PatientsLikeMe ™

My Abbreviated Parkinson’s Story
10 November 1998 - 19 April 2010

It was oblivious to my very first symptom in 1998. I will always remember this exact moment. I saw my left pinky twitch once. Little did I know I was heading along a strange and unknown path for the rest of my life?

I sought out the best neurological doctor I could find. I live in Phoenix where Barrows and the Mohammed Ali Parkinson’s Institute reside. It’s the year, 2000 and Doctor Stacy at Barrow’s diagnoses me with dystonia and essential tremor. Two years later I found a more reasonable explanation at the Mayo clinic in Scottsdale. Doctor Adler looked at me for about 5 minutes and became annoyed. “Why didn’t they tell you that you have Parkinson’s disease?”

My job had changed dramatically and the stress level increased. I could barely type without shaking. The stress was everywhere at this place. The shaking worsened. HR told me to go on short-term disability and I never returned.

Since that day in September 2002, I am still dependent upon the state and my former employer for medical and financial care. It takes me 45 minutes to get showered, shaved, dressed and downstairs in the morning. By then, I have to wait 45 minutes to eat breakfast and the drugs start to kick in ("on"). When we go out, if I do not time my medications perfectly, I have to sit 30-45 minutes wherever I am on again. When the effects of the medication wear "off", I shook uncontrollably, had difficulty swallowing, standing, driving, talking, eating, and have trouble with virtually every motor function. I have bouts of mild to moderate depression, lack of mental focus and memory, periodically experience obsessive-compulsive behavior and have major sleep disorders. I fall often and injured my left knee, wrists, right shoulder, and neck and back most of which are still bothering me. I take 22 pills a day, about 2 every 2 hours and have to avoid taking them with food with protein since protein negates the effects of medication. I can no longer function for any period longer than an hour reliably; the medication wears off with little warning. This limits every aspect of my normal activities.

We finally were ready for the last and most invasive solution and decided to have DBS surgery. Deep Brain Stimulation is brain surgery that places two wires each with 4 emitters into the sub thalamus and connecting each to its own transmitter implanted just under the skin. We start the process of qualifying for DBS surgery 8 by taking a mental competency test in January, 2008. I passed. We now have a surgery date; April 17.

I was feeling strong and confident about this whole procedure from this first surgery. They put my skull back on nicely thereby clearing my doctor of any malpractice suits. My time was in the ICU was brief (36 hours) and relatively painless. They sent me home with a forehead full of wires and staples. Three more days of hospital food and the constant attention, I was ready to go home and vowed to never return.

It’s June 23, and he tells me that I need to have those internal stitches “revisited”. In June, in the same hospital, same circumstances, they open me back up took any possible infection cultures and sewed me back up. He prescribed a three-week regimen of heavy-duty antibiotics and off I went.

I am ready to begin the DBS programming. On the very first visit my neurologist switched on my left side transmitter and my tremors on my right hand stopped, just stopped. This was amazing. With the same results on the other side, I am cured. All tremors and dyskenias are eliminated.

My neurologist at the Muhammad Ali Institute had an MRI done to display the exact position of the leads. The results: the leads were placed at an incorrect angle through the sub-thalamus. As the voltage is increased to reduce the tremor, dyskinesia, difficulty speaking, eating, swallowing, typing… I lose more control of my legs. I can still walk but with a cane and only for about 40 feet at a time

I went to meet with my new neurologist and surgeon Dr. Pootrakul out in Sun City on January 25th. He asked so many questions and within 15 minutes concluded the previous surgeon made 4 critical mistakes. 1) The leads were placed at the wrong angle 2) too close together 3) in too deep 4) they should never close directly over the implanted hardware Next steps: CT and MRI’s.

The neurologist switched off my DBS system today. Wow. All the things I have been able to do, I now cannot. I am back to my Parkinson's symptoms 2 years ago but it is all worth it. Besides this week I can turn it back on and admittedly I turned it on every night so I could sleep. Being a shut-in for 2-3 months is not my first choice but I can handle it.

It’s the 10 of March, 2010. The surgery went perfectly and was virtually painless thanks to an amazing surgeon. We went in at 6:00am and left at 2:30 that same day. I now have a newly shaped head. Now that all the DBS transmitters, wires, brain leads are removed, all Parkinson’s symptoms are back with a vengeance. When the medication is working, I have no shaking and can even walk. I shake violently causing cramped muscles and spasms.

My doctor agreed with me to use a muscle relaxant. Did nothing. He then had me take higher doses later in the day. This is working a little and I can now see the tunnel. I have to be careful not to O.D. on this stuff. Too much buildup of sinemet causes a nasty reaction called dykenesia. This is the ultimate knee-jerk reaction where any limb randomly fires out in any direction. It looks hilarious if you stay out of the way. Sleeping is still difficult but we will get something stronger for that. Morphine? I am not feeling 100% better, yet.

While I was shaking, the good doctor took out the stitches with the skill of a, well, surgeon. We have a target date of May 10th to review how well I have healed. A week after that, an MRI, a week or two after that, the implant surgery, another week, the transmitter implant surgery and finally turning on the power in two weeks. That puts relief from these symptoms to June. We need to revisit this.

Millions of Parkinson’s patients suffer through these symptoms day to day for the rest of their lives. Cases are presented online from everywhere discussing options and methods for treatment. My case is different. Having all the PD symptoms return overnight has thrown my body into a tailspin
The last three weeks have been extremely difficult since the medications have yet to stabilize. Once they wore off, the symptoms were untreatable and sleep was spotty.

Yesterday, my medicine leveled off! I can sleep consistently and recover from “off” time quickly which opens up most opportunities; church, going out, driving short distances (safely for me) and some exercise. There are 5 weeks left in my current holding pattern after which the doctor will check me out, I’ll get the MRI and have the first surgery all in mid-May.