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Hello, my name is Eileen Taylor

Eileen with her husband Dubhglas presenting at the STRiDE Workshop in London 2018

Following our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we are continuing with our stories, as we have many more than 30 to share with you.

September was an exceptional month for our members, some whom for the first ime, had been given a voice through these blogs.

Therefore, today, we feature DAI board member and secretary, Eileen Taylor from Australia. Eileen also co hosts the Monday Australian support group. She and her husband Dubhglas are also co founder of a local advocacy group in Brisbane, the Dementia Advocacy and Awareness Team (DAADT) . Thanks Eileen for sharing your story and for all you do for everyone with dementia.

I am still Eileen

Hello, my name is Eileen Taylor. I was diagnosed with Familial Younger Onset Alzheimer in 2009 aged 59. I was the same age my Dad when he was diagnosed with dementia back in the 1980’s. Both he and his brother in the UK died with a diagnosis of Alzheimer’s in 1994.

Back then, Alzheimer’s wasn’t really discussed, and we didn’t know how to recognise the signs. My Dad struggled to focus and sometimes couldn’t remember what happened the day before. His doctor just put this down to being eccentric and told us there was nothing to really worry about.

Throughout his long and distressing struggle with dementia, my Dad regretfully was never told the truth about his illness.

While I am now trying to live well with dementia, it was very different when I was first diagnosed in 2009. Then, I noticed I was becoming a little forgetful, but it was nothing too major. I didn’t really take too much notice until one day I saw a documentary on TV about the genetic link to dementia.

Because of what had happened to my Dad, I thought that I needed to know, so I had a genetic test to find out the truth. Not just for myself, but for my two sons and my grandkids too – I thought they had right to know if the gene was in our family.

At first the doctor didn’t think there was any reason to know, after all I was below the age when most people start to show symptoms. But I pushed for it, and I’m glad I did, because it enabled me to catch it early and to be a part of several clinical trials to find answers.

When the results of my genetic test and other assessments revealed that I did in fact have the gene and had Alzheimer’s, the news was initially “mind-blowing”. I was devastated, it was a “surely not me!” moment. I was only 59. It was the worst thing to happen to me. It was at that moment when I actually felt the pain in my chest after hearing news that broke my heart. On reflection it was like:

“Imagining you wake up one morning and your computer has been switched from a PC to a Mac, and the keyboard is suddenly Azerty. You are now trying to write a paper with that, while your hands are cuffed together, and your head is in a bucket of Jelly.”

Nevertheless, after my diagnosis, I chose to engage in, not give in, but to fight for a cure and to support other people as well as their families living with dementia. I was determined not to remain silent (as what had happened with my Dad) but to speak out and talk to people and help them to understand what it is like to live with dementia.

Parallel to the trials, the Dementia Alliance International (DAI) became my lifeline, an oasis in a sea of medical denial and indifference I had seen from some health professionals. It gave me a voice to speak out and I was accepted unconditionally into the group I joined.

Now, thankfully, I am a part of the DAI Board, serving as their Secretary, Advocate and on-line support group facilitator for the Australian and New Zealand people.

I am also an advocate and co-founder with the Dementia Awareness Advocacy Team (DAAT), as well as an advocate and active participant with Dementia Australia (DA) and serve on several dementia committees.

Doug, my husband has supported and helped me to live positively with my dementia by externalizing it.

I am not the problem, the problem is the problem, and in my case it’s Alzheimer’s dementia.

My dementia externalized is; my “Dark Cloud!” It helps me come to terms, that I am not my Dementia, my Dementia is my Dementia, I am still Eileen.

Eileen Taylor © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

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Hello, my name is Veda Meneghetti

Image source: Accolade 2nd Dementia Summit

It’s almost the end of World Alzheimer’s Month, and we have been sharing our #DAI daily members #Hello is stories. In fact, there are so many in our draft folder, we will be continuing them well beyond #WAM2018. These stories have helped raise awareness not only of dementia, but of the unique and individual experiences each person has with a diagnosis of any type of dementia.

Today, we share  Veda Meneghetti’s story, who was supported by her partner Lynda. DAI member Mike Belleville produced the video which shares some of Veda’s beautiful photographs, with her own music, and an overlay of her story, also copied below. Thank you Veda, and also Lynda and Mike for todays blog.

“Hello, I’m Veda Meneghetti. I was born in Adelaide, Australia to an Italian migrant father and an Australian mother. I got called “Veda Spaghetti” at school.

I hated school, but I was a “cool” teenager.  My mother worked in a department store so I always had great clothes. My dad was a stonemason who worked in marble. He kept a wonderful vegetable & fruit garden and I had animals around me….I love animals.

I liked art but hated everything else and left school at 15. They’d made me feel stupid -I didn’t know I was dyslexic till 50 years later. I taught myself to read & write well, but I can’t read a music score.

I’d been playing guitar & singing since I was 10. I went on TV for a young talent time thing & then became lead vocalist for a couple of Adelaide bands. We started touring in Australia and then went overseas when I was 21. I met up with a girls’ band and continued to work with them as resident musicians in Asia, Africa and Europe. We came back to Australia when I was 27 and became the Party Girls band. We toured a lot, made an album ourselves, appeared on TV and wrote a lot of our own music. In 1985 we were the only girls band to kick off the Australian leg of the 1st. world simulcast, Aids for Africa. I did lead vocals and rhythm guitar.

When the band split up I started my own band, Safari, which played regularly in Sydney in the 90s. I kept on writing songs though I retired from performing. My last 4 songs were recorded in 2010.

In 2012 I was diagnosed with Primary Progressive Aphasia (logopenic). I’m losing language so my partner Lynda is writing this for me. I can’t read or type/write anymore, but I understand.

I joined DAI after I met Kate Swaffer. We did a presentation together in Kiama for Dementia Awareness Month 2014. Lynda and I became members of the Kiama Dementia Friendly Community Advisory Group, the #KiamaDAGs. We get together socially with other people living with dementia in our region, run community education workshops and sometimes do media coverage for the project.  Lynda and I have presented at a few conferences, using my songs and our photos. We’ve made a lot of new friends who have dementia. We still get involved in research. I’m not ashamed to say that I have dementia – people need to know what it’s like.

I just want to live in peace. I’m happy living two hours from Sydney – it’s beautiful here. We go back to the city now & then to visit friends, because now most people have stopped visiting us.”

Veda Meneghetti © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Veda. Become a DAI Sponsor or Associate today.

Hello, my name is Wally Cox

On Day 27 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Wally Cox. Wally is an active advocate and DAI member, and co hosts one of our USA support group. Wally also featured in our online Art Exhibition just a few hours ago! Thanks Wally for sharing your story by saying hello here, and for all that you do for DAI and others.

DAI and Wally Cox © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Wally. Become a DAI Sponsor or Associate today.

Hello, my names Dallas Dixon

On Day 26 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate G. Dallas Dixon from the USA. Dallas is often known as the The Dementia Dude, or aka Danger Presley by his friends! It is a recording of the speech he was accepted to give at the 2018 ADI Conference in Chicago, “Humour as a psychosocial intervention for dementia.”

As Dallas was unable to attend, he recorded it instead, and has granted us permission to get to know him through this vlog in our #Hello series. You will be entertained, but there are some very serious messages as well. Thanks Dallas!

Humour: a psychosocial intervention for dementia

DAI and Dallas Dixon © 2018

DAI’s vision: “A World where people with dementia are fully valued and included.”

Help us support people such as Dallas. Become a DAI Sponsor or Associate today.

Hello, my name is Roger Marple

Wow, it is more than half was through the #DAI #Hello my name is World Alzheimer’s Month series! Our members stories have been really well received, and we thank them for sharing them, and especially want to thank you for reading and watching them.  On Day 18 of #WAM2018, we are proud to share the story of one of our Canadian members, Roger Marple. Thank you Roger for taking the time to write it and allowing us to share it here.

Still living well with dementia

Image source: Roger Marple

I was diagnosed with younger onset dementia, more specifically, Alzheimer’s disease in 2015.  I am happy to say I am still living well with dementia in my life.

I find as time as time goes on, seeing thousands of people worldwide still living well with dementia despite any challenges they may experience, gives me hope for continuing to live well with this disease.

Often, I speak about what hope and living well looks like with dementia. I have been accused by people in public media for “sugar coating” this disease. They always make it a point to remind me this is a terminal disease and the inevitable outcome is death. I’ve been accused by people for spreading false hope. To those people I want to say, I do not have an ego so large to think I can beat this disease. To all of those people I acknowledge this disease has a 100% mortality rate. I’m a realist; I know the outcome of this disease.

Now that I have that out of the way I want to share some comments made on twitter from people regarding a discussion about dementia:

Tom Harrington‏ Verified account @cbctom

Tom Harrington Retweeted Roger Marple

My latest follow. A courageous Canadian who’s discussing his experience with #Alzheimers. We need this. Please RT, follow & learn. #ENDAlz

This comment was made by Tom Harrington. Tom is the host of a very popular CBC radio news show in Canada called The World this Hour. I must say I like him and I am enjoying his comments and views on twitter.  Tom is no stranger to dementia in his life. Both of his parents had a form of dementia. I thought it was nice of him to mention me. I agree with Tom, we need more people to understand dementia in our communities.

He was responding to a comment that I had made on Twitter:

@rogerdoger991

Roger Marple Retweeted Sophie Leggett

Alzheimer’s isn’t the end. We all live with this terminal condition called life. Although dementia is different for everyone, it is not uncommon to live well with this disease and enjoy life for some time to come. Something I do every day…

And to Tom’s and my comments another person responded with this:

Replying to @cbctom

But Alzheimers always gets worse once it begins, never better. Don’t give people false hope.

When I read this comment, I wasn’t surprised. In fact I have learnt to expect this.  People have said comments such as this often to me. This person who read Tom’s and my comments only got one thing out of this. Bottom line, things are going to get worse with dementia and there is no hope.

I thought I would do a role reversal with this person’s comment.  Instead of using the word Alzheimer’s in the sentence, let’s insert another terminal condition called life. Now let’s look at this sentence.

But life always gets worse once it begins, never gets better. Don’t give people false hope.

There might be some logic to this comment; eventually things will get worse with this terminal condition called life. Having said that, is that a reason not to have hope living with this terminal condition?

Often I see jokes about Alzheimer’s. I see derogatory comments. This is one of many faces of stigma with dementia.   If you are not sure what I mean by this I encourage you to Google “Alzheimer’s jokes”. You will find hundreds of them not to mention many websites with more jokes on them with dementia/Alzheimer’s.

When I look for jokes about other serious diseases in our society like ALS or cancer, I cannot find any. It is just not okay to joke about these conditions, and usually, if we hear of a joke about this, people are furious at comments made. So I pose the question, why is it fair game for people to make fun of people with a form of dementia? Why can’t people see how fundamentally wrong this is?

What if the role was reversed? What if people with dementia posted thousands of jokes poking fun at your weakest points you may experience living with your terminal condition called life? What if thousands of people shared jokes about you and the challenges you may experience on public media, like Facebook, or in your community? What if you opened a birthday card with a joke about your struggles? Alzheimer’s for example.

Would you feel like crawling under a rock and hiding your challenges from the masses making fun of you and not engaging in life to the fullest, regardless of your challenges? Often this is the case for people living with dementia and our loved ones who live with this disease as much as we do. I see it all the time.

As a person living with dementia, here is a promise I will make to all of you. I promise I will not make fun of any challenges you may have with your terminal condition called life. I will see who you are regardless of any challenges you may have.  I will recognize and support you to live your life to the fullest regardless of challenges you have. I promise to recognize what hope looks like for you living your life to the fullest, with the time you have left, so you can live a good quality life. And most of all, I will respect who you are.

My hope is that someday all of us will recognize people with a terminal diagnosis of dementia, and people with a terminal condition called life, that both groups have the same hopes and dreams. Perhaps with time we can walk in each other’s shoes and have a better understanding for each other. People with dementia want to live a full life for as long as we can — just as we all do. We may have to work a little harder at it that’s all. We are all the same my friends.

I have a philosophy in life. I show my utmost respect to everyone I meet. Would it be too much to ask for the same in return?

By the way, Tom Harrington had a response to this person’s comments about “false hope” with dementia:

Tom Harrington

@cbctom

Replying to: This isn’t false hope. I lost both my parents to it. This is about an act of courage and awareness. It’s the cancer of the 21st century and we need to focus on it more.

Tom made some good points here. He understands the need for greater understanding of dementia. He knows what dementia in his life looks like. There is something to be said about lived experience.  At the end of the day it will be understanding that will eliminate the stigma that we have to endure living with dementia. As far as the courage part? I look forward to the day when courage is not needed when speaking about our journey with dementia.

Last but not least, all who live with dementia in your lives know this. One person by the name of Naquib Mabfouz said “Fear doesn’t prevent death. It prevents life” Please do not let fear from stigma get in the way of living well with dementia.  The problem is with the person perpetuating the stigma, not you. Remember that.

As I said, my name is Roger. I live well with dementia. My hopes and dreams in life have not changed.

Roger Marple © 2018
@rogerdoger991

DAI’s vision is “A World where people with dementia are fully valued and included.”

Help us support people such as Roger. Become a DAI Sponsor or Associate today.

Hello, my name is George Chong K.L.

On Day 16 of the #DAI #Hello my name is series for #WAM2018, we are featuring a short story and  video about one of our members in Singapore. The Alzheimer’s Disease Association Singapore has been working hard towards empowering and developing people with dementia to become self advocates, and also to set up their own Dementia Working Group next year. DAI is delighted to support them, and to be able to share part of George’s story with you today…

There is no cure

Hello, my name-George Chong K.L. At the age of 46, I went through my first investigation for dementia in April 2016, and was diagnosed with Brain Atrophy through MRI, and advised it was Mild Cognitive Impairment. In January 2017 I sought a second opinion, and in April 2017 had further investigations including a Pet Scan and Lumber Puncture.

The diagnosis was Younger Onset Alzheimer’s Disease. Like many, I was not thrilled with the diagnosis, so I decided to get a third opinion which ended in the same conclusions. I was prescribed with Echelon Patches in September 2018. I learned about DAI though meeting Kate Swaffer, when she came to Singapore in 2017 as a guest of the Alzheimer’s Disease Association here, and since then am probably considered Singapore’s first self advocate! 

As there is no cure, and no disease modifying drugs, I use a number of holistic remedies which include the following:

  • Ketogenic Diet
  • Meditation 
  • Acupuncture
  • Yoga
  • Qigong
  • Coloring in Puzzle
  • Playing frisbee 
  • Light walking or running

The disabilities I experience caused by my dementia include losing the ability to do mathematical calculations, understand instructions and logic, my verbal expression, memory loss, and sometimes frustration and even anger. Living with changing abilities and losing what used to be automatic and easy functioning is very difficult to get used to, and therefore easy to feel upset about.  However, my wife Lyn and I continue to face dementia together, as best we can.

The following short film was made this year to raise awareness of dementa in Singapore, and about my experiences [apologies we have not been able to embed it, so please follow the link].

Talking Point 2018 – EP7 Thu 31 May 2018 – Am I At Risk Of Dementia?

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