Lewy Bodys, Nobody knows

Discussion in 'I have dementia' started by Norrms, Nov 3, 2019.

  1. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,319
    Male
    Torquay Devon
    Nobody knows, KNOW BODY KNOWS !!!

    During the night last night,, i sat up in my bed, i looked down and saw my wife who was sleeping peacefully besides me, apparently unaware that the computer screen was flashing on and off. I sat upright in bed and rubbed my eyes as it flashed and flashed, sometimes quickly, sometimes slowly, then the screen came on a brilliant white.

    After a few seconds i was just about to get up to see what was going on when all sorts of jumbled up letters began appearing across the screen, jetting backwards and forwards, not making any sense , not making any word's, just random letters zig zagging up and down. Then the zig zagging stopped and a sentence appeared, i strained my eyes to see what it said and the sentence just grew bigger and bigger, then it started to roll down like an old fashioned music box on top of an old piano that used to play music by itself, i couldnt believe my wife hadn't even moved as she is such a light sleeper.

    Then, just as i made a move to get out of bed , i felt it. It was only light at first but then felt like something was grabbing me .It felt so small, almost like a baby's hands, then another , then another, until all i could feel were tiny hands clawing at the small of my back and sides, nipping me, scratching me and even more terrifying trying to pull me into the mattress below!! My own hands went around the back of me as i tried to swat the hands away, i looked at the computer screen which was going crazy now, and all sorts of noises were coming from it. I SCREAMED , and SCREAMED again, and then? As quickly as it had happened, it stropped, and Elaine was by my side holding me, reassuring me and telling me it was all a hallucination. I could do nothing but shake and weep for the next ten minutes saying over and over again "Nobody Knows, NO BODY KNOWS !!!!!!, Whilst Elaine held me.

    i have been through this so many times of late, once even in the afternoon a couple of weeks ago whilst out and about and it never gets any easier, some i re-member, some i dont, this one has stayed with me all day and even as i type i can almost feel the hands around my waist and it makes me shudder.

    Dementia is a Curse

    LEWY BODY`S is a Curse

    And sometimes, so is life,

    But we have to remember these are the cards i have been dealt. So many have gone before me have lost their life to this GOD AWFUL Disease and who have not been diagnosed as half as long as me. I HAVE To believe its all about the quality of life we HAVE at the moment, take it day by day, hour by hour sometimes, and be grateful for each moment, because as sure as eggs are eggs (Unless they find a cure) the good times will not always be there as i sink below what really is the quagmire of dementia.



    Norrms Diagnosed with Lewy Bodys Type dementia
     
  2. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    360
    Female
    South East
    I am sorry to hear about what you go through :(. You have such a positive outlook and your experiences really help me to get inside the head of my PWD . Thank you @Norrms you are so very brave .
     
  3. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,319
    Male
    Torquay Devon
    Thank you for your kind words Woohoo xxxxxxxx
     
  4. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    I’m so sorry that you are having bad hallucinations it’s a terrifying experience, that for you is a reality.

    I can only recommend having a nightly routine that doesn’t involve a screen for a couple of hours before you go to bed. The blue light stimulation might be a trigger point, maybe it’s worth a try for a few weeks.

    Mums hallucinations when low grade infection & very slight temperature raise increases dramatically. Mums on memantine & an anti depressant. She still gets hallucinations but not as bad as they used to be.

    Do you have pins & needles at all? Restless leg syndrome- as these can lead to an hallucinations while your mind is trying to interpret your bodies signals.

    Having a walk after tea time even if it’s just 100 yards outside is a good relaxation routine but not always possible. It aides digestion & the brain produces good chemicals with exercise.

    I hope that you might find something in this useful; but I do sympathise as these terrors are very real & don’t always fade.

    classic fm quietly on in the background at night might help. it can be on very low, or a listening book. Don’t laugh but a childhood favourite is like an old comfort blanket.
    Mines Harry Potter as I read them to my children & I find Stephen Fry’s voice like silky chocolate!

    a banana before bed is the old wives tail for night terrors as my granny called them- dementia runs in the family ( I’m adopted!)
    But I get mum to eat more & maybe it does help.

    you & your lovely wife take care
    A book at bedtime , can’t beat the paper type not a kindle, I highly recommend “the salt path.” A good inspirational read

    Wishing you sweet restful dreams.
    x
     
  5. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,319
    Male
    Torquay Devon
    Thank you x
     
  6. Jenni_B

    Jenni_B Registered User

    Aug 24, 2019
    104
    Female
    France
    This is just awful for you. I can't imagine the terror of such hallucinations, and it seems doubly cruel that you remember some of them. I am so sorry.
     
  7. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,319
    Male
    Torquay Devon
    Thank you, just the cards we have been dealt xxxx
     
  8. Calli

    Calli New member

    Oct 31, 2019
    3
    I am going to go off <normal> for a bit only because I have had so many OBEs that a few words from your experience triggered a question for me. I wonder if all...all being the question here....your ‘hallucinations’ are really that or possibly that the chemical balances have allowed doorways normally closed to be opened ...and some are bridges to other dimensions.

    through my own experiences I have learnt that things off this world are organised but the key in where you go, what you see and experience is which <doorway> is used.

    i mean it might be that some of your experienced are just not hallucinations entirely and given you have stepped into a <stage> where energy is leaking and allowing multiple alter realities to co-exist....perhaps there are possibilities to learn to control.

    I know In OBEs some of what you say is reported. To overcome we have to use our intent to command.
    The first step is to realise at what point you alter your reality and at what point do you step into alternates. And then understand that the mind governs entirely and can be used to change what you see and experience. And you can use your intent and mind to immediately leave any <place> instantly as well.

    i know I may sound screwballed...but I have a larger view of life anyway.....
     
  9. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    Hope the hallucinations have eased
    X
     

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