Me And My Dementia by Norrms Mc Namara

Contributed by: Norrms Mc Namara

Hello all, my name is Norrms Mc Namara, I am the founder of the Global Purple Angel dementia campaign and I have been asked to write a column about living with my dementia in the hope it helps others, here’s how it all began, as you will see, I was lucky to be have been diagnosed so quickly.

The test I was given was a very simple twenty questions test about Date, time, and day of month ECT. All came good apart from the date and that wasn`t a major problem, apparently, it was the time to answer these simple questions. A decision was made to see a Brain Specialist at our local memory clinic.

After what seemed like an age but was really only a month (my idea of time was getting mixed up by now) I saw a really nice doctor who gave me a complete physical and was then passed on to a nice Psychologist who sat me down and gave me what I have fondly since called a “Stupid Test” which lasts about one and a half hours. I didn’t think I did too badly but that wasn’t the case as very soon after I was asked to attend the local hospital for what is called a perfusion scan on my brain, this I did and it took about three-quarters of an hour. 

This was on the Wednesday of the week and by Friday I had a phone call from the brain specialist saying he had the results and wanted to see me.

Eventually, after the pleasantries, he said the results had shown a lack of Oxygen flowing on my left-hand side of the brain, even less flowing on the right side of the brain but more worryingly much less flowing over the top of my brain which in itself was a sure sign of mild to moderate Dementia.

It went so quiet and I knew I couldn’t look at my beautiful wife just yet as the tears would have flooded out. “I`m only 51 I blurted out! How? Why? When? All this was coming into my head but no words were leaving my mouth. I turned and looked at Elaine; she had tears in her eyes.

Elaine looked me squarely in the eyes and said “ Right !! That’s that, now, what are we going to do about it!! It was decided to tell all our immediate family straight away as I thought that at least if they know from early on they will have time to get used to their Dad, Grandad was ill.

The only advice I could give to anybody who finds themselves in my unfortunate position is to try to get help early on, the earlier the better, don’t be afraid of telling people, you are ill, not Mad, it’s a disease of the brain just like any other disease.

WHAT WE DID NEXT

The Purple Angel dementia campaign was born right here in Torquay UK. Most will remember us starting out as the Torbay Dementia Action Alliance and that’s something we are so incredibly proud of and something that will never be forgotten. It’s a little-known fact that on the very first day when we held the meeting we had councilors attend, Drs, Nurses, carers, and the general public with a dream to make Torquay dementia aware, not

knowing what the future held but with hope in our hearts and a plan, well, sort of.

Many spoke about what was wrong within Torbay regarding dementia care but we explained very politely that we knew all that, and we were there to change things for the better so we asked them to concentrate on what we could do, not on what has happened previously, we can’t change the past we said, but we certainly can change the future!! And with that, the meeting continued!! 

It wasn’t till the end of the meeting and plans had been made when we all suddenly realized we had no funding whatsoever, not even for the paper to print the minutes out, I kid you not!! So one of the councilors grabbed a vase from the room we were in, pulled out the plastic flowers, and passed it around for people to throw in whatever they could, and that my friend, is how the Torbay dementia action alliance / Purple Angel dementia campaign began! 

So very hard to believe from that very humble start we are now, 10 years later, recognized in over 65 countries around the globe, have been to Downing Street for lunch with David Cameron, had Prince Edward visit our memory café but more importantly have now 1,000s of Purple Angel dementia ambassadors in the UK and around the world who have their very own teams so there are too many to count. We opened the very first memory café in Africa which made CNN news no less, and also were responsible for opening the very first memory café in the USA of which there are now 1,500 across the states, we like to think that the

The Beatles weren’t the only ones to crack America!

We also hold every year and have for seven year`s now a “World Rocks against Dementia” where every year people all over the world hold a small/ large event in memory of those we have lost to this awful disease. We have had in the past over 22 countries worldwide join In and so many people across Torbay and the UK are also so supportive on this very special day. 

We had to change our name to Purple Angel dementia campaign as everybody has to have a logo. Because of the way we do things, with nobody in the world being paid for what we do and all of us being volunteers, when we launched, the whole world and his wife wanted to know how we did it. I must admit sometimes, just sometimes, I look back and think OH MY WORD what have we done, but then I know I am surrounded by so many like-minded people around the world who just want to help, others, not for the praise or the pat on the back, but just knowing you have helped a fellow human being enjoy life a little better. We have since gone on to fundraise so very hard so we could send our PRE Loaded MP3s to as many as possible with dementia in the UK.

What does the future hold??

Not too sure about living with this illness I never plan that far ahead these days, but I do live by “ Surround Yourself With Good people And Good Things Happen “ so I will carry on doing that

Very best wishes to all my friends in the USA.

Norrms Mc Namara Founder of Global purple Angel dementia campaign

Website  https://purpleangel-global.com/