Ups and Downs
I’ve been wanting to share my story for some time, but never actually sat down to give it a go. It’s 2:05 a,m. and my inability to rejoin the sleeping world is just another part of life with PD. I’m not sure if it’s a side effect of the meds or the PD itself, but I frequently wake up between 2 and 3 a.m.and stay awake until 5-6. At any rate, now is a good time to tell my story.
Almost 10 years ago, (I’m 67 now) I started to notice a silly quirk showing up when, for example, my wife and I attended parties. I would go to get us a couple of drinks. Returning to the table was challenging. If anyone came near me, while carrying the pair of drinks, my arms would automatically reflex and would toss both of the drinks. Or, if I made it to the table and set the drinks down, with a sigh of relief, I found that picking up my drink again was a party in itself. Reaching for my drink, I would sometimes pick it up without incident, but frequently I would reach for the drink and my whole body would tense up. I would get the drink, but my arm and hand would invariably twitch in a tossing motion, thus spilling the drink. Making a conscious effort not to spill the drinks exacerbated the problem and I would surely spill. Talking to my GP, he thought it sounded odd, but being an annoyance rather than an everyday occurrence, we shelved the issue for a later review.
About ten years, or so, ago I started noticing a tremor...not all of the time, but fairly frequently, in my left arm and hand (non-dominant side). Also, I was beginning to develop a slight stutter in my speech, I was having difficulty concentrating and, for the first time ever in my life, I was showing up late for meetings or I was missing them altogether. For awhile, I chalked it up to age, stress or just too many changes at work. The tremors became more frequent, more intense and more visible. I began to hold down my left arm by steadying it with my right hand. But, my wife and I agreed, something was going on that needed to be addressed. My G.P. had some thoughts and ideas, but he wanted to get input from a neurologist. So, I called the biggest neurological group, I explained to the receptionist what was going on and she gave me a very short lead time appointment to see one of their neurologists. His specialty was with stroke patients, but he could certainly take me. He ran a battery of exams to rule out stroke, but found a couple of spots...tiny spots, that he thought might be lacunar strokes. In the mean time, the symptoms were getting worse. So, I told the stroke doctor that I wanted to see a movement specialist. He agreed.
A couple of weeks later, I was able to see the specialist.. She went through her examination and said, ‘It’s not Parkinson’s.” I was shocked. I hadn’t considered Parkinson’s, or any other named disease at that point, because I just didn’t know. She said, “The tremors are all wrong. The amplitude is wrong. There is very little “pill-rolling” going on. I don’t know what this is....maybe it’s neurotic delusions, but not Parkinson’s.” I was, at that point, very annoyed with her, so I responded, “I never suggested it was Parkinson’s. I would be very happy if it were not Parkinson’s. But I’ll tell you this, it’s not delusional on my part. I’m not making this up because I want attention. If you can’t help me, I’ll find someone who will!” She said, “Ok, Ok...I’m giving you a supply of carbidopa/levodopa to see what that does. Carbidopa/levodopa is the gold standard med used to treat Parkinson’s. We’ll see if it helps. Try it for a couple of weeks and come back.”
So, I started the c/l and found that I was getting amazing results. The tremors were nearly gone, the stutter was nearly gone. In the mean time, the original neuro had scheduled me for a DAT scan and although there is no definitive test for Pd outside of an autopsy, the doctor reading the scan had provided a written report qualifying that testing for PD was impossible, the scan that he ran showed several indicative factors that are common with many others who have been diagnosed with the disease, he felt comfortable reporting that my scan provided sufficient abnormalities that were commonly indicative of idiopathic PD. When the stroke doctor saw the results, he called me saying, “I’m sorry, Mr, Binder, but I believe you have Parkinson’s disease. We should start treatment immediately.” I told him about the movement specialist and that she was doing a test trial with c/l with me, he deferred to her specialty.
I thought we were getting somewhere. The c/l was working, I was feeling sharper than I had in a long time and the scan seemed to show we were going in the right direction. The movement specialist came in and before I could say a word, she pounced on me saying, “There are no tests for PD. Only observation. Wrong amplitude. Very little pill-rolling...I don’t think it’s PD.” I replied that that test was the test. I hadn’t ordered it nor had I influenced to doctor who read it. Further, I reported that the c/l was working. She then told me that she was taking me off the c/l because even though it was working, c/l is the best med for PD and that I needed to hold off on it until I really needed it. She started me out on Mirapex ER tabs and told me that from now on I would be seen by her PA and would only see her directly if my condition deteriorated. Well, the symptoms returned with a vengeance. I saw the PA, she increased the Mirapex. When I saw my GP, he couldn’t believe the tremors I was experiencing. So, back to the PA and another increase in the Mirapex and, after that, yet one more.
Let me tell you about Mirapex ER. It may have its applications, but the warning label actually minimizes the potential side effects. Usually the side effect warning label is a legal requirement added by the drug companies to protect their behinds when problems arise. The Mirapex Er that was scripted for me by the movement doctor’s PA literally nearly killed me. It turned me from an active, responsible intelligent person into a narcoleptic. I’ve seen comedy routines based on narcolepsy that were very funny. There was nothing funny with what was happening to me. I was falling asleep in the middle of conversations, I closed the blinds and locked my office door so I could sleep, I fell asleep at the theater (more than once), but the most terrifying was falling asleep while driving. My wife saved me a couple of times and I got lucky a few other times.
It was then I decided to get the real help I needed. I went to the Cleveland Clinic. (To be continued)
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?