Positive for the LRRK2 gene

[Missy0202]

I am positive for the LRRK2 gene. My father has pd and so did his Dad, as well as my mother’s Mom. I have two girls and 3 sisters. This news can be a curse or a blessing. If you have any words of wisdom I would really appreciate hearing them

[redhawk1]

Missy, if I were you I would thoroughly investigate the upcoming (sometime this year) Denali DNL151 phase 2 clinical trial. This experimental medication is targeted at those who have the LRRK2 gene.

[Missy0202 in reply to redhawk1]

Thank you so much!!! I absolutely will!

[MBAnderson]

I have a few words of wisdom.

If I were you, I'd pull out all the stops and adopt every lifestyle and diet change just as though you were recently diagnosed & very highly motivated to minimize its effect on you. If it turns out that you don't get PD, you'll be glad for having made these changes anyway because you'll be super healthy and energetic the rest your life. If you do to get diagnosed, that diagnosis may come later and symptoms may progress more slowly.

Lifestyle changes I referred to consist of 45 minutes of strenuous, aerobic exercise, at 80% of your capacity if possible every day, nutritional changes, weight/strength training, balance and flexibility exercises, sleep hygiene, social engagement, stress management, learning new things, supplements, intermittent fasting, testing for and correcting imbalances and deficiencies and perhaps things like dancing, tai chi, Qigong, sports, yoga, acupuncture, massage, etc.

I would take up serious long distance running or cycling and I've settled on the Mediterranean diet.

[Missy0202 in reply to MBAnderson]

Thank you so much for taking the time to reply. I should have mentioned that I was diagnosed a year ago. I have followed your protocol for the last year. I do stuggle with the exercising at 80% though... I was never a couch potato, but I hated to exercise and now I am pushed to do it. I hope in time I actually enjoy it, and can get to my 80% for longer than 1 min

[MBAnderson in reply to Missy0202]

I cannot get to 80% quickly either - not on a stationary bike, elliptical, or treadmill.. The only way I can get to 80% is to walk fast for a long time. Eventually I'm working hard enough to be there. As I am trudging along, I have to remind myself that the harder it is, the more I need it and the better it is for me.

[Missy0202 in reply to MBAnderson]

You're so right. Good for you, You will keep inspiring me to do more!

[park_bear in reply to MBAnderson]

Good list, and one of the top priorities among these is keeping stress down, which means not trying to accomplish all this at once, but selecting interventions one at a time and doing them at a relaxed pace.

[Parkinsonjisung]

Only a small proportion of people with that gene end up getting parkinson. I like your odds 😄

[Missy0202 in reply to Parkinsonjisung]

I neglected to say that I have PD diagnosed a year ago. That's when I did the genetic testing. It took one year to come back believe it or not! Thanks for taking the time to reply

[Parkinsonjisung in reply to Missy0202]

Oh.. least you any drug targeted at that mutation could help