[QUOTE=boann:
...now taking no pd meds. ...

boann stopped taking drugs. Your mileage may differ.
Paging Andy Groves... if, of 50 people, 49 are not helped at all by a therapy, but one person improves dramatically, medical research throws it out, because it is no good for 49 out of 50 people.
At Intel, Groves would say, go and investigate the one out of the 50. Something worked for one person. What was it that worked, and can it then be "taught" to the other 49? What worked?


JohnT said: The only thing I can see that you all have in common is the eloquence of your writing.....

What's up with that? I find that PWP are writers and agitators. Or is that scribblers and agitated?
Seriously, there are some ways in which PWP have outbursts of all kinds of creativity or just see things differently because their life-death situation is different. A full therapy would include unleashing that desire that Parkies have to translate the universe.

Boann, what do you think has let you have PD for 16 years and not need any meds? That seems almost miraculous to me.

And Ron, you're 20 years and planning to stop L-Dopa. Amazing. Do you mean stop all forms of dopamine?

===================================

Hi Wendy,
Yes I am down to 0.75 to 100 mg levodopa now, I am not going to stop completely for maybe months, since it has been hard work to gert to this stage. I don't want to ruin the good work getting down this far and have to repeat it. Today for example, I have had no meds at all, it is 7-00am. i got up at 6-00am, washed and dressed, let the dog out and gave her its breakfast. I cleared the kitchen and washed up some dishes. I was walking almost normally. i then went online until about 8-00am when I will take my first meds. including half a 50mg Stavelo.
What has helped me get so far? well I believe long term use of curcumin has helped enormously. Another thing i have learned is don't let yourself get constipated. i have taken high doses of fibre and a laxative called Laxido. An X ray of my abdomen (for non pD purposes) had shown a build up in my bowel. After 4 months of Fibre /laxative, it was still not toptally cleared, shown by another X-ray. So keep your system clear. A build up must generate toxins which get into the blood stream. I wunder how many PDers have this build up problem? See

http://www.foxnews.com/health/2012/0...seen-in-colon/


It is not easy yet, I tend to be great early in the day, but become more off as the day wears on. still a way to go!!
Ron

Hi Wendy,

Not miraculous, just a combination of good fortune and possibly a high tolerance for disability. The first bit of good fortune is that I have never had a lot of rigidity - practically none, in fact, unless I'm really cold or really tense - then I become quite rigid, particularly in the neck and shoulders, and tremor becomes extremely pronounced. Short of that, however, my "tone" is almost completely normal, and my tremor is minimal. The second bit of good fortune was that my neurologist put me on Mirapex rather than levodopa when I first started medication. The third bit of good fortune was working at the Fox foundation for nine years starting in 2002, a little over a year after I started taking Mirapex. That was fortunate in many ways, but, in this context it meant that I had exposure to a lot of people with Parkinson's – early-stage, late stage, and over time, which is probably the most important factor – I saw how people progressed, I saw what happened to people when they took levodopa. At first, it was like magic – worked perfectly – but over time it began to wear thin, and the tweaking started – first, to smaller doses of levodopa more frequently, then, adding one drug, then another, and then possibly a third, all in the interest of maximizing the increasingly elusive on time. Clearly, however, a losing battle was being fought, one that ended, if it ended, in brain surgery.

It didn't take me long to decide that levodopa was not a drug I wanted to take if I could possibly avoid it. I also knew I had to look at the long-term – I was 36 when I was diagnosed in 2000. Average lifespan in this country is 79 years. That meant I would be managing this disease, I hoped, for at least 43 years. As we are all painfully aware, there are only so many arrows in the medication quivver for Parkinson's – levodopa, dopamine agonists, MAO inhibitors, anticholinergics and amantadine – that's about it. I didn't want to use all my arrows early, and I wanted to avoid spending the rest of my life in a complicated cocktail of drugs that really didn't work.

Oddly, my neurologist started me out at the maximum recommended daily dosage of Mirapex, i.e. 4.5 mg a day. It worked very well for a while – years – maybe five or six years? And then it began to wear thin. She would have increased my dosage of Mirapex, but I want to keep it as low as possible. I agreed to try amantadine briefly, but had a bad reaction to it. I switched to Requip briefly, but it did not work for me. So I went back on Mirapex, which continued to wear thinner and thinner – but I still did not want to increase my dose. Finally, it reached a point where it was so thin that I began to wonder if it was helping me at all. Around this time, I started grad school, and my schedule, which had been 9-to-5 for the last 20 years, and which gave me some continuity in terms of cues to take pills (one before work, one at lunch time, one in the evening) became completely erratic – I'm no good at taking pills on time (another reason levodopa would not be a good choice for me) and without my cues, I began missing pills – lots of them – and eventually gave it up completely about three weeks ago.

I walk like Frankenstein, or at least that's how it feels – I cannot type, I can barely write with pen and paper, and my balance is shot, but all of this was the case before I stopped taking Mirapex as well. I tripped and fell twice, recently, but I tripped and fell many times while I was taking Mirapex. Basically, I have not noticed precipitous worsening of my symptoms since I stopped taking Mirapex.

Do I wish I could walk normally, type again, write with pen and paper, and stand without tipping over, not to mention dance, and all of the other less-essential things I have not been able to do for many years? Sure. I could take levodopa, and it would fix all of those problems – but for how long, and at what long-term cost? My lack of rigidity and dystonia means that I'm comfortable always – in fact, I feel completely normal, I just can't move the way I would like to – I don't feel "sick" in any way. If I did, it would likely be a completely different story. Oh, and I started using a personal trainer, and since I've been doing squats, I seem to have remembered how to get out of a chair on the first try – and this was while off Mirapex – what else might I be able to regain without drugs? So, i am going to stay med free for a while, see how it goes.

I hope that all makes sense.

gasting
 

Wow! My flabber just got gasted.
Paging Andy from Intel. Bright red swan alert.

i get to celebrate my 29th year this year. i am 54 years old. i will explain more later. just wanted to check in.

28 years .. oops. lost track, scuze me.

when i was 15 i came down with herpes simplex shingles, menangitis and encephalitis. very rare. the docs pretty much gave up on me. but, i made it and a few years later had the menangitis again. i began having weird symptoms such as severe depression attacks, hyperventalation and a strange type of rigidity. i began to see neuros in my early 20's and finally at age 26 was given a sinemet. it immediatly helped the rigidity, but also immediatly gave me severe dyskenesia. i received the dxd, post-encephalitic parkinsonism.

since that day, i have ran the dammit gammet of meds and all the joys of side-effects and interactions to go with them. i lost track of how many dxd i have had since my movement disorder is a result of something nobody expected me to survive. mainly the dxds were put under the "pdism" umbrella but there always has been hesitation in doing so. my depression i have researched is an after-effect of the encephalitis, and they have tried me on several anti-depressants and anti-anxiety meds. some come with disasterous effects, including suicidal tendacies.

i had the dbs in 2003 and it never worked right. in 2008, it was concluded after a horrific programming session that one of the wires was originally placed in the wrong spot. i began questioning the whole pd thingy as i went from one end of the country in a wheelchair (seattle) with a fellow parkie (ty sm) landed in cleveland clinic for a re-eval and verification of the wrongly placed wire and left there with a reduction of meds, my dbs shut off and me walking. continuing on to rhode island, i was given the dxd of "conversion disorder" by a top doc on pd. i flew back to seattle where a few months later my symptoms began to return.

stress? possibly.. bad environment. stupid doctor syndrome? me thinks a contribution. who knows.

since then, i got a divorce and the dbs has been removed. i began having bad pain and spent nearly the entirety of 2010 in and out of the hospital. my seattle neuro told me i was in advanced stages of pd and i needed to look at skilled nursing homes. i asked for another trip to cc where the neuro there said the pain was definatly not pd related. they also did the daTscan where finally it showed stage 2 of dopamine deficeincy, and damage to the basil ganglia from the encephalitis. yet, no brain cell loss. they were indecisive on dxd. with this info i returned to seattle and found a new neuro.

the pain was still bad and on a trip to urgent care, i found out i have 2 herniated disks in c5,6; t6,7; and degenerative disk disorder in my lower lumbar. in jan of this year, i had a cervical fusion. there is slight relief of pain, yet now a new problem has come up. i get extreme constipation going for 5-9 days between bm. a new pain is in my digestive system and it arises 5-10 minutes after i eat... anything. a colonoscopy revealed 4 palleps (non-cancerous) on my colon. the pd meds barely work and dyskenesias are hard. yet, when i am on.. i walk fine. just read ron's input on this in his reply. interesting and thanks for the advice and info ron,

so... two possibilities on my plate now. mayo clinic has accepted me and i am on the waiting list. or a possible redo of the dbs. i have a neuro appt tues where all will be weighed and discussed. we will see. i havent given up hope

harley and bob
 

harley, rock on. my hat is off to you. bob - red swan? que es eso?

red swan
 

The swan does not have to be red, or even be a swan.
Swans are white.
If you go looking for a swan, you are looking for a big white bird with a long neck that swims gracefully in the ponds of the Gardens of Versailles.
In Nassim Taleb’s story about Black Swans:
Suddenly a black swan appears.
Everybody freaks out.
No one predicted it. Swans are always white.
And the black swan changes everything.
Taleb’s black swan is widely discussed in reference to unexpected events that have a negative impact on the economy; a mis-reading of Taleb, who says that the black swans can bring positive or negative results, to any field of human endeavour, not just finance. But because Black Swan is often used as a negative and as relating to the economy, we have to move on to a different color of swan.
A red swan, for example. It could be a red swan. It does not have to be red, nor does it have to be a swan. We are calling it a red swan because swans are white.
And we want Parkinson’s scientists to pay attention to the red swan. They study the 50,000 white swans, and exclude the red swan because it is an aberration, an outlier; statistical static that falls well within the mathematical margin of error, and can be safely ignored.
When AMGEN said GDNF did not work, they ignored the guy who was 80% improved over several years. “A placebo effect”, they pleaded. Yeah, sure, a placebo effect that lasts for years and that removes 80% of the disability and the pain. But that’s one guy. What do you expect us to do? Treat different patients differently? We need a treatment that the nurse can give to everybody three times a day, with a little paper cup of water.
The red swans are not representative of the disease. They are aberrations. Research grants are for the greatest healthiness of the greatest number. It’s democratic. Swans are vastly majority white. That’s the big market for the pills.
In medicine, you are not likely to get a treatment approved if it helps only a third of the patients. Throw the drug out – it’s no good for two-thirds of the people.
If there are 1,000 PWP in a clinical study, and 999 of them report increased drooling and tremors that just don’t stop; but the one remaining Parkie recovers immediately and then wins all the Gold Medals in every sport in the Olympics, I say go check out THAT person. What is going on out there? Whassup with that?
And that is your red swan.
Don’t be silly, we don’t give research grants to red swans. Swans are white.
In Wikipedia-style: Rare events and discoveries play a massive role in history, science, finance and technology. Scientific methods do not always help us to be ready for a red swan, because of the very nature of small probabilities and rare examples.
Psychological biases make people individually and collectively blind to uncertainty and unaware of the massive role of the rare event in historical affairs.
Such events, considered extreme outliers, collectively play vastly larger roles than regular occurrences.
Andy Grove, creator of Intel (remember when every computer had a sticker on it saying “Intel inside”? This is the guy.) made a speech about Parkinson’s research a few years ago. It used to be on-line at PAN but so far this afternoon I am in the wrong archives and did not find it. He was talking about the outlier, the rare one, the red swan. What is the red one doing that the white ones are not?
Hey Charlie, there’s somebody called Boann over at Neurotalk who stopped taking Mirapex.
Looks like I picked the wrong week to invest heavily in Pharma.

There’s somebody called Reverett123, conducts all these white mice experiments with no mice – they test compounds on themselves instead. Should we check it out?
Are you crazy? Need a billion dollars plus ten years to get it as far as the FDA, who will turn it down if it only saves a third of the wounded. Statistical outlier. Freak case.

…and then there this Aunt Bean with a fava bean farm, and others are dancing and many kinds of exercise… and some herbs…. And some spiritual life-rafts…
Quote from The Economist interview with Andy Groves:
Another business he believes to be ripe for disruption is health care. He complains that the industry seems to innovate much too slowly. The lack of proper electronic medical records and smart “clinical decision systems” bothers him, as does the slow-moving, bureaucratic nature of clinical trials. .. the time it takes for an experiment to proceed from hypothesis to results —around 18 months in chipmaking, but 10-20 years in medicine.
… he shocked the gathered bigwigs by declaring that hoarding patents was an abuse of intellectual-property rights...He insists that firms must use their patents or lose them: “You can’t just sit on your *** and give everyone the finger.”
http://www.economist.com/node/14299624

bob...
 

mwah!!

And another thought about innovation – to my mind there is one single change that could be made that would change everything. As I understand it, currently all a company has to prove is that its product is better than placebo – it does not have to prove that it's better than existing products.

Require companies to show that their product is better than existing products.

"Better" could be defined either as more therapeutically beneficial without changing the overall impact of the side effect profile, or it could be defined as equally therapeutically beneficial, with a much more benign side effect profile.

I think that would increase innovation.

I keep trying to think of arguments that one might put forward to support not requiring that companies show that their product is better than existing products – aside from pharmaceutical companies arguing on their own behalfs, I mean – I can't think of any – can you?