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01-22-2012, 05:50 PM | #11 | ||
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Senior Member
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I would have liked to have read the original paper to confirm this, but it's behind a pay wall.
The low survival rate given in the article may be due to people with multiple illnesses. Consider a person first diagnosed with PD then being diagnosed with an unrelated terminal cancer. His or her life expectancy is lower than that of the person with just(!) PD. The probability of having multiple illnesses increases with age. Dying with Parkinson's is not the same as Parkinson's being the cause of death. John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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01-22-2012, 06:26 PM | #12 | ||
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If you go to Pubmed, and search "Willis,A & Parkinson's" you can get the abstract.
It says it was a retrospective study of 138,000 beneficiaries of Medicare - are only certain people under Medicare? (I'm Canadian). And they examined the hospitalization diagnoses of patients with terminal PD - that would certainly restrict the group to less healthy people. It also says people are rarely hospitalized for PD. Like you said, John, dying with PD is different from dying of PD. I may be able to get the full article through work tomorrow, i'll check. |
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"Thanks for this!" says: | Conductor71 (01-22-2012), lindylanka (01-23-2012) |
01-22-2012, 06:41 PM | #13 | ||
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On the other hand, it is no accident that patients with "terminal" diseases who believe the doctors telling them that they have 6 months to live, will die on the scheduled date.. while other patients with the same prognosis who are not told their "prognosis" or simply believe that they will conquer their illness will actually survive. As far as I know, all religions in the world hold that life and death are in the hands of God or whatever mystery that rules our universe. And death will come at the right place and time and this knowledge is denied to man.
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Imad Born in 1943. Diagnosed with PD in 2006. |
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"Thanks for this!" says: | Conductor71 (01-23-2012) |
01-22-2012, 08:05 PM | #14 | |||
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Senior Member
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I'm with Rick; there are far too many variables going on. My biggest question is how do we know that these people ran straight to the doctor upon presentation of first motor sign. I imagine that many of these people may have gone a few years before presenting to a doctor, so that 6 years from Medicare may mean more. I am concerned that they break this down by race as well. Recent studies have highlighted how African-Americans diagnosed with PD receive substandard care. In addition, elders do not even know that PD is a disorder, so they don't go to doctor when motor symptoms first appear. I have no idea how the writer can extrapolate those numbers to us all. YOPD and late Onset are very different. I think that perhaps the biggest news that we have overlooked is highlighted below: Geography didn't appear to affect mortality in Parkinson's disease patients with one exception -- those living in urban areas known to have high levels of industrial manganese pollution were at almost 20% higher risk of death than those in low-pollution areas (hazard ratio 1.19, 95% CI 1.10 to 1.29 for areas in the top versus bottom quartile of manganese pollution). Willis and colleagues argued that these findings on metals pollution "calls into question whether continued exposure to basal ganglia toxins after symptom onset may accelerate the clinical course of idiopathic Parkinson's disease or be associated with the development of important comorbidities." This is a question I ask myself...should we be moving to less dense areas with fewer cars? |
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"Thanks for this!" says: | anon72219 (01-23-2012) |
01-22-2012, 08:58 PM | #15 | ||
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Senior Member
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A paper by Ishihara et al [1] (for which the full text is available) gives the following life expectancy (LE) figures for PwP compared with the general UK population:
"38 (SD 5) years for onset between 25 and 39 years compared with 49 (SD 5) years; 21 (SD 5) years for onset between 40 and 64 years compared with 31 (SD 7) years; and 5 (SD 4) years for onset age ≥65 years compared with 9 (SD 5) years." [1] "Estimated life expectancy of Parkinson’s patients compared with the UK population" Lianna S Ishihara, Anne Cheesbrough, Carol Brayne, Anette Schrag J Neurol Neurosurg Psychiatry 2007;78:1304-1309 doi:10.1136/jnnp.2006.100107 http://jnnp.bmj.com/content/78/12/1304.full John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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"Thanks for this!" says: | Conductor71 (01-23-2012) |
01-23-2012, 12:52 AM | #16 | ||
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Senior Member
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"they examined the hospitalization diagnoses of patients with terminal PD"
From Wendy's quote from the abstract, this seems to be the core definition - so what exactly is terminal PD? The words 'hospitalization diagnoses' also seems to me to be a certain sub-set out of all people with a PD diagnosis. Are they trying to redefine PD as a fatal disease, these figures don't look right to me. Out of our book group of 12 people we have nearly 200 years experience of PD between us, and the age range is from around 40 - 79. Not a huge sample I know, nevertheless it leaves a lot of questions. I would not be too dismayed by this, it certainly looks a bit atypical |
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01-23-2012, 07:03 AM | #17 | ||
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You are right on target. I have had PD for 15 yrs now! I was 30 when diagnosed. This "study", or whatever they want to call it should be given NO credence by the Parkinson's community other than better coordinating care with other members of the patient's family and doctors to control comorbidity and other factors where the patient may not be able to care for themselves as well or communicate their needs. That leads to a downward spiral. Shame on any journal that pushes this off as credible! It does a great diservice to the Parkinson's community.
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01-23-2012, 09:52 AM | #18 | |||
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In Remembrance
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Medicare is a somewhat limited group to draw from. If I understand correctly, it is limited to those over 65 or to those who have drawn a disability check for over two years. If so, then the results are relevent only to Seniors and the longterm ill, are they not? I would also question the effect of the "Seniors" group in that they came of age when the Chemical Revolution was in full swing.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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01-23-2012, 01:37 PM | #19 | |||
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It is interesting that the morbidity seems associated with manganese exposure.
I wonder if they were treated with PAS? If not, how would treatment affect these statistics? http://www.purdue.edu/uns/html3month...manganese.html |
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01-23-2012, 04:23 PM | #20 | ||
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In Remembrance
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so i added a profile but it's so long i will have to cut it down or remove it after awhile. i want people to know that you still have the power to control some parts of your life and stats are not always true. many people die in their 80s.
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | imark3000 (01-24-2012) |
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