Glutened

Tru here.

As mentioned this morning in Lori LaBey’s recorded “Dementia Chats” (see Link bottom of page) not all of our symptoms are caused from dementia issues.

Today i show evidence of gluten intake.  SURPRISE !!! (but not a pleasant one).

Celiac Disease is an autoimmune reaction to the gluten protein.  For me, that means i ingested anything from one very small crumb to several slices of something that contains some form of wheat, rye, or barley.  Celiac disease is like an on/off switch in the gut.  Once that switch in “on” there is no differentiation for amount of gluten intake.  Gluten just happened in some amount needed to push the switch.  Eating more gluten will not make the reaction more severe.

.*.

We have an entire body, and
with the overwhelming effects of dementia, we tend to blame everything on that aspect of life.
But every person is an entire person — with other aspects influencing the picture.

For me, those other aspects are numerous. Celiac Disease is an important one in the mix, and the probable-cause of several others.  Even as an infant, i had great complications with baby cereal and all the other high-gluten baby foods from that era.  Eventually my parents decided i just had a sensitive stomach … and lived with the various effects (including alternating constipation and diarrhea, headaches, and fatigue).  i think many aspects of my health are more severe than necessary, due to all body systems developing under the added stress of minor malnutrition from undiagnosed celiac.   An effect of the era when that type of knowledge was not well known yet.  My brother’s malnutrition was much more noticable than mine, with distended stomach and liver disease even before any alcohol intake occurred (so he was always the designated driver, LOL) .

Finally received diagnosis as an adult.  And now i know that one of my results from getting glutened (along with up to 2 weeks of extreme diarrhea, headaches, and fatigue) is declined cognitive abilities.

For me, the cognitive decline is
not severe,
not cumulative,
and once i go gluten-free again will return to prior cognitive levels within a week or two.

I very much enjoy mild gingerbread & Scotch shortbread during the holidays.

Gingerbread people, gingerbread houses, etc are almost the epitome of “holiday” (as shown by the fact that i made this poster earlier this week, without knowing i had probably ALREADY been glutened).

Soooo … My gluten switch has already been turned on, and the little intestinal villi are already temporarily flattened and unable to correctly bring nutrients into my system.
i might as well take advantage of the timing with holidays so close, and extend gluten intake 6 weeks until the end of the holidays.

My gluten reaction lasts almost 14 days, so the REACTION will probably still be in effect during Thanksgiving.   I know 6 weeks is a long time, but it is oh-so-tempting to be able to eat the special hoiliday treats, and i just MIGHT say this is the time to consider the blessings of timing … and SPLURGE !!!

It might be worth the price.  ((smile))

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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.

Celiac (from Celiac.org) >> https://celiac.org/about-celiac-disease/what-is-celiac-disease/

2015 Celiac & Dementia >> Celiac com / Celiac and Dementia

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

“Dementia Chats” playlist is among other playlists here >> https://www.youtube.com/user/AlzheimersSpeaks/playlists

PS:  Even tho i have now returned from two months “off” dementia advocacy, probably will not make huge effort to blog every week during November/December.  I will be busy enjoying the holidays (and maybe not thinking nearly so well). ((smile))

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* 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 © 2018Nov13. Tags are: celiac, comorbidity, decision, dementia, PLwD.

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My Time with DAA

Tru here.

Thank you, DAA, (Dementia Action Alliance in USA) for opportunity of investing with this organization.

Feel good about time spent on Advisory Board of DAA  >> https://truthfulkindness.com/2017/02/02/daa-dementia-action-alliance/

People i was involved with were helpful, kind, and thoughtful.
Projects i was involved with were helpful, and met goals of both DAA as an organization, and myself as a person.

.*.

2015 pdf publication “Words Mater: See ME not my dementia”
available for free download at >> https://daanow.org/resource-center/reports-papers-other-publications/

2016 pdf publication “Living with Dementia: Changing the Status Quo”
available for free download at >> https://daanow.org/resource-center/reports-papers-other-publications/

.*.

2017 “Re-Imagine Life with Dementia” conference, planning (including gathering PLwD artists), presenting, etc.
Vid of my presentation begins at 50minutes into this recording >> https://youtu.be/nZTCAlfg_Zg  .
Wrote about the conference here >> https://truthfulkindness.com/2017/07/09/1st-daa-conf-usa2017/ .

.*.

2018 vid “Living Beyond Dementia” for US Neurology conference >> https://youtu.be/Hw20LNtwNGo  , and attendance at that conference .
Wrote about it here >>  https://truthfulkindness.com/2018/05/01/2-neurologists/

.*.

I enjoyed partcipation in the Advisory Council and also DAA sub-committees with their respective projects;
Conference Planning, Arts, Well-Being, Technology, etc.

But now it is time for me to do other things.

USA’s Dementia Action Alliance website is here >>  https://daanow.org/ .

.*.

Glass fish from island of Murano was gift of Thanks from Dementia Action Alliance to me.
THANK you for the gift.
While living in Italy i had an older friend on island of Murano; an exceptional glass artist named Tino Gobbato.
i always enjoyed our conversations — and the wonderful glass creations in various stages of completion.
His “Baroque Chandelier” hangs over the antique table i inherited, and right now, the Murano fish sits on that table.

Thank you !

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* 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 © 2018 Nov 05. Tags are: DAA, dementia, Dementia Action Alliance, PLwD, Truthful Kindness.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Frustration from not connecting Cause and Effect

Tru here with great frustration;

I did it again.

Messed things up because i did not thoroughly understand the fine print.

.

Started this entry four months ago, with only the note
“holes in our ability to connect cause and effect”.

Forget what triggered that short note.  In this case i did not think thru to the possible result of my action.

In this case, i could not thoroghly understand what was written, but assumed that i understood motives of writer enough that it did not matter.

frustration … at MYSELF.

I am the one at fault.

at one time i was the one responsible for reviewing the fine print of contracts for a hazardous waste facility.
at another i was secretary to an attorney.
at one point i certainly had the ability to understand this simple document.

but even now i certainly know enough to WAIT until someone who has intact brain function can review document.

But i was excited and in a hurry.  I did not think thru to results of my action.

uggggh!!!

There is a reason my name is no longer on the checkbook or bank accounts (except for one credit card which we keep a low limit for).
I (yes me) … I asked for those conditions because i recognized the financial dangers.

Now i messed up … again .

Okay … BREATHE … i tried a nap (with no success), but must pick myself up and … go outside and do some dog training, work on Family History … do SOMETHING on a different topic for a while.  Everyone is defferent, for some folks eating might be soothing.  A hot drink might be a good place for me to start.

hmmm  ((smile))  even tho i have so many other things that NEED done, might be good time for my music … or a craft … or a long soak in the tub might be good.

But first, exercise and work out some of this energy from frustration, LOL .

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.

 

Distorted Decision-Making >>  https://truthfulkindness.com/2014/09/09/distorted-decision-making-in-kitchen/

Attitude of Gratitude >>  https://truthfulkindness.com/2015/11/24/dst-grief-depression-attitude-of-gratitude/

i soak >> https://truthfulkindness.com/2016/12/20/i-soak/

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/


* 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”. Copyright © Truthful Loving Kindness on 25 Oct 2018. Tags are: cause and effect, dementia, discouragement, frustration, PLwD.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Call for PLwD Arts/Crafts Entries 2019 Dementia Arts Fest

Tru here to share a great opportunity for Persons Living with Dementia (PLwD) to help widen understanding about living with dementia for the general public.

UPDATE: In addition to the $25 submission fee, i asked about costs for return shipping & insurance during the exhibition, and received following reply:  “If returning shipping/insurance poses a financial burden on any artists who do not wish to sell their artwork, we can work with them to cover the cost.”  As always, check the fine print of Terms and Conditions !!!

.*.

The Dementia Action Alliance is launching a national juried Arts Fest to highlight the vibrant lives and many abilities and creative talents individuals continue to have while living with dementia.  Dementia is widely misunderstood and stigmatized which negatively affects the lives of individuals and families living with dementia. The annual Arts Fest aims to enhance understanding about living with dementia.

 

The accepted juried artworks will be exhibited during the 2019 National Re-Imagining Dementia Conference at the Westin Buckhead Hotel in Atlanta, GA June 20 ~ 22, 2019.

 

We seek entries from individuals living with dementia. Entries are open to ceramics, drawings, paintings, photographs, printmaking, collage and mixed-media, sculptures, watercolors, jewelry design, textiles, quilts, and woodworking.

.*.

“Thriving & Inspiring thru Heart & Art”

Submissions due January 15, 2019

Exhibition in Atlanta, GA June 20 ~ 22, 2019

Click here for more information and the CALL FOR ENTRIES.

So very pleased this DAA/USA project is coming to fruition, and high hopes for success.

.

  • Mike Belleville made this art piece specifically for DAA Call for Entries to 2019 Dementia Arts Fest.

 

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.

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* 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”.  Tags are: art, craft, dementia, DAA, Dementia Action Alliance, PLwD.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Change from FaceBook issues — and Pgs Added

Tru here.
Beginning on Friday, and Again today, i have no access to see my Dementia Symptom Perspectives’ FaceBook page. I can see when someone responds on it, but how many others are like me in that they cannot see what is posted on a page that requires very high time investment ?
.
i can add items to the page,
… and of course FaceBook wants me to spend money on the page.
But cannot see any of the past entries because no matter what i do, only the header shows.
.
About a dozen friends have had their FB accounts hacked in past 3 days. Quite a few other friends have left FB in past months, due to fraud and other problems.  i suspect FaceBook popularity is on the decline.
… so …
for RELIABLE contact, suggest my blog webpage.
.
Beginning Nov 1, i hope to resume weekly Blog entries, and i will continue SOME presence on FaceBook, but do not expect to see me near as much on FB, because i do not have confidence in it.  That “new” time will be filled with other things that i have not had time for in past two years (like exercise and crafts).
— Truthful Loving Kindness to all ❤
.
.

Recent Pages added to my blog are below:

Remember,
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.
.
.
Emil Petrin & Family Gathering (plus pdf for recent binder i provided there)
>> https://truthfulkindness.com/about/life-other/family-history-index/emil-petrin-and-family-gathering/
.

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Most recent are here >> https://truthfulkindness.com/

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* 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 © 2018 Oct 08. Tags are: dementia, PLwD, social media.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Break Time 2018 Sept Oct

Tru here.

In the next month i have husband’s birthday, my birthday, my mother’s 80th birthday celebration, and two other family gatherings from connections made via dna.  … Then i need time to recouperate from all the celebrations.

We all need a break from time to time.  Averaged one blog entry per week for first 8 months of 2018 … but (like last year) blog entries will be less frequent for a while.

Despite break times, all together there are 172 blog “entries” plus ~350 blog “pages” on this website over the past four years, which averages more than 10 postings per month.

My goal in next couple months is simply one blog entry or more per month.  Considering each blog entry now averages well over 8hrs time investment, i think that is plenty of time investment during my break.  I hope to return to “Truthful Tuesday” pattern well before the end of 2018.

.*.

During this break time …

i will continue FaceBook contact with friends who are living with various types of dementia, and sharing their projects from time to time, both here on my blog, and on Dementia Symptom Perspectives’ FaceBook page.

i will continue my tasks as Assistant Administrator with Dementia Mentors.

i will continue as member of Advisory Board with USA Dementia Action Alliance (altho i am decreasing number of sub-committees i participate in).

I will continue as host for each Monday Dementia Mentors’ group chat, and attend most of the other daily chats as a guest (needed for my well-being).

i will continue trying to share a project from someone living with dementia at least 5x/week on Dementia Symptom Perspectives’ FaceBook page.

… but i just cannot continue all the above PLUS spending about 10hrs/week on blog, … and do the family stuff that i want to do in the next couple months — not and deal with my own dementia challenges at the same time.

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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.

.

My most crucial entries are here >> https://truthfulkindness.com/category/important/crucial/

Dementia Symptom Perspectives’ FaceBook page >> https://www.facebook.com/dementia.symptom.perspectives

Dementia Mentors >> https://www.dementiamentors.org/

USA Dementia Action Alliance >> https://daanow.org/

Most recent entries are here >> https://truthfulkindness.com/

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* 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 © 2018 Sept 27. .

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Vegetable or Human

 

Tru here.

i rarely talk about terminology, because Language is transitory.
Context, context, context.
Context of time; In any specific location a word can mean one thing, but in a few years it might mean something else even in that location.
Context of location; if you are talking to someone in a different community or a different nation — the word can again have an entirely different meaning.
Context of surrounding words, phrases, and paragraphs; If you add context on the page, that can also entirely change meaning of a word.
So mostly i try to avoid topic of terminology, because too much possibility of misunderstandings.

But there is a huge difference between plant life and animal life.  Offended by CBS’ 60-Minutes’ decision to include Mike’s opinion that Carol has become “a vegetable” in their finished episode, and my reply to them is further down on this page.

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I am offended by the medical term “vegetative state” which apparently became popular at the birth of bioethics (1978 Belmont Report).

Term “vegetative” is “relating to, composed of, or suggesting vegetation” (plant life).
i do not believe there is EVER a validation for suggesting that a person is related to a vegetable.
There is a live plant, the process of death, and a dead plant.
There is a live person, the process of death, and a dead person.

Please note the research Links at bottom of this page.

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Terminology can be very important and terms like “disappear”, “gone”, and “vacant” contribute to the perception that no Person exists any longer; only a shell.
That is often a theory, but far from a proven theory (or fact) and contributes to the thought that we should suicide while we still have the ability,
in order to prevent unneeded financial & energy drain on our loved ones.

If our person is no longer alive then suicide only makes sense. 

In contrast, if we are alive, but only able to be responsive for brief unpredictable moments,
(with days, weeks, and months of no ability to outwardly respond)
then you are motivated to continue looking for those moments when our “personhood” peeks from behind the curtain of disease,
… & sparkles.

But if you are not looking … then you will miss the moment. Please look for us.”  — TLK

What is a “vegetative state” ??

BrainFoundation.org.au helpfully states the following:

“… A person in a vegetative state may open their eyes, wake up and fall asleep at regular intervals and have basic reflexes, such as blinking when they’re startled by a loud noise, or withdrawing their hand when it’s squeezed hard. They’re also able to regulate their heartbeat and breathing without assistance.

However, a person in a vegetative state doesn’t show any meaningful responses, such as following an object with their eyes or responding to voices. They also show no signs of experiencing emotions nor of cognitive function. …” ((font emphasis my own))

.

Dr Steven Novella, Neurologist at Yale, states in ScienceBasedMedicine.org :

“… many patients with a diagnosis of PVS ((Persistent Vegetative State)) have signs of minimal consciousness if they are examined more thoroughly. While it is disappointing that the misdiagnosis rate remains so high, such results are not surprising. The diagnosis of PVS is partially based on the demonstration of a negative – the lack of any sign of even subtle and transient consciousness. Demonstrating a negative is always only as reliable as the thoroughness of the search, and it is not surprising that a more thorough search is therefore finding more patients with subtle signs of consciousness.”  ((font emphasis my own))

.*.

Apparently the American Neurological Association discouraged “coma vigil” term in preference to “vegetative”, but i totally disagree.  I think term “coma vigil” is entirely appropriate because this is a time when vigilance is still very important.  Too many times folks have come out of coma or “vegetative state” with news of their perceptions during the time period … when it was said they had no emotions or cognitive functions.  This is a PERSON … not a vegetable. !!!

.*.

On August 16, 2018,
I sent this email response to CBS regarding the 60 Minutes episode
posted Aug12, 2018 with Dr. Jon LaPook, Mike Daly, and Carol Daly who has Alzheimer’s.
>> https://www.cbsnews.com/news/60-minutes-alzheimers-disease-following-a-couple-from-diagnosis-to-the-final-stages/

.*.

Thank you, CBS, for bringing attention to needs of care-partners for folks with Alzheimer’s and other forms of dementia.  i think it is important to share benefits of music and probable need for facility in late-stage care. … but … disappointed that even in early-stage interviews with Mike and Carol Daly, CBS really mostly emphasized decline rather than possibilities for activities Carol WAS able to participate in and enjoy. Extremely disappointed that CBS allowed term “vegetable” (which literally de-humanizes the individual) and Carol being two different people.

Just because she has lost almost all physical and cognitive ABILITIES does not mean she is not the same person !!! Even with Alzheimer’s (or any of the more-than-100 other types of dementia) everyone’s path is different, and almost always, if folks spend enough time SEARCHING for glimmers of that person … they will find that the person is still there … just progressively unable to express themselves and perhaps spending almost all their time in their individual world.

i know that Mike’s opinion is that his wife has become a vegetable, and i know there is a theory that the person is no longer present — only tissue and blood, etc. i have found no data to support that THEORY and it can be an extremely unhelpful perspective for careful, considerate care of the PERSONS who no longer have the ability to express themselves.

 

This episode felt like fear-mongering.
There is enough fear even in a carefully-balanced and thoughtful portrayal, without reaching for it.

 

Would have been good to have greater context on what kind of conversations this couple could have had during the previous years, etc .
Suggest contacting Dementia Mentors, Dementia Action Alliance USA or other organizations who strongly consider input from folks who are living with the disease.

DAA (Dementia Action Alliance) plans a conference in Atlanta GA June 2019.  You might want to contact Karen Love or Jackie Pinkowitz for more information on “Re-Imagining Dementia”.

Gary LeBlanc at Dementia Mentors is an excellent resource.

Teepa Snow’s “Positive Approach” could be helpful.

.*.

Related Links:

CBS Episode >> https://www.cbsnews.com/news/60-minutes-alzheimers-disease-following-a-couple-from-diagnosis-to-the-final-stages/

Dementia Mentors  >> https://www.dementiamentors.org/

Dementia Action Alliance USA  >> https://daanow.org/

Teepa Snow  >>  http://teepasnow.com/

Retired Dr Jennifer Bute’s website >>  http://www.gloriousopportunity.org/

And my own website >>  https://truthfulkindness.com/

.*.

Some of the Links i visited on this issue are below:

Please note the “Diagnosis” section >> https://en.wikipedia.org/wiki/Persistent_vegetative_state

BrainFoundation >> http://brainfoundation.org.au/disorders/vegetative-state

Dr Steven Novella, Science-Based Medicine >> https://sciencebasedmedicine.org/minimally-conscious-vs-persistent-vegetative-state/

New England Journal of Medicine >> https://www.nejm.org/doi/full/10.1056/NEJM199405263302107

2001 Yearbook of Intensive Care and Emergency Medicine >> www.coma.ulg.ac.be/papers/vs/Coma_Yearbook2001.pdf

My entries on Terminology >> https://truthfulkindness.com/tag/terminology/

CBS page for response >> http://audienceservices.cbs.com/feedback/feedback.htm
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* 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 © 2018Aug 20. 10hrs investd for text & 3hrs for graphic.  Tags are: dementia, human, PLwD, terminology, vegetative state.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Recent Pages Added August 2018a

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.

Pages recently added to my blogsite are from:

.

Harry Urban “Gardening” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/garden-2018may/

Judy Rogers Brinkley “Completely Whole” >>  https://truthfulkindness.com/index-persons-with-dementia-pwd/judy-brinkley/completely-whole/

..

Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

* 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”.  Tags are: dementia, persons with dementia, PLwD.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Snorkel Vacation Strategy

Tru here.
Went snorkeling with Manta Rays this month, and we learned that taking me on spontaneous vacation is no longer a wonderful idea.  Had never been to Hawaii, but it was a whirlwind trip.

Have spent close-up time with several other animal-encounter modes; Hands-on 1-hr visit with octopus, 1-hr visit with penguin, held baby jaguar, raised a coyote pup, etc.  But these were not in their own natural “wild” environment during our close-encounter.  Encounter this month was different.

Much appreciate the photos and video we have, but my senses were so overwhelmed that i have only retained two mental “snapshots”; one was when husband said that he wanted to share this experience with me.  He requested we take time and money to snorkel with the manta ray.  And the other was a mental snapshot of the white under-side of a manta … almost touching my nose.

.

Contacted Hang Loose Boat Tours for MantaRay Night Snorkel Tour (link below).
Notified them of my dementia symptoms to minimize surprises.
Arranged for someone to swim down and video the manta ray encounter from deeper in the ocean.

So husband got home Wednesday night.  Thursday he took me to try on several full-length wet-suits, and rented one for the weekend, then packed.  Left Friday morning, driving 5hrs to airport then flying 6hrs, and arriving in Hawaii equivalent of about 1am our time.  Obviously i was THOROUGHLY exhausted (my bed time is before 10pm).

We got up Saturday morning, and had leisurely drive to “Turtle Bay” , (because i have a thing about turtles).  Did not see any turtles, but quite a few rather-large colorful fish.

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About 5pm (8pm Pacific Time) it was time to gather for Manta Ray excursion.

It was an exciting boat ride, with choppy waves, and dolphins playing in the wake of the boat.  i was very glad i had taken a pill for motion sickness.  There was loud music playing along with excited squealing from fellow passengers, and i was very glad that i had remembered several sets of ear plugs.  Water and air was sparkling clean — not affected by volcanic smoke or ash.

Simon and crew helped me into the water.

Unfortunately i forgot this Night Snorkel with Manta Rays trip would last much longer than my sugar level from eating would last.  I need to eat every two hours, or blood sugar crashes.  Excited squealing from fellow persons in close-encounter with MantaRay, my own excitement, choppy water during boat trip, and pressure of holding my arms above my head for extended time all contributed for a sugar crash.  Consequences of not thinking things through to plan well were extreme shaking, unable to hold onto the light bar, suspect i hyper-ventilated, and needing to go back to the boat.  After helping me out of the water, Simon and crew realized i was having problems, got me back to my seat in a quieter (and most stable) part of the boat, offered me some snacks, and the traditional “chum bucket”.  They checked on me several times and kept an eye on me constantly.  After the boat docked, an assistant helped husband get me back up to the car, then hung around to make sure i was okay (since did not have walker with me on the boat).

… but when i got back to the motel (again very late, by my inner clock) and laid down on the bed Saturday night, all i could see mentally was a very close, close-up of the white under-side of the MantaRay, almost touching my nose (several persons’ faces got wiped by the manta).  So much sensory overload that i dont think i showed much emotion during the excursion,

… but i smiled as i fell asleep.

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Next day, Sunday, we had leisurely breakfast then afternoon return flight of about 6hrs.  We spent Sunday night at motel before 5-hour drive home on Monday, but better planning on our part (mine and care-partner) would have made this a truly exceptional encounter.

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Benefits:
Completely new activity, in completely new environment (under water), using completely new sets of mental and neurological systems.  (Good for neuro-plasticity).
Wonderful photos and underwater video of trip.
We ordered (and today received) stuffed toy Manta to add for my memory collection, providing daily reminder of the close-encounter.

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Learned:
NEED to plan one day on each side of an event, (even travel) to wind down.
Need to remember blood sugar level in all phases of planning process.
Need to consider sensory overload (sight as well as sound) as a strong element for exhaustion, as well as physical exertion.
If you want souvenirs, then plan TIME for that activity.
Need to confirm in writing, BEFORE payment, that travel seating is adjacent to care-partner.

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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.

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Painting “Sensory Overload” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/max-mccormick/max-mccormick-2014/

Hang Loose Boat Tours >> https://www.hawaiitourboat.com/

“Sensory Change”s pdf booklet >> http://www.sdwg.org.uk/talks-and-publications/

People Explain >> https://themighty.com/2016/02/people-explain-what-sensory-overload-feels-like/

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* 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 © 2018-07/30. Tags are: animal, dementia, PLwD, strategy, symptom, travel.

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Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

Recent Pages added 2018 July

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.

Pages recently added to my blogsite are from:

Mary Radnofsky

Vocabulary >> https://truthfulkindness.com/index-persons-with-dementia-pwd/mary-radnofsky/vocabulary/

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((Plan to write about my trip to snorkel with Manta Ray SOON — just gotta have time to upload photos and video.))

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Personal Family History

Year WITHOUT Summer 1816 >> https://truthfulkindness.com/about/life-other/family-history-index/year-without-summer-1816/

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Index for other contributions here >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

* 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.  Tags are: dementia, PLwD, .

MyFreeCopyright.com Registered & Protected

Winner of “20-Best” Alz Blogs since 2015, including current year >> https://www.healthline.com/health/alzheimers-disease/best-blogs-of-the-year

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