June Pages by others with Dementia Symptoms Part 2

Posted on June 29, 2015 by Truthful Kindness

These are newest pages that I have posted from persons with dementia symptoms
who have shared their lived experience thru words or projects.
(I add the word “symptoms” because not everyone uses the same vocabulary;
my collections include pages from those with diagnosis of
Mild Cognitive Impairment as well as Alzheimers, Lewy Body, Vascular and other types of “dementia”)

I thank each of you for your generosity of letting the public into your private world !
My hope is that your perspectives can be applied to help and encourage
other patients, care-partners, and professionals.

Suggest Right-click the TEXT in between the arrows, and “open-in-new-tab”,
which allows you to return to your original page, by clicking tab at top of window.

… New page from retired doctor David Kramer with part of his diagnosis story at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/june-2015/ <<
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… New page from Karen Francis titled “Today is Sunday Funday”

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/karen-francis/june-2015/ <<
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… New page with reactions to book and movie “Still Alice” from Paulan Gordon at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/paulan-gordon/june-2015/ <<
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… New page from Cecil Ristow with “Where Does It Go” along with a couple projects at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/june-2015/ <<

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… New page from Jean Lyon; “Give it a Try” including photos of projects at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/jean-lyon/june-2015/ <<
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… New page with photo project “Beginning a New Day of Wonder” from DonnaLynn Morin at:

>> https://truthfulkindness.com/index-persons-with-dementia-pwd/donnalynn-morin/june-2015/ <<

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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. Full legal name Truthful Loving Kindness copyright on 2015-06/29.

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Impact of Example

Posted on June 23, 2015 by Truthful Kindness

Photo below: My Great-Grandmother meets first great-great-grandchild (6 months before death with dementia)

Tru here. How much of the way I have handled my multiple diagnoses and dys-Abilities have been influenced by living in extended family, and watching how my family members handled their physical and cognitive challenges?

GREAT-GRANDMOTHER Leota:

I think I was six years old when my 71-year-old great grandmother became unable to live independently, and began living with us for months at a time.

We didn’t know she had the early stages of dementia. We didn’t know why she acted the way she did. It created havoc in our house, however we kept trying.

Great-grandma showed us love and we showed her love … and we all kept trying year after year of her long visits.

It would have been so much better
if there was such a thing as a diagnosis of early-stage dementia at that time,
… if we could have learned what the symptoms were
and what reasonable expectations were,
in order to avoid unreasonable expectations.

Instead there were many many misunderstandings
and false accusations.

By seven years later we knew more what to expect, altho we still did not understand why.

I was about twelve years old when Great-grandma asked if I wanted to travel with her to Canada. She recognized her own cognitive problems, so she knew she would have difficulty traveling on her own. I was young enough that I don’t remember much of the trip, but I remember my surprise when she got lost in the bathroom at the airport.

Great-grandma out-lived two husbands and her three children. She died at 87 years old, when I was 21 years old.

But she taught me persistence;
If one way doesn’t work then you try another way …
and you KEEP on trying new ways
until you find one
that enables you to complete what is necessary.

Pick your priorities.
If it is important … then you never give up.

Remembering family dynamics of extended family setting demonstrates how very important it is for those around me to recognize and accept the diagnosis … instead of trying to fit me into the “normal” box … where I continually fail to meet expectations.

She taught me that just because you forget a name doesn’t mean you panic.
Relax; You have not forgotten the essence of the person,
and how important that person is to you.

She taught me how to keep on keeping on
despite dementia symptoms.

.*.

.Photo above: Mom had gone from part-time to full-time live-in care-partner, helping Grammy cope with dementia symptoms (altho Grammy had not yet received diagnosis). I had recently received Social Security Disability for both physical and cognitive dys-Ability, and was visiting several weeks. i introduced my first service dog, Hero (the first “Hero, Service Dog”). He pulled my wheelchair, but you can see i am steadying myself by holding my arm over his back.

… and then my GRANDMA Erma:

Grammy’s very first symptoms began close to the same year my great-grandmother died, but they were assigned to depression. Symptoms came and went thru the years, but it took many years before they were finally diagnosed as dementia.

Grammy’s challenges with dementia emphasized that the person’s essence remains.

She did not recognize her reflection in the mirror, but
her character of unselfishness,
… of time and energy investment in the lives of others,
was consistently reflected.

Her coping strategies changed
and her emotions sometimes became hard to manage,
but her essence remained.

Spending time with Grammy taught the importance of routine.
She taught me the impact of consistent FREQUENT physical contact with those we love.

And Grammy taught me that there is a LANGUAGE of touch.

.*.

Photo above was during Dad’s sick time to recover from cancer surgery.
We bought a travel trailer and took our first “vacation”.
I was definitely a “daddy’s girl”, and 13yo.

my FATHER RaMon:

I was thirteen years old when Dad got cancer and was given two percent chance of life.
He died of cancer fifteen years later, when I was 28 years old.

I gained tremendous perspective by watching the way he lived those 15 years.
His battle taught the importance of transparent communication with Creator, self, and those we love.
I learned physical impact of a positive attitude and faith,

… and i learned PERSPECTIVE;
the priority of keeping personal circumstances within a larger perspective of family and community.

It is not all about me, but despite my challenges and limitations I CAN make a difference in the world around me.

As persons with dementia dys-Abilities, I think it is important to put our symptoms and challenges into a larger perspective. How many children, grandchildren, or others watching us now, will be dealing with these same symptoms in future years?

What will my own children and grandchildren learn from the way I handle my symptoms and challenges?
What can I do now
to ensure they are positive productive lessons
… instead of bitterness and fear?

* 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. Full legal name Truthful Loving Kindness copyright on 2015-06/23.

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June Pages by others with Dementia Symptoms Part 1

Posted on June 15, 2015 by Truthful Kindness

So far this month I have posted pages from the following persons with dementia SYMPTOMS who have shared their lived experience thru words or projects.
Thank you so very much for your generosity of letting the public into your private world !
My hope is that your perspectives can be applied to help and encourage other patients, care-partners, and professionals.

Suggest Right-click and “open-in-new-tab”, which allows you to return to your original page, by clicking tab at top of window.

… New page from Charles Jaggers with his diagnosis story at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/cj-jaggers/june-2015/

… New photo project from Gord Settle with “Back Home from Trip South” at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/gord-settle/june-2015/

… New page with my favorites from Harry Urban’s blog at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/june-2015/

… New art projects from Zel Caddey at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/zel-caddey/june-2015/

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Self-Identity; Am I Still Me

Posted on June 7, 2015 by Truthful Kindness

Tru here. One of the things I appreciated most about the movie “Still Alice” was simply the title. Recently I was asked about this feeling of inner conflict; “Am I Still Me?”

I consider this a communication issue; communication with self or self-identity. While I am definitely not a professional, I have experience with my disabilities. The more my disabilities advanced, the more often I felt like I was the “stand-in” actress trying to “stand-in” for the person I was before disability.

So often, perception of who a person is (and often our perception of self) is dependent on actions; what they (or we) SAY and DO, both negative and positive. But, with our constantly changing cognitive dis-Abilities, those activities are constantly changing … and we do not feel like the same person. Hopefully we will discover other activities to enjoy and feel are of value to the world around us, helping to partially fill the empty hole from activities we can no longer take part in. Another aspect is the frustration, anger, and fear caused from experiencing these symptoms, and from the need to prepare our surroundings and our family (structurally, financially and emotionally) for the expected future.

It seems to me that the more severe the dis-Abilities become, the greater this inner conflict of self-identity. That is why it bothers me so very much when folks say “but she is mostly gone now” or some of the other phrases. ((grr-r-r-r)) The abilities change, the interests change, and the emotions change, but this also happens as each child becomes an adult. Then, when our impulse/decision filter is dissolving it can create drastic differences in behavior from inability to think things thru before we say or do them. In earlier years, the process of “is this really what I want to say or do right now” and “is this appropriate given the larger perspective” was automatic – I didn’t even think about it. But when losing impulse filter that ability is disappearing. All this creates huge holes of inconsistency in our sense of self.

Ballroom dance was a big part of my life and our family taught dance while I was growing up, so that was a big huge hole during the 10 years when I was living from a wheelchair. Reading was a big part of my life and my sixth grade teacher visited our home to discuss his concerns that I only lived my life thru books — but now my reading comprehension is down to fourth grade and I cannot even understand what I myself write. This is a very big hole for me as a “bookworm”. I was a trustworthy keeper of secrets — until lately. Now if you don’t want me to spill the beans then don’t put them in the pot, because I may not have the filter in order to keep the secrets from overflowing. Now, what goes in my mind all too often comes out my mouth just about immediately.

We all change — but we do not become a different person. The facets of our character are reflected differently with the changing phases, abilities, frustrations, angers and fears, but we are at our basic essence the SAME person — with different aspects emphasized. In my own life that was a very important hurdle, and actually I think recalling some of the exercises during theatre training helped me to finally leap over that hurdle and advance with self-understanding. Analyzing my theatre characters taught me that the roots of the character remain — if you look hard enough.

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If there is an advertisement below, I have no control over what is shown. — Full legal name Truthful Loving Kindness copyright on 2015-06/07.

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May Pages by others with Dementia Symptoms

Posted on May 29, 2015 by Truthful Kindness

Tru here. Since there has recently been hot debate about who has the right to call themselves “PWD” (Persons With Dementia); in what level of diagnosis is necessary to wear this label, and how often patient must be re-examined in order to retain the label — and ALSO Medical vocabulary changes — that I am beginning to eliminate the “PWD” label from by own vocabulary.

I will NOT go to each one of my friends who have dementia symptoms with the need to discuss diagnosis issues, especially with the recent changes in terminology and definitions. Instead I will attempt to change my own phrasing, titles, and pictures, in both blog and newsletter, with efforts to minimize misunderstandings. But this will take time, so please show patience, but also do not be surprised at the changes.

Splintered doctor opinions have no place in the sharing from lived experience of SYMPTOMS.
So that is how I shall try to remember to phrase it; Persons With Dementia SYMPTOMS.

…

So far this month I have posted pages from the following persons with dementia SYMPTOMS who have shared their lived experience. Thank you so very much for your generosity of letting the public into your private world ! My hope is that your words can be applied to help and encourage other patients, care-partners, and professionals.

… New page from Cecil Ristow with his PCA Presentation at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/

… New page from David Kramer with first installment of “FAQ” regarding his diagnosis at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/

… New page with my favorites from Harry Urban’s blog at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/

… New page from Janet Pitts regarding her presentation in Geneva at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/janet-pitts/

… Two new pages from Kevin Smiley at:

https://truthfulkindness.com/index-persons-with-dementia-pwd/kevin-smiley/

… New page from Max McCormick with her fairy garden project at

https://truthfulkindness.com/index-persons-with-dementia-pwd/max-mccormick/

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Symptom Problems with Overnight Stays or Motel

Posted on May 25, 2015 by Truthful Kindness

Tru here. Recently returned from three weeks of overnight stays at various places, and I was asked for suggestions.

Flooring: Highest priority was carpeting. Most places we stayed did not create feeling of disorientation from pattern of the carpet, but one place did. Every time I stepped out of the door to our room I was hit with feeling of the floor moving (no snakes, just movement from pattern). It was my first experience with this symptom which is not uncommon amongst people with symptoms of Lewy Body Dementia. We stayed several days and after a few minutes I learned to avoid glancing at the floor. Each time I first stepped out onto the carpet I forgot, and staggered a bit. My background in assisting with ballroom dance class stood me in good stead; “Look at your partner and not your feet”. So I glided along with my canes, and walked like I was dancing. I think maybe it was a criss-cross pattern on carpeting, but not sure.

Plumbing: Probably the item that was next in priority was water faucets. Husband was out and I ran tub until full, waiting for it to get hot — but water was still cold. Emptied and re-filled tub, this time with sink turned on, hoping hot water would finally get thru all the pipes, but that didn’t work. Gave up. I went several days with no ability to take bath or shower because could not remember which way to turn the handle in order to get hot instead of cold water. It was explained to me, but of course I had forgotten by the next time I tried. I get it that red is hot, but do you turn handle so red is up, or turn same direction as red dot, or what? It has only been a problem once before, but it was a huge problem in more than one place on this trip. At this stage I need sinks and tubs that have two handles; and both handles need to be well-marked. Additionally, suggest water temperature meets local disability requirements.

Color: My symptoms are not severe yet, but I know that when they do become severe it would also be important to have color differentiation; floor different color than plumbing fixtures, and garbage bin different color than floor, doors different color than walls, etc.

Grab-Rails: I don’t ever remember having problem with this, but husband insists that if towel racks are near tub they really should be ADA-approved hand rails securely fastened into studs and strong enough to support a person in case they are used for support bars. A couple of the motels we stayed at had towel racks pulled partially off the walls.

Electricity: Rarely does a motel supply either nightlights or electrical outlets that are in appropriate places for nightlights, so I try to always remember to bring nightlights along with an extension cord. I bring an additional extension cord to use with my breathing machine for sleep apnea (which is another common problem among folks with Lewy Body Dementia symptoms). This needs an additional extension cord because most motels do not supply an electrical outlet within easy reach of night stand. In fact the last motel had no night stand at all on my side of bed. (And actually both my partner and I use machines, so we both need night stands and outlets.) However, one motel not only had an extension in easy reach but even had it mounted to side of night stand, so that I did not need to crawl on floor to access it. I suspect it was usually used to charge cell phones, which is brilliant placement since my cell phone doubles as night clock while charging.

Floor Plan: There was no emergency while we were away, but if there had been I would have had a problem getting out from some of the motels. Sometimes there were three doors close together; the entrance, the bathroom, and the door to what I assume was a suite. A few times these became confusing, with me not really knowing which door was the entrance/exit. A few places have the motel phone numbers and basic information posted on the back of entrance door, and that really helps. There needs to be something clearly delineating the entrance/exit door.

I think these concepts might make life easier and safer for many people with dementia symptoms. If I think of more, I will add it here. If you think of more suggestions for overnight stays, please add as comment.

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Re-Blog of Diagnosis Issues

Posted on May 18, 2015 by Truthful Kindness

Tru here. 2016 Update here >>

https://truthfulkindness.com/2016/11/30/symptom-progression-strategies-2016-dec/

Update 2015-09/18: My friend Brenda Avadian helped edit article I wrote regarding Mild Cognitive Impairment diagnosis issues. Article can be found at http://thecaregiversvoice.com/voices-with-dementia/what-the-change-in-diagnosis-from-dementia-to-mci-means/

Update 2015-06/07: Neurologist said we need to keep a close eye on me because with these symptoms I am at high risk for Lewy Body Dementia. This week received clinical diagnosis of Mild Cognitive Impairment. Not a huge surprise since according to “Archives of Neurology” 92% of the patients previously categorized as mild dementia would now be classified as “MCI” with the new definitions. http://healthland.time.com/2012/02/08/why-a-new-definition-of-cognitive-impairment-may-confuse-patients/ . Several of my friends have been to the neurologist in the past month, and each has been re-classified with MCI (including one “with underlying LBD” and one “with underlying Alzheimers”). Since my diagnosis issues were highlighted within this month on this blog entry, I am adding this addendum here instead of creating a new blog on the issue.

Update 2015-05/18: Due to some recent events, my lack of confirmation for dementia diagnosis has become a current issue.
Thought I would re-post my previous blog on the subject, just to make sure there are no current misunderstandings (and for my many new friends). Current status is STILL pending. Have had two specialist appointments in past 4 months, and 2 more appointments are currently scheduled. Yes this is uncomfortable. Part of the discomfort is worry that if I do not yet fit any of their nice neat boxes with CURRENTLY known information on dementia … worry that they might try to push me into some other diagnosis simply to feel good about having a label to put on my symptoms.

Further

If you want to check out some of the other blog items, I suggest the “Crucial” category at the bottom of the blog window.

Diagnosis and Expectations; Originally posted Oct 10, 2014.

Tru here. Enough added people are following this blog that I thought I would clarify my diagnosis and share my thoughts for the next few months. LONG post!

:
Cognitive symptoms began Feb 1999, and by later that year I was let go at work due to (formally) “inability to meet doctor’s return to work criteria” (and informally; slow task completion). My employer recommended applying for permanent disability and it was given almost immediately, on the condition that I have no control over the funds received. (Hard to take within a few months of being Secretary to the Financial Controller of large facility.) Driver’s License removed 2000, but I contested and after 60 minutes on-the-road driving test was able to get my license back in 2001. 2007 discovered Lyme disease, Babesia, and Celiac, so began intensive treatment which lasted until May 2012 (five years). Muscular symptoms dramatically improved during this time; I was able to leave wheelchair and begin regular program of walking. However, cognitive symptoms continued to intensify. By 2012 my reading comprehension had dropped from University-level to barely sixth grade. I was having trouble with repeating questions, and not remembering basics like whether I had fed animals or myself.

Doctor’s diagnosis 2012-Jul 23 at 10am: I mentioned my suspicion of permanent progressive dementia. The doctor agreed. He had already done appropriate blood tests and MRI, and today he said that whatever kind of dementia this is, it is still at an early stage because my brain is still within normal size range. He has been my doc for 12 years.

Discussed diagnosis with family and “came out of closet”. But wanted confirmation from neurologist so the following summer (2013) went to Stanford Dementia Center. NeuroPsych scores still showed IQ 119, and they did not understand why I was having these symptoms (audio memory in most severe category of brain-damage scale, difficulty with reading comprehension, not recognizing husband’s face, etc.) so suggested I see a psychiatrist. After 6 appointments in order to be absolutely certain, psychiatrist gave me a clean bill of mental health. However, since Stanford did not respond to my doctor’s letters of concern, and seemed unwilling to share raw NeuroPsych scores to enable later comparisons, I am not returning to Stanford.

Several symptoms dramatically improved with Aricept in Jan 2014, but after six months mostly declined to pre-Aricept performance levels. I asked for one of the top specialists for Lewy Body Dementia Association to give a second opinion, but after two months’ wait he turned me down. I heard some facilities do not see dementia patients with history of Lyme.

Just a couple months ago it was pointed out that I am behind in mammograms. My doctor gave me the choice of whether I wanted to discontinue these maintenance activities and I said yes. I deeply appreciate being given this option.

During this year of 2014 I have become increasingly invested in “PWD Perspective”, making public the perspective of Persons With Dementia (PWD). I have become over-extended in both time and abilities. Most other aspects of life are being postponed for this goal. Last night my reading comprehension was probably about 4th grade, and that is scary when so much of my analysis of life is thru writing. I have not been able to understand my own writing (while I am writing it) for a few months now, so review for editing is impractical.

I must repeat: I have really conflicting feelings about going thru the diagnostic process again.

Recently told 20-30% Britain autopsy shows improper dementia diagnosis. Considering the huge value placed on diagnosis, that is a dramatic (forget the appropriate word but similar to …) difference, and I doubt if USA is much better. Some brain autopsy shows evidence of clinical “dementia” despite no evidence of dementia symptoms before death. And the opposite is also true with autopsy showing no clinical dementia for patient diagnosed with “dementia” and showing dramatic symptoms. My theory is that, like many other fields of study, medical science has become very dogmatic about PIECES of fact, all too often seeing those pieces as the whole, which is mostly unknown. As my husband told me, “No matter what the illness is, splintered opinions from specialists only make it more difficult to get a timely diagnosis. Please do not let your confusion get caught up by theirs.”

Truly, like the diagnostic status of most of my PWD friends, “fact” of dementia diagnosis is fragile and temporary. Subject to change if their particular doctor becomes unavailable. Probably 50% of my PWD friends have at least one doctor who says they do not have dementia, and at least one doctor who says they do. But I believe all of them have experienced the blood tests and brain scans to rule out other causes. All that I have talked to have had NeuroPsych testing. Most have not gone thru elimination for possible Psychiatric causes like I have, but when they need to see a new doctor each is vulnerable to the new assertion, “but you are too young for dementia” and start to revisit the diagnosis issue all over again.

I am currently fed up with the transitory nature of clinical dementia diagnosis. Doctors don’t seem to recognize how re-evaluation of diagnosis throws patient world into greater chaos. That is additional chaos thrown onto the already-scrambled symptoms of dementia, and can push some patients to the breaking point. Both loved ones and doctors need to carefully consider factor that PWD has already been on this roller coaster for years. It is exhausting.

Have you ever thought you saw a loved one after they were dead? Your heart skipped a beat then rose on wings … only to crash in the dust. Or vivid dream where their death was just a nightmare and you are so relieved that the nightmare is over, and enjoying them in your life again. You wake and renew the grief process.

Each re-evaluation of dementia diagnosis does that to patient, because dementia diagnosis is notification of terminal illness with a certain “normal” route. To maximize preparation for living well in those circumstances, you are spending both time and money on things that you would otherwise spend on completely different priorities for a “normal” life. MAYBE I can get my life back, then I could do this. I could do that. The longer you are in limbo the more hopes are raised, despite conscious efforts to keep expectations within realm of reality. Maybe I should not give this project away because if these dementia symptoms are temporary then I could finish writing it. I could finish embroidering it. I could finish sewing it. I could go back to work and make money in order to maybe fulfill this other wish. Oh … if so then … And we are back on the roller-coaster again!

On the one side there is the wonderful opportunity to exploit this window of time when we can communicate with world and bring awareness that patient has life after “diagnosis” then window is slammed shut and we were inaccurate in premise of all communications. … until later re-diagnosis is re-installed on the down-swing of roller coaster, after patient is unable to communicate and doctors discover they were correct in first diagnosis!

In my case I cannot continue these extroverted tasks of world-wide communication while going thru the added chaos. Due to my increasing time investments with new project of making public the PWD Perspective, time investment doubles every few weeks.

I have been in “over-drive” for months and the last few days have been overwhelming. I am drowning. Even with my extra tools, last night’s reading comprehension was about 4th grade level and I am unable to participate in life. My brain is extra scrambled but at same time trying to make arrangements for yet another series of appointments with new set of doctors, (and I have been thru so very many with my Lyme stuff and now this).

I very much enjoy turtles; the lovely placid creatures who carry secure covering and so easily pull themselves under cover for time of restoration and rejuvenation. As an introvert my private time is crucial to my well-being and I think it is time for me to pull into my shell and you will not see me for a while. If you want to check on me I will probably post my current “diagnosis” on the cover of my “shell” (blog at truthfulkindness.com). After my next blog with pictures of projects from my friends, you won’t see me for a while. My time will be spent on details of daily life with Creator, self, and loved ones. Need to establish my new craft room, make curtains for all these windows, and other craft projects which have been put on hold for past 15 years. My husband hopes there is enough room in my little turtle shell for all my plans.

If someone has spare time and would like to enable publication of PWD Perspective during these months, please contact me at truthfulkindness.com. Other than that, I will post as often as I am able to, while in hibernation.

Original posting on Dx is at https://truthfulkindness.com/2014/10/10/my-diagnosis-expectations/

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My Blessing is almost 13

Posted on May 5, 2015 by Truthful Kindness

Tru here. Hope to get computer from shop sometime this week. Until then limping along without my FaceBook friends. So here is this week’s entry (without photo for now) kind-of unrelated to dementia symptoms, but when I sat down with pen this is what came out because this is what I am thinking about.

Newfoundland dog life expectancy is only 9 to eleven yrs old, & Blessing turns 13 this week. She has always personified energy & enthusiasm, but today she is tired & resting.

Currently, Blessing considers her main job as a babysitter for the chickens. When they were baby chicks she would lay for an hour at a time, head on paws, just making sure no cats or large birds endangered them. Now chickens come running when Blessing enters the yard.

Yesterday I went out to find the cause of her repeated chirps of appeal. Blessing was laying in the middle of the yard, calling chickens away from the far fenceline.

But Blessing’s greatest enjoyment was her status as Service Dog. She thought pulling a wheelchair was the height of glory.

Today she dreams & her legs move rhythmically during sleep. Who knows? Maybe her memory carries her back to proud carriage & perky step, again doing the job she loves most; pulling a wheelchair..
Sent via BlackBerry by AT&T

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Letter of Thanks

Posted on April 27, 2015 by Truthful Kindness

Tru here on Sunday, April 19. On Friday, I finished my first public speech in many years, on subject very important to me; Value of PWD Lived Experience as Contributor towards Dementia Friendly Community. Husband took these pictures as part of the video which we hope to post soon. Saturday there was a meeting, and …

Realized this morning that I have just passed one of those tipping points. Until this ADI Conference of 2015, I have thought of my “team” in advocacy efforts as only my friends in Dementia Alliance International and my Dementia Mentors “family” (of course, plus our good friend Dr Shibley Rahman). Looking back, some conflicts of ideology with care-partners had created a bit of an “us-vs-them” mentality.

The closer contact with individuals during these conference days has changed that. Except for yesterday’s ADI-DAI meeting, the most influential effects have been “chatting” and meals during after-hours contacts. But actually the largest effect was from the “teamwork” atmosphere during the meeting between the DAI members present, ADI Staff members Marc Wortmann and Jane Cziborra, and ADI Chairman-Elect Glenn Rees.

As usual, I have little memory of words spoken, but much memory of the feelings engendered from the meeting. The main thing was the feeling of an older brother (which I have never really experienced as an eldest child). The feeling of independence, alongside inter-dependence was actually quite profound. As a speaker, but especially as a DAI member, thank you for the opportunity to participate in that meeting. It created a paradigm shift for me. Also my thanks to Workshop chair, Mike Splain, for his assistance in my speech preparation.

Thank you,
Truthful Loving Kindness
Sent via BlackBerry by AT&T

Still visiting this beautiful Land Down Under & will further report on my adventures from security of my PC when I return home. Love to all.

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Value for Lived Experience of PWD as Contributor to Dementia Friendly Community

Posted on April 6, 2015 by Truthful Kindness

Tru here. Been VERY busy preparing to speak at ADI 2015 Conference in Perth Australia this month. “PWD Dementia Success Stories” booklet should arrive from printer any day, and we leave in less than a week. My suit for speaking is almost finished – just a little bit of final stitching to do. Realize most will not be able to attend this conference, so thought you might be interested in my oral presentation; current draft (along with slide presentation) is below. ((PS: Will be flying from late Sunday until Tuesday night, so will not post again until we return home the first week of May.)) :


Update:	Full video now available at link below.
	https://www.youtube.com/watch?v=_N0kqZVgWiI

UPDATE: Below is actual transcript from speech given.

Okay; 15min on:

“Value of PWD Lived Experience as contributor to Dementia Friendly Community”;

Hello. I’m Truthful Loving Kindness.

If I am a Person With Dementia, (PWD) and my brain is dying … what can I personally contribute toward Dementia Friendly Communities?

I can share my Lived Experience;

… what particular swiss cheese of dementia symptoms I have;

… what areas of life have holes instead of cheese and skills,

… and how to make the most of the skills that are left.

… in hopes that you, as Coach, Professional, or Loved One,

can apply that lived information in your relationships,

because … “Community” is made up of relationships.

So … diagnosis: My cognitive problems first became noticeable in the year 2000,

but it took 12 years before I got even a tentative diagnosis for dementia.

… How can you personally apply that information in YOUR relationships?

… Often dementia is a gradual slope,

so do not assume that diagnosis means the next step is adult diapers and a care facility.

If you are a person without dementia then help the Person With Dementia (PWD); help the PWD make appropriate legal preparations, so that job is not hanging over our head,

… but acknowledge the fact that we have a lot of living before we get to end stage.

(( Slide change = Success Stories; “I did know how to do this – there!”))

In order to emphasize that fact, my friends and I put together a booklet called “PWD Success Stories”. There are free ones over there on the table, and I see some over there too. They are free but this project is funded by my own wallet, so after you get done reading one can you pass it on to another Person With Dementia, or a Coach, or Professional.
If you are a Person With Dementia (PWD) then I’ve got great news for you! There are peer groups ready to share their Lived Experiences in order to enhance this time in your life.

(( Slide change = Harry’s Lantern))

So, after diagnosis: 2yrs later I discovered the wonderful online peer groups and blogs. Let me introduce the blog from a friend of mine named Harry Urban, diagnosed more than 10yrs ago and he was leading the way on this trail when I arrived. He wrote:

I want to go home, where I belong. … I don’t belong here and can’t understand why I am here. These are the thoughts that go through your mind when you suffer from some form of dementia.

… Your life is being forgotten.

You look around and don’t recognize anybody or where you are. It doesn’t seem right and you just want to go home. The problem is, … I don’t remember where home is.

I may be at the point of no return. … “I want to go home”, but no one can reach into my mind to help me. I am alone and wandering down this road. …

Harry’s blog reminds me of my Daddy leading the way: When Daddy and I were walking in the night he held the lantern out to his side. That enabled Him to see a bit of the road ahead, and me to see a bit of the trail in between. This Dementia Trail is full of bumps … and tangles of thistles!! And thru our writings we can sign-post the dangers as we go, for those following behind. Coach and on-looker can observe and assist, but we on the dementia trail itself have a unique perspective. Someday there will be a cure, and we hope the trail will not last long enough to become a well-worn path. In the meantime we continue to shine the light on our trails by writing, or making video, … or speaking with groups.

A few days later Harry bounced back with this:

Have you ever had the feeling that you helped someone you never met? … I shed tears when I am able to help someone that has no one else to turn to. I call it my work but it is a GIFT given to me by this horrible disease I have called Alzheimer’s. Alzheimer’s has taken me to the darkest of places and I had to learn how to crawl out or be stuck there for the rest of my life. It is not just a social commitment or a part time endeavor; this is what I am supposed to do with my life. … Unless you walk the path, you have no idea.

Harry is a motivator for writing in my blog, & was one of the founders for “Dementia Mentors”.

(( Slide change = DM Poster ))

I made this poster for Dementia Mentors, in memory of my two grandmothers who walked the Dementia Path before I did.

“Since I learned from those who went before me & led the way, I do not dread what is to come.

This is not a NEW path, even tho it is unfamiliar to me.

Like those before me, I will travel this path with honor and integrity, lighting the path for those who follow

… until a cure is found.”

The peer group of Dementia Mentors is a primary support for me. It is not only something I “want” … it is something I need. After beginning the video chats on Wednesdays and Fridays, I turned to my husband and said, “You know what? Right now I FEEL normal; really I know that I am not – but I FEEL like I am. I have so much in common with my friends that during our chats … I AM normal!” Dementia Mentors are one of the resources listed in the PWD Success Stories booklet.

(( Slide change = Swiss Cheese Symptoms ))

Back to my SWISS-CHEESE symptoms: My most intact skills are in Research, Relationships, and wRiting. In contrast, the biggest holes (where symptoms have removed my abilities) are in Reading, ‘Rithmetic, and Remembering.

… My reading comprehension has now dropped from University-level to 4^th grade.
… My last job was in Accounting, but now I couldn’t tell you whether 44 was larger than 37.
… And my husband says I often repeat the same question.
I also have a hard time recognizing the way he looks, but I recognize his voice immediately.
I have smell hallucinations, usually of something burning, (which I discovered is a very common smell with my PWD friends) and once in a while I have visual hallucinations –usually bugs. (How fun, huh?)
However;
notice that the remaining skills allow me to maximize sharing of my Lived Experiences.

(( Slide change = DAI ))

What else? Another aspect of life after diagnosis is working on Dementia advocacy. We take the portions of our cognitive functions that remain and APPLY them to Awareness and Advocacy projects. Dementia Alliance International (abbreviated DAI) is the formal non-profit organization that I look to for that area of my life and contact information is, again, in the booklet. It is also written here (pointing to overhead).

I have been forgetting to cross things off as I went, so I have no idea where I am. Ummm — there it is!

… completely by – and for — Persons With Dementia. We offer video & text support groups, but also it seems like it is geared to help train us as spokespersons to the world. I am currently in their groupings for Speaker’s Bureau and for Video, but there are several other outreach groups – again by and for the Person With Dementia. Recently World Health Organization collaborated with DAI on what they called “The Wish Project”, and Alzheimer’s Disease International also agreed to start collaborating with DAI as an independent international group of people living with dementia.

This is an exciting development, and, as the DAI news-flash states, “DAI has worked for almost twelve months towards this, and are very hopeful it is the beginning of significant change towards ensuring the voices of people with dementia are heard. Most importantly, that we are always included in the conversations about us, on the things that impact our lives and futures.”

… Okay … that is a lot to go on – for a Person With Dementia, but what if you are a person without dementia? What does this have to do with you? … or with “Dementia Friendly Community”?
For one thing, request a speaker from the DAI Speaker’s Bureau.
Regularly access the DAI Master Classes,
Webinars, and
Blogs in order to see life from the perspective of Persons With Dementia.

(( Slide change = PWD Perspective ))

And that is why I started the monthly online newsletter of “PWD Perspectives”; to allow others to see life ‘Thru the Looking Glass’; from life perceptions of my fellow Persons With Dementia (or “PWD”). No revisions, explanations, or printing format is available with the newsletter; it is simply a collection of gathered links from what we write, or video, or artwork of Persons With Dementia; just like a search engine only it is in one place.

(( Slide change = Art – For purpose of saving blog memory requirements, posted repeat of this picture despite also contains my art in center – actual slide used in speech does not have mine added ))

Artwork above is based on my friends’ symptoms of sensory overload from Fronto-Temporal Dementia, and hallucinations that can occur even in early stages of Lewy Body Dementia … meanwhile here are a couple more excerpts from other persons:

I myself wrote a piece on Conversation Tips from patient perspective, which many have found helpful and I brought a few copies — over there (pointing to table).

Robert Bowles wrote: “ASAP squared” means …

A … As Soon As Possible; S … maintain equal … (Oh! I’m sorry — I skipped.)

A … find Acceptance of the diagnosis, (That makes a lot more sense!)
S … maintain equal or greater Social interaction …
A … develop an Attitude that is positive and focuses on my two mantras, and
P … find your Purpose in life since your diagnosis.

Robert’s two mantras are
(1) Live life like never before, Live life to the fullest, and
(2) I do not have time to die, I have too much to live for.

Tommy Dunne posted it very concisely: Dementia has taught me that I’m here to do a job. It’s shown me that I still have a purpose & a duty to fulfill … before time runs out.

You can see significant things are being produced. I think verbal and artistic produce from Lived Experiences of Persons With Dementia ARE able to contribute toward Dementia Friendly Communities. Despite our “Dementia” label – or maybe BECAUSE of that context, it is very important to value the product from our remaining cognitive abilities. One of the best ways is to listen to our words – truly LISTEN, not just wait and endure while we are speaking – not just quickly scan what we write. Instead reflect on our thoughts and art, so that you can APPLY that to your relationships.

Time is up … Thank you very much for LISTENING !

………………………………………………………………………………………………………..

speech took 14.5 minutes

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Person with Dementia Symptoms

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