My Diagnosis and Expectations

Posted on October 10, 2014 by Truthful Kindness

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! 2015 Update here >> https://truthfulkindness.com/2015/05/18/re-blog-diagnosis/ and 2016 Update here >>

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

Summary: My GP and I agree on diagnosis of “dementia” but waiting for confirmation from neurologist. 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 have really conflicting feelings about going thru the diagnostic process again. 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.”

More detailed explanation:
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.

* 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 2014-10/10.
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Crafts I Personally Use for Dementia Symptoms

Posted on October 9, 2014 by Truthful Kindness

Tru here. ((Updated 2018 Mar 3)) Remember that any Links are not behind pictures, but in the colored text.

Definition of craft (kr ft) n. 1. Skill in doing or making something, as in the arts; proficiency. As my introduction prefaced at >> https://truthfulkindness.com/2014/10/02/arts-crafts-dementia-intro/

I feel most “alive” when I am creating something, so these are some of my tools for feeling alive.

Traditional Styles of “Crafting”:

Craft with pens: Due to Book “Yoga for your Brain: A Zentangle Workout” by Sandy Steen Bartholomew, I began “Doodle” craft, with sample above. The procedure creates an almost-meditative state.

Craft with music: My search for “Pentatonic” instrument, combined with my lifelong research into culture and languages of the ancient scriptures gave me the idea of masking two notes to create a Pentatonic scale on ancient Nevel harp. Impromptu video (no script or organized “song”) at >> https://www.youtube.com/watch?v=aub51qOyGtQ&feature=youtu.be

2018 update: Now unable to tune the Lap harp, so gift of pentatonic drum. Beginning at about 7min into presentation, i demonstrate a few notes of my “hapi” drum at >> https://youtu.be/mCB_gnsniCc

Craft with fabric: Since eventually I will be unable to dress myself, and my husband will be dressing me, I have taken some necessary precautions (LOL). My husband is very thoughtful, and is one of those rare and irreplaceable romantic men. He is also extremely creative with woodwork … but … no human is perfect and he is careless with color; it is just not important in his world. Since color is very important in my world I have limited my wardrobe to only things that can be worn together indiscriminately. I wear black pant or skirt (gathered waist to enable easy pull-up), black or purple turtleneck, and then I sew decorative printed aprons, collars, and accessories (such as the fabric yo-yos worn in my hair, photo below) to be worn over them for interest & to protect from the spills that are inevitable when I eat.

Craft with yarn: cap, collar, cuffs, etc, meet my need for crafts of shorter time periods. Altho it can take many tries to get one piece like collar above. >> https://truthfulkindness.com/2015/09/22/craft-project-week/

Craft with words: I write to discover what I think about a subject, what I feel about a subject, and what to do. Consequently my lifetime has been filled with words. This poster was created for Dementia Mentors in memory of my relationship with my maternal grandmothers and their dementia paths.

Non-Traditional Crafting or Creating:

Create with hair: In my search for a way to style my hair so that it could be a longer length without added problems for my caregiver as this disease advances, I discovered this hairstyle. Then I forgot a few times how to do it, so prepared this video >> https://youtu.be/2YBKOOVbuQE

Create with food: I do very little cooking. Since I keep forgetting how to make coffee, and have difficulty counting ingredients for recipe without getting distracted and losing count, I can use one of those small coffeemakers with the pre-measured packets like you get at motel. >> https://truthfulkindness.com/2014/10/28/arts-crafts-dementia-cooking/

Create with plants: Since I have a “black thumb”, I won’t include any examples of this “craft”. Next week I hope to have pictures from my friends, and a couple have excellent samples of the craft of creating an environment with plants. >> https://truthfulkindness.com/2014/10/14/arts-n-crafts-samples/

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Arts ‘n Crafts after Dementia Diagnosis – Intro

Posted on October 2, 2014 by Truthful Kindness

Tru here. October was always month of creativity at our house. Trick-or-treat meant we needed to prepare gift for each house we visited. Some years it was physical gift like autumn greeting card, but some years activity gift like song or very brief skit. One year we did dance/acrobatic performance at each door for Halloween. Every October was full of question “what can we do or give this year that will make each household smile?” and one year we were in the local newspaper. So this month blog entries will reflect my seasonal focus for that. I will start with generalizations and goals. Next week hope to provide examples of personal projects from fellow PWD. Later plan to finish with specific challenges, tools and techniques … so stay tuned!

Just as loved ones need to let go of comparison and learn to appreciate what remains, so do we as Persons With Dementia. Immediately after graduation, I began learning architectural symbols and styles. When I ran a small business of education-oriented childcare while living in Italy and then USA, I continued to gather information and dreams of architecture. During bathtime, after working 10-hour days in the business world, my hand held pencil for either prose or architectural drawings. My dementia symptoms showed at work beginning Feb 1999. Within the first few months of the year 2000, I was no longer able to hold a job, so was able to resume my love of many other activities – including architecture. It took a very long time and several years of revision, but during 2003 and 2004 I created and submitted the various architectural blueprint drawings for building this “Craftsman”-style two-story house with full wrap-around porch. I was the architectural engineer and my husband still remains the carpenter/plumber etc. But I cannot allow myself to COMPARE this project with my current abilities. It needs to stay in proper perspective in order to make the most of my years with dementia. If I compare those drawings with my current projects I feel small, helpless, and useless; a shadow of my former self. I hold some poems and writings from my past in my memoirs book, but if I COMPARE those with my current blog postings I feel stupid, inept, and inadequate; I am motivated to give up writing rather than continue the craft for as long as possible, maximizing this window of communication with the world.

I was diagnosed on July 23, 2012 at 10am. Later that afternoon I wrote to my husband: “I want to take out a loan in order to finish construction of the house, with very large craft room in garage. Creating makes me feel alive, so I want to THINK that I can do sewing and stuff for as long as possible (even after I am not really capable of doing it).” We expect my craft room available to begin filling on October 15, 2014, still with no mortgage on this house since we built only as money was saved and available. (Our children can testify that except for charity we are very very tight with our funds.)

I need to focus on what remains of my abilities, gathering tools and techniques to maximize those capabilities so that I will retain my motivation, skills and feeling of creativity as long as possible. October blog focus will be on arts and crafts of various types, within the windows of my fellow Persons With Dementia. Hope you will share and look in on this blog next week.

LINK:

Index of my own Arts and Crafts projects at >> https://truthfulkindness.com/about/life-other/arts-crafts/ .

* 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 2014-10/02.
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My Brilliant Scattered Conversation

Posted on September 29, 2014 by Truthful Kindness

Tru here. I have heard others get offended when folks “dumb-down” their conversation, implying we as PWD (Persons With Dementia) are stupid. At my current stage of progression I appreciate that action instead.

My brain still holds amazing clarity and brilliant insight — in scattered, seemingly-random floating sparks. It is just so very difficult for me to find the particle I am looking for because the distance between them is growing exponentially. I am not stupid, but at this rate my bits of brilliant insight will be scattered across space like the sparkling milky way.

Every sentence you say is a jigsaw puzzle of scrambled sounds that my brain is trying to make sense of. So PLEASE pause between phrases and speak slowly in order to give my brain a chance to compose meaning for those seemingly-random sounds.

… … …

Similar to others with dementia symptoms, one loud sound or bright flash of light creates a pinball-effect in my brain, with thoughts bouncing long after the sensory stimulation occurs, but not able to stay in one spot long enough to assign meaning for any piece. And unfortunately, as time goes on, individual moments of stimulation feel progressively intense.

Maybe, just as pain stimulus of an infant becomes progressively desensitized with time out of the womb, maybe memory is used to hold that de-sensitization process. Maybe as memory is less and less able to hold current events, sensory stimulus appears exponentially stronger, because there is no experiential context in the memory. This MAY be a reasonable theory.

… … …

I typed these pieces of notes from my cell phone, hoping that I could later finish and connect the thoughts. It has been over eight hours and I can’t seem to even grasp what I was talking about, let alone get to the point where I could continue thoughts or bring threads together like I had hoped. Posting as-is with picture I spent most of the day creating.

Update: I have been asked how I created picture. I spent a couple hours making little black dots of varying intensity in my basic desired shape on white index paper (because took several Photoshop courses 10yrs ago & use Photoshop several times a day, so was sure I could use Photoshop to make it a negative). Tried each one of the Photoshop filters & could not find what was looking for … apparently I remembered wrong. So went back over each filter again looking for alternatives. Found several filters that emphasize edges (don’t remember names). After that I selected background “space” & painted it dark purple, then subtly revised coloring with another filter (don’t remember which) creating slight shadings of blues and reds from the background purple. Then used the clone tool finalizing the shapes for picture. Using filters takes me a lot of time because (just like finding physical tools in physical drawers) I keep forgetting where things are and what they do, so every few minutes I need to back & open drawers to look again. Sometimes I can look straight at a physical tool I use daily (like a hair barrette) and not register its use, so it is no surprise that looking at a word in “filter” column of Photoshop menu does not trigger memories for its function. At any rate it took slightly over 8hrs to compose picture but I think it portrays my thought. 😀

* 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 2014-09/29.

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David Kramer, Living Well with Alzheimer’s

Posted on September 26, 2014 by Truthful Kindness

These are recent excerpts from FaceBook page of my fellow Person With Dementia (PWD) friend, retired Doctor David Kramer, who is “Living Well with Alzheimer’s”:

Living Well with Alzheimer’s Sept 26, 2014 at 7:31am: Words count. Those of us with Alzheimer’s and related dementias are very sensitive to what is said to and about us. This is understandable. Those of us in the early to mid stages still hear, think, remember, feel and understand. There is even evidence that those in the late stages connect better than previously thought. Hence we take word choice very personally. There is still both a significant stigma and preconceived notions surrounding Alzheimer’s, just as there was years ago with cancer. Just because you forgot where you put your keys yesterday doesn’t mean you are like us or that you understand what we are dealing with. Please don’t say “Don’t you remember …?” Not only don’t I remember, but I am incredibly frustrated that I don’t and that it happens all the time. When you ask me to do two things and I only do one, simply ask me again to do the other. If you are frustrated by needing to remind me, think about how I must feel!”

Most importantly, don’t ignore us because you don’t know what to say. We want to talk, interact, live, laugh, and love. We will forgive mistakes stemming from good intentions and respect your efforts. We are all human. We know we need to educate about dementia and we are working hard to do so.

So yes, words count. And you should choose them wisely. But better to err in your choice than not to choose them at all. Now, share your understanding and … Stay tuned!

Living Well with Alzheimer’s Sept 25, 2014 at 9:45am: For TBT a glimpse of me over 30 years ago during my residency training in the emergency department at Detroit Receiving Hospital. Happy to say that I haven’t changed a bit! Hope you enjoyed the laugh! Stay tuned!

David Kramer‎ Living Well with Alzheimer’s Sept 26, 2014 at 4:45am: No test, or research study for that matter, is perfect. This study might have been improved by looking at beta amyloid PET scans also. PET scans show function in addition to structural changes. Of course, plaques and tangles have been found on autopsy in patients who have had no signs or symptoms of cognitive decline. Thus there is clearly a role for neuropsychological testing for symptomatic patients. Key to this is repeat testing in order to demonstrate progressive decline. The simple fact is that we are still unsure of the anatomy and pathophysiology of Alzheimer’s and many related dementias. Research is ongoing, but a magic bullet still seems like a distant dream.

That’s another reason to also concentrate efforts toward improving the plight of those currently living with dementia! Please join me in those efforts. Neuropsychological Test Beats MRI at Tracking Dementia Diagnosing Dementia alzheimersweekly.com

Living Well with Alzheimer’s shared a link. September 24 · 9:31pm: The brain may perform better on a high fat diet. The Ketogenic Diet as a Treatment Paradigm for Diverse Neurological Disorders [[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321471/]]
Dietary and metabolic therapies have been attempted in a wide variety of neurological diseases, including epilepsy, headache, neurotrauma, Alzheimer disease, Parkinson disease, sleep disorders, brain cancer, autism, pain, and multiple sclerosis. The impetus for using various diets to treat – …

Living Well with Alzheimer’s September 23: Priorities, folks! … It’s all about quality of life; making the most out of every single day. Every one of us has a death sentence. Stop counting the days in your life and start measuring the life in your days!

Tiffany and I took a wonderful walk on the beach this morning. We held hands, talked, smiled, laughed, sang. Life is good. Make the most of it while you can. Now do something that gets your heart pounding your face smiling and … Stay tuned!

Living Well with Alzheimer’s September 21: “Houston, we’ve had a problem.” I’m not talking about Apollo 13. For those of us with Alzheimer’s, it’s an image problem. We don’t LOOK sick. Check out the “before” and “after” Alzheimer’s pictures below. Not Tiffany, me. 🙂 People with dementia often look well. That’s one reason why we have to work so hard to raise awareness! Now, click on “share”, make the most of this beautiful day and … Stay tuned!

Living Well with Alzheimer’s September 18: Yep. Everyone of us with dementia has asked that question! So have our caregivers. Turns out there is no script, no predictable path or sequence. Each of us is a different shade of grey (and there are many more than 50). Every day is one big surprise after another. Tiffany said I was crying in my sleep last night. The good news is I don’t remember it at all. Over breakfast I got east and west confused. Crazy, right? So what! We are getting really good at rolling with the punches. I would love to hit ol’ Alz with a combination that knocks it out but that simply isn’t in the cards.

What is in the cards? An evening listening to The Blu-Tones, maybe a cruise with my BFF (that’s Tiffany, of course), and definitely another beautiful Naples day with a beautiful Naples sunset. Mr. Alz, hit me with your best shot! I dare you. 🙂 Now get out there, enjoy the hand you’re holding, and…Stay tuned!

Living Well with Alzheimer’s September 17: Hugs. Sure they feel good, but they are so much more! Non-verbal communication is huge for everyone. Hugs are actually therapeutic for those of us with dementia, and are probably better for us than the medications we take. I recommend a diet rich in hugs! No one is allergic and there are no side effects. Now get out there, hug someone and … Stay tuned!

Living Well with Alzheimer’s September 16: Focus. One thing at a time. This is so important for those of us with dementia. We have huge trouble with multitasking. If I am asked to do two things, I have to write them down or I will need a reminder to do the second one. Trying to remember multiple tasks involves continued repetition in my head and limits my ability to give my full attention to either one. Tiffany has noted this problem and thus waits until I have completed what I am working on before bringing up anything else. This is why people with dementia have so much difficulty participating in a conversation with more than one person. We try to focus on one person’s comments and then miss others’ points. Very frustrating, but that’s life.

I’m focusing on making the most of today. How about you? Now get out there, have a great day and … Stay tuned!

Living Well with Alzheimer’s September 14: Attitude is key! I’m not saying that Alzheimer’s doesn’t suck. Of course it does. But it is what it is. There is no cure on the horizon. No magic bullet. A medicine that stops Alzheimer’s in its tracks or even slows its progression reliably, significantly and safely is likely light years away. For those of us who are currently patients, there is no point in banging our heads against a brick wall. We can’t afford to kill any more neurons than we already have. 🙂 So we are left with only two options. One is to make the best of a lousy situation and the other is to roll over and play dead. I choose the former. I choose to fly!
The view from here is beautiful! Who is joining me?
No go out, spread your wings and … Stay tuned

Living Well with Alzheimer’s September 12: ”The idea is to DIE YOUNG as late as possible”. I couldn’t have said it better! It’s all about quality of life and maintaining it for as long as possible. I’m not interested in more days. I’m interested in LIVING WELL for more days. This is an elegant way of saying that I’m on the 20 year plan without progression of my Alzheimer’s. Who’s joining me?
Now go kick some dementia butt, have a great day and … Stay tuned!

Living Well with Alzheimer’s September 11: It’s TBT and Abem has been feeling a bit left out. She continues to do well in her training and is getting quite good at “Find mom”, “Find dad” and “Let’s go home.” Abem is a wonderful, loving companion and is well-behaved wherever we take her. What a wonderful dementia dog! … Have a beautiful day and…Stay tuned!

Living Well with Alzheimer’s shared a link. September 7: The genetics of Alzheimer’s is complex. Three minutes is all it takes to see why! The Genetics of Alzheimer’s. This is “The Genetics of Alzheimer’s” by David Shenk on Vimeo, the home for high quality videos and the people who love them. [[ https://vimeo.com/93665478 ]]

Living Well with Alzheimer’s September 6: … what really surprises me is how little support there is for those of us who are living with Alzheimer’s and related dementias. So much is spent on fruitless research for treatment and a cure, while so little is spent on current patients and caregivers. Research is important and certainly has its place, but those living with the disease deserve far more attention, understanding and support than is currently available. I am now officially off my soapbox. Now go out, have a great day and … Stay tuned!

Living Well with Alzheimer’s shared a link. September 6: Take a look at the future with Alzheimer’s. It’s two and a half minutes and worth every second. Warning! It’s not pretty!

Alzheimer’s: An Urgent Epidemic. This is “Alzheimer’s: An Urgent Epidemic” by David Shenk on Vimeo, the home for high quality videos and the people who love them. [[ https://vimeo.com/93665475 ]]

Living Well with Alzheimer’s September 5: Early morning walk on the beach followed by coffee and the newspaper while soaking up the beauty of life. Talk about living well! We love the club we joined. It’s called La Playa (The Beach). Paradise! Enjoy all the beauty that surrounds you and … Stay tuned!

Living Well with Alzheimer’s shared a link. September 3: Definitely worth your three minutes since you are already here anyway. It’s a bit simplistic, but still explains a common progression and average timetable for Alzheimer’s. Interestingly, plaques and tangles are also found in elderly people without symptoms of Alzheimer’s. Kind of throws researchers into the whole “which came first, the chicken (Alzheimer’s) or the egg (plaques and tangles)?” conundrum. This is also why current treatment is lacking and a cure is a long way off. But life, life goes on.

Also, not everyone goes through each phase as described. For example, I plan on waiting 20 years before I progress at all! After all, I’ve got a lot of Living Well with Alzheimer’s still to do. 🙂 You can help by spreading the word and … Stay tuned! [[ http://blog.thealzheimerssite.com/understanding-alzheimers-in-three-minutes/&utm_source=social&utm_medium=alzaware&utm_campaign=understanding-alzheimers-in-three-minutes&utm_term=20140818 ]]

Living Well with Alzheimer’s September 1: A good friend reminded me that “You have to play the hand you’re dealt.” I couldn’t have said it better. Every one of us with dementia has different cards but is trying to play as well as he can. Please try your best to understand and keep us in the game. Now go have a great day and … Stay tuned! “Life may not be the party we hoped for, but while we’re here we should dance.”

Living Well with Alzheimer’s August 31: A huge shout out to all 635 of you for “Liking” this FB page! And extra kudos to those of you who follow it on a regular basis. This page is lots of fun for me and very therapeutic. Your warmth and kindness come through in your “Likes” and comments are very much appreciated! Although I have my low times, I much prefer to dwell on the positives and all of you make it much easier to do so. So, know that you are valued and make a positive impact on our lives.

Oh, one important hint here. Tell your friends about this page and keep in mind that the more often you comment and “Like” our posts, the more likely I am to remember you! 🙂

I’m going to have a great day and hope you do too. Oh crap! I almost forgot; and … Stay tuned! 🙂

Living Well with Alzheimer’s August 30: Looks like Alzheimer’s Best Practices to me! And good advice for everyone. Have a wonderful day and … Stay tuned!

5 Lessons in Life from Dr. Seuss:

Today you are You, that is truer than true. There is no one alive who is Youer than you.
Why fit in when you were born to stand out?
You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose.
Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.
Today I shall behave as if this is the day I will be remembered.

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Robert Bowles, PWD

Posted on September 24, 2014 by Truthful Kindness

Today I want to tell you about my fellow PWD (Person With Dementia) friend, Robert Bowles, and what motivates him for living with a dementia diagnosis well. The introduction is by his daughter Ashley on July 1, 2014:

I sit here a grateful, amazed, and proud daughter. … My Dad inspired me as a pharmacist, and he inspires me even more today with his hope, optimism, and FAITH! My Dad and the late great Mike Ellington were “hospice” before hospice was around. They had an IV home therapy business and gave IV nutrition, morphine drips, and whatever else was needed to comfort many people in the surrounding area. My Dad brought compounding to Thomaston/Upson County. … He was the first in the area to compound Phenergan gel that got many women through tough pregnancies and helped many parents get sick kids through the night. My Dad brought diabetic shoes and inserts to Thomaston/Upson County. He brought a focus on diabetes education to this area that many stores are now carrying on. My dad gave medicine to people who couldn’t afford it; he held checks until payday for people who needed their medicine right then. He even bought a cell phone for one diabetic customer so she could receive medication reminder alerts via the phone to become compliant with her meds. My dad was as innovative a businessman as you’ll ever meet. He was constantly learning new things, taking classes, going to conventions, getting certified, and doing whatever it took to be on the cutting edge of pharmacy. It is impossible to quantify my dad’s impact on the pharmacy profession or on the lives of people in the surrounding counties. Now he fights bigger battles … with the same courage, optimism, dignity, and faith that he demonstrated during his career. I am so proud to call Robert Bowles my Daddy!

Excerpts from Robert’s FaceBook page:

2014 Jul 19: Often times when an individual receives a diagnosis of some type of dementia; they feel like their life is over. It is important for the person with dementia to stay active, exercise, stay engaged and continue to do as much as possible. When I was diagnosed in June 2012, I read what the life expectancy was for dementia with Lewy Bodies. My thoughts were they are only statistics. My goal at that time and still today is to defy statistics. My diagnosis simply gave me a different venue to do the things that I had tried to do all my life. I received the report from my neurologist this week. To me, it was very encouraging. It showed that even though I was in the mild dementia range; my level of cognitive function has remained largely stable without having the orthostatic hypotension, slurring of speech or supine hypertension. Additionally it states, given the persistent Parkinsonism, dementia with Lewy bodies remains the most likely etiology. All I know is that God has given me a new purpose in life; and I refuse to let dementia with Lewy bodies rule me. Instead, with God’s love, mercy, and grace; I intend to rule it.

2014 Sep 11: Each time things deteriorate, it gets more difficult to accept the “new normal”. Dementia is such an insidious disease that acts as a thief coming in the middle of the night. God’s promises continue to sustain me through these changes; and I am thankful that He will never leave me nor forsake me. He is with me always.

2014 Sep 16: I am realizing that I am now taking one more step in my journey with LBD (Lewy Body Dementia). Some things are easier to accept than others. Even though I have taken another step, God continues to sustain me through these changes. We serve an awesome God. My passion for dementia advocacy and helping others along their journey keep me going.

2014 Sep 17: I like to call LBD the disease of many faces. When I wake up in the morning, I never know which face I will be wearing. Throughout the day that face may change many times. The new face may last minutes, hours, days or weeks. I just have no way of knowing. Take a minute to imagine the fastest and highest roller coaster you have ever been on. With LBD, the changes may be slower or faster; and they me higher or lower. We just never know. For me, there is one thing that is always constant; my God will supply all my needs.

2014 Sep 17: Even when LBD rears an ugly face, I am thankful that I always have hope. My hope is deeply rooted; and I cling to that. I still have a choice each morning of the attitude I will have. For that, I am thankful. I have choice each morning of whether LBD will rule me or I will rule it. For that I am thankful. I will always have the insatiable desire for me to rule LBD. It is a passion. Nothing will get in my way. I have a purpose in my life. For that I am thankful. One of the most difficult things that I experienced after my diagnosis was my loss of purpose. Often times, loss of purpose may lead to depression. I refuse to be depressed. While it took me several months to find my new purpose, I was able to find it and embrace it with as much or greater passion than during my 38 years of owning my own pharmacy. It allows me to advocate for dementia and care for other persons with dementia and caregivers. Finding my purpose greatly increased my quality of life. I became more active and more socially engaged. My friends are very near and dear to my heart. For each of them, I am thankful. My circle of friends simply increased after my diagnosis. I have new friends all across the world; those that I have met in support groups both persons with dementia and caregivers. These are my virtual friends. I know they are always there. I love each one of you. For that, I am thankful. I have my virtual memory café through Dementia Mentors. Here, we can laugh together and cry together; for we have each other. Mostly we laugh though because we all know that there is life after a diagnosis of dementia. I have so much to be thankful for.

Healthline

Distorted Decision Making in Kitchen

Posted on September 9, 2014 by Truthful Kindness

Tru here. I am not stupid but my thought process is definitely distorted and causes problems with my decision-maker.

It is not surprising that I forgot to close the lid of the shaker this morning, and dumped protein drink all over my self, floor, and counters. What makes it notable was the rationale. I remember thinking that I didn’t want to fill the lid with powder, so I purposely did not close the lid before I shook it.

It is not surprising that I repeatedly dump water all over the kitchen. What makes it notable is my rationale behind it. At the kitchen faucet, my water pitcher is full and overflowing again. Water is running down the back of the sink cabinet and on to the floor as I am desperately trying to get the container out from under the faucet, AGAIN forgetting that I am able to reach up and simply turn off the faucet. It is not that I am not thinking about what I am doing; I am simply thinking about the wrong things; AGAIN repeating the same mistaken thoughts in the same scenario.

It is not surprising that I repeatedly over-heat food. What makes it notable is my rationale behind it. I want to get my drink warm enough the first time. So every time my thought is “what is the worst that could happen — only that it burns my mouth if I am not careful … so I will be careful but I will make sure my drink gets hot enough”. Every time I forget that this is a repeating scenario. AGAIN I set timer for extremely long and I forget that the fluid will boil out all over the microwave. Sometimes there is no drink left in the cup. I have melted four special French-press mugs. In fact the last one I bought lasted less than a week before I melted it.

Now I have a note from my daughter re-installed on microwave door, reminding me that “My Cup Runneth Over”, but the problem is that these are symptomatic of my decision-making process and I never know when it will become dangerous.
Journal 2013-01/03

2014 Update: This symptom has not been solved, but has improved with use of Aricept.

2015 Update: still forgetting that if I shake protein drink with lid up then it will end up all over everything. Did it again today in fact.

2023 Update: A lot of things have changed in 10 years, and i am now seldom in the kitchen. Now husband prepares all my food; even mixes and pours my protein drinks. i have lost ability to predict (amounts of fluid, particles, time, etc). i now regularly have problems with how to get hot/cold (as reflected in my adding water to dog food). My tremors are severe and do not allow for pouring or serving.

* 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. Embellished photo of my “Desert Rose” pitcher for this featured image.

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Healthline

Nightmares and Hallucinations of My Friends

Posted on September 6, 2014 by Truthful Kindness

Nightmares of Harry Urban

We talk a lot about what our life is like during the day time hours. It is hard and sometimes frightening. We struggle and get so confused. Have you ever thought what our nights are like when you are sleeping?

That is when we walk through our Hell, all alone. I have problems sleeping at night and my doctor explains I never go into a deep sleep, I sleep thinking I am awake, and my mind is racing out of control. The only one walking with me is my nightmares. My nightmares are different than most.

Yes they are scary but not from monsters or demons. I could fight monsters or demons but not my nightmares. They are just as fierce, if not more. They attack my weaknesses through my emotions. I am fighting myself from hopelessness and being lost with no purpose to live.

I am frightened to death when the time comes when I am not capable of raising awareness about my disease and become totally dependent on someone else. Nothing else frightens me about Alzheimer’s, not even death.

My doctor tweaked my medications and added one to help me deal with my sleepless nights but I wonder if this is the beginning of my worst fears. Will the medications I take to relieve me from my nightmares put me in the void I’m trying to avoid? Could the cure be worse than the symptoms? — 2014-09/05

Hallucinations: The Dr. Jennifer Bute (GP) story has been told October 2012 http://globaldementiavoice.wordpress.com/2012/10/18/jennifer-from-somerset-uk/ and January 2013 http://www.dailymail.co.uk/health/article-2269740/Jennifer-Bute-knew-dementia-So-did-tests-say-I-OK.html#axzz2JyPvu11a, along with her website http://gloriousopportunity.org/. In these she mentions experiencing various hallucinations before she began dementia medications.

When I asked about hallucinations, Jennifer offered the following information:
“I have really unpleasant olfactory hallucinations; I am frequently overwhelmed with bad smells. These can vary from turning round to see who is blowing cigarette smoke over me to scrubbing my shoes because I think I have trodden in something or wondering why no one else is bothered by blocked drains or open sewers. I was told recently by my family that a perfumer, or someone trying to compare perfume smells, might use the smell from freshly ground coffee to erase the earlier smell of another perfume and suggested I try it. So I did and to my amazement it worked but so far have only tried it when I am home. I need to find something to carry around with me perhaps I should obtain a bottle of smelling salts!” — Jennifer — 2014-09/03 message

* 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.

Healthline

Dementia Nightmares -TLK

Posted on September 3, 2014 by Truthful Kindness

Tru here. I plan to include experiences of several others during this week, but this posting is my own experiences.

Reality has rotated; “Consensus” reality (recognized by other persons in my everyday environment) has stepped back and feels more distant — displaced somehow by vivid, ultra-realistic dream reality.
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Truthful Loving Kindness:

The world of my dreams has become so terrible that it doesn’t even wake me when I get home (in my dream) to discover that my small dog was put on a roasting spit as dinner for guests to my surprise birthday party. I am sad and angry, but not awake. Earlier this week it was cannibalism and that didn’t wake me either.

It has become normal.

Lately, my dream world has been a consistently horrifying reality. It is hunger … and full of the things people can do to one another in an environment of terror and hardship. The pressure never lets up to allow rest.

What so disturbs me is that it does not terrify me any longer. It doesn’t even surprise me. It has become normal!

These have been wearing me down for months, but before it was just work. For months I have been working all night trying to solve problems, trying to teach children, trying to do this and trying to do that in a horrid, negative environment. In the morning I remember the dreams for a few minutes then they are swept away by my daytime work of trying to deal with this daytime world. And I forget about the night-time world of my dreams … until I again go to sleep and discover myself in this same awful environment, trying to help a different group of people.

Earlier this week, the dream stayed long enough that I still remember the picture: I got to the boxcar that was my home in most of the dreams, and a group of hirsute women were hiding there. They shaved their faces but body-hair looked like natural turtle-neck shirts under their clothes. They were outcasts from the ragged society existing in that environment, and I spent the night assisting them. When I awoke all I remembered was seeing them hiding in my home.

Every night there are several assignments (multiple dream installment-episodes) and I am tired.

I am tired but almost always I am able to make a difference.

In my dreams I have in some way bettered the life of those children, and those women, and many other persons that I don’t remember at all. My night-time life is scary but rewarding … and exhausting.

My life is very exhausting.
2012-09/21 at 6:30am

Norman McNamara’s “Planet Lewy Body” http://tdaa.co.uk/the-planet-lewy-bodys/ sounds like it is very similar to my dream-world.

UPDATE: These very vivid dreams began several months before my dementia diagnosis, and became rare after I began Aricept prescription.

* 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.
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Healthline

Weekly PWD Paper Available Online

Posted on August 31, 2014 by Truthful Kindness

Tru here. New Sunday paper began in August 2014 titled “Thru the Looking Glasses of PWD: Read our Sunday paper to see Dementia “Thru the Looking Glass” of fellow PWD (Persons With Dementia) Life Perceptions”. This is currently edited by Truthful Loving Kindness and updated each Saturday night online. https://paper.li/f-1408973778 . Subscriptions are available delivered to your email.

My hope is for this to hold weekly creations of Persons With Dementia all over the world. Considering admission of not only writings but art. Holds any updated blogs from fellow PWD whom I know. If you have personally written material as PWD, please contact me.

First issue was created Monday August 25, 2014 and highlighted Christine Bryden’s “Dementia from Insider’s Perspective” in Australia. The next issue went online Saturday night, August 30, 2014 and highlighted Susan Suchan’s speech in Tulsa Oklahoma.

* 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 2014-08/31.
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