My Spatiel awareness Posted March 1, 2015 by Norrms

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wobbley legs

 

 

MY SPATIAL AWARENESS

 

Struggling to get into the car I knew there was something wrong, but just couldn’t work it out. Once in the car, apart from the usual confusion over where we were going I settled down a little bit, but with very restless legs as I recall.

 

Getting out of the car and walking up the pavement was a different matter. I almost slid out of the car as it was like my legs had a mind of their own. I stood there for a minute or two before I set off, holding onto Elaine (My Angel) for dear life. The only way I can explain this is that I wanted to go one way, and my legs had completely different ideas, and all without one drop of alcohol. If it wasn’t so B****Y frustrating it would be humorous. The more I concentrated the more frustrated I got. I fell over every pavement lip as I just didn’t see them and at one stage I seriously thought about just sitting down and shouting I GIVE UP!!!

 

You can only imagine the looks I got as I stumbled around at 11.45am in the morning in a busy village and if I had a £ for

everybody that “Tutted “I would now be booking a holiday abroad for a few days!!! As always, Elaine had hold of me like a grip of iron, asking me to stop now and again to try at least to get my bearings!! My head knew where I wanted to go but it just wasn’t letting my legs know!! It was such a relief to sit down for lunch and try to take stock of the last 20 mins but of course I couldn’t, as it really doesn’t make that much sense. Things didn’t get any better as I struggled to find my mouth with my food and I finished my jacket potato long after Elaine finished hers. I really don’t think many people understand what a debilitating disease this is.
I know my Lewy Bodys is getting worse and the commonalities with Parkinson’s are showing much more now, and its soul sapping!! If the hallucinations, memory loss and night terrors weren’t enough, the inability to walk straight, upstairs at times and falling over without reason is just another trait of this awful disease which pulls you down, and yet, very rarely spoke about. The overwhelming feeling of wanting to suddenly start running is so dangerous , and I am so ashamed to say when my father used to tell me this years ago I struggled to believe him, he also died because the dementia demon caught up with him.

 

The truth is my friend, this B****Y disease

 

“”SPOILS EVERYTHING!!
Your days, your nights, your family life, your life-force to keep you going, and your very existence by every means possible and some days its so hard to even get up in the morning!! But get up we do!! AND WHY ???????

 

Because we love life !! we embrace every seconds of it, for every bump in the road there is a mile of smooth driving, for every memory lost there is a new one made, even though we might not always remember them, we are making new memories every second of the day , far more than we are forgetting and because we have YOU by our sides, our family, our friends, our loved ones and our Carers, you BREATH the life force back into us every day, and without you we would have given up so long ago.

 

Please share this and please explain that this DA***ED Dementia is not just about memory loss, not just about Sundowning or Spatial awareness but about FIGHTING for our VERY EXISTENCE!! FIGHTING Together the most important fight of our LIFE!!!! And fighting it

 

“TOGETHER “>……………………

 

Much love, Norrms and family
Diagnosed 7 yrs ago aged just 50 and FIGHTING IT even harder now xxxxxxxxxx

13 Comments

  • Alison Ellison March 2, 2015 at 7:29 pm

    Norms your experience is invaluable. You give such an amazing descriptions of what you go through. I find them invaluable in my role of Admiral Nurse. Thank you.

    Reply

  • Karen March 6, 2015 at 3:06 pm

    I have MS and this winter is really effing with my walking capabilities. When I’m stumbling around if someone looks at me I just tell them “I’m not drunk, I have a MS” That’s if I’m in the mood to tell them anything. Otherwise I stare at them until they stop staring at me! Cognitive is the biggest thing for me. Memory short-term memory and then my husband talks about something from 10 years ago and I can’t remember and he just can’t believe that I can’t remember. I’m glad you have your angel to support you, both emotionally and literally 🙂

    Reply

  • marea March 7, 2015 at 10:45 am

    Hi Norman , you are our inspiration . Sorry you are having a rough time . We are all spreading the message . Our thoughts are with you . Take care. From your friend

    Marea

    Reply

  • Heather Pearson March 7, 2015 at 12:28 pm

    Norm Mac, thank you so much for ‘ telling it as it is’. You are a very brave and inspirational man .With admiration and BIG hugs Heather. (Heather Pearson, Daughter to Mum in year 19 of Early Onset Alzheimer’s Disease, Personal Facebook and Twitter News Supporting The Alzheimer’s Society)

    Reply

  • Pippa Kelly March 7, 2015 at 3:12 pm

    Norms, your words are powerful because they are brutally honest. Thank you for taking the time and tremendous effort to write this and post it. What you are doing to raise awareness of what dementia really is, and to eliminate stigma, is priceless and we all owe you a huge, huge debt. All the very best, Pippa xox

    Reply

    • Norrms March 7, 2015 at 3:44 pm

      Thank you so much my friend, its always good to know i have friends like you who also do SO much to help others, very best wishes, Norrms and family xxxxxxxxxxxxxx

      Reply

  • Zoe Harris March 7, 2015 at 7:14 pm

    Norrms, when you describe the new challenges you face every day it helps me make sense of some of what my husband Geoff went through, and I am very grateful to you for that, because he would not discuss it. What you are also demonstrating is that you can have these things go wrong and you are AWARE of them, something that few people understand. It is often assumed that people with dementia slip into some other world and are oblivious to what is happening to them, which of course is so not true!
    Keep up all the fabulous work you are doing. Best wishes, Zoe

    Reply

  • Julia Pitkin March 8, 2015 at 5:39 pm

    Norrms

    You have the gift of words and help me at least understand what the experience is like. Keep the blogs coming – Julia

    Reply

  • Julie Woolman March 18, 2015 at 8:40 pm

    I am sharing your blog with Student nurses at Plymouth university, I have worked in dementia care and understand a lot about it, but many don’t. I want to make them aware of how their future patients could be feeling. Thank you for sharing Norman. I continue to follow you on twitter and share your links. Take care.

    Reply

  • jan Mclean April 1, 2015 at 4:03 am

    Norrms you are such an inspration and I will continue to expand my work with with B C alzhiemer Sociey with renewed determation to make as many people I can Thank you Thank you

    Reply

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