When I first spoke with world-renown Neurologist, Dr. Plotkin in Tyler, Texas's Neurology Center, I told him, "I'm never taking Levodopa." I was convinced it would be years in the future--not less than 10, and probably 20, before that even came up as an issue. But I knew, oh, how I knew, as a nurse that Levodopa was a self-limiting gift that kept on giving. The more you needed it and the more you took, the more side effects, monstrous side effects you would have. He explained that he had some serious doubts about the bad reputation Levodopa had earned over the years, because he had a number of patients who had taken it as long as 20 years without any real problem. "It's the disease process," he said. "The disease marches on, whatever you take, and for some people it moves faster than for others. Regardless of when you begin the Levodopa, symptoms of progression are going to occur." I could see immediately what he was inferring. It would be easy to blame the meds for the disease symptoms since you really can't be without the meds. And they do not actually hasten the symptoms, which, for me, now include dystonia.
It was late last year when I sat across from my own neurologist, Dr Peckham, who had trained at Dr. Plotkin's center. When I first told her my foot had been turning inward at night, she jumped out of her chair, and raced toward me, saying, "When did this happen?" I thought she was really reacting strongly, and I felt silly for mentioning it. I said, "It goes away when I get up and walk." It didn't seem like a big deal. I even thought, maybe I'm imagining this symptom because I've read about it befoe. But within months it was a very big deal. By the next visit my foot really was turning, my ankle thickening into some contorted shape, swollen and red. This very nice doctor had been patiently trying to let me negotiate what I would do with meds so I could have some quality of life. She now firmly insisted we had to treat the Parkinson's to get it under control and prevent further damage. I wondered if I had really tried the Amantadine or let my imagination run away with me and just THOUGHT it was causing the tachycardia and PVC's I had experienced. We agreed I'd give it the full try, 3 times daily.
I asked for a referral to physical therapy, and was at first pleased when an anti-gravity chamber permitted me to not only walk more easily, but actually to jog. It was, of course, too good to be true. You can't spend your life in an anti-gravity chamber, and the physical therapist, geared toward high school athletics, had some idea that exercising was going to "fix" this problem, urging me to push a little harder until I was back where I started. Even in the chamber I was experiencing pain after a few minutes of walking.
Back on Amantadine, I was having the rapid heart beat again. I weaned off. For me it was proof positive and dangerous. My MD would not take me off the beta blocker he had prescribed to counteract its' effects even though I ass not taking it any longer.
Next I visited with a podiatrist who gave me a walking boot to immobilize the affected joints, and suggested we have a brace made, cast from my own leg, to slip into my shoe & support the affected leg.The walking boot made walking nearly impossible. After a week I was back to Dr. Peckham, who told me that in her experience, none of these things had worked for her patients. She suggested I was a candidate for deep brain stimulation or for Botox injections to the affected muscle groups.
She wanted to try Levodopa. The Never-Never Drug. I shuddered. I blinked back tears. "I said I would never take Levodopa," I offered in futility. I knew we were out of drugs. After stopping the Amantadine because of the arrhythmia that came while on it and went away when off of it, I had insanely thought I would just shake, and deal with it. After all, I was taking Azilect. At least that was something I could take. But the foot-drop occurred within a short time. I was essentially an un-treated Parkinson's patient. It was as though I had never taken anything, because, in truth, nothing had ever worked for me.
I agreed to the trial on CarboLevodopa. I was tired of the pain in my foot and ankle, and now there was a burning sore area on my left foot, just beneath the ankle and wrapping around to the sole of my foot. Always there. Never going away.
I eagerly worked my way through the ramp-up. I had heard from other Parkinson's patients that while it worked, the Levodopa REALLY worked, and that I would be happy to have the tremor gone. I knew there was a "wearing off" period, but was unprepared for what that meant. I thought it was something that happened, again, years and years down the pike. It happens within hours of the metabolism of the drug. You just start shaking again. You are so used to having it gone, so grateful after years of shaking all day and every day, and there it is, back within hours, so you don't miss a dose. Oh, how you worship the Levodopa! I understand why they called it a Wonder Drug.
I spent nearly a month at home waiting for the ramp up to be complete, and keeping off the foot that had become so painful that the idea of walking through even a grocery store was distasteful. I no longer cared about cooking because that meant standing on my feet for an hour or so. It wasn't worth it. The question, "What's for dinner?" brought out the worst in me. One day, I barked, "NOTHING! I am not cooking anymore and we're no longer eating!" Poor Rachael. She always has a mild answer. I felt terrible, and we found something to fix.
The area above my ankle became less red and swollen, but the extra thick inner aspect of the right ankle stood where it was. With increased use, it hurt more. So did the left. I began to use the riding cart in the grocery store. I felt embarrassed, since I knew I looked perfectly healthy to anyone else, and I hoped some little old lady or man who REALLY needed it didn't have to push a grocery cart because I was so wimpy about walking.
It has been about 4 weeks, now, on the CarboLevodoopa, and I now have an area of my back that has begun to hurt and burn. I suspect it is more of the dystonia. I'm working with a personal trainer, trying to exercise, carefully, for core strength and to counteract some of the effects of Parkinson's. I was thinking this was somehow going to fix itself. I still want to avoid the Botox or deep brain stimulation if possible, just a little longer, but now my questions are all about what will happen if the dystonia goes on and on, and what can we do to prevent it.
I see Dr. Peckham next week.
