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Will I be the 3rd generation of parkinsons in my family?
Has anyone tested positive for LRRK2 before being diagnosed with Parkinson’s? How does one live happily with such a high risk hanging over them?
I haven’t done genetic testing yet but the more I read the more sure I am that the LRRK2 mutation is what caused my grandmother (diagnosed in her late 70s) and my mother’s parkinsons (symptoms started at 59). My grandmother also had colitis which is also strongly linked to a mutated LRRK2 gene. My understanding is that if I have inherited this same gene then my chances of developing parkinsons are 50-100% by age 80. I’m 34 female by the way.
I’ve had other health problems these past few years. I am also positive for the BRCA gene which resulted in me getting a preventative double mastectomy and will be removing my ovaries in a few years. I have really struggled with mental health problems (depression and anxiety) my whole adult life. I’m currently pregnant and my terrible genetics are haunting me and making me feel like a horrible person for pro creating and inflicting my terrible genes on the next generation.
I’m so stressed out and anxious about what the future holds that I can’t enjoy life at all and feel like I’m just passing time til I’m diagnosed with cancer or parkinsons. Not even sure which one is worse anymore. Has anyone tested positive for a very high risk parkinsons gene who can give me any advice on how to live with the knowledge?
I have my parkinsons gene result hidden on 23andme because I thought I didn’t want to know. I thought if I knew for sure I had the gene I’d spiral and end up manifesting parkinsons. However I’m so sure that I have a high risk parkinsons gene now that I’m not sure it make any difference if I see the result or not. I’m already living like it’s inevitable that I’m going to get it some day.
Also worried because I’ve read that the children of people with Parkinson’s tend to get it earlier. That was the case with my mother’s symptoms starting almost 20 years before her mothers. If I’m to go down the same path and be diagnosed almost 20 years before my mom then I don’t even have a decade left. Scared, anxious, stressed and struggling to live with this knowledge.
So sad about my Moms diagnosis. She’s my best friend and helps me so much. She’s taken the news very badly. Hurts me to see how much she’s suffering. My mom and her siblings were all traumatised watching their mother deteriorate and now I’m facing the same future. And it’s looking like there’s a good chance my child will also have to repeat the same terrible faith some day.
My health anxiety and pre existing depression and anxiety are not helping this whole situation but still it’s a lot to deal with. It feels like my life has gotten very dark these past few years. I used to think I was “lucky”, “blessed” and “healthy”. But now I feel like I’ve been cursed with the worst genetics ever (high risk for the two things nobody wants cancer and parkinsons) and I’m so jealous of anyone with healthy parents and a brighter future ahead of them. I suspect my depression is also genetic as my Dad and sister have suffered badly with it also resulting in both of them being hospitalised for it. Really struggling to be positive about anything these days. The anxiety about the future is destroying me.
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Hi, @katiecat1, and welcome to Mayo Clinic Connect. I'm sorry to hear you have health anxiety and pre-existing depression about the possibility of being the 3rd generation of Parkinson's in your family and the potential to pass this on to the next generation.
Feeling so stressed out and anxious about what the future holds that you can’t enjoy life at all and feel like you're just passing time till you're diagnosed with Parkinson's is a really challenging way to live. It's also got to be really hard to see your mom develop symptoms of Parkinson's and receive a diagnosis, even more so because her mom was diagnosed with the same disease.
Being positive for the BRCA gene alone and having a preventative double mastectomy and planning to remove your ovaries in the future is a lot to deal with mentally and physically. I can imagine how you would not be anxious to be in another situation like this with Parkinson's.
Related to getting or not getting genetic testing, a friend of my husband and me had a mother who died of Huntington's disease. This friend never wanted to get genetic testing done, I believe out of fear. However, his friends playing board and card games with him and hanging out with him over the years could see the deterioration which clearly seemed to indicate Huntington's. They were very sad for him. Yet, they really could not discuss any of this comfortably, since this friend of ours didn't get genetic testing done before symptoms ever arose or seek a diagnosis later when he did have symptoms. He eventually got laid off from his job and was unable to get another position. He ultimately ended up debilitated, and his live-in girlfriend took care of him. He died over one year ago in his 50s.
Was that the right decision for this friend? No one knows, and no one except him could know what the best choice was for him. His choice was (potential) denial before he had the symptoms when he decided not to pursue genetic testing and then when the actual symptoms appeared. In many respects, it would have been nice if his friend group could have supported him during genetic testing and later a diagnosis, and discussed what he was experiencing with him.
For you, as well, katiecat1, as you know, it's ultimately up to you whether you want to know if you have tested positive for leucine-rich repeat kinase 2 (LRRK2).
If you want to read about Mayo Clinic testing for inherited Parkinson's disease, here is information about a Mayo Clinic Laboratories panel offered:
- Test Id : PARDP Inherited Parkinson Disease Gene Panel, Varies https://www.mayocliniclabs.com/test-catalog/Overview/617675
I'm also tagging a Mayo Clinic Connect member who has mentioned commercial DNA testing which included testing for LRRK2 @Erinmfs. Though this member mentioned testing negative, I believe they will be familiar with what you are discussing related to concern about having this genetic variant. I'd also like to tag @hopeful33250 @johnjames @ggopher @tower @macowen and @jenniferhunter, who have had a Parkinson's diagnosis, had a loved one diagnosed with Parkinson's or have knowledge about the disease. I think they may have some input from their personal experiences and research to offer some thoughts about finding out about your status with this high risk Parkinson's gene.
I have thought a few times about what brings me joy over the years, especially in down times, and a few things have come to mind that are helpful for me to add back into my life at times when I'm not involved in them. These include music, dance, travel, reading, being in nature, and spending time with family and friends. As you are living with this tension, katiecat1, have you reflected on what types of things bring you joy? If so, what are they?
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2 ReactionsHello, @katiecat1,
I am sorry to hear about all of the health issues you are dealing with. I can certainly understand how a possible diagnosis of Parkinson's can add to your feeling of being overwhelmed. I have had three surgeries for a rare form of cancer, as well as a PD diagnosis. As far as I know, there have not been any other members of my family with PD, so it is difficult to know for sure who will get it or who might avoid this diagnosis.
I hope that you can put this possible diagnosis in perspective. Please know that even if you were to be diagnosed with PD sometime down the road, it can be managed. Newer treatments, medications, and therapies can keep PD from causing profound disabilities. If you receive a PD diagnosis, it is essential to find a doctor who specializes in movement disorders and works with a Parkinson's Center of Excellence. This type of medical facility would help you cope with the problems associated with PD.
Sometimes it seems that anxiety and depression can rule our life. It is important to avoid that. I hope you have support through personal counseling, therapy, and/or medications to help you deal with these worries. Will you continue to post as you work through these issues? We are here to listen!
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