Why, there's a change in the weather,
there's a change in the sea,
So from now on there'll be a change in me,
My walk will be be different, my talk, and my name,
Nothing about me's going to be the same
"There'll Be Some Changes Made" - lyrics by William Blackstone
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| Sargasso weed
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It was an odd season last year. Long periods of lingering Sahara dust. Much wind and huge drifts of Sargasso weed. The weed got so bad on the windward side of some of the islands that the fishermen couldn't get out of their harbors. Huge drifts fouled the beaches and there is great concern that these great stinking masses of rotting seaweed will drive off the tourists.
Inside Queen Emma, the climate was also changing. The captain was having more and more trouble rationalizing a whole variety of weird symptoms as just a normal part of aging. A sort of general lassitude and self-alienation that kept us aboard for whole days at a time reading and listening to music could easily be explained by the march of time or just the high winds. A complete loss of the sense of smell is only occasionally noticeable when the admiral complains. The constipation can be written off as a side affect of the antibiotics taken to cure pneumonia left by months of a lingering phlegmy cough. The cough? Maybe the result of the dust.
When ashore, the admiral began complaining that I was dragging my feet and walking funny. No easy arm swing and a stiff, slightly bent gait. In fact, the lost sole of my right sandal testified to the change. When I started to have more and more trouble keeping my weather notes legible, I began to google Parkinson's Disease. A close friend had died of complications of the disease quite recently and it did not take an extraordinarily strenuous effort of denial to bury the fear that I was in the early stages of sharing his decline.
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there'll be a change in me
We ended the sailing season with a fabulous wedding party in Miami. Stopping over on the way home to Berkeley for hurricane season we celebrated along with our Berkeley clan. Some of the celebrants I met when I first came to UC in the late 60's. Others I have known since starting a family. We had raised our children together. Apparently my stiff face and slow movements were more obvious to those with whom I don't share quarters on the Queen Emma. De Nile is finish.
After an exam by a neurologist at Kaiser Permanente (thank you Obama and ACA), he wrote the diagnosis on his business card: "Probable idiopathic Parkinson's Disease". "Probable" because the definitive diagnosis will be had at my autopsy. "Idiopathic" because there is no external culprit to be blamed. "Parkinson" after the doctor who first described the advancing tremors and stiffness. The disease is caused by the death of the cells which produce dopamine. Dopamine is described as a kind of lubricant for all the nerve impulses and whose lack produces a wide range of idiosyncratic symptoms ranging from a palsy in the hand to slow and stiff movements to total freezing. The disease is progressive and (not yet) curable but the symptoms can be eased by taking Levadopa. PD does not itself lead to death and many live long lives with the symptoms controlled by the drug. In fact, the more practical confirmation of the diagnosis of PD is if Levadopa relieves the symptoms. In my case, the relief was dramatic.
There is no standard progression for the disease; each case is unique. There is no treatment other than to exercise and eat well and try to preserve your flexibility. It feels more like accelerated aging with the advantage that it doesn't hurt and the treatment is mostly harmless. Once I recovered from the initial shock of facing my own mortality, I decided that there are worse fates and that the best plan in the face of this uncertainty is to go sailing and enjoy life. I want you, Dear Reader, to know that the suspension of my blog was a symptom of PD and not a sign we had sunk the boat or given up cruising. I want you, Dear Reader, to have a little patience if you are stuck behind a shaky old man at the dinghy dock. I want you, Dear Reader, to know that I don't regret a moment of the last 13 years my dear admiral and I have spent in the Caribbean and that we plan to similarly fritter away as many more as we can. |
