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posterior cortical atorphy
alz+
Posted: Saturday, January 25, 2014 6:42 AM
Joined: 9/12/2013
Posts: 3608


5% (probably more) patients diagnosed with Alzheimer's have PCA or  posterior cortical atrophy.

One of the first signs with PCA is that the person seeks advice abouts double vision or blurred vision or eye wandering. The eye exam comes back clear but doctor suggest brain scan for tumor or other.

 

this happened to me. Years before I had mild impairment but was easily managed - my life is very quiet, see few people, live in small village in woods.

 

Sent to neurologist and was told Alzheimer (yes have taken bi-annual 4 hour exams for memory as part of clinical research on Alz and was called after being diagnosed to say big time drop in abilities and increase in difficulty at last exam. Also family tradition to have Alzheimer's).

 

So, no one knew what the vision deal was, and because I am still  VERBAL

some assume I am pretending (and some have one hand on a phone to call police about disheveled older woman in lobby who seems lost - i.e. drunk, insane, or a free ranging dementia patient).

 

PCA explains the situation. I emailed the Lancet article to my doctor (she has email for this kind of stuff!) and she read it and is sharing it with the research people. This is offered as potential help to someone who can talk a good game yet but inside knows the brain is misfiring and "is not normal".

 

A PET scan may prove this to be true or I can skip the scan and just say to deniers, "I'm sorry I can still talk. It's because I have the rare PCA version of Alzheimer's. I can lose things for you though if you think it might help you understand there is a malfunction."

 

ok, this is an example of what I suspect is a reason to be off boards. It is all true, but no one is looking for quips about having ALZ.

 

  inappropriate?

 

 

 

 

 

 


alz+
Posted: Monday, February 3, 2014 10:07 PM
Joined: 9/12/2013
Posts: 3608


visual disturbances - left eye again is blurred and missing portions.

 also vertigo - but I swam today anyway and walked dog several times in deep snow.

 

Seizures are also part of PCA and I do not KNOW I have this, but was offering info for people wondering about symptoms with vision or muscle problems. I suspect falling or instability may some times be visual distortions.

 

anyway, hard to type now with one eye so...

love to all! be a rebel!


nomemo
Posted: Tuesday, February 4, 2014 11:02 AM
Joined: 3/21/2012
Posts: 439


i've also had visual disturbances.  last year, around memorial day, i think, it seemed that the top half of my left eye was totally white....as white as snow, while i could see out of the bottom half.  this lasted less than 5 minutes.  when i went to my regularly scheduled appointment with the eye dr. in august last year, i reported it to her.  she said that if it happens again i'm to get in THAT DAY to be examined to see if my retina is becoming attached or if there are signs of stroke or another neurological problem. 

 

well, it did happen again, on labor day, only this time it was in the inside top corner of the left eye and seemed as though the picture were "scrambled" or very "puzzle-like" pieces.  also didn't last long.  and, of course, being a holiday, the dr. office was closed.  i went in to see her this past january and reported it again.  and, again, she stressed the importance of getting in there a.s.a.p. because the longer i wait the signs will disappear.  she also said it could be symptomatic of "ocular migraines".  i do have headache 24/7 that go right above my eyebrows due to  my frontotemporal dementia.  i'm not a dr. but the idea of "ocular migraine" sounds logical to me; however, i don't remember if my headaches had been worse on these 2 occurances of visual disturbances. 

 

if it does happen again to me, i will do my utmost to get in to see her on the same day!


nomemo
Posted: Tuesday, February 4, 2014 11:04 AM
Joined: 3/21/2012
Posts: 439


sorry....i meant to say to see if my retina was becoming "detached".......
alz+
Posted: Thursday, February 6, 2014 11:20 AM
Joined: 9/12/2013
Posts: 3608


I have recurrent blank white sections, complete eye exam by 2 eye specialists, both said eyes fine, brain not reading visual info properly.

 

double vision and blurred vision part of PCA Alzheimer's but not making a diagnosis. Just there are signs one would not think of that occur PRE dementia/Memory signs.

 

Memory loss is NOT the first sign of dementia according to Mark Sagar MD from Univ Wis Alz research project. I was part of that, signs of anxiety and feeling lost were differnet than ordinary anxieties. I remember that, now can see out of left eye most of day, but it is regular enough to not drive anymore.

 

guess lots of causes for eye disturbances.


Iris L.
Posted: Thursday, February 6, 2014 2:25 PM
Joined: 12/15/2011
Posts: 18362


alz+ wrote:

 

Memory loss is NOT the first sign of dementia according to Mark Sagar MD from Univ Wis Alz research project. I was part of that, signs of anxiety and feeling lost were differnet than ordinary anxieties.


This is interesting.  My first dx was depression/anxiety.  Do you have a website for this group or doctor? 

Iris L.


Myriam
Posted: Thursday, February 6, 2014 4:28 PM
Joined: 12/6/2011
Posts: 3326


Here's the information on Dr. Sagar and other doctors in the Memory Assessment Clinic at UW:

http://www.uwhealth.org/locations/clinic_detail.jsp?sublocationId=377


Iris L.
Posted: Thursday, February 6, 2014 6:34 PM
Joined: 12/15/2011
Posts: 18362


Thanks for the link, Myriam.  I didn't find anything about research in anxiety/depression.  After I thought about it, I believe the anxiety I experienced was due to my early memory loss.

Iris L.

alz+
Posted: Monday, February 9, 2015 8:27 PM
Joined: 9/12/2013
Posts: 3608


Hey - I am in desert still, walked today for first time in weeks, able to swim a little, but still kind of laid out from ??? maybe post latest shingles episode.

While in emergency room recently the question of PCA came up...then my husband remembered the neurologist who diagnosed me in 2013 said he suspected PCA. I don't remember that, and do not remember starting this post. I search for PCA and came up with this!

But maybe - if there is a good Alz doctor near by - I could get a scan because new troubles are strange enough to want to know.

One was how often I am looking for something and it is where I was looking - but the object is missing my from vision! The other event was walking into bedroom to undress and put on swimsuit and then had urge to pee which immediately became a combo event of slipping off one shoe, wetting pants while unzipping, and sliding tumbling towards cement floor. All actions converged into one. Holy wah
!

I got to be with my grand children - a total wonderful experience, and I am well enough to spend the coming weekend with them at their house. My son and daughter have a much better idea of what kind of help I need. I am off all pharmaceutical drugs, using MM for insomnia, focus, mood change.

Anyone have new info on PCA? Is it some special scan that insurance does not cover? Is there a different decline scenario?

Vision problems so severe I have to ride in BACK SEAT of car and look at my lap to endure it.

Thanks to everyone for being here when you could and to those who remain. Valentine to all!

love and courage


llee08032
Posted: Tuesday, February 10, 2015 7:19 AM
Joined: 5/20/2014
Posts: 4408


alz+

First time hearing about PCA this week. I just had normal eye exam but persist with blurry vision, seeing things,visula disturbances, not seeing things right under my nose, perceptual difficulties etc. I have a twitching in my left eye all week. You need to get in to Dr and exam when you get back home.

Enjoy your family and every moment with those precious grandchildren. Let your family spoil and love you and be understanding as to what your needs are. They know and love you best.






Iris L.
Posted: Tuesday, February 10, 2015 12:15 PM
Joined: 12/15/2011
Posts: 18362


I have absolutely no recollection of this thread, and I posted on it last week!

Anyway, I found a PCA online support group, in the UK. It is probably a good idea for all of us to pay attention to possible visual distortions,

Posterior Cortical Atrophy Support Group Website

Welcome to the Posterior Cortical Atrophy (PCA) Support Group website. This site aims to provide information and support to people with PCA, and their families, friends and healthcare professionals.

http://www.ucl.ac.uk/drc/pcasupport

Alz+, are you trying to convice people about your diagnosis?

I received the best advice about illness over 20 years ago, when I was first diagnosed as having systemic lupus. That was from our support group leader and founder. She said, "Accommodate your illness."

This means making whatever changes are necessary to give you a fulfilling, functional life. A change can be something on the order of putting up boundaries against the slings and arrows that attack us. We do not have to be sitting ducks for other people's venom or ignorance.

Iris L.


alz+
Posted: Wednesday, February 11, 2015 11:29 AM
Joined: 9/12/2013
Posts: 3608


Iris!

I am not sure about what you asked - but I am surprised that my husband, friends (few left), people I encounter seem to think I am much more capable than I feel. It scares me.

Because I talk, or write, my family says "Take care of your self!" What does that mean?

About the PCA - I would like to know if there is different decline than Alzheimer's because my loss of vision causes me great anxiety. I am in constant state of distress looking through this little tunnel, things blurred, trying to move about at night, to get to bath room - all feels very treacherous to me.

Who would I try to convince? I am used to doctors doubts and challenges. Maybe because I once was labeled with mental illness and everything that hurt me became "an aspect of her mental problems" I just got used to making my way on my own.

If you hear some thing that would clear up my anxiety about...when I can no longer speak for myself...please advise me. I hang on your words and your perceptions as mine have become distorted.

A scan I thought would say "Oh see this little section is shrunk, that is why you can not see, why you are scared." and I wondered if that helps people, or would help me adjust to new losses.

no matter what I try the BOLD does not work.

Iris L.
Posted: Wednesday, February 11, 2015 3:51 PM
Joined: 12/15/2011
Posts: 18362


Alz+, I can only use BOLD on Google Chrome, not on Internet Explorer. But I must BOLD paragraph by paragraph.

I was wondering if you are using up valuable energy in "convincing" people of your reality. If so, why?

At this time in our lives, we must live by a new paradigm of dementia and cognitive impairment. For me, this means to FOCUS my attention on what is MOST MEANINGFUL to me, and go for it!

Let everything else go. We must live on a HIGH LEVEL of SERENITY.

We do not have time or energy to argue or dispute with people who do not know what we are talking about, anyway.

I have given up communicating with doctors, and I am a doctor myself. I just go in to get my medications.

Much anxiety in our lives is due to being in situations that are over our comfort levels. We need to pay attention to our comfort levels, and stay in that level. People, by human nature, will try to push us out of our comfort level. We have to BLOCK that!

You might look into accommodations for low vision people.

Enjoy the desert and the grandchildren.

Iris L.

alz+
Posted: Thursday, February 12, 2015 10:46 AM
Joined: 9/12/2013
Posts: 3608


Iris, thank you again (so many agains!)

Note the first post on this topic is 2013 - I was looking for information and was led to my own first postings!

Another person wrote me concerned I was over dosing on MM and sent me info on PCA which I will enter next. People are so kind! and it is good to question everything.

Like you I pulled back from people who would discount the diagnosis, minimize, or plain out tell me I am just an anxious person, imagining things.

As this has progressed and become more limiting for me to be out in the world I have expounded on a safe happy home as being the basic cure for that. But the muscle tension appears to be some systemic contraction, even my intestines are stiffening, my chest muscles. So I wonder - is this something different that if I knew what it was could be treated?

anyway - as to over dosing on MM - no. My use is 1 or 2 puffs in morning if needed (I can not get out of bed, frozen, extreme inertia) and around bed time again 1 or 2 puffs to help me go to sleep.

But yes some strains of the new MM are very strong but not what I use.
Indica puts me to sleep,
Sativa light weight helps my body walk, swim, or post to boards, send emails, some times still can pay a bill online, maybe more than once but it does help and I never feel stoned. The vision loss is not in my eyes ( 2 ophthalmologists checked the mri and my eyes and said problems in my brain, eyes are good.

thank you to all who show your concern and think outside the box.


love and courage

alz+
Posted: Thursday, February 12, 2015 10:54 AM
Joined: 9/12/2013
Posts: 3608


PCA from UK website symptoms:

Symptoms

The most common problem first noticed by individuals with posterior cortical atrophy is with vision. Quite understandably, this leads many people to consult their optician, but in fact the visual problems experienced are not related to the eye. Rather, the problems stem from the difficulty the affected brain has with interpreting the information sent to it by the healthy eyes. The precise nature of the visual problems experienced may vary widely but often include difficulty with some or all of the following:

  • recognising objects in pictures (for example household items in a catalogue, especially if the pictures were taken from obscure angles or the picture is incomplete)
  • recognising faces (for example TV characters, friends, relatives)
  • appreciating the spatial location of objects around them (for example missing when reaching out to pick something up, finding it hard to press the correct numbers on a telephone, not seeing something you are looking for when it is right in front of you)
  • judging distances (for example when driving, when descending stairs).
  • judging the speed of moving traffic
  • perceiving movement among things which are stationary
  • following the text when trying to read a book or newspaper, causing one to miss some lines of text or to read others twice
  • reading particular words, finding that letters appear to move around or become superimposed over one another
  • reading certain types of text (for example large print such as newspaper headlines, handwritten notes)
  • experiencing objects as having an unusual colour
  • experiencing increased sensitivity to bright light or shiny surfaces
  • seeing clearly, experiencing double vision
  • seeing clearly, feeling that one eyes are jerking around or not completely under one’s control.

However, vision is not the primary or only area of difficulty for everyone with posterior cortical atrophy. Skills such as literacy, numeracy, and the ability to make skilled movements may also be affected. Such difficulties may be experienced in the following ways:

  • problems recalling the exact spelling of words
  • difficulties with handwriting
  • difficulties with remembering the shape or name of particular letters or numbers
  • slowness and difficulty with mental arithmetic
  • problems dealing with money and small change
  • awkwardness making gestures (e.g. waving, thumbs up)
  • difficulties with using particular tools, kitchenware or implements (e.g. cutlery, scissors, glasses)
  • problems with dressing and clothing (partly related to difficulties with visual perception).

Posterior cortical atrophy can affect people in different ways initially. In some instances, the disease affects both sides of the brain equally, leading to a combination of many of the symptoms described above. For other people, the disease affects one particular brain area earlier or more significantly; as a result, problems with spelling and writing for example might be the first sign of the condition with vision relatively unaffected, whereas as for others, difficulties in seeing where objects are might be the initial symptom.

....................................................................................................................................


these are almost totally my basic symptoms, don't know if I will pursue tests for it. Would there be any point other than curiosity?

thank you to private messenger who sent me that link and for all those who tell me to find calm. How easy it is to forget to calm down. Have not smiled in a number of days until last night watched public TV on odd animal companions, when I smiled it felt like my face was in a clay mask, took some time to soften. Odd.



Iris L.
Posted: Thursday, February 12, 2015 11:51 AM
Joined: 12/15/2011
Posts: 18362


alz+ wrote:
Note the first post on this topic is 2013 - I was looking for information and was led to my own first postings!


As this has progressed and become more limiting for me to be out in the world I have expounded on a safe happy home as being the basic cure for that. But the muscle tension appears to be some systemic contraction, even my intestines are stiffening, my chest muscles. So I wonder - is this something different that if I knew what it was could be treated?

Hi, Alz+. I thought I remembered an older thread on PCA! I am glad you confirmed that.
As far as the muscle tension goes, chest stiffening and intestines stiffening--this could all be the physical manifestations of tension and anxiety, We have voluntary muscles that make us move and involuntary muscles that control breathing and digestion. Both can be affected by anxiety.
When our breathing is shallow, we have chest pain. This can almost seem like a heart attack. I used to have this type of chest pain.
An LCSW gave me the treatment, which I still make use of. It is simple, but effective. The remedy to anxiety induced muscle tension is DEEP BREATHING.
I breathe in to a count of 4, then breathe out to a count of 4. When very stressed I purse my lips to exhale. Surprisingly, this works.
Some people may have to breathe into a paper bag for a few moments to get relief.
Deep breathing also helps me with my persistent insomnia. I am getting to sleep better.
I agree, a safe happy home life is one of the treatments for people like us.
Here's to peace, calmness and serenity, Alz+!
Iris L.

alz+
Posted: Thursday, February 12, 2015 8:07 PM
Joined: 9/12/2013
Posts: 3608


Iris and every one - about Muscle stiffness, rigidity. Anxiety would be the first thing we think of and deep breathing can release a lot tension. However this is definitely more than emotional tension.

I have the shuffling gait already and I recall from massaging my Dad throughout his illness that his ankles were stiff, as mine are. My lungs are scarred from an old pneumonia and deep breaths induce coughing.

enough about me - here is some info on the phsyical aspects of Alz.

http://umm.edu/health/medical/altmed/condition/alzheimers-disease


Signs and Symptoms

The early symptoms of Alzheimer's disease can be missed because people may think they are due to "natural aging." The following are the most common signs and symptoms of Alzheimer's:

Psychological Symptoms

  • Memory loss that gets worse, starting with forgetting recent events and new information, progressing to not recognizing friends and family members
  • Having a hard time concentrating
  • Having a hard time understanding words, completing sentences, or finding the right words
  • Getting lost in familiar places
  • Restlessness
  • Depression
  • Aggression, agitation, anxiety, restlessness
  • Distrusting others
  • Withdrawal, disinterest, hostility, loss of inhibitions

Physical Symptoms

  • Problems with movement or coordination
  • Muscle stiffness, shuffling or dragging feet while walking
  • Insomnia or change in sleep patterns
  • Weight loss
  • Incontinence
  • Muscle twitching or seizures
.............................................................................
The emphasis for most patients is on memory loss to the exclusion of a physical reality...

Iris L.
Posted: Thursday, February 12, 2015 11:59 PM
Joined: 12/15/2011
Posts: 18362


Iris and every one - about Muscle stiffness, rigidity. Anxiety would be the first thing we think of and deep breathing can release a lot tension. However this is definitely more than emotional tension.

I have the shuffling gait already and I recall from massaging my Dad throughout his illness that his ankles were stiff, as mine are. My lungs are scarred from an old pneumonia and deep breaths induce coughing.



Yes, there are many physical changes that may be associated with Alzheimer's Disease. That's why it is a good idea to consult with a competent medical professional for medical issues.

I was not trying to diagnose over the internet. I merely wanted to share what I had learned about handling anxiety.

Iris L.

Iris L.
Posted: Friday, February 13, 2015 12:20 AM
Joined: 12/15/2011
Posts: 18362


alz+ wrote:



As this has progressed and become more limiting for me to be out in the world I have expounded on a safe happy home as being the basic cure for that. But the muscle tension appears to be some systemic contraction, even my intestines are stiffening, my chest muscles. So I wonder - is this something different that if I knew what it was could be treated?

Perhaps I misunderstood your question.

Iris L.

alz+
Posted: Friday, February 13, 2015 12:45 PM
Joined: 9/12/2013
Posts: 3608


Iris - I don't know what my question was!

I guess it was that you have such clarity and pick up on things, make things make sense. And as a doctor yourself you have a balanced and scientific mind.

Thinking now I do wonder - when something goes off, wrong, or changes "Is this more ALZ progression?" I feel like my ability to understand is eroding.

The tension while traveling in car - if I had not been able to use internet, the boards, and know this is NOT how my heart feels, this is NOT how I want to be...would anyone have figured out I could ride in back seat head down and avoid these long periods of crippling distress?

I am working with relaxation of muscles, hand, wrist, forearm, elbow, and so on. My husband has been massaging my hands and feet. I can use the Ativan if it gets unbearable. I have a hot swimming pool with natural mineral spring water to soak and swim in...and yet it is like my body has been taken over.

Your common sense and insight has helped me through some very bad spots. How would you know how much your words and take on things helps all the people reading your posts?
Just being this calm presence is a huge help.

Watched Unusual Inter Species Friendships on Public tv the other night. Great show, made me smile. I thought it strange they never mentioned that our human relationships with dogs, cats, horses, chickens, birds, elephants, oxen and on and on are Inter Species friendships!

Some times it is so hard to see myself with a rational perspective, more so lately. If I can not use computer soon for any reason, remember how important you are to so many. I feel great love for all my internet friends here.

Thanks to all of you. It has become a different journey for me lately, whether or not I can make a come back remains to be seen. Share with each other!



Iris L.
Posted: Friday, February 13, 2015 3:46 PM
Joined: 12/15/2011
Posts: 18362


alz+ wrote:
Iris - I don't know what my question was!


LOL! This happens to me, too!

I think we can get too caught up in every little occurrence, and wonder what does this mean? Why am I doing this? Is this progression?
Sometimes, we just have to chill. We have to let things flow over us, because our lives have changed, and we cannot react to everything.
We have to be conscious of our needs and make sure we get them.
I am glad you are making use of the warm water pool. A warm water pool did me a world of good.
I also saw the last part of that show about the animal friendships. I had seen it before. It was wonderful, was it not?
I posted a very nice video on the I Have AD board on the OT--To Lift Our Spirits thread about a dog. I hope you get a chance to watch it. I do believe it will lift your spirits!
I think it is so important, and even VITAL, for us patients to have other patients to communicate with to offer information and support. The outside world has little for us. We are pioneers on this journey.
We are dementia pioneers. I like that. I truly believe that dementia will be a different disease in people like us who are aware and who take charge and think outside the box and do what we can to make our lives better.
Perhaps, in the future, if there is interest, we can get the chat room working for us. We will see.
This board is behaving so strangely. Every day it is something different. Now I have BOLD although I did not click on the BOLD button. But I have these lines.
Keep calm and carry on. I have been reading that lately. That is my advice to you today, Alz+. Stay well.
Iris L.





alz+
Posted: Friday, February 13, 2015 4:30 PM
Joined: 9/12/2013
Posts: 3608


I needed that advice...as usual. Hyper aware of small changes.

Hyper Vigilance.

The father of my children has problems from AFIB and heart valve replacement, blind in one eye and anxiety issues, difficult for him to go to a store and so on.

He wrote me last week
"I can't go on. I go on."

makes me cry, it hits the right note.

Iris L.
Posted: Friday, February 13, 2015 4:59 PM
Joined: 12/15/2011
Posts: 18362


alz+ wrote:


Hyper Vigilance.




Hypervigilance. This is the word I was trying to come up with, that means hyper awareness. Thanks, Alz+!

I'm sorry about your children's father. Heart disease is no joke.

I am just about to leave for a heart disease support group meeting. I do not usually attend each month, but this month the topic will be "Can modifying your diet reverse heart disease?" Cardiovascular problems are implicated in some dementia.

Iris L.

JEJ
Posted: Wednesday, February 18, 2015 2:55 PM
Joined: 2/17/2015
Posts: 131


My spouse was diagnoised with PCA this past summer.
His first symptoms that I noticed was in his driving and not being able to work on minor repairs at home. It seemed as though the repairs all looked like a puzzle, whereas before he could repair most things.
I have tried to read all that I can find about PCA .
I would appreciate help in recognizing the stages of PCA .
My spouse is 63 years old and he no longer drives which has been a very difficult situation to accept.
Praying for the patients and caregivers daily.


alz+
Posted: Friday, February 20, 2015 8:39 AM
Joined: 9/12/2013
Posts: 3608


I am interested in HOW the diagnosis of PCA was made.

There is a good list of symptoms posted nearer start of this topic. I have done some research on what exactly is the difference between ALZ and PCA and have come to a conclusion that the symptoms are going to vary according to a person's previous mental abilities, creativity, personality, the situation they live in and of course what parts of the brain are being affected, clogged, or withering.

I suspect the neurologist who first thought I had PCA was right, but he was forced to retire right after my diagnosis and no other doctor I have seen seems to think it matters. I am staying in the desert near Palm Springs where there are some researches working and a couple doctors specializing in dementia but am weighing the cost vs worth to have another scan done.

Please tell us more about how he was diagnosed. I wish him the best and think you will find lots of ways to support him on these boards. He can do well for a long time in the right environment for him.

I too had problems driving and did not like to drive because of the visual problems so I gave it up. It took a year to figure out being a passenger was ALSO DIFFICULT because it looks like cars are coming out of nowhere at me. I am now riding only in back seat, eyes down and this instantly stopped the panic reactions I had been having when in car. Look for simple solutions. I hope he can read the boards and participate soon.


there is a lot of help and hope - do not believe the common myths. Make this time be the best for both of you.

love and courage

JEJ
Posted: Sunday, March 15, 2015 1:07 PM
Joined: 2/17/2015
Posts: 131


alz+,
Diagnosis was determined by extensive neurology cognitive testing, neuropsychologist test, MRI, pet scan and spinal tap.
We do plan on getting a second opinion in May.