PD is bad enough on its own without dementia. My mother has had the early onset variety since her mid-thirties, and while her cognitive function has clearly declined, she's no where near dementia. On its own, the disease is like prison. You slowly become trapped in your own body and lose the ability to have an impact on the world around you. The treatments and medication cause diskinesia (the violent/uncontrollable tremors associated with the disease) and the wrong dose (for that day/time), or the wrong setting on the implant they put into the motor cortex to stimulate it, is as bad as no treatment at all. Depression is a common co-morbidity.

Parkinsonism is watching yourself die with full knowledge of what's happening to you and a complete inability to do anything about it. My mother had polio as a child as well, so she's trying to learn to walk for the third time.

There is no fate I find more horrifying on a personal level. None.

As in Alzheimer's dementia ? ..

Yes, that's right.

Adding to this, dementia might be a "side" effect of the medication for the muscles' rigidity. It's hard to explain but eventually there comes a time when you need to opt between not being able to move or take the medication and start having more and more frequent surreal visions.

My grandfather survived a few cancer appearances but during the last surgery to remove some cancer lumps he woke up as a completely new person. It seems the anesthesia triggered the first signs of Parkinson's and dementia exactly at the same time. He was pretty "normal" before the surgery but after it he couldn't walk and thought the hospital staff attacked him with dogs during the night. Fortunately (?) he didn't last long after that day but still had time to be kicked off from his home by my grandmother who couldn't handle the dementia.

Sorry for the rant, I'm obviously not over it, will never be. Dementia is the worst thing I've ever witnessed.

> He was pretty "normal" before the surgery but after it he couldn't walk and thought the hospital staff attacked him with dogs during the night.

Apparently delirium is a common side effect of whatever they do in hospitals. I came across this link last month:

"Delirium: A Surprising Side Effect of Hospital Stays -- Often misdiagnosed as dementia, it can cause hallucinations and delusions" - http://www.nextavenue.org/delirium-a-surprising-side-effect-...

If you're lucky they'll feed you coconut oil (short saturated fatty acids are easily burned in the cells for energy) and the dementia will pass. If you're not lucky they'll give you "anti-psychotic" drugs to sedate you, or other interventions that ruin the metabolism. Many treatments have the side effect of ensuring the patient will never recover.

To be honest, is seems more likely the 'delirium' is actually mild psychosis brought on by excess dopamine in the PDF in particular. Many Parkinson's medicines treat some of the cognitive deficits it can cause with stuff like L-Dopa and other 'pro dopamine' drugs. Given the brain is progressively becoming more 'dysfunctional', some abnormal brain functionality + excess synaptic dopamine is probably psychosis waiting to happen.

However, I'd personal take the intermittent low level psychosis any day if it meant retaining my brain, retaining 'me', for just a bit longer.

Also yeah, as stated elsewhere: Parkinson's + anti-psychotic meds == dangerous and egregious medical malpractice. Anti-psychotics are basically an anti-cute for Parkinson's, given the generally work by attenuating dopamine prevalence in various synaptic clefts.

PDF? Do you mean PFC?

Sorry, damn phone spell check. Yeah I meant PFC.

Out of curiosity, how does coconut oil help with "delirium"?

My thinking is that delirium is probably a symptom of impaired metabolism and/or malnourishment and/or insulin resistance. When a person's mitochondria can't make enough ATP to keep them going, sometimes they become delirious/psychotic [1].

Coconut oil is useful because of its high proportion of medium chain triglicerides. Longer fatty acids have to be transported with carnitine to be metabolized in the mitochondria.

https://en.wikipedia.org/wiki/Medium-chain_triglyceride#Medi... https://en.wikipedia.org/wiki/Fatty_acid_metabolism#Fatty_ac...

The alcoholic brain tends to be insulin resistant, and uses acetate (a breakdown product of ethanol) as fuel, because glucose isn't available, or isn't can't be delivered to the mitochondria in sufficient quantity.

  [1]
  Thus, without careful assessment and history, delirium can easily be confused 
  with a number of psychiatric disorders or long term organic brain syndromes, 
  because many of the signs and symptoms of delirium are conditions also present 
  in dementia, depression, and psychosis.

- https://en.wikipedia.org/wiki/Delirium (IMHO, doctors distinguish between "delirium" and "psychosis" because they don't realize they have similar etiologies.)

The dementia pre-treatment was an aid to my diagnosis. Hallucinations, wild mood swings, forgetfulness, not recognizing familiar people and places, the whole nine yards, are part and parcel of the whole affair. And then you string a few "good days" together and feel like things might be sort of normal, or at least manageable, again. Then yoink!

Parkinson's kinda sucks that way: I'd say about a third of the people I know with the diagnosis re people I would have been able to point to from across the street and say, "that fellow has Parkinson's." The rest have a presentation that doesn't look much like the textbook, but we have a few things in common if you look deeply enough. Frankly, though, there's a lot of diagnosis by elimination and medication.