Changing gears-- After a long battle with Parkinson's...

For those of you that have read my blog regarding my DBS experience I appreciate your involvement, comments and good wishes. This week I went for a "tune up" one of several I will have over the next year. It is a basic appointment to evaluate the effects of the stimulator as balanced with your current regiment of medications.

Changing gears, although this DBS has been a major event in my life and sharing it with you have been a positive experience for me I no longer want to dwell on it as it is time to move forward. So I am changing gears and the blog will be from this point on a realistic look at life with PD and a voltage induced brain.

"After a long battle with Parkinson's..."
I am a Parkinson's news junkie, I receive Google updates on PD news every 15 minutes in my email box. Lately I have noticed a trend that I find disturbing. When I first became addicted it was because my appetite to learn everything I could about this un-chosen partner in my life was veracious. Then as Ann and I began to develop Focus on a Cure I felt compelled to stay informed on the latest clinical studies, breakthroughs and controversies to be a better resource for those who look to Focus on a Cure for support. The headlines used to read like salesman's handbook of power words; NEW, EXCITING, BREAKTHROUGH, PRIMARY END POINT REACHED, PERSON... WITH PARKINSON"S ACCOMPLISHES....

If you frequent certain circles in the PD community you still hear of these exciting moments and news you hear of is positive. Lately I have been discouraged by the Google alerts headlines I have been receiving most no start like this (insert a name here) After a long battle with Parkinson's...

First let me say I have the deepest sympathy and respect for those that have fought the good fight against PD or any other disease and have left this world still fighting and it is because of these people who after a long battle with Parkinson's have lost the fight and gone to rest that we must continue to be vigilant in our efforts to do everything we can so this battle can be won!

10 years ago many headlines read " After a long battle with Breast Cancer..." and that fight was vigorously fought and today though they may have not won the war but they sure have won some major battles. There are more women and men today who start their stories or headlines with "I am a ___Year cancer survivor" What a wonderful word SURVIVOR.

Survivor is defined as:

• a person who continues to function or prosper in spite of opposition,hardship, or setbacks
  
• one who lives through affliction
  
• one who outlives another
  
• an animal that survives in spite of adversity
  

Too many stories that discuss Parkinson's or people with Parkinson's whether they are accomplishing great things or they have been recognized for a good deed are refered to as "sufferers" I for one have always stood by my statement "I do NOT suffer from Parkinson's I live with it." Just recently there was a article in People magazine about Michael J. Fox and several times during the article the author used the statement "suffering from Parkinson's" now I have followed Michael's life with Parkinson's and have had the good fortune to meet him on several occasions and have a conversation with him about this. I can tell you first hand this is a man who does not suffer from Parkinson's he lives with it, he fights it, he challenges it he makes Parkinson's fight to stay in his life, but I can assure you he does not suffer from it. Michael J Fox is the most recognizable face of Parkinson's and a great example of how we should try to live as I described above of how he faces Parkinson's every day.

Suffer or Suffering is defined as:

• to tolerate or allow; to undergo a penalty, as of death;
  
• to sustain injury, disadvantage, or loss;
  
• To appear at a disadvantage;
  
• an unfortunate person who suffers from some adverse circumstance
  

So now go back a re-read the definition of Survivor and look at how Sufferer is defined and every night you lay your head down BELIEVE you have not suffered but you have SURVIVED to fight another day!




Stay Focused,

Ken

Courageous or Resolute ?---- Post programming

Well it has been a little over a week since my neurotransmitter was turned on and calibrated and things are still going well. October 28th I had the opportunity to experience one of most exhilarating experiences in my life. For the first time in 5 years my body was at peace with itself and I was in control. As I entered the exam room and sat down I was visibly wracked with tremors and very nervous, this was one portion of the process I really had no real expectations for. I wanted to be open to what ever was going to happen so I could concentrate on what my body was telling me.

Peggie, the Physicians assistant placed a transmitter over the stimulator pack that was implanted in my right upper chest wall and turned on the small computer it was connected to. Dr. Verhagen my neurologist came in and explained what was going to happen. Just to review, the DBS lead that was implanted has four contacts on it and they refer to them from zero to three. The goal is that two of the four contacts are in an area that they can be stimulated to arrest your tremors with no side effects. In order to make this determination they must test each contact individually, which make for a lengthy session. The zero lead is at the deepest point in the brain with the four lead being in the most superior position. The anticipation is that contact zero, one or two will be able to be programmed with enough voltage to arrest the tremors with out producing a consistent side effect such as tingling, facial twitch or speech impediment of any kind. After each lead is set at this point the Dr. observed my walking at a hurried pace down the hall way being careful to note my arm swing activity and gait pattern. this went on for about two hours at which point my wife and I sat in amazement as I sat there in complete and utter stillness, it was one of the most chilling and exhilarating moments of my life.

As we went throughout this process my wife later told me how she was amazed to watch as the tremor slowly disappeared as they adjusted the voltage. What I found interesting was the last flicker of tremor or muscle twitch to be controlled was at the lateral border of my left hand along my index finger. The reason this stands out is this is also the first sign of Parkinson's I noticed some 5 years ago.

I left the office in the most peaceful stress free mood I can ever remember, although I did have a major headache and was very fatigued from the whole experience. I was told to reduce my 25/100mg Carbidopa/levodpa med by 1/2 tablet per dose essentially cutting my daily dose by 1 1/2 tablets per day. After about a week I began to notice that the tremor was creeping back this caused some concern and frustration. After speaking with the PA at the neurologist’s office I was told it is not uncommon for this to happen as it is a process of balancing the level of medication and the intensity of the stimulator. I will be returning for a "Tune Up" in early December and most likely one or two more times to get everything in pristine working order.

“Courageous or Resolute?” I have received an appreciated so many emails and messages during this process from people and many of them mentioned me being courageous in having the DBS surgery. Though flattered by your kind words I do not see myself as courageous rather resolute in my decision to have this procedure.

Courage is defined as the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear; bravery.

Resolute is defined as firmly resolved or determined; set in purpose or opinion, characterized by firmness and determination, as the temper, spirit, actions, etc.

Prior to me having DBS nearly 40, 0000 other people worldwide have had the same procedure and faced the same potential consequences. Being 40,0001 do not qualify me as courageous those that had DBS when it was still a new procedure and not as commonly performed as it is today these folks were courageous as they were going into something that was unproven and untested for long term outcomes In being resolute I did my homework on ht e procedure, met and spoke with others who have had the procedure, weighed the pro and con factors involved and made educated calculated determined decision to have the procedure understanding all the risks involved deciding for me the benefits short and long term far out weighed the risks.

As I write this blog it is the end of the day on Veterans day I think of all the Men and Women in the military currently serving and those who have served and I say now that is COURAGE to face the unknown every day and never know if you will see tomorrow. It is because of their courage I was given the freedom to be resolute and calculated in my decision to have DBS, no matter what decisions we make freely every day it is because of the courage and sacrifice of a veteran or active duty person in the military we are FREE to do so.

It can never be said enough Freedom isn't free----Thank a Veteran

19 days Post DBS lead implant

Day 19 Post op,

I know my wife Ann has given you some details along the way but I wanted to give you the official update after my appointment with the surgeon Thursday. Beginning with the surgery on 9-30-08, the procedure went well as expected and without complication. From a clinical view point it was one of the most fascinating experiences I have ever had. In being awake I remember every second of the procedure and was interacting with the staff the whole time. One thing I was surprised about that after all my research and all my conversations with other DBS patients and doctors no one mentioned the steel ball ear plug portion of the halo/frame procedure. During this portion I asked the surgeon why no one ever mentioned this part he told me it was because most people do not remember it. Well let me be truthful I remember ever second of it and I told him I was going blog about it and let the secret out.

First let me say this is a necessary part of this portion of the procedure and the explanation of why it was so uncomfortable is logical but none the less it was painful for a short time. After your head is shaved and cleaned with a sterile solution the frame I s placed over your head and it was as another friend had described like wearing a football helmet and looking through the face mask, this thought made this part more comfortable for me as it was something I could relate to. At this point the chief resident mentioned steel ear plugs to which I responded "for what it is going to be loud" he stated that they use these steel ball ear plugs as s centering point for the frame placement he further explained that this was an area that could not be anesthetized and it would be uncomfortable. It was then the word uncomfortable took on a whole new meaning. They began to tighten these earplugs from each side essentially like a vice with your head in the middle. They continue to tighten until the frame is stable on your head at which point the surgeon made finer adjustments based on the access point and best position for the working comfort of the surgical team. Each time the frame was adjusted it was VERY uncomfortable but not unbearable. It took about three minutes to get the final position at which point the administered Lidocaine and marcaine at the four entry points where the frame would be screwed to my skull for stability. Lidocaine numbs the area while adding marcaine elongates the effects of the Lidocaine. Other than a little pinch from the shots this portion was not painful. The remainder of the surgery was without pain other than the discomfort of being in the same position for many hours of surgery.

Following surgery other than being very sleepy, the following morning after all the ICU monitoring equipment was removed so I could be transferred to a regular neurology floor I was talking with my wife and I had a severe Gran Mal Seizure (A grand mal seizure — also known as a tonic-clonic seizure — features a loss of consciousness and violent muscle contractions. It's the type of seizure most people picture when they think about seizures in general. Grand mal seizure is caused by abnormal electrical activity throughout the brain, so signs and symptoms typically involve the entire body1) which set me back a couple days. Following a boost of Ativan & suctioning I was rushed for a CT scan and then an MRI later that evening to rule out a bleed. After evaluation by the neurology radiology team it was determined that the area of concern was post operative swelling around the tip of the electrode and they fell this is what set off the seizure, The average rate for this type of post op event is 1.6% lucky me this is why I do not do well in Vegas playing the odds. I spent one more day in ICU then was sent to the regular neurology floor for observation during which time I had several episodes of what has been termed Focal seizures. I would become unresponsive to questions from the staff and family for 1-2 minutes associated with facial twitching; this prompted them to start anti-seizure medication which really messed me up. This medication just sucks every ounce of energy you could possibly have, I spent the next 2-3 days sleeping 20-22 hours a day and the simple task of going up the stairs was like climbing Mount Everest.

Most of this past week I was having these focal episodes and was confused about most basic things such day, time, and I kept repeating questions not realizing I had already asked them ( I know this is not much different than most days J . Yesterday I went to the surgeons to have the 23 staples removed from my scalp and to be examined. The Dr. was pleased with my progress in that I had not had a focal episode in several days. I am weaning off the anti seizure meds now and should be off of them by Sunday. This will hopefully get me back into a more normal sleeping pattern. Ann has been given the green light to go back to work as long as I do not do certain activities unless she or someone else is with me just as a precaution.

The second part of the procedure on 10-8 went without incident this was where they implanted the programmer in my right upper chest and connected the wires from the implant to the programmer/generator. I am going back on 10-28 to have my programmer turned on and adjusted to control my symptoms; this will be one of several programming visits over the next 2 months as they downgrade my oral medication and increase the stimulation.

I inquired retuning to work in the next week or so with the Dr. and after he finished laughing he stated due to the post operative complications he could not consider re-evaluating this until the end of November I have been slowly spending some time on the computer but currently after about an hour I have to give up due to severe headaches and difficulty concentration on what I am doing. So over all things are going well but slow at this point and I anticipated not being back to work full time until January.

Our film crew was given unlimited access to my procedure from start to finish and is believed this is one of the more detailed documentations of a DBS procedure to date.

I also want to take this opportunity to thank all of my friends and family for the support over these past weeks as well as the support of Ann of without whom I could not have gone through this without her strength. I told her as I was walking away to surgery that I was going for the easy part and it was her that was facing a difficult day of waiting. it is easy being the patient you just follow the rules and put faith in the skill and care of the surgical team. I know Ann is thankful for all the folks that stopped by the hospital to sit with her for a time it was a comfort to have such great support.

1. http://www.mayoclinic.com/health/grand-mal-seizure/DS00222

Stay Focused,

Ken

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