@A MyParkinsonsTeam Member , I am more cynical about your comment that "DNA will have the answers for everything medical." The more research that's done in genetics,the more scientists have found that it's critical to understand what 'turns a gene on' which can lie in the environment. And people who are expert at measuring environmental exposures are not expert at genetics and vice versa. Doing cross-disciplinary research is difficult. It something I often do, and I am amazed at how much gets lost in translation/unspoken assumptions. I have done limited international research and it's crazy-difficult. Even working with French-Canadians, lots gets lost in translation (and I speak some French; my collaborator spoke even better English.) Across countries: Different regulatory bodies, different ethical standards, different everything. About genetic testing: neither I nor my Dad have any of the known genetic markers for PD. We're both considered "low risk" for PD according to 23andme.com . Not everything is encoded in a single gene for a complex disorder, and the number of potential interactions among different pieces of the gene are phenomenal; now combine that with an infinite number of environmental exposures, prenatal exposures that may be unmeasurable after birth, etc. I'm much more cautious about the trajectory of knowledge growth, but I'm not without hope for significant progress.

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A MyParki...

@A MyParkinsonsTeam Member, As I mentioned above, phase 1 studies with humans with pd have recently begun.

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A MyParki...

I haven't read all the posts here yet but @A MyParkinsonsTeam Member, I agree with your attitude about PD. You own it but it does not own you. I have a similar quote on my profile.

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A MyParki...

BTW, @A MyParkinsonsTeam Member, state of the art statistical combination of various studies on the role of head trauma that leads to concussion suggests that it probably increases risk of PD by about 50%. So, it may have been a contributing factor, but it's clear that many other factors must have been involved in your case and undoubtedly in everyone's case.

Pretty funny, as you reveal parts of your life story and I share mine: At least the two of us seem to share tendencies toward sensation-seeking and higher risk behavior. I was at a small meeting about PD within a year after diagnosis, and the presenting research clinician stated that "PD is associated with low Novelty Seeking and high Harm Avoidance personality traits." I laughed to myself, because it so does not describe me. Just goes to show you that, even if there IS a statistical association (and studies do confirm this when looking at PWP AFTER developing PD), there is certainly individual variability. I have been an adventurous sort my whole life (barrel racing on horseback, trekking in the Himalayas, traveling alone through India at age 21, skydiving and hang gliding, etc.). Wish that this kind of thrill seeking behavior protected me from developing PD!

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A MyParki...

@A MyParkinsonsTeam Member, I personally can relate to the frustration. My own research work is not in PD (although one or two folks have tried to persuade me to switch -- I wish it were that easy!), but I do have a bit of an insider's view of the difficulty of the research process. And it's hard, if not impossible, to not feel beyond frustration when research proceeds at such a slow pace yet the disease process refuses to obey the same rules. I do believe that, in our lifetimes, treatments that may slow the pace of the disease process and better manage it will be developed. Cure? Stop it in its tracks of debilitating progression altogether, in the course of my naturally remaining life (I'm almost 62)? I'm skeptical. The skeptic in me is stronger than the optimist, but I can still hope that the skeptic is wrong.

And, on my list of today's Gratitudes is gratitude for living with PD in a time well after science discovered that dopamine depletion in the brain was the key deficit (late 1950s). gratitude for living with PD in a time after the first open label clinical trials with levodopa were conducted (late 1960s), and gratitude for living with PD after carbidopa/levodopa was first commercially available (1975). I know that I would have NO FUNCTIONAL LIFE AT ALL, were I to have lived and developed PD before carbidopa/levodopa was commercially available, Without it, I am all but 'locked in,' frozen and unable to care for myself. Now, in the post-carbidopa/levodopa era and almost 7 years since my symptoms first reared their mysterious head, I am still working f/t and still able to work hard, and am enjoying life and adventures with my family. When I remember how far we have come scientifically in a relatively short period of time, yes, I am grateful and hopeful but also realistic. My gratitude balances out some of my frustration about how far science still has to go in effectively STOPPING PD. One woman's perspective.

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A MyParki...