Experiencing Dementia

Experiencing Dementia.

The Torquay

Shuffle

Walking has never been a problem for me, we love going for walks and always go as far as my heart failure will allow me, but lately I have noticed a problem, and more worryingly, so have others. As you know my Spatial awareness is not what it was and I had a fall a couple of weeks ago due to missing a step, but unfortunately this is different.

I noticed something was wrong as we walked through the hallway of where we live. As I looked down, it looked as if the carpet was going faster than my legs and I found myself almost jogging along, It was Elaine, as always, who caught my arm and asked me to slow down. As we stepped outside, again, I had that awful feeling of not being too sure where I was but that passed quite quickly and we set off, well, at least tried too!!

The only way I can describe it is it was like having two 12inch blocks of wood on the bottom of my shoes, I was all over the place, the floor became like an escalator and my feet felt as if they didn’t belong to me. Quite what it looked like to any passersby Goodness knows. The more I tried to resonate what was going on the more I panicked and I was convinced the floor was going to open up and swallow me. So there I stood, bolt upright and rigid, wondering where the Hec I go from here. No amount of coaxing from my “Angel” seemed to be working. Eventually step by step we started up again but when you hear the words baby steps, it takes on a very real meaning. How many times have I said?

“Nobody tells you this will happen!!”

For the rest of the walk, a very short one I may add, I dragged my feet there and back, it was as if my mind needed to know the ground was under my feet and needed to feel that they were in contact at all times. What a rotten disease this is!!! I stand in front of hundreds of people every year and try to get the message across that Dementia is not just ALL about memory!! If most people had seen me stumbling, shuffling and holding on to my “Angel” for dear life at all times, you can only guess what they thought!! The last thing on their minds would be “Oh! I wonder if Dementia is causing this???  More worryingly this seems to be another step down that rocky road of Lewy Body`s because as you know its closely linked with Parkinson’s and the shuffling is apparently quite common, though not in my case, this is a first for me.

 

I must admit I am starting to think about slowing up a little but do you mind if I share my fears with you my wonderful friends?

I am totally convinced that if I slow up, I will never get that drive and commitment back, that the Lewy Body`s will take over quicker and my battle will be over very soon. I see this as a clear and present danger! A fight every day of my life against this awful disease, I struggle to dress, I struggle to eat properly on some really bad days, I am always clean and tidy and yet I feel so hopeless at times as I watch Elaine putting my shoes on or fastening my buttons. If I give up just a little of what I am doing or slow down a little, does this mean the Lewy Body`s army is marching on against me ?? How many others in my shoes feel like this but have never said?

And yet I must admit sometimes at feeling so very overwhelmed that I just wished I also had that magic wand, waved it and all our troubles would just fade away. Alas this is not the case, so what should I do? As of this moment I have no answer but I hope that this quick glimpse into my life and my fears will help others and maybe one day, I and others will not have to make the decision to slow down or not.

Always fighting, sometimes winning, sometimes not,

Norrms and family xxxxxxxxxxxx

 

 

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