EMT 4PWD communication

“About us — without us” feels like manipulation.

Professionals (especially medical professionals) need E.M.T.
… for direct interaction with Persons With Dementia:

E= education/skills;

M= motivation/understanding;

T= time.

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Tru here.  My first neurologist was splendid … but then retired.  The next year, the second neurologist gave me conclusions but not raw scores after i took their neuro-psych.  I suspect they thought withholding scores would force me to their office for all further visits, in order to provide comparison over time  — WRONG!  Never returned so went without comparison.  Took two years but found another neurologist.  Traveled 3.5hrs each way to get to him.  Quit my third neurology specialist on the second visit.  i gave him two visits because he would not slow down to talk WITH me on first visit.  But twice during second visit, i asked him to speak slower and pause between change of subject so that i could catch up with his thoughts.  Instead, he gave up on me, turned to my husband and spoke only with him for remainder of appointment.  So i fired his behind !  Took a year to find another specialist.  He is a jewel; communicates directly and openly, showing me respect and treating me as a partner in my own care.

Much of our interactions with doctors and professionals leave persons with dementia feeling left out from our own care team.  Without DIRECT communication, we are not allowed to be a partner, which does not build our cooperation in the process.
Many of my friends are no longer willing to see the doctor.  Why should we, if the doctor will not interact directly with the patient?

E.M.T.

E= Education for direct communication involves direct contact with Persons With Dementia during education process; with their first-person feelings and experiences …
in order to build communication skills that successfully work around cognitive and sensory dementia symptoms.  See links at bottom of page.

M= Motivation builds understanding for WHY professional should show respect for our humanity and make us a partner in our own care, by interacting directly with Person With Dementia.

T= Making TIME available for direct communication.  Professional might ask person to arrive early if they would like, and supply paper and pen to write down most pressing concerns they wish to share.  That gives extra time for person to find the words, because extra time is almost always required to work around dementia symptoms.  Another example might be to try using visuals when words don’t work.  My husband uses visuals for any numerical concept, geographical or distance concept, and descriptions.

 

There are wonderful exceptions.  My General Practitioner is a wonderful exception.  But searched for neurology specialist quite a while before i found someone willing to be completely open on subject, and speak directly with me.  This is too important of a specialty to settle for second-hand communication !

Reviewed lots of dementia research paperwork past few days for Dementia Action Alliance project on subject of “care”, and what hit me was that it felt like the research was entirely “about us — without us”, by medical professionals.  Felt like persons with dementia were merely THINGS; subjects of study; no longer considered valuable thinking feeling beings … but merely objects !  Researchers were the valuable stakeholders, but patient was not valued at all  — and not considered a stakeholder at all, so no “care” (or consideration) was shown to make them a partner in care.  Made me angry, and my primary response to anger or grief is writing.  So i wrote, and this is what came out.

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LINKS:

ECT Suggestions >> https://truthfulkindness.com/2014/12/12/suggestions-understand-audio-communication-dementia-symptoms/

Importance of >>  https://truthfulkindness.com/2016/01/26/import-communication-pwd/

 

 

Category: Important/Communication: https://truthfulkindness.com/category/important/communication-important/

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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 2017-05/22. Tags are dementia, communication, professionals, research, and partnership.

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Teaser from speech on Person-Centered Compensatory Strategies

Teaser excerpt from my planned “Person-Centered Compensatory Strategies” speech;

Tru here.  One method for predicting helpful strategies
is capitalizing on the thinking processes which work best
— and minimizing reliance on those that work least, so …

… for this slide we used just one category of my Neuro-Psych scores, compared over time — math.
I was in gifted math during grade school, Business Student of the Year in High School, and worked in Accounting.
So my math started out very high.

Even after i lost my job from what was probably my first small stroke, arithmetic was still at 75th percentile.
That means my math was still better than 75% of others with 2yrs college.
But as you can see it’s now dropped to 5th percentile.

Ugggh!!  Numbers, numbers, numbers!
I no longer understand numerical concepts over about ten.
Numbers 75 and 57 sound like the same amount to me,
and the numerals look like the same amount.

But remember my visual processing is still extremely high, and abstract thought is still high?
So the work-around is this;

Husband makes a pie chart, graph, or picture for the numerical concept.
Then we still have communication.

 

Example:
I was feeling neuro-psych testing was a waste.
So husband put together a graph for each score, with comparison thru time.

When i looked at all those graph pages with decreasing bars of color on them,
then i could see that neuro-psych testing was truly reflecting my cognitive loss
… so maybe it was not a waste of time.

 

You might consider how Neuro-Psych scores could help YOU tailor strategies
… at least until conditions change again.

George Huba is a person with Fronto-Temporal Dementia who has a PhD in Psychology.  His communication and scheduling ideas capitalize on visual processing.  Check out some of his blog entries at https://hubaisms.com/

 

You won’t want to miss this important dementia conference and interactive technology showcase for June in Atlanta!  Dementia Action Alliance conference info is at >> http://daanow.org/north-american-dementia-conference-technology-showcase/

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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 2017-05/15.  Tags are dementia, strategy, Dementia Action Alliance, conference, numbers.

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Top tip 4PWD: Grieve2Accept Dx n Find Purpose

Tru here.
G2AP: What do i consider the most crucial tip for Persons With Dementia?
(1) Grieve in steps, … to (2) Accept reality, & (3) find Purpose.

“Must first
(1) GRIEVE incrementally, with each step in loss of abilities, behaviors, & expectations,
… in order to
(2) ACCEPT life as it IS and
(3) Find PURPOSE in current life.”
— Truthful L Kindness 2017-04/19

 



GRIEVE incrementally, with each step in loss of abilities, behaviors, and expectations,

“Saying goodbye to the things we once did, is so hard to do” — Harry Urban 2016-03/14

Sometimes we forget that (like most grief) living with dementia brings a type of grief that is a process; not an event.  As each new symptom appears or intensifies, we need to go thru the grief process again.

Usually the first time a symptom shows up is when i am sick or extra tired … and it is shocking.

The first time i did not recognize husband in public.
First time i did not recognize room of my house.
First time i did not recognize husband at home.
First hallucinations, etc.
But then it happens again
… and then the frequency increases until it becomes my “new normal”.

This is my new pattern of loss:   (a) Increasing frequency of loss.  (b) Increasing intensity of loss.  (c) Increasing experience of loss and grief, in order to bring … (d) Increasing appreciation for the blessings of life.  This grief must be recognized and dealt with in healthy ways in order to get past it and CHOOSE to focus on the blessings of life.

Sometimes the first stage of this grief feels like fear or anger.  It can trigger flight or fight adrenaline.  Before tremors were so bad, when this happened i could turn it into a productive act and cut kindling.  Now i can no longer handle spoon & fork well, let alone an axe or hatchet (LOL).  But if i am doing well enough and service dog trainee is not super-energetic that day, then he and i can take off walking down the gravel road to the harbor.  If pup is too full of energy and pulling me off my feet, then i will get on treadmill (which has extra-long support bars for balance).  Then … after i have worked the adrenaline off …  once in a while
…  I cry.

Sometimes i not only cry but i DESPERATELY cry, desperately pray, hug my fuzzy dog for long periods of time and go out with my pet chickens competing to sit on my lap … crochet with extra-soft cuddly yarn, or draw.  If these emotions hit late at night i will play my lap harp.  If while i am in the car then i grab my stuffed animal off the dash and stroke it while the tears fall.  It is okay to cry.  In larger perspective I consider it renewing because …Once i acknowledge and consciously experience the grief then, as they occur, i can use these repetitive symptom events as reminders to find compensatory tools and strategies for self and others to live as well as possible with the time we have available.  …  until the next round of grief comes due … then must experience it also, in order to get past it.

…  I choose to focus on life’s blessings (and the blessing in window of time for advocacy).
But in order to do that i must pass THRU and endure the grief.
Both are an important part of the complete process for keeping my life in a larger perspective.

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.

Truthful Loving Kindness on  January 29, 2017

Harry Urban: “When you lose the things you taken for granted all your life, the reality of your disease takes hold.” — 2015-09/21  …
Gord Settle: “Sometimes you just have to let go”. — photo also by Gord Settle on 2016-Jan-03

Further detail at: https://truthfulkindness.com/2017/01/30/denial-one-sided-truth/  .
and examples at: https://truthfulkindness.com/2016/05/08/first-time-of-where-am-i/
https://truthfulkindness.com/2014/11/10/melancholy-day/  .



 

Fully ACCEPT reality

Must fully accept the negative aspects of the life we are now living before we will be able to accept and fully utilize the positive aspects of our current opportunities.  Both are part of the picture, and they come as a package.

“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.
Otherwise, ‘Living Well with dementia’
is usually just denial and pretending.”
— Tru 2017-01/29

Robert Bowles has a new meaning for ASAP.  “A = Acceptance, S = Socialization, A = Attitude and P = Purpose.  I have found these four things to be the foundation of my living with Lewy Body Dementia (LBD) well.”  — Robert Bowles 2015-01/31

Harry Urban says:  “Like most people I went through the stages of denial, anger and over a period of time, I finally found acceptance with my diagnosis. It was not an easy journey finding ways to live beyond what I thought was a death sentence and found many of my friends and especially relatives have abandoned me and left me to fight my disease alone.”  — 2016-06/28.   “The first hurdle to cross is the acceptance of your diagnosis. This doesn’t mean you like it or you are giving up
but rather you are open to the options and changes you will be facing.”  — 2016-05/12.

“Only you can take that giant step toward acceptance of dementia, that is not saying you have to like it.
You have to believe that there is life beyond your diagnosis
Don’t wait until it is to late to adapt to your new life.”  — Harry Urban 2015-04/05

Kelli McGowan: “I’m not escaping it
I’m embracing it” — 2016 Jan 28.

Robert’s ASAP blog entry is at >> http://lbdlivingbeyonddiagnosis.com/blog/asap  .



Find PURPOSE in current life

Your post-diagnosis purpose (or plural purposeS) may be continuation of pre-diagnosis purpose … or there may be brand-new purpose.

On learning he had terminal cancer, neurologist Oliver Sacks wrote, “I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. … I shall no longer pay any attention to politics or arguments about global warming. This is not indifference but detachment — I still care deeply … but these are no longer my business; they belong to the future.”

After developing dementia symptoms over the previous 12 years, on learning my dementia was probably irreversible and progressive, I re-evaluated my priorities.  Like Oliver Sacks, I discovered a feeling of detachment for politics and other issues over which I had little control.  I mostly lost interest in anything that was not in my own sphere of influence.  Oliver Sacks put it well; it is no longer my responsibility.

Again we are back to “person-centered” because each person is so very different.  But when we receive a life-changing diagnosis it can trigger a re-evaluation that sometimes reveals obvious priorities that have been subordinated to “time-urgent” everyday trivialities.

At your own deepest levels, what drives YOU?  Historically, biologically, spiritually, socially, etc; what makes you more of YOU?  For me, I discovered that my identity was reflecting Truthful Loving Kindness.  To my surprise I can achieve that goal wonderfully as a Person With Dementia.  But also I requested that i have access to craft supplies and working space even if i am no longer able to use them in a fashion that OTHERS would expect.  Touching those materials brings an important part of what makes me feel alive.  Various types of dance have always been an important part of me being me, but with my balance issues in the past 10yrs, now looking into the option of wheelchair dance.  Spiritual contact time makes me feel alive.  Immersing my body in warm water makes me feel alive (whereas a shower feels like being attacked by water).  For me, short periods of time with meaningful intense communication is important.  For YOU, those priorities may be entirely different; you may crave adrenaline, travel, or being surrounded by large groups of family and friends.  That is okay because every person is different.  If those things have always been on your “bucket list” then maybe you should see which ones you can still deal with.

Chris Norris, in “Music Reawakening Report” ( http://www.arts4dementia.org.uk/music-reawakening-report ) says “I can still play the horn, and that is what drives me”.

Jeff Borghoff talks about Transcending and transforming IDENTITY in 5-min video at https://www.youtube.com/watch?v=RNx3yp-rIc8  .

Agnes Houston: “You can have a life after dementia, but it’s not handed to you on a platter. You’ve got to choose your path and it’s scary.” — 2016-01/07

Brian LeBlanc advocacy: “Thru my alzheimer’s journey, I have finally found what I was supposed to do, and it is the best job that I have ever had in my life … that I don’t get paid for” … ” get up & make a difference” — Brian LeBlanc 2015-09/17

Rick Phelps started Memory People Support group: “We Don’t have a cure, but we do have each other” — Rick Phelps 2015-10/04

Vicki Wells Bedard’s photo project: “I’m trying to string the good moments together, much like a rosary for my heart” — 2015-08/25

Harry Urban’s advocacy: “If I was magically cured … I no longer would have a purpose in life and I wonder if I would lose the gift to help others.” — 2015-10/02  …  “Being diagnosed with Alzheimer’s gave me a meaningful purpose in life and made me enjoy the things I am still able to do.” — 2015-09/07  …  “I no longer fear living with Alzheimer’s, my purpose in life is to help people find the answers to their questions and give them Hope living beyond their diagnosis. If I can do it, so can you.” — 2015-07/08

Terri Gadal: “Believe in yourself and all the possibilities within.  Allow the unfolding of a greater spirit to begin.  We already have all the elements we need as a gift from the divine.  We have the power and vision necessary to remove the obstacles and blocks in our lives. To create a new path in our destiny.  To follow the high road and to always be grateful for the blessings in our life.” — posted 2013-10/03

Further detail at  https://truthfulkindness.com/2015/09/11/my-philosophy-on-personhood-and-dementia-person-personality-perspective/https://truthfulkindness.com/about/  .
* 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 2017-04/21. Invested 14hrs during 3days. Tags are dementia, grief, acceptance purpose, strategy.

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Person-Centered Strategies

Tru here.
My most useful strategies are those that are very person-centered. Graphic below began with the person-centered graphic we used in Dementia Action Alliance’s white paper of “Living with Dementia: Changing the Status-Quo” found here >> http://daanow.org/wp-content/uploads/2016/04/Living_Fully_With_Dementia_White-Paper_040316.pdf
Really appreciate “Wings of Prayer” drawing by Sunny Chandra, of Singapore, and meditation drawing from McNair Scholar’s Rock.

General tool: Muscle-Memory.
Specific tool: computer graph paper.

Learned to type at ten years old, so muscle memory for that is very deeply embedded.  i was business student of the year during high school, and proficient on all business machines.  25 years ago i was my company’s expert in using computer spreadsheets (digital graph paper where you fill in rows and columns).  My brain needs only little effort on remembering how to use this software tool because muscle memory for those functions are still automatic.

So, for right now, my biggest complications are remembering what project i am working on, what step i am in the project, and WHERE i saved pertinent information.  With decline in use of Lotus software (spreadsheet program i knew best), transfer to Microsoft Excel program, and that software’s continual evolution, muscle memory does not help when software loses capacity to use Lotus functions.  But right NOW, a computer spreadsheet is still a useful tool … for this particular person, with this history, set of talents, and interests.  Most folks are surprised that written lists are becoming less and less helpful for me … but a computer spreadsheet is still helpful.  I think a lot of that is because it cannot be lost or left behind (along with ability to sort by different criteria).  Digital backup is always filed in computer according to dewey decimal system (which others can help me with if i forget).  My most crucial tools are also on cell phone.  One of the biggest problems is that many women’s clothes no longer have pockets large enough for a cell phone … especially if pocket already holds dog-training treats and handkerchief.  LOL !

I think compensation tools need to be extremely person-centered.

General tool: relationships.
Specific tool: spiritual life.

Theology has been a major interest since the summer before i turned six years old.  So my spiritual life is not only a strong sustaining factor for me, but actually part of my compensation TOOLS for dealing with discouragement and loss of activities/behaviors that i strongly associate with my personhood.  It surprises some folks, but while most aspects of my life are declining, my spiritual life is still continually growing.  See separate blog for my spiritual journey.  >> https://tlk4spiritual.wordpress.com/

Again; effective tools are extremely person-centered !

Collection of Links for other symptom tips:  https://truthfulkindness.com/category/symptoms/dementia-symptom-tips/

* 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 2017-04/13. Invested 3.5hrs in text & 3hrs in graphic.  Tags are dementia, person-centered, strategy, tools.

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Newest Writings

I have been very busy with my Service Dog trainee, Dementia Mentors, Dementia Action Alliance, and Dementia Chats.  But just because I have no recent blog entry postings does not mean there is nothing new to read from Truthful Loving Kindness.

NEWEST  PROJECT

SUFFERING and Pre-View of Book “Dancing With Elephants”

616-jarem-bk-dancingwelephants-3in100ppi

Have read early pre-view for first 3 chapters of Jarem’s thought-ful book “Dancing with Elephants:
Mindfulness Training For Those Living With Dementia, Chronic Illness or an Aging Brain”.

Tru here. I just pre-ordered book thru Amazon because Jarem has offered FANTASTIC bargain;
Great Mindfulness Package to anyone who buys the book and emails him (great.mindfulness.dancing@gmail.com) a picture of their receipt before March 12, 2017!”

  • A More Healing Way – audio/video series – Jarem interviews other authors on facing death, disease and chronic illness ((Tru here: interests me personally because includes videos from both Patch Adams MD & Jon Kabat-Zinn, among others))
  • Access to a live, 60-minute webinar on “Mindfully Facing Life and Death” with Q&A with Jarem
  • Audiobook read by Jarem ((Tru here: very helpful for my own comprehension to have both visual reading and audio hearing of same words simultaneously))
  • All the digital editions of the book (kindle, nook, ipad, pdf) ((Tru here: personally much appreciate Kindle tools))
  • 30-day Dancing with Elephants Journal and Workbook

Preface is that my dementia symptoms make reading comprehension difficult, and was pleased to discover manuscript is separated into bite-sized pieces that do not appear to need a whole lot of memory retaining past paragraphs in order to process current paragraph.  I use the Kindle “NoteBook” tool, so appreciate access in that format.  But most important is that it will be available in audio format as well, allowing 2 sensory inputs simultaneously with same words.

So far, it reminds me of my two other favorites; As in “I asked for wonder” by Rabbi Abraham Joshua Heschel, it is chock full of jewel-like quotes that are oh-so-applicable for my life.  As in “Deeper into the Soul; beyond dementia and Alzheimer’s toward Forgetfulness care” by Nader Robert Shabahangi PhD, the author asks reader to look at dementia (and in this case “suffering”) from a completely new perspective.

Jarem Sawatsky PhD looks at dementia, loss and suffering thru eyes of person with Mennonite beliefs,  strongly trained in Peace-building, and healing Justice.   Since his diagnosis with a terminal disease, he has been blogging at Dancing with Elephants, exploring how peacebuilding and mindfulness insights might help those facing chronic illness, dementia and aging. His influences include writers such as Thich Nhat Hanh, Paul Kalanithi, Anne Lamot, Atul Gawande, John Paul Lederach, Jean Vanier and Lisa Genova and singers like Leonard Cohen, Passenger, Norah Jones, and Adele.

INTRO excerpts which are my favorites:

  • “When you find out that you are dying from an incurable disease, a kind of clarity can emerge. It is the clarity to distinguish between what matters and what does not matter. … This book chronicles what I see as important. It is my cheat sheet for facing disease and aging in a healing kind of way.”   ((Tru here.  I have also spoken of that separation of priorities.))
  • “… laughing, and stumbling my way into healing.  Not the kind of healing that takes away the disease but the kind of healing that awakens the heart to love.”
  • “Suffering is real and must be faced head-on.  But suffering alone is not enough.  On the other side of suffering can be joy — and also more suffering.  We must learn to dance with both.”
  • “Our culture offers abundant advice on how to achieve financial and career success, but there are very few books on how to embrace the downward path of losing your mind.  We have success tips for leaders, but almost no “success tips” for the billions of us facing disease, dementia, and aging.  This book explores the art of dancing with elephants.  I invite you to join me in this dance.”

Embracing the Hard Things (chapter excerpts):

  • … it requires substantial mental (and sometimes theological) gymnastics for people to be able to justify a view of the world in which uncomfortable or unpleasant things shouldn’t happen. …
  • The temptation to try and insulate oneself from the hard things remains both common and understandable, but I still don’t want to run from the storm.  I don’t want to run from the hard things.  Healing is not the absence of the storm.  Healing is the way we ride. …
  • We cannot learn to revere life if we cannot wrap our hearts around the idea that suffering exists.  The art of dancing with elephants is not the elimination of suffering.  We don’t kill the elephant.  We learn to dance with it.  All living beings suffer.  To revere life, we cannot remain in denial but must understand that suffering and death are inevitable.  This truth is not the end of the story but it is a necessary starting point on this journey. …

…   ***   …

Looking forward to finding many more “jewels” in remaining chapters.

Pre-ordered at https://www.amazon.com/gp/product/0995324204/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=ATVPDKIKX0DER

Jarem’s most-recent blog entry http://www.jaremsawatsky.com/more-healing-way/

* 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 2017-02/22. Tags are dementia, suffer, chronic, book, Jarem Sawatsky.

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Why DAA Dementia Action Alliance as priority?

2017-projects-3in100ppi

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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