The reconstitution of Parkinson’s Disease (PD) symptoms after Deep Brain Stimulation (DBS) surgery is slow, but the path well-worn from previous travel. My single prescription medication, Rytary, is a Levodopa-based drug like the Sinemet that had grown clumsy in 2014 due to the large doses required. Levodopa is essentially artificial Dopamine, the neurotransmitter that goes missing in a Parkinson’s patient.
I carefully time my dose of Rytari at five intervals daily. The goal is to keep the body functioning in the Levodopa “sweet spot,” bracketed between the fluid, writhing of dyskinesia associated with too much Levodopa, and dystonia’s angry spasms and foot-dragging shuffle. Levodopa loses efficacy over time, however, requiring ever higher doses, narrowing the space of calm until it is eventually gone. DBS temporarily widens the sweet spot, but for how long is anybody’s guess.
Fatigue, caused by the triumvirate of insomnia, the disease itself, and Rytari, factors into every aspect of daily life, and any lengthy task risks ambush by a debilitating sleep attack. Coffee unpredictably either energizes my body (normal reaction) or heightens the sleep attack’s intensity (opposite of normal). Still, I tempt fate’s caffeinated roulette wheel daily; screw it, I like coffee.
After 13 years of living with PD, other symptoms recede into the shifting background clutter of routine: a propensity to choke when eating or drinking, rigid, slow movements, loss of dexterity, joint pain, and others. There is a great deal of time for reflection, meditation, and hanging out with the dogs, but the loss of energy leads to apathy, which can result in exhausted boredom.
No alcohol, healthy eating, lots of exercise, and contact with nature provide the raw materials to cope with recurrent depression. Careful contemplation helps define the underlying reason for despair’s crude urges, allowing them to be at least partially released. I choose to avoid the pitfall of obsessing for a “cure,” to either depression or Parkinson’s, and instead live to learn from them.
There are natural pains in life that are meant to be with us, unmasked by alcohol or other drugs. Melancholy, that delightful sadness of marveling at life’s unfiltered authenticity, is perhaps one of them. The contrast heightens my overall happiness and sense of well-being: the payback is worth it.
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2 thoughts on “Part Two: When even coffee turns—Parkinson’s sneaky demons.”
Peter-your words ring so true to me. Having been diagnosed with the same endemic disease, sorrowfully I relate to just about your every written word. The insomnia, fatigue, hoping for a cure in my lifetime have all marked my life (as well as rigidity so painful it brings me to my tears). I am angry for
PD stealing my professional life which I was passionate for. When you speak about Rytary It makes me smile-this capsule has become my best friend! It is strangely comforting to me That there is someone out there who knows what I feel. Thank you, Peter for writing so eloquently about a disease aboat really sucks (not so eloquently described!). Stay vocal, Nicki
Nicki, that sharing some of my experiences has brought you a degree of comfort means a great deal to me. Please hang in there and savor life’s moments (maybe even over a cup of coffee!). Take care, Peter