Rose Tyson, Dementia Bully

Naming the Shamer.

in my opinion,
there is a huge vulnerability in sharing our thoughts online, so we must have hard shell to deflect criticism.

Regardless of my efforts to retain a positive attitude and attempts to find worthy topics to discuss on my blog,
every time i receive one of these letters Blaming and Shaming,
i find myself spending an hour or two in re-evaluation.

Yes; this person is obviously a Bully, but that doesn’t necessarily mean they are always wrong in their conclusions.

PERHAPS she is right.

Despite my efforts to share from others, is this blog really self-promoting ?

Perhaps i really DON’T really have anything valuable to add to the conversation.

.
Obviously some folks feel that my blog is un-helpful and demeaning.
Is it worth the effort to write and SHARE my thoughts ?
Does it really assist folks now, or will it assist folks in the future ?

Is blogging really worth it ??

Online Bullying is becoming so prevalent that i have decided to begin naming names.
Rose was one of the first … and is also the most recent.

.

Rose Tyson (rose83616) began her negative comments with 8 paragraphs on 28 Apr 2015.
Excerpts are:
“I see no formal educational credentials that give credence to your right to speak as a dementia expert. …
I see only a self-serving opportunist. …
You are a pathetic panderer of
ego stroking,
a fraudulent attention seeker
.

Please, take your little cut and paste newsletter, ((she is referring to Dementia Symptom Perspectives))
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.” ((Dementia Alliance International))
— Rose Tyson on 28Apr2015.

Rose obviously still feels the same, as most recent from Rose
(now slightly different eMail since she leaves out one of the 6s, with rose8316)
are excerpts from 03Dec2018 (re my friendship with Susan Suchan)
“Seriously? You have to make Susan all about you?
Let me share something with you….you will never be in the same class as Susan or Dena.
Please stop trying to make people think you were their closest friend.

They walked the walk….you simply talk with no substantive knowledge about dementia.”
— Rose Tyson on 03Dec2018

(above is a treasured photo of Susan and me)

12 Dec 2018
… My guess is that you are mentally ill … Schizophrenia …”
— Rose Tyson 12Dec2018

and 25 March 2019
“… You add nothing new in terms of research or insight.

You have nothing to add …”
— Rose Tyson 25Mar2019

.

.*.

Several times i have mentioned conclusions from long-term psychological evaluation by medical doctor specializing in Psychology.
No; will NOT share doctor’s name to have her add it to the list of others she drags thru the mud in her latest rant.

Despite my efforts at positive perspective,
Rants like these usually undermine my confidence (and so writing abilities) for a time .
Rants like these discourage others who may wish to blog or share their conclusions or tips.
… This is the true dis-service for those with dementia, MCI, their core support persons, and others who would lend a hand
— or an encouraging word at appropriate times.

.

The collective knowledge
and caring spirit
of those who write and share their experiences
should not need to face this vicious criticism
for speaking their truth.

When i realize there is nothing positive in continued relationship with a Bully,
i regularly copy/paste to my “Negative Comments” file,
but then delete.
— i do not wish to get my friends agitated by trying to “protect” me …
and totally distract from the point of each specific blog entry.
That would be counter-productive.

For those wishing to start or continue blog-writing,
YOU are shining stars in the universe,
and i applaud your efforts.

— but watch out for the bullies (like Rose Tyson).
— Tru

.*.

Related Links.
Right-click on colored text and selecting “open in new tab”,
will allow you to return to this tab easily (at top of window) when you finish.
Remember, Links are on colored text, NOT the pictures.

Harry’s entry on Bullying >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/cyber-bullies/

Kate Swaffer >>  https://kateswaffer.com/2015/05/09/not-suffering-bullies/

Index of Other Contributors >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

List of other Bloggers >> https://truthfulkindness.com/links/

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is still Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Text Copyright © Truthful L. Kindness 2019Mar31. Tags are: blog, bullying, dementia, PLwD, social media, writing.

MyFreeCopyright.com Registered & Protected

((Previously, i had a notice here at base of each entry with announcement and Logo for HealthLine 2019 Best Alz Blogs.  To my surprise, after HealthLine contacted me in January with fact that i was included in 2019 Best Alz Blogs, then announcing it publically on March 18, ten days later they decided against including writers with Mild Cognitive Impairment, and removed this blog from their listing, leaving only one first-person perspective.  Now i am deleting each of those announcements of my inclusion on HealthLine Best Alz Blogs for 2019.  i hope they soon decide to include at least one other first-person perspective in their “Best Alzheimers Blogs”.)) >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

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17 thoughts on “Rose Tyson, Dementia Bully

  1. hi tru,
    I can’t imagine anyone saying those things about anyone let alone you!! you are truly both a guide and inspiration for me in my early stages of deterioration.

    like the budda has said (and I am paraphrasing) when you speak it should be truthful , kind and helpful. rose needs a little help.

    take care tru

    david

    Liked by 1 person

  2. Tru, it hurts my heart to see critics like Rose attempt to demean the efforts of those who are writing to help others. Rose appears to be very self serving. In our society she has the right to speak her mind but I always go back to the golden rule .. treat others as you would like to be treated yourself. If Rose enjoys being treated unkindly then she is truly giving what she gets. In my opinion bullies lack the ability to be kind because they have not been treated kindly. However, they have the power to overcome negativity which, I believe, would go a long way to allowing them to have a better outlook and in turn treat others more kindly. Bullies must enjoy being miserable else they would make efforts to better their outlook. So, let them wallow in their misery for that is what they will reap.

    Tru, your writing has truly helped me understand my hubby’s illness better and thereby given me the ability to be a more effective caregiver for him. Please don’t let the Rose Tyson’s of this world discourage you from helping those who suffer. You are an angel of light in the midst of the darkness. Shine on, dear lady. 🌞💖. Ellie Settle.

    Liked by 1 person

      • Oh, Tru, in winter that is the case but spectacular aurora borealis and stars you can nearly touch help that a lot:) And.. oh my!! The summers are glorious!! Long LONG hours of sunlight. Can sit on the deck at midnight and read without additional lighting:) 🙂 Skies start getting light around 4 a.m.

        You may detect from my first comment that I don’t abide bullies…I do maintain there is something missing in their life but we have the ability to better ourselves despite our upbringing or traumatic experiences. You have, more than most people I have become acquainted with, embraced positivity and light. I applaud you for it and can’t fathom why anyone could find fault with your unique brand of sunshine:) 🙂

        Liked by 1 person

    • I agree, and thank you so much! Haven’t felt this good for some time…it’s great to meet new friends who understand. It’s great to share and laugh online.

      Liked by 1 person

  3. ‘I do not wish to get my friends agitated by trying to “protect” me … ‘

    So, you put this post up here and on your Facebook page to call attention to yourself?

    I’m not easily intimidated so your attempt to shame me on line (this blog, your FB page) is a non-starter for me. You may say I am harassing you, but you are attempting to deflect my repeated questions about the falsehoods you continue to promote regarding your dementia status.

    You were rather selective with the words of mine you chose to put up in quotes here. You took my words out of context so that you appear to be the victim and I appear to be the bully. You deliberately fail to share the backstory of our exchanges because you are NOT TRUTHFUL.

    Your blog postings about your road with dementia symptoms and history are ever-changing. I believe you posted early on that your dementia was tied to a head injury from a former abusive partner, then another post later about Lyme disease causing the dementia, then Lewy Body, then MCI, then vascular dementia and so on.

    When people are diagnosed with dementia they are looking for and need information that is truthful, accurate and fact based. You fail on all 3 counts. Most people want to reach out and compare diagnostic paths and experiences with other diagnosed individuals. You, however, are disingenuous and evasive about yours and your story is inconsistent about how you came to be ‘diagnosed’ with dementia.

    No one is asking for your doctor’s name, only that you be honest about your lack of dementia diagnosis. Mild Cognitive Impairment is NOT a diagnosis of dementia and this has been brought to your attention multiple times, yet you persist in misleading others who read your posts that MCI=Dementia.

    Most individuals with dementia participate in annual neurocognitive testing to measure decline. You’ve never shared the results of any of your annual neurocognitive testing. Instead, you’ve seemed to measure your own ‘decline’ (such as using your subjective reading comprehension as a tool of measure) and present it as valid. That can be extremely misleading to others.

    I’ve seen others ask you (on your FB page, in support groups, in response to your blog posts) about your diagnostic path; what your defined diagnosis is; and you are quite evasive…. you’ve rejected the universally accepted and proven standardized testing protocols for dementia, stating that YOU felt your IQ was too high and your life experiences had given you a higher level of cognition that couldn’t be captured by formal education and therefore, the cognition tests were invalid in your case. You presented yourself as in a special class of a dementia person. There is no such thing. There are rare forms of dementia, generally genetic, but not ‘special classes’ of people with dementia.

    Speaking “truthfully”….Have you:
    1. shared that you were asked to leave at least one dementia support group after it was made aware that you didn’t have a definitive dementia diagnosis and that MCI was not recognized as dementia by the experts …i.e. medical professionals?
    2. shared that you have left multiple support groups when the questions about your dementia symptoms were questioned by various group members as doubtful?
    3. shared that you went to an international forum on dementia representing yourself as an “expert” in dementia when you didn’t even have a dementia diagnosis (except your self- diagnosed one) and no formal education in the subject matter to qualify you as an expert?
    4. shared with your readers that you self-diagnosed your Lewy Body “symptoms” which are based only on your reported statement that you had two grandmothers with Lewy Body/dementia (again, diagnosed by you, not confirmed by a brain autopsy)?
    5. shared the tests (and results) you underwent BY A NEUROLOGIST (not a GP) to determine that you actually do HAVE dementia?
    6. shared your subsequent annual neurocognitive testing scores done BY A NEUROLOGIST?
    7. disclosed to your readers that 3 major medical institutions have declined to diagnose you with dementia?

    You say you have had ‘dementia symptoms’ for 15+ years and no doctor has been able to diagnose you. Nonsense. You can’t have symptoms of dementia for 15+ years and be unable to get a dementia diagnosis if you really have dementia. Stanford University is pretty high up on the list of reputable medical institutions and if their neurology department says you don’t have dementia….YOU DON’T HAVE DEMENTIA!

    It makes no sense that you report you have had TIA’s, mini strokes, and years of undiagnosed illnesses and complications (which you state as having caused your dementia symptoms in various blog postings) but no neurologist has been able to diagnose dementia. No reputable general practitioner is going to let a patient go 15+ years with all the TIA’s, mini-strokes you report and not get to the bottom of the cause. If you are as intelligent as you think you are, you would have questioned their treatment of your symptoms and changed doctors years ago.

    It is true everyone is different with different rates of progression with dementia. It is true many dementia diagnosed individuals remain active and engaged for a long period of time; but the disease catches up with them, sooner than later. I’ve not seen anyone who has been reportedly dealing with undiagnosed dementia for 15+ years as you claim to have, still be functional, much less be bragging about how many hours per week they work on ‘their advocacy’ and blogging. Common sense dictates that if you’ve not progressed with dementia symptoms (even ‘slow progressing’ symptoms) in 15+ years…. YOU DON’T HAVE DEMENTIA!

    And…. all your various ailments….Lyme disease, Babesia, celiac disease, fibromyalgia, etc…. You have ALL those conditions AND dementia and you are still able to work all those weekly hours, participate in video calls, on line chats, blog, and travel? Nonsense. Not to mention, those are all conditions that have many symptoms mimicking other medical issues that do not result in dementia. Some of them are even thought by the medical community to be psychological, not dementia. Even if you have all those issues, surely you wouldn’t want to call attention to yourself to gain pity now, would you? Others might say you are a hypochondriac with a need to be the center of attention.

    Your flare for the dramatic …. comparing Lyme disease treatment to ‘undergoing chemotherapy’. I’m guessing just about any cancer patient who’s had chemotherapy would take issue with you on that one. That is just a disgusting comparison for you to make. Please explain to your readers how the antibiotics of doxycycline, amoxicillin or cefuroxime are REMOTELY comparable to the toxicity of Adriamycin, Cisplatin, or Vincristine to name just a few of the drugs used in chemotherapy?!

    You seem to need to present yourself as more than you ‘truthfully’ are. You are constantly promoting your ‘accomplishments’, your activities, your ‘intelligence’. Titles seem to be important to you…. Advisory Board (DAA), Assistant Administrator (Dementia Mentors), Manager (Dementia Symptoms Perspective….your own page) You were so out of your league with DAA. All those individuals with massive formal educations, advanced degrees and specialties in dementia….and you with your hokey picture with purple flowers in your hair and a blog about arts and crafts and chickens. You have no education; you had no high-level corporate career…. you were an ‘office manager’…for an unknown business in the central valley (not exactly a hot bed of intellectualism in that state) of California. If you were truly an advocate for dementia, you’d have gotten yourself formally educated in the subject matter. What designations of recognized skill do you have in the field of dementia care? Because if you truly had any, you’d be bragging about them here or on FB to further self-promote and call attention to yourself.

    Many people with dementia keep their dignity and don’t broadcast every little drama of their life as you do. They are the true ‘experts’ of living with dementia and they don’t have a need to overshare their life story in blogs, FB or personal memoirs.

    You have no idea what it’s like for a person with a diagnosis of dementia to live in a world that is disappearing; or they no longer understand. The hallmarks of dementia include inability to process words, retain information consistently (or at all), follow instructions or concentrate on a task. No one with a definitive diagnosis of dementia is going to understand the silly things you post about such as labeling tooth brushes or contents of a drawer to help them remember. Why? Because by the time they don’t recognize those items, they will have forgotten what the word means, how to read or much less what to do with a toothbrush.

    I think most dementia audiences are wanting to engage with someone who is credible, forthcoming and honest. If you are promoting yourself as an expert in living with dementia symptoms, they would like to have (and deserve!) a clear understanding of how you were diagnosed, why you think you have dementia, or if you don’t, why you think you are a dementia expert when there is no evidence of formal education in geriatrics or dementia in your past.

    You talk the talk of dementia with your charts, spreadsheets, videos and newsletters but the substance is not there…. the walk…. the credibility…the gravitas. You add nothing…you do no credible research, you follow no studies, you report no new information on the disease (unless you are cutting and pasting someone else’s work). You prefer to ride the coat tails of people who have been deep in the weeds of dementia…whether by true diagnosis or research contributions. You just post your own kitschy ‘discoveries’ that don’t do squat for anyone with a true dementia diagnosis.

    If you had been labeled with MCI 5+ years ago and since that time, had clearly shown consistent decline in neurocognitive testing, including MMSE and MOCA scores, your case would be stronger for dementia and you might have more credibility speaking to your ‘lived experiences’. For you to be presenting yourself to the dementia community as an expert is unconscionable and demeaning to people who are looking for a foothold in understanding this disease process. You need to stop this charade and nonsense.

    Like

  4. Rose,
    I guess if there was any one time to make your full comments public then it is here and now.
    You accuse me of deflecting your questions. I will not try to respond to most of this (actually, I haven’t even read all of it because my blood pressure goes up with frustration and anger), but will respond to your numbered questions. Then I am done. You ask “”Speaking “truthfully”….Have you:”” …

    1. shared that you were asked to leave at least one dementia support group after it was made aware that you didn’t have a definitive dementia diagnosis and that MCI was not recognized as dementia by the experts …i.e. medical professionals?

    1Answer: From the very start you have pestered me about Dementia Alliance International (DAI). See body of this blog entry and your statement, “You demean the purpose of DAI”. When I sent DAI membership application (2013? or 2014?) fully giving all medical information requested, I was accepted in DAI membership. At that time, my primary medical file still had “Dementia without behavioral disturbance; Unspecified dementia type”. As I have said many times, until late 2012 we thought my dementia symptoms were caused by Lyme Disease, but 5 years of treatment changed that theory. My first understanding that Dementia Alliance International required formal “dementia” diagnosis was later in 2015. It was not until mid-2015 that neurologist gave diagnosis as Mild Cognitive Impairment. During 2015, you or one of your friends told me, (via bullying comments on my blog) that DAI does not accept MCI, but instead requires formal “dementia” diagnosis. I asked Kate about it, then immediately voluntarily retracted my membership.

    2. shared that you have left multiple support groups when the questions about your dementia symptoms were questioned by various group members as doubtful?

    2A: I have never been made to feel unwelcome in a support group of any type. Maybe that was just lack of awareness on my part, because it normally takes quite a bit to offend me. I was member of a Dementia Alliance International (DAI) support group that I voluntarily left after voluntarily retracting my DAI membership. It was stated that I was welcome to stay (and I felt that welcome), but I was too emotional on the topic to be comfortable in that environment. I chose not to attend. You may ask Kate Swaffer for verification, since she was the one speaking to me.

    3. shared that you went to an international forum on dementia representing yourself as an “expert” in dementia when you didn’t even have a dementia diagnosis (except your self- diagnosed one) and no formal education in the subject matter to qualify you as an expert?

    3A: Fully disclosed medical information when I submitted application to speak at Alzheimers Disease International annual conference for 2015, in Australia. Was accepted. At that time, again, my primary medical file said ““Dementia without behavioral disturbance; Unspecified dementia type”. My speech contents is here >> https://truthfulkindness.com/2015/04/06/value-for-lived-experience-of-pwd-as-contributor-to-dementia-friendly-community/

    4. shared with your readers that you self-diagnosed your Lewy Body “symptoms” which are based only on your reported statement that you had two grandmothers with Lewy Body/dementia (again, diagnosed by you, not confirmed by a brain autopsy)?

    4A: Neurologist said we need to keep a close eye on me because with these symptoms I am at high risk for Lewy Body Dementia. ((By the way; my grandmothers did not show Lewy Body symptoms … but they did have an “unspecified dementia” diagnosis by their respective physicians.)) I see no need to change wording of the blog I have updated on this matter. >> https://truthfulkindness.com/2015/05/18/re-blog-diagnosis/ .

    5. shared the tests (and results) you underwent BY A NEUROLOGIST (not a GP) to determine that you actually do HAVE dementia?

    5A: I got a bit snarky when composing answer for this, then took deep breath and started over. I went to great lengths to gain my copies of tests and results from neurologists (not GP) … and have no intension of publically sharing that private medical information.

    6. shared your subsequent annual neurocognitive testing scores done BY A NEUROLOGIST?

    6A: I went to great lengths to gain my copies of tests and results from neuroPsychologists (not GP) … and have no intension of publically sharing that private medical information.

    7. disclosed to your readers that 3 major medical institutions have declined to diagnose you with dementia?

    7A: I see no need to change wording of the blog I have repeatedly updated on this matter. >> https://truthfulkindness.com/2015/05/18/re-blog-diagnosis/ .
    I hope you can find peace. This is the end of our conversation.

    Like

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