Category Archives: Support groups

Hello, my name is Jerry Wylie

On the final Day of the #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature Jerry Wylie, DAI’s Vice Chair and an advocate from Philomath, Oregon, in the USA. Jerry is a committed and very active board member, and supports two of our peer to peer support groups, as well as co-hosting our Action Group and wekly Brain Health Meetings.

Thank you Jerry, from everyone, for saying hello again here to support this series, and for all that you do for DAI and others. Jerry has also set up a local face to face support group where he lives, which now has more than 20 members. We are very proud of him, and grateful for his hard work. This is his story.

It is a matter of our Civil Rights

DAI & Jerry Wylie © 2018

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

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Hello, my name is Christine Thelker

Image source: Christine Thelker

On Day 29 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate, Christine Thelker from Canada. Christine is an incredibly active advocate and DAI member, and supports one of our CA/USA support group. She was also featured in our online Art Exhibition this week!

Thank you Christine for sharing your story by saying hello here, and for all that you do for DAI and others. We love you too. Special thanks also to Mike Belleville for finalising the production of Christine’s video, and upoading it into our YouTube Channel.

Joining DAI saved my life

DAI & Christine Thelker © 2018

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

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

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 name is Bob Murray

Image source: Bob Murray

On Day 25 of our #DAI #Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature DAI member and advocate Bob Murray from Canada.

Bob is also an avid golfer, and a very active member of DAI, attending the weekly DAI peer to peer support groups, our Action Group, our monthly Cafe Le Brain, and the weekly Brain Health meetings. We thank Bob for sharing his story with us here.

Let me help you understand…

Hello, my name is Bob Murray. I have ‘lived well’ with arthritis, cancer, a lousy memory, a hearing impairment, depression and more, and I still live with these health issues, the least of which is ‘ageing’. I now have a dementia and  intend to live well with it wherever the journey takes me. I also want to help you understand.

In 2013, when I was 74, now five years ago, I told my family doctor that I felt that my short-term memory was worsening – ‘senior moments’ were coming more frequently. She did a quick ‘clock’ test and suggested that I get a SPECT brain scan. The result was called ‘mild cognitive impairment’ (MIC – a dementia) which can progress to frontotemporal dementia – a disease of the brain with no known cure. Since then I have read everything that I can find out about MIC and Dementia. Some say the worst of all the dementias is Alzheimer’s Disease (AD). Scary stuff. My wife of one year was probably more scared than me.

I have had a good life and intend to continue the same into my 90’s. Genetics means a lot to me. I take after my father who lived for 52 years with type one diabetes and died at 89 of a stroke. His 3 siblings lived well into their 90’s. My daughter got type one diabetes when she was 7 and is now 46 years old and is doing well. Diabetes skipped my generation. I am the fourth generation of Murrays in the printing industry and my son continues this tradition.

My dementia is progressing slowly

I’ve been Lucky. My dementia is progressing slowly. My ‘senior moments’ are increasing in frequency but, with the help of my caregiver, my wife, I am still ‘living well’ with dementia quite enjoying my life.

There are 2 Doctor’s work with Dementia that I follow closely – Dr. Dale E. Bredesen and Dr. Norman Doidge. If you were to Google these names you will discover a great deal of information re the reversal or delay of cognitive decline and the brain’s way of healing. These are my guidelines for my life in my future. The keys are exercising and nutrition and everything in moderation

I’m now 79 years old, I’ve had a good life, I am LIVING WELL WITH DEMENTIA and intend to continue into my 90’s.

When I was 78 years old my family doctor and the head of our memory clinic and my local Alzheimer’s Society told me that there was nothing they could do for me – I was doing well. We moved away from the big city (Toronto) to a rural small town (Seaforth) in 2015 for it’s peace and quiet. Here I was introduced to the local Alzheimer’s society for counselling for me in Dementia and Care Giving for my wife. Time well spent!

I was introduced to their educational specialist who suggested that I look up the blog of Kate Swaffer who is founder and CEO of Dementia Alliance International (DAI). This organization is restricted to those with dementia. Currently I talk weekly with others over the internet for 2 – 1 hour sessions throughout the world. I was no longer alone. Highly recommended – no cost.

From my time with depression (my early 40’s), I learned that writing about myself was very therapeutic. I met with our local Alzheimer’s Society and we developed a strategy that I would tell my story with dementia and they would publish it in their monthly Alzheimer’s e-newsletter.

Thus was born “My Voyage with Dementia”.

This September’s column was my 11th column and I am also being published in a ‘opinion’ section of a local weekly newspaper. All the columns are on this blog, My Voyage.. This column is now being published on the South Western Ontario website.

Seeing my opinion column in print is very exciting.

Coming up with monthly columns with my personal experiences on dementia has not been as tough a job as I had anticipated. Going weekly may be in my future – it excites me as a great challenge. I meet with the newspaper in 2 weeks to decide on a win-win course of action. Stay tuned. In the meantime please read my past columns – I appreciate comments. This challenge seems to be slowing the progress of my dementia. Time will tell.

Keeping my brain fully engaged is important to me. Incidentally, since starting to learn to play the saxophone my golf game has improved from the mid 90’s to the mid 80’s. If you are a golfer you know that golf is a brain game.

And, life goes on… I do wonder what is next.

Bob Murray © 2018

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

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

Hello, my name is Davida Sipe

Image source: Davida Sipe

Welcome to another day of World Alzheimer’s Month, where we feature a #DAI member from the US in our #Hello series for #WAM2018. Thanks Davida for sharing your story.

Lewy Body Dementia and Me

Hello my name is Davida Sipe. I first experienced memory loss, confusion, mind fog and hallucinations when I was 50 years old. I spent over a year and many tests with my neurologist to first obtain an early onset Alzheimer diagnosis, which was changed three months later to Lewy Body Dementia by a neuro-physiologist after in depth testing.

My father also had Lewy Body Dementia and when my DNA was tested, it showed that I carry the highest risk dementia gene so mine is most likely due to Alzheimer running on my mother’s side of the family and Lewy Body Dementia from my Dad.

The diagnosis was devastating at first because I had just recently remarried and I was only 51 years old. I was really struggling with day-to-day activities and could not be trusted with financial responsibilities. My last employer strongly encouraged me to quit since I could no longer handle working in customer service and entering orders so I had been unemployed for several months with no prospects of a job that I could actually successfully complete daily. I had truly hit rock bottom when I got my diagnosis.

My neurologist is a wonderful doctor and immediately placed me on medications to treat dementia, which included an anti psychotic to alleviate the very real hallucinations that I was experiencing on a regular basis.

I also started reading about everything that I could learn about Lewy Body Dementia including support groups like Dementia Alliance International and joined their peer-to-peer online chat group.

Exercising, staying socially active & acceptance

Now I exercise daily, watch my diet, stay socially active with my friends and take my medications. I am not able to work and have been approved for disability to help us financially. Despite not working, I stay with a daily routine of activity to keep myself physically, mentally and emotionally active each day. With my medication, currently my mind has cleared a great deal and I only occasionally suffer from hallucinations.

I feel your state of mind and willingness to accept your disease aids in fighting the progression. My father was not so lucky. He refused to accept his diagnosis and would not take his medication to fight the symptoms until he was in the later stage and could no longer refuse them. At that time the medication made very little difference in his mental state. I watched him deteriorate until he was almost unable to swallow and had pneumonia from aspirating his food. A couple months later, he suffered a major stroke and was taken from us…… I honestly felt that his resistance to the medication only made his condition worse so I believed it necessary to accept my diagnosis and to work with my doctors to fight this horrible disease.

Yes, at nearly 53 years old, I have days that the weight of my disease hangs heavily above me but I still fight to stay me. But I have a loving husband, two children and now two grandchildren to fight to stay as clear minded as I possibly can and so far it is working.

I am still me.

Davida Sipe © 2018 

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

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

Hello, my name is Tomofumi Tanno

It is Day 22 of the #DAI #Hello my name is series for #WAM2018, and we have the privilege of sharing a story written by our friend and colleague in Japan, Tomofumi Tanno. A few DAI members had met him in Kyoto, and long time pioneer advocate from Scotland has collaborated with him for a few years. Tomofumi also has published a book: Together with Tanno Tomi Fumiga – tanno tomofumi egao de ikiru ninchishiyou to tomo ni

I, it is dementia 

By Tomofumi Tanno 44 years old 
August 28, 2018 column [translated using free Google Translator and published with permission]

Although it is my first meeting, “Alumni Association” … a journey in Chicago I met a dementia party in the world!

The international conference of the International Alzheimer’s Association was held in Chicago, USA, for four days from the 26th last month. I also came to Japan on 24th to attend.

I exchange opinions with the Australian, American, Canadian parties once a month using Web conferencing software “Zoom”. English is totally useless, but everyone’s friends and Japanese women living in Australia do interpretation and there is no inconvenience. As the parties often share, I always feel a conversation.

I heard that their friends participate in this international conference from their respective countries, and I decided to go. I made a lecture abstract summarizing what I want to tell everyone from Japan living with dementia in the Japanese, I translated it into English and entered it.

Finally a member of the web conference … cross the language barrier and interact.

An Alumni Association of people with dementia

Image source: Kumiko Mugomi 2018 Left to right: Jerry Wylie, Tomofumi Tanno, Christine Thelker, Kate Swaffer, Mike Belleville

Actually, I have never met with many of the members of “Zoom” directly. However, I always do not feel like having a face for the first time thanks to matching the face on the personal computer screen. I felt like I met my old friend again. Other people seemed to feel the same way, and they said “everything is like an alumni association”.

There was a rest room for the parties at the venue, and it was a place to interact. I had an interpreter interpreter by someone near me and talking with gestures, but I could break down immediately and I felt almost no wall of words.

“We are experts in dementia.”

Consciousness to change society

I repeatedly heard the word “Dementia expert” at the conference. Our parties living with dementia are the “experts of dementia”.

After a researcher’s presentation, the parties who came in the venue raised their hands and asked, “Does the research team have people with dementia?” Then, when I heard that there is not, I criticized himself as “Is there any meaning to invest funds for research done without listening to the opinions of the parties?” And stated, “By using us for better research; Please appeal. ”

Among the parties in Europe and the United States and Australia in particular, there is a strong awareness that “we change society”. It is hard to imitate me to criticize the research of scholars from the top, but I am impressed with the attitude of the parties and proud to participate actively with society.

僕、認知症です~丹野智文44歳のノート
2018年8月28日

コラム
初対面なのに「まるで同窓会」…世界の認知症当事者と出会ったシカゴの旅

国際アルツハイマー病協会の国際会議が、先月26日から4日間にわたってアメリカのシカゴで開かれました。私も出席するため、24日に日本をたちました。

私は月に1度、オーストラリアやアメリカ、カナダの当事者たちとWeb会議ソフト「Zoom」を使って、意見交換をしています。英語は全くダメなのですが、皆の友人でオーストラリアに住む日本人女性が通訳をしてくれるおかげで不自由はありません。当事者同士、共感することも多いので、いつも会話が弾みます。

その仲間たちがそれぞれの国からこの国際会議に参加すると聞いて、私も行くことにしたのです。日本で認知症とともに生きる私から皆さんに伝えたいことをまとめた講演要旨をつくり、英語に翻訳してもらってエントリーしました。

Web会議のメンバーとついに…言葉の壁を越えて交流

実は、「Zoom」のメンバーの多くとは、これまで直接会ったことはありませんでした。でも、いつもパソコン画面で顔を合わせているおかげで初対面という気が全くしないのです。以前からの友人に再会したような感覚でした。他の人も同じように感じていたようで、「まるで同窓会みたい」と口々に言っていました。

会場には当事者のための休憩室があり、交流の場になっていました。私は、そばにいる人に通訳してもらったり身ぶり手ぶりで会話したりしていましたが、すぐに打ち解け合うことができて、言葉の壁はほとんど感じませんでした。

「私たちは認知症の専門家」社会を変える意識

会議では、「ディメンシア・エキスパート」という言葉を繰り返し耳にしました。認知症とともに生きる私たち当事者こそが、「認知症の専門家」だというのです。

ある研究者の発表の後、会場にいた当事者が手を挙げ、「その研究チームには、認知症の人はいるのですか?」と尋ねました。そして、「いない」と聞くと、「当事者の意見も聞かずに行う研究に資金をつぎ込む意味はあるのですか」と厳しく批判し、「よりよい研究のために、ぜひ私たちを利用して下さい」と訴えていました。

特に欧米やオーストラリアの当事者の間では、「自分たちが社会を変える」という意識が強いのです。学者の研究を真っ向から批判するなんて、なかなか私にはまねができませんが、当事者が誇りを持ち、主体的に社会と関わっていこうとする姿勢が印象的でした。

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

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Hello, my name is Phyllis Fehr

On Day 14 of the #DAI #WAM2018 #Hello my name is blog series, we feature DAI Board member Phyllis Fehr from Canada. This series is about raising awareness of the many lived experiences of dementia, and highlighting the challenges, as well as the reality that so many people continue to live positive and very productive lives even when diangosed with dementia. Thank you Phyllis for sharing your personal story, and all that you are doing for DAI and with your colleagues in Canada.

I AM STILL ME

Hello. My name is Phyllis Fehr. I worked as an ICU RN until I developed younger-onset dementia.  At the age of 48, I started to see some typical early signs, such as misplacing things and forgetting appointments.

It wasn’t till I was 53 that I received a firm diagnosis, after going through a two-day battery of testing.

I will never forget that day or maybe I will, but I feel like it has been branded in my head. You see on that day we were escorted into the gerontologist’s office. Once she entered the office, I felt like I no longer existed. She looked at my husband and spoke to my husband. As far as she was concerned, I was not there. She told him that I had “early”-onset Alzheimer’s and that I was still doing well. She instructed him to bring me back when I couldn’t dress myself.

I couldn’t say a word! I was in shock. First, I’d been given a diagnosis of a terminal disease. Yes, I was a health professional and aware. Yes, I was ready to hear the diagnosis.

But she treated me with disrespect. She ignored me. One day, I’m functioning and the next moment, I am diagnosed with Alzheimer’s and have immediately lost all capacity? That experience really bothered me. It left a disabling affect on my being.

So, I requested my neurologist to refer me to someone else.

For nine months, while I waited, I became with drawn. I did not want to be Involved. That first gerontologist, left a disabling impression upon my being. I lost all confidence in knowing anything. She actually broke my will to continue on.

The referral took a while, but it was worth my wait. This new doctor, spoke to ME.

She seemed to understand what I was going through. She supported me and encouraged me. This made a world of difference to how I thought about dementia. She gave me back my person hood, she gave me back my will to go on, she turned me into the person you see today, the person who goes out and advocates for dementia, advocates for change. I have regained my voice; I have regained my confidence. I am involved again, not just in advocacy and public speaking, I’m involved in research, I am a test subject and I am a researcher. It may be hard for me but I can still do it. I sit on a group called the voices group, we help research from our lived experiences and we are respected.

When I joined Dementia Alliance International, I became stronger. This is due to the support we have for each other, online support groups and the educational events they offer. Just being able to see others with the same disease process, doing well, gives me hope and makes me want to change things in the world to help all people who are living with dementia. On 30-31 October 2017, I was pleased to represent DAI at the NCD Alliance workshop: “Our Views Our Voices” in Geneva.

When Canada reported on the CRPD, I also attended the United Nations as part of their civil delegation. I work within Canada along with the government relations’ officer from the Alzheimer’s society to push forward human rights for people living with dementia in Canada.

The Alzheimer’s society of Canada has work very hard with their Advisory board of people living with dementia to put together a Canadian Charter of Rights for people living with dementia. I was able to have a look and give feedback to this group.

I would encourage you to have a look and hear the stories of some of the people who were involved.

You can download the Charter of Rights here…

Today I realize I still have my intelligence. I just need to access it, differently. I still have all my educational experience. I am still ME.

Phyllis Fehr © 2018

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

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

Hello, my name is Maria Turner

On day eight of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our USA members stories of living with dementia, and the presentation she made on Day two of the ADI confernce recently with her amazing son Rhys Dalton.

Thank you Maria and Rhys for allowing DAI to publish this during September to help us raise awareness. Together with Rhy’s fiance Kayla, you are an awesome team, and we love and are inspired daily by you all.

This is an example of Maria using her voice. Their full speech notes are available here…

Mother and Son: The Impact of Younger Onset Dementia (YOD)

Dementia Alliance International, Maria Turner & Rhys Dalton © 2018

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Hello, my name is Carol Fordyce

On day seven of DAI’s World Alzheimer’s Month #WAM2018 series of #Hello my name is blogs, we share one of our UK members stories of living with dementia. Thank you Carol for writing your very first blog for DAI for this series to help us raise awareness. You and your husband Brian are an inspiration to us all.

This is me… Getting on with life!

Carol and Brian Fordyce

Hello, my name is Carol and I am aged 61. I was diagnosed with Younger Onset Alzheimer’s Disease in December 2015. 

I had various problems and issues for over twenty years, which began in my mid thirties.

When I received my diagnosis it was therefore not such a dreadful thing, but a huge relief that there was actually a valid reason for what was going on.

I could now understand and deal with this new life. I could seek further help and advice, read up on literature and ask questions to know what this thing is and how to deal with it.

From this moment on I could plan my life around my dementia, and put in place strategies to help me cope with the symptoms. The one amazing thing to come out of this was a personality change, which turned me as a person upside down, and actually made me a better person.

I used to be very shy, quiet and introvert. From a very early age I can remember being painfully shy, I would never speak out at school, make friends or speak out about anything. If I did, I would be ridiculed and laughed at. It was a very difficult time and one I choose to forget.

But now, since my dementia, I am outgoing, make many new friends and speak at conferences, meetings and anything really that comes up. I write poetry, stories and try new things all the time.

This is the new me, and I must say, I love the new me and all that has come with it, other than the dementia of course. But without that I would still be the old me.

I have a wonderful husband, Brian, who is also my carer. He is amazing in all that he does for me. At first, yes we had problems. He would try to do things for me rather than help me to do them. We had a few minor arguments and he eventually asked how I would like him to help. We had a great discussion and things got sorted. Now we make a fantastic pair. I ask for help when I need it and Brian watches me covertly to see if I am struggling. He will often offer his help, other times he just watches and makes sure I am ok and most importantly safe.

Without Brian in my life I dare say I would slide down that slippery slope would not achieve what I do, I would not faster than Sonic the Hedgehog on ice.

So, this is me, with my dementia, and my wonderful husband Brian, getting on with life to the best of our abilities.

We have a great life even with DEMENTIA. You can too.

Carol Fordyce © 2018

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