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 suspect my depression is also genetic as my Dad and sister both suffer with it badly also and have both been hospitalised as a result of mental health issues.
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 genetic 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. I know I have bad health anxiety and my health anxiety and pre existing anxiety and depression are not helping this whole situation but it feels like a lot to deal with mentally now.
So upset about my Moms diagnosis. She’s my best friend and helps me so much and I’ll be lost without her when her condition gets worse. And am also so upset thinking about how I’ll now probably be the 3rd generation of parkinsons in my family. My mom and her siblings were all traumatised watching my grandmother deteriorate and now I’m going to go through the same thing and am worried my child will too.
How can I possibly live a normal happy life with all this hanging over me?
