Oh Dear Sleep !
Oh dear sleep, please come my way,
Pass over me and end my day,
Tormented by my visions past,
Help me slumber, your shadow cast,
Its Lewy Body`s that I fight,
Every second with all my might,
Eyes that see, not always true,
Ears that hear songs so blue,
Laying my head upon my pillow,
O come dear sleep, like a whispering willow,
Take me to a place of hope,
So each day I can cope,
Refresh my mind for tomorrow’s day,
To face whatever comes my way
Best wishes, Norrms and family xxxxxxxx
Dementia friendly communities in Torbay
Even though we have to fundamentally change the way people think and the culture surrounding Dementia it doesn’t have to be to complicated or bogged down with bureaucracy and risk assessment’s . We need to put people on the ground who will approach these businesses and explain to them how simple it really is, this is our approach.
We enter every business armed with three documents only. One is the LOGO of the Torbay Dementia Action Alliance which we have had designed for free. The other`s are two documents, A Guide To Dementia By the Alz soc, , and What Is Dementia, written by myself. . We explain who we are and explain that all we want them to do is to make sure that them and all their staff read the documents, understand them and if there are any questions there are phone numbers to contact for any queries (Alzheimer’s society Hot line and local Alz soc office) we explain that we will call back in two to three weeks, depending on the size of the business and once awareness has been raised amongst all staff they will get a badge to display in their window which states they are “Dementia Aware”
The words “Dementia Aware” is very important as we are certainly not a training consultancy firm nor profess to be so. We are not in the business of Training staff up to level 2,3or 4 in NVQ dementia, that is not their job, but when we explain that i was myself diagnosed with Dementia aged 50 and its not just an age related disease but a Degenerative disease of the brain and could quite possibly happen to anyone at any time, they are always taken aback.
Our aim in Torbay and hopefully UK wide is to create Dementia friendly communities which, in turn, will massively improve all aspects of people lives who are touched by this awful disease. More understating creates compassion and also reduces stigma. We did it thirty years ago with Cancer and more lately with the likes of HIV and heart problems, so there is no reason why we cannot do the same with dementia. We are involving the likes of Banks, supermarkets, local shops,cafes, schools, bus companies, colleges, coach companies, the holiday industry, Hotels, of which we have many here,Estate agencies, hairdressers, barber shops, Bingo halls, social clubs, pubs, Main post office, Cinema`s, theatres and everywhere where people visit during their everyday lives. This can only be done by creating alliances and volunteers willing to do this, but the biggest advantage we will ever have is to include those with early onset Dementia like myself. We can shape the future for people to come and provide better service and hopefully eventually rid this disease of the awful stigma that is attached to it.
Here in Torquay (in itself a huge place and not to be mistaken with TORBAY as this consists of Torquay, Paignton and Brixham) ) we are already on our way in creating the UK`s first ever Dementia Friendly small community as we have support from over 70% of buisnessss in the St Marychurch area of Torquay and 40% of Buisiness of the Babbacombe area of Torquay, we are hoping to completle the 100% in both areas in the coming months !! The beauty of this is there is no real time limit, but the sooner the better as far as we are concerned and we are hoping to be able a Dementia friendly commiunity very soon.
Please let me know your thoughts on this as i would appreciate all feedback
Lots of love, Norrms and family
Hiya, as you know Elaine and myself are working alongside the Dept of health and have been campaigning for four years now to have an information leaflet speacially designed to give to those who are newly diagnosed with Dementia and their loved ones and carers. Please click on the link to see the proto type we have come up with. It has all the relevant info on it and more imprtantly (In my eyes) a reminder to make a follow up appointment, as shortly after the news has sank in, so many questions appear in your head (I KNOW) this will hopefully allay the feeling of being left out on your own. As always we need the go ahead for funding so please wish us luck and cross everything !!LOL All our love, Norrms and family xxxxxxxxx
Changing times, all around,
Walking, stumbling falling down,
Looking Skyward from the ground,
These are Changing times,
Legs like wood, feet like lead,
Horrific images inside my head,
Wishing Lewy Body’s dead,
These are changing times,
Eyes that see but cannot cry,
Depression medicine keep`s them dry,
Frustration forever running high,
These are changing times,
Yet deep inside there is a light,
A light that shines oh so bright,
Telling me to ALWAYS FIGHT!!!!
These are changing times
The change will come one day you`ll see,
Of Lewy body`s we will be free,
And all is well for you and me,
THESE ARE CHANGING TIMES!!
Keep the faith my friends, Love, Norrms and family xxxxxxxx
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