Parkinson’s Disease (a patchwork of my journaling from different times and dates)
I’m not sure, it could be six years ago, I was living alone by myself with two dogs in Brooklyn, when I noticed that my arms were not swinging when I walked. How strange. As other “things” occurred I had no landscape on which to identify them as symptoms. My posture deteriorated, my pace slowed, my stride shortened and stiffened but after all I was in my mid sixties. No one else commented so it probably was an age thing. Often I felt as tho’ my insides were tremoring. But there was little visual to validate this and again age might be responsible. My voice lost volume and quality. Habitually very animated, more and more my face lacked expression. My family became concerned particularly when I, who loved to dance, attended my grandson’s Bar Mitzvah and could not dance. Not that I didn’t want to, simply my feet did not seem to get the right messages from my brain.
At the time I was in treatment for Fibromyalgia. Because it is a disease that involves chronic pain and fatigue I had assumed that the Fibromyalgia was responsible for the new symptoms but was encouraged to see a neurologist for an evaluation. The waiting room in the office of the MD I consulted was full, which seemed encouraging. The actual wait was less so. The tests he put me through struck me as highly unscientific: spread your arms wide, now touch your nose first with one hand, then the other, squeeze the doctor’s fingers, walk a straight line as quickly as you can, resist falling when given a little shove. I have since come to understand that these “unscientific” tests provide the doctor with information not attainable any other way.
Seated in his office he told me that I had Parkinsonianism. With a casual attitude he handed me a prescription, told me to make appointments for various tests and to make an appointment for a follow-up with him. I cannot recall leaving his office.
For weeks I rolled the words around in my head, PD,
Parkinson’s Disease, chronic, debilitating. None of it felt like me. I tried doing some searching on the web, could not absorb the information. Then Margo came to mind. She was a long time friend who was diagnosed with PD many years ago. Getting together with her had become more and more difficult. It meant that I had to go to her, which I had less and less energy to do. She lived almost as far from my home as possible and still be in NY.
Describing my experience is difficult. There’s chronic pain, a different pain from that produced by Fibromyalgia. I take a lot of narcotics in order to be able to deal with my everyday activities. My fatigue can be so overwhelming that I need to lie down in order not to fall down. The PD tremors and unsteadiness and muscle spasms arenot very observable by others but very disruptive to my functioning. I also need arrythmia medications, reflux medications and a slew of supplements.
I experienced severe side effects, from the medications, so I began the search for the correct drugs, dosages. dietary choices,
At that point I moved to Santa Fe and went through a similar experience with two neurologists, becoming more symptomatic and developing severe GI distress.
My son, Marc, suggested that I seek a consult at Cedars Sinai MC in LA where I found a neurologist to work with. At about the same time I found a wonderful, holistic MD in Santa Fe who specializes in pain management.
Living with several chronic diagnoses is demanding. Much of my time and energy are absorbed by experiencing symptoms, monitoring medications, visiting providers, while trying to keep a semblance of order in my life. Above all is the challenge of acceptance; this is my life, not what it was but what it is now. I morn my loss of dependability, of the ability to be helpful, since I might need to cancel at a moments notice.
Dealing with medications, side effects of medications, physical symptoms, and the like allowed me to avoid the emotional, feeling aspects of the changes in my life, but only for so long.
Loneliness being alone solitude
I hear concern in my daughter Robin’s voice. “Are you getting out?” she asks. “Not just to the market, but socially.” Most of my life I have been actively involved in groups: my family, my work, the Brooklyn Women’s Chorus, the Food Coop, vacationing with friends. Now I spend most of my day alone, except for Olivia. She is a wonderful companion, a warm, cuddly miniature Schnauzer. Her demands are simple, feed me, walk me, play with me and let me curl up in the middle of the bed, right up against your leg. Those requests force me to evaluate my status. For example Can I take a walk? Exercise is important for my many diagnoses. Each of my physicians makes a point of the need to remain active. Am I feeling well enough to go for a walk or do we just go out the back door so so Olivia can respond to nature’s demands.
Being alone suits me now. I have always enjoyed people, their energy, their stories, but recently being amidst a lot of people, with many conversations going at once feels like a physical assault. Sometimes I need to flee the restaurant.
There is a difference between loneliness and solitude. These days I need a lot of alone time, which includes much sleep and many MD visits. Loneliness creeps over me when I miss an intimate companion. That person who accepts me warts and all, who can comfort and understands me even when I have not spoken out-loud. I had such a relationship for 22 years. When I needed to come to grips with life with PD, that person, my partner died.
At the same time I had to have five surgeries, I lost my job and I was taking care of my mother who was living in a senior community and falling into Alzheimers dementia. There was no time for mourning.
There are several PD organizations on line, some with online seminars. Since it required no travel I tried to attend. I tried to get involved. Although I find writing on a keyboard better than longhand I am not comfortable with remote conferencing. When in the past I have joined a conference online, I find myself in the kitchen making a cup of tea, or transferring a load of wash from the washer to the dryer, nowhere near my computer. This site is the first that I feel engaged in and enjoy the personalities I meet. When I had no intrnet for several days I missed the contact.
PD impacts everyone differently, or so I have been told when I try to find some pattern or predictability in what I am experiencing. I am riding my own private ice floe on un-charted waters. Periodically someone, perhaps a doctor, floats next to me and provides some observation, advice or medication. Over the past year we (2 Mds, one PT and I) seem to have designed a course, which I find tolerable. Not asymptomatic or pain free, but functional.
On “good days” denial runs strong. Do I really have PD? Not a helpful state because I then do more than is reasonable and that results in system collapse J So, although there are many thoughts nudging each other in my brain, I need to stop, walk away from my desk and rest.
From the center of a “not good” day… I have been trying to figure out how to put the way I feel into words that make sense. “I feel lousy” does not give any clues. I have tried.
“It’s like a bad case of flu after working out too hard the day before.” Exhausted, achy, cold (in spite of layers of clothing and the heat on), fuzzy headed, anxious, feverish (normal temp), wobbly, with burning eyes, all at the same time. As it attacks so it leaves, and, hours later I feel enough better to climb out of my armchair and see how much of the day remains and what I can do.
Last month my symptoms escalated. After many weeks of “doing OK”, getting out, participating in life I crashed. Thanks to Dr. S we discovered that I had a urinary tract infection and had probably acquired the “Flu” that has been attacking indiscriminately. So, I learned, chronic diseases do not come with a free pass. In addition recovery takes longer. Cursing, screaming, waving the white flag, does not help. I need to lie down. Your turn!