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Dear Jim Wow, the contents of your article are amazing (it is interesting that I am a Parkinson's specialist who continues to learn about Parkinson's from the patients themselves). I just learned about this fantastic "Simulation" idea from Ray yesterday. You have brought up two very important issues. a) PD does cause pain What a coincidence. I just wrote an article on "Painful part of Parkinson's" last week, to be published in the Malaysian Parkinson's website. Even I myself learned a lot of new facts about pain in Parkinson's when I was writing this article (ha..ha..ha..). I fully agree with you - you are right to say that the pain of Parkinson's is neglected. b) PD does not directly cause death You brought up an extremely important point that has changed my mindset about mortality and Parkinson's. PD is always described to be not a killer illness. With your explanation, I think that I have to revise my statement - that PD is occasionally a killer illness. Why is PD an occasional killer? With the advances in PD medications and DBS, most PD patients usually do relatively well throughout their lives. In fact, most PD patients die of other unrelated illnesses such as stroke, heart attack, etc. However, in some of the more aggressive forms of PD, a proportion of PD patients develop lung infection or fatal falls. In these cases, the doctors usually describe PD as a "contributing factor to death" while the lung infection and head injury are described as the "direct cause of death". In medical practise, very often, doctors like to play with terms. In reality and practical terms, in the above cases, actually the direct cause of death is PD - it is an occasional killer illness. But, as I mentioned in my previous email, for the majority of PD patients who do not die of PD, these patients cannot escape from lifelong physical disability and suffering. Thanks for the excellent comments. I have to get back to my work (a patient is waiting outside my clinic). We will discuss this matters again. Dr Chew > Date: Thu, 20 Aug 2009 20:32:43 +1000 > From: [log in to unmask] > Subject: PD as cause of death > To: [log in to unmask] > > Dear Dr Chew, > > I was in much pain today, as my piformis muscles were in a state of contraction > for over five hours, thus giving rise to "Piriformis syndrome". in which the > sciatic nerve is compressed or otherwise irritated by the piriformis muscle in > the buttocks, causing pain, tingling and numbness in the buttocks and along the > path of the sciatic nerve descending down the lower thigh and into the leg. It > gives rise to intense pain. > > I tried relieving it by taking 1000mg paracetamol. Then four hours later, when > the pain was still nearly unbearable, I took another 1000mg. AFter 5 hours from > when it started, the pain lessened to where it was bearable. > > The day before yesterday, I had an episode of intense dyskinesia (unwonted, > uncontrolable writhing) of the head and ncek, arms and legs. This lasted for > over six hours. > > I mention thse two incidents to make the point that most conventional sources of > information about PD state that PD "does not cause pain". If these episodes were > not painful, I am no judge of pain. > > I think that contiued exposure to intense pain, and the wearying muscle strain > of dyskinesia eventually "wear out" the body. It fills me with anger when people > who have never experienced the pain that PD can cause, make pronouncements that > "PD is not painful." > > Another "myth" is that a death of a person with PD is not a death "caused by" > PD, as distinct to death "accompanied by" PD, I can . give a gaphic picture of > what I think about that. > > Imagne that a man falls from the top of a 100 foot tall building, and dashes > himself to death on the pavement. Are we expected to believe that it was only > the last foot of his fall that killed him, and that the previous 99 feet > contributed nothing? Similarly.are not the years o sufffering caused by PD > before a person's death a contributing factor to his death? > > I belive that PD a tleast contributes to the death of a person, if not causes > the death. In Australia in 200, Parkinson's Disease accounted for 20% of all > deaths due to Diseases of the nervous system and 0.8% of all deaths registered > in 2007. There were 1,109 deaths due to this disease, with a median age at death > of 82.7 years. The number of male deaths (672) due to this disease was higher > than the number of female deaths (437). This was similar to the overall trend > for the past 10 years. > > The figure of 1,109 is, in the o[inion of the Central West (of NSW) Parkinson's > Disease Research group, only 10% of the real figure, and is only the data which > is given as the primary cause of death by the doctor signing the death > certificate. PD as a contributing factor, or PD as a pre-existing condition, is > not counted. Then you have the occasion where the cretifying doctor is not aware > of the patient's PD, and so is not in a position to include it on the death > certificate. > > In order to get a clear picture of the death statistics for PD, we in Australia > will be conducting a campaign: > 1. To try and get PD recognised as a legitimate primary cause of death > 2. To try and have it made compulsory to enter onto a death cetificate, that the > person had a condition of PD. > 3. If PD is present and cannot be ascertained to be the primary cause of death > by the person certifying the death, then PD should be entered as being a > contributing factor. > > Jim > ------------------------------------ > Dr J. F. Slattery PhD Soc Sc > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn _________________________________________________________________ Share your memories online with anyone you want. http://www.microsoft.com/malaysia/windows/windowslive/products/photos-share.aspx?tab=1 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn