So now were here, what do we do now?

The decision process can be a daunting task or a comfortable satisfying process. If you have come to the point in your Parkinson's journey where a DBS consultation has been recommended you most likely have some significant deficit your dealing with. For me it is a severe left sided tremor, and I mean the whole left side. I also have a mild tremor beginning in my right hand.

Now understand everyone has different symptoms of PD and not all of them can be controlled with DBS. In a way I am fortunate to have tremor dominant PD as this responds well to DBS. I am not a physician so I cannot suggest what will or will not be helped with DBS. What I can say is what I was told by my neurologist that if the levodopa does not control a symptom it is unlikely the DBS will control that symptom.

I must say after the initial shock of hearing that I should consider DBS our decision process was relatively painless. Now I say our decision because this is not something that should be a unilateral decision (in my opinion) as it will effect more than just me no matter the decision.

So here was my thought process:

I first asked Ann "so what do think?" She responded as I expected and said if you think this is what you want I will support you either way. Of course this did not help because I wanted her to say "Have the surgery you cannot go on like this".

Of course I know she would never pressure me in one direction or the other but it would have been a way for me to not have to think all of it through. So I began to make a pro and con list for the surgery here is what it looked like for me.


PRO
1. I could get significant relief from my tremor on a 24 hr cycle
2. I could potentially continue to work full time as I do now for another 5-10 yrs
3. I could avoid having to file for disability in the very near future
(this is not a poor choice but for me at 43 I am not ready to face it yet)
4. I would have some control back in my life if it was successful
5. I could be fully independent for some time pending progression
6. I could continue to pursue the goals of Focus on a Cure with more energy
7. My financial situation would remain stable and possibly get better by continuing
to work full time

CON

1. It is brain surgery
2. It would carry several life altering or ending risks
3. It will keep me off work for 4-12 weeks putting a financial strain on us
4. It will cause stress for my wife and family as I go through the process
5. Did i mention it is brain surgery? :)


So as you can see the benefits well outweigh the risks in my opinion and on my list, yours may look different. My decision is made and it is supported by those whom opinion I cherish. So now we know how I got here I will post some of my personal thoughts on PD in general and how I/we have adapted to this intruder in our lives.

Stay Focused,

Ken

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

The meeting with the Neuro-surgeon:

On the 11th I went with Ann to visit the surgeon who is in this long process the final decision maker as to whether or not you are a candidate for DBS. I have been told though if you have been passed all the way through to this point with the surgeon the decision has been pretty much been made. The Neurologist is the main decision maker as he was the one who performs and evaluated the functional testing.
As we entered the surgeons I was for the first time a bit nervous. Not so much about the procedure but just that this was one more person who could potentially put the brakes on this procedure. Now I know that this is not a cure nor is it guaranteed to be a success and there are major risks with it. For me it is like getting that free game on the old Atari racing game where if you hit a certain score you get extra laps; DBS is my extra laps, another opportunity to operate at a more finely tuned performance level not for ever but enough to make it worth the risks.

Ok back to the visit, Dr. Roy Bakay of Rush University Medical Center in Chicago is my surgeon. Dr. Bakay is highly respected and well published in the field of Neuro stimulation particularly for Parkinson’s tremor. So I am full y confident I am in good hands and had the utmost confidence in his skill and efficacy record. Researching who is going to perform your surgery is an important part of the decision process and should not be taken lightly. You should ask the hospital for the Dr. profile as well as doing an internet search on his success rates and adverse event rates.

Dr. Bakay came in the room; a very professorial looking gentlemen with a direct approach. The appointment began with the general interview questions and review off the testing results from Dr. Verhagen, the neurologist who will participate in the procedure. After the interview I was examined starting with the typical Parkinson’s testing of finger taps, hands open and closing, heel tapping, and the usual stuff we do regularly with the Movement disorder specialist (MDS). The additional testing involved the doctor examining my skull shape for irregularities looking into my eyes with the light and multiple sensory tests using a tuning fork and a pin. These were to evaluate my sensation in my feet, toes, fingers and my ears. I must have passed because he then began to explain the process of the procedure. Since I am not a physician I will not give my interpretation but rather post another entry with information from a qualified source.

The end result was that I am scheduled for part one of the surgery September 30, 2008 followed by the programming pack in the chest wall on October 8, 2008. So it looks like those will be a couple of difficult weeks. For those of you considering this procedure let just give this advice, it is a very personal decision and you are the only one that is qualified to decide if it is right for you. There are right reasons and wrong reasons to put yourself through this process so make sure you do your homework and search your soul to make sure you are doing it for the right reasons. On a final note please keep our friend James (BIGBOY RACING on MySpace) in your thoughts and prayers as he is having his DBS on Monday 8-25 and we wish him the best for a successful procedure and a speedy recovery.

Stay Focused,
Ken