Tag Archives: Stigma

Alzheimer’s from the Inside Out, by Dr Richard Taylor

It would have been the late Dr Richard Taylor‘s birthday today (perhaps tomorrow if you are in the USA), and to honour his memory, and his influence on the lives of so many people with and without dementia. we are re-posting a video of him speaking at the first ADI conference DAI members attended, in Puerto Rico in 2014.

Alzheimer’s from the inside out

Watch and listen at the 53 second point of this video…  Richard talks with sincerity, but also with some cynicism about why he believed he was offered an award and invited to speak at the awards event. This is still happening to most people with dementia  today.

https://youtu.be/il9f_YnOZlM

His speech notes are on the original DAI blog published after the conference

So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

The global advocacy movement of people with dementia speaking out, and the many books, articles, and blogs or stories written by people with dementia globally certainly highlight this. Those of us who appear publicly as speakers or are involved in our communities in other ways and who appear to be ‘living well with dementia’ but who have also been formally  diagnosed with dementia, are often being accused of faking having dementia…

This has become systemic, and could easily be considered a form of bullying, and it must stop. Ignorance is no longer an excuse. One of DAI’s new board members Brian Le Blanc , has written two powerful blog posts about his own personal experience of this recently, and which we are sharing here today  as we lead up to the ADI Kyoto conference next week, as a reminder that whilst people are being diagnosed earlier in the disease process of dementia, it is completely logical they will not act or look as if they are in the late stages of the disease at the time of their diagnosis.

Part 1: So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

“Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?

First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???

  • I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
  • I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
    by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape?  Did I fake remembering the 4 words I was told 5 minutes ago?
  • Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
  • I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?”

Follow the link to read the full article by Brian Le Blanc, first published on his website on April 11, 2017.

Part II: So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

“PART II (hey, that rhymed with ado! It’s amazing what a person with Alzheimer’s can do!)

I will start with a quote from the Invisible Disabilities Association

‘In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness, and value, no matter what hurdles they may face.

In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.'”

Follow the link to read part 2 of this topic, by Brian Le Blanc, first published on his website on April 14, 2017.

Finally, if you have not watched this DAI Master Class yet, please take the time to do so. You will learn a lot, and hopefully if you have ever accused someone of faking it, it will change your mind and heart.

“Why do you not believe me?”

By Mary Beth Wighton, Person diagnosed with dementia, Chair of the Ontario Dementia Advisory Group and member of Dementia Alliance International. First published: July 2nd 2015. Thank you Mary Beth forgiving us permission to share your experience here.

When I say I have dementia, there is usually a stigmatized response: “Gee you don’t look sick.” “You are too young to have dementia.” “I’m not good at math either.” “Everyone gets forgetful.”

What I find surprising is that some of these stigmatized responses come from people who know me, have direct contact with me and are recipients of my advocacy work. It is as if they don’t believe I have a disease that has no cure and ultimately will die from. One such person said that I “…can walk and talk so I’m fine.”

What else do I need to do in order for all people to believe me?

Perhaps the better question is why do I feel the need to convince them? And why am I disappointed, hurt and sometimes angry with them that they don’t?

Rest assured I have received a diagnosis of probable Frontemporal dementia. I have been through the gamete in seeing doctors, tests, and been under high-scrutiny. My brain has been picked and prodded at. I’m so sick of it, that I have told Dawn I’m done with doctors and don’t want to see and more. I will do the basic requirements necessary for me to retain my personal insurance. That most likely means a yearly visit to the world renowned brain hospital Baycrest to see the Head, Division of Neurology, Dr. Morris Freedman.

I’m reminded of the apostle “Doubting Thomas” who refused to believe that the resurrected Jesus had appeared to the other apostles until he could see and feel the wounds of Jesus.

Skeptic, why do you not believe I have dementia?

I am unable to show you my diseased neurons that are not firing on all cylinders. I am not alone in this as most people having dementia experience this stigma. I am fortunate in that I have an early diagnosis. This has enabled me to have the time and ability to learn about my diagnosis and prepare accordingly.

Dementia does not mean: I am old and always forgetful.

Skeptic, I:

• am a person

• have a diagnosis of dementia

• have great long-term memory

• struggle with short-term memory

• struggle with making decisions

• struggle with math

• struggle with understanding humour

• struggle with understanding complex movies

• struggle with word finding

• am not as compassionate to others as I once was,

• take a great deal of medication that makes me tired (not lazy), and

• I am loved by many.

Reader, take the time to understand dementia. It doesn’t take long. Educate yourself.  I would hate to think that you too are a skeptic.

Wise words from the heart of Richard Taylor

OLYMPUS DIGITAL CAMERAAs the editor for DAI, this week I am posting a blog written by Richard Taylor PhD, insightful as always, and full of honesty, bravery and wisdom. I personally have been a subscriber to his newsletter, which has not been written so regularly since he was diagnosed with throat cancer over 18 months ago, and I know I have missed his writings. I suspect he has missed his writings! Thank you for sharing yourself with us again Richard.

Richard speaks:

Hello, within the past couple of weeks I have stumbled across a new pocket of clarity of thought residing somewhere between my ears. I don’t know where it came from, I don’t know how long it will be here, but I do now realize I can’t think things through, I just sit down and start up my old selectric typewriter and I type. Formerly, I mulled over ideas, tested them against what I knew, researched my conclusions. Now I just sort of put a clean sheet of paper into the machine and start thinking out loud.

It feels sooooooooooooo good, to have some of my mojo back. Maybe it’s the new vitamin B-12 shots at work, maybe, maybe, maybe. I am trying to enjoy it, use it while the door remains open. I am now writing lots and lots, responding to other’s writings lots and lots. Most times I am eventually clear in my message/thoughts/position. Sometimes I realize I am not.

Along with a new found spontaneous focus/attention has come an ongoing nagging awareness that everyone does not share my sense of urgency in addressing the absurd/counterproductive/dehumanizing/neglectful manner through which the world is responding to the fact that half the world is now much older than the other half. And with that fact comes a divide in priorities, spending, political conversations, and from my point a view a very troublesome divide in how we treat/respect/appreciate/understand the respective other half of the population. Technology does not seem to have helped pull us together. Governments, mostly still populated by one half of the population, but increasingly elected by the other half, seem to respond to divide by dividing us more, and more and more.

But, as usual I digress/wander/repeat myself/reveal myself.

The sense of urgency inherent in realizing the dehumanizing stigmas that are currently being promoted by the very organizations who goals should be to re-humanize dementia has been refocused on how quickly can we find a cure, not how quickly can we improve the lives of folks living with the symptoms of dementia. Great minds, great government’s, great universities, great NGOs, giant drug companies who all are driven by their own needs to survive and holds lots of conferences in nice places and make speeches about going to war to defeat dementia – each and mostly all of these forces have aligned with each other to raise more money and support to “cure” dementia (actually Alzheimer’s to use their word). This wrong is wrong in oh so many ways, I can’t count them.

But back to yours truly and the reason I write this. I need to take some time away from the chase, away from the darkness, away from the dark forces. I need it for myself to fully enjoy these moments of clarity. I need it to make the semi annual readjustment to the fact that my own sense of urgency is not shared by many, many others. That is not to say we don’t agree of goals, it’s just the objectives/the strategic planning/the time lines/the willingness to invest more/to readjust priorities/to balance between thinking globally and acting locally/the devil that resides in the details of living life to its fullest and its best – these details need to be addressed, now. We need less “think tanks/groups/pieces” and more action plans. We need more evidence and reasoning, and less visioning.

Yes, awareness is spreading even as the darkness is promoted. Self advocacy seems to reside in the hearts, minds, feelings, and utterances of more and more of us living with the symptoms of dementia.

Yes, on the whole the world and some individuals are better off now than they were five years ago (speaking of folks living with dementia).

Yes there are pockets/moments/places/people/and more and more mostly smaller organizations who understand us, get “it.” In the long view of things, in the long run, things are still mostly slowing down in the wrong direction and/or speeding up in the right direction.  It is fitful progress subject to lots of changes and pressures. For myself I am convinced there is not enough progress to make much, if any difference in my life. Perhaps in the lifetimes, the demetia times of my grand children – but it is only a perhaps. The current steps in the right direction are matched almost exactly by stronger (if fewer) steps in the wrong direction.

To say, to feel, to act like there is no need to hurry, no need to keep building pressure, resisting the forces of resistance is ill advised. We can quickly lose our gains with one set of election results, with one distracting international event, with a thousand other distractions and priorities. We shouldn’t have to compete, but we do.

I’m taking a month off/away/observing/writing/hanging on – preparing for what will probably be my last hurrahs come Fall and next Winter.

Thanks for wandering around with me and this posting. Back soon – with more.

Richard.

Copyright: Dementia Alliance International and Richard Taylor PhD
Editor: Kate Swaffer