Never Give Up

My friend Annie is my walking buddy. Although I do walk alone, just recently its nicer to have a partner. So we go for weekly walks if time allows. We both like woods and fields and round here we are surrounded so lucky.

We went for a walk a couple of weeks ago and saw all these wonderful trees. Although it was quite icy to begin with, it soon melted. We walked for 5 and a half miles, so pleased. It was nice to get fresh air in my lungs. I do use a walking pole as can get a little unsteady on my pins at times.

Something happened on that walk that bemused me and I’m sure when I share it, you will think, what?!?! Lol

We went across this field and came to a stile which we had to climb over. But I couldn’t remember how to do it. I got one leg over, but i couldn’t remember what to do with the other leg!!!

It’s ridiculous, isn’t it? I looked at Annie and told her that I didn’t know how to go over. So in the end, I just sat on the fence as if i was on a horse, and put the leg straight in front off me and put it over that way with the other leg. I remember that happening a couple of years ago when I was out with my nan and she had to patiently tell me how to get over and where to put my feet etc.

I find the brain complex when I want to do things that I’ve done in the past, but can’t figure out how to. It’s frustrating to be honest. There are always ways to do something, it might not be the right way what others may do, but i dont care now. If it works for me in a haphazard way, so be it.

Sometimes i hear, “” that’s a strange way of doing things” or “well i wouldn’t do it that way” but our brain works in different ways, especially when we have dementia or another condition. We adapt the best way we can and work with what we have.

Mind over Matter

It’s mind over matter ………… You can do it

How often have we heard that in our lifetime, from our parents, grandparents, friends etc.

We have a fear or are not sure about something, and that fear escalates in our head until its threefold and you can’t get away from it.

But its mind over matter……

We are all capable of achieving so much in our lives if only some of us didn’t have that small inkling of fear trickling away in our heads and hearts.

When I first got my diagnosis of dementia, my consultant told me that I was now classed as vulnerable because I don’t remember. I felt scared and frightened which when I look back is ridiculous as I have always been independent and when I took stock of what was or is my life. I am still independent. But back then, because vulnerability is a negative statement and I got a bit scared of going out on my own, scared of opening the door to someone in case they knew I had dementia and could take advantage.

I have only been a victim once and that is when I was in an abusive relationship a long time ago, then I made a stand and got rid of him and vowed I would never be a victim again.

Being scared of someone is one thing, being scared of something is another. But at the end of it, its all under the same umbrella of being a victim of your own fear.

The first time I used the bus I was terrified, terrified of missing my stop, sat near the bell and as time went on it became easier. I have always been aware for what or who is about, so some things don’t change. I still sit near the bell because it is easier for me knowing that I can stop the bus when I want to.

It’s quite easy to become a hermit, not see anyone for days. Yes, I have friends but they all have their own lives, as I do. I make myself go out visit friends, go to groups, go walking.

The only time I used to feel vulnerable and that is when I get tired, my speech gets slurred and my gait isn’t very good. But I carry a collapsible walking stick in my handbag and I take that out if needed. And I don’t go out if I am extra tired because my brain and thought processes get a bit sluggish and I don’t feel safe.
We are in charge of our own lives and we need to make a stand. The dementia shouldn’t be making us a victim.

Have a good day ♥

Don’t be a hermit

It’s very easy to become a hermit when you have a long term condition such as dementia but its not healthy as the brain needs stimulation. For me I have to get a happy medium and pace myself as I get tired very quickly but I also like to do things.

I can’t cope with crowds as I am not able to distinguish between the voices, its like a constant rabble in the environment. So I  very rarely go out in the evening anymore with friends as they always end up going to a noisy pub, then I feel isolated as I can’t tell what they are supposed to be saying and then I find myself going into my own little world wishing I was at home. Plus my speech and gait get affected when I get tired and the evening is usually the worse for me as well.

So I try and see friends in the day, or go out in the day which suits me better. I go to a variety of different groups so I can mix, I suppose that is one of the reasons I miss working seeing people. I go to a weekly writing group which is good as it encourages me to hand write stories and such and keeps that skill going. I go to a group called Rosies Moments and its situated at the sports centre and we do a variety of physical and mental activities and I enjoy that. I also go to a group called The SunShiners which consists of a mix of psychologists and people who have dementia and we try and raise positivity about dementia cause most of us are quite young.

I go and give talks to post diagnostic groups, these are people who have just been diagnosed with dementia and tell them not to give up. And also I talk to the public to bring awareness that dementia does affect all ages not just the elderly.

I love to walk so have a walking buddy as sometimes I am not so safe on my own.

Just a matter of pushing and persevering always

Who Am I

This is the post excerpt.

My name is Tracey and when I was 45 I was diagnosed with early onset of Alzheimer’s Disease and Posterior Cortical Atrophy which is a different kind of dementia. I was fighting for nearly two years to get anyone to believe that there was anything wrong with me, so it was a relief to get a diagnosis.

I used to be a qualified nurse, I first worked on a busy ward in a hospital before going out into the community where I remained until I retired last May, 2016. I knew something was wrong, when I went to see a patient, before my fight of getting diagnosed, and wrote gobbledygook in his notes and didn’t realise and a colleague told me. And other things were starting to happen, like getting lost on the way to work, or losing the car.

Soon after my diagnosis, I stopped driving as it became too scary for me. The PCA part of my dementia tends to hide things, its affects my spacial awareness and perception of things. The buses where I live as very frequent so I am lucky.

The dementia’s give me a lot of problems which I work through and they don’t stop me from doing something I just adapt.

I don’t get hungry or thirsty, so I have breakfast with my tablets and I eat again about 18.00 0r 19.00 hours. I have an alarm in my kitchen which I set every hour and a half to remind me to drink. It’s in the kitchen because I then have to go and switch it off and then drink.

At times I have had to relearn old skills which I have lost, and I have done this by perseverance and not wanting to give up. Using the computer and cooking are two skills I have had to relearn.

I call the dementia my alien. The black entity that strives to get hold of my brain. Well its not getting it without a fight. I am worth so much more.

I write a blog because I forget so easily. So its my way of keeping a memory and hopefully it might helps others. I write poetry as well so that will be shared and also take lots of photos. Life is precious and we need to fight to keep in it. I try and keep positive because its heaps better than being negative. Plus I always see the dementia as being that negative energy and light always overpowers darkness.

By fighting each day, I will prevail.

I have four rules of thumb : –

  1. Adapt – I can’t always do the things I used to be able to, so I adapt
  2. Try and not stress about things I can’t control
  3. If a bad day occurs and we all have them, then there is always tomorrow
  4. Always, always try to keep a sense of humour, which is the most important.