[pegleg]

Hi All - old visitors to this forum and new - oh, and you, too, lurkers!

It has been a full day, and I should be heading for bed, but I have this driving force within me to open a discussion on my future - OUR future. That is what these forums really are for - to share our training and/or experiences here in hopes of changing OUR future.

I have been reading study results here and there that dopamine replacement may not be the best way to treat our disease. I don't have "Stupid" written across my forehead, but I'm pretty sure that this has been known for a long time. Given the body of research, and more specifically the way Parkinson's has historically moved from initially treating newly diagnosed patients with dopamine replacement therapy to usually starting patients on an agonist is the preferred or best medical practice, the fact that we use dopamine replacement could be wrong - very wrong..

You see, science is . . . well, it's a science. Nothing is really proven by what research tells us because it is static - it keeps changing. And nothing is ever really unproven, like dopamine replacement therapy is the best way to treat PD. So what it appears that the medical profession as a body sort of follow each other around, sniffing out what each other is up to in treating various illnesses. They look for something that keeps us, the patients, quiet.

That's right; you read me correctly. The doctors treat us, and when we don't come back to their offices complaining about symptoms, it is assumed that however they have been treating us is working. And it's that way with ALL illnesses. So basically, we, the patients, have been quiet about our disease for 40+ years. Why? Because dopamine replacement works, and it still does.

I know of no drug that so vividly corrects or manages symptoms better or faster than dopamine replacement (other than maybe ADHD or hyperactivity treatment). Let's call our drug L-dopa. I can go off, or have been without L-dopa for several hours (like when I wake up in the morning - if I have slept), and I am an invalid. My words are slurred, my ever-so-slight tremor increases, I cannot walk, hold a pencil, and I drool and hurt pretty much all over. Then I pop a Sinemet (L-dopa), and depending on what activity I have done (how much dopamine was depleted) or what is already in my digestive system to compete with the drug, I become a marvel right before your eyes! Suddenly, the pain subsides, I can write, draw, paint, and my speech is intelligible, however, over the years I tend to slur my words, but I am able to communicate.

SHA-ZAM! I am now able to live a fairly good life for many years, whereas 40 some years ago, after a diagnosis of Parkinson's, patients only survived 5-10 years, and many were institutionalized. So in one sense, dopamine replacement appears to be neuroprotective, since most PD patients live 15-20-30+ years when treated with L-dopa.

BUT - HOLD YER HORSES! Let's examine the history of Parkinson's therapy and compare the quality of life (QOL) of patients so treated. It's pretty much a helleva way to go! Go back and read the thread Paula wrote "My Way Out." Here's the link
http://neurotalk.psychcentral.com/sh...ighlight=paula

My point in all of this rambling is this:

1. We are no closer to a better therapy (faster, better results) than dopamine replacement than we were at least 20-30 years ago.

2. Although we become asymptomatic (without symptoms) after administration of dopamine replacement, our overall quality of life (QOL) is far from even being considered "fair."

3. Have we been quiet about using dopamine replacement too long?

4. Are we in this Parkinson's thing for a quick fix, or for the long run?

5. Is it time to REALLY make some noise about our preference - our demand for a better therapy!

PS - and although another therapy- deep brain stimulation (DBS) - is rapidly becoming the patient choice, I don't want brain surgery again (had it once in a clinical trial). We don't even have a test to show for certain that our problem is lack of dopamine.

Comments?
G-nite - going to crawl to my bedroom for a night of insomnia.
zzzzzzzzzzzzz

[Ronhutton]

Hi Peggy,
I am convinced we need to maker more noise, a LOT more noise.
I spent most of my career in chemical research for indusrial use. I managed 3 Research Centres one in the USA and 2 in the UK. We had a sense of urgency. If we did not produce the required results you could suffer by losing any salary increases to losing your job.
The medical profession seems to have no sense of urgency. (except a few including the London Hospital where I am a member of the team.) in general, they just seem to have to appear to be making progress. So long as they publish a few papers in respected journals, everyone is satisfied.(except us).
I believe there is a lot of scope in the BBB idea. Surerly it has more chance than a lot of the way out projects we see where millions are spent. But it has been ignored by the researchers. I would have to raise funds and have the work done to get anywhere. Then we have the prospect of instantaneous "on" by using nasal drug delivery. A small amount of work has been done here.
In industry, we have targets to meet, careful budgeting, timescales to adhere to. Perhaps we should have a website where we PDers vote for the
quality and results of the work, and highlight those who should get the "wooden spoon". How do we put a sense of urgency into them??
Ron

[reverett123]

There does, indeed, need to be more noise. One of the ironies of PD is that in the early stages when we could actually make some racket, we are lulled by dopamine replacement and the promise of just a five-year wait for the Miracle. Then we wake up one morning and ten years have passed.

I honestly don't know the answer.

[soccertese]

pegleg,
genetic/environmental chronic diseases certainly are much harder to find a cure for than simply finding a better antibiotic and it's amazing that the public in general aren't clamoring for more research efforts into pd and especially alzheimers not just because of the chances of someone getting the disease but also because of the increasing costs, taking care of alzheimers patients will eventually become too expensive.

it's not just healthcare/diseases, you just have to shake your head and look at the response to SANDY by this country, it caused far more damage than 9-11 and yet preperation for more extreme climate is hardly discussed here, and then you compare what the NETHERLANDS spent on dikes,etc and what GERMANY is spending on solar panels/wind turbines, in a country that gets less sunshine than NEW YORK, to reduce their dependence on fossil fuels, it's amazing, i guess having tiny defense budgets gives them the extra money. ok, enough politics.


but again, i have to go back to what i see as the fundamental problem with pd research and that is too few volunteers, even if we had billions to spend and a manhatten style project to find better treatments, it would still take far too long to find volunteers. it's partially the brain surgery aspects where applicable and if no brain surgery required, it's awfully tough to convince patients to go off of levadopa/agonists. just playing devil's advocate here. and, at least 5 procedures that required surgery that had great phaseI results didn't produce successful phase2 results which also discourages volunteers. So I assume being able to develop nerve cells from parkinson's patient's skin cells will help the testing process somewhat. and the other problem is treatments that work great on mice, rats and even primates often don't have the same affect in humans because those species don't naturally get pd.

i was in a trial for sumanirole, a dopamine agonist made by pharmacia(?). in a county with more than a million people, they had 3 volunteers at the end of the trial, which was terminated when pfizer bought out pharmacia. as an aside, i hardly needed meds then so i couldn't say it had much of an affect but the neuro told me one patient had fantastic results, there was an open label phase to the trial and we all got the drug. but just 3 volunteers? i'm not sure how they could have gotten more volunteers, maybe paid them more but in this trial, it was tough if you worked because you had to come in once a week for an hour exam, electrocardiogram, neuro exam and then go to a lab for a blood draw and i often had to wait for longer than an hour for the neuro who had to fit me in to his schedule of seeing his regular patients.

i appreciate your post, certainly gets people thinking.

[Thelma]

Peggy

I have said it over and over now for so many years.

Welcome the general public.

Let the children see in the high schools and colleges see what may be their future.

Get rid of the little uselss groups and amass one giant group.

Look at what the publicity for MJF has done for Parkinsons as well as for MJF

Ron travels a lot and shows himself to the world I admire him for this.

Let all who can get about even in wheelchairs get out and show the world.

This is an aside but I pass all those kettles from the Salvation army at Xmas and watch people throw their good money in the kettles. Who are they saving? and why do all the directors of this mass of volunteers earn $100,000 a year for a volunteer job.

Get a kettle .............. get a xmas calendar..........get somethling and ask Ron there how he wants to get started,,,,,,,,,,,,,,,,

[johnt]

Imagine a world in which a chemist produced a levodopa nasal spray, a doctor was on hand to intervene if anything went wrong, and a PwP tried it. I reckon you could say within a week, YES A WEEK, that it probably reduced PD symptoms or didn't and it was probably safe or wasn't.

If it looked good you'd double the size of the trial in week 2. If it looked bad, you'd drop it and move on to something new.(Liposomal delivery of dopamine?)

Imagine a world in which hundreds of groups worked in parallel, sharing all data.

We don't need just to imagine such a world.

John