PURPLE CITIES NEWS & BLOG
Purple Cities is completely volunteer based. We have no paid staff. We hold no fundraisers. We rely completely on the kindness of people who give freely of their time and resources to create a community that is prepared to lend a hand to our neighbors with dementia.
We give the basic information at our trainings, which can be 15 minutes long or an hour depending on the requirements of the group. The materials we use are available on the website for anyone to download and use in order to spread our message.
On October 20, 2015 at 8:30 AM our Task Force will meet at Renaissance Terrace for our first meeting since last spring. At this time we will once again "Train the Trainers". The more trainers in the community the more people we can reach! If you are interested in joining us, please come to this meeting. Everyone is welcome! We need you!
There are more and more inquiries from around the country asking how to get started. During the first meetings where we began building what would become Purple Cities Alliance, we had such complicated, huge plans but we quickly realized that simplicity was our best advantage. The idea was to spread awareness, to give as many people as possible a small amount of knowledge about dementia, knowing that once we open the doors people would seek further information. Our first and most important goal was to help the general public understand what it is like for our neighbors who are living with dementia and are still living and working in the community. We saw first hand how many of our friends and advocates who stood with us a few years ago were now living with dementia themselves. We know how many of our friends and families are living with a loved one who is dealing with dementia. What we want is for everyone to understand, welcome and support these people. To understand the determination to live every day to the fullest in spite of a disease that is unrelenting.
If a neighbor has cancer or heart disease we all rally around them, encourage them, offer to help. If a neighbor has a disease that brings dementia we back away, we watch them to see how "bad" it is now, we abandon them and their families and we tell ourselves that they wouldn't want us to see them "that way". The truth is WE don't want to see them that way, we are afraid and we don't know what to do or say. In a Purple City people understand and support their neighbors, we learn how to respond when someone is in a frightening situation due to dementia. We know how to approach, what to say, where to look for help. We are proud to know that there are so many other communities who are ready to make the change and become dementia friendly. We also hope that the simplicity of Purple Cities Alliance, the grass roots, volunteer based initiative which has no money or fundraising attached to it but is simply dedicated to creating a better world for people with dementia, will help those communities to achieve it .
Everything we have done is available to anyone who wants to duplicate it. Our education page and powerpoint can be used by anyone who wants them. The logo we designed is easily adapted to show another city and state. We cannot sponsor any other group since we have no funds but we can support them. We will help in anyway we can. This is a surprisingly easy method to acheive a dementia friendly community. It starts with one or two or ten people who have a passion to make it happen and then it grows! We can do this everywhere! Let's start talking!
From our friend Norm MacNamara:
Pushing My Luck
So, I said to Elaine, we drive up next Tuesday night, stay over, speak, then stay Wednesday night, travel and , speak, stay over and then speak in Birmingham??
NOOOOOOOOO !!!!!! Elaine said, She wanted to scream, I could tell, but she didn’t, for the 11th time she tried to explain to me what we are doing next week, it was right there, written in front of me on a piece of paper, and still I couldn’t see it or understand it.
What can you see that I can’t!! I demanded!! “I have dementia, I am not stupid!! I added quickly, please don’t patronise me. “I`m not “Elaine says, it’s just that you’re getting confused.
Well, talk about a red rag to a bull??
CONFUSED?? CONFUSED?? I shouted!! How dare you!! I can quite plainly see what that says and I cannot understand why you’re having trouble reading it properly. I was shaking with frustration and beginning to get really upset, my mind was in torment as the information on this piece of paper jumped out at me and made total sense to me, Then I glanced very quickly at Elaine, wanting and needing her to say “yes your right darling” but she didn’t, instead, she just put her arms around me, told me not to worry about it and we would look at it later. She had distracted me and I went on with my business on the computer, I started to calm down, my breathing went back to normal, and I could feel my face cool down as it probably turned from Crimson red to its normal colour. Half an hour later, I looked at the same piece of paper, and as you may have guessed by now, it was me who WAS confused, certainly not Elaine. What I saw then and what I was looking at now were two totally different things, to say I HATE this disease is the Understatement of the year.
This disease is not just about forgetting things, but in certain types of dementia , like mine, Lewy body’s, it can make you see things that aren’t there, read writing that isn’t what’s written, and talk about things that may never have happened. I am getting progressively worse, and that’s a fact. I am coming up to my 8th year now and for the last few months I have felt as if I am pushing my luck, but PUSH IT I will , for as long as possible, and when I run out of luck I hope you, my dear friends, carry on pushing the same luck until we win
Much love and tons of respect to all, Norrms and a very understanding “ANGEL” Elaine
Diagnosed with Dementia aged just 50 yrs old,
7 yrs ago now
Purple Cities Alliance is the result of work that was begun in Torbay England by a man named Norm MacNamera. Norm's life was as ordinary as anyone else's. He worked, spent time with his family, enjoyed his life until the day he heard the diagnosis of Alzheimer's Disease (a few years later the diagnosis would be revised to Lewey Body). As one might imagine, in that moment the world stood still. How could this be happening to him? He realized he had some cognition issues but Alzheimers? He was only 50 years old and that is a disease for old people not someone who was only 50 years old. It was true, he had dementia and he and his family would have to deal with that.
Daily life became more challenging. Things that were simple and routine became strange and frightening at times, with no warning at all he would be lost in his home town, confused about what was expected of him and afraid of the people around him. He had dementia. He realized that nobody in his home town understood what he was dealing with. And so he began, just Norm and his wife Elaine, going from retailer to retailer, visiting restaurants, libraries, anywhere people would gather. He told the owners, managers and staff what he was going through, how they could help people like him simply by knowing a little bit about dementia. People in Torbay listened. The Torbay Dementia Action Alliance was formed. Within a few years Norm was spreading the word all over Britain. He met with the Prime Minister and members of Parliament and they listened too. The UK began working on dementia awareness and leading the rest of the world toward understanding people with dementia.
The movement spread across Europe and to Australia, Asia, India, Canada and the USA.
If one man with dementia could make such an impact on the world, how much more can we do when we all join with him and follow his lead.
Purple Cities Alliance has begun with Knoxville/Knox County TN. We hope other cities and communities across the country will join us and begin working on creating places where people with dementia can live happily and safely, surrounded by compassionate, understanding neighbors prepared to help when confusion becomes a problem.
Purple Cities Alliance was formed to help educate people about how to respond to someone with dementia. We are totally volunteer based and we do not accept donations. We are a group of people who just want to help change the way people with dementia are viewed and responded to.
One example that Norm shared with us recently will illustrate how this little bit of knowledge can change everything. There was a woman at the grocery store doing her shopping, everything was okay until she got to the check out. She became very upset, was unable to complete her purchase, suddenly lost and afraid, she didn't know where she lived. A young employee had recently completed his short training session and immediately recognized what was happening. He intervened, gently inviting the woman to come sit with him on a bench for a few minutes. His calm approach soothed her and once they were seated and away from everyone else he was able to find out who he could call to come for her. This incident could have had a far different outcome, if the woman panicked and left the store alone, she might have been lost or hurt. Instead her family came to pick her up and she went home safely. This situation and others like it are happening every day all over the world. More and more people are dealing with dementia and many of them are unaware of it.
Purple Cities goal is to give a lot of people just a little knowledge about dementia and how to help. For those who want more information we have a resource page on our website. Our one page handout or our powerpoint presentation (both available for download on our website) will give people some do's and don'ts for dealing with someone who has dementia.
If you are a member of an organization or business that would like to join Purple Cities please fill out the form on our website. Training can be done online or volunteers can come to your meetings and do the training there. We are also available to train members of your organization to do the training for the rest of your group.
For more information email email@example.com or submit the contact us form on our website.
Please help us make the world a safer place for people with dementia.