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

The meeting with the Physician assistant

Well now it was Friday and I had some time to absorb the idea of having brain surgery. I was not feeling apprehensive but I was a bit uneasy just because I have read a great deal on this and I thought I knew what to expect.

As I looked down the hallway I saw Peggie coming to greet me. She is a pleasant young lady who is very personable and not overly clinical in her approach. I was put at ease very quickly by her demeanor. She began by explaining the procedure I would follow in the coming months to prepare for the surgery.

Now normally it would not take several months but I have so many travel commitments for work through the end of August and then a vacation in early September. So with all that I have decided not to have the surgery until I return from vacation in mid September. Some do not agree with my decision but after all this is somewhat of an elective procedure and my Parkinson;s will still be there in September (unfortunately).

So as we began o discuss the pre-operative procedure I realized she was speaking to me in very laymen terminology which sometimes for me is harder to understand. I explained to her my experience in the medical field and my current position that deals with clinical procedures and research daily. This made the conversation more comfortable, at least from my side. so here is what I was told was the testing I had to go through prior to the actual surgery.

1) You will be seen in the morning, before you have taken any Parkinson medication. In fact, the last dose of Parkinson medications should be taken at least 12 hours before the evaluation takes place; hence, you are scheduled to be seen at 8:00 AM, so your last dose of Parkinson medications should be no later than 8:00 PM July 30th. Of course, you should continue to take your medications for other diseases, such as high blood pressure, diabetes and so on. It may be difficult for you to come in before taking any Parkinson medications, but please understand this is essential for a proper evaluation. As you may be aware, transportation from your car to the clinic by wheelchair is available. As we discussed, it may be worthwhile to stay in a hotel close to the hospital for the night prior to the evaluation.

2) The first part of the evaluation will take about 1 hour. Thereafter you will be given an appropriate dose of Sinemet, and about 1 hour later, after the medication has become effective (‘kicked-in’) the same evaluation will be performed once again. The off/on evaluation takes approximately three hours.

3) You will then see the psychologist for an evaluation that could take as long as three hours.

Following these appointments, Dr. Verhagen will make the final determination if you are an appropriate candidate for DBS surgery (Dr. Verhagen has already told me I am a good candidate). If that is the case you will also need to make an appointment to be evaluated by Dr. Bakay, the neurosurgeon, and discuss any pre-operative testing you might need (such as a chest x-ray, EKG, and lab work.).

I was then to schedule an MRI of my brain for a pre-operative map for the doctor. I will discuss this experience in the next blog. Just a teaser I am VERY VERY Claustrophobic so just imagine how that test went.

Stay Focused,

Ken

Monday June 17, 2008--The consultation

This is my first attempt at blogging so bear with me.

Today I went to the Neurologist at Rush University in Chicago to have my first consultation and discussion about Deep Brain Stimulation surgery (DBS).

Ann (my beautiful bride) accompanied me as she typically does for my Neurology appointments, this way I do not forget to tell her something important (I forgot lots lately). We entered the waiting room to grab an seat and as usual I am the youngest person there, which typically draws some stares and looks of pity from the older patients.

Leo Verhagen, MD, PhD Medical Director at the Rush Movement disorders clinic came down the hall to greet us, and so it begins. We sat and things began as usual with introductions and a review of my chart and the massive list of medications I take daily.

My Parkinson's medications (I take many more for other issues)

1. Sinimet 25/100mg x2 tid
2. Mirapex .25mg x1.5 tid
3. Amantadine 100mg x1 tid

Dr. Verhagen is a very pleasant professorial looking gentleman with a great sarcastic sense of humor, one that i appreciate. Most of the appointment was the usual neuro tests of stomping you heels, opening and closing you thumb to fore finger ect... Then he went on to explain the procedure of evaluation and pre, intra and post op for DBS (I will cover in later posts.

After about an hour appointment he told us he felt I was a good candidate and should see many benefits from having DBS. It was at that moment it hit me "I am going to have brain surgery!" As i had hoped Ann was strong and supportive and I only was in shock for a few moment's before I decided it was the right thing to do. I had originally thought I might document this on film but on the way home after some thought I felt this was the best way to share the experience with others. Blogging allows me to reflect a bit more and describe what I experienced in a clearer manner than having someone just watch and try to interpret my feelings.

Next appointment is Friday with the psychiatrist and the Surgical PA.

Stay Focused,

Ken