Verbal Comprehension Strategies Part 3

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Tru here.

A fully-understood conversation means i grasp the important parts AND the other person is comfortable that they got their point across.
The outline below seems to help ME.

—  ***  —

Last year i posted >>  https://truthfulkindness.com/2018/12/31/floating-words/ .
My challenges with verbal comprehension have continued and intensified.

… So husband and i have some current coping strategies, but we are definitely hoping more strategies will show up soon.

1) As discussed in Part 1, conversation needs to be: a) slow, b) clearly enunciated, and c) within sight, while d) watching for body language.  Also e) eliminate as much distraction as possible .
These strategies are covered in more detail here >> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ .

2) Longer PAUSE between sentences, and eliminating any un-necessary phrases, are two strategies becoming even more crucial.  Remember i am most likely to understand first bit of statement and last bit of statement, so including anything in the middle is counter-productive;
it clouds my understanding of what the subject is.

3) Try to make your first sentence a very short “subject” sentence.  This is similar to the “subject” heading in eMail format, and tells me where to find context for your words in my brain storage.  WAIT for any clarifying statements, until i have fully-registered your primary statement.  Otherwise i am still trying to register your statement, at the same time as i am trying to figure out how your words modifies that statement,
… so ALL of it is lost.

4) Sometimes a simple note or picture can make the topic much clearer.  Best-case scenario is BOTH note and short conversation.
Using more than one sensory system in conversation is almost always a helpful thing.
While telling me he was leaving, husband handed me this note: “Taco Bell for lunch with grandson … then taking grandson home.  i will return by 4:30”.  i had audio, visual, and textural input because i also had a note in my hand.  Plus … In a few minutes, when i have forgotten where he went, hopefully i will see the note.

5) Graphics almost always help.  We have discovered that Potential for future misunderstandings is almost always minimized by including pictures, maps, etc.  We were in the car and husband asked about upstairs wainscoting (lower-wall-coverings).  In less than a minute we decided the topic needed to wait until we were in the location, with paper and pencil.  Then we can both better understand each other, and there will be pieces contributed by both of us … and verified by looking at the paper.  When i feel that changes were made without my input … the paper shows my input.  We both initial the paper and file in construction folder.
Sometimes he will have me initial calendar items, which are then posted on fridge door.
It has taken a while to adjust to this process, but i think it is much better for our family dynamics
… at THIS particular stage of decline.
(In Later stages, i imagine this process could create more problems than it would solve.)

As Listed above,
Part 1 was initial suggestions
>> https://truthfulkindness.com/2014/12/12/verbal-comprehension-strategies-1/ ;
Part 2 was intensification of symptoms
>> https://truthfulkindness.com/2018/12/31/floating-words/
… and this is Part 3

. .

.*. . .*. . .*. SCHEDULE: .*. . .*. . .*.

THIS WEEK,
along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following:
.

 

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate
>> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 23 Wednesday: DAI October Webinar on “Assistance Dogs for Dementia”.
Date/Time and more information is available here
>> https://www.dementiaallianceinternational.org/october-webinar-assistance-dogs-for-dementia/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 24, Thursday: DAA Discussion topic “Finding Purpose”, hosted by JohnRichard (JR) Pagan. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.
.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19
>> https://teepasnow.com/pac-annual-conference/ .
.

.*. . .*. . .*. . .*. . .*. . .*. . .*.
.*. . .*. . .*. . .*. . .*. . .*. . .*.


* 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 21Oct2019. Tags are: communication, conversation, dementia, Living with Dementia, PLwD, relationship, strategy, verbal comprehension ..

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Autumn with Dementia Mentors

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Tru here.

—  ***  —

i feel priveleged to be part of the Dementia Mentors’ projects, and helping as Assistant Administrator.

  https://www.dementiamentors.org/

—  ***  —

Lots going on in our Dementia Mentors projects Lately;
We have a new group gathering during the week,
new personalized Mentor teams in the works,
new videos from several members,

… and also considering ideas for a Dementia Mentors’ COOKING booklet.

—  ***  —

NEW MEETING for Memory Café:

We have had several members ask for an additional Memory Café meeting.
Having an addition Café meeting time allows us to keep our groups personal and cozy.
We now have at least 7 gatherings for Persons with Dementia every week,
and an average of 33 meetings per month.

Wonderful to visit with my friends — in our Living Rooms, or kitchen,
… or with Laptop in back yard, LOL.

Please join us if you have the chance.
If you send me a message i can add you to the FaceBook notification list;
this way you will not miss a single smile, laugh, or tear.

—  ***  —

NEW MENTOR TEAMS:

We try to avoid having a Memory Café group chat turn into individual mentoring.
(One-on-one mentoring is the option for a member to speak longer time periods,
without needing to worry about sharing the time with everyone else,
because it is usually only 2 people.)

In general,
individual mentoring is also the appropriate option for more intensely personal topics
like some of the sex or hygiene questions.
Sometimes these questions can still be appropriate in a very-small group,
but few of our groups are small now.
We range from 5 members … to over a dozen members in group chat at any one time.

Individual Mentoring is an ideal opportunity to begin processing the grief and super-high emotions
that almost always accompany a dementia diagnosis.
Grief is a process,
and so is the learning curve for finding strategies to live happily in everyday life AFTER diagnosis
… and adjusting to the continually-changing “new-normal” of our life NOW.

—  ***  —

Dementia Mentors’ VIDEOS:

Elmarie Janse van Rensburg of South Africa gives us helpful tips on staying alone for short periods of time when living with dementia, at https://vimeo.com/showcase/3464118/video/362831539 .

Tim Perkins talks about dealing with apathy after diagnosis with dementia, at https://vimeo.com/showcase/3464118/video/363359890 .

Anne Miller talks about how certain things she has found help her … and playing music is one.  https://vimeo.com/showcase/3464118/video/364850226 .

Our Video Archive is here https://vimeo.com/showcase/3464118 .

—  ***  —

COOKING Booklet:

We are thinking of basic COOKING suggestions (hope to include some from the wonderful Barry Pankhurst), plus specific recipes used by our members.  So far we have volunteers for: Egg tortilla, 3-ingredient Muffins, Special Spicy Sauce, Snickerdoodles, Cobbler, BourbonBalls, and Home-Made Eggnog.   Heads-up to look for this … hoping by the end of 2019, but no promises.

—  ***  —

i feel priveleged to be part of the Dementia Mentors’ projects, and helping as Assistant Administrator.

  https://www.dementiamentors.org/

—  ***  —

. .

.*. . .*. . .*. SCHEDULE: .*. . .*. . .*.

THIS WEEK,
along with daily Dementia Mentors’ video chats,
( https://www.dementiamentors.org/ )
i may (or may NOT) join the following:
.

Thursday Oct 17 will be another DAA Discussion. Topic will be “Financial Impact of Dementia”, hosted by Laurie Scherrer. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

… and LATER in October
you might want to clear your calendar for :

.*. . .*. . .*. . .*. . .*. . .*. . .*.

 

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 23 Wednesday: DAI October Webinar on “Assistance Dogs for Dementia”.
Date/Time and more information is available here >> https://www.dementiaallianceinternational.org/october-webinar-assistance-dogs-for-dementia/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 24, Thursday: DAA Discussion topic “Finding Purpose”, with John-Richard (JR) as Host..

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19
>> https://teepasnow.com/pac-annual-conference/ .
.

.*. . .*. . .*. . .*. . .*. . .*. . .*.
.*. . .*. . .*. . .*. . .*. . .*. . .*.


* 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 14Oct2019. Tags are: advocacy, blog, dementia, Dementia Mentors, Living with Dementia, PLwD, relationship .

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The Latest Cure

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???

???.???

Tru here.
How can any credible claim be made from a very tiny study (8 people with Alzheimers) ???

Today it is electromagnetic therapy for Alzheimers.
Last week it was a diet for all kinds of dementia.
The month before, there was another behavior-cure-all for dementia.

All of these build not only dissatisfaction with our current “new normal”,
but misunderstandings among family and friends.
Friends think — and sometimes actually SAY,
“There is a cure,
so obviously you CHOOSE to continue dementia symptoms.”
ugggh !!!

.*. . .*. . .*.

Some of my friends are getting excited about
a head cap that emits electromagnetic waves in specific frequencies.

For six months
i tried a head cap that emits electromagnetic waves in specific frequencies
… seven years ago.

My treatment had absolutely no results
except output of time and money
… because of course none of it is covered by insurance.

But little is truly known
on what causes the VARIOUS types of the Alzheimers-type of dementia,
which itself is one of more than 100 known types of dementia.
Along with the fact that (if i recall)
more than half the autopsied “Alzheimers” brains
actually had more than one type of dementia.
(but cannot find the study i am thinking of — in past 5yrs).

So,
realistic possibility of improvement or “cure” of the disease itself
is probably in the distant future.

Unfortunately, when we get excited and invest family time and funds,
then we get depressed when nothing happens.
It is an “equal and opposite reaction”.
Not only is depression a concern,
but If we pursue This solution and That solution
… then we are left with no more money.
.
No more money for the family to get care-partner assistance
… or relief for their own needs.
Have seen this with some of my friends with other diseases.
Bankrupt families
living on the street because they spent all their funds on the “possibilities”.

If you allow yourself to get your emotions wound up in hope for improvement or a cure,
it can become a never-ending sewer of failure.

I think the medical community is still too far away from the necessary knowledge,
for improvement or cure to be our hope.

For those of us currently experiencing dementia symptoms,
This generation must HOPE in our QUALITY of life and learning coping STRATEGIES,
… and hope in FELLOWSHIP and UNDERSTANDING during the journey.
… at least that is my own personal opinion.
But I have lost acquaintances from discussion of this topic
(not the same acquaintances that are now street-people due to the cost, of course).

For ME, electromagnetic pulse therapy was not helpful,
but there could have been many mitigating factors;

  1. a) some -including neurologist- have theorized a slowly-progressing-type of Alzheimers for my cognitive decline, but my most prominent symptoms are definitely vascular and Lewy Body types of symptoms.  Electromagnetic pulse therapy may be completely non-effective for those types of dementia.
  2. b) when i tried electromagnetic pulse about 7 years ago, i think the specific beneficial settings were just “guess and go”.  Settings are probably much more precise 7 years later.
  3. c) the setting strength needed is probably much more precise 7 years later.

.
All the little bits of knowledge contribute … over time.
WONDERFUL that folks are willing to invest time in small research studies
(this particular study had 8 persons with Alzheimers participating)
and it looks like 7 of the 8 people with dementia feel they are benefitting from the treatment.

These small research studies of various aspects contribute greatly to the knowledge base
that will eventually discover what causes the various types of Alzheimers,
and lead to the needed “cure”.

… Small research studies just need time to “percolate”,
and find some of the successful strategies,
then turn into larger research studies,
which in turn ALSO need time to “percolate”
and develop into constructive bits of certain knowledge
… which can contribute in a larger way toward finding the “cure”.

.

In the meantime, i just wish journalists would be more careful in their headlines.

“Alzheimer’s memory loss reversed by new head device using electromagnetic waves”
is inappropriate heading;
it leads to inaccurate conclusions
… and FALSE hope that a “cure” has been found NOW.
>> https://medicalxpress.com/news/2019-09-alzheimer-memory-loss-reversed-device.html .

“Magnetic pulse to head could improve memory of dementia sufferers”
is a bit more accurate than first heading i read,
but would be much better with added phrase
“Magnetic pulse to head could LEAD to new discoveries for Persons with Dementia“.
>> https://www.telegraph.co.uk/news/science/science-news/11061614/Magnetic-pulse-to-head-could-improve-memory-of-dementia-sufferers.html .

“Head device reduces memory loss in 7 out of 8 people”
would have been much better as
“Head device reduces memory loss in 7 out of the 8 people in study trial”
>> https://www.medicalnewstoday.com/articles/326401.php?fbclid=IwAR2VBaDTVKoQrSB9M8SIXzLXj_cQYkaDJvz0B1p-NyMvQstm-nixISoIq9s

.

Today it is electromagnetic therapy for Alzheimers.
Last week it was a diet for all kinds of dementia.
The month before, there was another behavior-cure-all for dementia.

All of these build not only dissatisfaction with our current “new normal”,
but misunderstandings among family and friends.
Friends think — and sometimes actually SAY,
“There is a cure,
so obviously you CHOOSE to continue dementia symptoms.”
ugggh !!!

.*. . .*. . .*.

.
Let us keep reality in sight when forming journalism titles, okay ?
Personally, i think that “Cure”-mongering can be just as destructive as fear-mongering.
Both distort reality in unhealthy ways.
.
Notes:
A]] a “Monger” is a seller; a dealer in a specific commodity.
These are selling a “cure” … or just more subscriptions.
B]] “(if i recall) more than half the autopsied “Alzheimers” brains
actually had more than one type of dementia.”
… if YOU know where to find Link for this study, please send me the Link.
Thank you.
. .

.*. . .*. . .*.  SCHEDULE:  .*. . .*. . .*.

THIS WEEK,
along with daily Dementia Mentors’ video chats,
(see https://www.dementiamentors.org/ )
i may (or may NOT) join the following:
.

Oct 10, Thursday, will be Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Thursday OCT 10. Time is (one hour duration) beginning 9:30am Pacific Time, 10:30 Mtn, 11:30 Central, 12:30 Eastern time.  5:30pm London, and 7:30 Germany and South Africa.  Requires prior registration: “Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group.”
Registration process has now been simplified.
Let me know, and will put you in contact with Teepa Snow’s helper for this process.
>> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Thurs DAA Discussion will conflict with Teepa Snow Zoom this month.

Thursday Oct 10 will be another DAA Discussion. Topic will be “Driving Alternatives”, hosted by Chuck McClatchey. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time. 6pm London, 7pm South Africa. Link to join is in left column at this page >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

… and LATER in October
you might want to clear your calendar for :

.*. . .*. . .*. . .*. . .*. . .*. . .*.

 

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22.
This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 23 Wednesday: DAI October Webinar on “Assistance Dogs for Dementia”. 
Date/Time and more information is available here >> https://www.dementiaallianceinternational.org/october-webinar-assistance-dogs-for-dementia/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19
>> https://teepasnow.com/pac-annual-conference/ .
.

.*. . .*. . .*. . .*. . .*. . .*. . .*.
.*. . .*. . .*. . .*. . .*. . .*. . .*.


* 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 07Oct2019, with almost 12hrs invested. Tags are: blog, communication, cure, dementia, Living with Dementia, PLwD, relationship .

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Alone for a Week

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Husband was gone last week, so i was on my own.

Had a few mishaps … but nothing which could not be repaired.

Plenty of my chocolate / cold-brew-coffee / protein mixture was on hand, (just not quite enough Cashew Milk to go with it, LOL).

Unfortunately the gluten-free raisin bread i like is no longer available, but i had boiled eggs to go with my 3pm salads, and freezer food was available.  There were bags of pre-cooked crumbled hamburger (with bits of onion), pre-cooked corned beef, and pre-cooked chicken chunks, along with pre-cooked chicken sausages.  Vacuum-packed packets of pre-cooked brown rice were on hand, along with jars of cheese sauces and tomato sauces.

The microwave and i had a week of it.  i even had a bag of Milton’s gluten-free baked crackers to splurge on.

i was left with two phone numbers for local people who could pick up something at the store, and who i could check-in with before going outside for chores etc.  i just needed to remember and check in with them again on my return from chores.  On most days of his trip, i also stayed in pretty close contact with my husband, using text-tool on cell-phone.  (Also have “Find iPhone” app connecting both our phones)

Dog brings his water bowl whenever it gets empty, but pre-bagged dog food in dated, clear plastic baggies enabled me to look at the stack of empty baggies and easily see whether the dog had been fed.

With messages from my sister, and my Dementia Mentors’ pals to keep me company on video conversations, all-in-all, i thought the week went well, but it is awfully nice to have my partner back home.

.

As ElMarie’s suggests in the following video, is also good idea to make sure extra mobility tools are on hand.  i ALWAYS keep them close.  >> https://vimeo.com/showcase/3464118/video/362831539

.

. .

SCHEDULE:

THIS WEEK, along with daily Dementia Mentors’ video chats, (see https://www.dementiamentors.org/ )
i may (or may NOT) join the following:
.
Thurs DAA Discussions.
Thursday Oct 3 will be another DAA Discussion.  Topic will be “Dementia State Plans”, with guest speaker Brenda Roberts, hosted by Paulan Gordon. Zoom video chat begins 7am Hawaii, 10am Pacific Time, 11am Mtn, Noon Central, 1pm Eastern time.  6pm London, 7pm South Africa.  Link to join is in left column at this page >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 10, Next Thursday, will be Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Thursday OCT 10. Requires prior registration: “Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group.” Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Oct 22, Tuesday: Next Dementia Chats with Lori LaBey will be October 22. This monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

.*. . .*. . .*. . .*. . .*. . .*. . .*.

Teepa Snow will hold her first conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 30Sep2019. Tags are: blog, dementia, Living with Dementia, meals, PLwD, .

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Check out 500

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Tru here.
My focus needs to be elsewhere for July.
You will probably NOT see me on FaceBook, and probably no new blog entries during the month of July.
Other folks have filled in for Dementia Mentors’ responsibilities, and i am doing other things this month.

i have scheduled many personal tasks for remainder of this year;
hoping to consolidate my 20 years of Family History research by the beginning of 2020,
and considering my “Legacy” in some other areas of Life.

.

… but that does not mean there will nothing to read at this website  …

.

in five years of effort i now have over 500 blogs with first-person dementia perspective;
200 from myself and 300 from others.

Check them out:
My Top Dozen >>https://truthfulkindness.com/2019/03/18/dozen-2019/  ;
My Most Crucial >> https://truthfulkindness.com/category/important/crucial/ ;
Other Contributors >> https://truthfulkindness.com/index-persons-with-dementia-pwd/

. .

SCHEDULE:

Hope to have more family time during the next six weeks, so i may skip some blog weeks.
THIS WEEK, along with daily Dementia Mentors’ video chats, (see https://www.dementiamentors.org/ )
i may (or may NOT) join the following:
.
Thurs DAA Discussions.
DAA Discussion cancelled for 4th of July.   Go here to get the Link for this week >> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.*.  .  .*.  .  .*.  .  .*.  .  .*.  .  .*.  .  .*.

Next Dementia Chats with Lori LaBey will be July 9. This is twice-monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience.  2nd and 4th Tuesday each month.  Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Tuesday JULY 23. Requires prior registration: “Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group.” Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

i hope to attend Teepa Snow’s conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 01Jul2019. Tags are: blog, dementia, Living with Dementia, PLwD, .

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Chapter Published

Posted on by

Tru here.
Have now received my copy of our book “Dementia-Friendly Worship:
A MultiFaith Handbook for Chaplains, Clergy, and Faith Communities”.
This book is designed to give practical help to faith leaders,
in developing services and creating dementia-friendly faith communities.

i am one of 45 authors included in this book.
My chapter, “Anchor Me”, is included in Section 2:
“Voices of Persons Living with Dementia”.
This section includes authors
Rev. Dr Cynthia Huling Hummel,
Greg O’Brien,
Daisy Duarte,
Jim Gulley,
and myself.

The book has a wonderful intro by Daniel C. Potts, MD .

Unfortunately my reading comprehension is not up to understanding much of the book,
(including my own chapter)
but i am pleased to be included in this project.

You might like to share this title with YOUR spiritual Leader;

> https://www.amazon.com/Dementia-Friendly-Worship-Multifaith-Chaplains-Communities/dp/1785926659/

 

Full disclosure: This is a project of Faith United Against Alzheimer’s.
As one of the authors, my only remuneration is a free copy of the book,
which i received earlier this month.

.

 

.

SCHEDULE:

Hope to have more family time during the next six weeks, so i may skip some blog weeks.
THIS WEEK along with daily Dementia Mentors’ video chats, i may (or may NOT) join
.

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

.

Tue 25 June: Dementia Chats with Lori LaBey. This is twice-monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience.
Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .
.
Thurs 27 June: DAA Discussions.
JohnRichard (JR) Pagan will host Dementia Discussions tomorrow on topic
“Keeping the House Well Lit & Organized“, June 27.
Persons with Dementia and Care-Partners are welcome to participate
>> https://daanow.org/…/connect-and-enga…/dementia-discussions/ .

.

Also dont forget upcoming conferences below
(which i will NOT be attending as i have no funding):
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Tuesday July 23. Requires prior registration. Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group. Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

i hope to attend Teepa Snow’s conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 24Jun2019. Tags are: book, dementia, Dementia-Friendly Worship, Living with Dementia, PLwD, publishing, .

MyFreeCopyright.com Registered & Protected

 

Computer Complications

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Tru here.

Computer Administrative stuff is just getting much more complicated for me lately.
Complications with getting into Zoom video meetings,
Complications with compiling the info needed for my various tasks.

Sometimes i am asked what my days are like.
i have often given samples of complications in hygiene, sleeping, etc,
but today thought i would describe my daily “work”.

i am Administrative Assistant for Dementia Mentors, which has certain online and computer-based tasks.
My personal Advocacy project (along with blogging) is Dementia Symptom Perspectives;
i gather projects from Persons Living with Dementia
(often abbreviated PLwD, but in other contexts can also mean Persons Living with DysAbility).
i share those projects in various social media,
hoping they can increase understanding
and perhaps trigger strategy-search with care-partners and professionals.
i use the FaceBook page of Dementia Symptom Perspectives for FB sharing,
but also use it as my holding area until i get time to add each project to my spreadsheet of Links.
(A spreadsheet is like a computerized “Ledger” sheet or columnar pad.)
(See >> https://truthfulkindness.com/2016/03/01/pwd-matrix-topics-201510/ )

and today, i am trying to transfer from my “off-work” hobby of Family History.

i currently have way too many windows open, counting online Links, documents and spreadsheets. 
I kept opening Links, hoping for the key that would fit the puzzle to make them all work together.
All these windows hold pieces for current project,
but cannot pull all the concepts together in order to make sense of them,
so that i can save the information appropriately and close the windows.

And when i return to the desk after food, bathroom-break, chicken-care, (and especially sleeping, LOL),
my brain is like a clean slate, and i have extremely difficult time remembering even what the project is about,
and why i have all these windows open.

i try to use a document to track my actions, so that i can recover my thoughts,
but usually not very successful at chosing words that make much sense to me after a “project blink”.

i opened most of these Links 3 DAYS ago.
Took most of the next day trying to recover my thoughts and
was able to work constructively an hour or two of that day before bed.
The next day NOTHING was achieved
– unable to pull together any of the strings of thought that go with these many computer windows.
They have now been open 3 DAYS.
i have numerous Advocacy tasks that are important, so must get these windows off my desktop,
and i am despairing of ever pulling together these concepts
— but it is important !!!

i have not found this info collected anywhere,
and TOGETHER, i think it says …
i forget what i think it says, but something important about this ancestor or string of ancestors.

so today i will just copy all these Links into my General Family History document in a List, and give up for a week or so.

…

So on to the next task for the beginning week, and …

Cannot remember names of my friends (Persons Living with Dementia, or PLwD),
so that i can find their projects to share on Dementia Symptom Perspectives.

It might help to review my list with hundreds of FaceBook/Twitter friends living with dementia
(yes, i have a spreadsheet for that, LOL)
in order to find the specific name i am searching for.
But i realize it will take a lot of time searching for the bell of recognition.

However, today i cannot even remember how to find that PLwD matrix,
in order to begin the task of finding the Lady that sometimes writes on the intersection of dementia symptoms and faith.
If i could find my matrix then maybe i could search the term … what is that ??
i just had it …
Quaker !

Gave up and was telling Guy about the problem when her name occured to me; Shelagh.

But this matrix is crucial; it has a half-dozen “sheets” containing important information for Dementia Mentors,
(along with my Dementia Symptom Perspectives data
with thousands of PLwD project Links i have been collecting for the past 5yrs).
i have made the decision to work with half-dozen “sheets” for different topics — on one file,
so that i have less files to keep track of,
but now cannot even find that one file.

I have Dewey Decimal, so is it in 363 for Social Problems/Dementia Organizations/DSP, or 616 for Medical Problems/Dementia/Ppl with Dementia, or maybe 800s with Authors ?  i need to just make a desktop Link for this matrix and couple other files i use over and over again during the week … but then i am afraid i will forget how to use Dewey Decimal System, so lose access to my years of work in other areas.

Finally found matrix, and found her name in my matrix.  Her blog is https://fizzyhammers.com/ .
Horay.
Now that the day has been spent trying to find stuff,
i have finished my first (5 minute ?!!) task,
— in about 6 hours.

…

Life is just so VERY much more complicated and time-consuming with dementia symptoms.
.

SCHEDULE:

Hope to have more family time during the next six weeks, so i may skip some blog weeks.
THIS WEEK along with daily Dementia Mentors’ video chats, i may (or may NOT) join
.
Thurs DAA Discussions.
No DAA Discussion this week due to conference …

Also dont forget upcoming conferences below (which i will NOT be attending as i have no funding):
Jun 20-22: DAA conference in Atlanta GA on June 20-22 >> https://daanow.org and
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

Teepa Snow’s next video Zoom, “Lets Talk”, open to all persons with dementia, will be held Tuesday July 23.  Requires prior registration.  Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group. Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

i hope to attend Teepa Snow’s conference November 17-19 >> https://teepasnow.com/pac-annual-conference/ .

* 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 17Jun2019. Tags are: computer, confusion, dementia, Living with Dementia, PLwD, symptoms, technology.

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Effective Listening for Partnership

Posted on by

Tru here with A crucial conversation between my husband and myself, showing he was Listening (and APPLYING what he heard):

We were talking, but i was unable to process the conversation.
When he took a breath i held my hand out
and stopped his flow of words.

.

i told my husband that
all I understood were the first phrase of the paragraph
and the last phrase of the paragraph.
so all the sentences in the middle might just as well have been said
“blah blah blah.”

.

He quit talking.
He took me in his arms,
and after a moment he said,

.

“Okay, Look at me.
Are you listening?”

i nodded.

“I love you …
blah blah blah
… forever.”

((Sigh))

Then the waiting tears fell.
It is okay to cry.
Now I can pick myself up and move on.

.
.
.

This was part of a blog entry several years ago,
but with our anniversary
thought it was worth separating for a blog entry of its own.

EFFECTIVE Listening is crucial to good partnering (of any type).

.

SCHEDULE:

THIS WEEK along with daily Dementia Mentors’ video chats, i may (or may NOT) join
.
Tue 11 June: Dementia Chats with Lori LaBey. This is twice-monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience. Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .
.
Thurs 13 June: DAA Discussions.
This week’s topic is “Traveling Tips”. It will be hosted by Laurie Scherrer at 10am Pacific Time, 11 Mtn, Noon Central, and 1pm Eastern Time. These discussions are free and open to both persons with dementia and care-partners. >> https://daanow.org/our-initiatives/connect-and-engage-with-others/dementia-discussions/ .

…

Also dont forget upcoming conferences below (which i will NOT be attending as i have no funding):
Jun 20-22: DAA conference in Atlanta GA on June 20-22 >> https://daanow.org and
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

i hope to attend Teepa Snow’s conference in November, so keep an eye out for that.

* 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 10Jun2019. Tags are: dementia, Living with Dementia, partnership, PLwD, symptoms.

MyFreeCopyright.com Registered & Protected

 

i am Probably Asleep

Posted on by

Tru here on Saturday.
It has been three years since i have had one of these “events”

Sometimes begins with muscle weakness then moves to nausea etc,
but today’s Began about 10am,
with that feeling of time displacement that i associate with immediacy of brain problems.

You know on sci-Fi films,
when they show just a few moments of time displacement delay?

You are behind yourself, blurred, trying to catch up.
That is what it felt like for me.
Then muscle weakness and nausea followed within about 30seconds.
I didnt find my baby aspirin, but took the full aspirin sitting on countertop.

.*.

Truthfully i have few memories of the past 6 hours.
i know husband (Guy) brought me a cup of soup at some point,
and i ate a little bit before falling asleep again.
i know another time i walked a few feet to the bathroom
and almost didn’t make it due muscle weakness and nausea.
Then went back to sleep again.

i can only call it an “event”,
because even tho i have mild-to-moderate cerebro-vascular disease
doctors have not confirmed that these are small strokes.
They have extensively tested for seizures over the years, but not confirmed that either.
… so i just call it an “event” until we have more conclusions.

October 2016 i had an “event” during the last steps of the last walk i took by myself.
I was on return from the Harbor; it hit when i was almost to the door.
Got in the door and maneuvered to the couch.
We had company at the time, and they walked inside from outdoors.
i tried to tell husband what happened
but no sound came out, and folks were busy talking … so no one noticed.
i tried a couple times more, then fell sleep.
That’s Life.

Yes; i have tried going to hospital a few of the times,
but by the time i am actually seen they cannot really tell me anything.
They test and test and test, but never really any results.
Hospital visit means no rest;
cannot sleep in the waiting room, and too cold to sleep in Emergency Room.
That means the first full day of opportunity for brain cell renewal is Lost.
So unless blatant “stroke” symptoms like slurred speech or paralysis,
i just sleep and sleep and sleep.

.

After these events my walker is imperative (even inside the house),
as balance and muscle strength can be very unreliable for a few days.

After these events i sleep and sleep and sleep some more.
i figure cell renewal is only possible in sleep,
so any sleep after an “event” is a free ticket for better brain health.

I sleep as much as possible afterward,
usually sleeping almost the full first day and much of the next few days.
Often takes about a week of extra sleep
before i do not feel the need for extra sleep
(other than my standard late-morning-to-noon nap).

So you still wont see me much on FaceBook or other webinars, etc.

If i am not online … then i am probably asleep.

Sunday morning:  Slept total 18 hours yesterday; 10 hours during the day plus 8 hours at night.  Able to maneuver without walker this morning, but will not attempt doing outside chores.  Looking back over my notes from 2016 (when i had about 6 “events”) reminds me to keep the walker REALLY close for a few days, and delay any “exercise” for about a week.  Made some revisions to what i wrote, above, and i am headed back to bed.

So, even tho i am not online much this week, want to remind that You are important to me.

..

SCHEDULE:

THIS WEEK along with daily Dementia Mentors’ video chats, i may (or may NOT) join

DAA Discussions on Thursday.
This week’s topic is “Dementia Friendly & Dementia Friends Initiatives”. It will be hosted by Mike Belleville (with expert Tammy Pozerycki) at 10am Pacific Time, 11 Mtn, Noon Central, and 1pm Eastern Time. These discussions are free and open to both persons with dementia and care-partners. See you there ! >> https://daanow.org/our-initiatives/connect-and-engage-with-others/dementia-discussions/ .

…

Also dont forget upcoming conferences below (which i will NOT be attending as i have no funding):
Jun 20-22: DAA conference in Atlanta GA on June 20-22 >> https://daanow.org and
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

i hope to attend Teepa Snow’s conference in November, so keep an eye out for that.

* 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 02Jun2019. Tags are: dementia, Living with Dementia, PLwD, sleep, stroke, symptoms, vascular.

MyFreeCopyright.com Registered & Protected

UPDATE: ((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

Context of Appearance

Posted on by

Tru here.
How many teachers have reiterated the importance of context context CONTEXT ?

But since almost 20 years ago i am constantly losing context;
Losing the context of time.
Losing the context of placement or location.
Losing the context of words.

… and losing the context of appearance
(because i expect to see you the way you looked when i was younger).

There is a strange car in the driveway.

i know what our car looks like,
because we bought it just before we married.
We have two matching big blue vans,
and the car now in the driveway is not ours !

i have misplaced the newer context of what i see
… and i dont know where to find it.

.

Because i have dealt with this symptom for years now,
i know that i will not recognize any cars in driveway … and that is okay.
i know i will not recognize my husband in the morning … and that is okay.
i know that person in the mirror does not look like me … and that is okay.

.

if i do not recognize the way you look today,
that does not mean you as a person are not important to me.
For me, I still recognize the sound of your voice.
.
For 20years (before my brain began decline)
you almost always wore a State Parks uniform and hat.
You are now retired and no longer wear a uniform to work.
Your hair and beard are now white.
And we live in a different house.
…
But
You discovered green pants were needed.
You found and bought green pants
And sometimes i need a hat covering your head
in order for me to recognize the way you look.

… and that is okay.
because you are VERY important in my life !!!


.
THANK you for investing the time and energy in
Learning more about the situation,
then finding strategies
so that i can continue to recognize you,
my husband.

..

SCHEDULE:

THIS WEEK along with daily Dementia Mentors’ video chats, i plan to join

Tue 28 May: Dementia Chats with Lori LaBey.  This is twice-monthly recorded TEACHING series involving persons with dementia as experts in Lived Experience.  Let me know if YOU would like to participate >> https://www.youtube.com/playlist?list=PLyFH7iN6JFUE9oJFbRre0VAFbPWQFQcT6 .

Wed 29 May: Teepa Snow “Let’s Talk” is scheduled Wed. May 29: Free webinar session for anyone living with dementia who would like to share ideas, concerns, experiences, partner issues or successes. The topics will be determined by the group. Can be kind-of frustrating working with the registration process, but if you get stuck there is a phone number of someone to help. That is what i needed to do, and so glad Teepa Snow provides a helper for this process. >> https://teepasnow.com/services/online-learning/live-public-webinars/webinars-for-plwd/ .

29/30 May: Dementia Alliance International (DAI) Meeting of the Miinds webinar is scheduled with Neurologist Daniel Potts on Wed/Thurs May 29/30 >> https://www.dementiaallianceinternational.org/may-webinar-learnings-from-patients-and-families-by-dr-daniel-potts/ .

DAA Discussions on Thursday.
This week’s topic is “Hallucinations & Visual Perception”. It will be hosted by Chuck McClatchey at 10am Pacific Time, 11 Mtn, Noon Central, and 1pm Eastern Time. These discussions are free and open to both persons with dementia and care-partners. See you there ! >> https://daanow.org/our-initiatives/connect-and-engage-with-others/dementia-discussions/ .

…

Also dont forget upcoming conferences below (which i will NOT be attending as i have no funding):
Jun 20-22: DAA conference in Atlanta GA on June 20-22 >> https://daanow.org and
Jun 24-26: LewyBody LBDA conference in LasVegas June 24-26 >
> http://www.clevelandclinicmeded.com/live/courses/lewy-body-dementia/ .

But i DO plan to attend Teepa Snow’s conference in November, so keep an eye out for that.

* 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 27May2019. Tags are:  dementia, family, Living with Dementia, memory, PLwD, recognizing family, relationship, symptoms.

MyFreeCopyright.com Registered & Protected

UPDATE: ((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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