“PLEASE DON`T” by Norrms McNamara

NormsWith permission granted, I am publishing some words by a gentleman in the UK who is living with younger onset dementia. Norrms McNamara is inspirational, and is one of the founders of the Purple Angel movement, educating whole communities about what it is like to live with a diagnosis of dementia, and how to help us. Globally many diagnosed with dementia are speaking out about what is best for us, and together we hope to break down the barriers of stigma, discrimination, ignorance, isolation, and to change the language about us from derogatory and offensive to respectful and centred on our humanity, rather than our deficits. Norrms words are powerful:

PLEASE DON`T
“Mock ” my Dementia, I was once like you, I once worked full time to keep and provide for my family. I had so many hopes and dreams, I STILL DO !! You don’t even know me, you have no idea what I have achieved in the past and what I hope to still achieve now, please don’t mock me just for being ill, I wouldn’t if roles were reversed, you don’t even know me, please don’t mock me just because I have dementia.

PLEASE DON`T
” Stare at me, let`s stare together at the changes that are now being made within the world of dementia, let us stare together in wonderment at how the stigma of this disease is being disassembled before our very eyes, brick by brick the wall of Stigma is coming down.

PLEASE DON`T
“Ignore Me” I have so much to say, I have early stages of dementia, have you even heard of that? Dementia doesn’t just suddenly “Happen” it creeps up on you slowly, in stages, but if you LISTEN to me I can help you recognise  the signs of early dementia so you can help your loved ones to carry on living a full life.

PLEASE DON`T 
“Tell THAT Joke” about dementia, I have heard them all, and they are not funny!! When you forget something, why do you think it’s funny to say “Ha ha, I must have dementia”   If you got a pain in the back or abdomen would you say “Ha ha, I think I may have Cancer ??? I think not!!! Dementia is a terminal disease with no cure at the moment, nothing much funny about that!!

PLEASE DONT
“Write us off ” We have so much to give, so much to do, so many more people to meet, to laugh with, to love, to cherish. So many more grandchildren to see born and to teach the ways of the world, I am not finished, in fact I am just beginning to see life for what it really is, short, but beautiful, and so can you,  if only you embrace it fully.

I am me, i am Norrms, Just a boy from Bolton who has been diagnosed with dementia, please see me and not my disease xxxxxxxxxxxxxxxxxxx

Norrms McNamara diagnosed at the age of just 50 yrs old nearly seven years ago now.

Please share, please copy, please print off and please put up in workplaces etc.

 

8 thoughts on ““PLEASE DON`T” by Norrms McNamara

  1. Hi Kate,

    Norrms and i are about to have an article published in a UK dementia journal…..about a booklet we made using Norms 8 community tips on how to approach, respond, be with a person with dementia in your community on your street. The booklet was based on Norms initial experience post diagnosis in a local shop in torbay his hometown.

    In Gloucestershire (about a 2 hour drive from Norrms) we have been able to fund the publication of 20,000 booklets with Norrms the expert advising us how to work with people with dementia. The booklet is aimed at people with no real knowledge but may have developed some misunderstandings as Norrms identifies above.
    The work has been incredibly successful influencing retail as well as healthcare.
    I tried to scan the front page to show you but i am not that good technically sorry!!

    • Yes, I have seen that booklet as am a Purple Angel, and receive all sorts pof wonderful updates and news. Well done on being published about it in the UKDC. Norrms is a fabulous ambassador and quite a power house when it comes to creating positive change for people with dementia. Congratulations to you both.

  2. It’s good to see that more people are finding a voice and want to be heard, especially about the “you must have dementia” throw away line.
    I will print / copy and distribute to the folk who should know.
    (I do hope that after this first – and necessary – wave of vocalising we will see some positive suggestions. A lot of us aren’t too bad … )

    David

    • Hello David, I know there are a lot of you are doing wonderful things, and treating all patients, including those with dementia with dignity and respect… and you are working hard to spread your work. Thank you. I am working on a couple of lists of positives at the moment, but everything takes time, and inspiration, which is sometimes lacking! You and Faizel are two of my heroes… and I refer to your work often.

  3. Powerful words Norm, I hear every word you speak. My Mum had LB I know exactly where you are coming from 🙂 stay strong , as we live let us live. 🙂

  4. “I am just beginning to see life for what it really is, short, but beautiful” what a wonderful post, thank you Norrms, and all the best for your future xx

    and thank you Kate xx

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