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-   -   Surnames in PD (https://www.neurotalk.org/parkinson-s-disease/103714-surnames-pd.html)

Ronhutton 09-23-2009 10:32 AM

Surnames in PD
 
Sitting at the computer, and thinking as always about PD, I thought that if PD was largely genetic, the prevelance should be higher in certain surnames.
If no patterns of high incidence figures in certain surnames exist, it argues for environmental causes.
There are too few of us I think to carry out a meaningful statistical survey, but are there figures for the top surnames in PD? I have done a search and can't find any figures, but surely someone must have done the analysis.
Ron

ZucchiniFlower 09-23-2009 12:10 PM

Ethnic background may be a better way to go.

My dad had PD and the fact that our background is Ashkenazi Jew is NOT good for me.

My father changed his surname, and I'm the first in our family with the new name. So I laugh when family tree people tell me about my relatives.

Of course, in any such study, I'd use my dad's original surname. And my mother's.

I've always informed my neuros of my ethnic background. They previously thought that late onset is NOT genetic, but were proven wrong in 2005 or 2006.

I had told my neuro about a 2003 study with Poles, and there was a genetic connection in the study. She disregarded it but I was certain that it was relevant. Honestly, I've always been ahead of ALL my neuros (including MDS), because I don't fit in a neat box. Varied symptoms (and pathology) are often typical of LRRK2 mutations.

By the way, my neuro said it would be fine if I used mucuna pruriens because it is natural, even though she'd never heard of it. I mentioned if after she mentioned fava beans. She said several incorrect things, too so I lost all respect for her.

One example: she said it could not be dopa responsive dystonia (I thought maybe my dad was misdiagosed) because:

I respond to Artane (trihexyphenidyl), and DRD responds to l-dopa. I said those responses are not mutually exclusive! I even explained WHY! Twice, I tried to talk about it but she ignored me. I got home, looked it up in PubMed and people with DRD often respond to Artane. DUH!

reverett123 09-23-2009 12:21 PM

good idea
 
Ron-

Seems like a good idea. In retrospect, I probably should have asked you first (sorry, but I did credit you at least), but I emailed Paul Wickes asking if their database could do it.

Am I right in thinking that it would need to be limited to male PWP unless maiden names were available?

-Rick

Ronhutton 09-23-2009 01:25 PM

Surnames
 
Hi Rick,
Any help is very welcome thanks.
I wonder if the statistics are avaible with surnames at birth. I had wondered how we would get over the maiden name problem.
There is such a debate on genetic v environment (pesticides etc),
I thought this might give a strong indication which one predominates
Ron

olsen 09-23-2009 03:01 PM

genetics of pd
 
hi ron and rick, wonder if the people over at 23andme would lend a hand...madelyn

vlhperry 09-24-2009 06:14 AM

The Information could proove helpful, but ...
 
The information would be fascinating, however, bean counters at insurance companies could begin upping cost for insurance based on a person's surname. A surname affiliated with a high risk for cancer carries higher risk for the insurance company.

Are you sure you are ready to open that can of worms?

Vicky

olsen 09-24-2009 03:07 PM

surnames
 
hi vicky--sometimes I am overly enthusiastic. Just seems like a good idea--or compilation of ethnic background information. and I forgot about HIPPA laws, too. Must begin to set a governance on my enthusiastic responses.

zucchini, my husband is also of Ashkenazi origins, both parents. He does not have LRRK2 mutation as determined by 23andme genome testing. though there is no history of PD in his family, and the members of are quite long lived. madelyn

jeanb 09-24-2009 07:22 PM

Georgraphic location like MS?
 
Ron, in the States, there is a higher incidence of MS in the upper midwest states. (Illinois, MInnesota, Iowa, Wisconsin, Michigan...)

Maybe there is some geographic distribution of higher incidences of PD as well? If the MS & PD Registries Act passes, we hope that is one of many questions that will be answered.

Ronhutton 09-25-2009 01:13 AM

Vicky,
In the UK, we don't have the same problems in health as you do in the USA. First, everyone over 60 gets free prescriptions. Then everyone has free healthcare under the National Health Service (NHS). Then the fortunate ones like myself have private healthcare for life as part of my pension.
However, I recognise what you are saying, I worked in Chicago for a couple of years, and did not even register with a doctor, due to the costs.
So if it causes problems for you over there, I am happy to drop it.
It just seemed a simple cheap way to get a pointer on genetic v environmental causes of PD
Best wishes
Ron


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