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Benyamin

A Journey Round My Brain

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MOST informative article I've read in a long time. I'm also a huge fan of Oliver Sacks and have been for many years. Do you have a regular blog we can read?

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Thank you!  Being Ashkenazi, I signed up for a clinical trial near me but while I fit the profile 100% they didn't need me "just yet".   

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Benyamin,

Loved reading your latest blog.  What are your thoughts about PD being an autoimmune disease (for some people)?  Seems to me that the 40 some genetic markers that have been linked to PD may also play a part, as they may make a person "susceptible" to a trigger that then sets off the autoimmune system's mutiny against dopamine.  Have you found anyone throughout your travels and research that is studying this "form" of PD?

I'm fascinated by this possibility and more importantly any insights it can provide my husband (Rob) and I in our quest for designing, implementing, revising, and re-implementing our plan for managing his PD for many more years as part of our journey through worthwhile living.   Rob also has the rare autoimmune disease Birdshot Chorioretinitis - which we suspect was triggered by a tic-borne disease for which he was treated about 11 years ago.  (We've been successfully abating the progression of this incurable retinal disease for over 10 years with the guidance and input of a renown specialist at Johns Hopkins). Rob was diagnosed a year ago with PD and while he is not part of the YOPD subset, he is "only" 57.  We are very intrigued by this new development (when we're not being "ticked off" about having to navigate its complications) and it's hard not to  suspect there's some connection between PD and autoimmune diseases that attack organs in the head!  

Currently I teach mathematics in a public high school in a small county in the state of Maryland so summertime is when I delve more deeply into learning about PD and trying to synthesize the information I find that seems relevant so that Rob and I can design a plan for worthwhile living that best meets our needs and desires.   We want this to involve working with an MDS who "thinks" like we do.  So far this person hasn't been "found" but we're sure he or she is out there, we just have to keep learning and looking.

Thanks in advance for any info. you have or could point me toward.  Best of everything as you continue your life's journey.  I think you're amazing and I'm so grateful I "found" you in this forum.

Cheers,

LHG

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Hi Lonnise, for all the latest on PD as an autoimmune disorder I'd suggest this blog...

https://scienceofparkinsons.com/2017/06/25/the-autoimmunity-of-parkinsons-disease/

Anecdotally I can tell you that I suffered from migraines all throughout my childhood and believe that that inflammation may have triggered an autoimmune response that may have played a role in the early onset of this disease for me. But of course, there's no way of knowing for sure.

Glad to connect, good luck navigating the murky waters of PD.

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Awesome, thanks Ben.  Just read the post linked above and clicked on "blog about the blog" and found you met this blogger in June and he is a great admirer of yours with good reason.  I hope we can find an MDS and/or group that is interested in helping us "figure out" Rob's particular "strain" of PD in an effort to design and maintain the most effective management regime.  All the best to you and thanks so much for sharing your discoveries and insights. Love your writing.

Cheers.

Lonnise

 

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Hi, Ben.  What a wonderful source of information you've compiled, and written in sections that help address things such as what we can learn from the study...

I had a thought about the study of milk and the link with PD (and yogurt not having a link).  Were the milk and yogurt studied commercial--i.e., not organic--and if so, what if any things were added such as hormones? Or was it organic? Grass-fed?  Whole?

Thanks for sharing this great resource with us. 

Edited by Linda Garren

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