Being Thankful: A client's story of Parkinson's Disease and DBS

Being Thankful

By Mike W.

I wake up at 6:15 every morning to take medication.  Recently, I have found myself habitually tapping my implant device.  It is reassuring to know it is there.  It was implanted during my recent brain surgery.  When I tell people I had brain surgery four months ago the general reaction is sympathetic.  There is a preconceived notion of a long and painful recovery process.  This may be true for some surgeries, but for deep brain stimulation (DBS) it is the opposite. My recovery process was short and painless.  From the moment I woke up, I felt like my life was restored.  It was not a new me that I found, rather it was the old me rediscovered.

For nine years I battled the progressive deterioration of PD.  For the first years I was able to manage my symptoms with medication.  I cannot remember exactly how the disease progressed.  It happens in small increments every day.  It feels like an unstoppable force that periodically gets strong enough to knock down another defensive barrier.  One day you notice that something is more difficult to do than it used to be.  Some things that I discovered at different times and not necessarily in this order was getting dressed, loss of sense of smell, inability to move in bed, and freezing episodes.  Being stiff is uncomfortable, being frozen is horrible.  At each threshold, I would modify or increase my medication to try and minimize my off time with the least amount of side effects.  For me the biggest side effect to the medication was dyskinesia, which is apparently Latin for I cannot sit still.  For the last few years my day was occupied by a fight between being so rigid I could not take care of myself or being so active that I would work up a constant sweat.  I had tried my best not to let PD rob me of my existence, but it was happening anyway.  I knew I needed to do something different or I would become a burden to my family.

Fortunately, there was a light at the end of the tunnel.  I was aware of surgical options, but brain surgery was initially a scary concept.  As my life became unmanageable, brain surgery became less scary.  I began to educate myself on the surgery, speaking with my neurologist, Dr. Jeff Bronstein, talking to people who had the surgery, reading available material and watching the Medtronic’s video.   All of the information indicated I was an excellent candidate, so I took the next step and had a surgical consultation with Dr. Igor Fineman and his surgical nurse, Jennifer Birch.  By this time my emotions about the surgery had moved from being scared to being excited.   The possibility of resetting my progression back five to seven years renewed my optimism.  Nessa (my wife) and I agreed that the benefits of the surgery far out weighed the risk.

On March 12, 2009 I underwent a 3 ½ hour DBS operation to implant an electrode in my brain and an electronic stimulator in my chest. The surgery was very complicated. First a surgical halo was screwed to my head and a CT scan was taken of my skull. Next the halo was screwed to the operating table to ensure that my head would not move during the surgery. A 1/2 inch hole was drilled in my skull and the doctors charted a path to my sub thalamic nucleus (STN) using a pre-op MRI and the CT scan. Following that a wire with an electrode was guided to my STN and I was then woken up. At this point I was asked questions and my movement was tested. It was like going to the eye doctor when you are asked is this setting better than the last one until the best setting is reached. I was then put back to sleep, the 1/2 whole in my skull was closed, a stimulator was implanted in my chest and the stimulator and the electrode were connected through an incision behind my ear.

From the moment I woke up, I felt better than I had in years.  I was not aware of the amount of physical and mental energy that I expended just to get through the day. After eight years of living with PD I had forgotten what it was like to feel good.  For eight years I had fought the impact of the progression of PD on my life. Prior to the surgery it had become increasingly difficult to stay in the fight. I had begun to feel like I was stuck in quick sand, unable to manage the progression. With my new DBS implant I am now able to take medication to manage my Parkinson’s symptoms without the debilitating side effects.  The implant protrudes form my chest as a reminder of how lucky I am.

Over the last weekend I completed a two day survival course in the Utah desert. Along with four friends and three guides we entered the desert Saturday afternoon with 1 liter of water each, no food, no sleeping bags, no electronics, no flashlights, no lighter or matches. We hiked 15 plus miles over the desert sand and rocks. We had to find our own food and water. We slept without shelter on a 5’ by 5’ piece of cloth that doubled as a backpack.  After 36 hours, the eight of us shared a small trout that was caught by hand and cooked over a man-made fire. This trip was both physically and mentally demanding.

When I exited the desert on Monday I tapped my DBS implant with my fingers, looked to the sky and gave thanks.

2 replies
  1. admin
    admin says:

    This is a client of mine who has been wonderfully proactive in doing what he can to improve his quality of life. Mike boxes and lifts weights on a regular basis and claims exercise makes a huge difference. He has one heck of a right hand.

  2. David Morales
    David Morales says:

    Hi Pat, just wanted to tell Mike…………Man can I feel that quicksand. I was diagnosed a little over 2 years ago but sure I was experiencing symtoms 2 to 3 years before that, so I have often thought about but have not talked to anyone about the ( I feel inevitable implant surgery). Very incouraging ,exciting and scary! Talk to you soon Pat. Thanks to you and Mike……………………Nice web site.

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