I am appalled at the lack of scientific methodology demonstrated by your survey parameters.Â People with Parkinsons (PWP) are generally on a cocktail of medications to maintain a “reasonable” facsimile of a normal life.Â These medications do not effect the degenerative nature of the disease in any way; they merely mask the symptoms of the disease.Â Based on this fact, it is quite natural that the patient would “feel” better than in the past.Â Otherwise, what would be the sense it taking all the drugs?Â Had this been a valid survey, you would have to take the PWP off their drugs for a couple ofÂ weeks a year and then ask your question. Â
What you have created with your survey is merely pseudo scientific nonsense where the data proves your conclusion.Â Now either you realize this and are perpetrating a fraud just to sell books, or you have forgotten how to conduct a survey such that the data provides the conclusion. Â
I would ask that you voluntarily stop your survey and the spread of false information. Â
PWP need real facts not fiction.Â Life is hard enough with Parkinson’s, we do not need false hopes.Â Pedal your snake oil solutions somewhere else.
Thanks for your quick retraction of your “Survey”
Thanks so much for giving me the opportunity to clarify for everyone that the 2012 New Year Survey is not – I repeat not – a scientific survey. The survey asks two simple questions. The first asks people who currently experience the symptoms of Parkinson’s to report on how they are feeling overall now relative to this same time last year. The second question asks that another person in the same household who does not have Parkinson’s answer the same question.
The motivation behind the 2012 New Year Survey is not to prove anything or study anything. There are many reasons why the 2012 New Year Survey is not scientific. The sample is certainly not random. After all – the persons who will respond are persons who are connected in some fashion or another to the work of Parkinsons Recovery. This group of individuals are typically exploring a wide variety of therapies of one form or another that are offering sustained relief from their symptoms. Results will offer a snap shot descriptive picture of this highly truncated population.
The mission of Parkinsons Recovery is to document any therapies that people have discovered are helping them get relief from symptoms. I want people to realize that there are some people who are feeling better this year than last year.
Beliefs about the prospects of recovery have a huge impact on the recovery process. If we believe that Parkinson’sÂ symptoms will get worse every year – then I can assure you they will get worse. End of story.
Yes – it is true that I am a scientist but I am not designing a study here. My intent is to influence people’s attitudes and install hope for the coming year of 2012. Some people have been successful with reversing their symptoms. I want people to know the good news.
At some point I will design a study to evaluate recovery. The final design however will notÂ require that people go off their medications. The result of such a requirement could be potentially dangerous for some people. No one should simply stop taking their medications without close consultation with their doctors and other heath care providers.If people were surveyed who went cold turkey on their medications, they would report feelingÂ significantly worse.
As you point out, the good news about medications is that they do provide relief to some people over the short term. Over the long term however, symptoms tend to worsen, requiring higher dosages and the burden of possible side effects. The long term studies of people taking medications show a decline on average of about 3-4% each year.
Taking medications is one choice among many other choices that can be considered. People who are on the road to recovery typically explore a wide variety of therapies which often include medications (including diet, exercise and many others).
If this were a scientific study I would add a long list of additional questions toÂ control for confounding factors. For example, I would be asking about all of the therapies the respondents are currently undergoing in addition to a long list of other questions. Again, the results of the 2012 New Year Survey will simply describe the current situation of persons who happen to follow the work of Parkinsons Recovery.
Finally, I invite everyone over the holidays to scroll back to the several years of radio shows that I have aired with researchers, medical doctors, naturopaths, psychologists and and variety of health care professionals who talk about what is helping people get relief fromÂ their symptoms.
As a researcher, I am looking everywhere for information about what is helping people who currently experience the symptoms of Parkinsons get relief from their symptoms. If a therapy is helping some people I want others to know about it! I want people to know that there are many options to consider.
Again, thanks for your input. Most people who had the same thoughts would not have bothered writing me! I have no doubt that other people have likely had the same thoughts.
I also want to take this opportunity to preview a few of the free support services that are offered by Parkinsons Recovery. Incidentally, all of the information contained in my books has already been posted on the Parkinsons Recovery blog or is covered in one of my radio shows.
Parkinsons Recovery Newsletter
Receive free newsletters about our discoveries by adding your email when visiting the main Parkinsons Recovery website at:
Parkinsons Recovery Magazine
Articles by health care providers and persons with Parkinsons are published in this quarterly Parkinsons Recovery Internet publication. Obtain your free back issues by visiting:
I air a free weekly internet radio Wednesdays at 3:00 p.m pacific time. Every show is different, though the theme is always the same: what are people doing that offers relief from symptoms?
I have hosted guests from across the globe who discuss what is making a significant difference for people who currently experiences symptoms of Parkinsons Disease.Â Â The main page for the Parkinsons Recovery Radio Show is:
All shows are archived so recordings of all past shows will always be available and of course are free.
I regularly post information on the Parkinsons Blog where you will find the most current scoop. If you are reading this post – you have already landed on the blog!
Parkinsons Recovery Chat Room:
Participate in the chat room 24 hours a day. Access will always be free.
Symptom Tracker :
How do you know whether the therapies you are choosing to pursue help? Track your symptoms over time. The Parkinsons Recovery Symptom Tracker will always be free and available 24 hours a day (unless the server is down which happens on rare occasions).
Every time you answer the 39 questions from the Parkinsons Disease Questionnaire (39)
(which is a standard research instrument for Parkinsons) you will see a graph that shows your personal progress toward recovery. Any areas that need to be brought to the attention of your doctor will also be evident from your progress report.
Write me your questions. I am happy to research them or find people who can help with the answers. Again, this service is free.
Thanks for your interest in the work of Parkinsons Recovery. Important things are happening for everyone.
Robert Rodgers, Ph.D.