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.

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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.

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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

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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.

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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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Live for Today

Posted on August 30, 2014 by Truthful Kindness

Link to Susan Suchan’s speech at 2014 Tulsa, Oklahoma Alzheimer’s Walk: https://www.youtube.com/watch?v=CQSXM5JHBlU . Transcript below:
It is wonderful to see you all here today, thank you. I want to tell you a little bit about my personal story.

About eight years ago I lost my sense of smell. I nearly burned my house down because I forgot there was something on stove and I could no smell fire. This was an issue so I went to my doctor and he ran me thru a gamut of tests, hoping actually for a synovial tumor. There was no tumor. Who wishes for a tumor, right? But there was no tumor which led me to a neurologist where I was told (after more testing) I had early onset Alzheimer’s. He told me to go home and live my life. There was nothing they could do.

… And that is what I did. I spoke of it to very few. I followed directions very well; I just lived life.

About two years ago I started having trouble with being lost in familiar places, and behavior that was very unlike myself. People around me thought I was going thru a mid-life crisis or menopause. I had no notion other than my life felt very different and chaotic.

When things became more physical I chose to go back to my doctor thinking hormones, cholesterol meds, … “What can we do?” “Where is the magic pill to fix these changes happening me?” After trial and error I ended up back at the neurologist who sent me to a neuropsychologist for a battery of tests. Very interesting but very very exhausting tests that gave diagnosis FTD (or frontal-temporal dementia).

I was told to go home and get my affairs in order — there is no cure. Being pro-active and independent, that is exactly what I did. Zip-zap, I had it all done, and then it dawned on me … What next; wait to die? No! There is diagnosis (and there ultimately is death) but there is LIFE in between diagnosis and death!

I challenge all of you to LIVE life! Grab it! Don’t let go of it because nobody knows what tomorrow brings.

I am 56 years young and I am living well with dementia. That’s because I have … Look at these people here today; that is just a small picture of what keeps me going. Thank you. Thank you so much.

I would like to say, for those of you who have a loved one, or who are newly diagnosed, things that have worked for me (try it!):

Routine … routine … routine! Whatever that be for you, don’t stop your routine.
Stay physical; take a walk. Swim.
Stay social. There are people out there who care. And things may change; just tweak it for you. Alzheimer’s has a wonderful website for caregivers and patients alike. There is also a wonderful new website, Dementia Mentors, where you can Zoom and talk one-on-one with people who are experiencing the same path as you are going on.

These are resources. Don’t sit down. Don’t sit down and stop living.

I would like, in closing, to thank each and every one of you for coming here today and participating/donating. Whether it is for someone you have loved, someone you care for, or just finding an end to this insidious disease and all dementias.

I am going to continue to use MY voice for all of us. I will no sit down chair and be over.

Live on everybody. Peace!

* 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.

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Video Driving with Dementia

Posted on August 26, 2014 by Truthful Kindness

Tru here. My Dementia Mentors video regarding Driving with Dementia was posted at dementiamentors.com/videos section on Sunday August 24, 2014. Some people have difficulty viewing Vimeo sources, so it is also posted at https://www.youtube.com/watch?v=IlXo8cvBpEc . (I still have not learned this application very well so if that link does not work then go to “truthfulkindness” channel on youtube.) Transcript of video is below: I am not going to suggest someone else is wrong in their course of action. I am just going to tell you why I PERSONALLY quit driving. Driving represents the independence of an adult; it is always a big deal. But dementia is the permanent loss of multiple intellectual functions. This influences my driving in that I have difficulty remembering where I am going, and how to get there. The memory problems may cause further distraction to what is already possibly a longer reaction time due to confusion “fog”. The two biggest factors in my decision were: 1) Financial consequences if an accident occurs (regardless of cause): I understand many jury members believe that it is gross negligence for a person with dementia to drive an automobile. With dementia diagnosis, my family could well be sued and held financially responsible. Thus consequences of potential legal liability must be a serious factor in decision of when to quit driving.

As Charles Warner, a retired lawyer wrote at http://www.alzheimersblog.org/2014/04/30/driving-dementia/; “Fault”, … depends on a number of factors. One of the steps often taken in auto accident litigation is to obtain medical records of the injured party. If there was any reason to believe any person involved in the accident was impaired in any way (such as with dementia) the medical records of that party may be obtained by legal processes. If you have been driving with a diagnosis of any type of dementia, you run a significant risk that fault for the accident may be assessed, in full or in part, against you. If you are driving and have not advised your insurance carrier of your dementia, there is reason to believe that they may not extend coverage to you under your own policy.

2) Emotional consequences if an accident occurs (regardless of cause): If I was in an accident and a person (especially a child) was hurt, could I ever forgive myself for the “what if”? What IF my reaction time was an element? What IF I was distracted by confusion? Even independence is not worth that “what if” for the rest of my life. So I did not renew my driver’s license.

Friend Robert Bowles also wrote about his driving decisions at http://lbdlivingbeyonddiagnosis.com/2/post/2015/08/driving-a-vehicle-involves-more-than-memory.html

* 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 2014-08/26. // <![CDATA[ (function () { document.write(“”);} () ) // ]]>

Healthline

Online Dementia Communities

Posted on August 20, 2014 by Truthful Kindness

Tru here.

AVAILABILITY of online dementia Communities:

Dementia Alliance International (DAI) sponsors several online video “support” groups, each with no more than ten members. My group gathers on Mondays. DAI also sponsors video group “Café Le Brain” online Memory Café, which I attended today (Tuesday).

Dementia Mentors (DM) has the video group Memory Café Wednesdays,

Forget-Me-Not has one Thursdays, and

Dementia Mentors (DM) has other Memory Café groups on Fridays and Mondays.

If I desire, each one of those organizations also has a text-based group that is available 24/7, in which many of us participate regularly. All the video groups and two of the three text groups are made up of primarily Persons With Dementia in the early stages.

Many Persons With Dementia have Early-Stage groups with whom they can meet physically. Considering that I chose to quit driving that would be a problem for me. Also, I live 2.5 hours drive from the nearest group, which makes the option rather impractical and expensive in time, gas, and fatigue. These online groups are free if I have a webcam (which are available as low as $10 from Amazon).

In addition to their weekly Memory Café groups, Dementia Mentors (DM) has weekly short and empowering videos (I personally have made two of them) instructing how to rule your disease, and offers one-on-one mentoring for newly diagnosed through video chat. These videos are also excellent for persons other than patient to understand the dementia patient’s perspective.

Dementia Alliance International (DAI) has monthly “A Meeting of the Mind” webinars on topics of interest to people with dementia (and we also say “and others facing the challenges of dementia in their own way” to be inclusive to caregivers and professionals). The next webinar will be September 23 and the topic is: Dispelling the Myths of Dementia. The panel will all be people with dementia.

During September, World Dementia Awareness Month, DAI will be holding weekly “Master Classes” as part of our new DAI University initiative. These classes will be for people with dementia, and taught by people with dementia. The classes are as follows:
Sept 3: I’ve just been diagnosed. What’s next?
Sept 10: My conversation with my doctor
Sept 17: Advocacy and speaking out
Sept 24: My conversation with my family

BENEFITS of online dementia Communities: DAI text group has 76 members, not all of whom are active. Virtual Memory Café thru Dementia Mentors has 39 members but there are seldom more than a dozen or so in the video meetings, and Forget-Me-Not (with many care-partners) has 1700, but again only about a dozen in video meetings. Consequently, despite my dementia, I have a wide-based peer group with which to interact. Because of this I feel much more “normal” than I have in past years, lowering my stress level and thus also lowering my care-partner’s. Additionally, the pool of knowledge available in these groups is quite substantial, with several types of dementia and a wide variety of occupations represented. We discuss symptoms and work-arounds easily and consistently. The opportunities for mentoring and discussing advocacy issues is tremendous and energizing. All in all, these groups have made a big difference in my life, and that difference is beneficial.

I encourage patient contact to Dementia Alliance International which can be found at [[www.dementiaallianceinternational.org]] and Dementia Mentors is at [[ https://www.dementiamentors.org/ ]].
Patients as well as care-partners are welcome at FaceBook groups Forget Me Not at [[www.facebook.com/pages/Dementia-Support-Forget-Me-Not/1487407131472045]] and Dementia Aware at [[www.facebook.com/groups/250325295027020/]] are available, along with several groups for specific types of dementia. There is also a written forum available at [[www.alzconnected.org]]. Links for PWD blogs are at top of page, in pull-down menu under “About and Links” title

* 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 text copyright on 2014-08/20. i believe i asked and received permission direct from Norrms, to use the PurpleAngel logo for this blog page.
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Healthline

Gillian thought PWD not valuable

Posted on August 20, 2014 by Truthful Kindness

Tru here. Edmonton Journal Link to article of August 20, 2014: Dead at noon: B.C. woman ends her life rather than suffer indignity of dementia (with video).

I have heard talk that in many countries suicide will be EXPECTED for those with disabilities (especially dementia) in the future, exactly because of the reasons Gillian discusses in the website she prepared; to spare the “meaningless care of a mindless body” and “wasteful expense” to a society that is financially responsible for her maintenance. Thus her statements are disturbing to me as the reflection of a possible step in that direction. Public expectation can be deadly.

It also seems obvious that to this woman we as fellow Persons With Dementia have no remaining value either.

In the news article it says she did not want to be a “carcass,” physically alive but “with no one inside.” On my grandmother’s deathbed, she didn’t recognize me but she knew that whomever I was, I loved her. She could no longer speak but her eyes reflected my love as she looked at me and squeezed my hand. She was surrounded by those who loved her and she knew it. Even in those last days she was VERY valuable! I am sad that Gillian did not recognize herself as valuable.

Some valuable comments are attached so check them out.
* 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 2014-08/20.
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Healthline

Person with Dementia Symptoms

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