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Speech by Dr. David Heydrick given at Neural Interfaces DBS Patient Panel - August 21, 2006 Bethesda, MD

Dr. David Heydrick

First of all, thank you all for your interest in DBS and your work. Four years ago I was 39, driving home from my Neurology practice, and noticed my dominant right finger tapping was slower than my left. A few months later a right upper extremity tremor started, followed by micrographia. A few months after that, after an F-dopa PET scan (as part of a research study), I came to grips with diagnosis of Parkinson's. Unfortunately, things went from bad to worse rapidly, due in part to stress and ill-tolerance of dopaminergic medication. Within 2 years, my entire right side was tremoring so much, my fatigue was overwhelming, and my pain from rigidity and foot dystonia were so great, I couldn't work, write, drive, button shirts, give talks, or even be much of father to my 2 boys including throwing a baseball accurately.

For this former college pitcher and former mechanical engineer who likes working with his hands, I had reached rock bottom. So in 2005 I went where I originally said I never would: DBS (of the bilateral STN, staged 9 months apart). On hindsight I wish I had done it earlier. I had gone through 2 miserable years of increasing disability, trying all the medications. With DBS, in a matter of months, this was reversed. DBS exceeded my expectations and restored my function and Quality of Life. I remain off medication. My fastball is now 60 mph. Last month, in one week, I rode 500 miles across Iowa on a regular road bike with my son and the Pedaling for Parkinson's team - century day. This would not have been even imaginable two years ago.

There are many terrific things I could tell you about DBS: the profound moment it was programmed and how it felt when my face and arm and most of my leg tremor went away for the first time in two years, or how it relieved the pain from my stiffness and rigidity and subsequently restored the simple pleasure of relaxing, or how I can write again. How it allowed me to exercise and ultimately come off disability. It's not perfect, no therapy is. E.g., I trade off tremor control for speech ability. Reasons Margaret and I are sitting here are - give you who are the perfectors of this technology insight into how DBS affects the patient, what we feel you should know about it. But this audience is in a unique position. We are talking about a therapy that is already FDA approved and works. Works well. The industry that has developed around DBS is staggering, but acknowledging the importance of basic science, we need more translational research. I realize that many of you are forming careers out of DBS grants; but how many of you have actually sat back and asked, how in an applied science manner is what I'm doing going to make QoL better for DBS patients? I would encourage you to have that vision for each of your projects.

A few specific comments: 1. I agree completely with Margaret's comments about programming. After placement of the electrode, programming is what will finally determine a patient's QoL. There are a paucity of programmers who seem to truly understand the physiology and anatomy enough to not try the "shotgun method" for IPG settings. I wonder if out of the 30K+ DBS patients worldwide, what percentage have incurred brain surgery but are still not incurring optimized QoL because of subtherapeutic programming. Because there is a shortage of these experts, and Neurologists/residents are not being trained in DBS adequately, the DBS patient community desperately needs expert system programming algorithms. 2. Clinicians, consider DBS earlier and in your younger patients. Again PD is about QoL. Motor complications from dopaminergic therapy and disability are not about QoL. Contrary to oft-quoted study results, patients find dyskinesia socially and physically disabling; would you want to be dyskinetic when there was alternative you could at least consider. So consider at least recommending the DBS procedure to good surgical patients before they develop motor complications and/or are disabled. You might be surprised how many patients are willing to take the small surgical risk, and at the dramatic outcome in the right patient. 3. For about a third of bilateral DBS recipients, the most troubling post-DBS symptom is speech dysfunction, particularly hypophonia, dysarthria and poor articulation.

My observation: this is seemingly at-least partly related to a shortness of breath or more specifically a diminished ability to take a deep breath to use in vocalization; there appears to me to be almost a dystonia of the vocal cords. It also appears to be a bilateral phenomenon or at least a right brain phenomena (I didn't have it when I had only the L STN DBS), and is definitely voltage-related. I trade-off my voice for tremor control: I can knock out my tremor if I turn up the voltage but I can't talk. During my bike ride in Iowa: turned DBS off for four hours of intense riding on a tandem bike; the exercise quieted the tremor and my voice was normal - a great day. Not all DBS patients have speech dysfunction so possibly it is electrode-placement dependent. I have heard of surgeons testing for voice dysfunction during the surgery, which I would advocate for. 4. As most of you know, there is a somatotopic structure to the motor and sensory tracts in the CNS. Typically, the face and arm fibers are closer in proximity to each other than the leg fibers. This held true for my tremor relief too: it's virtually perfect in my face and arms, but less so in my right leg. It would be ideal for you to understand the detailed somatotopic anatomy of a DBS target enough for a tailored electrode, and/or tailored electrode placement and/or possibly designer field generation capability such as with current beamforming and steering. 5. Tremor breaks through with stress. Hard to get too involved emotionally with my sons sports competitions. Hard to watch scary movies. Hard to take on big responsibilities. Others find their most prominent pre-DBS symptoms break through similarly. DBS is great, works the same way 24-7; unfortunately life is not the same 24-7. As a former engineer I can imagine a closed loop system where the programming changes in real-time based on external (e.g., tremor detectors) or internal stimuli (e.g., biosensors). This would be another QoL enhancer for patients. 6. Finally, soon after having the 2nd DBS turned on, my balance was obviously affected. For example, I would reach over to a counter and fall over; this was entirely new and directly temporally related to having bilateral DBS. Like my comments about speech, better understanding of anatomy related to balance problems would be quite beneficial for electrode placement and/or programming. On an interesting "rewiring" note, I was able to completely rehab this by walking different directions on a treadmill and doing Tai chi (though not at same time!). This is by no means a comprehensive list, and I do not claim to speak for all DBS patients. But maybe one example I gave of a need, inspired one person out there to figure out a solution and increase many thousands of DBS patients' QoL. Thank you for all your efforts.

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