Like interest, Parkinson's does not slumber or sleep, and never takes a vacation.

As a Registered Nurse it was my lot to see a lot of little vignettes in which the lives of my patients sometimes appeared and reappeared on the stage of my work.  One particular instance in which a young man in his early 20's who had Type I (Juvenile) Diabetes comes to mind.


For the rational, dispassionate observer, that one who had Type I Diabetes needed careful planing of every day that included diet, exercise, and insulin in order to avoid complications and decreased quality  of life would be obvious.  But for the individual who had spent most of his youth dealing with the disease, forced on him through no deed or will of his own, and having what most of us expect, a "normal" childhood, constantly interrupted with care-taking activities had become more than his psyche would tolerate.  So he quit. He just quit. 


Of course it didn't take long for him to land in the hospital. I saw him only twice.  Once, when he came in with an unstable blood sugar that took days to bring down, along with the usual counseling and education attempts, all falling on deaf ears.  And later, just a year later, when he was admitted to the ICU where a cardiac condition had emerged as a result of the abuse his body had experienced d;uring his frequent forrays off his diet.


He left a singular impression on me, as I wondered what would  happen to him in time. Now as I look at all of us, I wonder what is unnecessary for us to experience if we become educated, if we exercise, watch our diets, and fight the oppressor which seeks to rob us of our "normalcy". 


Recent circumstances led me through a path of retreat. Some events relative to the day-to-day management of resources and needs were especially taxing, and largely uncontrollable. It seemed resources were far beneath the needs we had. That was stressful. As my spouse and I, now veterans at this type to things, told ourselves, "This will pass."  And it did, leaving a shortfall that will extend into the coming year, but will inevitably be filled and rectified, since that is what we do. 


Two of my best girlfriends found an excuse to get me out of town,  paying for my plane ticket and my stay at a beautiful hotel in a pearl of a city, Milwaukee, as we celebrated an accomplishment we had achieved as a group. It was a lovely week, and one of the girls kept me in physical shape, ensuring I made countless trips up and down the dramatic staircase of the hotel. I felt good while away.


But when I returned to the routine at home it was clear to me that my family, each of whom I love, were a bit taxing, starting with the grumpy man I have tried to negotiate sleep with. He has spent years telling me who cranked up their noisy truck, car, or motorcycle at what hour of the morning. Followed by, after I began the cycle that lead to my diagnosis with PD, a litany of how many times I had awakened him, however briefly, with talking, blowing bubbles, as he calls my frequent breathing noises, or occasional outright snoring. This is the same man who I  dragged to the allergist to get the injections needed in order for  him to live a normal life by day, and to be able to go to bed without making thunderous snoring noises all night long. 


So his own reasons for sleep disturbance settled, he focused on mine, and the past year I have slept nearly everywhere in the house in an attempt to get away from the feeling that I might keep him awake. After the girlfriend trip in which I quizzed my honest and truthful room mate and she reported low and brief outbursts of sleep-talking, I realized that I was so stressed about my spouse's complaints that it had become nearly impossible for me to sleep at all. I reclaimed my place in the comfortable temperapedic bed next to him, told him that one of us should move to the couch if the other kept them up with snoring or talking, and saw my family doctor to explore his next suggestion about sleep.


My Neurologist had declared Klonipin off limits, which just seemed strange. Her nurse sort of hissed at me that it was a controlled substance.  Which is an untruth. You do not get a triplicate form when you get a script for Klonipin, and it is commonly used for Parkinson's patients. Twice I asked my Neurologist directly what the problem was with Klonipin and she replied that it could be habit forming. 


I wondered to myself whether or not not-sleeping was also habit forming. She offered NO alternative.  About six weeks went by without more that a single night here or there in which I got what I considered a reasonable night of sleep.  


So, of course, my Parkinson's symptoms have worsened significantly. the Sinimet no longer works as well as it did.  Especially late in the day I have tremors again in my right hand, which also feels crampy.  I have restless leg syndrome now.  My voice is low and cracking.  My eyes are so dry I need to use gel at night or face eyes so dry that I need to massage them to spread tears before I open then. They won't open otherwise. (My Neurologist shrugged and said to use a moisturizing drops instead or "artificial tears" when I asked what to do about the horribly dry eyes. Do I need to start looking? Maybe for now the occasional drive is worth it to see my original Neurologist.)


I developed a sty after the over-the-counter moisturizing drops didn't help. As no one holds clinic on the weekend I will get a bill for the ER and now to an Ophthalmologist as it became swollen, red, and itchy. Ten days later it was somewhat better on the antibiotic it was treated with, but not gone. So to the specialist who offered gel at night, a better moisturizing drop for the day, and punctal plugs if not improved. I am wondering, does my Neurologist not take a wholeistic approach as my Internist does? 


I'm trying to keep a positive attitude when in truth, I'm a trifle depressed. Old situations have come to haunt me. The whole past month has been a downward spiral of night after night with sleep disturbance and meds not working well. Oddly my family physician, and Internist, is more interested in seeing that I get sleep than my Neurologist, who has a disconnect in seeing the effect of chronic sleep disorder and progression of the disease. 


For that reason we are traveling this evening to a Young Onset group meeting at which an authority will speak on sleep disturbance in PD. 

My spouse is a cancer survivor with 14 years Stage IV Melanoma under his belt.  He wanted to live very badly. He was a great fighter. He was motivated, and instinctively knew what to do. We survived the death  of a beautiful 16 year old daughter together, a lot of the petty things I held against  him, as above, no longer part of a score card, but just a simple statement of this-is-how-I-was and this-is-how-he-was. 

I hope we are turning a corner, and can learn how to support one another through the constant changes that lay before us. Hope is a good word. 

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