Three Years Post Deep Brain Stimulation Surgery

Today marks exactly three years since I got two electrodes surgically implanted six inches through both halves of my brain and I feel great! So great that I just spent a month driving all around the North East of North America all by myself! That may not sound like a great accomplishment for a near 40-year old but considering I am now nearly 11 years post Parkinson’s diagnosis it feels pretty remarkable to me.

I began in Kingston, Ontario then spent a week in Fishkill, New York then went on to New York City, Princeton, Boston, Trois Rivieres, Quebec City and then Montreal before coming back through Kingston and on to Toronto to close the loop. Over 3000 kilometers later and I’m now back in Kingston without a scratch on either me or my car.

Along the way nothing that extraordinary happened. Saw a few deer and rabbits, stopped for some increasingly expensive gas a few times, it would have been a rather ho hum trip if not for the fact that it was also partly driven by an implant in my brain (which you can read all about here). Three years ago I wasn’t even sure I’d still be alive by now, let alone feeling well enough to drive thousands of kilometers across the United States and Canada alone. I certainly never would have thought I’d be able to do something like this, let alone that I’d be able to do so without taking any medication to help control my symptoms the entire trip.

I should mention that I wasn’t just joy riding but also telling my story and spreading the advocacy mission which I have been on for over 8 years now at universities, medical centers and biotech companies along the way. Special thanks to the professors and CEOs who let me speak to their students and staff from Queens University to Columbia University to the top of the World Trade Center to Harvard Medical School to Université Laval and to McGill University.

Side note: This might sound like an advertisement but I’d be remiss if I didn’t thank the people at Subaru. In January I leased a 2024 Crosstrek and we’ve been through quite a bit since. It began that first month when I was mugged by a drug addict just outside the townhouse I was living in. He sped off with the car but thanks to the GPS tracker built into the MySubaru app, and the speedy actions taken by the York Region Police Department, I was able to get my car back within 2 hours of it being stolen without so much as a scratch on it. Additionally, though I say I drove this 3000km trip that isn’t exactly true as much of it was steered by my Subaru’s drive and lane assist features that had me feeling like I could have slept much of the way. Relax Mom and Dad, I didn’t. Though I imagine we are not too far now from that future becoming reality, which will be a huge boon for all in the movement disorder community.

Once again I am left feeling incredibly grateful and lucky for the freedom adaptive Deep Brain Stimulation has given me. They might be getting sick of hearing this by now, but I can’t thank my healthcare team enough. From Drs. Alfonso Fasano, Suneil Kalia and Alexandra Boogers to nurse practitioner Yu-Yan to the teams behind them at UHN and Medtronic as well as of course my parents for giving me the one thing every patient really wants, not having to feel like a patient. It has taken a village to get me here and I am exceedingly grateful for all that each and every one of you has done for me. No idea how long I will continue feeling this well but I intend on squeezing all that I can out of this freedom that I have been given.

Now, before I leave readers with too rosy a picture, I should mention that my condition is not perfect. I do still have a slight tremor, I do have a tendency to slur my speech from time to time and my gait & balance are a little wonkier than I’d like. Additionally, another potential cause for concern is my battery which I need to get replaced about once a year (though hopefully the rechargeable version will become available soon in Canada and I will be set free of the ADAPT-PD trial I am still in, right Medtronic?)

However, I have almost none of the slowness of movement (bradykinesia), excessive movements (dyskinesia) or painful cramping (dystonia) I once had. More importantly, my outlook on life is very hopeful and I feel I can live my life for the most part, free of disease. That more than anything else has me really looking forward to all that the future has in store. What I will do with that freedom I am still not quite sure but am forever grateful that it looks like me and not my disease get to make those decisions.

Stay tuned as I plan on spending much of this next week writing up a report on all that I saw at last week’s GBA1 conference from Montreal and share some rather optimistic reflections on the state of science in Parkinson’s disease that emerged from this trip.

Sincerely,
Benjamin Stecher

PS. For anyone looking for a little extra inspiration or motivation this Canada Day, watch this clip of Michael J. Fox performing this past weekend alongside Coldplay at Glastonbury. We truly are capable of more than we know.