PD study at 20 years mark

[Ronhutton]

I hesitate to post this study, but we should share this sort of information. It makes bleak reading, but just remind yourself it is not going to happen to you, be positive.

Hely MA, Reid WG, Adena MA, Halliday GM, Morris JG. The Sydney multicenter study of Parkinson's disease: The inevitability of dementia at 20 years. Mov Disord. 2008 Feb 28 [Epub ahead of print]

Department of Neurology, Westmead Hospital, Westmead, New South Wales, Australia

20 years after first diagnosis:
* 74% had died. (100 out of 136 people)
* Of the survivors, 83% had dementia.
* Only one person still lives independently
* Falls have occurred in 87%
* 71% had urinary incontinence.
* 74% had hallucinations.
* 70% suffered excessive daytime sleepiness.
* Freezing in 81%

Daunting, but there are still worse illnesses than PD.
I have only 3 years to go to my 20 years mark, and yesterday played chess and football with my grandchildren. However, I have freezing problems, dyskinesia and suspect I have fractured my knee and shoulder in falls.
Ron

[imark3000]

If you take a random sample of 100 poeple, my guess is 70% will be dead in 40 years ? but no body thinks or should think of it.

[Chicory]

Is there any information on the age of the people in the study? Did it include people with young onset parkinson's? What percentage?

[reverett123]

I prefer to think of this as a control group who did just what their doctors told them. And the doctors of 20 years ago at that. Ron is a good example showing that alternatives such as curcumin are dismissed at one's peril.

[CTenaLouise]

since I was dxd -as a young onsetter at age 30 or before?
that would mean 5 more years for me! :D

life is funny - we can only count today... tomorrow we hope for, but we are not gauranteed that life may be here for me/ us in 24 hours, so
I will take the one day at a time road, by far the least stressful....

many of my friends I have known and loved are gone, and I must say there is a quite a few, or dozens... but life is now - so lets take stats with a grain of salt - and be happy for what friends we have and those that are waiting for us - in heaven...


be anxious for nothing... give thanks in all things...

[aftermathman]

so I am surprised only 74% have died by the time they are (on average) 80. The incidence of dementia suggests a higher age group (as I believe dementia is rare for young onset), so some degree of confusion at a later age is not unusual.

I guess we need to define the terms here, what degree of dementia, I fell 2 days ago so what do we mean by falls, I am already in the excessive daytime sleepiness due to Mirapex and after my last visit to the pub I won't mention urinary incontinence or hallucinations.

Your story has always inspired me Ron, I hope I will follow your path.

Neil.

[Ronhutton]

Hi Chicory,
I have not got the average age of the participants, I only have the abstract below.
Ron

Mov Disord. 2008 Feb 28 [Epub ahead of print] Links
The Sydney multicenter study of Parkinson's disease: The inevitability of dementia at 20 years.Hely MA, Reid WG, Adena MA, Halliday GM, Morris JG.
Department of Neurology, Westmead Hospital, Westmead, New South Wales, Australia.

After 20 years follow-up of newly diagnosed patients with Parkinson's disease (PD), 100 of 136 (74%) have died. The mortality rate fell in the first 3 years of treatment, then rose compared to the general population, the standardized mortality ratio from 15 to 20 years reaching 3.1. Drug induced dyskinesia and end of dose failure were experienced by most patients, but the main current problems relate to the non-levodopa responsive features of the disease. Dementia is present in 83% of 20-year survivors. Dementia correlates with increasing age and probably reflects an interplay of multiple pathologies. Seventeen people with dementia had postmortems. Eight had diffuse Lewy bodies as the only cause of dementia, while others had mixed neuropathology. Only one person lives independently and 48% are in nursing homes. Excessive daytime sleepiness is noted in 70%, falls have occurred in 87%, freezing in 81%, fractures in 35%, symptomatic postural hypotension in 48%, urinary incontinence in 71%, moderate dysarthria in 81%, choking in 48%, and hallucinations in 74%. The challenge is to understand the cellular mechanisms underlying the diverse features of advanced PD that go far beyond a lack of dopamine. (c) 2008 Movement Disorder Society.

PMID: 18307261 [PubMed - as supplied by publisher]

[jcitron]

Interesting study, Ron. The thing with statistics is that the study doesn't mention the age of onset of the disease. These people could have been elderly or late middle age to start with. The other thing too is medication and other treatments have changed quite a bit from 20 years ago when these people started. DBS was unheard of and exercise was frowned upon just to mention a couple of other things as well. These types of therapies can mean a big difference in how some one heals or deals with the disease.

The other thing too is what kind of state did this group start in. No where does this study indicate that they were healthy above and beyond the PD. A few of these people died with Lewy Body inclusions in their cells. Isn't LBD different from PD?

The other thing too is right now I've fallen probably a dozen times over the course of a few months. I can say that it's more of a pride thing that's been broken so nothing severe yet. I also have the constipation, the extreme daytime sleepieness. (A good afternoon nap always feels really good), and a little bit of urinary urgency - not enough to cause problems, but enough to be annoying. If I were to listen to my bladder, I'd be thethered to the bathroom! So right now it's a little bit of a brain game with this, and I take extra precautions before I go out or go to bed.


So having said this, I'm not too worried at this time. By the time I've developed full dementia, I'll be in my 70s and a lot can happen in the intervening years to either prevent that from happening or hastening it. We really don't know so there's no reason to worry about it at this point.

John

[reverett123]

Contrast the information we have available to that of 20 years ago. We know the dangers of inflammation, the advantages of turmeric, and dozens of other critical bits of data that that group never had. Remember that when they began it was still going to be fifteen years before science would realize that neurogenesis was even possible.

[made it up]

I've been seen or treated by 3 of the researchers mentioned above who carried out this study and I've got to say their research and data is pretty old fashioned in my opinion.
One of them I saw was a neuropsychologist in the early days of diagnosis who has done no follow up studies on me.
Another I saw both in the early days of diagnosis and approximately ten yrs later.
The other one I saw also about ten yrs post diagnosis. Both of the last two mentioned are well respected neurologists.
Someone wrote about things changing and I totally agree.
At that time anyway none of the abovementioned were involved in DBS programs and like many physicians seemed to be opposed to surgery when I mentioned it.
I wish they could see me now 4 yrs post DBS and my quality of life parkinsons wise is bloody wonderful!
So yeah, I wouldn't read too much into their study.
Lee

[CTenaLouise]

so I am surprised only 74% have died by the time they are (on average) 80. The incidence of dementia suggests a higher age group (as I believe dementia is rare for young onset), so some degree of confusion at a later age is not unusual.

I guess we need to define the terms here, what degree of dementia, I fell 2 days ago so what do we mean by falls, I am already in the excessive daytime sleepiness due to Mirapex and after my last visit to the pub I won't mention urinary incontinence or hallucinations.

Your story has always inspired me Ron, I hope I will follow your path.

Neil.

Dear Neil,
I was - was on that drug called - Mirapex - and if I were you -and because
you are having the classic side affects from Mirapex -which is a sudden
drop in blood pressure -hallucinations -
I would tell you as I know personally - you will regain your mind
after you are off of the drug for at leaat one month, the brain smog/ fog
will lift and it was my first feeling of whatever my normal was,
returned slowly - but I never want to feel that way again...

[jcitron]

Dear Neil,
I was - was on that drug called - Mirapex - and if I were you -and because
you are having the classic side affects from Mirapex -which is a sudden
drop in blood pressure -hallucinations -
I would tell you as I know personally - you will regain your mind
after you are off of the drug for at leaat one month, the brain smog/ fog
will lift and it was my first feeling of whatever my normal was,
returned slowly - but I never want to feel that way again...

The same thing happened to me on this stuff. I would randomly check for light leaks and found myself asleep at the keyboard when attending an online class. I closed my eyes for "just a minute" and woke up 4 hours later. That constant brain farty feeling was miserable. It took me about two months to get my senses back to almost where they used to be.

John

[Howardh]

just luv to rib our Aussie bros from across the ditch. Things will not be running tooooo hot today as the major summer sport in Aussie land is cricket which the Aussies are the best on the planet. Playing in front of 70,000 demented screeming Queensland fans and tens of millions more watching via their television screens from Mumbai to Karachi, the home team were thrashed by India yesterday much too the delight of 3 million kiwis watching on this side of the Tasman. Well done India.

Memo to Aussie study group....After 20 years with Parkinson's we are not going to be a pretty sight, that is not rocket science, or a ground breaking revelation. We are at the start of a cultural revolution in medical science where new knowledge is happening exponentially. If we let science just get on with it free from the tyranny of say much achieve little politicians, the 20 year mark with Parkinson's will be a thing of the past.

[CTenaLouise]

Mirapex noted side effects:

More common - Dizziness, lightheadedness, or fainting, especially when standing up; drowsiness; hallucinations (seeing, hearing, or feeling things that are not there); nausea; trouble in sleeping; twitching, twisting, or other unusual body movements; unusual tiredness or weakness

Less common - Confusion; cough; difficulty in swallowing; double vision or other changes in vision; falling asleep without warning; fearfulness, suspiciousness, or other mental changes; fever; frequent urination; memory loss; muscle or joint pain; muscle weakness; restlessness or need to keep moving; shortness of breath; blackouts; swelling of body; tightness in chest; troubled breathing; wheezing; writhing, twisting, or other unusual body movements; overeating; hypersexuality or decreased sexual interest or ability; excessive shopping/gambling

Rare - Abnormal thinking; anxiety; bloody or cloudy urine; chest pain; difficult, burning, or painful urination; dizziness; frequent urge to urinate; loss of bladder control; mood or mental changes; swelling of arms or legs

Source:
http://www.drugs.com/cons/mirapex.html