The American Prevalence of Parkinson's disease
 

Parkinson's prevalence estimated by a state registry

PubMed, PMID: 15022187 [PubMed - indexed for MEDLINE], Strickland D, Bertoni JM, Epidemiology Section, Department of Preventive and Societal Medicine, University of Nebraska Medical Center, Omaha, Nebraska, USA. Daniel.Strickland@KP.org

http://www.ncbi.nlm.nih.gov/pubmed/15022187

A solid understanding of the descriptive epidemiology of a disease is essential in etiologic investigations; this includes prevalence and incidence, as well as groups within the larger community who may have noticeably lower or higher rates. We ascertained the usefulness of a non-traditional registry in describing Parkinson's disease (PD) patterns in a community. A passive surveillance PD registry in Nebraska began data collection on 1 January 1997. All physicians were required to report PD diagnosis, pharmacists reported new prescriptions of anti-PD drugs (PD cases were confirmed later with the prescribing physician), and there was a patient self-report mechanism. The overlap of reporting by the sources allowed estimation of the number not reported by any source, using the statistical technique "capture-recapture." As of January 2000, the Nebraska PD Registry had reports of 5,062 PD patients. The number not reported by any Registry reporting source was calculated to be 117, leading to an estimated total of 5,179 cases and a prevalence of 329.3 per 100,000 population. Tabulations of age- and gender-specific prevalence rates, as well as county-level estimates, allow examination of areas of elevated or lowered prevalence. The combination of a passive surveillance system and capture-recapture technique presents a useful method for epidemiologic description, and more traditional survey methods could benefit by including capture-recapture capability. Copyright 2003 Movement Disorder Society





THE AMERICAN PREVALENCE OF PARKINSON'S DISEASE

23rd January 2010 - New research, Neuroepidemiology [2010] 34 (3) : 143-151 .Annals of Neurology [2009] 66 (6) : 792-798 (Wright Willis A, Evanoff BA, Lian M, Criswell SR, Racette BA.) Complete abstract

http://www.************/parkinsons.d...ews/100123.htm Link does not work. Internet search title of this item to see it online at the website.

The prevalence of Parkinson's Disease in the U.S.A. has been found to differ enormously according to location, age and race. The prevalence of Parkinson's Disease in some counties was found to be nearly 12 times higher than in other counties. Urban areas were more affected than rural areas. Elsewhere, the opposite is usually true. Parkinson's Disease is far from being evenly spread across the U.S.A.. The study revealed a concentration of Parkinson's Disease in the Midwest and Northeast regions of the U.S.A.. Nebraska was previously shown to be the worst affected Complete abstract. In the over 65s there was found to be a prevalence in some areas of 1 in 7, making it in those places a common medical disorder. Whites were affected with Parkinson's Disease about twice as much as Blacks and Asians, though this difference is progressively decreasing, especially between Blacks and Whites. For more current news go to Parkinson's Disease News.

For more details of the above research see:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865395/

In particular, see the maps showing the different rates of PD across the US.

Explain the differences and, in my opinion, we are much closer to beating Parkinson's.

John

We're breathing it...
 

John,

I agree that the map is quite telling. My theory is that for many of us in urban areas the culprit is not pesticides but the air we breathe. A substance referred to as MMT is in our gasoline as a substitute for lead (ironically) and it's main component is Manganese. It is fine particulate matter that we breathe in and that easily passes the blood brain barrier. Now check out the research on Pubmed for the incidence of Parkinsonism in populations near Manganese production factories and in highly polluted areas like Mexico City.
There is actually an article tying MMT to Alpha-Synuclein aggregation with brain damage beginning in childhood! I have written embarrassingly long posts on this if you search the archives.

When I look at that map it further cements the MMT theory for me. Look at the rate of prevalence in the LA region for example vs. the rest of California and the entire Western region. LA is legend for its expressway traffic jams. Though with the population rate, why isn't PD more prevalent? I am guessing the dry air has a lot to do with it. Look at rates for Seattle. Fewer people but moist air. Not exactly scientific, but I am thinking we could easily apply weather phenomenon and scientific methodology to the theory. Does anyone else find this plausible? Any other ideas in looking at the map? I am not sayin it is just MMT but air pollution in general...incidentally my childhood home backed up to an expressway.

This is all keeping in mind the multiple hit theory of sporadic PD...another person may find their environmental trigger is something entirely different if they have one at all since one can acquire the disorder through genetics alone.

Laura

maps
 

Hi John, Laura and all,

I find these maps of incidents or prevalence really interesting. They seem to be somewhat concrete data in a PD world otherwise full of questions and uncertainties.
Although I grew up in the Chicago and then the NYC suburbs (both high red areas of prevalence), I have spent my adult life on the west coast and know that geography best.
I focused in on the one and only red area in California on the first map.
I have lived close to that area, that is south of Lake Tahoe and north of Yosemite. It looks like it might be Alpine county. It is very rural and in the mountains and almost pristinely clean.
The only natural landmark there that comes to mind is there are several hot springs in that area- the big ones Markleeville and Woodfords. Perhaps the water in that area has certain minerals or impurites?? Also, that area got populated during the silver rush and there are/were silver mines nearby. Perhaps silver in the water?? All speculation of course.
If only we could cross reference all the data that is out there.:Hum:

We hold answers too...
 

Victorialou,

Thanks for sharing your background. This is precisely the sort of "fuzzy" data that researchers need to get a much quicker grasp of what our shared experiences or exposures might be. We all need to be in that National registry for PD and MS that can run queries or analyze.

What makes this all the more complex is that most likely we all have very individual paths but meet at the same watering hole so it is hard to say with any confidence that it is due to just one environmental thing in an area. It could be that your PD is more due to genetics (it can be just that) or maybe a concussion or viral infection when you were younger...I'm not even sure we need an environmental toxin component.

What I don't like is how we living with all these clues are all but ignored except for drug trials because that is where the profit lies. No one makes any money testing us for trace metal levels. I think they know enough environmental triggers at this point so are we not given a battery of tests to look for pesticides, manganese and other trace elements or metals in all of us? Gee, this may actually lead to putting some of the puzzle together but no one bothers with meta data it seems...

A few other PD correlates to add and extend the map globally. PD seems to occur most frequently at higher latitudes....rare to find it below the equator. I think in US, the highest rate of incidence is in Minnesota (some one correct me if I am wrong). In Europe, it is Scandinavia that is hit the hardest. We hear that more men are diagnosed than women, but in Japan it is just the opposite. I think by studying these oddball or anomaly things we can find a lot of answers too. :p

Laura

In addition to local factors and genetics, my hunch is that there is a climatological connection.

The Parkinson's distribution maps hint at a relationship between prevailing wind direction and PD. In itself this is not causal. However, one possible causal mechanism follows from the wind affecting surface ozone levels [1]. Especially in summer, these seem to be distributed in a similar way to PD. In turn, ozone levels affect nitric oxide levels in the body [2]. NO may be implicated in Parkinson's both directly [3] and indirectly, by increasing the permeability of the BBB [4].

Proper statistical analysis is required.

[1] http://acdb-ext.gsfc.nasa.gov/Data_s...ce/gif/cl2.gif [Shows tropospheric ozone levels, not ground levels.]
[2] http://www.ncbi.nlm.nih.gov/pubmed/17662977
[3] http://www.ncbi.nlm.nih.gov/pubmed/16005074
[4] http://www.liebertonline.com/doi/abs...08601300185223

John

Inuit in northern Canada have a high rate of PD. And a low rate of heart disease, even those who traditionally lived on meat and fat and fish, with no fibre, no grain, no vegetables and no fruit.

All of this is madness. They bring out these maps showing that one place has 12 times more PD than another place, but the research money goes to finding a new flavour of agonists or new packaging for sinemet. I repeat again: I am waiting for the cherry-flavored sinemet in bubble-gum format, with those coupons you can collect to get free gifts and neat stuff.

Is there an epidemiologist in the house? A medical detective to unravel the mystery? Like Dr. Irving Selikof, who was a simple GP in a small town when he tracked down the reason so many of his patients had forms of cancer such as mesothelioma. He tracked it down: asbestos. He went on to become a top researcher at Mt. Sinai hospital in New York. But when he made the discovery, that resulted in asbestos being outlawed around the world, he was a simple family doctor in Patterson, New Jersey. He paid attention to his patients and, single handed, found the link with asbestos, and then used maps such as these to hunt down every source of asbestos blowing in the wind.
Epidemiologists have a different set of skills; they hunt down links; it's not the same gang as the pill designers. Those maps go way beyond co-incidence. Is there any medical curiosity left out there at all? Are there any epi - experts taking this on?

I too would like to see more epidemiological efforts.

Let's accelerate existing efforts: using the web, Excel and our own unique experiences we can become epidemiologists. We probably won't be the best, but we can become good enough to make a difference.

John

Can do attitude
 

John,

Liking the idea of this...we have broached doing our own studies right here in this forum.

I am a librarian and like everyone else do not want to waste away while the powers that be do nothing. Count me in.

Laura

too many wrong diagnosis?
 

i believe the PET scan is the only way to tell for sure of this illness,
and the meds arent a cure....
the MRI is good for ruling out tumors etc...
so we need the PET scan to know for positive...

Here are links to two maps of the US which show county by county values for:

Air quality
http://www.creativemethods.com/airqu...ted_states.htm

Incidence of Parkinson's
http://www.ncbi.nlm.nih.gov/pmc/arti...395/figure/F2/

What conclusions do you draw?

John

Wow, John. I didn't need any convincing on this connection, but the visuals do have more impact in this case. I hadn't thought to seek this out, but it looks like if we were to overlay the air pollution rates over the PD hot zones, it would be easy to convince others (the power players) that we should be researching this a lot more.

I think somewhere earlier in this thread we mentioned how an area's climate may make a difference. It seems in dryer areas, there is less disease prevalence. Note: Prior to 2006, most studies on air pollution measured mortality and morbidity from cancer and cardiovascular conditions.

I don't know about the big two:pesticides and well-water? The two main pesticide culprits a.k.a. Rotenone and Parquat; I have yet to see studies of chronic or acute exposure to any of these priming the human brain for PD or AD.

From 2006 study acknowledging that air pollution causes brain damage:

Morphometric analysis of the CNS indicated unequivocally that the brain is a critical target for PM exposure and implicated oxidative stress as a predisposing factor that links PM exposure and susceptibility to neurodegeneration.

Brings to mind those seminal books written in the 60's that I should have been required to read but or sought on my own but ignored for whatever reasons....looks like I need to revisit both Future Shock and Silent Spring.

Whatever are we doing to ourselves?

Laura

pesticides and drugs
 

OK SCRATCH THE FIRST POST. I issued myself a skimming ticket.

The second map is something else, east showing much higher than west, even tho the west had some large areas of poor air quality. This seems to reflect industrial pollution.

But my first neuro at my first visit with him said. That's from all the drugs we took in the 60s. He said "we".

Does this also need to be overlaid with population density, and industrial activity, as Paula suggests........

But interesting anyway....

The paper by Willis et al [1] contains, amongst other things, maps at a county-by-county level showing the distribution of the incidence and prevalence of Parkinson's among Medicare beneficiaries.

Incidence: http://www.ncbi.nlm.nih.gov/pmc/arti...395/figure/F2/

Prevalence: http://www.ncbi.nlm.nih.gov/pmc/arti...395/figure/F1/

There is a way to use the difference between these two maps to extract more information. Let me explain how this can be done.

With a disease such as Parkinson's, where there are few, if any, people cured, we would expect the prevalence to be directly related to the incidence. For instance, if the average PwP lives 10 years after diagnosis, the prevalence will be approximately 10 times the incidence.

As far as the maps are concerned, we would expect high incidence counties to be high prevalence counties and low incidence counties to be low prevalence counties. There will always be statistical "noise", so a certain variation is to be expected. There are five levels on the maps (dark green to red). I suggest that any difference, up or down, of at three levels is worth looking at.

The annual incidence figures are for 2002-2005. People don't usually know when they "caught" PD, but most feel that the onset was several years before the first presentation and even longer before the first diagnosis. So, to be a statistic in 2002-2005 we need to look at events in the period from, say, 1995-2005.

What I'd like all of you with knowlege of the US to do is this:
- open both maps, look at areas you are familiar with;
- identify any counties with at least a three step difference (up or down);
- find the population of the county, prioritize the counties with populations above 100000;
- see if you can find any events that may explain the change.

The sort of thing I have in mind are:
- a mine opens or closes;
- fluoride is added or taken away from tap water;
- a pollution event occurs, possibly up-wind;
- a new road is built;
- major lay-offs occur.

Why am I asking you in the US to do this? Simply because you have the best statistics. I don't know of any other paper with the detail of the Willis paper. Also, your county system seems to have just the right granularity for this problem.

Happy hunting. We may just get lucky.

[1] "Geographic and Ethnic Variation in Parkinson Disease: A Population-Based Study of US Medicare Beneficiaries"
Allison Wright Willis, Bradley A. Evanoff, Min Lian, Susan R. Criswell, and Brad A. Racette
Neuroepidemiology. 2010 April; 34(3); 143-151.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865395/

John

More Data
 

More prevalence data. This time county-by-county data for South Carolina.

See:

"Parkinson's outreach and education training (POET) planning grant, final report, November, 2003"
Forti E., Bergmann K., Salak V., Wall K, Fleming T.
Medical University of South Carolina
http://coa.kumc.edu/gecresource/samp...sonsReport.pdf

The data was collected from "UB-92 billing data".

Does anyone with local knowledge see anything interesting?

John

we listen to doctors
 

who have never had PD - and tell us to use pills they have never sampled, but most doctors wont take chemo!
???
PD is a genetic predisposed heart problem to heavy metal toxicity, ie; mercury
http://www.patientsmedical.com/healt...y/default.aspx
http://www.sunherb.com/dental.htm
http://www.orthomolecular.org/librar...304-p147.shtml

Not so definitive scans......
 

A few short years ago these tests were said to be definitive, and touted as utterly accurate. I am one of the people with a negative scan (done in 2006). There have been others in the same position. Thanks Shetawk for posting these. You do not know how much it means to see this in print.

---------------------

The relative passages from Shetawks posts (my bold) from parkinson.org and PDF:

Recently, in studies that have attempted to diagnose Parkinson’s early in its course, researchers have found that a subset of patients thought to have Parkinson’s disease have turned up with negative PET or SPECT scans. These patients do not seem to develop the progressive symptoms of Parkinson’s disease. These findings are humbling, and they lend credence to the importance of following patients over long periods of time to ensure both accurate diagnosis, and also appropriate treatment.

----------------------------------------

In the study of early Parkinson’s, the overall accuracy of DaTscan was equal to that of the accuracy of a physician’s diagnosis: both were 84 percent.
For people with more advanced PD, the overall accuracy of DaTscan was likewise identical to that of a physician’s diagnosis: both were 98 percent.

The CDC has produced a table showing, state by state, the number of deaths reported to be, at least in part, due to Parkinson's in the US in 2010 [1]. The data is shown in the Appendix. The rate values are per 100,000 of population.

Using this data and the R programming language map package, I've made a map showing the age adjusted PD mortality rates across the US.

Attachment 7512

Parkinson's is well known to be under-reported as a cause of death. But, this is not too much of a problem if we confine ourselves to relative differences, i.e why does state A have 20% higher figures than state B? (Of course, inconsistencies between the reporting conventions of states will affect the usefulness of the numbers.)

It is useful to compare the CDC figures with those in the paper by Willis et al. [2], which has already been mentioned in this thread. The Willis paper reports prevalence and incidence figures, not mortality rates. However, as a rough measure, for a disease like Parkinson's one would expect the annual mortality rate to be similar to the incidence rate. This is because the number of people joining the pool of PwP should be similar to the number leaving it.

I am surprised by the apparent only limited similarity between the two distributions.

Some explanation can be put down to:
- both sets of data are age standardized, but the Willis results are also race standardized.
- the Willis paper is based on Medicare records, which affects the age distribution of its data.
- the Willis paper is on a county by county basis, perhaps a whole state is affected by just a few high density counties.
- for the smaller states the numbers are low, e.g. Delaware reported 57 PD related deaths, suggesting that there could be significant differences from year to year.

Why does this matter? It matters because spatial differences in the rate of Parkinson's offer a good way of identifying environmental factors in the etiology of PD.

References

[1] http://www.cdc.gov/nchs/data/dvs/dea...10_release.pdf

[2] "Geographic and Ethnic Variation in Parkinson Disease: A Population-Based Study of US Medicare Beneficiaries"
Allison Wright Willis, Bradley A. Evanoff, Min Lian, Susan R. Criswell, and Brad A. Racette
Neuroepidemiology. 2010 April; 34(3); 143-151.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2865395/

John

Appendix: CDC data for 2010 PD mortalities
state,number,rate,ageAdjustedRate
Alabama,342,7.2,6.9
Arizona,489,7.7,7.4
Arkansas,206,7.1,6.4
California,2238,6.0,6.5
Colorado,305,6.1,7.2
Connecticut,237,6.6,5.3
Delaware,57,6.3,5.8
District of Columbia,26,4.3,4.6
Florida,1755,9.3,6.7
Georgia,472,4.9,6.3
Idaho,123,7.8,8.3
Illinois,909,7.1,6.9
Indiana,485,7.5,7.2
Iowa,320,10.5,8.1
Kansas,256,9.0,7.9
Kentucky,296,6.8,6.8
Louisiana,265,5.8,6.2
Maine,137,10.3,8.2
Maryland,389,6.7,6.9
Massachusetts,459,7.0,5.9
Michigan,816,8.3,7.4
Minnesota,512,9.7,8.9
Mississippi,174,5.9,6.1
Missouri,477,8.0,7.2
Montana,94,9.5,8.1
Nebraska,183,10.0,8.7
Nevada,149,5.5,6.6
New Hampshire,116,8.8,8.0
New Jersey,645,7.3,6.5
New Mexico,171,8.3,8.3
New York,972,5.0,4.5
North Carolina,636,6.7,6.8
North Dakota,61,9.1,7.0
Ohio,920,8.0,6.9
Oklahoma,249,6.6,6.4
Oregon,356,9.3,8.3
Pennsylvania,1184,9.3,7.1
Rhode Island,96,9.1,7.1
South Carolina,381,8.2,8.3
South Dakota,86,10.6,8.3
Tennessee,435,6.9,6.9
Texas,1492,5.9,7.6
Utah,170,6.2,8.9
Vermont,70,11.2,9.6
Virginia,520,6.5,7.0
Washington,514,7.6,7.9
West Virginia,142,7.7,6.2
Wisconsin,492,8.7,7.4
Wyoming,37,6.6,6.8

This map may also be useful to you: http://www.npr.org/news/graphics/201...0/44.42/-72.01

Added for the sake of completeness. I think the maps showing variations in prevalence across the US, in the paper by Willis et al. (2010), are more useful.

Reference:

[1] "Prevalence of Parkinson’s disease across North America"
C. Marras, J. C. Beck, J. H. Bower, E. Roberts, B Ritz, G. W. Ross, R. D. Abbott, R. Savica, S. K. Van Den Eeden, A. W. Willis & CM Tanner on behalf of the Parkinson’s Foundation P4 Group
npj Parkinson's Disease
volume 4, Article number: 21 (2018)
Prevalence of Parkinson?s disease across North America | npj Parkinson'''s Disease

John

Added for the sake of completeness:

Willis et al. have written another paper on the geographical prevalence of PD in the US. They find [1]:

"We identified 27,538,023 Medicare beneficiaries that met our inclusion criteria, of whom 392,214 had a PD diagnosis in 2014. ... Crude prevalence varied from 845/100,000 in Minnesota to 1781/100,000 in New York. The top five states—New York, Connecticut, Florida, Pennsylvania, and Rhode Island—contained 20.7% of all Medicare beneficiaries diagnosed with PD in our sample. After adjusting for baseline differences in race, age, and sex, New York, Illinois, Connecticut, Florida, Pennsylvania, and Rhode Island remained the states with the highest prevalence."

Reference:

[1] "State-level prevalence, health service use, and spending vary widely among Medicare beneficiaries with Parkinson disease"
Sneha Mantri, Michelle E. Fullard, James Beck & Allison W. Willis
npj Parkinson's Disease 5, Article number: 1 (2019)
State-level prevalence, health service use, and spending vary widely among Medicare beneficiaries with Parkinson disease | npj Parkinson'''s Disease

John