Category Archives: Younger Onset Alzheimer’s disease

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.”

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

Hello, my name is Tracey Shorthouse

Image source: Tracey Shorthouse

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.

Tracey Shorthouse © 2018 

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

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

Welcome to 2017 and Happy 3rd Birthday to DAI!

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Believe it or not, DAI has recently turned three! It is usual to say, Happy Birthday so this blog is doing just that! The seven co-founders of DAI who set up this organisation on January 1, 2014, could never have imagined, in our wildest dreams how much progress we would have made in such a short time, and although three of our co-founders are no longer with us, we believe they would be very proud of what they dreamed of and started.

Ironically, most of us forgot our own birthday, and therefore made zero noise about it on the day, but we are however, celebrating it with our members and families at our online Café Le Brain on Tuesday January 17 (USA/UK) / Wednesday January 18 (AU/NZ). Login details have been emailed to members.

We are also very pleased to be able to report that very soon, you will receive DAI’s first formal Annual Report, along with our other news, plans and dreams for 2017, in our first e-Newsletter for the year.

Frankly, it is totally unacceptable that the 2015 conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries was that “Dementia receives the worst care in the developed world,” This is one reason why we are such passionate advocates for real change, not just more rhetoric.

We may be seen by a few as too critical of some things, or as disruptors, as we often question the status quo. However, if care was not so poor in so many countries, as per the conclusion above, we would not have to.

Our greatest aspiration, is that we can  work together, and that it will always be “Nothing about us, without ALL of us”. We hope that local, national and global groups of people with dementia and the many not for profit and other advocacy organisations can all work together, in cooperation and in harmony, towards the same or similar goals.

As we quoted on Day 1 of Dementia Alliance International:

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. (Margaret Mead)

We are all working towards the same goals, which is to improve the quality of life for all people with dementia and our families; as a global organisation, DAI has a responsibility to work hard towards supporting that gaol in all countries around the world. If all the groups of people making a difference from every corner of the globe, all work together, imagine how much more powerful we could be…

[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.

World Alzheimer’s Month 2016 wrap up

IMG_4978We have attempted to shared as many #RememberMe stories as possible for World Alzheimer’s Month 2016, all either highlighting some very personal experiences of living with dementia, or some of them about some of the  brilliant local, regional, national or worldwide advocacy some members are involved in.

Whether it is global, or simply helping the person next door, it is important work. Sharing a personal story via a blog, or at you local town hall or church, is just as important as making a video thy is shared more publicly. It is not a competition of who is doing more, or of the best.

There are simply not enough days in World Alzheimer’s Month to share them all, which also means we have many members stories to continue sharing over the next few months! What we did was to sent out messages to members to send in their stories, and the ones we have shared this month are simply from those members who responded. We have not even been able to add them all during September, but will endeavour to do so over the next few weeks.

That does not mean, of course, that there are not many other brilliant stories of excellent advocacy to share. Less than 5  years ago, there were not so many people with dementia actively working so publicly as advocates; today, we could (if we had the funds to employ someone!), write a daily blog every single day of the year, as so many are all over the globe are now doing wonderful things.

People with dementia have been sharing their own stories, in their own ways, of ‘Living with dementia’ for some time now. Each person’s way of raising awareness of dementia is important, whether it is a blog here or elsewhere, an article in a magazine, an event of some kind, a documentary or at a conference.

And all of these stories or advocacy work should be shared widely; this is in part what advocacy means.

We all have really important issues including reactions of close family and friends, coping with disability due to dementia, and even issues such as stigma, isolation, loneliness and discrimination to share, but also there are many stories of living well with dementia, in spite of it. These are equally as important, and just as important, are the events which may have limited or broad outreach, as raising awareness is.

So to end our series of daily blogs for #WAM2016 #DAM2016, we are highlighting a few things our members and others have been up to this month.

Wendy Mitchell, Jennifer Bute, Chris Roberts, Keith Oliver, Larry Gardiner and others in the UK have been involved in a documentary being made for Japan out living with dementia.  Wendy lives in York and writes a great blog, including this one about having the Japanese film crew in her home recently. DEEP and YoungDementiaUK have been very include wiht a lot of activities this month as well, including hosting a conference.

There have been so many conferences in so many parts of the world this year for #WAM, we would need to write a book to cover them all. Nigeria perhaps was the most important one of all, as the less developed countries are needing so much more support to raise awareness than the developed countries; in fact, even for people to get a diagnosis is a major concern for them!

Chris Roberts and his wife Jayne and daughter Kate from Wales had a BBC documentary made about their story of dealing with dementia, and it was great news to read on Facebook it has been picked up by an agency for global distribution. Chris has also been nominated as a finalist in the National Dementia Care Awards and we wish hm luck again this year.  You can view Chris’s documentary here…

Other members have been busy as well, and we celebrate again the prestigious Inaugural Richard Taylor Memorial Advocates Award won by Mick Carmody this year.

Some of our Aussie members such as Eileen Taylor and John Quinn and their care partners have been busy including working on a Dementia Friendly Community project. You can see a video of John Quinn talking about living with dementia here. Edie Mayhew and her partner Anne Tudor have also been very busy in Ballarat working on a campaign in their home town of Ballarat called Bigger Hearts.

It is not possible to cover everyone’s stories or activities today, and if we headed to America and Canada to give a preview here today, it would take too long to write, let alone read!

Susan Suchan though, has been involved in a documentary of her life and what it is like having dementia, and in particular living with the condition known as Primary Progressive Aphasia.

You can read more about Susan’s documentary here…

In our final blog for World Alzheimer’s Month 2016, we apologise to those we have not (yet) recognised for their advocacy or other efforts, but we hope you will think about sending us your stories for future blogs here.

It has been a very busy and productive month all over the world as we collectively raise awareness of “Dementia from the Inside Out”!

Myrna’s story: Excelling for as long as possible

Myrna Norman
Myrna Norman

We are delighted to share another story from one of our members about what is is like living with a diagnosis of dementia. Although World Alzheimer’s Month 2016 #WAM2016 is more than half way over, we have many more to share with you as the month progresses.

Thank you Myrna.

Ps. Next week, on World Alzheimer’s Day 2016, we also announce the winner of the Inaugural Richard Taylor Memorial Advocates award; it continues to be a busy and exciting month!

This is Myrna’s story…

“When the GP informed me of my FTD diagnosis, shock was my first emotion.  Despair, disbelief, and downright disengagement  followed until my decision to educate my self, reach out to those who could mentor me and get a grip, literally.

Losses included the inability to competently do my company’s books, getting lost when driving, making decisions without forethought, and real spacial difficulties.

But hold on to your hat, some gains have also impacted my life.

My decision and my drive to direct my energies to participating in anything and everything to educate, to empathize, to empower those touched be dementia, seemed to take a life of its’ own.  To offer my personal experience to anyone who may listen enabled me to join DAI, Alz Society, Purple Angels, while spreading the good word.

Having an ability to submit to WHO a simple sentence cheered my soul.  The inclusion into online support groups, speaking to Richard Taylor and others working so hard on our behalf, are just some highlights.

Now an Alzheimers diagnosis as well to cope with or to excel with.  I choose to excel as long as possible.  Speaking to Care Aids at their graduations, taking part in forums and local fairs allows me to meet my drive to educate.

Of course, I have many days that getting dressed is an effort that I cannot meet, staying awake for full days seems impossible but always the folks in my life encourage me, understand me, and give me the space and the understanding to Do It My Way.”

With love
Myrna Norman

Veda Meneghetti’s story about dealing with dementia

Today for our series of daily World Alzheimer’s Month 2016 blogs #WAM2016 #DAM2016, and in the theme of #RememberMe we are highlighting one of our members, Veda Meneghetti who lives in Gerringong in NSW, just south of Sydney. Veda is a member of the DAG’s, an integral part of the now world recognised Kiama Dementia Friendly Community Pilot Project, made this video a couple of year ago, her story of living with dementia, which includes her singing to a background of many of her own photographs.

Veda joins the weekly support group in Australia occasionally, and also the Aphasia support group we host monthly. Once you meet Veda, it is almost sure  you will not forget her. Thank you Veda (and her partner Lynda) for making this available to us all on YouTube.

 

 

 

 

World Rocks Against Dementia (W.R.A.D)

One of our members, Norrms Mcnamara is a global advocate for dementia, and as a man from the UK also living with a diagnosis of Lewy Body dementia, he has been very active in working to help reduce stigma of dementia. March 19 is his World Rocks Against Dementia (W.R.A.D) day, and you can hear him passionately invite you to become a part of it. Norrms is also co-founder of The Purple Angel awareness campaign. Congratulations and thanks Norrms for your hard work for all people with dementia Normms.

Thoughts on dementia by the late Dr Richard Taylor

Screen Shot 2015-07-28 at 10.18.21 amThe late Dr Richard Taylor, a founding member of Dementia Alliance International (DAI), impacted the lives of literally thousands of people around the world. Whether it was a person with dementia, a family care partner or professionals, his web was huge.

For our new members, I felt you may also benefit from reading them; I found the following two excepts on Dr Google not too long after my diagnosis, and recall feeling like they almost literally ‘saved my life’ from the downhill spiral of Prescribed Disengagement®™. I have not doubt others who knew and loved Richard, and still miss him greatly, will also enjoy reading words from his early days after the early days following his own diagnosis of younger own dementia.

Finding the right words

After a lifetime serving people with mental illnesses, writing helps this psychologist and Alzheimer’s patient make sense of his own mind.

By Amy Novotney
Monitor staff
Print version: page 24

For more than 40 years, Houston clinical psychologist Richard Taylor, PhD, helped troubled teenagers gain control over drug and alcohol addictions and curb suicidal thoughts. Today, he serves a new troubled client: himself.

In 2002, neurologists diagnosed Taylor, then 58, with “dementia, probably of the Alzheimer’s type,” and for about three weeks, the psychologist cried every day, he says. But rather than join the nearly 40 percent of people with Alzheimer’s disease who become clinically depressed, Taylor began writing about his fears-and triumphs-as a way to “gain control over what was happening between my ears,” he says.

“Writing became my therapy without a co-pay,” Taylor recalls in one of 82 essays he wrote for his book “Alzheimer’s From the Inside Out” (Health Professions Press, 2007). “I wrote to reassure myself that some of the old me was still there, because I was in transition in ways no one seemed to understand.”

His narratives address common questions such as “What is it like to have Alzheimer’s disease?” (Answer: like he’s looking at the world through his grandmother’s lace curtains) and his fears and concerns for an uncertain future. And while a piece that would have taken him 10 minutes to write pre-dementia often takes him 10 hours these days, the work helps Taylor better understand himself.

But it wasn’t until he shared one of his essays with a friend-also diagnosed with early Alzheimer’s-that Taylor realized that others with the disease shared his concerns, and he decided to take his essays mainstream. Since the book’s publication, Taylor has learned that he isn’t the only person with Alzheimer’s disease to conclude, after one too many failed attempts at buttoning his shirt correctly, that the shirt was “broken,” as described by his granddaughter in one essay. Nor is he the first to find that his mind has been full of “puddles” since the “tsunami of forgetfulness” cascaded through his brain. But Taylor might be the first to say it so eloquently.

He’s now a public advocate for the more than 5 million Americans diagnosed with Alzheimer’s disease. He speaks nationally on behalf of patient involvement in treatment decisions and edits a quarterly newsletter for people with early Alzheimer’s and their caregivers.

Having sat on the clinician’s side of the couch himself, Taylor doesn’t hold back in his plea for help from his former profession. He says he’d like to see psychologists get more involved in counseling and treating people with Alzheimer’s, especially in the disease’s early stages, and move away from viewing advanced patients as half empty.

“We’re always a whole person in our own minds,” Taylor says. “Psychologists should be supportive of people’s wholeness-their all-rightness.”

Is this the end of the beginning or the beginning of the end? Print version: page 25
Excerpt from an essay by Dr. Richard Taylor

“I am scared I am running out of usable time. Usable in the sense that I am using it now. I know I am not at the same level of general competency this January as I was last January. I am more dependent on others for assistance in performing the daily activities of living my current life. Clearly I could not keep this pace of activities without my spouse cleaning up behind me, reminding me to do this or that, asking if I wanted to do this or that. Taking care of me when I can’t, and helping me to take care of myself when I need help. Her patience is both generous and essential.

I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when or how the bad ones will come, except when I am very tired. Sometimes I am aware I am floundering and cannot seem to hold myself together. It is strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something and not have a clue as to what it was. Most dangerous for me are the moments I do not understand, but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is I do not know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and did not find out for three weeks. Can I do this? Of course! When I really did not understand what was being asked of me, and I just said “yes” for reasons that only Dr. Alzheimer knows.

Tie these all together; multiply them by 25 and you have an insight into my days. There is of course lots of time between the events, when I cruise along acting, and sometimes thinking like there is nothing wrong, until SPLASH-another glass of ice water in my face, compliments of Dr. Alzheimer.”

Don’t forget, if you haven’t already you can register here for Dr Al Powers Webinar  Living with dementia: new perspectives next week.

 

Editor: Kate Swaffer

Veda Meneghetti: a story about dealing with dementia

Following on from last weeks blog which was a short précis of the conference in Manila, I was thrilled to be able to show a short video of DAI member Veda Meneghetti: a story about dealing with dementia, as part of my Dementia Friendly Communities presentation during the DFC workshop on the last day. 

Veda, supported by her partner Lynda,  is a member of DAI and the Kiama Dementia Advisory Group, and part of the Kiama Dementia Friendly Communities Pilot Project. The round of applause was brilliant, and Veda and her partner Lynda should be very proud. You can see it here… Thanks you Veda for allowing us to showcase your story.

 

From lab to home: AD in the 21st Century

 

Screen Shot 2015-11-21 at 5.17.04 pmThe last three days I have been representing Dementia Alliance International at an ADI Regional meeting and Philippine Neurology Association conference in Manila. In fact, getting here at all was a major challenge, as due to the terrorist attacks in Paris, and Mr Obama and other heads of countries being here for APEC, security was really increased, and the airport cancelled for all flights for over 12 hours, of course, on the day I was to depart from home. On top of that, there have been bushfires and a heatwave back home, with catastrophic bush fire warnings, and we have been unable to go home earlier than we initially booked!

Anyway, the hospitality in Manila has been exceptional, and the friendliness and hospitality of the people here truly spectacular. The dinner last night was a highlight, with all regions of the country putting on a performance, including the neurologists and other medical doctors. It was extremely competitive, and very entertaining.

The conference itself was perhaps more for neurologists, as it was hosted by the Philippine Neurology Association, and many of the speakers presented the scientific data and pharmaceutical side to dementia, but it was an important step for DAI to be represented here, and especially to encourage them to include people with dementia in their programs in the future.

After the Dementia Friendly Communities session today, which I presented at along with five other presenters from the region, including Japan who started this movement about 20 years ago, it was enlightening, and we all learnt a lot from each other.

The thing I am most pleased about, is that DAI will be able to support people with dementia in the countries represented here, such as India, Indonesia, Hong Kong and Singapore, and though this channel of support for each others work, we can give a stronger more global voice to people with dementia.  We have had our first support group, for people with dementia in Nigeria, and I foresee there will be many more to follow all over the world. Mick Carmody, our support group facilitator and host and also a fabulous chap and poet, will certainly have a lot to get him our of bed every single morning!!

There has been a lot to take in, and it has been very tiring, but I will write up a full report especially on the DFC session today, for another blog.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015