Dementia Symptom Perspectives

This page of Dementia Symptom Perspectives is a very PUBLIC page. It is designed to share first-person perspective of those with dementia … to those with whom that perspective might be helpful.
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FORMAT by name of Person Living with Dementia (PLwD/PWD) here >>  https://truthfulkindness.com/dsp/person/
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Tru here at 11am Wed Oct 10, 2018 (on Dementia Symptom Perspectives’ FaceBook page).

As my last blog post stated yesterday, i can add entries to this Dementia Symptom Perspectives’ FaceBook page, but still cannot see the page as a whole. So My investment on Dementia Symptom Perspectives’ FB page will be declining. I will be sharing less often, and will eventually drop the FB page.
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Looking for alternatives format to share 1st-person perspective of those with dementia symptoms. Thinking i may just begin a new section on my blog, for daily Links from others … but no decisions yet.
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i put in 10hrs on dementia advocacy on Monday, and about 8hrs Tuesday. Right now, i have spent 4hrs today on dementia advocacy. So will spend another hour or two before bed, but will focus remainder of the day on other things … beginning with a nap, LOL.
— Love from
Truthful Loving Kindness
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CRITERIA

Update 2016-Feb-29: Tru no longer has abilities to continue NewsLetter, but is looking for alternate ways of making project matrix of links for past and current PWD projects available. Please see blog entry at https://truthfulkindness.com/2016/03/01/pwd-matrix-topics-201510/ which has link for current matrix including months Oct 2015 thru Feb 2016.
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CONTENT: I think almost ANY of these projects (written or otherwise) can be helpful to fellow persons with dementia symptoms, because it shows us different possibilities of projects that we ourselves might be able to enjoy attempting during the progressing stages of dementia, allowing us to document our wishes for the future (and/or begin collecting tools and supplies for various projects). At the same time, those same projects can show OTHERS (family, professionals, etc) that the person is still there. Yes they have changed … but every person changes.
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I would like to include as many persons with dementia as possible in the regular NewsLetter, because I think it can be an encouragement to continue attempting projects. In order to have as many participants as possible, NewsLetter must have limit of only one “story” and one “project” from each person with dementia symptoms. Unfortunately the NewsLetter program application cannot “see” links on FaceBook, regardless of whether the setting is public. There are a few other web providers that for some reason this program does not “see”. I try to provide pages in my blogspace for stories and projects from my PWD friends, in order to meet some of that need.
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NewsLetter “STORY” may be video, audio, or written, but must be completely composed by the person with dementia symptoms.
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NewsLetter “PROJECT” can be written, video, or photo account of project (one project this month is developing their Power of Attorney and another is a book finished and for sale), a compilation from several persons (such as a choral video project), interview with PWD, or arts/crafts/hobby by PWD, etc.
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First priority is to those recent entries which are helpful to fellow persons with dementia symptoms:
1) Suggestions for PWD;
2) Better understanding of symptoms and experiences;
3) Simple acknowledgement that we are not ALONE in experiences;
4) Variety of projects available.
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Second priority is to recent entries which are helpful to those in association/relationship with those persons, such as family, professionals, etc:
1) Suggestions for person WITHOUT dementia symptoms;
2) Better understanding of symptoms and experiences;
3) See PWD as still “there” – not becoming of lesser value.
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If very helpful, up to three additional entries per person can be included in the categorized index page, but only one story and one project per person can go into the regular NewsLetter.
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Hope to provide special future NewsLetter issues with Most helpful 2015 links, 2015 Links re Symptoms, and 2015 Links to improve Relationships. However, my own symptoms have created increasing complications with time requirements. I am making many more mistakes which must be corrected, and losing track of where I am in projects so constantly that I am now 3 months behind and I realize there is no hope of my catching up to schedule. I decreased NewsLetter schedule from weekly to monthly in January 2015, and January 2016 I realize I must further decrease schedule from monthly to seasonally in hope to continue the project at all. Very very much appreciate the offer to help in review of blog entries. Your time is valuable to me. LINK to NewsLetter is https://paper.li/f-1408973778 Above is copied from my 2016-Jan-05 blog entry on this subject at https://truthfulkindness.com/2016/01/05/dementia-symptom-perspectives-newsletter-2016/
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2016 from FaceBook:

Tru here.
2016-03/25: IMPORTANT Note: This page of Dementia Symptom Perspectives is a very PUBLIC page. It is designed to share perspective of those with dementia … to those with whom that perspective might be helpful. This page is open to alternative viewpoints, but they must be respectful. Comments from both Persons With Dementia symptoms and those without symptoms are welcomed only IF shared with respect and compassion. If we cannot build each other up, at least we will NOT tear each other down.

This page was begun by Truthful Kindness, but is now cooperative effort by several persons who have dementia symptoms. It is exclusively for writing, art, hobby, and other projects by persons with dementia symptoms (including those with diagnosis of Mild Cognitive Impairment as well as standard “dementia” diagnosis like Alzheimers, Lewy Body Dementia, Fronto-Temporal Dementia, Vascular Dementia and almost 100 lesser-known types of dementia). It may occasionally have entries with where spiritual or political aspects of life interact with the dementia aspects of life, but this is not ABOUT either of those aspects. No proselytizing of any type (political, spiritual or otherwise) will be permitted.

I no longer have abilities needed to issue the Perspectives newsletter, but I continue to use this page as a setup tool for my matrix on PWD projects.
I prefer not to duplicate other pages or groups who are already very good at what they do. These are suggested OTHER Groups:
1. Page/Dementia Info: Unless containing a personal interview project with Persons With Dementia symptoms, this page will not have “news” or other items like that. For that I highly suggest Chris Roberts’ page of “Dementia Information”.
2. Support Groups/vid/PWD+: For video-chat support groups to those persons with dementia symptoms (again including MCI) I suggest ” Dementia Mentors “. I believe that at least one of Dementia Alliance International’s video-chat support groups also includes those with MCI diagnosis.
3. Support Groups/txt/PWD+: Text support groups for those persons with dementia (including MCI) are available from Dementia Mentors, and “Living Healthy with Early Onset”, along with “Early-Stage Alzheimers” by PWD John Sandblom.
4. Support Groups/vid/ mixed: For video-chat support groups including both PWD and support/assistance persons there are both Harry Urban’s Friday “Forget-Me-Not Memory Café” and “Dementia Mentors’ Thursday night Memory Café.
5. Support Groups/txt/ mixed: For support groups including both PWD and support/assistance persons there are many groups within Harry Urban’s “Forget-Me-Not” umbrella of groups (including separate groups for some of the standard dementia types like Lewy Body and Vascular and even separate hobby groups). There is also a group begun by PWD Rick Phelps called “Memory People”, Karen Francis has “Caregiver Comfy Chair” and Sheryl Whitman suggested “Ask Those Diagnosed with FTD”. Norm Mac started “Dementia Aware”.,and others.
6. Advocacy Groups: For PWD advocacy issues suggest Dementia Alliance International” (but Dx of MCI is not currently included in membership) and Dementia Action Alliance (USA DAA is at www.daanow.org ). Generalized dementia advocacy issues suggest PWD Norm Mac’s ” The Purple Angel”.
7. Collaboration Group: Again, in USA, i suggest Dementia Action Alliance for that. Several other nations have DAA group with much the same goals.
Yes, my full legal name REALLY is Truthful Loving Kindness. My personal FaceBook page is found under the name “Truthful Kindness” and you can find more about me at www (dot) truthfulkindness (dot) com … under the “About Me” tab.
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(This “About Dementia Symptom Perspectives” will also be posted as a pinned entry on the page itself.)

* 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. Tags are: dementia, Dementia Symptom Perspectives, Persons Living with Dementia, PLwD, PWD.

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