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)

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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 💖