Cecil R. - Posterior Cortical Atrophy Doesn't Have Me


July of 2012  I am 59 years old. I was told I have PCA a Visual Variant of Alzheimers. That I have between 8 to 12 years to live. Unlike regular Alzheimer's, the progress is much quicker, and mobility, balance and vison are affected to the point I should seek help from Services for the Blind. 

The news is devastating. There is no cure, there are meds for depression and some for Alzheimer's, but that is it. I am not a shell of a man, who used to be a Military policeman, then a Special Education Teacher, and a Caregiver for the severely disabled (because teaching doesn't pay enough).  I have learned a lot about 'coping' and this is one more thing to cope with. I see 4 of everything within 8 feet. I haven't seen my face in 4  years and I cannot recognize family members. They don't want to visit me. My wife is helpful, but it's all too much for her and she needs to work. 

I have to re-teach myself basic skills every week as I digress. Typing is with the help of a narrator program that calls out the keystrokes and reads it back to me. This has taken me about three hours to write. I don't get to choose what works and doesn't work. The back part of my brain is dying.  I am about Stage 5 out of 7 stages of PCA and I'm told that Stage 7 slips into regular Alzheimer's and when I'm bedridden I will have about a week. 

Dr. Benson discovered this early onset sydrome about 35 years ago in San Francisco. He worked for an Alzhemer's Research Team. No real progress has been made since then. Now the government wants to dissassociate care resources in order to keep Alzheimer's at home instead of managed care facilities and assisted living schemes. Their response is to put the burden on families, while family response is to withdraw entirely and the Alzheimer's patient is ultimately left alone. No family, no help, nowhere to go, and nowhere to live. And that's it, too. 

I live. I fight for existance. I breathe. But that isn't good enough. I will be gone in a couple of years and, again, nothing will be accomplished ~ unless we keep fighting for a cure.



Tags: People with Alzheimer's