Following on from the World Alzheimer’s Month series of #Hello blogs, we continue to share our members stories. Peter Berry from the UK has been doing a weekly video podcast about his experience of living with dmentia, now up to his 70th. This one was focuses on the difficulties of a diagnosis, and stigma. Thank you Peter for giving us permission to share your 25th video here.
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.
The #DAI#Hello#WAM2018 blog series have been very popular, hence we intend to continue them at least weekly for some time to come. We have many new members joining DAI each week now, and want to continue to give everyone with dementia a platform to have a voice, if they want one.
As is it important to talk about progress (or not), today, therefore we begin October with an article by DAI member Professor Peter Mittler. Peter says #Hello with a reflections on our human rights.
Peter has worked tirelessly for most of his professional life for the rights for people with disabilities, and for the last few years has devoted his attention to the rights of people with dementia, sharing his extensive expertise and knowledge, and is friendship and commitment to the 50 million people currently living with dementia. Thank you Peter. We are humbled and honoured to have Peter as a member, and thank him for his continued focus on the rights of us all; DAI is deeply indebted to you.
Hello, my name is Peter Mittler
MY REFLECTIONS ON OUR HUMAN RIGHTS
My human rights journey began shortly before my 7thbirthday when Hitler’s army marched into Austria and street thugs wearing brown shirts and swastikas arrested thousands of Jews, closed their shops and businesses and stopped me and other Jewish children going to school.
My story is told at length in a memoior, Think Global Act Local: A Personal Journey (2010). It now needs a new title: Act Local Think Global because the responsibility for taking action on human rights rests with each and every one of us.
The United Nations Organisation was founded in the wake of the Holocaust and the loss of hundreds of million lives in World War 2. Under the inspirational leadership of Eleonor Roosevelt, the UN produced the Universal Declaration of Human Rights in 1948 for everyone on the planet. That Declaration provides firm foundations for the legally binding Conventions on the rights of specific groups who were experiencing inequalities and discrimination: women, children, ethnic minorities and last but not least disabled people.
Although the UN has officially recognised people living with dementia as persons with cognitive disabilities, governments have not included us in the implementation of the CRPD or other Conventions. This is nothing short of systemic discrimination which will only end if we insist and persist in the demand for our human rights on the same basis as people with other disabilities.
The UN supports us but our governments continue to ignore us. Dementia Alliance International and Alzheimer’s Disease International helped inform the World Health Organisation’s Global Action Plan for a Public Health Policy in Dementia (2017). It is a good plan but it is not clearly based on the General Principles and substantive Articles of the CRPD. Furthermore, very few governments have acted on it.
There now needs to be a campaign to use the CRPD in planning supports and services in the wider context of the UN’s Action 2030 Sustainable Development Goals.
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.
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 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.
On Day 15 of our #DAI#Hello my name is blog series for World Alzheimer’s Month #WAM2018, we feature long time pioneer advocate Carole Mulliken from the USA.
Carole is one of the founders of the Dementia and Advocacy Support Network International (DASNI) and is also a board member of Dementia Alliance International (DAI). She co hosts one of DAI’s Peer to Peer Support Groups on Friday afternoons.
We are honored Carol shares her extensive wisdom and experience with us; she is a shining example of living positively with dementia, for well over 20 years.
HERE FOR A REASON
Hello my name is Carole, and it seems, I am still here for a reason.
Although I was not aware of it, the surgery had been long and difficult. I learned later that it had been a quintuple bypass surgery. I was told the heart attack continued stubbornly for so many hours, they weren’t certain they could perform the operation I needed to survive. I’m glad I missed all the drama.
Later, in the telemetry unit, a vivid red, heart-shaped pillow with a picture of a heart and all its supporting vessels was presented to me, as if to congratulate me for something. I remember thinking the congratulations belonged to the surgeon.
My husband had died a few short months earlier, and to be honest, I wasn’t all that sure I wanted to stick around myself. But all these hospital people had gone to such great lengths to assure that I could stay alive, It would seem ungrateful and rude to tell them that.
Some of the nurses knew what a challenge my surgery had been. Their eyes would grow wide and they’d solemnly shake their heads as they told me,
“You are here for a reason,you know. You are here for a reason.”
I waited for the them to reveal the reason. I had already been disabled for ten years and now would be living completely alone, following major heart surgery. One of the cardiologists had told my family I would never get out of a hospital bed without an assist. I couldn’t imagine what reason I might have for continuing to exist. I nearly asked one nurse what the reason was, but she had patted my hand and scurried off to her next task. I hugged my puffy heart pillow and slid to sleep.
Taking my heart pillow with me, from the hospital, to the skilled nursing facility, back to the hospital and then to assisted living, I spent six months under others’ supervision. I couldn’t walk anywhere without a physical therapist hanging on me with a gait belt. Independence and autonomy were all I struggled for. After six months, when the physical therapist finally declared me an “Independent Community Ambulator,” I felt better than when I had gotten my driver’s license at 16. Liberty at last, to ambulate anywhere in the community!
Then I realized I needed to know the reason or purpose for which I would ambulate freely.
Twenty years ago, I had written out my mission in life, my purpose for being, in a journal. I unearthed it to see if it might help me.
“I believe my mission in life is to discover, continually develop, and use my unique, God-given gifts to help those in my circle of influence to learn and grow in knowledge, skill, and character. I hope though love, clear communication, and faith in others, to assist them in discovering and developing their own unique talents and abilities and find the personal missions in their own lives.
I believe people are essentially good, that they have an inherent drive to grow in positive ways toward their own uniqueness as God intended; that human diversity is the medium in which adaptation and endurance flourish; that life is growth and change – a process with both polarities and cycles, and that life is fundamentally good.
I believe that paths to one’s personal mission are many, that knowledge of it is equally in the subconscious as in the conscious. Quietude, reflection, reverie, and prayer are all means of discovering it. I continually learn how to better reach those states and help others to do so as well.
My personal gifts of intelligence, expressiveness, creativity, intuition, and a capacity for reflection manifest best in conversation and writing. I strive to provide for others the opportunity to reflect and make choices about their lives in a considered way – in contrast to the hectic and driven ways in which we now live. I strive to be the kind of person in whose presence others the world as full of possibilities and themselves as valued, creative, and unlimited in potential.
I believe that quality education increases the breadth of choices one has and is inherently worthwhile. I strive to be increasingly more a product of my choices rather than my conditions and enable others to do the same.
I will develop an attitude of gratitude, practice a belief in abundance, and approach conflicts with a win/win attitude, accompanying negotiation skills, and choosing only love.”
Back then it seemed to fit me. For many years, I loved educating teenagers, so they could begin their adult lives. When I was disabled and no longer able to teach in a public-school classroom, my purpose became helping recovering addicts reestablish their lives. I helped people newly diagnosed with dementia at an online message board. That was only a different type of student and a different platform. I loved doing that for twelve years. When I was offered a chance to teach English again, this time online for a community college, my original context was restored, and I felt like my old self. I worked from home and didn’t even need to ambulate. But then the community college system decided they would no longer hire adjuncts from out of the state, and 250 of us lost our jobs with the stroke of a policy pen. I had lost a context in which to pursue my life purpose. I was ambulatory, but I had nowhere to go.
Worse, my belief in abundance was challenged by considerable loss of intellect and creativity following a series of mini-strokes. Holes appeared in my brain where previously abundant brains cells had been. Brain scans proved it. Oddly enough, I still had the drive to create new things, but had no ability to accomplish them. Furthermore, I still “felt” I was brilliant but knew I was profoundly disabled in certain areas. An analogy I used was that if I were talking about running rather than thinking, I had one leg as long as Wilt Chamberlain’s and the other cut off mid-thigh. As a runner, I couldn’t even get myself to the track. It seemed my brain couldn’t make it to workouts either.
Thinking about Thinking
What I was doing just now is called “meta-cognition” or thinking about one’s thinking. If that sounds to you like a weird kind of navel gazing, that’s probably because you have a capable adult brain. Children, and particularly children with learning disabilities, are taught meta-cognition to help them become conscious of their thinking and more aware of their strengths and of strategies useful to their own learning.
People with dementia have newly acquired learning disabilities. When taught to think differently, they can learn to value themselves once again. It’s a new kind of special education for adults.
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.
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.
On day six of #DAI’s #WAM2018 series of #Hello my name is blogs, we share one of our USA members, Dr David Paulson’s story of living with dementia.
David Paulson was raised on a traditional Midwestern farm in the U.S. Fascinated by the human language processing, he later earned a doctorate in Spanish Applied Linguistics from the Univ of Illinois.
He was subsequently appointed to teach English Composition at the Univ of Barcelona in Spain, going on to spend time in 14 of the 19 Hispanic countries. He has taught Spanish, French, English as a Second Language, The U.S. Constitution (in English and Spanish) and G.E.D. prep for over 30 years, traveling widely with students from the Univ of California, State University of Minnesota and Concordia College systems. David has recently retired.
Thank you David for sharing your video story for this series to help us raise awareness. David is very actively involved in DAI, is a member of one of our USA peer to peer support groups and will be hosting our new Spanish-language peer-to-peer support group starting October 9, 2018.