How do you define "Cure"?

[CPT_Helen]

What does a Cure for Parkinson's mean? Is it reduction of or removal of symptoms? Is it stopping the disease? Is it reversing the disease? or is it never developing the disease in the first place?

[Hidden]

Its a personal view to me it means (for any chronic condition) to live completely symptom and impact free even with the disease.

[Lindylanka]

'Cure' for me means two main things. First, something that will halt/reverse Parkinson Disease in people who have it now. Second, that in the future no-one will develop it, that it will be halted before damage happens, so it is no longer something awful, just something there was a potential for that can be averted.

[CPT_Helen Partner]

I believe a cure is a series of steps: the first step is ensuring that new treatments are developed, the second is to halt the condition in its stride, the third is to reverse the condition, and the fourth is to prevent people getting the disease. I would be fascinated to hear other people's views.

[Hidden]

You are right I am sure, however what you describe is something I personally feel is hugely ambitious for any chronic condition and in a future I won't know. For some and this includes me it is not about a cure (I am not saying I don't believe that we should aim any lower than the ultimate) its about an acceptable status, as my friend Jamie says given my illness status what is the best I can hope for (although I did question his used of the word hope) It comes down to individual treatment and wellness programs, about today, tomorrow, next week, next month... but I acknowledge this with the backdrop of some knowledge that the research is taking place that the solutionists are working passionately and boldly, with patients in mind. I know this is in part true as I make sure I am an influencer in that process. Sorry this swung wildly off topic. Well done with the site, it is great

[RayW]

For me to be cured of Parkinson's would mean very simply not having it any more. Anything else is treatment and management.

[CPT_Helen Partner]

This is fascinating - a cure does mean different things to different people - all views welcome.

[Margaret1]

A cure for me would mean not having PD any more. However, I feel this will take a while to achieve....it is more realistic to hope for something to slow down or possibly halt progression, or for medication to become more effective, with less distressing side effects. So that we can live with PD more easily.

I am also interested in the effects of exercise, music and dance on PD symptoms and the possibility that these may slow down progression as well as improving well being.

[CPT_Helen Partner]

I found your response fascinating, and thought provoking - thank you very much Q

[Margaret1]

Of course I would like there to be a cure, as soon as possible!

I think like you, that it will probably come about in a series of small steps as you describe above.Until then we need to do all we can to keep ourselves as fit as we can...hence attention to exercise and also creative activities and being involved etc (bit off topic I know).

[pkell]

Pie in the sky. It isn't something I really think about any more. Things are rarely "cured". Having realistic expectations is for me a more hopeful place. I can envision a future where I do not progress, or even one where I am able to recover some my old self. My biggest hope is that they will learn to diagnose it and stop the progression. With those two possible discoveries I will not fear for my children and grandchildren.

Cure is tricky. They have eradicated Small Pox, but they haven't cured it.

[DavidGreaves]

I think cure has to be seen as a complete repair, so that things are returned to normal. When I take my bike to the cycle shop with malfunctioning gears and the mechanic says, 'That's cured it', I would expect it to function perfectly. Having said that, I can understand why most people would accept a patch on their inner tube not a new inner tube.

[CPT_Helen Partner]

great analogy.

[scarab1-2-3]

i WAS DIAGNOSED P.D. NEARLY 10 YEARS AGO I TRIED SEVRAL THINGS ACCUPUNCTURE HELPED THE MOST BUT CANNOT CURE IT MY SPECIALIST DR. I HAVE GREAT RESPECT FOR BUT DOES NOT BELEIVE IN ALTERNATE METHODS, , HIS CHOICE & THAT I RESPECT BUT AFTER MUCH STUDYING P.D I THINK IT CAN BE CURED BY NUTRITION ESPECIALLY JUST AFTER DIAGNOSIS, A CURE TO ME WOULD BE REPAIR & HEALING OF THE DAMAGED CELLSA NEW GROWTH OF NEURO CELLS REPRODUCING DOPAMINE NO MORE TABLETS 6 MONTHS RECOUPERATING THINKING IT WAS JUST A BAD DREAM, I COULD BE JUST A DREAMER, BUT I PERSONALLY BELEIVE THIS THAT IS THE CURE WE MUST ALL STRIVE NO MATTER WHAT AGE WE ARE

FROM SCARAB 123

[JanellenGrimaldi in reply to scarab1-2-3]

Right on! I myself am using a nervine herbal treatment and music therapy.. tried acupuncture, but it is a long, drawn -out, expensive in the long run, dubious "cure".

[CPT_Helen Partner]

CPT has been exploring the role of the gut in Parkinson's as we believe that gut hormones provide a fascinating range of treatment targets. we will have some feedback from the Exendin study in a couple of months, (Exendin being a diabetes II treatment, a GLP1 agonist) that we believe may be relevant for use in Parkinson's.

[Merlinsbeard]

I'm not sure I like the word cure. We all had Parkinsons before we knew it and the damage was already done, i.e we had lost 80% or so of our dopamine producing cells. So a first step has to be research into the causes and then an affordable screening test. So a cure would prevent future patients developing the condition and render current patients disease free. So we are looking for prevention and cure. They won't be the same thing.

[CPT_Helen Partner]

There is a huge amount being done to identify biomarkers which will certainly help in the creation of a screening test. The Cause discussion is very interesting and links very closely into the individuality of the condition, as well as the work being undertaken in genetics. I think disease modifying treatments are a priotity to halt progression. Q

[BunnyTheOctopus]

In my book, a cure would make me feel well.

I didn't mind the shuffling, I don't mind the dyskenisia although it is quite bad at the moment, but that is because I went to see The Manfreds - 5-4-3-2-1, Do wah diddy, Might Quin, Pretty Flamingo,...

But I often feel ill, it is not something that is definable. it seems to affect my motivation, my bowels, my stomach, my balance lots of different symptoms none of which are all that bad, but a few of them together causes me to feel i am trapped inside my own body unable to function normally.

Cure this please

[Briony]

To me "cure" means being free of all our PD symptoms and stopping the cell rot. This is a distant dream that will not benefit me; I have had PD too long. I am a realist and believe in getting the most out of life now, but I hope that those of you who are recently diagnosed will benefit one day.

What we need now is to raise awareness of the full horror of this disease and attract the funding we deserve. PD gradually robs us of all our means of communication and the sicker we become, the more we hide away. - so th public does not see PD at its worst and the misconception that it is simply a geriatric shake and a shuffle persists.

Raising awareness is the first step to finding a cure.

[Joealt]

No more symptoms. No more obsessing. No more meds..

[JanellenGrimaldi]

To answer the question: All of the above. And yes, no more meds...side-effects can be worse than this disease! I hope to see better ideas for a "cure" than the bandaid approach of just throwing meds at the symptoms!