William A. Parrette's Tremor Disorder -- Part 6
Late 1998 and Beyond
Well, the required time-limit had passed. It was time to pull out that list of neurologists that I had received at the Parkinson's screening and make an appointment. As I have mentioned, there was only one doctor on the list I was willing to see. So, I made the call and scheduled a visit.
I enjoyed my first visit with this doctor. Of all of the neurologists that I had seen, this was the first one that seemed interested in what I had to say. He listened carefully to what I was saying, he wrote up copious notes, and he asked me a lot about my medical history. So, I told him about my car accident back in 1975, the resulting head and leg injuries, which other neurologists I had seen and what they had said, and any neurological tests that I had taken. Of course he performed all of the usual movement and dexterity tests and, all-in-all, I just felt very good about the visit.
One of the surprises from this visit was that there was another test that the doctor wanted done on me. I had never heard of it before which made me wonder about the previous three neurologists that I had worked with. This doctor wanted something called a PET scan done on me. He said that, although it wouldn't prove whether I had Parkinson's or not, it could give some useful indications. He had his nurse try to make the arrangements for me and I left the office feeling like it was the dawn of a new day. There was just something that felt right about this medical relationship.
In addition, the doctor prescribed another medication. The medicine was called Eldepryl and I was told that it would not reduce any symptoms, but if it was Parkinson's, it would slow the progress of the disease. He also told me that typically, Parkinson's patients have low blood pressure -- mine was high; and typically, Parkinson's patients don't have leg tremors -- I do have them and they are much worse than my hand and arm tremors; and typically, Parkinson's patients are usually a little older. I had a lot of other symptoms that are typical with Parkinson's Disease, but these three issues had him thinking.
Well, I went back home and waited for the call about the scheduling of this PET scan the doctor had ordered. I waited a while, then I would call to inquire about it; I waited a little longer, and I called again. At first, the machine was broken and awaiting a part to fix it. Then, other scheduling issues held things up. But, in the end, it turns out that my insurance provider refused to pay for the test claiming that this particular procedure would not provide any definitive information about the condition it was testing for. So much for this health insurance that I had so patiently waited to receive.
Although I was more than a bit upset by this turn of events the doctor said that it wasn't all that unusual. So, I scheduled another appointment to talk with him again. This time, the doctor wanted to try an experiment. Since I had so many other "classic" symptoms, he wanted to try using Sinemet again. This time he wanted to try a stronger and more frequent therapy. So, I started taking Sinemet 25/250 at three tablets a day.
To this day, I still don't understand the results. Never before in all of my usage of the drug called Sinemet did I ever notice a useful change in my symptoms. But, now, it was almost like a miracle. My tremors quieted down significantly -- almost to where I didn't notice them. And, the slowness of movement disappeared. I was ecstatic! I was almost "as good as new." But, the doctor wasn't finished yet.
On my next visit, I related the positive results and mentioned what appeared to be a minor side-effect. I noticed that when I was talking, walking, or otherwise minimally active, I would have involuntary movements of sorts. These included a sort of "bobbing" of the head and a slow "tapping" of the leg and foot. He told me that this dyskinesia was a typical side-effect of being over medicated on the Sinemet. I also mentioned that -- although smaller -- I could still detect some tremors in my arms, hands, and legs.
The doctor seemed impressed with the progress. But, he wanted to make a slight change again. First, he put me back on the Sinemet CR 50/200 -- this time at four tablets a day. Then, he also prescribed Cogentin at three tablets a day. In using these new medications, I am able to get about the same amount of relief as on the previous drugs. So, right now my current drug regimen includes:
- Sinemet CR (Carbidopa/Levodopa controlled release), 50 mg./200 mg., four times a day.
- Cogentin (Benztropine), 0.5 mg., three times a day.
- Eldepryl (Selegiline), 5 mg., twice a day.
- Levoxyl (Levothyroxine), 0.5 mg., once a day.
- Feldene (Piroxicam), 20 mg., once a day as needed.
This last drug is not used for anything related to Parkinson's Disease. When I complained about some hip pain in the area where I was injured in the automobile accident to my G.P., she ordered an x-ray. In the analysis of the "film," it was determined that I had developed arthritis in the hip. So, the Feldene was prescribed to be used, as needed, to treat the pain that I was experiencing.
I am also in the process of considering the use of vitamins. At it's worst, I don't usually eat what might be called "healthy" meals and the I'm considering the vitamins to help offset that problem. Also, some vitamins -- such as E and C -- are thought to be helpful with Parkinson's Disease. However, I do have to be careful -- some vitamins (especially B6) have an adverse effect on the Sinemet I am taking. So, I am trying to figure out what type of vitamin therapy I might add to the previous regimen.
Well, I am no longer in denial. It seems obvious to me now that I am a PWP -- a person with Parkinson's. Although it originally seemed to me that this dis-ease progressed very rapidly and the symptoms caused me all kinds of problems -- both physically and mentally -- I now have a different view. In all of the reading, researching, and investigating, it appears that I am still in the early stages of the disease -- the stage where the drugs still have a positive effect. There are many more PWPs that are fighting this "thing" with much more effort and getting a lot less satisfaction. So, for the time being, I will count my blessings and live my life as fully as possible.
And, I will continue to hope for a cure. There are many different research efforts under way and some of them are described as having great promise. New drugs and new surgical procedures are under development all around the world. And, with new funding becoming available from government and other sources, it is only a matter of time before a breakthrough becomes a reality. I will continue living my life a day at a time, thankful that I have the small bit of control over this challenge that has cast a shadow over my existence. But, I will also keep one eye scanning the horizon watching for that new development that will make my life more normal again.
Beginnings of 1999
The beginnings of 1999 haven't brought anything that is too terribly new. The medications seem to be doing what they were intended to do. I have a few "off" times once in a while but I am at least able to perform my job and still consider myself productive.
After many, many years of being told by many, many people to try it, I finally enrolled in a Tai Chi class. The class is held at the White Willow School of Tai Chi and is connected with the Whatever Works Health and Wellness Center and Bookstore in Silverton, OH, a suburb of Cincinnati. My teacher is Vincent J. Lasorso, Jr. I am not exactly sure how this will help my Parkinson's symptoms. But, I am excited about the possibilities -- whatever they may be.
While looking through the bookstore after class one day, I started browsing through a book that described some of the alternative methods that some doctors are using to treat a variety of diseases. As I was browsing the section on Parkinson's Disease, I noticed that some doctors suggest the use of Passion Flower in combination with the typical Levodopa therapy. The book said that some doctors had noticed that this herb seemed to increase the effectiveness of Levodopa. So, I have been experimenting with both the capsule form and the liquid form of this herb. I think that I have noticed some positive results. But, I am well aware that I may also be experiencing a sort of placebo-effect. I will continue trying some things with Passion Flower and update this section if I notice anything useful.
Beginnings of 2000
In February of 2000, my wife and I changed our G.P. The new doctor seemed more than a little bit interested in my P.D., said he knew some neurologists, and talked about learning more about the disease. He also replaced the Piroxicam with Naproxen in 375 mg. tablets at two per day to deal with my arthritic and other leg pains. It seemed to be a better choice as it relieved the pain better and for longer periods of time (at first). But, the effect has diminished over time.
I have also been seeing a chiropractor to help deal with the back pain that results from the poor posture and stance that results from the different pains I experience in my leg. I do notice benefits from the adjustments and have been trying to schedule visits when my job travel permits.
At the same time, I have been having sessions with a Theraputic Touch practitioner. Where the chiropractor provides some noticible physical relief, the TT practitioner has provided some noticible mental and emotional relief. As before, I try to schedule visits as my job permits.
Well, the pain in my leg continued to get worse. Both my neurologist and my G.P. suggested I see an orthopedic specialist. In the process, two doctors prescribed a "newer" arthritic pain control medicine called Celebrex. Unfortunately, I had a very big allergic reaction to this medication. I experienced swelling all over my body -- primarily in my lower legs and arms (which continues to this day) as well as a rash at many locations on my body. After reading the drug descriptions on all of my medications more carefully, I compiled a list of about a dozen side effects that had suddenly manifested after taking Celebrex and it turned out that many of them were of the "call your doctor immediately" variety. Most all of the problems (except swelling) have gone away for the time being.
And, as a result of seeing two different orthopedic specialists, I determined that I needed a total hip replacement. I underwent the surgery on April 4th, 2001. I still experience a small amount of pain. But, the difference between the preoperative and postoperative levels is like "comparing night and day." At times, the difference is so great, I almost forget that I have PD.
And, for reasons unknown to me, my neurologist told me to see a local neurosurgeon. His said that I should talk about the future with me and PD and the possibilities of brain surgery to help control symptoms better. I didn't think my symptoms were all that bad -- I felt that the medications were doing a fair job at control. But being more than a little curious, I made the appointment. As it turns out, the surgeon he told me to see was associated with the University of Cincinnati College of Medicine where they have a Neurology Division, a Neurosurgery Division, and a Clinical Trials Division. The Medical Center has one of the nation's most well-respected centers for Parkinson's Disease surgery. This center is run through the Mayfield Clinic. The doctor I saw there was just as confused as I was about why my neurologist suggested I see him. However, he did agree to do a "Parkinson's evaluation" with me and to discuss my current position and my future alternatives. But, after my first visit, for reasons unknown to me, they closed down the Parkinson's Evaluation system that I had signed up for -- I was looking forward to seeing a larger PD organization at work (secretly hoping that the tests would bring a different diagnosis). So, all is "back to normal" in my PD life.
My current neurologist has added another medication to my regimen: Ropinirole Hydrochloride (Requip). So, I am currently using the following medications:
- Levoxyl (Levothyroxine), 0.5 mg., once a day (for Thyroid condition).
- Sinemet CR (Carbidopa/Levodopa controlled release), 50 mg./200 mg., four times a day.
- Amantadine, 100 mg, four times a day.
- Requip (Ropinirole Hydrochloride), 1 mg. 3 tablets, three times a day.
- Cogentin (Benztropine), 0.5 mg., three times a day.
- Eldepryl (Selegiline), 5 mg., twice a day.
- Vicodin (Hydrocodone/APAP) 5/500, as needed (for orthopaedic pain).
- Keflex (Cephalexin), 500 mg, 2 capsules (before any dental work because of the hip replacement).
- Viagra , 50 mg., 1 tablet as needed (undoubtedly needed as a result of a side effects of some combination of the other drugs listed above).
2001 was also the year for my 30th anniversary high school reunion. I prepared myself by making sure that I was current and timely on all of my medications -- sure that I could hide my PD symptoms enough to enjoy the festivities. Things went well and many of my old friends stopped by my table to talk. I was feeling pretty good -- sure that I had succeeded in my disguise until ... One last person stopped by at the end of the night. They said "hi" and mentioned that they had been watching me from across the room a little bit. And, then, the question: "Parkinson's Disease?" Needless to say, my bubble burst, and I felt a need (which I resisted) to run away and hide. :-/
2002 - 2004
In July of 2002, my worst PD nightmare was brought to life: I was laid off from my full-time job. I had always enjoyed my career as a trainer and I was working for what I thought was the best training company in the world. But, I had seen the "writing on the wall." As the old industry saying goes: When the economy goes bad, and a company's revenues go down, the first thing they toss is training. And, I had noticed my company's class schedule had started to become less populated and sparse over the previous several months. So, even though I was one of their most popular instructors, I was one of their highest paid instructors as well, and seeing as how I was living in Cincinnati and they were located in Denver it made sense from several perspectives that my job be eliminated.
I spent the next six months on unemployment sending out dozens of resumes every week. And, as I assumed, it seemed nobody wanted to hire an employee with Parkinson's Disease. So, I did something I had hoped I would never have to do: I applied for Social Security Disability Benefits. My initial claim was denied so most of 2003 was spent appealing the decision and going to a large number of Social Security appointed doctors who examined me to see if I really was disabled by Parkinson's Disease. I was finally approved in late 2003 and although the benefit amount was good, all of the money from my ex-employer's severance package, unemployment compensation, and life savings had been used up. There wasn't enough in Disability benefits to live on.
So, I did the second thing I had hoped I would never have to do: I filed for Chapter 7 Bankrptcy protection in December of 2003. It took the better part of five months and a huge dispute with the mortgage company -- almost losing the house -- but got the discharge on April 20, 2004. My mother died earlier the same month.
2005 - 2010
Visits to my neurologist, obviously, were few and far between in 2002, 2003, and 2004. But, as life started settling down, I got back on schedule with two or three visits per year. And just about every time I saw him, he would almost always tell me that I was a "perfect candidate" for Deep Brain Stimulation surgery. It seemed that UC Hospital and the Mayfield Clinic (mentioned previously) were back in the "Parkinson's Disease business." It took a while for me to get used to the idea of having holes drilled in my skull (a long while, a multi-year while!) but my doctor eventually made an appointment for me with Dr. George T. Mandybur of the Mayfield Clinic in late 2007.
As it happened, at this time the Mayfield Clinic and the Universiy Hospital were involved with a clincal trial with a new device used in Deep Brain Stimulation developed by a company called ANS in Plano Texas. The device is called Libra and it is different from the standard device (from a company called MedTronic) in that its "stimulation" is current-based as opposed to voltage-based. Dr, Mandybur asked me if I would be interested in participating in the clinical trial. I said "yes," but didn't sign the papers right away.
Instead, I spent the next year being examined by one of the U.C. Physicians, Dr. Andrew P. Duker, in preparation for the anticipated surgery. I finally committed and signed the paperwork in January, 2009. The surgery was scheduled for April 6, 2009.
I arrived at the hospital early and the "halo" was attached to my head -- screwed down tight, real tight. One of the most important things that has to happen before the surgery can begin is that the head must be completley immobilized and not allowed to move at all. The halo gets clamped down in the operating room to keep the head from moving. After some "pictures," the anethesiologist arrived and I was put to "sleep."
I don't know if I can convey the exact feeling one has when waking up in an operating room with a hole being drilled in your skull. "Unnerving" doesn't seem to be descriptive enough but it is all I can think of at the moment. They woke me up for a reason -- I had to be an active participant during the surgery. While they were positioning the stimulator in my brain and setting the initial current levels, they had me go through several standard Parkinson's movement tests with my hands and fingers and asked me how I felt after each one. Dr. Duker administered the movement tests while Dr. Mandybur positioned the stimulator. It really seemed like such a short time and I was asleep again.
But, I am glad I was asleep for the final step of the surgery: connecting the stimulator to its power source. Wires were connected to the stimulator -- one in each side of my skull -- and then snaked down between the skin and the skull, behind the ears, down the neck and into my chest. In my upper chest, two incisions were made -- one on each side -- and batteries were inserted which were then connected to the stimulator with the wires. I'm told that the lifetime of the batteries is about three years.
One of the conundrums of Parkinson's Disease is that the medications used to control the symptoms themselves have other symptoms -- or side effects. This is especially true later in the disease's progression when higher levels of medications are needed to control the original Parkinson's symptoms. These dyskinesias (as they are called) can -- at times -- be worse than the original symptoms themselves. My worse dyskinesia I called my "bobble-head" dyskinesia. The name says it all. There are a few other less bothersome dyskinesias I had but after the surgery, the "bobble-head" was gone!
The last time I saw Dr. Mandybur was when I had the staples removed from my head (:-/). And, he asked me the question: "If you had it to do all over, would you go through the surgery again?" I answered without hesitation "Yes!" Not only was my "bobble-head" gone, but I truly believe that several of my Parkinson's Symptoms had been diminished too.
Would I recommend the surgery to others? Again, an unqalified "yes!"
I will update this page as new events and new information unfold.
Please note: I am not looking for sympathy! I am writing this as my own form of personal, psychological therapy -- trying to accomplish a form of mental healing. I hope this also serves to help people I meet -- teaching classes, attending concerts, or in other casual settings -- understand that, although I may look like it, I am not retarded, I am not slow-minded, I am not drunk, or anything else. I have a fully-functioning mind that happens to be trapped in a deteriorating physical body. All I ask is a little compassion and understanding if your path and mine cross someday in the future.
Thanks for stopping by, thanks for reading. And, as I am often wont to say in closing, may you always grok in fullness.