PCA diagnosis for LO

Daughter80

Hi,

I recently heard about Posterior Cortical Atrophy (PCA) and it sounds so much like what is going on with my mom. For her it’s like she is blind. She has poor depth perception, no peripheral vision, has complained of blurry and double vision, she needs someone with her when so goes anywhere to just make sure she sees things like curbs, glass doors, slanted flooring.  She struggles to read. Sees things that are not there. Like a shadow is a table to her. Colors are totally different to her. Things she used to love in art she can’t stand. Anything muted or black and white. She prefers really bright colors and things with high contrast. She doesn’t write but will sign her name. She has no idea how to find the line to sign her name on and will sign her name with a severe slant. And if I hand her something she has difficulty being able to take it from me due to weird perception of depth. 

From what I have read it won’t make much of a difference, but if this is what she has I think knowing it can help us in our care for her. Does anyone have a formal diagnosis of PCA for their loved one?  What does it look like for your LO?  Thanks in advance. 

May flowers

This is very interesting to me. My FIL has macular degeneration but there has been more to his vision like double vision and depth perception. He has not had any eye diagnosis other than MD. I know exactly what you mean about signing their name, if I asked my FIL to close his eyes, place his hand on the paper and ask him to sign, he could do it much more legible.

From a caregiving standpoint, I know that walking in front of my FIL holding hands helps him rather than walking beside him. Instead of handing him things, I take his hand and place objects in it. If it’s food, I place the spoon in one hand and show him where the plate is with his other hand. An OT suggested a lot of contrast - so we place dark food on light plates and light food on dark plates and it really has helped. Also, I talk to him and tell him exactly what I’m doing before I touch him and I do very slow movements. He really startles if you just quickly put something in front of him.

Daughter80

So interesting. Your FIL and my mom sound similar in so many ways. My mom was diagnosed at the age of 66 but looking back I think she could have even gotten a diagnosis at 60. That was another PCA trait. Younger onset 50-60 yo. My mom’s eyes are technically perfect besides needing glasses to read, but I went with her to her eye doctor appointment and it was crazy to hear her read letters (the largest they had). She would mix them up and repeat some but not others like they were moving. I wonder if this is a part of your FIL’s disease. How old is he? How old was he when diagnosed? It also mentioned that the verbal abilities stayed in tact longer. My mom speaks perfectly fine. That’s actually one of her favorite hobbies. Talking. Lol.

May flowers

My FIL was dx about 8 years ago with vascular dementia but had symptoms a few years prior, maybe about 6 years ago with macular degeneration. He is 82. The first time we knew something was different with his vision than just MD was when he was describing written words being split in half, and swimming. The eye dr prescribed some prism glasses for double vision and it helped some. 

The dementia part of this made it very hard to use any type of glasses or bifocals. He never understood looking through one part of the glasses for distance and the other for reading. 

My FIL has been very verbal until now, stage 7. He communicated well, and could still tell good stories throughout stage 6

Daughter80

Wow, it sounds like he has a lot going on. It’s crazy how it can be so different for everybody. I don’t know if I should even pursue a diagnosis of PCA. It doesn’t look like it would make much of a difference in the way of treatment, but I could see for care it might. Is your father-in-law still on hospice?

May flowers

He is still on hospice, but he is holding steady physically and has gained weight so I don’t know if he will be renewed next recert.

From what I’ve read about PCA, I don’t know that there is much by way of treatment. I do think that AREDs vitamin helped my FIL’s MD for a long time, but not the other visual issues.

Daughter80

What is a recertification?  My dad was on hospice but only for three months before he passed.  Such a hard place for sure, but hospice was such a blessing. Hugs to you all. I haven’t heard of this ARED vitamin, but will look it up now. Thank you.

May flowers

I’m sorry about your dad. 

Hospice re-evaluates periodically to see whether to keep someone on hospice or if they seem to be improving they may kick them off. The problem with dementia is they might look better physically but are still deteriorating. Weight gain is one factor they look at. My FIL has gained weight due to being less mobile, but not because he’s improving for example.

RGF

This is my first post.  I’ve mostly been a voyeur - that’s if  I can find this message board!

My husband was diagnosed w PCA in January 2020. Posterior Cortical Atrophy. In essence it is a form of Alzheimer’s where the atrophy is at the posterior of the brain.

Your description of your mother is exactly issues for my husband.  First he doesn’t drive any longer.   I mark X’s where he needs to sign, he  can’t calculate numbers, can’t “see” grid to add tip to credit card .  Then there are  the usual Early onset alz behaviors.   I too agree that it doesn’t really matter but does help knowing their eyesight issues.  I’m not sure if I helped you but at least you know I’m in your same boat! 

Daughter80

Thanks May Flowers. I definitely hope you can keep hospice care of at all possible. I’m sure it is helpful. 

Thanks for posting for your first time RGF. It definitely does help to know we are the only ones going through this. Even if nothing changes there is something about knowing you’re not alone is comforting. Especially knowing that we are doing all we can for our LOs. I am so afraid that I will miss something that could have helped my mom. So sad that even learning more about her condition only helps that we know, but doesn’t really help her. I guess in day to day life maybe knowing will help us help her better and me a better advocate for her. Are there any thing you do to help your husband that you might suggest?  How difficult for you to go through this with your husband. Hugs to you. 

rlpete

Hi, my wife has been diagnosed with mixed dementia however PCA is her primary diagnosis. We did not go through all the possible tests to confirm 100% as those tests cause my wife such anxiety but the description is exactly what she has experienced. 

It started around age 60 with the vision problems. She went through all the various eye tests and her eyes are fine. She has all the problems you mention, numbers, depth, color, reading, etc. For awhile one of her activities was to make lists of things (animals, food, etc.) just to keep her writing skills. It worked for awhile but now she really can't sign her name. She even has trouble focusing on a photograph placed in front of her. I can watch her eyes and see they are not focusing. Eating is a problem as she frequently chases food around the plate. Walking around the block is hard as curbs are not good. 

She has reached a point where short memory is a problem. Long term is still good. She frequently loses her train of thought in conversations. I'm not sure if that is the PCA or part of the mixed dementia but it really doesn't matter. 

As for a few things we have found that work...Constrasting colors. Her drinking glasses are blue and green. She sees that much better. We have that blue painters tape used for edging taped around the house to help her identify specific things. It works. For eating, stabbing is the best method. Linguini isn't a good pasta for her. Something like penne or orecchiette is better as it can be stabbed. We don't eat soups any more. As for walking, our neighborhood has a community center and we do laps in the parking lot there as there are no curbs. 

Anyway, hope this helps. I just recently joined here as I was looking for others suffering through this dementia.   

May flowers

Following up on rlpete’s post, we bought these plate/bowls on Amazon and they are the best thing ever for someone with vision issues. https://www.amazon.com/gp/product/B088Y869DM/

For one thing, they are great for contrast, and another, they have rounded edges and lip. He uses his spoon and goes all around the edge until he gets some food. He would be pushing food off of a regular plate but doesn’t with this one. From time to time I push food to the edge so he can swoop around and get it. I usually only have to assist with the last few bites, or when he’s really tired.