Diary: 1st May 2018 – What is PCA?!

What a week. This is not the update I wanted to write. I wish I’d written one on Sunday or yesterday before I got home. I had started to really process everything and felt that I had finally reached some sort of positive acceptance. It took a few days and a day off work to get there but I was actually “ok”.

Unfortunately, we’ve been unlucky and another curve ball came in out of nowhere, by way of the official doctors letter when I got home from work last night. The official diagnosis, sat there staring at me;

Dementia of Alzheimer’s Type, early onset (Likely Posterior Cortical Atrophy Variant) 

Reading that was bewildering; I’d never heard of Posterior Cortical Atrophy. The doctor didn’t mention anything about it in the meeting?! Google can be a horrible thing in these situations, but quickly answered my question, “What is Posterior Cortical Atrophy?”:

“Posterior cortical atrophy (PCA) is a rare form of Dementia that usually begins by affecting a person’s vision…”Many people diagnosed with PCA will often be registered as blind during later stages of the disease.”

What?!? Blind?!?

I cried for the best part of an hour.

Atypical Alzheimers is what we were told. And yes, it’s factually accurate but the candid details of what this meant in real life terms had never been disclosed. I was furious. One of the key aspects of PCA, I discovered (thanks, Google), is its brutal deterioration of vision and spacial awareness (an area that had in fact been highlighted as problematic for Dad). This is not caused by the eyes themselves but in fact how messages are relayed by the brain.

For me, it was like a light bulb going off; the issues with the iPad, the falls… it’s not his glasses that are the problem – something I’ve been consistently having a go about, for months on end – it’s this f-king disease causing him further pain and anguish.

My father is too intelligent for his own good sometimes. He’s found ways to cover up his difficulties as far as is possible, just short of lying about them. He’s a proud man and not one to want to cause any unnecessary commotion. But the words “I can’t see what you’re talking about” from a few weeks before, hauntingly rang through my ears in that moment. 

I’m grateful to a very dear friend who let me cry and shout down the phone, the majority of which were incoherent rants. Honest and true friendship right there. I was so angry. So heartbroken. So unprepared for another swipe at his dignity.

It was too late in the evening to speak to the doctor but I called first thing this morning; I couldn’t wait. I needed answers, now. She profusely apologised for not going into specific detail regarding the specific etiology / cause of his “atypical Alzheimers” but that she had focused our time on treatment options (however frugal they might be…) and believed vision didn’t appear to be such a key problematic area for him.

After I explained how much I had chastised him regarding the need to go to opticians and a number of specific incidents, we both realised how much had gone a miss throughout the testing phase (even despite the lengthily review process).

We agreed, he’s far too smart, my Dad. He still manages to out-smart us all. His cunning and impressive tactics and have covered up just how far the disease has progressed and sadly, may even mean the stage at which he’s been diagnosed at is inaccurate. 

Following our lengthy discussion, the Doctor has now pointed me in the direction of a PCA support group and I will be looking to discover as much as I can about this little known Dementia and how we can fight it together for as long as is possible. 

Note: For more information on PCA, other Rare Dementias and support available, please reach out to RDS here: https://www.raredementiasupport.org/