PWD Index Mo 2015-09 (September)

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This month’s rotation will start with “E” for given names in alphabet (so end with “D”). 

Link Index for this month’s Newsletter,  gathering primarily September 2015 material from 50 different persons, with a total of almost 80 different links published Friday, October 30, 2015.  An additional 45 links have also been categorized here (but not included in NewsLetter) for a total of  125 links listed and categorized below.

Below is the index for August entries in the re-titled dementia “Symptom Perspectives” newsletter.
Since there has recently been hot debate about who has the right to call themselves “PWD”;
in what level of diagnosis is necessary to wear this label, and how often patient must be re-examined in order to retain the label,
(along with fact that USA is beginning to eliminate term “dementia” from diagnosis),
I am beginning to eliminate the “PWD” label from my vocabulary.  …  So now newsletter title reads

Dementia “Symptom Perspectives”;
See life “Thru the Looking Glass” of our dementia SYMPTOMS. Apply resource of lived experiences, & watch your own PWD relationships blossom as result.
Includes projects from persons with diagnosis of “Dementia” in various types … & includes MCI patients.

Hoping these changes of terminology will minimize misunderstandings and maximize participation.

I would like to thank each person sharing their personal life.  My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.
Blog & webpage links is the last entry in newsletter at

symptms, hearg, noise 09-Sep 1story Agnes Houston Sensory: Hearing
symptms, sensory 2015 2proj Agnes Houston Proj: Sensory Challenges pdf
Caregiv, advocacy 16-Sep categ Agnes Houston Dementia Angels
relat, commun, laughtr 09-Sep 1story Alice Sands Laugh with us
Dx, emot, coping, exerc, relat, 13-Sep 1story Andrew Garvey My Life w Dementia
Dx, PCA, prspectv, hope 29-Sep 1story Anne MacDonald Hope & Dementia Diaries
advocacy, D Diaries 17-Sep 2proj Anne MacDonald Proj/Dementia Diaries
symptms, SunDn, coping 27-Sep 1story Barry Pankhurst SunDowning Burnout
sleep, symptms, night, terrors 19-Sep 3vid Barry Pankhurst Proj/vid: Sleep Deprivation
language, Geog-Indonesia, media, advocacy 07-Sep categ Barry Pankhurst Proj/intrvw: TV/ Indonesia
cnstr, symptms 11-Sep categ Barry Pankhurst Proj/House Renovation
poetry, prspectv, symptms 12-Sep categ Barry Pankhurst proj/poem: Destiny Befalls Me
symptms, hungr, prspectv 30-Sep 1story Brian LeBlanc The Easy Way
advocacy, symptms, genetics, 17-Sep 3vid Brian LeBlanc Proj/speech: Best Job
stigma, commun 21-Sep categ Brian LeBlanc World Alz Day
recipe 22-Sep 2proj Cecil Ristow Proj/recipe: eggs in micro
advocacy, coping 07-Sep 2proj Christine Bryden Proj/intrvw: prepares2step back
symptms, relat, indep, recovery time 15-Sep 1story Cindy Stolz-Odell Worth the Price
FTD symptms, apathy, decisions, driving, relat, before2late 05-Sep categ Cindy Stolz-Odell Un-Comfortably Numb
stress, symptms, tips 23-Sep categ Cindy Stolz-Odell Reaction to Stress
emot, valu, relat, impuls-cntrol, decisions 30-Sep categ Cindy Stolz-Odell Do I Really Matter
fam, prep 27-Sep 1story Daryl Lees Little Update
symptms, Dx, $ 20-Sep 1story David Esquibel Alz can Strike Early post&utm_content=Link Pos 0
Dx, testg 19-Sep 1story David Hilfiker Should U B Testd
Dx, symptms, MCI 2014 ?? 2proj David Hilfiker Proj/vid: MCI at bottom of pg
media, resrch 16-Sep 1story David Kramer Media Sensationalism
Rx 26-Sep 2proj David Kramer Dave & the Drug
symptms, pacing, discomfort, pain, over-stimulatn, emot, 20-Sep 1story Faith Riverstone On Pacing
coping, noteBk, signs 12-Aug 2proj Faith Riverstone proj/NoteBooks
symptms, emot, gratitude 10-Sep categ Faith Riverstone Words … Like Life Jackets
caregiv, greetgs, role 19-Sep categ Faith Riverstone What you Act like
soc, AlzWalk, commun, role, relat 26-Sep categ Faith Riverstone The Walk 2015
symptms, Dx, apathy, emot 12-Sep 1story George Huba PhD 4Types/Apathy
symptms, art, commun 09-Sep 2proj George Huba PhD Proj/mindMap: Changing Style
stigma, expectations 07-Sep categ George Huba PhD Do Not Assume
re-learng, prspectv, flexibility, tenacity 08-Sep categ George Huba PhD 1Skill Needed
resrch, sports, head-injuries 20-Sep categ George Huba PhD 3Docs & Football
symptms, directionl problms, direct questions 04-Sep 1story George Rook Where … is Right
socProb, $ 10-Sep 2proj George Rook Proj/Conf/Telford: Dementia is not Cancer
SocProb, caregiv, respite, 21-Sep categ George Rook Post Dx Support
concurrnt hlth issues 28-Sep 1story Gill HS Green Re-Evaluating Again
netwrkg, audio-diary 29-Sep 1story Gina Shaw Audio Diary Award
D-Frndly, shoppg 21-May 3vid Gina Shaw Proj/intrvw/vid: Small Changes
time, place, lost, tech, disorientd 19-Aug 1story Gord Settle Timing is Off
projects,  coping 24-Sep 2proj Gord Settle Proj/Saw Near Completion
relat, symptms, Rx 21-Sep 1story Greg O’Brien The Irish Sea
lit, advocacy, Dx, symptms 29-Sep 2proj Greg O’Brien Proj/intrvw:  Dr Ann West
wrds, advocacy 04-Aug categ Greg O’Brien Right Words
end-of-life, symptms 19-Sep categ Greg O’Brien Proj/How to Die
emot, commun, name,. relat 08-Sep 1story Harry Urban Communication in Sept 2015
advocacy, prspectv 04-Sep 2proj Harry Urban Advocacy in Sept 2015
crafts, creativity, loss 02-Sep categ Harry Urban Crafts in Sept 2015
footprints, mission, spiritual 13-Sep categ Harry Urban Spiritual in Sept 2015
holidays, re-charging 16-Sep categ Harry Urban Recharging in Sept 2015
media, music 18-Sep 2proj Irwin Rosenstein Proj/intrvw: Music Mends Minds
visitg PWD, 09-Sep 2proj Jennifer Bute Proj/Lflet 4visitg PWD
past/present, advocacy, exhaustn, 23-Sep 1story Jo Bennett Lifts You Up
audio-Diary, advocacy 30-Sep 2proj Jo Bennett Proj/Dementia Diaries
confusn, relat, suffr, terms 29-Sep categ Jo Bennett Muddled
prspectv, past/present 30-Sep categ Jo Bennett Mustnt Wallow (in past)
FTD/PPA, symptms, commun, 01-Jun 2proj Joanne Douglas PhD Proj/intrvw: Forbes: When Words Fail
strategies/adaptations 18-Jun categ Joanne Douglas PhD Proj/Jrnl: 1st-Prsn Acct (but pay-per-vw unless member)
media 09-Sep 2proj Joe Potocny Proj/Fragile Storm
symptms, leadrshp, caregiv 24-Sep 1story John Quinn I Cant Explain
04-Sep 2proj John Quinn Proj/Bicycle trip: Moving On
advocacy, symptms, relat, coping, 31-Dec 1story Keith Oliver Alz Soc Rvw
symptms, solutns 21-Aug 2proj Keith Oliver Symptoms & Solutions
Dx, advocacy 27-Sep 1story Ken Clasper Better Than Expected
photo, art, memories 12-Sep 2proj Ken Clasper Proj/Photo: Teesdale Valley
Dx, speclists, trust 01-Sep categ Ken Clasper Reflectg on Dx Probs
end-of-life, spirituality 09-Sep categ Ken Clasper Assisted Dying
RV, vacatn, 21-Sep categ Ken Clasper Holidays
Dx, symptms, career 16-Aug 2proj Kenneth Martinez Proj/intrvw:vid news
prspectv, planng, coping 09-Sep 2proj Laurie Scherrer Proj/intrvw: Diving
Dx, emot, coping, exerc, relat, 16-Sep 3vid Laurie Scherrer Surviving Diagnosis
prspectv, symptms, caregivrs, srvDog, 22-Sep 2proj Lori Michaud Proj/intrvw: Nxt Steps
letting go, Rx, symptms 03-Jul 1story Marion James Marion James
music 03-Dec 2proj Marty Everest Proj/intrvw: Giving Voice Chorus
Dx, genetics, prspectv 17-Sep 1story Matthew Oliver Sept Intro
bed-blockrs, SocProbs, commun 17-Sep 1story Melvyn Brooks Bed-Blockers
exrcise, needed, caregiv 01-Sep categ Melvyn Brooks … & I need her
politics, stigma, 28-Aug 2proj Michael Ellenbogen proj/intrvw: Ease Ban
Dx, terms, MCI, Rx 03-Aug categ Michael Ellenbogen Proj/intrvw: Dire Dx
prspectv 17-Sep 1story Mick Carmody Tiger
prspectv, advocacy 17-Aug 2proj Mick Carmody Proj/Poem: Positive or Denial
prspectv, laughtr 25-Sep categ Mick Carmody Laughing Out Loud
supGrps, relat 10-Sep 3vid Multi: Chris Roberts, David Kramer, Michael Ellenbogen, Myrna, Sid, SusanS, Tammy, TeresaW,  Proj/chat: This is My Voice UPDATE
best practices, recogniz LO 23-Sep 2proj multi: Laurie Scherrer, Harry Urban, Paulan Gordon, & Truthful Kindness Proj/intrvw: Best Practices & Recogniz LO
media, gov, advocacy 10-Feb categ multi: Michael Ellenbogen, Harry Urban Proj/intrvw/D Chats: Still Alice, G7 & United Against Dementia (w/ Harry Urban)
advocacy 08-Sep categ multi: Michael Ellenbogen, Harry Urban, Truthful Kindness Proj/intrvw: Advocacy wrk
symptms, terrors, night 01-Sep 1story Norman Mc Namara LBD The Truth
vacatn, caregiv, travel 06-Sep 2proj Norman Mc Namara Proj/ Prpl Angel Holidays
terrors, symptms 10-Aug categ Norman Mc Namara Living or Existing w LBD
advocacy, prpl angels 15-Sep categ Norman Mc Namara vid: Dementia 8yrs & Purple Angels
wandrg, socProbs, GPS, tech 29-Sep categ Norman Mc Namara Ostrich care GPS
music, coping 10-Sep 2proj Paul Hitchmough Music … Mind Clear & … Focus
symptms, tech, music, 19-Sep 1story Paulan Gordon Proj/tech: Kindle & Dementia
relat 01-Sep 1story Phillip Watmough Lots of Good People
emot, Love 23-Sep 1story Rick Phelps Never Take the Love
ID bracelet, tech 08-Jan 3vid Rick Phelps Proj/ID bracelet: Safe Return
indiv, symptms 30-Aug categ Rick Phelps It Depends
symptms, vision, eatg 18-Sep categ Rick Phelps Peripheral Vision
SocProbs, caregiv 02-Sep 2proj Sala Mar Proj/vid: Home Hlth Aids (45min)
symptms, hallucinations, memories 27-Sep 1story Silverfox Study in LBD
symptms, ministry, 26-Sep 2proj Silverfox Proj/Ministry discontinued
noise 09-Sep categ Silverfox That Noise
symptms, noise, balance, relat 19-Sep categ Silverfox LBD Second half
routine 24-Sep categ Silverfox Routine Routine Routine
Dx, CTE, advocacy speech 22-Sep 3vid Steven A Barbieri Proj/Advocacy speech Alz Walk SanFran
visitg PWD, 16-Sep 1story Tommy Dunne A Quality Visit
visitg PWD, 09-Sep 2proj Tommy Dunne Proj/Tips 4 Visitg
self-ID, prsnhood, prsnality 11-Sep 2proj Truthful Kindness Proj/graphic: My Philosophy/Personhood
symptms, hallucinations 23-Sep 3vid Truthful Kindness Proj/vid: Smell Hallucinations
terms, mentor, self-ID, enthusiasm4Life 01-Sep categ Truthful Kindness Best of PWD Gone ?
advocacy 08-Sep categ Truthful Kindness Change
craft 22-Sep categ Truthful Kindness Craft This Week
media, advocacy 04-Sep categ Wendy 7713 Media – Good & frustr
advocacy, HlthCare, nurses 08-Sep 1story Wendy Mitchell Student Nurses
med care, records, hosp 16-Sep 2proj Wendy Mitchell Proj: Hospital Experience
socProbs, travel 15-Sep categ Wendy Mitchell Minds n Voices Mtg HlthWatch
relat, commun 28-Sep categ Wendy Mitchell Defence of Damian
writing, advocacy 29-Sep categ Wendy Mitchell in Defence of my Writing
art, commun, drwg 30-Sep 2proj Zel Caddey Proj/Art: Recent in Sep

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness and I retain full copyright for this matrix/spreadsheet. My current clinical diagnosis is Mild Cognitive Impairment and so far my time consumed on compiling this NewsLetter is 38hrs. Registered & Protected


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