Who Am I

This is the post excerpt.

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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.

 

Author: tracey28

I was diagnosed with early onset of Alzheimer's Disease and Posterior Cortical Atrophy in December 2015. I cope with having this by being optimistic and positive, and by being vocal about dementia. Its not a case of it being shoved under the carpet or not being spoke about like it used to. How else can we learn if not open about it. I do a variety of things to get out there and keep my brain active which is the most important thing. This is what I am going to share with you, my poems, positivity, etc. It doesn't have to be doom and gloom when you have a long term condition.

2 thoughts on “Who Am I”

  1. Hi Tracey,

    Thank you for taking the time to write about your condition. I too have early onset and had started writing about my own experiences mostly for my own records but a few days ago I decided to start writing about it on a blog. That was when I found your page.

    I turn 57 this year and have known my brain was changing for at least a couple of years now.

    It is somehow comforting to read your posts as I understand much of what you write about although I am yet to go through the panic of being lost for the first time – I have dreamed about it and that was scary enough!

    People who don’t suffer from some form of dementia really don’t have a clue about the frustration of living with it. More than anything else I get angry with myself because I now can’t do things I know I could once do easily. I know I should just accept what is happening but I still mentally hiss at myself like an angry cat 🙂

    I noted that in one of your posts you said you hoped that your writing could help others and I thought I would let you know that it has helped me.

    Kind regards,

    Marc.

    Liked by 2 people

    1. Hi Marc, I am glad that what I write helps others. I also write a blog on Facebook called I’m Still Me. I started this one cause at one of my talks it was noted a lot of people still are not on Facebook so I wanted to get out to others.

      It is frustrating when you have dementia and as you say only those who have it, will understand properly. It is a case of adapting and trying to remain positive. I tend to push myself a lot more than I should and my psychologists are always telling me to rest more. But if a talk comes up that I want to do, or a conference and they happen to be in the same week then I will do them. Like this week. But next week is quieter. So swings and roundabouts.

      I have read some of your posts and I can empathise as my words get gibberish as well and I have to re read numerous times before posting. I used to be good at spelling and now I feel like I’m a child all over again, what is the difference between witch and which, anyway and anywhere etc. Those are my bug bears. Thank goodness for spell check on the computer when I write my poems.

      Remember never give up and try and retain your sense of humour cause that helps as well

      Kind Regards

      Tracey

      Like

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