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Posterior Cortical Atrophy (PCA)
Edalynne
Posted: Monday, February 11, 2019 1:13 PM
Joined: 8/21/2018
Posts: 2


Does anyone have any experience with Posterior Cortical atrophy (PCA)?  I just ran across it in my research and the symptoms seem really consistent with the ones my husband is experiencing. I've devoured everything I could find to read about it online. There wasn't too much. Has anyone dealt with this or have additional resources on it? Thank you!
Andy61
Posted: Monday, February 11, 2019 4:04 PM
Joined: 12/17/2018
Posts: 68


Here is a link for a very detailed 10 pages of description of each stage in PCA

 http://www.raredementiasupport.org/wp-content/uploads/2018/09/stages-of-pca.pdf


Mimi S.
Posted: Monday, February 11, 2019 5:39 PM
Joined: 11/29/2011
Posts: 7035


Dear Edalynne. Welcome to our world. I'm so glad you found our site.

"Although PCA is almost always caused by Alzheimer’s disease, it can result from other diseases including dementia with Lewy bodies and Creutzfeldt-Jakob disease. PCA is thought to affect less than 5% of people with Alzheimer’s disease, although epidemiological studies are lacking and PCA has been under-recognized in the past. "is your husband being seen by a neurologist whose practice is mainly dementia?  Wht was the process of  diagnosis? Did he have brain scan/s and a several hour long neuro-psych testa/

Do bring your thought to that professional.And let us know.


Jo C.
Posted: Wednesday, February 13, 2019 12:55 AM
Joined: 12/9/2011
Posts: 10197


Hello Edalynne, I do recall that we have had Members whose Loved Ones had PCA; they were most often on the Spousal Forum.   You may want to go up to the top where the purple link is, "Message Boards," and click on the Spousal Forum and put a message there.

J.


alz+
Posted: Wednesday, February 13, 2019 8:15 AM
Joined: 9/12/2013
Posts: 3549


what a great link that was shared.

I like how people are asking patients what they know in addition to caregivers and medical experts.


Canada111
Posted: Thursday, February 14, 2019 11:45 PM
Joined: 8/22/2016
Posts: 262


I recommend you and your husband get in touch with Cecil Ristow who has Posterior Cortical Atrophy. He can be found on Facebook https://www.facebook.com/cecil.ristow

From his blog-

Sincerely Cecil

616 Stories CecilR pic color 20140926a 1in200ppi

Dementia Success Stories:
“How we made a difference for self and those around us AFTER diagnosis”

A dementia brain-storming project by participants of PWD Perspective newsletter
Compiled and edited by Truthful L. Kindness (yes it is legal name)

  1. Sincerely Cecil
  2. Previous/current occupation(s?): …Military Police Law Enforcement Supervisor USAF Ret.   Special Education Teacher/ High School and Night Hospice Nurse 17 years each
  3.  Nation, & state if desired: …Washington State USA
  4.  Age at tentative diagnosis: …57
  5.  Year of diagnosis: …2012
  6.  How long for definitive diagnosis: …4years
  7.  Type of dementia: …. Posterior Cortical Atrophy
  8.  Since diagnosis, what one or more action, success, or accomplishment do you take pride in? Adjusting to Impred vision, Re-teaching personal skills to include personal care, household tasks, quilting, crochet and calligraphy.
  9.  What do you wish your primary Physician knew about dementia? … about you? …” I have dementia but dementia doesn’t have me. ” Quote from my friend Jan W. who is also a PCA sufferer. I have found that I can still do things, but I have to do them differently and finding new ways can take a while!
  10. What do you wish your specialist Physician knew about dementia? … about you? … I have my reasoning, I have my judgment it’s just up, down, right left, inside, outside and hot and cold that are all messed up.
  11. What do you wish your family knew about dementia? … about you?… I’m still me, and I remember everything – even though I lose my speech, my vision and my ability follow quantities and numbers or do things safely, it doesn’t mean I’m not here anymore. The thing is they don’t know how much time I’ve got left but their best guess is about a few more years. I’d just as soon not waste them.
  12. Date (2015 March 8)

Cecil: “We all have become medicine for each other …
I … like to help people grasping at straws
’cause I got a wide collection of the best ones that work really good”

per Cecil.