Why DAA Dementia Action Alliance as priority?

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Tru here.  Most persons who know me well realize that I have three dementia organizations in my priority list;
1) Dementia Mentors has top priority,
2) Dementia Symptom Perspectives =my project of sharing perspectives from individuals who have dementia, and
3) Dementia Action Alliance

If I am asked to invest in projects for organizations other than the above, my answer is almost always “no”, because I would need to re-assess time and energy priorities.

I have already shared about Dementia Mentors in many ways, but lately quite a few of my friends have been asking what makes DAA (Dementia Action Alliance) different than other organizations, and why I am willing to invest so much time and energy in these projects.   http://daanow.org/

Many dementia-oriented organizations have admirable goals and values, but for me there are three things that stand out about DAA, differentiating them from other good dementia organizations, which also have good goals:

  1. One thing is first half of the first goal from the five goals listed on the website; WORK directly with individuals who have dementia … 
  2. But top priority for me is the last half of the first goal listed;to learn from and amplify their first person perspectives about dementia.
  3. Fourth goal listed is “CREATE, curate and post free person-centered dementia support resource materials online”, which is excellent goal.  But to me the third important element which differentiates this organization is their definition of “person-centered“, … to include holistic emotional, social, physical, cultural, sexual and spiritual dimensions.

DAA puts priority on amplifying voice of PWD (Persons With Dementia), and that is a very high priority in my own life, and in my project of “Dementia Symptom Perspectives”.

I am a work-a-holic, and I come from a long line of work-a-holics.  Before joining the DAA Advisory Council, I had averaged about 150 hours per month in my “work” gathering and preparing Dementia Symptom Perspectives NewsLetter … along with my daily activities for dementia mentors.  That may not sound like huge investment to some, but considering the extra hours consumed by daily tasks with complications from dementia symptoms, my family was demanding I make a change.

Dementia symptoms were also complicating my abilities to complete the NewsLetter tasks, demanding greater and greater time investment until at last the NewsLetter was months out of date, and I recognized that I no longer had the ability to complete even that last issue.  I must drop the newsletter project WITHOUT a last issue.

At the same time in my life, early to mid 2016, opportunity at DAA arose.  It looked like there was a good chance I could share perspectives of those with dementia symptoms even more effectively as a member of the DAA Advisory Council, than I had been with the NewsLetter, so I was very happy to accept the position.  I am still spending hours gathering listings of projects from PWD Persons With Dementia, but no longer try to compile them into the NewsLetter, since I have lost those abilities.  Now I simply add them on my matrix, and try to share one project daily on Dementia Symptom Perspectives’ page in FaceBook.  From time to time organizations ask me to reference my matrix for an entry on topic they are looking for, and I spent about 20hrs at the end of year, re-organizing matrix to make it easier to access.  I am trying to figure out an efficient way to share the information.  During 2016 I did not keep up nearly as well with gathering projects, but in 2017 it has returned to higher in priorities.  Meanwhile I am investing in DAA projects to “amplify” perspectives from PWD.

“The DAA is a diverse coalition of passionate people creating a better society now for individuals to LIVE with dementia.”
This mission is well-reflected in past and current projects for the non-profit organization.

Past projects (some of which I participated in) are detailed at this Link >>  http://daanow.org/accomplishments/.

And current projects are reflected by the current workgroups at Link>> http://daanow.org/daa-workgroups/ ; Arts, Optimizing well-being, Technology, …

… And of course one of the primary current projects is the “Re-Imagine Life with Dementia” Conference being planned for June in Atlanta.  Link>> http://daanow.org/north-american-dementia-conference-technology-showcase/ .  At this time, 55% of the sessions include individuals living with dementia as a speaker, and WE (I am one of the speakers) will have profound information to share.  Personally, I will share a time slot with my friend, Laurie Scherrer, speaking on the compensation strategies we each use to live our best moments every moment of every day.

Caring Conversations in local communities is an important current project (Link)>> http://daanow.org/caring-community-conversations/

And the new Caring Conversation Toolkit (Link)>>http://daanow.org/product/daa-dementia-toolkit/ is now for sale.
Toolkit has booklet for Person With Dementia, handbook for family & friends, Conversation cards, and inspiring video. Each of these elements is also sold as stand-alone product (check bottom of page).   This series of products have just come out, and I am awaiting delivery of my own Toolkit (( smile )).

Caring Conversation Toolkit above is a product with a price tag, but anyone can watch the finished video project “Person-Centered Matters” (both 7-minute and full 16-minute videos) here >>  http://daanow.org/an-extraordinary-video-about-dementia/  .

All-in-all, I think the past and current projects admirably reflect mission, vision, and goals of DAA Dementia Action Alliance.

There are several levels of participation available with DAA.  Of course, money donations are always helpful, but personal involvement for Person With Dementia could be in the responsibility of Advisory Council (Link)>>  http://daanow.org/advisory-council/ if there is a current opening, or as Consulting Partner (Link)>> http://daanow.org/daa-partners/ , or simply participation in one of the work groups (Link)>> http://daanow.org/daa-workgroups/ .  All positions are deeply appreciated and have great input in achieving the goals above.

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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. With the new terminology my current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-02/01 with 6 hrs invested in text. Tags are dementia, DAA, Dementia Action Alliance, PWD, Person-Centered.

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Denial and One Sided Truth

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Denial is an organizational problem as well as a personal problem.  This problem is compounded when organizations and persons in our periphery are determined to promote only one side of “Truth”.

Tru here.  Since my last blog entry was expressing my anger at showing only the narrow, extremely negative side of life after dementia diagnosis, it is now appropriate to express frustration at organizations and persons that only share the most positive times and the most positive possibilities of life after dementia diagnosis, remaining quiet about the horror stories.  They have a right to determine their own policies and goals, but I think it often does the cause of advocacy a dis-service to promote only one side of the full picture.

When living with a dys-Ability
HOPE is crucially important for living each moment in a positive manner,
But … unless the person fully accepts a foundation of true REALITY
to build that hope upon,
their hope becomes a root for bitterness.

(Many quotes on subject of hope, and many on reality,
but cannot find anything similar to this in quote collections.
So I guess I will claim it for Truthful Loving Kindness on  January 29, 2017.)

Friedrich Nietzsche said, “Hope in reality is the worst of all evils because it prolongs the torments of man.”  Leo Tzu said “Life is a series of natural and spontaneous changes. Don’t resist them – that only creates sorrow. Let reality be reality.”  But, my favorite is Albert Einstein’s quote, “Learn from yesterday, live for today, hope for tomorrow.”  I truly believe that if you and your care-partners  do not learn from your own yesterdays, and the yesterdays of other Persons With Dementia (BOTH negative and positive) then, as a Person With Dementia,  any hope for a brighter tomorrow is false hope — and the root of bitterness all too frequently seen.

True education involves intimate acquaintance with the big picture; acknowledging ALL crucial factors involved.  Without true understanding & ACCEPTANCE of the negative as well as the positive possibilities “Living Well with dementia” is usually just denial and pretending.

All of us revert to pretending at times, and it is possible to use pretending — and acting on that decision — as a constructive tool.  But often pretending is disastrous for everyone involved, as it can produce denial and unrealistic expectations from everyone involved, including yourself.  Truth is that life is, in itself, NOT fair … and it never has been fair.  There IS lots of horror in our stories of dementia — if we tell the whole story.  But currently that is not the popular activist slant, so only shared by a specific section of advocates (like in the funding documentary I discussed in my most recent blog entry).  In my opinion, sharing only the”Living-Well” narrative is little better than the tragedy-only narrative, because in order to get to the “Living Well” stage, one must recognize the whole picture and CHOOSE to accept the negatives but focus on the positives of current moments.

To live for today, as either Person With Dementia, or care-Partner, we need to AGM4H.:  ACCEPT GRIEF MOMENTS … 4 HOPE

ACCEPT dys-Abilities:
Without acknowledging the negative aspects of reality,
and allowing ourselves to go thru the process of grief
— repeatedly, at each step of our growing dys-Abilities from dementia symptoms,
we cannot ACCEPT those dys-Abilities, own them as ours,
and find whatever work-arounds might be possible to live the best moments of each day.  

Own the GRIEF for tomorrow:
Grieving, owning today’s dys-Abilities, then owning tomorrow’s dys-Abilities thru anticipatory GRIEF ,
better allows us to personally participate in preparing tomorrow’s more severe work-arounds. 

Enjoy MOMENTS of today:
Confidence that we can relax about the future and anticipate hope for the best tomorrow in a realistic way
allows us to focus on the contentment from MOMENTS of today. 

… & Create HOPE 4 tomorrow.

Put these together; A.G.M., and then we have put into action Albert Einstein’s quote,
Learn from yesterday, live for today, hope for tomorrow.”  

Personally, I see many advocates unwilling to share stories from Persons With Dementia (PWD) unless the PWD is telling the positive slant that they want.
I have lived with dys-Abilities all of my adult life, and agree that most every human has dys-Abilities, whether they recognize them or not.  Most dys-Abilities among the public would be considered “invisible” disabilities.  In order to find work-arounds to continue life in the most positive ways possible it is important to recognize those dys-abling areas .  However, I have encountered a number of people who have the attitude “so what is the big deal; adapt, find strategies and live with your diagnosis just like the rest of us” — they really do not understand the progressive nature of dementia.  Few people have any concept of LBD’s hallucinations at early stages, and vivid night terrors that linger in the mornings, or looking at a loved one and being certain they are an imposter (capgras symptom).  Many people NEED to hear the horror side of the story, because telling only half of the story is not telling the truth, whether that half is the positive slant or the negative slant.

Even those planning on ending their own life need to have their stories told.  I do not agree with that decision, based on my personal theological beliefs.  But true education involves objectively sharing the horror story validating that decision to end a life, just as much as sharing our strategies for “Living well” despite growing dys-Abilities … it is the other side of the same coin.

Omitting one side of Truth is not really telling the truth, it is telling the PART of the truth that we find convenient for our personal goal.  I think an organization or person who promotes one side of truth over the other sides of truth, regardless of which side they are promoting, needs to recognize that fact, and own whatever consequences might occur for omitting other factors in the big picture.

I have the feeling that if I could retain these different paragraph thoughts, I could put them together in a more cohesive way.  But unable to retain them long enough to do that.  Same thing with the sentences within each paragraph LOL.  I recognize those facts, but I choose to focus on fact that, with assistance of reading them aloud, at least I can understand one sentence at a time LOL.  Putting together wording for this blog entry took slightly over 8 hours (plus breaks for dog etc).  Now I am ready to attempt a graphic.

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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. With the new terminology my current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-01/29 with 8hrs invested in text. Tags are dementia, grief, hope, quote, reality.

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Film Review for “Alzheimer’s: Every Minute Counts”

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Tru here.  Viewing titled documentary, “Alzheimer’s: Every Minute Counts” from position of slowly progressing cognitive symptoms that are still considered to be in Mild Cognitive Impairment range, strong symptoms of Lewy Body Dementia, and mild-to-moderate cerebro-vascular disease.  I lost two maternal grandmothers with dementia.  I lost my job and Driver’s License in 2000, after what we theorize was my first small stroke in February 1999, and have slowly decreased in cognitive abilities since that time.  Yes, I suffer with hallucinations, from not recognizing my husband a good part of the time, difficulty recognizing my image in mirror, balance issues, cannot drive, cannot use stove or oven, cannot babysit without another adult present, etc.

… Lots of things I CANNOT do, but there are also lots of things I CAN do; I am admin for Dementia Mentors, member of the Advisory Council for USA’s Dementia Action Alliance, and regularly appear on recorded Dementia Chats.  I care for my chickens (with back-up from husband in case I forget) and self-train a Service Dog to facilitate my recognition of husband, and help me know when something is a Lewy Body hallucination … or reality.  He will also be providing balance-assistance during my daily exercise (when he gets a little older).  I am a good grandmother, mother, wife, etc. and enjoy creating my own designs for both yarn projects and projects on paper.  Very busy lady watching this film.

Section A: Review of the film trailer …  BEFORE viewing the entire documentary:

I got very angry when i saw the trailer for film documentary, “Alzheimer’s: Every Minute Counts”, which is to be shown tonight by PBS (2017 Jan 25). Personally, I think this trailer exemplifies misunderstandings which produce the stigma that my friends and i fight most every day. The music builds anxiety, then words like “wither away”, “combative”, “escalate-violent”, “panic”, “going to kill us”, and “it will take us down”, add to the building anxiety.  Understand need to generate funding, and totally agree that finding cure for the various types of dementia is an imperative need, but this trailer feels like panic-mongering. Probably the majority of these are totally true words, and appropriate to some specific situations, but it seems that they are only choosing situations that have reached crisis-mode, as emotional tug-strings.

I hope they have counselors available to deal with the need from callers who are newly diagnosed and have not yet discovered that there CAN be productive life for an unknown amount of time after diagnosis.  It’s just that the new life after diagnosis has growing differences from how life looks before diagnosis.  And those differences get progressively more difficult as diseases progress.

Additionally, it feels like emotions from the trailer lump together the disease, and those persons who have the disease, which can create disastrous results.

Understand need to generate funding — but i feel that telling only end-stage SECTION of the dementia story, in this strong dramatic fashion, does much more harm than good.  Probability is very high that more people will watch the trailer than number who watch the entire show. Thus, effects from the trailer itself become an issue that very much concern me, and should have concerned the producer and sponsors, etc.

Section B:  * … *  AFTER viewing the entire documentary  * … *

Was able to watch early preview of entire show.  I would discourage those with new diagnosis from watching this film.  The first 10 minutes had me absolutely furious, but my anxiety level had much decreased by the end of the film.

At seven (7) minutes into the show Dr. Beau Ances, from Washington University School of Medicine talks about how “… it (Alzheimer’s) really goes to the essence of the person”; “It takes away … who that person is.”  Then he (Dr. Ances) states, “They (PWD) are really almost a shell of themselves.”

I exploded at that statement.  I object to, but can understand use of terms like “demented” (used later in the film) that feel demeaning but can technically still be accurate according to the dictionary. However a “shell”; Almost all of the person’s BEHAVIORS can be totally gone, but implying that the person’s true essence is gone and only “shell” remains is totally undocumented theory.  I have spoken about this earlier at https://truthfulkindness.com/bnp/part-3/bnp-3d-2012-u/20150125-chris-mann-remember-me/ .

Then, at 8:25 on the film, daughter Daisy Duarte says of her mother; “I lost … the Mom that had me … five years ago.  Alzheimer’s is my second Mom.”  This statement reinforces concept that essence of the Person With Dementia is no more — only their dementia symptoms exist.

So how the care-partner treats the Person With Dementia (PWD)
becomes much less important,
because that person no longer exists.

They are no longer caring for the person
— they are caring for the dementia.  (( growl )).

I have been the “loved one” so accept Daisy’s loss of her mother behaving in ways that she recognizes as motherly, but the wording on a national broadcast should be more responsibly presented.

 Remainder of film was not nearly as distressing to me.  It had some respected names like Dr Rudy Tanzi, and those persons gave good information, but even in remainder of film, a good part of the included scenarios were un-necessary misunderstandings from lack of anticipation for problems — lack of training and no mention of work-arounds.  Very few of us are allowed to use stove or oven past very early stages (for numerous reasons).  Unrealistic expectations ALWAYS produce problems, with any type of disease … in fact, with anyone from child or elder, … to employee.

It is always important to know who you are dealing with (including the dys-Abilities from any diseases) in order to anticipate problems and prepare work-arounds … but also to maximize benefits on both sides.  Unfortunately, this film does nothing to dissipate the huge misunderstandings of definitions, or variety for types of dementia.  It does not generate ANY hope except thru the channel of a cure.  To a Person With Dementia, the message is clear; you personally have no hope for quality of life.  Give us your money and die before YOU are the person causing more of this crisis from within your own family.  It is your responsibility as a responsible citizen … to get money for a cure, then die before you can cause more of this panic.

Personally, I think it is now the responsibility of PBS to compensate QUICKLY with a film comparing this documentary I just saw, “Alzheimer’s: Every Minute Counts” with another documentary showing that there is life after diagnosis for all the major known types of dementia; Alzheimer’s as well as Vascular, Lewy Body, Fronto-Temporal, and others.  This second film should show variety of symptoms, show Persons With Dementia using work-arounds in private life, and employers using reasonable accommodation to facilitate employment as long as that employee has abilities to complete both essential functions of their job and stay healthy in the other aspects of their life.  The second film should show variety in dementia progression, from very quick progression, to slow progression like with Christina Bryden, who is still active in Dementia Advocacy well over 20 years after diagnosis.  A number of my friends are past their hallmark of 10yrs after diagnosis with Alzheimer’s, Fronto-Temporal, etc, but still very active in speaking, mentoring, etc.  Personally, I think this life purpose AFTER diagnosis may be a strong contributory factor to the slow progression of their symptoms.  Yes; symptoms inevitably progress and then our current work-arounds no longer work.  Find a new work-around for each dys-Ability presented, for as long as possible !!  After no work-arounds are available to facilitate that project — then find another type of task or project that you can invest in.  Something that can make you feel valuable.

It would be great for PBS to highlight work from online PWD groups like Dementia Mentors and Dementia Alliance International, to highlight helpful FREE YouTube videos available from Teepa Snow, and material like the “Caring Conversations Toolkit” available beginning today from Dementia Action Alliance (which itself carries a strong goal of highlighting the perspective from PWD).  It is important to highlight projects like Gary Joseph LeBlanc’s Hospital Wristband Project and some of the other really important projects for CARE of Persons With Dementia, while the cureS are being sought.  (Because personally, I am convinced that there will be no one cure; it appears that even for just “Alzheimer’s”, there is probably more than one cause.  Additionally, there is high percentage, even among “Alzheimer’s” patients, of autopsy showing they had other varieties of dementia along with their Alzheimer’s, further complicating the issue of finding a single “cure”.)

Yes; funding is imperative, but this film seeks funding while ignoring (and sometimes at the cost of) CARE, which is also imperative.  I appreciate the efforts to highlight need of funding.  I appreciate efforts by each participant of this film.  But … I strongly feel that PBS now needs to compensate for what they did, by providing equally impressive film on possibilities for quality of life after diagnosis, and providing both films in a complimentary manner.

I plan to mail a copy of this blog entry and a copy of the “Dementia Success Stories” booklet (online version at https://truthfulkindness.com/dementia-success-stories/ ) to PBS and major producers; “After viewing your program, I thought that you should be made aware that there IS life after diagnosis”.
Appropriate LINKS:
PWD Patient Organizations:
Amplifying the voices of Persons With Dementia:
Dementia Advocacy created by PWD Norrms:
Associations for Various Types of Dementia:
My own Blog Entries:

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-01/25 with >6hrs invested in text. Tags are dementia, television, film, Every Minute Counts, Alzheimers.

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Favorite Films and WHY

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Photo from our school’s annual musical, which was “Sugar” in 1975.  Belinda Petrin is my birth name.

Tru here.  I already started my listing of favorite songs in 2015, but need to further follow up on George Huba’s suggestions given at https://hubaisms.com/2015/08/05/some-things-you-might-do-before-you-have-cognitivedecline-mindmap/

Suspect all persons who are at-risk for dementia of any type would be wise to make a notebook of Favorites.  Personally, I need to compile other favorites … and why; songs, films, crafts, locations, flowers, foods, transportation, forms of exercise, etc.  Including my own list as an example

*

FILM: Suspenseful music, violence, flashbacks, sub-plots, and multiple characters make it difficult for me to enjoy movies and shows, unless I have seen them many times. So on my cognitively highest-connecting days I will be adventurous and try new movies and shows, in order to get a larger listing of options for lower-functioning days when I need a repeat performance in order to enjoy watching TV. On my worst days, I enjoy scenery with music (not words), or the webcam at Monterey Bay Aquarium. http://www.montereybayaquarium.org/animals-and-experiences/live-web-cams/open-sea-cam .

In the past I have very much enjoyed dramas like Schindler’s List and The Postman. However, I suspect that I could no longer leave the movie playing.  I would need to turn it off or leave the room.
Even two years ago, I was able to enjoy the movie series with character Jack Ryan, based on Tom Clancy’s novels. In past few months, the violence and suspenseful music in some of them has become prohibitive. I need to turn them off before finishing. This is becoming true with more and more of my favorites, and I am turning to Disney children’s shows like “The Aristocats” and Rudyard Kipling’s “The Jungle Book” as alternatives. I remember putting together an acrobatic routine to songs from the Aristocats, when I was a little girl.  With my theatre combat classes as reference, love the choreography in the “Pirates of the Caribbean” series.  I think they are terrifically funny, LOL.  I have also discovered that I rarely enjoy movies that are categorized as “comedy”.  They just do not seem funny anymore.  So what DO I like, in order to build a movie library that I can enjoy in days that need to be slow days?

As some folks know, before I became a theatre major during my 30s, I was lead in our school’s annual musical during my senior year, “Sugar” (based on Marilyn Monroe’s “Some Like it Hot”) so that is probably top on my list.  https://www.youtube.com/watch?v=UgjzHp4TVtk

My ideal role has always been “My Fair Lady” (made famous with Audrey Hepburn) . https://www.youtube.com/watch?v=hYMSvyqHHwA .  I had script … and that script was memorized LOL .
Other musicals which myself or our family participated in (such as Oklahoma) also need to go on the list

Even before my great-grandmother introduced me to Louis L’Amour books at 6th grade, I have loved western movies, but obviously especially those taken from books of L’Amour, such as “The Sacketts“.  https://www.youtube.com/watch?v=QqRzW3VoSIc

Likewise, my husband’s favorite author is Edgar Rice Burroughs, so we were in theatre for opening night, and I regularly enjoy the 2012 movie “John Carter” of Mars. https://www.youtube.com/watch?v=eXBZ2YZiXXE

I am definitely a fan of original Star Trek, with my favorite episode “All Our Yesterdays” (#23 from Season 3). I also very much enjoy the recent Star Trek movies, so would like to invest in copy of each.

I terrifically enjoy music and ballet or ballroom dance, so anything combining them both is a special treat, like Mikhail Baryshnikov’s Nutcracker and Swan Lake. Or I like anything with Fred Astaire, but especially “Daddy Long Legs” (read it in probably 4th grade). Most any musical with dancing or a “crooner” will be enjoyed, but especially Bing Crosby’s “White Christmas”, and I also like the choreography in digital musical, “Polar Express” (with all the railroad references from my childhood when Daddy took me to work with him several nights a year, spending time with the “hoghead” in the engine and controlling the throttle). Love most of the cartoon musicals.  “The Phantom Tollbooth” was introduced by my toddler’s pediatrician while we lived in Vicenza Italy, and of course “Fantasia” must be added to the list along with “An American Tail”, which combines my love of animals, musicals and family history.

 

… so … you get the idea. Document your favorites, but I think it very important to include WHY they are your favorites; what significance does this film have with your history and person ?

What movies could you put in a movie library?  Because the day will come when we do not even realize we watched the show yesterday; it will be brand-new AGAIN !!

 

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SONGS: In 2015 started listing of songs and their significance in my life at https://truthfulkindness.com/2015/08/25/music-is-connection-dementia-symptoms/

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-01/17.  Tags are dementia, favorite, movie, television.

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Living in the Moment during 2017

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Tru here.
Kate Swaffer comment got me thinking about quotes to live by, which motivated these thoughts about living in the moment.

“TAKE ACTION on the fact that there are no erase and re-write buttons for your moments.

We can only live one moment at a time, so …

REMEMBER the past moments with fondness, and
ANTICIPATE the future moments enough to prepare,
… but don’t tackle tomorrow until it arrives.

TAKE SOME TIME.

ANALYZE to put your priorities into words you can live by.
CREATE something that will remind you frequently of those words, and
LIVE each moment in light of those priorities.
Only then are you best enabled to fully
APPRECIATE each moment while you are living it.

BUILD on the negative moments, as well as the positive ones.
Because the negative moments can either make or break you.

… TAKE ACTION on the fact that there are no erase and re-write buttons for your life.”
– TLK 2017-01/12

My perspective on adult life and moments probably began with toddlerhood and being told that the best way to prepare for being a Mommy was to ANALYZE behavior and actions of my own parents, neighbors and friends, and think about what works and what does not work in parenthood and early childhood education for life. Then, when I was 12 years old my father was diagnosed with cancer and given 2% chance of life. That changed my own priorities and first brought analysis of “What really counts in life?” >> “What really counts in my own life?”.  At 18 years old I was mis-diagnosed with a terminal disease. (I inherited fibromyalgia, and then first acquired several tick-borne diseases that year, after cutting trail for US Forest Service. At that time little was known about Lyme Disease and accompanying tick-borne co-infections from nature’s “dirty needle”, so it is now no surprise that I received a misdiagnosis.) This misdiagnosis created need to quickly take a look at my life at 18 years old. Analyze, prioritize, and put those priorities into action in order to live each moment that I still had, weighing my actions and thoughts by those priorities. Then I needed to find what work-arounds would help me continue living each moment to my fullest. So, most of my entire adult life has been lived with this perspective (except when I forgot or decided other needs were more important for the moment, LOL).

So I began with more vague set of life priorities and goals, which have become further clarified with each breathtaking discovery of who I was created to be, both genetically and environmentally. Each wonderful moment told me who I was in setting my priorities, and each terrible disaster further clarified it.

Naming has incredible meaning. When I was 50 years old, I took action on those priorities in a nomenclature way, and legally changed my name to reflect the English meaning for three Hebrew words, “chesed v’emet”. Now, when I hear my name, I am reminded of my priorities; what I want the sum of my life to reflect. How I achieve that differs in each moment, with the opportunities life’s circumstances bring … but “Truthful Loving Kindness” is what I most WANT to be – at my most basic core; “chesed” loving-kindness in the most truthful reliable way possible.

I wonder …
When I die, will my friends and acquaintances look back at my life and see “Truthful Loving Kindness” in each moment of my life … even after dementia symptoms peel back the onion to my most basic core (with all its human weaknesses)? I have made plenty of mistakes, and even spent several years with letting my area of weakness determine too much of my actions. Life has no re-write button, so what will the moments of 2017 show?

What will the moments of TODAY show? Right now, I will tackle the moments of noon on January 12, 2017. I will remember the past moments to make the best results, prepare as much as possible for the coming years, but LIVE this hour, this minute … and this moment.

 

Related LINKS:
819BMPB 2001 Willow Tree only 4in100ppi

 

Focus on Essentials at https://truthfulkindness.com/2015/02/24/dementia-change-priority-pathways/ ;


819 Blog 20150618a 11in080ppi

 

Self-Identity; Am I Still Me?  at https://truthfulkindness.com/2015/06/07/self-identity-am-i-still-me/ ;

819 Blog 20160126b commun 3in100ppi

 

Importance of Communication with PWD at https://truthfulkindness.com/2016/01/26/import-communication-pwd/ ;

 

819 blog 20150910b 4in150ppi

 

My philosophy on Personhood at https://truthfulkindness.com/2015/09/11/my-philosophy-on-personhood-and-dementia-person-personality-perspective/ ;

819 Blog 20150406 Perth 1a 3in130ppi

 

Value for Lived Experience of PWD at https://truthfulkindness.com/2015/04/06/value-for-lived-experience-of-pwd-as-contributor-to-dementia-friendly-community/ ;

 

616 blog 20150623Leona 3in150ppi

 

Impact of PWD Example at https://truthfulkindness.com/2015/06/23/impact-example-respond/ ;

 

819 blog 20150719a 2in100ppi

 

Time and Energy at https://truthfulkindness.com/2015/07/20/time-energy-consumption-dementia-symptoms/ ;

 

819 blog Grmy 20150901a 4in150ppi

 

Best-of PWD at https://truthfulkindness.com/2015/09/01/best-of-person-with-dementia-pwd-gone/ ;

 

lion-clock-courag-20161223-copy

 

Minute at a Time at https://truthfulkindness.com/2016/12/23/min-at-time/

 

 

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-01/12. Search terms: dementia, priorities, identity, quote, moment.

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Learned During 2016, for dealing with my own dementia symptoms

2016-by-tlk-20161231-8in100ppi

SUMMARY:
(There can be many similarities in dementia symptoms, depending on type of dementia.
But remember that every individual’s swiss-cheese holes can be different.
These are discoveries applicable for ME this year,
so it is possible they might be helpful for someone else.)

Communication/ Relationships:
Strategies for when both husband and daughter away from house.
Names are a temporary adaptation, for people, animals, and objects. So find adaptations.
Set time limits for each visit, whether at my home or yours.
Relationship with various belief systems may revert to earlier status.
Effective communication can be a stigma-preventative.

Arts:
My music can be either individual instrument or voice, but rarely both together.
Playing “pentatonic” instrument can be almost addictive for me.
Even tho no longer ability to do certain crafts, seeing those supplies still triggers my creativity.
Find strategies to complete or embellish “borderline” projects.
When low abilities, watching movies is limited to oft-repeated shows, or scenery with no words.

Medical:
Tiny strokes can carry a blessing of learning how to best prepare for next step of progression.
Various purchases I have found helpful

 

Below is the DETAIL for above summary:

Communication/ Relationships:

  • Strategies for when both husband and daughter away from house.

1). If both husband and adult daughter gone (to work, etc) for more than a couple hours, I have call-in system.  If I do not call/text assigned person on the hour every hour, then they will attempt to call me.  If they cannot contact me then someone will drive over to physically check on me.
2). Son bought chalk-board for entryway, so I can remind myself of where husband has gone and when he will return.
3). Husband has bought his first-ever cell-phone this year, so that I can call him when needed.
4). Daughter posts schedule for her and grandsons on the fridge, so that we minimize scheduling problems.

  • Recently discovered more problems with names. Name REPRESENTS identity – it is not the identity itself, so do not panic.

1). Went thru all the red tape and $500 to legally change my name nine years ago, on my 50th birthday. Now sometimes I am not responding until I am called by my birth name of Belinda or my nickname Bindy.
2). I named my new Service Dog trainee “Partner”, but do not remember his name and call him “Hero” (my first SrvDog) – so now quit trying to remember new name and he is “Hero Partner”.
3). Sometimes not understanding the verbal selections for foods. These are the times that I will need a “cheat” book of pictures for what the standard side-dishes look like, because I may not recognize the words for “french fries”, “hash browns”, etc.
4). Since I often do not recognize husband in social environment, dog has been trained to find him.

  • Whether at my home or yours, one hour must be the time limit for visits, or consequences are too severe for balance beam of cost vs benefit in the visit !! Maybe I should make a sign for entryway.
  • Decorating “Christmas” tree stands large in my emotional context of family memories, and since I am repeatedly asking why I cannot have one, I decided to resume it despite knowing that I have theological “reasons” for quitting the tradition.
  • I think that communication is primary pivot-point for all the major topics surrounding the “dementia” issue today, one of which is stigma. Suggest we change the conversation from how can we “avoid” stigma for Persons With Dementia … into how can we ENCOURAGE respect for Persons With Dementia? Preventing or resolving these issues requires effective communication between persons who have dementia, and persons who do not have dementia. Too often folks do not realize communication is possible, then they need to learn tools to maximize the possibilities.

 

Arts:

  • Sound distortion has progressed to the point that I may enjoy ONE or at the most two vintage songs on my Favorites list. I can never handle music simultaneously with movement or talking from other people.  I can seldom handle music with more than one instrument, so enjoy a cappella and solo instrumental most.
  • Because the notes in the Pentatonic scale all harmonize with one another, there are no wrong notes. This year my husband gifted me with a Hapi Drum. The tone is similar to singing bowls or musical bells; another soothing pentatonic instrument to go with my lap harp, which has also been revised to a pentatonic scale.
  • Creating makes me feel alive, so I want to THINK that I can do sewing and stuff for as long as possible (even after I am not really capable of doing it).  At this point, My tremors have become too severe to do any kind of painting, or mixing for designing fragrances, without help. My memory for the beginning process of crochet has become poor enough that I now often need help with the cast-on process of new project. We bought sewing machine early 2016 … which has never been used. … and I do not feel bad about it, because seeing it there is HELPFUL for my health !! Even if I never have another day that I both have time and am capable of using it.
  • I have a box for almost-complete projects, and projects that only need embellishment. This is for when I need to craft, but do not have much capabilities available. One element of this box is rather “empty” coloring pictures, that I can fill with zentangle patterns … THEN color. This creates a picture that is more entirely by me, because I created much of the design inside the very open picture which I started with. An example of “Zentangle” is included in the Links.
  • Film: Flashbacks, sub-plots, and multiple characters make it difficult for me to enjoy movies and shows, unless I have seen them many times. So on my cognitively highest-connecting days I will be adventurous and try new movies and shows, in order to get a larger listing of options for lower days when I need a repeat performance in order to enjoy watching TV. On my worst days, I enjoy scenery with music, or the webcam at Monterey Bay Aquarium. (See link in listings at bottom of entry).

 

Medical:

  • Tiny strokes have given me an opportunity to prepare for symptom progression in a gradual way.  Compensation strategies and projects previously assigned to “the week after” gradually become integrated into my “new normal”, then new lower-level strategies/projects need to be found for during the week after an event.
  • Because phone reminders are too numerous to be constructive, have resorted to alarm clock for sleep meds
  • Cooking times chart on microwave, but problem remembering to use cooking glove (and HOW to use potholder, when scrambled). Had used pre-measured motel coffee packets & motel-sized coffee pot. Now using Toddy Cold-Brew Coffee which means nothing hot to maneuver.
  • We use blue-lid storage containers now for foods which meet my dietary restrictions, foods that do not meet those dietary restrictions have red lid. Cupboard doors removed in section of kitchen that holds supplies I use. (In son’s house, he painted cupboard doors with chalkboard paint, and that might be an option at earlier stages. It no longer works for me.)
  • …. Non-spill mug for me (16oz Aladdin Insulated Plastic Mug $11 Amazon)
  • Walker tray, so that when I am unsteady and need walker in house, I can carry things with me. (Yunga Tart Walker Tray on Amazon for $21.50)
  • EZ Laces No-tie, reflective, elastic shoe laces ($8 on Amazon).
  • Lots of wonderful night lights 😀
  • Fender Musician Series Ear Plugs – only the bullet-type work for my ears with extra-small canals ($7/pair on Amazon)
  • White Stag Women’s comfort-waist pull-on pant ($17 Amazon)
  • BSN Syntha-6 Isolate PROTEIN powder drink – Ice Cream flavor ($30/24 srvgs Amazon.

Remember:

Every aspect of life has a balance beam of cost vs benefit, and must be analyzed according to individual priorities of life. – Truthful L. Kindness 2016-12/30

 

LINKS:
https://truthfulkindness.com/2016/11/30/symptom-progression-strategies-2016-dec/ ;
https://truthfulkindness.com/2016/01/26/import-communication-pwd/ ;
http://hubaisms.com/2015/08/05/some-things-you-might-do-before-you-have-cognitivedecline-mindmap/ ;
https://truthfulkindness.com/2016/03/29/stigma-or-respect/  ;
Arts LINKS:
http://www.montereybayaquarium.org/animals-and-experiences/live-web-cams/open-sea-cam
MUSIC:
https://truthfulkindness.com/2015/08/25/music-is-connection-dementia-symptoms ;
https://hapidrum.co/hapi-drum-mini  ;
https://www.amazon.com/Mid-East-Nevel-Harp-with-Case/dp/B001D1WZ12  ;
https://www.youtube.com/watch?v=aub51qOyGtQ&feature=youtu.be  ;

ZENTANGLE: examples: https://truthfulkindness.files.wordpress.com/2014/10/20130723-zt-copy.jpg ;
Zentangle patterns: http://tanglepatterns.com/ & https://www.pinterest.com/tkindness/7454-doodles-n-tangles/ ;
Zentangle OPEN patterns2fill: https://www.pinterest.com/tkindness/745-open4-zentangle/  ;

Graphic: This “2016” frame by Sandy Hunter, specifically designed for filling with Zentangles.
Then I picked patterns for each digit of “2016” at http://www.tanglepatterns.com/
“2” filled with “CloudFall” by Linda Farmer (this pattern is almost too complicated for me);
“0” filled with “Pixioze” by Margaret Bremner, from design on hotel carpet;
“1” filled with multiple patterns;
“6” filled with “Florz” pattern by Marie Thomas

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-12/31 with 20hrs invested. Search terms: dementia, strategy, communication, arts, relationship.

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This Holiday Season Context of History and Symptoms

20161227e-4in100ppi

As little girls, others played with their Barbie dolls.  Instead, I created my index cards of historical and Biblical events.   I love history; history of words and history of events.   So I guess it is only natural that I devoted about 10 years of my life to Family History.

So, for me the Holiday Season is very wrapped up in Family memories, context in ancient scriptures, AND Family History.  My holiday season begins with ThanksGiving, and stretches thru to the twelfth night of Christmas, January 6.   So, while many of my friends have removed their holiday decorations by now, for me this is the middle of the Chanukkah/Christmas season.

This year’s changes in Holiday celebration.

  • Eight years ago, I began worship in the Jewish “Reconstructionist” tradition (but, for me including quite a few beliefs from Messianic, Chabad, and mystic Kabbalah). I remember that I have a theological reason, but when I ask why I quit having a tree, I forget the answer within a few minutes. I really enjoy the colored lights, ornaments, and tinsel, so with my extra tummy pain and fatigue from Lyme treatment this year, decided I would now resume the tradition of a tree.  This is my first Christmas Tree in almost 10 years (a German tradition, so it is in honor of my German paternal grandmother, Florence Michaelis). Since she used a plastic tree in later years, my grandmother often kept her Christmas decorations up until Candlemas on February 2, which was not surprising given both her parents were from Germany.   Then she sometimes switched ornaments and tree was full of Valentines for February. One year, the first day of March she replaced the Valentines with stuffed birds set inside nests she found prior years, and put her tree away the end of April, LOL. I especially enjoy the memory from the one year my workaholic father was home for decorating the tree. That year I was 11 years old, shortly before his cancer diagnosis, and he was too sick to work. We sang Carols as he lay on the couch, looking in the eyes of each one of us individually as he handed us each ornament. … So a decorated tree stands large in my emotional context of family memories, and I decided to resume it despite my theological “reasons” for quitting the tradition. This year, our tree ornaments will be removed and the tree will be taken to the porch for eventual re-potting … on the 12th day of Christmas; January 6.
  • I am trying to find holiday songs in a form I can still enjoy despite dementia symptom of sound distortion – so looking for either solo instrumentals, or acapella voice.
  • Since our children have become adults, we mostly quit giving holiday gifts – except for our young grandsons. But this year, during weekly Family Chat with Harry’s dementia Forget-Me-Not group, husband gave me a gift; a mini HAPI pentatonic drum. This has vibrating tongues of steel creating notes of sound, arranged so that each note is surrounded only by notes that are musically compatible with that individual note. The tone is similar to singing bowls or musical bells; another soothing pentatonic instrument to go with my lap harp.
  • As my dementia symptoms have progressed, so has my intolerance for noise and bodies around me. So, while a few years ago I could enjoy longer visits from loved ones, this year I discovered need to have visits limited to less than one hour, and fewer people. Must make restriction despite mutual enjoyment of spending time together, otherwise consequences are too great. I expect that time restriction will continue to increase as my symptoms progress.

 

LINKS:

819 blog 20151214a spiritl 4in50ppiLast year’s Holiday update:  https://truthfulkindness.com/2015/12/15/spiritual-journey-dementia-symptoms/

Drum: www.hapitones.com  & demo at https://www.youtube.com/watch?v=cKdesbJiz0M

12 Days: https://en.wikipedia.org/wiki/Twelve_Days_of_Christmas

 

OTHER by PWD:

Laurie Scherrer: https://dementiadaze.com/2016/11/29/dementia-christmas-tree-analogy/

Kathleen Anduze: https://vimeo.com/193966991

George Rook: https://georgerook51.wordpress.com/2015/12/15/boing-boing-boing/

George Huba: https://hubaisms.com/2015/11/24/dementia-and-big-family-holidays-mindmaps-on-the-enjoyment-of-all/

Judy: https://www.facebook.com/208968049513072/photos/a.209532316123312.1073741828.208968049513072/216031178806759/?type=3

Jean Lyon: https://www.facebook.com/truthful.kindness/posts/10205052286285391

Myself: https://truthfulkindness.com/2015/12/22/drt-background-noise-2015-12/

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-12/27. Search terms: dementia, holiday, Christmas, celebration.

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A Minute at a Time

lion-clock-courag-20161223-copy

Tru here.  7:30am.  This entry started out as a FaceBook update, and turned into a blog entry.
Started this latest bout of Lyme treatment 10 days ago (on Friday the 13th).  My tummy is now queasy more and more of the day.
Today I feel horrid … and have not even started my day.  Since it is the day before holiday activities begin, today promises to be one of those with strong challenges even if I did not have concentration complicated by neurons too “busy” by dealing with pain signals to carry my thoughts.  … and even if my thoughts were clear and not complicated by dementia symptoms of various kinds.
Ugggh ! It is one of those weeks that is not a day at a time, but an hour or a minute at a time.
“Okay Tru, accept what is … (for these next few minutes) then >> focus on what IS possible, get out of the pity-party ditch and get started doing it !!”
Getting STARTED on days (or even hours / minutes) like this, without the debilitating platitudes of denial, is one of those times I will accept the “Courage” award.  It is now almost 8:30.  Starting graphic for this blog entry, and at 9am or 10am, YOU get the award, because maybe my challenges will have decreased by then … okay?  LOL  😀  — Tru
(Found free coloring pic at http://www.momjunction.com., then with photoshop I added the clock from my desktop.   Later in the day, when I am too debilitated to tackle any of my projects, I will add some doodles to my lion clock, and color it.)

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-12/23. Search terms: courage, pain, pity, discouragement, dementia.

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I Soak

Tru here.  After several prior bouts with tick-borne diseases of Lyme and Babesia, due to another exposure i am now going thru the extra fatigue and nausea from Lyme treatment AGAIN.

When life gets overwhelming, i soak.

… i soak my aches & pains … in the spiritual water of prayer communication (different than just request, with many periods of no words; where i am just soaking up the feelings).

… i soak my dry worries … in the refreshing water of meditation (since meditation and worry are two sides of the same coin).

… i soak the discouraging aspects from my day … in the encouraging awareness of blessings.

…  and WHILE i am doing these things,  i soak my moments … with the soothing (yet invigorating) touch of warm water and personalized fragrance, carressing each cell of my body.

I SOAK, then i drain the dirty water; I drain away my pains, worries, and discouragements … leaving my soul and body soothed, refreshed, and smelling like me again.

20161214-tub-3in100ppi-copy

As you can see from photo, husband has already invested many hours in sanding, staining, and putting water-resistant finish on doorsills, window sills, wainscoting,  and special planks under the tub.  Woodwork is not quite finished enough to add the chair rail, edgings, and handrails, but …

Son’s visit during Thanksgiving holiday gave an assistant for my husband to help move our clawfoot tub around, hook up the plumbing, and arrange for me to use it.  So i no longer need to climb stairs in order to soak.  Happy Lady for Thanksgiving blessings !

 

I plan to make a poster of these thoughts, to remind me how much i enjoy bath time.  (Because sometimes each one of us can get stuck in the ditch, and postpone or neglect the important things of life — such as renewal.)

* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-12/20. Search terms: renewal, encouragement, Lyme, dementiaMyFreeCopyright.com Registered & Protected
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Symptom Progression and Strategies 2016 December

20161212a-3in100ppi

Tru here.   I realize it has been a month since I have last written a blog.  There is a good reason these have been less frequent;  Doctor and I just call them “events”, but current theory is that I am having tiny strokes.  Part of my current diagnosis is “mild to moderate cerebrovascular disease”.

First event was probably mid-February 1999 (year before they first pulled my driver’s license and awarded me permanent physical and cognitive disability).  Most recent was about 10 days ago.
Frequency has slowly progressed from every few years, to every year, to every few months … then every month, and now three events in six weeks (every two weeks).  Consistently, after each event I experience almost a week of dramatic fatigue and more severe cognitive symptoms.  So currently I am at 50% of “my new normal”; one week on … then one week off.  The day after an event I will sleep almost 24hrs, then need progressively less sleep every day until I am back to my normal sleep needs in about a week.
So some compensation strategies have been needed:

ALONE:  If both husband and adult daughter gone (to work, etc) I have call-in system.  If I do not call/text assigned person on the hour every hour, then they will attempt to call me.  If they cannot contact me then someone will drive over to physically check on me.  When husband leaves me in house, the chalkboard on wall at door reminds me where he has gone & when he will return.  When husband leaves me while we are traveling, he writes same on cloth chalkboard my sister made me (that sits in door of car).  Too many times i went looking for him because no idea how long i had been sitting in car.

CLOTHING:  During the week after an event, I am more likely to have problems dressing.  I find my tool of adding a heart with permanent ink on top back of my underwear, and yarn loop on top back of all my turtlenecks really comes in handy, because I have a more difficult time orienting the piece of clothing to how it belongs on my body.  These things tell me where the top back is for each piece of clothing (and make it easier to hang on the hook night before).  At this point in progression, once I correctly orient where the clothes fit on me, I can get them on myself.  During that week, we need to be really diligent about leaving wardrobe doors open so I can see the hook where I hang my clothes for the upcoming day, and my drawers are always left open in step-over fashion, making my underwear, socks, etc visible in the various drawers of my antique wardrobe.

CRAFTING:  I don’t try beginning a new crochet project during the week after an event, because I often forget how to “cast-on” during that time.  Instead I will work on projects that I have already started.  During my “normal” days, I am very busy with family and advocacy projects, or with more detailed craft projects such as frilly crochet collars or gifts of fragrance, but during the week after an event I am incapable of my more complicated projects, so then I indulge some of my more time-consuming projects like Zentangle and coloring.  I can add Zentangle-doodles to coloring sheets that I have printed on thick paper (like VERY simple basic shapes of blank coffee cups or gingerbread house frame) then color embellished Zentangle projects that I created.  One crochet project for “later” is a bought black open-work lacy crochet jacket, which I have embellished with light purple crochet ruffles along the edges of front, neck and sleeves, only leaving a bits of it unfinished in various places … so that I can feel the accomplishment of finishing a beautiful project, even tho I would not have capability at that stage if it was not mostly done.

FILM:  Absolutely no movies or TV that are “new-to-me” are comprehensible at all, during the week after an event, but I enjoy scenery film and after the first day or two I will enjoy oft-repeated movies (for me, including Ice Age series and John Carter of Mars — since my husband and I spent hours reading Edgar Rice Burroughs or Louis L’Amour aloud to each other during years gone by — or one of the classics such as My Fair Lady).  So, since my frequency increase has made me more aware of need, I am trying to watch more movies during my “good” week, in order to have greater library available of often-washed shows during the week when my advocacy abilities are very low; when I have much more time available.  Need to find some of the Louis L’Amour movies on disk for my library, and some of the other classics — and maybe some with ballroom dancing, or sea turtles.

MUSIC:  My largest music change is that during the week after an event is when I will most frequently want my “Nevel” lap harp (which I have removed notes F and B from, creating a pentatonic instrument, see my video).  I can never handle music simultaneously with movement or talking from other people.  I can seldom handle music with more than one instrument.  I enjoy a cappella and solo instrumental most.  Even tho in my younger years I greatly enjoyed some of the more raucous groups like The Doors, etc, I can never enjoy them now — instead of sympathizing with the driving need in me (which still exists LOL) it intensifies my confusion and frustration.  During my best cognitive days I can sometimes handle symphony orchestra, but rarely for more than one or two songs.

READING:  The first few days after an event I cannot register any more than a sentence or two before words no longer make sentences but are only stand-alone entities … then things improve to my “normal” reading level (of ~5th grade comprehension) in about a week.  The last of that week, I will begin enjoying books that I have frequently read in the past.

TRAINING of Service Dog:  This on-again and off-again process has created huge complications in training of my 4-month-old service dog trainee, “Partner”.  Largest problem has been his terrifically high energy level at this age, creating need of physical activities to work off that energy in order to calm down and learn task.  So I have been working on getting him comfortable with the … walking machine (always forget name of it — one of my brain’s swiss-cheese holes).  So far, Partner will walk on it when the machine is off, and walk next to it when the motor is running … but not walk on it when on.

WALKING:  One of the events last month was during my mile walk along the ocean cliff (1/4 mile from our home).  I was using canes and developed weakness in left arm and left leg, nausea, and dizziness.  So I no longer go on walks alone … period.  I now use walker instead of canes when someone accompanies me on walks.  During the week after events, consistently discovered very unwise to walk half mile even 5 days after event, and when walking in the yard I have too often gotten trapped by moments of either extreme fatigue or simply too scrambled to move with coordination, so during that first week I no longer even move chickens to or from chicken house without checking in (both before & after) with someone either in the house or on the phone.  So about 8 days after event I will walk half-mile, and increase length of walk in increments (to avoid increased leg/foot cramps).  Since event frequency became every-other-week, my longest walk was 1.5 miles at 13 days after event.

WORDS:  Much more frequent problems in understanding meanings of spoken words during week after an event.  These are the times that I will need a “cheat” book of pictures for what the standard side-dishes will look like, because I may not recognize the words for “french fries”, “hash browns”, etc.

 

  • MIXED  BLESSING:  Looking back, I can see that a good majority of my “first-time” symptoms have been during the week after an event, so now new symptoms are not all that surprising.  Also, this process has given me an opportunity to prepare for symptom progression in a gradual way.  Compensation strategies and projects previously assigned to “the week after” gradually become integrated into my “new normal”, and new lower-level strategies/projects need to be found for during the week after an event.

Note:  I think this last event (about 10 days ago) hit my brain in an emotional area.  I am basically a very content and stable person, with few dramatic emotional swings.  My brain is one of the ones that has low need for serotonin, since it requires less of the chemical for me to “feel good” (and in fact, what many brains would see as exciting in a positive way, my brain perceives as negatively stressful).  But I did not even notice any of my usual physical symptoms during this last event.  I just began having wide emotional swings and went into the week of symptoms that FOLLOW each event.
* 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 Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2016-11/30. Search terms: changes, dementia, symptoms, stroke, strategy

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