PWD Index Mo 2015-08 (August)

SymptomPrspctvs 20150602a 2in300ppi

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

Link Index for this month’s Newsletter,  gathering primarily August 2015 material from over 50 different persons, with a total of over 80 different links published Wednesday, September 30, 2015.  An additional 30 links have also been categorized here (but not included in NewsLetter) for a total of over 110 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” (Persons With Dementia); in what level of diagnosis is necessary to wear this label, and how often patient must be re-examined in order to retain the label  — (and ALSO Medical vocabulary changes in USA) — I am beginning to minimize the “PWD” label from my own 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.

PWD
30-Sep index DSP Index 2015-08 https://truthfulkindness.com/links/index-links-newsletters/2015-08-august/
symptms, sleep 06-Aug story Agnes Houston Chnges in Sleep Pattrn http://www.onourradar.org/dementia/2015/08/06/i-wanted-to-talk-about-the-changes-in-my-sleeping-pattern
commun 20-Aug story Alice Sands Mention Their Name http://www.onourradar.org/dementia/2015/08/20/main-thing-is-to-approach-a-person-with-dementia-by-mentioning-their-name
symptms, Dx 20-Aug vid Andrew Garvey Lrng2Liv w/ FTD https://vimeo.com/136838002
Symptms, driving 06-Aug story Anne MacDonald Don’t Wait 2Stop Driving http://www.onourradar.org/dementia/2015/08/06/dont-wait-till-an-accident-to-stop-driving
nutr, 26-Aug story Archie Latta Got to Eat Right http://www.onourradar.org/dementia/2015/08/26/my-brain-has-been-damaged-with-the-korsakoffs
symptms, mobility 19-Jul categ Barry Pankhurst Walking & Traffic http://www.facesofdementia.co.uk/354913517
hygiene, coping, caregiv, 12-Aug vid Barry Pankhurst Personal Hygiene https://vimeo.com/136129044
geog, advocacy 15-Aug proj Barry Pankhurst Proj/TV: Alz Indonesia http://www.facesofdementia.co.uk/332251498
Dx, symptms, Rx, 20-Aug story Bob O’Donnell (Dr) Dx change to MCI but “MILD” ?? & non-profit org http://ftda.cs.unh.edu/journey%20with%20dementia.html
stigma, symptms, prspectv 12-Aug categ Brian LeBlanc vid: stigma https://vimeo.com/136100073
pet, coping 13-Aug vid Brian LeBlanc proj/vid: pet therapy https://www.youtube.com/watch?v=WX7sWgtiFHA
sepratn anx, pets, 17-Aug story Brian LeBlanc 1st Day of School http://abitofbriansbrilliance.com/2015/08/17/the-first-day-of-school-thing/
symptms 20-Aug categ Brian LeBlanc Recogniz Sx https://vimeo.com/album/3464118/video/136847336
driv, indep, freedm, 23-Aug story Cecil Ristow Going Along – or Getting Out https://truthfulkindness.com/index-persons-with-dementia-pwd/cecil-ristow/aug-2015b/
driv, 06-Aug story Chris Forse Dementia & Driving Policies http://www.onourradar.org/dementia/2015/08/06/i-was-extremely-anxious-that-my-licence-would-be-revoked
terms, burdn, relat, commun 02-May pic Chris Roberts Proj/Pic:  not “Burden https://twitter.com/mason4233/status/594424633786503168/photo/1
Dx, risk, CareHm 21-Aug vid Chris Roberts Vid: DAACC2a 2014: & risk https://www.youtube.com/watch?v=K71OeVhI1eQ
Dx, symptms, stigma, advocacy 15-Aug proj Christine Bryden Proj/intrvw: Work of Memory http://www.smh.com.au/good-weekend/christine-brydens-work-of-memory-20150723-giiu0t.html
lit, memoir 26-Aug categ Christine Bryden Bk: Before I Forget http://www.christinebryden.com/books/book-before-i-forget/
Dx, prspectv, coping, hope 28-Aug categ Christine Bryden proj/extract frm bk”B4 I 4get” http://www.debriefdaily.com/health/early-onset-dementia/
Dx, Sx, 31-Aug story Christine Bryden How I Survived Dx https://www.penguin.com.au/products/9780670078745/i-forget-how-i-survived-diagnosis-younger-onset-dementia-46/19343260/extract
symptms, emotns 12-Jul categ Cindy Stolz-Odell Let Swallowing Begin http://www.ftdnoflowers.blogspot.com/2015/07/let-swallowing-begin-please.html
stigma, commun 04-Aug categ Cindy Stolz-Odell Can No One Hear Me http://www.ftdnoflowers.blogspot.com/2015/08/why-can-no-one-hear-me.html
media, SocProbs, $, stigma 13-Aug proj Cindy Stolz-Odell Proj/Published: SSD Comparison http://www.ftdnoflowers.blogspot.com/2015/08/my-tirade-got-published.html
prspectv, Thxgvg, coping 22-Aug categ Cindy Stolz-Odell Feeling Sorry4Self http://www.ftdnoflowers.blogspot.com/2015/08/no-more-feeling-sorry-for-myself.html
symptms, relat, Rx, caregiv 30-Aug story Cindy Stolz-Odell Frustrations http://www.ftdnoflowers.blogspot.com/2015/08/frustrations-every-day-ones-and-one.html
symptms, Dx, stigma 11-Mar story Cynthia A. Guzman Chkn Soup 4 Soul http://blog.alz.org/you-dont-look-like-you-have-alzheimers/
hist 16-Aug proj Daryl Lees Proj/VJ Day: Lest We Forget https://daryl2510.wordpress.com/2015/08/16/lest-we-forget/
late-stage, caregiv, burdn, wrds, relat, fear 12-Aug story David Hilfiker Being a Burden https://www.agingcare.com/Articles/On-Being-a-Burden-186064.htm
sex, symptms, relat 09-Aug vid David Kramer Proj/intrvw: sex & Dementia https://vimeo.com/135801398
resrch, dementia pathology, prspectv 27-Aug story David Kramer Dementia Pathology https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/aug-2015/
craft 04-Aug proj Dianne White Proj: Porch & furniture https://truthfulkindness.com/index-persons-with-dementia-pwd/dianne-white/aug-2015/
emot, wrds, commun, relat, symptms, art 20-May categ George Huba PhD Frustratg w Dementia http://hubaisms.com/2015/05/20/some-of-the-most-frustrating-things-to-deal-with-during-dementia-interactive/
emot, symptms, planng 17-Jun categ George Huba PhD Dementia & Stress http://hubaisms.com/2015/06/17/dementia-and-stress-some-ideas-about-coping-a-mindmap/
planng 05-Aug categ George Huba PhD 2Do B4 Cognitiv Decline http://hubaisms.com/2015/08/05/some-things-you-might-do-before-you-have-cognitivedecline-mindmap/
commun, relat 25-Aug story George Huba PhD “Fine” trap http://hubaisms.com/2015/08/25/the-how-are-you-doing-fine-trap-in-dementia-mindmap/
relat, commun topics 27-Aug proj George Huba PhD Proj/map: to engage PWD http://hubaisms.com/2015/08/27/a-simple-way-to-engage-a-person-with-dementia-pwd-into-understand-mindmapping-as-a-way-to-communicate/
SocProbs, speclists, advocacy, terms 08-Jul categ George Rook Live Well w Dementia ? https://georgerook51.wordpress.com/2015/07/08/can-we-live-well-with-dementia/
flex, routine, travl, Rx, 22-Aug story George Rook Back to Normal https://georgerook51.wordpress.com/2015/08/22/getting-back-to-normal/
symptms 26-Aug story Gill HS Green Headaches & Stuff http://gillhaygreen.com/2015/08/26/dementia-headaches-and-stuff/
prspectv 06-May vid Gina Shaw Vid: Living Well https://www.youtube.com/watch?v=j2kyC39AHWM
perspctv, projects 04-Aug proj Gord Settle Proj/Tractr hitch w pics https://truthfulkindness.com/index-persons-with-dementia-pwd/gord-settle/aug-2015/
hope, Rx, stats 10-Aug story Greg O’Brien Waking Dream http://www.huffingtonpost.com/greg-obrien/a-waking-dream_b_7735476.html
$, geneology, sex, 17-Aug proj Greg O’Brien Proj/Judy Fund http://www.huffingtonpost.com/greg-obrien/the-judy-fund-fighting-to_b_7988328.html
prspectv, enviro, advocacy, anger, coping 06-Aug story Harry Urban It is what it is https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/aug-2015a/
commun, prspectv, 14-Aug proj Harry Urban Proj/list:  “Do” and “Don’t” https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/do-dont-dementia/
ID, prspectv, symptms, recogn, craftg 22-Aug categ Harry Urban August Part B https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/aug-2015b/
schedule 31-Aug proj Helga Rohra Proj/calendar http://helgarohra.com/NEWS/Artikel/
autobiogr 16-Aug vid Jennifer Bute Proj/vid: LifeBook https://vimeo.com/album/3464118/video/136427082
music 05-Jul proj John Mann proj/concert w Vanc Musician & Actor w EOA http://www.cbc.ca/player/Shows/Shows/Absolutely+Canadian/Absolutely+Vancouver/ID/2671058092/
driving, symptms 19-Aug story John Quinn It’s Okay https://iamlivingwellwithdementia.wordpress.com/2015/08/19/in-the-end-its-okay/
fundraisg, Dx 24-Aug categ John Quinn Support for YOD https://iamlivingwellwithdementia.wordpress.com/2015/08/24/support-for-younger-onset-dementia/
media, art, confidence 19-Aug story John Williams Sky News http://www.onourradar.org/dementia/2015/08/19/i-was-totally-amazed-to-find-my-voice-and-some-pictures-of-me-on-sky-news-last-friday
art, symptms 26-Aug proj John Williams Proj/intrvw: Alz Doesn’t Slo Art http://www.onourradar.org/dementia/2015/08/26/my-alzheimers-doesnt-slow-my-art-down
Dx, symptms, paintg 29-Jul vid Kathleen Anduze Proj/vid/art: Revisn of Artistic Style https://vimeo.com/134843730
self, rights, psych 12-Aug categ Keith E. Oliver Selfhood http://www.onourradar.org/dementia/2015/08/12/one-should-never-be-written-off
symtms, Dx 21-Aug categ Keith E. Oliver Symptms & Solutns http://www.onourradar.org/dementia/2015/08/21/2859
resrch, Dx, risk factrs 26-Aug story Keith E. Oliver Risk Factors http://www.onourradar.org/dementia/2015/08/26/all-of-the-normal-triggers-for-alzheimers-dont-apply-to-my-case
photo, fam 15-Aug proj Ken Clasper Proj/photos: Killope Mine http://ken2clasper.blogspot.com/2015/08/lovely-day-at-killope-mine.html
stress, Dx 19-Aug categ Ken Clasper Diagnosis & Stress http://ken2clasper.blogspot.com/2015/08/diagnosis-and-stress.html?spref=fb
stigma, commun 20-Aug categ Ken Clasper Silly Remarks http://www.ken2clasper.blogspot.com/2015/08/people-laugh-at-silly-remarks.html
transportatn, cust srv, “d-frndly” 22-Aug story Ken Clasper Barnard Castle http://www.ken2clasper.blogspot.com/2015/08/barnard-castle.html
symptms, night, terrors 25-Aug categ Ken Clasper Graphic Nightmares http://www.ken2clasper.blogspot.com/2015/08/graphic-nightmares.html
Dx, symptms, career 09-Aug proj Kenneth Martinez Proj/intrvw: Retired Judge http://www.abqjournal.com/625625/news/time-stealer.html
Dx, media, advocacy 21-Jul proj Kris Bakowski Proj/intrvw: AtlanaMag http://www.atlantamagazine.com/health/still-alzheimers-a-roundtable-discussion-on-the-disease/
exrcs, emot, hlth 05-Aug vid Laurie Scherrer Proj/vid: Import of Exercise https://vimeo.com/135488948
symptms, travl, planng, coping stratgy, cookg) 11-Aug proj Laurie Scherrer Proj/intrvw: TogethrInThis http://togetherinthis.com/living-positively-with-dementia-daze-laurie-scherrer/
Dx, symptms 30-Aug story Mary Beth Wighton FTD Awareness https://uwaterloo.ca/murray-alzheimer-research-and-education-program/blog/post/world-ftd-awareness-week
poem, emot, hosp 17-Jan proj Melanie Wagner Proj/poem: Alone https://mwagner21.wordpress.com/2015/01/17/alone/
poem, disAbilities 20-Apr story Melanie Wagner Food for Thought https://mwagner21.wordpress.com/2015/04/20/food-for-thought/
exrcs, enrgy, struggl 12-Aug story Melvyn Brooks Just Exhausted http://www.onourradar.org/dementia/2015/08/12/im-just-exhausted-and-its-a-horrible-feeling
Dx, Rx, terms, MCI 31-Jul categ Michael Ellenbogen Proj/intrvw/vid: Dire Dx https://www.youtube.com/watch?v=QQNVwWM3u_8
advocacy, socProbs, emot, 05-Aug vid Michael Ellenbogen Proj/intrvw/vid: Over the Top https://www.youtube.com/watch?v=iEbvbysVON4
$, cure, SocProbs 11-Aug categ Michael Ellenbogen Proj/intrvw/vid: Future is now https://www.youtube.com/watch?v=RuuWfegxOFM&feature=em-share_video_user
resrch 24-Aug story Michael Ellenbogen Recommendatns re trial Engagement http://www.pharmaphorum.com/articles/patient-recommendations-to-enhance-dementia-trial-engagement#.Vds30_paqJ4.mailto
attitude, relat 10-Aug categ Mick Carmody Four am http://carmodym59.com/2015/08/11/four-am/
gratitude, emot, 11-Aug proj Mick Carmody Proj/prose: Eventful & Fruitful http://carmodym59.com/2015/08/11/eventfull-and-fruitfull/
busy, prspectv 11-Aug categ Mick Carmody Four am http://carmodym59.com/2015/08/11/four-am/
advocacy, relat 15-Aug story Mick Carmody Collaboration http://carmodym59.com/2015/08/15/collaboration/
Dx, symptms, 2014 ?? categ Multi: Dr David Hilfiker, Rick Phelps, & Jean DelCampo Proj/intrvw: Fade2Blank pt1 http://www.fadetoblank.org/#/?part=cause-for-concern
Dx, symptms 19-Aug proj Multi: Karen Francis & Tina Nichols Proj/intrvw: TBI (Traumatic Brain Injury) https://vimeo.com/136781123
sleep, symptms, night 11-Aug categ Multi: Michael Ellenbogen, Truthful Kindness, Harry Urban Proj/intrvw: D Chats: Night issues https://alzheimersspeaks.wordpress.com/2015/08/11/sleep-issues-aug-11th-2015-dementia-chats-recorded-webinar/
Dx, MCI term, Farms 09-Jun proj Multi: Paulan Gordon, Robert Bowles, Harry Urban Proj/intrvw/D Chats: MCI term, Farms (w/Harry & Paulan) https://alzheimersspeaks.wordpress.com/2015/06/09/recorded-dementia-chats-dementia-farms-changing-terminology/
wrds, media, stigma 17-Aug proj Multi: Tommy Dunne, Agnes Houston,Keith Oliver, Gina Shaw, Anne MacDonald Proj/intrvw: Not a Victim https://www.journalism.co.uk/news/-i-am-not-a-victim-tips-for-reporting-on-dementia-/s2/a566136/
prspectv, symptms, caregivrs 06-Aug proj Myrna Norman Proj/Prose:  Step in my Shoes https://truthfulkindness.com/index-persons-with-dementia-pwd/myrna-norman/aug-2015/
symptms, Dx, 27-Jul categ Norman Mc Namara Vid: msg https://www.youtube.com/watch?v=-vBgVE9Svr0
symptms, Dx, 01-Aug vid Norman Mc Namara Proj/vid: Losing (PWD) friends https://vimeo.com/135138428
emot 14-Aug story Norman Mc Namara Somethings Broken http://tdaa.co.uk/dementia-feels-like-somethings-broken/
music, media 24-Aug categ Norman Mc Namara Proj/MP3 Write-Up http://tdaa.co.uk/dementia-mp3s-telegraph-write-up-plz-rt/
media, music 16-Feb vid Paul Hitchmough Proj/vid/song: Wanna Dance https://www.youtube.com/watch?v=LFjqTM4yU_I
terms, suffrg, emot 19-Aug story Paul Hitchmough “Suffering” http://www.onourradar.org/dementia/2015/08/19/people-cant-seem-to-say-what-they-think
football 24-Aug proj Phillip Watmough Proj/Football http://www.onourradar.org/dementia/2015/08/24/rushing-around-with-the-football-and-its-been-absolutely-great
emot, symptms, Rx 08-Jul categ Rick Phelps Dementia & Feelings http://phelps2645.blogspot.com/2015/07/dementia-and-feelings.html
volunteerg, srch/rescu 15-Jul vid Rick Phelps Proj/vid/drone: Srch & Rescu https://www.youtube.com/watch?v=nnplbKaPWeM
time, chng, prspectv 10-Aug story Rick Phelps While I Still Can http://phelps2645.blogspot.com/2015/08/while-i-still-can-rick-phelps-quote.html
driv, plan 31-Aug categ Rick Phelps Dementia & Driving http://phelps2645.blogspot.com/2015/08/dementia-and-driving.html
driving, planng 10-Aug story Robert Bowles Driving http://lbdlivingbeyonddiagnosis.com/2/post/2015/08/driving-a-vehicle-involves-more-than-memory.html
symptms, paintg 27-Aug story Robert Wright Finding Twenty https://findingtwenty.wordpress.com/2015/08/27/finding-twenty/
autobiogr 01-Aug story Russell Scott Unplanned http://rustyhiggins2014.com/2015/08/01/unplanned-love/
driving 29-Jun proj Sandy Halperin proj/intrvw: Driving w Early Stage http://www.cnn.com/videos/tv/2015/06/29/sandys-story-driving.cnn/video/playlists/all-about-alzheimers/
symptms, Dx, Media, ID 06-Mar story Sandy Oltz Hall Still Sandy http://www.huffingtonpost.com/sandy-oltz/still-sandy_b_6763598.html
relat, fam, loneli, funerl 10-Jul categ Silverfox Visiting Angels http://parkblog-silverfox.blogspot.com/2015/07/visiting-angels.html
dreams, night, emot, terror 10-Aug story Silverfox Dreams out of Control http://parkblog-silverfox.blogspot.com/2015/08/dreams-out-of-control.html
autonomic dysFunctn, LBD, 11-Aug categ Silverfox BP Slamming http://parkblog-silverfox.blogspot.com/2015/08/my-bp-is-slamming-into-limit-stops.html
Dx, CTE, advocacy 06-Aug story Steven A Barbieri Why Walk http://www.alzheimersblog.org/2015/08/06/personal-notewhy-walk-steve-barbieri/
caregiv, 12-Aug story Tommy Dunne A Carer http://www.onourradar.org/dementia/2015/08/12/being-a-family-carer-for-someone-with-dementia-can-be-one-of-the-longest-and-loneliest-experiences-you-will-ever-have
symptms, coping strategy, 11-Aug categ Truthful Kindness Sound DisOrientation https://truthfulkindness.com/2015/08/11/sound-disorientation-dementia-symptom/
emot, grief, symptms, advocacy 18-Aug story Truthful Kindness Path thru Loss 2 Advocacy https://truthfulkindness.com/2015/08/18/loss-grief-choices-dementia-advocacy/
music 25-Aug categ Truthful Kindness Proj/Music is Connection https://truthfulkindness.com/2015/08/25/music-is-connection-dementia-symptoms/
Dx, MCI, SocProbs, SocSrvs, $ 27-Aug Proj Truthful Kindness proj/Voices w Dementia http://thecaregiversvoice.com/voices-with-dementia/what-the-change-in-diagnosis-from-dementia-to-mci-means/
$, driving, music 25-Aug proj Valerie Blumenthal proj/intrvw: Oxford Times http://www.oxfordtimes.co.uk/news/headlines/13625503.Best_selling_writer_Valerie_Blumenthal_faces_up_to_getting_Alzheimers_in_her_50s/
Dx, symptms, PCA, 2015 story Valerie Blumenthal Valerie’s Story http://www.youngdementiauk.org/valeries-story
symptms, Dx, coping, resrch, Rx, advocacy 17-Aug story Wendy Mitchell Memory to Let Me Down http://www.telegraph.co.uk/lifestyle/11800724/My-memory-started-to-let-me-down.html

Blog & webpage links is the last entry in newsletter at https://truthfulkindness.com/links/


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