PCA, my father, and Terry Prachett...
Feb. 21st, 2020 09:47 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
shadowkat1. End of the week. Going to try and get sleep, get a chest x-ray on Sat, pay bills, and get exercise. Also drink more water.
Talked to a co-worker today who said that he made oatmeal muffins with steel cut oats. Interesting. I may hunt the recipe for that.
I need to find a baked oatmeal recipe that is workable.
2. My mother finally mentioned to my father that he might have rear-brain alzheimers and discussed the symptoms. He asked for more information, she looked it up on the internet and printed it out for him. He said that this really helped a lot, he was feeling so alone, isolated, and frustrated. Didn't understand why this was happening or what it was.
Rear-brain alzheimers otherwise known as posterior cortical atrophy is what the best-selling British fantasy novelist Terry Prachett died of, eventually.
My father exhibited the same symptoms Prachett had, that's why I decided it had to be rear-brain. This is the portion of the brain that controls vision or how our eye communicates images to our brain.
My father was an artist. Not necessarily for a living. So frustrated one. He could draw just about anything. I get my artistic ability from him, as does my brother. He was going to be a cartoonist at one stage. And has written and published six books.
Also an avid reader and historian.
Now? He can barely read, he can't draw at all, and he can't write. He used to spend hours doing watercolors, good ones, and writing his stories. He can't do it now.
Why?
Symptoms
The symptoms of posterior cortical atrophy can vary from one person to the next and can change as the condition progresses. The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information. Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with posterior cortical atrophy experience anxiety, possibly because they know something is wrong. In the early stages of posterior cortical atrophy, most people do not have markedly reduced memory, but memory can be affected in later stages.
Also... 9 Things You Should Know About Rear-Brain Alzheimers.
Note Terry Prachett got it at 69, it hit my father much later, closer to 75 or 76, was when the signs started.
“Sometimes I cannot see what is there,” he wrote.
“I see the teacup with my eyes, but my brain refuses to send me the teacup message. It’s very Zen. First, there is no teacup and then, because I know there is a teacup, the teacup will appear the next time I look.
“I have little work-arounds to deal with this sort of thing – people with PCA live in a world of work-arounds.”
That's how I knew it was what my father was going through. He described the same thing. I'd watch him -- he didn't know where the glass was on the table, sometimes he could find it sometimes he couldn't.
Terry Prachette discusses being diagnosed with PCA:
Terry Prachett co-wrote Good Omens with Neil Gaiman, along with the Discworld novels and various others. PCA took away his ability to tell stories, to write, to draw,
to read. But he found ways to handle it up until the end.
I knew Prachett had Alzheimers, and I knew his problems with it long before my father began to exhibit symptoms.
But I didn't know how close those symptoms were to my father's until March 29, 2019.
In this POST - I link to a Tim Ferris interview with Neil Gaiman where he describes in detail Prachett's symptoms, and I began to cry. They were the same symptoms my father exhibited. I told my mother. But she didn't think to mention it to my father until the other day, when he got very frustrated at his "Memory Matters" course. The assignment was to draw President Lincoln. My father used to be able to draw beautifully. But all he could do was some sort of blob. When they looked at it, he quipped, "I drew Lincoln's brain." And he made a joke of it. But he was bothered by this and told my mother that he felt alone and didn't understand why he couldn't draw any longer. That's when she mentioned what I'd been telling her over and over again since March 29, 2019. That I thought my father had rear-brain alzheimers. He got interested. She looked it up -- said it mentioned Terry Prachett and various sources in the UK. She printed off the symptoms and read them to my father. His eyes lit up. For the first time, he said, he felt less alone. That he understood what was happening to him.
If it weren't for Terry Prachett telling his story, and Neil Gaiman talking about it - I'd have never realized that this is what my father was suffering from -- and I wouldn't have kept mentioning it to my mother, who finally told my father yesterday -- and finally gave him some comfort and an idea on how to proceed.
They've decided to go to the library and pick up various books on CD, and audio books. And see if they can find things that my father can do that are different from what he did in the past.
I'm sharing this - in my own rambling off-kilter way - to show how we can affect and change each other's lives in positive ways without realizing it or ever knowing we've done it.
Talked to a co-worker today who said that he made oatmeal muffins with steel cut oats. Interesting. I may hunt the recipe for that.
I need to find a baked oatmeal recipe that is workable.
2. My mother finally mentioned to my father that he might have rear-brain alzheimers and discussed the symptoms. He asked for more information, she looked it up on the internet and printed it out for him. He said that this really helped a lot, he was feeling so alone, isolated, and frustrated. Didn't understand why this was happening or what it was.
Rear-brain alzheimers otherwise known as posterior cortical atrophy is what the best-selling British fantasy novelist Terry Prachett died of, eventually.
My father exhibited the same symptoms Prachett had, that's why I decided it had to be rear-brain. This is the portion of the brain that controls vision or how our eye communicates images to our brain.
My father was an artist. Not necessarily for a living. So frustrated one. He could draw just about anything. I get my artistic ability from him, as does my brother. He was going to be a cartoonist at one stage. And has written and published six books.
Also an avid reader and historian.
Now? He can barely read, he can't draw at all, and he can't write. He used to spend hours doing watercolors, good ones, and writing his stories. He can't do it now.
Why?
Symptoms
The symptoms of posterior cortical atrophy can vary from one person to the next and can change as the condition progresses. The most common symptoms are consistent with damage to the posterior cortex of the brain, an area responsible for processing visual information. Consistent with this neurological damage are slowly developing difficulties with visual tasks such as reading a line of text, judging distances, distinguishing between moving objects and stationary objects, inability to perceive more than one object at a time, disorientation, and difficulty maneuvering, identifying, and using tools or common objects. Some patients experience hallucinations. Other symptoms can include difficulty performing mathematical calculations or spelling, and many people with posterior cortical atrophy experience anxiety, possibly because they know something is wrong. In the early stages of posterior cortical atrophy, most people do not have markedly reduced memory, but memory can be affected in later stages.
Also... 9 Things You Should Know About Rear-Brain Alzheimers.
Note Terry Prachett got it at 69, it hit my father much later, closer to 75 or 76, was when the signs started.
“Sometimes I cannot see what is there,” he wrote.
“I see the teacup with my eyes, but my brain refuses to send me the teacup message. It’s very Zen. First, there is no teacup and then, because I know there is a teacup, the teacup will appear the next time I look.
“I have little work-arounds to deal with this sort of thing – people with PCA live in a world of work-arounds.”
That's how I knew it was what my father was going through. He described the same thing. I'd watch him -- he didn't know where the glass was on the table, sometimes he could find it sometimes he couldn't.
Terry Prachette discusses being diagnosed with PCA:
Terry Prachett co-wrote Good Omens with Neil Gaiman, along with the Discworld novels and various others. PCA took away his ability to tell stories, to write, to draw,
to read. But he found ways to handle it up until the end.
I knew Prachett had Alzheimers, and I knew his problems with it long before my father began to exhibit symptoms.
But I didn't know how close those symptoms were to my father's until March 29, 2019.
In this POST - I link to a Tim Ferris interview with Neil Gaiman where he describes in detail Prachett's symptoms, and I began to cry. They were the same symptoms my father exhibited. I told my mother. But she didn't think to mention it to my father until the other day, when he got very frustrated at his "Memory Matters" course. The assignment was to draw President Lincoln. My father used to be able to draw beautifully. But all he could do was some sort of blob. When they looked at it, he quipped, "I drew Lincoln's brain." And he made a joke of it. But he was bothered by this and told my mother that he felt alone and didn't understand why he couldn't draw any longer. That's when she mentioned what I'd been telling her over and over again since March 29, 2019. That I thought my father had rear-brain alzheimers. He got interested. She looked it up -- said it mentioned Terry Prachett and various sources in the UK. She printed off the symptoms and read them to my father. His eyes lit up. For the first time, he said, he felt less alone. That he understood what was happening to him.
If it weren't for Terry Prachett telling his story, and Neil Gaiman talking about it - I'd have never realized that this is what my father was suffering from -- and I wouldn't have kept mentioning it to my mother, who finally told my father yesterday -- and finally gave him some comfort and an idea on how to proceed.
They've decided to go to the library and pick up various books on CD, and audio books. And see if they can find things that my father can do that are different from what he did in the past.
I'm sharing this - in my own rambling off-kilter way - to show how we can affect and change each other's lives in positive ways without realizing it or ever knowing we've done it.
no subject
Date: 2020-02-22 10:35 am (UTC)no subject
Date: 2020-02-22 01:35 pm (UTC)Dementia is hard to diagnose well, and if you watched Terry Prachett's documentary, Prachett states that PCA is almost impossible to diagnose. Because the symptoms can look like something else, or not show what the doctor is used to.
I don't have a lot of respect for the medical profession. It took ten-fifteen doctors over approximately a thirty year period for me to be diagnosed with ceiliac disease. And up until my current doctor, after I fired five of them, I didn't have a diagnosis of candida overgrowth due to too much sugar - the last idiot told me that was hogwash, and to just lose weight and exercise. My sister-in-law went to a doctor worried about a rash, he dismissed it, it was shingles.
The UK has actually done a better job in diagnosing alzheimers and ceiliac than the US. Part of the US's problem is the doctors are unfortunately backed by pharmeceutical companies -- and insurance companies. We have a for-profit industry behind them. Also they have no background in nutrition.
If you have a problem? They throw pills at it. I resist medication as much as possible. And a lot of doctors don't know about interactions, nor do a lot of pharmacists.