My companion is beginning to bite

So here’s one about living with my brain disease, aka dementia.

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I’ve noticed changes recently. Not huge, but noticeable.

And I’ve also caught myself thinking that before too long I may be more significantly affected.

Till now I have just taken it on the chin. It’s just another disease or illness to add to my growing list. I’ve got on with living and doing what I do, not hugely affected by IT. 

IT has been my companion rather than my enemy. IT has brought me new friends and fresh ways of thinking about life. While I do have a disability I have not felt disabled.

But things are changing. 

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My balance is deteriorating. When I close my eyes standing I quickly wobble. Whatever I do if I don’t touch something to give me a reference point I wobble and get close to falling. Might be my elbow against the shower unit. That’s enough. 

I am more clumsy. This weekend we had some people staying. I knocked over a glass of wine by not lifting my hand enough away from it, and I often come very close to knocking cups and jugs on the floor. I’m just less good at judging distances and making quick calculations to avoid things.

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Uneven floors and patterned carpets are suddenly a real problem for my balance. I cannot calculate quickly enough to make adjustments before I put my next foot down.

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Carpet patterns which I used to cope with leave my eyes swimming and fuzzed. Patches of shade on floors that I don’t know well can also cause just a stumble as I walk. 

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My articulate use of language is still intact, it’s my physical movement that is most affected.

But my hearing or decoding of sounds is worse. I am forever having to ask for a repeat, often several times. And I’ve booked myself a hearing re-test so I can get my hearing aids adjusted if necessary.

I was using a shower over a bath in a premier inn last week. Its the first time I really felt unsafe. No grab handle. Narrow bath. Just a curtain between me and the floor outside. I am going to ask for a disability friendly room in future, with a walk in shower.

So the reality of living with dementia is starting to require a few changes. A few alterations. Thinking more about what I do as I do it. Less autopilot. More manual flying.

My companion is beginning to bite.

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2 thoughts on “My companion is beginning to bite

  1. You are doing remarkably well considering the huge amount of work you are doing. you have done untold work in so many ways ‘re Alzheimers/Dementia all over the country already, and although you are making such a difference in so many groups/meetings ect. You must take time out to charge your batteries every now and again my dear friend. It worries me when you actually admit you are struggling with balance and different things. I could help with some things George if you would allow me to. Have a think if there is anything I can do to help you.

    From lizzie

    Liked by 2 people

  2. Great blog post. Thanks George. As I just said in a tweet just now, your last paragraph sounds like mindfulness practice, which is actually very positive. Being more mindful of your movements, where you are and what you are doing helps to be more present, and therefore, get more out of living. We spend most of our lives ruminating about the past and worrying about the future we forget to enjoy the present. More time in the present moment, and less time in autopilot, is not only necessary as you make your adjustments, with more awareness may be a more satisfactory way of squeezing the most out of life. Just a thought. You can do mindfulness courses locally and there are even some available online free of charge.

    Like

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