Pilot Decision Making Tool for GP’s (UK)

I got word recently that there is a pilot decision making tool for GP’s in the UK going out this year. This is to aid Dr’s to make a diagnosis in dementia in younger people. I have looked at a copy of the tool in question and its amazing.

I think back to how I got diagnosed and what a fight I had to get anyone to believe that there was anything wrong because of my age at that time. 45 …… Stress and depression were bantered about and although I was under stress with my job I knew my signs and symptoms weren’t caused by stress.

This tool is a long time in coming and I am glad its here to help new patients my age. Hopefully it will help Dr’s not put everything in a box as well.

At the moment if I have to see my Dr and I do try not to, the first thing they say is ” How do you know what you have is nothing to do with your dementia?” As if to say, now when you have anything wrong its the dementia’s fault and we can’t help you!!!

This response is very frustrating and it takes all my effort not to walk out and never go back for this is what I really want to do. Last time I went, they blamed the symptoms of my menopause on the dementia!!! What!! Lol!! Then they took note when I told them what my symptoms were.

I have to say on a positive note that the nurses and nurse practitioner are fantastic and I usually see Sue over the Dr’s any day. Sue always asks how I am coping with my dementia after i have spoken to her about whatever I have gone there for which shows she cares.

Hopefully this new tool will help my GP’s as well.

(The link to the tool is here https://www.youngdementiauk.org/gp-decision-making-tool

There is a feedback survey too on the webpage & all comments would be gratefully appreciated so the final version of the tool can be made the best it possibly can be)

New Research Project

Yesterday, a few of us went to a meeting at our local health centre. We met a young researcher from Oxford who was collating research on how to make travelling on public transport better for everyone, especially those living with dementia.

It was interesting cause she listened to our experiences when we use buses or trains.

Like I always have to sit near a bell on the bus, but then so does a few of us. Or how complex it is catching a train, especially going to London where it’s so busy and manic. She was interested in what sort of technology we use to help us in getting through life. For me, i use Google Maps a lot, my calendar on my phone is my lifeline and I use Google a lot, How do I……… is typed a lot as have no clue otherwise.

This researcher and others are trying to devise a device or app that will help us use public transport in the future. So it’s a case of watching this space. We said we didn’t mind trialing it when it did come out.

I like anything that is positive and this is hugely positive 💖

Talk about Living Well with Dementia

Yesterday, I did my first talk of the year. I always get nervous beforehand and I always feel relieved when it’s over and I have no mishaps. I never know how the talk will go and what I talk about until I do it as I like to change it about a bit.

The microphone was a bit hit and miss as usual!! 😂 😂 I have yet to give a talk where the microphone works really well. But it’s all experience!!! 😜

I just advise people that they can live well with dementia. Never to give up, Adapt and always retain a sense of humour. I don’t suffer with dementia, I live with it. It’s a matter of perception.

I recited one of my poems and sold a few of my books. I am in awe that people want to read and buy my books, and that people want me to sign them which I find strange but nice as well.

A Sense of Humour Helps

I love seeing my friends socially but it makes me tired talking and trying to keep up what is being said. We always forget that our brain is used for everything and people don’t really understand that. Every day last week I caught up with friends who I haven’t seen for ages so thats a lot of chatter. By Saturday, I was starting to feel tired.

I went out with Annie for our weekly walk. I never think walking is tiring but it really is. I push myself to do this exercise because I feel its really important but it was hard work on Saturday. We walked the hills of Hawkinge which is a feat in itself, up and down. Sometimes when I walk its like walking through treacle, my legs don’t want to and I again push myself.

We climbed to the top of Sugar Loaf Hill, where at Easter, three crosses are carried by three men and placed there every year, then taken down a week later. And then we went down the steep slope to the bottom. I am always in awe of Annie who is so confident and there is me gingerly going down as scared of falling. She had the good idea of walking in a zig zag way downwards which worked.

We got to the bottom of the hill and there were lots of trees and branches that had been cut and were starting to grow in different ways. Nature at its best. Blossom was seen starting to grow on some of the trees, an early sign of Spring.

As we walked towards the next hill we saw a spring which the pilgrims used to drink from in years gone by. The water was so clear, however it was like a quagmire on the embankments and we looked at each other cause we had to cross it somehow. So we went to the shortest point and there was a log across this stream. Annie went first and it was fine. Now me and my balance has never been much cop. In my minds eye, I am like a ballerina!!! But in reality I am a klutz !!! Lol!!!! 😂 😂 😂

I start off at the beginning and can’t do it and I thought sod it, I’ll go into the mud and walk through it. I got stuck into the mud, fell forward, it was like a comedy sketch, both Annie and I were both laughing cause we didn’t know how I was going to get out of it. It was like a mud bath without the luxury !!!! Lol 😂😂😂

I moved one of my feet with great trouble and then the other and then lost my boot in the quagmire and stood on the edge of the other side with mud down one leg and a muddy sock on the other. Both of us were looking at this boot wondering how to get it out. Luckily its wasn’t like quicksand so it wasn’t disappearing but it was stuck solid as Annie tried to no avail to get it out. In the end, she used my walking pole to dislodge it and finally I got my boot covered inside and out with mud.

Nothing I could do about it. I had to put it on and carry on walking. The funny thing was that we saw a wooden walkway a little way along over the stream that we didn’t know was there!!!! Lol 😂😂😂I always carry water so we rinsed our hands. And laughed. We walked up Castle hill so called before there used to be a Norman castle in the old days perched on top. and then we walked back to my house via the crematorium. We walked 5 and a half miles so did good. Of course I got funny looks from other walkers cause of being covered in mud. At least our walks are not boring.

In the evening, I had friends round for a takeaway and catch up but they didn’t stay long as felt out of it some of the time. The voices were echo y in my head as i couldn’t quite grasp or make sense of what they were doing or saying sometimes.

The photos of my shoe, the spring and the alternate pathway are borrowed from Annie, but the photo of the early blossom and Sugar Loaf Hill are mine

The Three P’s – Positivity, Perseverance and Patience

We are all capable of doing great things. Its just a matter of mind set. I understand or know that for some people its really hard to look beyond what is wrong with them and see the positive over the negative. We are all different, unique beings.

I came across this quote today and thought it was apt in this place and time. It’s by Francis of Assisi

“Start by doing what is necessary; then do what is possible, and suddenly you are doing the impossible”

So for me for example, I did what I had to do when I first got my diagnosis, retired from my job, stopped driving and looked into how I could fill my time, and worked on old skills that were hard to do. Like computer skills, cooking skills etc.

I joined groups, started to write in a way to make my brain work, in a way to stop me forgetting words, and I still hand write after a fashion so to keep the skill going.

I join groups to speak and meet others, my speech and thought processes work hand in hand and sometimes I forget what words I need to say but I work through it. Perseverance for me is the key, no matter what.

Now I have written a book which for me I did the impossible, and used my own photos in the mix. Double Whammy!! Might not be brilliant in some peoples eyes, but it doesn’t matter as words are just used to help my brain. And if it encourages others to keep going, so be it.

Remember we are all capable ~ Positivity, Perseverance and Patience (lots of that) ♥

Be your Own Fighter

Today which is Thursday, I went to CST in the morning and we did quizzes. You always think that you don’t know anything, but we know a lot more and it always surprises me.

Like What is the largest ocean? What is the capital of Greece? We remembered all the answers to those sort of questions. Amazing what our brain can retain and keep. I just wish I could retain others things apart from general knowledge.

Then this afternoon we went to a Dementia Action Alliance meeting in Hythe, at Age UK. It was mostly talk about getting businesses to become dementia friendly which is really important. I like going to these meetings as getting used to seeing people I know and meeting new people. And although they are all professionals, they listen to what we have to say. And listen to our point of view what is important and means a lot.

Out of the blue I was asked to do a book signing at a dementia Awareness day on 20th May in Hythe, I feel a bit strange that people want to read my book and get to know me, but at the same time I also feel excited and pleased as well. It’s a point that I want to get across that we are all special in our own way.

Life is hard sometimes, but we all have to find our own niche in a way to survive. This is my way of fighting against the alien in my brain 💖

Never give up on dreams

i-am-still-me-bookWell, my book has come out today on Amazon and Authorhouse. I feel so proud of myself. I never, in a millions years, thought I would write a book of poems when I first got diagnosed with dementia. It’s a book of poetry some pertaining to my dementia, but most about life in general or nature. There are about 20 photos in the book as well. I chose the cover because I love nature and trees, and the trees losing their leaves remind me of my brain. I want to tell people never to give up, on anything 💖

Don’t Give Up

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We only have one life, and our life is short compared to the universe, so we have to make the best of it. I strive to do the best I can by always thinking on the positive over the negative no matter what.

When you have a condition, you have to learn to adapt and believe that you can get through it. Thought is a powerful tool, and if you believe it enough , you will. I believe that I will have at least 20 – 30 years ahead of me before my dementia takes hold of me, and I firmly believe that.

But you must NEVER GIVE UP on your life. The minute you do, then the condition takes over and you will lose. Why should that win over your life which is so precious.

When I first had trouble with writing, and remembering and finally got my diagnosis, I couldn’t use a computer very well. I used to in the old days but over time my coordination wasn’t very good. I couldn’t use the keyboard and keep looking at the screen, all the words kept jumbling up. But because I started to write poetry and it was easier to put it on the computer than handwriting it, I persevered and now can use a keyboard as fast as I used to be able to. You just need to push yourself and believe you can do it.

I don’t want to give up on skills that I used to have so I make myself do things, no matter how hard it is sometimes.

I have started doing on line courses which are free because I enjoy learning new stuff. Always did when I was a nurse and I know i can’t retain information now and I can’t remember a lot of what is said to me but at the time I like to learn something new and who knows that it might help my brain adapt, and I might remember bits of it. I don’t believe in the word can’t.

Sometimes my speech is affected especially when I get tired, its like I have no coordination over my tongue and I can’t always remember the words but I like to persevere to get the words out if I can. I hear of people who give up talking because its exhausting trying to speak. I don’t want to do that so I will try as much as I can. My friends always ask me if I want them to help say the word.

Last year I attempted to walk 44km for charity. I managed to walk 26 km in the end as I was poorly on the day but it was still an achievement for me.

We all need to FIGHT FOR WHAT WE BELIEVE IN.

And we all have bad days. Everyone does. So if you do something that isn’t quite right, or you can’t remember something, or its just a bad day. Don’t give up at the first hurdle and think your condition is getting worse, because there is always tomorrow.

Power

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POWER

The mind is a powerful tool
People have the power
But sometimes they are a fool
Watching time by the hour

Will it or won’t it?
I can hear their minds ticking
Then people want to quit
Cause it beats sticking

To whatever it is they are fighting
But in life, you have to remain positive
As life can be exciting
Even if your mind is a little less cognitive

So what if you do have dementia
Don’t let it stop you from living
You may have started to have dyslexia
But life is always about giving

We all have a power
It’s just how we use it
We can be beautiful like a flower
Even if our brain isn’t fit

It has to be believed
That we can fight anything
That life can be achieved
You can even go snorkeling

Just believe and have faith
That joy can be seen
Some people show their wraith
Whilst others make a scene

But it’s because they don’t understand
That we all have a choice
That life can be grand
And we all have a voice

Copywrite Tracey Shorthouse 2016

Lessons to be Learnt

Years ago one of my favourite spiritual writers was Paulo Coelho. He writes stories, but there are always lessons within these stories. His books are easy to read, as easy on the eye. I have recently bought one of his books in the hopes that I can read it.

There was a paragraph in it which I thought I would share with you.

” In life, each person can take one of two attitudes: to build or to plant. The builders may take years over their tasks, but one day, they finish what they are doing. Then they find that they are hemmed in by their own walls. Life loses it’s meaning when the building stops.

Then there are those who plant. They endure storms and all the vicissitudes of the seasons, and they rarely rest. But, unlike a building, a garden never stops growing. And while it request the gardener’s constant attention, it also allows life for the
gardener to be a great adventure. ” Paulo Coelho 2008

I always like to think of my life as being a great adventure, never stopping, just lots of nooks and crannies.

I like reading Aesop Fables for this reason as well. They are beautiful stories and have lessons to be learnt inside. Of course when you are a child, you are not aware of them but as an adult they are very much apparent.

And our proverbs which I had forgotten until recently. I go to a CST (Cognitive Stimulation Therapy) course and they were talking about them there. Those that were given to us gave me food for thought.