Where am I and how did I get here?

I am sure many of you have a question on your mind you would ask of me or anyone who has made the elective decision to let surgeons implant a wire in my brain then hook that up to a power pack. I am not sure the question that comes to your mind while you read this but the first things I get asked is are you scared and have you tried XYZ therapy?

Now I would be lying if I just said no, let’s be realistic I am human and there are fears associated with any surgery, heck I get scared going to the dentist. I have more fears of not having the surgery then I do of actually going through the procedure itself. Typically I am a realist, a pessimist sees the glass a half empty, an optimist as half full as a realist I know if I stick around long enough I have to wash the glass. This where my fear comes in that until I am in the operating room I will be nervous that some unknown entity will pop up and the procedure will be put on hold. Now I do not see that happening but that is a realistic fear I have. In regards to the procedure itself I am not afraid, concerned but not afraid. The key here is that I have not entered into this decision lightly or alone, it was a joint decision made with Ann as all of our decisions are made, together.

When I was first diagnosed with Parkinson’s in late 2004 the discussion was how long the MDS can keep me off of medicinal intervention. The fact that I was only 38 presented the issue long term therapy that would be effective with minimal side effects. It was not until early in 2006 it became apparent to my wife and I as well as Dr. Shannon, my MDS that the time had come where the tremors were interfering with my every day activities to the point I needed to address them. I began on a small dose of Carbidopa/Levadopa 25/100 therapy and within a few weeks I felt great. I was getting relief for 4-6 hours and with taking the medications every 4 hours the overlap made the Parkinson’s a non issue, for the time being. I believe this is called the honeymoon period and it did not last long before other medications were thrown in the PD “cocktail” first it was Amantadine then Mirapex and the doses were slowly creeping up as the tremors found new outlets to materialize at and intensify in the old places.

It was now mid 2007 and the first time DBS was briefly mentioned during one of my appointments with Dr. Shannon as I was trying to convince her that I needed more of the Levodopa so I can function. At this point the tremors had made a full assault on the left side of my body and the 4-6 hours I had enjoyed on the honeymoon was getting to be more like 3-4 hours. I lobbied hard for more Levodopa but in the end Dr. Shannon plainly explained that at the age of 41 increasing the medication to the levels needed to control the tremors would produce dyskinesias that would be worse than the tremors themselves. So it was agreed that I would adjust my Mirapex and meet with the psychiatrist to address my anxiety and frustrations with the advancement of Parkinson’s.

I beganto see Dr. Danahey later in 2007 to see if there was something she could uncover that would help me ease the anxiety and frustrations I faced as the rest o my life kept moving forward at what seemed like light speed. It was during this time I was making changes at work as well beginning to ramp up Focus on a Cure with Ann. The result of my discussions with Dr. Danahey was that I was not losing my mind, rather I was experiencing some very “normal” Parkinson symptoms and they could be addressed with again more medication (are you seeing the trend here?). So with a bit of skepticism I increased the dose of Effexor XR eventually to 225mg per day. I was pleasantly surprised that this helped considerably in that my anxiety and frustration with my tremors and other PD symptoms decreased significantly. The symptoms did not go away but I was able to move through my day with less stress over them. Now it is April 2008 and Focus on a Cure is in high gear and I am traveling 3-5 days a week for my full time job and trying to still be with my family and not be stressed and irritable. I thought I was making it work but apparently this was a losing battle for me. On our next visit to Dr. Shannon after our usual download of how things have been going she became more serious than her usually lighthearted approach and said that we should consider a consultation with Dr. Verhagen about whether DBS was an option for me. For the first time in the Four years I have been going there I was left speechless and just stared at her and tried to think did she really just say brain surgery?

Well my flight is almost over and my PC battery is fading but I will continue this discussion next time.

Stay Focused,
Ken