Courage, Tenacity and Love Meet Parkinson's Disease
MAY 25, 2015 LAB RAT
As part of my personal dedication to finding a cure for Parkinson’s I participate in a number of research trials…about 20 research trials. I am part of the Parkinson’s Study Group at the National Institutes of Health (NIH) in Washington DC, which means that I am often tapped to provide data for various research efforts. This past week I flew to DC on Tuesday, spent Wednesday having a cognitive test while off medication in the morning, had my pills, had a 3 Tesla MRI and then had the cognitive test over again, this time of course while on medication. I asked the doctor to share the results of the “Off” and “On” examinations from 2014 and 2015. The same doctor administered both tests. The results were startling to say the least. Remember that the lower the number, the less evidence you have of the disease.
2014 OFF 40
UPDRS 2014 ON 20
UPDRS 2015 OFF 22
UPDRS 2015 ON 11
What could account for a 50% drop in scores in one year, or ANY drop in scores for that matter? After meeting with the doctors at Johns Hopkins and NIH in April 2014 and discussing pros and cons with Dr. Roberts, we decided I would start Sinemet. I had been avoiding it from fear of developing dyskinesia but decided that the risk was worth the probable benefits. My first pill was May 9, 2014, followed by experiments with dosages of both Sinemet and Requip XL. We settled on 3 Sinemet 25/100 and one 8 mg. Requip XL each day. My shoulder improved; my ability to type returned; I could even brush my teeth and hair within two months.
There has been substantial research reported in the last year to the effect that starting Sinemet earlier in the course of the disease is a good idea. It is certainly working for me.
As long as I was at NIH, I was fair game to participate in other research studies. I had the great good fortune to be asked to be a subject for Rick Helmich, a Dutch researcher who is trying to find the locus of tremors in the brain and/or in the arm. Coincidentally, Rick was the first grad student of Dr. Bloem, the doctor who does cycling/PD research in the Netherlands. Dr. Bloem’s video of a patient who couldn’t walk but who could cycle just fine was widely disseminated a few years ago. Dr. Bloem has done some research with Jay Alberts as well. Small world. After doing my physical exam, Rick expressed his astonishment at how little I have progressed in my PD. Thank you cycling and medications!
This research was done with no medication that morning, which meant that I was off meds until noon. I could also have no coffee or alcohol 48 hours prior to the test. Rick and I and Rick’s colleague spent about 3.5 hours getting set up and going through various tests. It was clear from my body responses that there are many kinds of tremor and they are triggered in different locations of the brain. They taped eight electrodes to my arm and I could observe the readout from each one on a screen that looked like it was recording earthquakes. I wore a cap that had many strips of tape on it so they could mark which locations in my brain were responsive to their electrical stimulations. To test the spots they gave a little jolt that felt like someone flicking their fingernail on my head, not totally comfortable but nothing to complain about either. The actual tests involved doing multiple tasks simultaneously, i.e., let my hand flop over the end of the armchair, count backwards from 100 by twos or threes, flip my hand up to a rigid/fingers extended position when told, relax hand when told, name capitals in Europe, flip hand…. This went on in series of 10 minutes each, constantly changing the mental tasks I was supposed to do. My ability to recall anything related to geography was pitiful. We laughed a lot and kept changing topics as I frequently hit the wall.
The good news is that someone is working on sorting out the mechanics of TREMOR! If there is one physical symptom of PD that I would like to get rid of so far, it’s tremor. Rick is looking for more volunteers with tremor-dominant PD for his research. Contact me if you would like to get in touch with him.
At NIH I had the 3 Tesla MRI on Wednesday followed by a 7 Tesla MRI on Thursday after the session with Rick described above. Neither MRI posed any difficulty until the research PI came to talk with me after I was finished. Apparently there was an issue of concern and he wanted me to have a Contrast MRI asap to determine if there was a problem or not. I could either be just fine at one end of the spectrum or be at risk for an imminent stroke at the other end. I felt fine but that indicated nothing. After many calls to Seattle it was agreed I would fly home Friday morning, have the CMRI Friday afternoon and hopefully get an answer by the middle of this week. I managed to not be anxious, just told myself that we needed more information and it was coming soon. Good news! After the Contrast MRI the radiologist contacted my doctor who called me right away to tell me nothing unusual presented itself on the MRI. Time to relax. I can’t say enough for the doctors who stayed late on the Friday afternoon of Memorial Day weekend to ensure that I had outcomes instead of anxiety.