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