Gratitude

I’ve lived a blessed life. Sure, I was unfortunate enough to develop a degenerative neurological disorder at 29, but despite the inconveniences that has brought, I find myself feeling incredibly lucky to be alive in the time and place that I am.

You see, of all the places and times that I could have been, I somehow found myself living in the one that not only had developed just the procedure (deep brain stimulation) that I needed to live as comfortably as possible, but I also happened to live near a hospital at the the forefront of its development and have access to the team that spearheads its continued growth and have parents who had both retired just in time to help me through my recovery. I’m not sure what I did to deserve all of that, but I find myself very grateful to be when and where I am and to have the particular disease that I have.

Huh?

Anybody who has followed me will know that I owe a lot to Prof. Alberto Espay. But of all that he has done for me there is one thing above all else that I am grateful to him for. He summed it up as only he can in a message he recently sent me:

“You are living proof that there is no “Parkinson’s” but people living with some form of what we call PD for lack of a better name –and everyone is different. I fully agree with Alfonso (Fasano). Yours is a pure nigrostriatal form, unlikely to spread to non-motor regions and, as such, not that critical if we never learn of its biology (which, in turn, is critical to many others with far less benign variants, and the reason we created CCBP). A confirmation will be that post-DBS life barely reminds you of any symptoms of PD…Take as much time as you need. Learning what will fulfill your sense of purpose best is very important and only you can do that. I shall continue to root for you and look forward to our next time together. Much, much love from Cincinnati!”

I guess it shouldn’t really have come as much of a surprise to read, after all, we did write a book together that basically argued just that. Still, when he finally clued me in to what it might mean for me, I shed a tear. I don’t have Parkinson’s disease.

Now, that is being a bit overdramatic as more to the point I now know which type of Parkinson’s I have, which was again confirmed recently for me by just how well I respond to DBS.

Now, that is not to say that I have been cured or that my Parkinson’s is now in the rearview mirror for me. In all likelihood the disease will continue to progress and change over time and become more and more problematic. Thankfully, my version of DBS is a new kind called adaptive or closed-loop DBS. We have not turned on any of the adaptive settings yet, and since I am part of a trial for it there won’t be anything that I can really say for some time, but the basic idea is that once we do turn on those settings it will then be able to read and understand my symptoms better than I could and then dynamically adjust the settings through each day without me having to touch anything.

And that is still not to say that there won’t come a point where the disease does outstrip even adaptive DBS’s ability to properly treat it, but it should give me the best chance possible to live as healthy a life as possible for as long as possible.

This is what I drew for my neurologist to describe the benefits I felt from DBS. The greatest benefit thus far is that it has made my days predictable. I no longer experience the wild fluctuations that I did prior to my surgery. I can now sit for meals or play with my nephew and niece and not have to think about where I am on my daily On/Off curve or worry about when I might suddenly become too dyskinetic or rigid to do anything, nor do I have to lug a box of various pills with me everywhere I go.

But most are not so lucky. The majority diagnosed with Parkinson’s disease will never know which form they have or how best to treat it. And even if they did, they will likely not have access to the team and support system needed.

But why? Why is that we can’t properly care for people living with these conditions? Why can’t we get them the therapies they need?

Well, there are a lot of reasons. Too many for me to try and list or go through all at once here. I have spent most of the past six years travelling and trying to educate myself on the science of Parkinson’s diseases and the healthcare systems that we have built around it that drives it forward. Frankly there is too much to unpack, but I am in the process of writing a book where I try to distill as much of what I have learned down into a few hundred pages in the hopes that others will be able to learn about how they might be able to do something similar or just be inspired by the journey I have taken.

Here’s the table of contents so far, though much of what you see below may change.

Last order of business for now. The title of this blog post is Gratitude. I have found that taking a bit of time out of each day to just sit and think about someone you are grateful for knowing to be very therapeutic. So, dear reader, what I’d like to ask is for you to scroll down to the comments and write the name of a person that you are grateful for. No explanations needed, just a name.

Thank you and enjoy what is left of the day wherever you happen to be.

Banner Image: Credit to tattoogrid.net (and Dr. Megan Duffy for finding it)

18 comments

  1. Whoever developed my elementary school curriculum that included an excursion to the local library. My parents were/are both not big readers but I will still thank them here for always encouraging that hunger for books in me.

  2. Ben, this is such a thought-provoking, interesting article. I enjoyed reading it and plan to keep a copy for future reference.

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