What the hell is happening to my brain?

rambling brainThis may not be such a positive blog today! I have a private blog called ‘What the hell is happening to my brain?’, which many of you know is also the first part of the title of my book soon to be released, and I may have even posted at least one blog with that title before today.

It would actually be good to have a clearer picture of what is happening to my brain, but even my neurologist has  admitted he doesn’t really know that much about the brain, not specifically mine, but the brain in general!

As far as my neurological conditions, dementia being just one of them, it is sometimes challenging to manage them all, even with the support of good specialists and a very good Neuro Physiotherapist.

Anyway, lately, the scrambling inside my brain has increased… and I am sure two paracetamol once or twice a day has not done it. Words are harder to find, and it is taking much more effort to speak well. I’ve also noticed significant changes with my memory, both short term and long term, as has  my BUB.

That is not to say I am not managing; I am, but the paddling is significantly harder. My dear husband has certainly noticed the changes, as when we are home and more relaxed, I don’t fight to function ‘perfectly’. My loss of dignity, which feels at risk of being thwarted publicly much more lately, is not a problem at home, because we are so comfortable with each other. it is a relief to relax, but also more difficult to live inside the denial bubble when I do that!

It is indeed, a strange experience, feeling like I a losing who I once was, losing thee knowledge and memories I had stored away, or at least my ability to access them. And even though that is happening, I am still all here, if you know what I mean. I am not an empty shell, or fading away, even though sometimes it does feel like that; I am simply changing, in ways that others are not.

So, as I do not have a genetic type of dementia, as with most people diagnosed with a dementia, we do not know 100% for sure if it is a dementia, or whether the cognitive disAbilities have been caused by something else, but I am changing, and I have lost access to a lot of my knowledge and memories, and my functioning has changed.

The only way to know for sure I have dementia is an autopsy, and for some strange reason, I am not quite ready for that yet!

23 thoughts on “What the hell is happening to my brain?

  1. Yes, we are all changing and evolving in different ways all the time.

    A couple of months ago I went for a series of tests with a neurologist, and emerged with flying colors on the other side. However, all of these things are relative.

    I find myself more and more frequently using the Internet to check the spelling of words I never needed to verify before. As I’m writing, a red line appears under something, and I know it doesn’t look right but somehow I can’t find the way it should look. I presume this is the start…

    But I’m not afraid because of people like my mom and you Kate, who are helping the rest of us know how to navigate uncharted territory.

    You are an inspiration to thousands and through those thousands to millions beyond.

    Thank you.

    • Thanks Susan… and yes, with or without disease, we are all, always changing. This is also what I find such an odd part about other peoples reactions to the changes brought on by dementia, as if they make us non human, rather than just changed… oh well, onwards and upwards though the fog! xox

  2. Since we know so little about the brain, this may be a temporary setback. Perhaps your creative brain is trying to send you a message to slow down! After all, there must be limits to multi-tasking and we all wonder how the hell does Kate do. what she does – and do it so brilliantly and to such good effect?

    Time to take care of your brain. Try mindfulness: it’s more than therapy, it’s a way of living.

    • Thanks dear Peter… I use Mindfulness, and do more than daily things like meditation, and a few others things. It seems though, if I slow down for too long, the symptoms get worse and more noticeable. If you honk of the analogy of the Swan on the lake, with its legs paddling below to stay afloat – which is how most people with dementia or other chronic illnesses or pain manage, think about the Swan, and what happens to it if it stopped paddling. Of course, it sinks, and this happens to me, and is why I paddle so hard and so often. For now, it is working, but also, it is important in my ‘story’ to be honest enough to share the good, the bad, and occasionally, the downright ugly. I hope you are feeling well again now too?

  3. Dear Kate – I love what you say I don’t love what is happening to your brain. I was with my mother today and saw different things in her (since yesterday) her voice and dropped and her words were scrambled — but tomorrow it may be different again. And often better. I hope tomorrow will be better for you

    • Thanks Julia… and as you say, every day, and of ten even different parts of the same day, things are different… I will continue to be positive, and work hard to keep functioning in spite of it! xx

  4. Thank Goodness Kate! Stick around for a long time please, no autopsies! Wish there was something I could do. I’ll keep sending stuff about it in hopes something will work. The last bit of info I sent you sounded very promising, I just can’t remember what it was to remind you 😦 Oh heavens, I better not lose my mind as well. For me it is the Lyme attacking my brain. So much fun…Hang in there and keep trying everything. Sooner or later something has got to work…Hugs my friend….VK ❤

    • I most certainly will dear VK… it is I feel, no matter how well I appear to be doing, important to share some of the uglier parts of living with a dementia, as it is not easy, and it is quite often not like having a birthday party, that is for sure!! xox

  5. Just want you to know that we are listening…and we are here for you. You are brave. You are helping so many of us by being you, by telling your story and I appreciate you. ♥

    • Thank you… some days, I feel it is important to share some of the less palatable parts of living with a dementia, as it is not easy, and it is not all rosy, that is for sure. I’m glad it helps.

      • I think it helps us all to understand every part of living with dementia so that as caregivers, we can be better at caregiving and hopefully make it easier. ♥

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