*DBS (Deep Brain Stimulation)


Hi! I’m so excited to finally have a short, 5 minute video entered into the 2011 Neuro Film Festival on You Tube. There already are a lot of videos which can be found at the contest site (www.neurofilmfestival.org) and all the ones that I've watched have been very touching and somewhat hard to watch as people are really struggling with whichever neurological condition they have.

But this is about MY video – the making of it, the reason for it, the circumstances surrounding it, and most of all, the amazing surgery that has returned me back to almost being Parkinson’s symptom free! This is my story told my way.

When I was 36 years old, after many tests done by a variety of doctors, I found out that the nebulous problems I’d experienced for the past 3 years really added up to one thing. My husband was with me at the time, our two young sons, ages 4 and 6, staying with dear friends while we drove into Center City Philadelphia to meet with a Movement Disorder Specialist. That afternoon I finally received a diagnosis – Young Onset Parkinson’s Disease (PD) – a progressive debilitating disease for which there still is no known cure over 14 years later. At the time, neither of us knew enough about PD to be scared. I was just relieved to finally find out I wasn’t crazy – that the ever changing symptoms were not imagined.

Flash forward nearly 14 years to my surprise 50th birthday party. As I struggled to open gifts, my Mom was talking to one of the party guests and discovered a fateful coincidence. A boy I had known since kindergarten, Dan Weyand, but hadn’t seen or spoken to in over 30 years, was the cousin of this friend! So he put Dan and I in touch with each other by e-mail. That happened a little over a year ago and we kept in sporadic touch with each other long distance between California and Colorado until January 2011.

But to understand January’s events, I have to backtrack a couple of months to November 2010 when I had what has been a miraculous brain surgery called “Deep Brain Stimulation” (DBS) to offset the symptoms of PD that, over time, had become non-responsive to increased levels of PD drugs. At the time of the surgery, I took 26 PD pills per day in six separate doses and they were unreliable. My quality of life had declined significantly.

My DBS surgery actually consisted of three separate surgeries, done a week apart from each other. The first surgery, which I was awake for, was a short procedure to put fiducials (screws!) into my head to hold in place a plate - a map of my brain basically - that would be used during Surgery #2, or as I call it, The Biggie. In surgery #2 a week later, I had to be awake the entire time (7+ hours) in order to help my neurologist determine when the electrodes they were implanting in both sides of my brain were in the optimum positions. In surgery #3, the wire bundle from the implants were connected from behind my ear, down my neck and shoulder, and into a stimulator implanted near my left collar bone. I was glad to be asleep for this final one. When I awoke, I had a fully functional battery-operated brain. Almost all signs of PD are now gone! I now take 7 PD pills per day spread out over 3 doses and we’re still adjusting my meds downward!

But the implanting of the electrodes is only the beginning of the DBS process as months and months of programming to find the optimal settings follows the surgery. During one of my programming visits to my neurologist’s office, I had forgotten to take along a book to read between “tweaks.” So I picked up a Neurology magazine and in it first read about the 2011 Neuro Film Festival sponsored on YouTube by the American Academy of Neurology Foundation. Pretty much the only requirement was that I submit a video not longer than 5 minutes which included the words “Let’s Put Our Brains Together to Support Brain Research.” I admit what first drew my attention to the contest was a chance to win a trip to Hawaii, a place I’ve never been. I thought it would be so great if I could win a trip so I could take my husband on vacation for a change, something I haven’t done in the 17 years I’ve had PD. But, then the required words sunk in and I thought “Who better than me to encourage people to support brain research? Who is a better example of the successful treatments – the miracles - that brain research can result in?” So I decided to create a video telling of my journey with PD to enter into the contest.

I got my thoughts down on paper and even made a Power Point slide to open with. I knew I had a great story to tell, but I just wasn’t sure if I would do it right. So on January 8th, I asked my friend, Dan, via e-mail for his “professional help” by having him look at the finished video and giving me his advice. I explained that although the trip to Hawaii was an incentive, I really wanted to do the video because I thought my experiences might give hope to others with PD or other debilitating conditions.

Asking Dan for professional help was not just a courtesy – he’s the real thing, a true Hollywood filmmaker with over 30 years of experience! And he responded by taking over – taking on the making of my little video as if he had nothing better to do in his life! From California, he spent countless hours telling us what he needed, asking his mom, Maryruth to write a script and to videotape me and my family members, keeping me busy writing, sending photos, explaining things, and just generally covering every detail of this whole process. He surprised and delighted me by getting the rights to use Herman’s Hermits song “Mrs. Brown You’ve Got A Lovely Daughter” in the video – a bit of nostalgia as he used to call and sing it to my Mom eons ago! Equally great, he was delighted to use music performed by my friend and neighbor, Maree McRae, in the video too.

Why did Dan return to my life at just this time? He and I both think it was “meant” to be – that his taking on this project with unstoppable enthusiasm was the reason we got back in touch with each other after so many years. So that he could help me try to help others with my story.