Alone with my thoughts

Well it has been a few weeks since I have written and now the date surgery date is just around the corner (9-30-08). At this point in the process all the pre testing is over, the insurance companies satisfied that it is a necessary procedure and I am now alone with my thoughts. I am not alone in the literal sense for I have been blessed with an overwhelming out pouring of support from friends and family and I have the greatest support from my bride anyone could ask for. Alone with my thoughts is I now have nothing more before the surgery to offer other than what is on my mind at this moment.

I have over the past several months during this pre-operative journey been in contact with many who have gone this path before me with great courage and have gone head to head with Parkinson’s and say I will not let PD win! So what makes me different than these others, why have I received this overwhelming support? From my point of view I only differ in that I have chosen to share my journey in a more public manner. Additionally I was honored to be asked to share my story by being part of a documentary feature film that is being produced to raise funds and awareness for Parkinson’s and Alzheimer’s.

I want to mention some people who have given me the courage to face this procedure by sharing their stories with me of both the good and the not so good things they experienced with having the DBS surgery. I would like to publicly thank James, Gary, Mike, Gaylund and Cindy for sharing their stories and giving me the strength and inspiration to move forward with my decision to have DBS. These folks have faced this procedure and are doing great; they also individually inspire me by just having moved on after DBS and are still doing great things for the PD community.

I have been asked almost on a daily basis if I am nervous about the surgery and most people are surprised by my answer of no. It may be hard for some people but as I have told those that have asked, I am confident in what I am doing why I am doing it and who is doing it. I have made some poor decisions in my life and some have carried heavy consequences. Then I have made many choices that have enhanced my life in ways I could have never imagined. As this day approaches I have prepared myself to accept whatever outcome I have, I am confident I will look back months from now and be satisfied with the relief of symptoms the DBS provides. I also understand as well as I ask anyone who reads this to understand that THIS IS NOT A CURE! This procedure is a means of relief of the symptoms and the Parkinson’s disease will continue to progress even though the outward symptoms may not be as obvious. But I am also hopeful that with the efforts of Focus on a Cure and all the other organizations that are working toward finding a cure by the time the progression of my PD has surpassed the benefits of the DBS there will be a cure available.

I will probably post one more blog before Tuesday but I hope this blog has helped even one person have the courage to do whatever is necessary to take control over PD or what ever physical demon they face then it was worth it. I know it has helped me by being able to express and share my experience to this point and I look forward to blogging for years to come about the great strides we have made toward a cure.

Stay Focused,
Ken

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

Baseline On/Off testing

Wednesday I took my last dose of Parkinson's medications I would have for nearly 24 hours. I know your probably thinking why would I want to put my self through that, several times during this 24 hours I thought the same thing.The reason was that I was scheduled for what is referred to as on/off testing.

The concept is basic, you are off your medication for a minimum of 12 hours and you are put through a battery of testing similar to that of a initial visit to your Movement disorder specialist. The test include the finger taps, the heel taps, observed walking and rising and siting in a chair all while being video taped. Now for those who have never gone through this it may sound pretty easy and you might be thinking what is the big deal with a few taps and some walking. Even if you have PD and have been through these tests before typically they are not too stressful, challenging but mainly routine. Well let me say this, I have many hours of what is referred to as "off" time but I still have some baseline of medication in my system of which I was not aware of until being "off" for 24 hours.

Being without medication for this time period revealed to me the true status and progression of my Parkinson's. I was unable to sit still, my tremors were so sever they were 3x as painful as they are in my off periods. I was unable to rise from a chair without great difficulty or with assistance and the stiffness in my neck was extremely painful. If I was not convinced that DBS was a good option this 24 hours surely made my decision much easier.

I have been seeing my MDS for nearly 5 years now and she has always categorized me, utilizing the Unified Parkinson's disease rating scale(UPDRS)http://www.mdvu.org/library/ratingscales/pd/ category one on the Hoehn and Yahr scale.

Hoehn and Yahr Scale

Date: 4/26/2004

0 - No visible symptoms of Parkinson's disease

1 - Symptoms on only one side of the body

2 - Symptoms on both sides of the body and no difficulty walking

3 - Symptoms on both sides of the body and minimal difficulty walking

4 - Symptoms on both sides of the body and moderate difficulty walking

5 - Symptoms on both sides of the body and unable to walk

This scale is a modified version of the scale published by Dr's. Hoehn and Yahr in: Hoehn MM, Yahr MD. Parkinsonism: onset, progression and mortality. Neurology. 1967;17:427-442.
E-MOVE Editor: Richard Robinson, NASW, WE MOVE

I thought at times how can that be since I feel so many more symptoms during the course of the day. I have a theory on this which I am sure most PD patients do in that when we see our MDS we are typically "on" and they evaluate us from that condition and from our explanation of "off" times. Well after being evaluated in a true off period I have been re-categorized as a 2.5 on the Hoehn and Yarh scale, which makes more sense to me, I am not happy about that but it makes sense.

In addition to these functional test I had with Dr. Verhagen I also saw the Speech specialist Dr. Wang and Dr. Bernard, the neuropsychologist for the practice. The speech session was relatively painless but interesting. Dr. Wang and her PA checked my hearing levels and then put me through a series of voice projection and inflection tests looking for deficits. I was told my left side hearing was not able to hear higher tones (which Ann says is why I have selective hearing :)). I also have a decrease in my voice volume and a deficit on my left palate effecting my speech slightly. Dr Wang mentioned that since my DBS will be for my left side meaning the implant is on the right there is a greater chance my volume will improve and with some post op therapy I can also overcome the palate deficit.

In between the off testing and the on testing I was given three Sinemet tablets (one more than norrmal dose) and allowed to rest for one hour. Finally the medication kicked in and I went back to the video room for the "on" testing, which is basically a repeat of the first test to evaluate the differnces in the two stages. As I undertood it if you have a certain percentage of improvment in your symptoms with the medication they say this is the releif you can expect with the DBS device. My improvemnt was significant and I was deemed a good candidate for a unilateral procedure. I have a deficit on the right as well but it was determined it was not severe enough at this point to have bilateral DBS. I was told I will most likely need the right side done within the next 12-24 months but maybe farther out than that, ther is no way to predict.

The last three hours were spent with Dr. Bernard, the neuropsychologist, a pleaseant gentleman, but after three hours of testing I had had my fill of Dr. Brnard. During this time frame you are put through memory and cognitive testing as well as evaluation of your state of mind (depression, suicide intentions and overall happiness state). This is a very mentally exhausting session and I was glad it ended. I was sent home with a 500+ question personality test to take and scheduled my appointtment with Dr. Roy Bakay the neuro-Surgeon for Moday the 11th.

Next: The visit with the surgeon when reality sets in!

Getting my affairs in order (finally)

At the age of 43 something like this should have been completed and filed long ago, but it was not. Like many people I never thought of planning for the ultimate end we will all face some day because I never thought it would be a possibility before at least age 125 (lol).

Well now with the possibility of DBS surgery I have been forced by circumstances that age 125 might not be realistic (It takes me awhile to see the obvious). So began the uncomfortable days that turned into weeks of uncomfortable dancing around the subject with my wife. Almost daily one of us would mention that this really needs to be done and we would discuss a few points but always ended up changing the subject avoiding the real discussion; what are my wishes should I reach an untimely death or life long incapacitation. Several weeks went by and the same dance continued with no action being taken on my part until the day I realized what it meant. Preparing for an unexpected tragic event does not necessarily increase your chances of that event happening. I think deep in my mind I thought if I prepared my will and advance directive I was increasing my odds of something going wrong with the surgery. Of course I now see how ridiculous this is, that would be like saying if I buy car insurance I increase my odds of getting in an accident.

When I finally decided to complete these documents I just needed to ask Ann one question but I did not want her to know I was going to complete the process the next day by myself. I knew this was something that if she had a choice would not want to actively help in completing. So I asked her in a vague conversation like the many we had before about this subject, what were her thoughts or wishes if something should happen. She gave me the answer I needed to finally as Nike says “Just do it". She told me that on what could possibly be the worst day in her life she did not want to make such key decisions as to my medical condition or final arrangements. I respected that and I knew what I needed to do and the following day it was complete.

When you create a will or and advance directive (living will) whether it is done because your facing a complicated surgery or your just being proactive it is not an easy thing to do. I spent the better part of a full day completing the questionnaire on http://www.legalzoom.com a site I found to be easy to use for these types of services. I found the process both emotionally draining and personally satisfying that I have taken the steps to ease the emotional burden on my wife should the day ever come she has to utilize these documents. In regards to the emotionally draining part: this activity forces you to reflect on your life to date and evaluate relationships at that specific moment in time and how this affects your choices and decisions. I personally have some very complicated family relationships that had to be addressed in this process and it was not easy but it has lifted a burden off of me that has been there for many years.

So to close this entry I wish that if you learn anything from my experience do not wait until you are forced by circumstance to have your affairs in order.

Stay Focused,

Ken

Next entry: The baseline testing process

The MRI

I went to have an MRI of my brain as a basic mapping image for the Neurosurgeon. Now for most of you this would not be any type of adventure but for a claustrophobic wimp like my self it was very stressful.

I do not like small places and even in a crowded elevator I begin to break a sweat, so imagine me in an MRI tube "NOT". I spent several hours searching for an alternative to the standard MRI and cam across Upright MRI in Deer field, IL. This is an open MRI unit that you actually sit upright in like your in a chair. The radiology purists state the image quality from these are not as high quality as those from a standard unit, but for my purposes of a baseline scan it was acceptable. Though I was still a bit cramped between the magnets I was comfortable enough to clam myself to be still for the 40 minute exam.

I am told that the pre-operative MRI I can be sedated for the day day of the surgery. I find it humorous that I am not truly concerned about them drilling holes in my head and inserting wires while I am awake but I have to be put to sleep to have an MRI. I guess we all have our stranger phobias.

My next entry will deal with the emotional experience of having your affairs in order.

Stay Focused,

Ken