Many people who do not have PD have told me what PD is. It started with the first Neurologist I met and continued with many of my friends,other doctors and association members. The Neurologist was comfortable with the standard definition he learned in school and my friends went to the web sites of PD Association and major clinics and teaching hospitals . The descriptions and lists of symptoms are almost identical to the degree that some might almost see some plagiarism going on here. The Government has cut back on the amount of pain medication they will pay for because as my Neurologist, Motion Disorder Specialist and MD have said there is no pain associated with PD and similarly sleep problems are not caused by PD but are instead a side effect of the medication, it says so in the book. Neither of those understandings are correct.
You23andme has several thousand members that have PD. The first thing we did upon joining was to fill out extensive surveys. The result of those surveys gave the information to produce the chart shown here . The chart shows the relative importance placed on various symptoms by thousands of Diagnosed Parkies. You will note that it is pretty much the opposite of what you have been told
Personally I am tired of anybody who has not suffered from at least 10 years of actually having been diagnosed with the decease him /herself telling me what it is all about. They do not have a clue. The result is that we have an unending line of people with PD asking what is the cause of their sleeplessness etc. getting answers that are wrong, from people who are convinced that they know best.
It is time we all spoke out. I will show the chart to my doctors and we will have a discussion and I may be looking for new doctors soon. But enough is enough. We are not stupid or addled or demented. We just look that way. Now open and close your hands as fast as you can, now look up, now look down, now walk to the door,turn around and come back, now I am going to push you from behind. What you need is a sound machine beside your bed. If you exercise all day you will be cured.
Crap , it's all crap.