons, and I asked my GP – for the third time – for referral back to the memory service for assessment for dementia. My wife and I knew that I was not functioning properly.

I remember having to have silence in the car trying to navigate in France on a family holiday. I could not work anything out if there was music or conversations going on. That has not changed!

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It took a day and a half of tests and a brain scan to come to a diagnosis of mixed dementia….Alzheimers and vascular. You see, I have a fairly high IQ, a degree and professional qualifications, and I compensate for my reduced functioning. So most people don’t think I could possibly have dementia.

They say…”well if you’ve got dementia I must have too. I lose my keys all the time. I can’t remember people’s names.” Etc etc.

You see, people think (and I include GPs) that dementia is about memory difficulties. And they think you only get the brain disease that results in dementia when you’re old, in your seventies and eighties.

So, what is the impact of this brain disease on me and others who live with dementia?

I do have difficulties with words, especially with people I don’t know well. I can’t process incoming signals as fast as you, and it takes very little distraction to put me off my stride.

Hence, I can’t have music and conversation at the same time, or TV for that matter.

If you ask me something I’m not expecting I may not be able to answer. I have to be zoned in. I have to find the bit of my mind that I need for a particular reason. Then I’m ok. It takes time for my brain to find a route through to the memory or the thought that I need.

You see, if you’ve got billions of cells in your brain, billions of neurons that link up in billions of different patterns to create billions of memories and calculations, if a few million go down it might be a very small proportion, but that tiny, particular function will not work as well or as fast as before.

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So you slow down. Conversations have pauses. Listeners have to give me time to work out what I want to say and then say it. I tend to avoid starting conversations with people I don’t know at parties or meals together because I can get foggy after the usual cliches. And if they ask me about me I can stick completely.

I find I make mistakes judging distances, steps, changes in floor level. Dark patches or stripey patterns fool me and I may lose my balance, or miss a step. Or just feel discombobulated.

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Occasionally I lose touch with where I am. Disorientation. The first time it happened I was shopping in Aldi. For about ten seconds I hadn’t a clue where I was. Then it came back. Doesn’t happen often thankfully.

I cannot fix names in my memory. Well. I can sometimes fix them, but many names just won’t stick. So, a PA at SATH recently told me her name several times in the space of one afternoon. I tried and tried to fix it. But it just went. Flew away. And there’s a plant I cannot remember. Euphorbia. I have to find ways round to find it. Or just point to it and wait for my wife to complete the sentence.

I have almost lost my sense of smell. That’s both good and bad. I would love to smell the freshly cut grass at home, and flowers and roses, or damp woodland, walking with my dog. But I also cannot smell the less attractive smells…which I’d better not name.

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What is the impact of brain disease on my life?

Unlike a person I met recently (who ought to have known better) I don’t regard it as sad. It’s not ended my life. It’s not a death sentence.

It has merely slowed me down a little. I can still do everything I could four years ago. But I do now make choices that I wouldn’t have thought about before.

For example, if I can I avoid crowded places, like noisy restaurants or pubs or parties. I prefer to invite two or four friends round for a meal at home, where I can control the environment and can talk and listen easily.

If I do have people around when I’m cooking I ask them to go elsewhere while I cook. I can’t think about what I’m doing and have loads of noise and conversations going on around me.

I don’t drive in the dark. It’s to do with lights in my eyes, and flashing, which just disorientates me.
……..

But the biggest impact has been through meeting a lot of lovely, enthusiastic people who also live with dementia and work to raise awareness and improve support, around the country. I really enjoy meeting up now and then, perhaps in London or North Wales, or Shrewsbury.

I feel excited to work to improve life for people living with dementia. It’s given me a new challenge and every time something goes well I feel tremendously pleased. And vindicated.

Because sometimes you can feel quite alone, and it’s really important to be reminded that others think the same and are working to improve life for people living with dementia.

Twitter and Facebook are tremendously helpful in sharing information and keeping up with what’s happening around the country.

……..

I am lucky. Really. I got my diagnosis quite early on in the progress of my brain disease. So I have lots of time to do things I planned for later in life, and to be active and engaged in the community.

I don’t regard it as sad that I’ve got dementia. It’s shit, but it’s just life, just like getting cancer (which I’ve also had) or heart disease (which I also have).

I’m not always optimistic. Far from it. I have black days. Black dogs. But doing stuff to improve people’s lives is mostly rewarding and even fun.

I’ve started two DEEP groups, in Shrewsbury and Church Stretton. These are just social meeting groups for people living with dementia to meet, chat, share experiences and information. And to have someone listen to them.

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The impact of these brain diseases on many people living with dementia is disempowerment. One or two people who come to the DEEP groups speak of being told they are useless by their family members, or having their wives speak for them all the time. I see men just stop talking because they have given up, and they know their wives will just take over. Or not wait for them to find their words. When we meet away from family and Carers we open up. We share what we actually feel. Often frustration and bloody annoyance.

Of course, it’s not easy for spouses or other family members. It’s bereavement. For both sides. But we really need to provide support for people living with dementia, and training and support for their spouses and families. There’s a great little training course called “getting along” which I’m hoping to bring to Shropshire soon to help couples get over these difficulties.
……..

Now let’s think about disabilities.

Let me quote from a DEEP guide to dementia and rights…called Our Dementia, Our Rights.

“Many people find it hard to think of their dementia as a disability, and are understandably reluctant to take on another ‘label’.
The fact is that dementia is counted as a disability if it causes “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities” (Equality Act 2010).
Likewise, Article 1 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) states that “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.”
The word ‘disability’ is therefore not a stigmatising label imposed upon individuals. It is just a means to an end, a tool.
Another group–people with mental health difficulties–don’t consider themselves as disabled either, but they have made very good use of the UN Convention to claim their rights.
So, even if you don’t think of dementia as a disability, the law does define the impairments it may cause in this way–and this can be to your benefit.”

I don’t think of myself as disabled.

There are things I cannot do as well or as easily as ten years ago. And my symptoms will get worse. There’s no question about that.

But am I disabled?

I say no. I still have plenty of abilities. I am able to do whatever I want. I can take risks. I can cook. I can walk up hills. I can shop. I can work with directors of NHS trusts. I can speak at conferences, organise DEEP meeting groups, chair a patient panel at an NHS Trust.

It just takes a little more effort and organising than ten years ago.

But I do think that the legal definition of disability is important because it allows people to use the law to influence change. So I accept that I am, by law, disabled, because that is the way we people living with disease or physical impairment can get equality of access and treatment.

But please don’t let “disabled” define you. Disabled is just a word that allows us to get some benefits (though that’s increasingly difficult) and to be guaranteed certain rights.

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Intrinsically, we are not unable to do things, to live our lives as we choose.

We simply are not perfect. But, you know, no one is.

Everyone has impairments from perfection. Whether it be intellectual or physical.

I want everyone in Shropshire and Telford to simply be accepted for being people. We have incredibly diversity.

I hear people say, time and again, “of course, we don’t have diversity in Shropshire”. What they mean is, we’re 99% white Caucasian.

But we are all different. Every person with brain disease is different. Every person has different physical abilities. Every person has different life experiences, memories, family memories, personalities…

We have phenomenal diversity. So let’s celebrate diversity in Shropshire and Telford.

We all lead our lives. We all make choices. We all take risks. And we all have huge amounts to contribute to the community.

I welcome our differences. And I won’t be defined by dementia.

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