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.
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.”
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.
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!
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.
Welcome to Day 23 of World Alzheimer’s Month – also referred to as Dementia Awareness Month in some countries. Today, we feature a DAI member from the UK in our #DAI #Hello my name is series of daily blogs for #WAM2018. Thank Tracey for sharing your personal story.
I love my life…
Hello, my name is Tracey Shorthouse and I was diagnosed with younger onset of Alzheimer’s Disease and Posterior Cortical Atrophy in 2015 at the age of 45.
I was relieved to get that diagnosis as I thought I had MS.
Like a bad nurse I was, I googled my symptoms and thought the worse. It’s a funny thing perception, what we think we can cope with and what we can’t.
I was working as a community staff nurse with the district nurses and I had started having problems about two years previously, with numerous falls, weakness down one side, balance problems, perception problems. Sometimes I couldn’t remember how to write numbers and I got behind on some paperwork. I got lost driving, I couldn’t remember how to drive a couple of times. It was scary stuff really.
The worse part was getting anyone to believe that there was anything wrong. In May 2015, I went into hospital because my Dr thought I had a brain tumour and the hospital thought I had had a stroke. I had numerous tests and scans including MRI and CT of my brain and nothing showed so the neurologist thought I was having a stressful episode and put me on Amitriptyline with no follow up and discharged me. (I have since found out that I did have a cerebral bleed back in 2015, but it wasn’t picked up, a brain scan last year saw an old bleed from that time) I went back to work, and my memory was getting worse, I had no clue what I was doing or recall things. I went back to my GP who told me I was wasting his time.
So, I went to see a different Dr and requested to be referred to a memory clinic. Which this Dr did do, and I went to my first memory clinic in June 2015. I failed this and took part in a second more in depth memory test in August 2015 which I failed. My speech was getting affected by this time and I couldn’t remember how to pronounce words. I saw the consultant in October 2015, and he told me that he suspected I had dementia but wanted to run through a variety of blood tests and scans to be sure. Which I duly had. I saw him again in December 2015 when he gave me my proper diagnosis. He started me on Donepezil and stopped the Amitriptyline.
I retired as a nurse in May 2016 at 46 years old
I didn’t quite know what to do with myself once I retired. I felt a bit lost. My consultant had arranged for an OT to visit me regularly and she got me into going to different groups to find out what suited me. I go to a group called SUNshiners monthly, and its part of the DEEP (Dementia Engagement and Empowerment Project) network. Through that group I started doing talks about living well with dementia, about bringing awareness that dementia affects all ages and that we are all different.
Then it snowballed from there, and I found I was travelling to London and going to conferences and talking there. It makes me feel like I have a cause, and it encourages me to keep fighting. I also researched my dementia, so I could understand it. And joined a support group in London which has helped immensely at times. With PCA the brain changes what the eyes see, so what I see isn’t always what is true. It’s a learning curve always. I stopped driving soon after my diagnosis as I went through a red light after my brain told me it was green.
I’m still very active
I now have fingers in lots of projects. I am a member of Dementia Alliance International, I am part of a task force to make all hospitals in the UK dementia friendly, I am part of LEAP (Living Experience Advisory Panel) to do with Admiral Nurses, I am part of the Dementia Action Alliance, I have a new project hopefully starting soon to do with gym, sports and dementia.
I go to a gym three times a week, I was seeing a neuro physio who encouraged me to join. I love it. I have a set routine which my physio and trainer devised. I go to a balance class run by physios to hopefully help with my balance for the future. I go to a writing and art group that’s nothing to do with dementia. Its important to be me Tracey over me with dementia all the time. I love my life. I do so much more since I have been diagnosed, than when I was nursing.
My ethos in life was to help others, and still I do that just in a different way, hopefully it will continue.
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
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
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.
On Day 20 of the #DAI #WAM2017#Hello my name is blog series, we share long time DAI member and friend from the Czech Republic, Nina Baláčková’s story. Through their personal stories, our members want to raise awareness of dementia, and to highlight that each persons lived exerience of dementia is highly individual.
By speaking out, people with dementia are individually and collectively increasing the worlds understanding of living with dementia, and also hope to break down the stigma, myths and discrimination still being experienced. Thank you Nina for allowing us to share your story here.
Raising awareness and finding humour
Hello, my name is Nina Baláčková. I am from the Czech Republic. I am proud to be a member of DAI for several years.
I was diagnosed with Alzheimer’s (Young onset) in 2007 at the age of 49. It took me several months to accept this disease. When I realized that my life can continue, though in another more difficult form, I decided to enjoy every day I will be here, on the earth, with my family.
We did not know about Alzheimer’s during my mom’s lifetime. Only after her death did the doctor tell me that she had the last stage of Alzheimer’s. It was one of the reasons why I decided to speak up about dementia.
I wish to raise awareness of dementia for many people. So, in 2009 I started to organize discussions named My life with Mr. Alzheimer.
Then I became a member of European Working Group of People with Dementia (EWGPWD), and It has been my pleasure to work with this group of dedicated advocates. I very recently stepped down as a member of the EWGPWD. I am also grateful I was able to speak on the ADI conference in Taipei.
Thanks to my family, to my strong will and strong faith, support of my church and many friends I have been fighting Mr. Alzheimer persistently for 11 years.
Even though after my husband had been diagnosed with Alzheimer’s last year, it has been very difficult, we still try to enjoy our lives.
The Potato Soup Given my lack of taste, smell, poor estimate of the time, distance and quantity, cooking is becoming quite an adventurous matter for me. And I did not even mention the forgetfulness. One autumn day a few years ago I decided to cook potato soup. After the vegetables was ready, peeled, scraped and cut up, I prepared a nice dark roux. Mushrooms, thanks to my daughter, I also had enough. I guessed that I had something missing. But hat was it? Garlic? Marjoram?
That day my friend Eva came to visit us. The soup seemed to look pretty good and was nice and thick. As my friend appeared, I immediately gave her a taste to find out whether it is necessary to add more garlic, salt or marjoram. My husband, my friend Eva and I, we had a dinner together.
When my husband almost finished, he innocently remarked that it just did not have any potatoes. I thought for a long time and then burst out laughing: “Well, you could not find it, because I forgot to put potatoes in it” . For a long time we were laughing with my friend: potato soup without potatoes ….
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
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:
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:
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.
On Day 17 of the #DAI #Hello blog series for #WAM2018, we introduce you to a group of people who live in a residential aged care facility in New Zealand, called the Selwyn Singers. Instead of highlighting one member, we wanted to highlight this group, and their performance which was recorded especially for DAI’s very first World Rocks Against Dementia #WRAD2018 event held in March.
This wonderful group of Super Stars (the singers) are Mary Bubs Johnson, Erick Deverick, Lois Jackson, Valerie Harris, Barbara Manterfield, Dorothy Mayo, Lillian Neilson, Jill Renner, Julie Mellsop and Airlie Seay. On the day of the recording, they were supported by staff, including the Diversional Therapist Annaleise Van Ham, the Activities Coordinator Alice Halavaka and the Group Diversional Therapist Orquidea Tamayo Mortera. We thank them all for being involved and sharing their lives through their beautiful singing.
What a beautiful world, by the Selwyn Singers
The Selwyn Foundation Singers
The group is made of residents living in care homes such as; our memory support home, our hospital care home and our residential care homes. They practiced for a good 3 months to get the song right J knowing that it was going to be showed to a very special group of people across the planet.
It was very meaningful as Selwyn Village is the home for almost 700 older adults and this special group needed support to meet in the village community center, as they were coming from all different homes on the day we filmed it.
The Selwyn Foundation homes (where we work and the residents live) has gained lots of awards and recognition in New Zealand for the way we support our elders to keep engage in life through meaningful diversional therapy programs that are person centred. But we are also working in strategies to help to make new Zealand ageing friendly and dementia friendly communities everywhere. Our residents do anything and we support them to fulfil their dreams and aspirations