Tru here on Sunday, April 19. On Friday, I finished my first public speech in many years, on subject very important to me; Value of PWD Lived Experience as Contributor towards Dementia Friendly Community. Husband took these pictures as part of the video which we hope to post soon. Saturday there was a meeting, and …
Realized this morning that I have just passed one of those tipping points. Until this ADI Conference of 2015, I have thought of my “team” in advocacy efforts as only my friends in Dementia Alliance International and my Dementia Mentors “family” (of course, plus our good friend Dr Shibley Rahman). Looking back, some conflicts of ideology with care-partners had created a bit of an “us-vs-them” mentality.
The closer contact with individuals during these conference days has changed that. Except for yesterday’s ADI-DAI meeting, the most influential effects have been “chatting” and meals during after-hours contacts. But actually the largest effect was from the “teamwork” atmosphere during the meeting between the DAI members present, ADI Staff members Marc Wortmann and Jane Cziborra, and ADI Chairman-Elect Glenn Rees.
As usual, I have little memory of words spoken, but much memory of the feelings engendered from the meeting. The main thing was the feeling of an older brother (which I have never really experienced as an eldest child). The feeling of independence, alongside inter-dependence was actually quite profound. As a speaker, but especially as a DAI member, thank you for the opportunity to participate in that meeting. It created a paradigm shift for me. Also my thanks to Workshop chair, Mike Splain, for his assistance in my speech preparation.
Truthful Loving Kindness
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Still visiting this beautiful Land Down Under & will further report on my adventures from security of my PC when I return home. Love to all.
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Enjoy you vacation! Watch out for falling houses and flying monkeys! I know this conferece was stressful on you and it is so wonderful you have the time to break free and enjoy all the sights! Rest easy. your message is getting out. It may take some time for it to “perculate” but others are in your camp and promoting those new ideas with absolutely no “axes to grind”. Now, it’s all about that “Wouldn’t you like to fly ~ time! Sincerly Cecil
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Yes; suspect I had a slight stroke & that was why I passed out. Hit my head when fell & spent day in Emergency Room. About 20hours later felt fully awake. Long sleep. Thanks, Cecil. So great to actually physically meet you ❤
So proud of you for making the effort and so happy that you are able to enjoy this trip! Live, learn and report back to us! Miss seeing your smiling face in chats.
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Let me be upfront here. I am not one of your fans. However, I do follow the U.S. DAI organization and wish it great success.
That said, please tell me why you think you are a representative for those of us who DO have a confirmed dementia diagnosis and why you deserve to speak on behalf of us as an ‘expert in living with dementia’?
I see no formal educational credentials that give credence to your right to speak as a dementia expert. I see no career experience that lends itself to advising someone with dementia about how to live with their disease. I see only a self-serving opportunist. I see someone who likely got a subsidized ‘vacation of a life time’ (your words) in Australia and further self-promotion.
I have read your blogs, your postings and stories. I see absolutely no evidence of a confirmed diagnosis of dementia. I do see someone evading the issue of a lack of diagnosis with a “waiting on a confirmed diagnosis” statement as if that makes you eligible to speak as an expert of living with dementia.
Furthermore, how is it you are a member of DAI? Its membership criteria states members are allowed only with a confirmed diagnosis of dementia. “Waiting on a confirmed diagnosis” and “dementia symptoms” do not meet the membership criteria.
According to your blogs, you state you’ve had cognitive issues since 2000. You’ve been to at least 2 major medical institutions, one (Stanford) of which apparently indicated you do not have dementia, a second one (Mayo) declined to review your case for dementia after reading your medical records. You’ve had at least one consultation at UC Davis which has yet to confirm your latest claim of LBD. Your subjective analysis of your declining reading level and occasional olfactory hallucinations is not a diagnosis; nor is a ‘tentative’ diagnosis by your local general practitioner.
It does not take 12-15 years of declining cognitive abilities and 3 major medical institutions to confirm a dementia diagnosis if you truly have dementia. Have you had annual neuro evaluations by a neurologist since 2000 that consistently show a decline in cognitive skills? What have your MOCA and MMSE scores been over the past 15 years? What do your brain MRI’s show each year when you are evaluated? Don’t tell me everyone is different and that dementia is only confirmed upon autopsy. If that were the standard measure, none of us would have a diagnosis.
You are a pathetic panderer of ego stroking, a fraudulent attention seeker. Please, take your little cut and paste newsletter, your self-promoting personal blogging and go find another cause to support. You do not belong in a population of truly ill people. You demean the purpose of DAI.
Hope you get it. Some sort of e-mail mixup ?
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