It's time for a new approachSM
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The Survey can be found at www.parkinsonsdatabase.net
Parkinson's Database CoalitionSM
Collaborating to find the cause.....and the cure
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UPDATE 23 FEBRUARY 2013
First off I must apologize for not being as present on Twitter and Facebook as I typically am. In September I sat down and began reviewing all of the information I have accumulated on Parkinson's disease over the last several years. I started making notes and reviewing some of the survey responses and making some comparisons. Six months later, out pops a book. I didn't want to focus so much on my experience with Parkinson's as so many books have because all of our experiences are different and I feel very much that mine has been a path of gaining knowledge, understanding and acceptance. Learning to live with Parkinson's is critical for all of us and we should share every aspect of that. It is good to read about and understand each individuals personal struggles with the disease but it really doesn't cut to the chase of what it is and the true biology of the disease. I chose to examine the many aspects of Parkinson's disease and take a much closer look at what we know and what we don't and put it understandable terms. I discovered that we really do have a lot of information on Parkinson's that is often overlooked, not well communicated or even flatly dismissed. It was an enlightening experience that will hopefully answer at least some of the many questions that we all have.
The chapters are as follows:
E-book Version available now at:
Parkinson's: Hidden Truths. A Glimpse Into the Disease.
Index and Survey copy are not included in the E-Book
The book also includes a complete copy of the Parkinson's Database Survey to make it easier for Parkinson's patients to complete the survey allowing them to pre-fill the answers prior to taking it. Much data has been collected but it is still far from what we need to isolate definitive causes and work towards a cure. All of your responses are greatly appreciated and your voice is heard. We will all do nothing but learn from this information and as we continue to accumulate data from all that are afflicted. The medical community will have no choice other than to listen. Treating only the symptoms of Parkinson's can no longer be the only option. It's time to find a cure for this and many other diseases. It's time to move forward and as I always say; "It's time for a new approach."
Here is the third party "Cover Blurb" from editor Rob Bignell (whom I cannot have completed this work without) who does not have Parkinson's and as many of us before has probably never considered the disease:
“Parkinson’s Hidden Truths”
The Premier Guide for Understanding and Living with the Disease
Every nine minutes, someone in America is diagnosed with Parkinson’s. Yet the disease largely remains a mystery – its causes vague, its diagnosis often delayed and made by process of elimination, the side effects of its treatment often confused as its symptoms.
Now comes “Parkinson’s Hidden Truths,” written not by a doctor or a science reporter but by a man who’s lived with the disease for years. Steven Keller shared his personal story of dealing with Parkinson’s, describes causes of and treatments for the disease, and examines how you still can lead a full life by adjusting to the disease’s physical and emotional strains.
Whether you or a loved one suffers from Parkinson’s, “Parkinson’s Hidden Truths” is the most complete and inspiring guide for your new journey in life.
......and my author bio (I hate pictures):
Steven Keller is a west coast native and currently resides in Washington State with his beloved Chow Chow Bubba and his Ragdoll Bailey. He was diagnosed with Parkinson’s disease in 2011 and although he accepted the diagnosis, he did not accept the lack of explanation. In early 2013 he founded the Parkinson’s Database Coalition and authored an anonymous survey for Parkinson’s patients to both express their voice and collect much needed data for scientific research. Much of his time is spent researching Parkinson’s disease, studying the biology of diet, chronic illness and related environmental impacts as well as communicating his findings to the Parkinson’s, scientific and medical communities. He has a firm belief that Parkinson’s disease and many other illnesses are not as mysterious as they appear and can be cured given the right support and direction.
"Parkinson's: Hidden Truths - A Glimpse Into the Disease" is in the final editing stage and should be available through Ingram books worldwide distribution network in April of 2014.
I hope it provides insight and understanding to both Patients and the medical community alike.
Be positive, productive and never give up hope.
Most importantly.......
Be well,
Steven
UPDATE 30 AUGUST 2013
Based on feedback and statistics we have updated our survey method. Although the response has been good, we have not gathered enough information to establish definitive causes. We are definitely headed in the right direction and have uncovered some interesting facts. We will continue to collect and review anonymous data submitted in an effort to help guide research and define possible causes as well as providing resources and information as always through Facebook and Twitter. Vigilance is critical for all of us as patients, physicians, researchers and caregivers. Working together we will get to the bottom of this debilitating disease.
I clearly understand that the survey is long and complicated, so it has now been divided into 7 sections. It has been clearly noted by the response statistics that the length of the survey is overwhelming. The response to the sample survey is ten fold to that of the official survey. It is also noted that most responses are incomplete due to the length. We remain steadfast in our policy of not asking for personally identifiable information or collecting URL data. It is still very important that this information comes from the people who know about PD- The Patients. The larger the response, the clearer the picture will become.
The Parkinson’s Database will continue to be a free resource for all, free of ads and solicitations. We are happy to add free informational links and resources to our website that meet our same criteria.
Stay positive and love each and every day!
SURVEY CHANGES:
Login restrictions on the survey(s) have been completely lifted and each section is now listed independently. You can take them in any sequence. Please only take each section once. If you have already taken the complete survey you do not need to complete the individual ones, your data will be transferred. You may still complete the full survey if you wish and receive e-mail updates when new surveys become available. The only significant changes by doing this are that you will need to check periodically on our site for new surveys and that we must increase our margin of error on responses.
Updated information and links to the surveys can be found at http://www.parkinsonsdatabase.net/index.php/survey
Update 3 March 2013
Another initial survey update. These are again just very initial results. It is very important to get a massive response to this survey. As more results come in we will see more very definitive commonalities emerge. The survey runs continuously as will the follow up surveys. We will release follow ups as the numbers grow. This will provide researchers with the largest accumulation of data in one place on Parkinson's to date. It is designed to provide constantly updated information for research. New questions are generated from data received and submissions. I will add any submitted questions. There is no reason not to ask them. What makes this unique is that the results are obtained from the patients who are living with this daily, not based on a short checklist filled out in a doctors office.
More initial impressions based on results.
100% Idiopathic cause
UPDRS score still = 0 at 100%
Neck, shoulder and foot pain are very common.
A huge majority consume products containing gluten.
75% have lived near crop areas.
Almost no one has received a copy of their water report.
Few Parkinson's patients smoke (consistent with studies)
80% perform their own lawn maintenance or participate in activities on groomed fields.
The rate of depression is at least 50% (we will be creating detailed follow ups for this)
Lyme disease does not appear to be a factor at all at this time.
Most require naps (more than 80%) to improve functionality.
A high percentage are only affected on one side. (consistent with findings)
Decreased arm swing and slowness of movement are the most common debilitating factors followed by walking difficulties.
Please take time to complete your surveys and encourage other patients to also. These results are very important to research. There are a lot of details that need to be examined to point research in a more definitive direction.
Update 24 February 2013
Survey results are beginning to trickle in. This is excellent as we are just beginning to piece together this puzzle. So far, we have just dumped out the box and started looking for the edge pieces. We have a long way to go to assemble this puzzle, but it can happen.
Some things that we've learned right away:
Positive:
Most are able to complete the survey without assistance.
No responders have demonstrated being more than somewhat incapacitated regardless of age.
A majority don't require a caregiver or a lot of assistance if they do.
Familial or Genetic causes appear to be very low so far.
Patients do not appear to be overweight as a whole.
Most people seem to love their kitty cat :)
Negative or questionable:
Not one respondent as of yet knows their UPDRS score. We have posted a link and an article on our facebook page. You should complete this yourself and ask your doctor to compare scores with you. We specifically asked this to find out if doctors were sharing this information.
Most feel pain associated with this condition. Aching neck and shoulder is most common, followed by feet and sides of back. There should be more focus on alleviating pain.
Gas heating has a very high percentile. (Carbon Monoxide should be monitored if you have gas heat as a precaution, this is becoming a legal requirement in many places for a reason.)
Very few have a copy of their CCR (Consumer Confidence Report) for water quality.
90% maintain their own landscaping (see our facebook page, there are numerous articles on fertilizers and pesticides.)
Remember that these are very preliminary results and that this is just a quick sampling of what we're seeing, but we want to share some of them with you as we get them. The complex review of this can be left to the researchers, but we will definitely give you information when there is a high percentile on a question. If you think of things that we have not asked or listed (if there's an article on facebook about something it's on the agenda, but don't hesitate to remind us anyway) let us know either on facebook, the forums or e-mail. We assure you, that question will get asked.
As a collective we really need to keep generating responses both from our end and yours. This needs to be the tune of hundreds of thousands, not hundreds for it to have a genuine impact and make a difference. We have seen web views and survey results internationally which is very important and gives us the opportunity to look deeper into demographics. We are taking this unique approach because quite frankly, all of the small isolated studies have yielded little regarding the cause of this disease. It's time for a new approach.
Please remember that we will never ask you for money or your personal information. Your answers are completely anonymous. We have added the 'Screen Shot' page to show you what we see on the back end of the survey and to give you an idea of how it works. Note that once a survey is active, our ability to alter it is extremely limited. Please notify us of discrepancies if you see them.
This survey will remain active continually and the follow up surveys will only be available by invitation to the e-mail address you supplied when taking the first one. It is more important to watch our websites, facebook and forums for survey updates as we do not send e-mails other than to notify you of a new survey. Just be certain to keep that e-mail active so that you can participate in future surveys as they are released.
We all need to collaborate and share to get to the bottom of this. So far this has not happened, but it really is time. We can't make a difference without each other. The most valuable thing you can do to help is to spread the word and please give us your suggestions and submit questions that you think are important to ask. If there are a million questions to ask to find the cause of this I guarantee you I will ask every one of them. It's time to get this one figured out. It's gone on far too long.
Stay with us for updates.
Update 21 February 2013
We officially launched our survey on February 20, 2013 via PRweb the release is here. We have gotten traffic from 16 different countries. Parkinson's is definitely no stranger to the world unfortunately.
We will release important information as it becomes available. Two expected results from the first set of responses to our survey were a UPDRS score of 0 (meaning that your doctors are not sharing with you) and the use of Teflon is 100%. As surveys are completed a much clearer picture will emerge. Anything set of responses that generate a high percentage will be researched, evaluated and receive detailed attention on follow up surveys and communicated to researchers. Don't forget that any questions you suggest will also be added.
It is imperative to all of us to collect this data. It's absolutely anonymous, it's free and perhaps even educational just to take it. There are so many things that we do every day without a second thought that could have potentially devastating effects on our health. We know the survey is long and somewhat complicated, but so is our struggle with this disease. We have tried to make it as easy to complete as we can. Additional surveys should be shorter and more specific.
We need to accumulate a massive amount of data here. In doing so, we will create a database that contains indisputable facts, even if the margin of error is 20%. With an estimated 10 million people worldwide afflicted with Parkinson's, we should be able to get at least 500,000 responses. That's only 5% of all people with Parkinson's. Please spread the word. Tell your doctor, your friends and anyone that will listen. Everyone knows someone with Parkinson's and it just shouldn't be that way anymore. Not knowing the cause of this has gone on far too long.
We will continue to do our part by providing information, results and getting the information to the right people. We have some strong connections to researchers and scientists. We will make sure that they hear us and help to push research in the right direction.
There are no politics involved here. No attempts to get money or personal information from you for solicitation. We genuinely want to find the cause and the cure for this debilitating disease.
It's time for a new approachSM
Update 18 February 2013
The survey is now active and accessible. Take your time and answer as completely as possible. FOLLOW THE INSTRUCTIONS. If you have questions contact us at survey@parkinsonsdatabase.net
Updates to follow.
Update 13 February 2013
The parkinsonsdatabase.net site is now live. We have been working feverishly to get everything in order. The Parkinson’s Database Coalition SurveySM has been tested and is functional. We are currently working on setting up the forums and going over the details on the initial survey before we launch on March 1st. We are taking the time to make sure we look over all of your Tweets, Facebook posts and links and review them for the current survey, as well as the upcoming ones. The WWW is an amazing tool, along with all of the confusing software that comes along with it, but we are getting there in fairly short order. Please watch for future updates.
Update 8 February 2013
We are 21 days from launching the Parkinson’s Database Coalition SurveySM. This is very important to the Parkinson's community. It will take a little time, but our goal is to collect mass data and to make it available to Researchers and Doctors alike. The initial survey will accumulate some important data.
The goal is to continually update this with input from Doctors, Researchers and Patients. This process will aid in narrowing down the possible causes and give the Medical Research teams some REAL data to go by. Once the Parkinson’s Database Coalition SurveySM is completed, we really want to hear your suggestions. I guarantee you that any question you suggest for a follow up survey will be included. There can be no stone left unturned.
We have intentionally not been fully inclusive on the first Parkinson’s Database Coalition SurveySM for a few reasons; however, we think that you will find it fairly comprehensive.
· First, we will not inundate you with 1000 questions. There are some key factors that must be looked at in regards to this ailment, so we want to look at those first.
· Secondly, we want to narrow down the responses to ask more specific questions (remember it is ALL anonymous).
· Thirdly, we want to get your feedback and include anything that we might have missed. We have done a tremendous amount of research on this, but there is no possible way we can know everything. As most of you know, every case is different. We are operating on the upside down pyramid theory so it is going to take some fine tuning to get to the source of the problem. Your input is more important than anything.
Our goal is to gather the information and make it available to Doctors and Researchers to enable them to provide better care, faster diagnosis and hopefully a cure. We are currently:
· Fine tuning the questions, much of which are based on your postings and new research articles;
· Testing the Parkinson’s Database Coalition SurveySM;
· Setting up the e-mail system with anonymous number assignments to enable you to receive updates;
· Configuring our hosting website (www.parkinsonsdatabase.net) for the Parkinson’s Database Coalition SurveySM which will include forums for both Physicians and Patients; and
· Preparing our media launch to bring it to patients that are less involved in social media so they too can complete the Parkinson’s Database Coalition SurveySM.
We are also working on adding links and pop-ups in the Parkinson’s Database Coalition SurveySM itself which will enable you to more easily answer the questions and give you definitions to some of the medical phrases and terminology used by Physicians and Researchers.
We do have some very direct connections to the Pharmaceutical, Biotech Patent and Research community, but have not yet taken them under advisement. We will not accept any direct funding from them to avoid any possible conflicts of interest. Funding of research is Phase 2 and is not yet open for disclosure at this time, with the exception of the fact that none of the research will be patient funded.
Our primary interest is to create an open conduit between Patients and Physicians and to focus on quickly moving forward to find a cure. We sincerely hope you will join us. Misunderstanding this condition has gone on far too long.
We will continue to post articles and information on Facebook and Twitter (Facebook is obviously more detailed). All of your posts and Tweets are very helpful.
Update January 2013
Progress is well underway in setting up this much needed voluntary and anonymous database. Any comments or questions are quite welcome. We are not seeking a status of non-profit. We are seeking to accelerate the process of finding a cure.
There is absolutely no cost to patients diagnosed with Parkinson's and if you are a Parkinson's patient we actually prefer your intellectual donations, as they are much more valuable to us. Technical assistance is also welcome.
The Parkinson’s Database Coalition SurveySM is formatted and completed. Copyright has been filed with the United States Copyright Office. We are covering legal requirements along with security and privacy issues before launch. So far we are on track and ready to get the Parkinson’s Database Coalition SurveySM online by March 1, 2013 so Parkinson's patients can begin completing the survey.
As data begins to compile and commonalities are found we will begin to release updates for patients to complete. These updates may be relative to specific chemicals, foods or other items listed in the initial Parkinson’s Database Coalition SurveySM. We must remain diligent in updating this information to better aid researchers and doctors to potential causes and treatments. The more people we have in the database, the better the opportunity we have to find a cure or prevention. For most of us, there is an urgency to compile this information as we live with this each and every day.
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