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LRRK2 familial PD

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6 replies to this topic

#1 Wondermom



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Posted 22 March 2013 - 04:28 PM

I was diagnosed at 42 (I'm about to turn 50). My sister at 46, my mother at 65. We are LRRK2 carriers. Ashkenazi Jews. Anyone else have family PD? YOPD?

#2 christie


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Posted 22 March 2013 - 04:47 PM

Wondermom, welcome to our forum !

You might find interesting this recent discussion on LRRK2-related parkinsonism:


-English is not my first language !

-Aged 40. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 600mg daily) and Azilect (1mg daily).

#3 Kristakj78


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Posted 22 March 2013 - 08:05 PM

I was diagnosed about a year ago, but had the symptoms for years (ignorantly not knowing what they were). I just had the genetic bloodwork done a few months ago, and came up positive for a mutation on my LRRK2 gene. Weird thing is, they said ironically that it didn't cause my PD. The genetic counselor told me last week that the specific mutation I have didn't penetrate the gene enough! I don't know anymore...I have a fam history of neuro disorders, but no PD. The whole thing have left me guessing even more as to where I got it from.......frustrating! I will say Sinemet has worked WONDERS for me though!

#4 SolarPD



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Posted 18 May 2013 - 05:31 PM


I'm new to this forum. I was diagnosed when I was 42. I found out from 23 and Me I have LRRK2 gene. In fact, they asked if my first degree relatives would give genetic samples. They all agreed. I am an Ashkenazi Jew and have participated in the clinical trials for Ashkenazi Jews (they are looking for biomarkers) as well as a trial for early onset (Michael J. Fox Foundation Trial Finder has more info on the trials.

My paternal grandfather had PD as well as one of his brothers. What is it you would like to know?

#5 KimAgain


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Posted 19 May 2013 - 04:31 AM

Hello SolarPD,
Welcome to the YOPD Forum... I hope you are settling in and find our abode to your liking!
We're all here to jump on any questions you may have, so feel free to fire away!

Dx 2004, age 45.  DBS surgery, July 2009:  Bi-lateral STN placement; wires to one battery - on my left side. Battery sustained for right at 8 years and a new one was implanted October 27th, 2016.   Zero Sinemet CR daily (this took six and a half years to accomplish). 100mg Amantadine 3 x daily.  60mg Cymbalta daily.  SPS: Right. I invite communication with anyone who wishes to discuss DBS, PD, or any related topic; my email address is:  wyndsong@charter.net - email me if you'd like my phone number.


"Be kind, for everyone you meet is fighting a hard battle." --Plato

#6 dgray001



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Posted 21 June 2013 - 11:01 AM

I was diagnosed at 41 with PD and my Dad had it as well, though he developed his later in life. After some research, we discovered several other people on my father's side that had PD or PD like symptoms. My doctor urged me to get the genetic testing done and I have submitted my DNA, just waiting on the results. He said if I carry the gene, its possible my brother and my son could have it as well.

Edited by dgray001, 21 June 2013 - 11:02 AM.

#7 Donald Ennis

Donald Ennis

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Posted 29 June 2013 - 10:02 AM

I don't know if my PD is genetic, there are 3 of us in my family, me, Mom and Dad. Me and Dad are both YOPD, although Dad was diagnosed almost 30 years ago and still kicking. Our whole family, including all 7 of my siblings are participating in the PaGeR (The Parkinson's Genetic Research Study) being conducted by the University of Washington and the VA Puget Sound Health Care System. This is the web site, http://depts.washington.edu/pgrgroup/

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