My mood veers between gritty cheerfulness and angry sardonic humor.
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I do not, as I announced some many months ago, have vascular dementia. That was the result of a misdiagnosis.
Not to worry, though, I have something else, something I can – speaking altogether ironically – live with.
It is Parkinson’s disease. The two share many similar symptoms: difficulty with walking gait (rather like wobbling), an iffy balance (somewhat like a sailor negotiating a rolling deck or a drinker leaving the bar), and physical exhaustion after actually doing just very little (getting groceries upstairs from car to kitchen is a snap on good days that becomes an endurance workout on bad days). There is as yet no specific test for Parkinson’s; an expensive brain scan can sometimes confirm what is present symptomatically, while blood tests are used to rule out similar conditions. A Parkinson’s diagnosis relies on an accumulative assessment of visible symptoms.
Parkinson’s original name was also a description: “shaking palsy.” It was later named for James Parkinson, an English surgeon (d. 1824) who refined the symptoms with clinical accuracy, showing how for the first time it differed from other similar illnesses. Not all Parkinson’s patients have tremulous shakes; not all with palsy have Parkinson’s. That’s one of the things he distinguished.
It still remains something of a mystery, a neurological disorder of unknown cause, relentlessly progressive, and with limited pharmaceutical support. The main drug used is levodopa (a name that for no comprehensible reason I confuse with the Oompa Loompas, workers in Willie Wonka’s Chocolate Factory).
Levodopa is the leading drug for dealing with Parkinson’s symptoms. Straight levodopa may leave you hunched over with an agitated tummy, so it is combined with other drugs to suppress vomiting and other uncomfortable things, all in one convenient and inexpensive tablet. It aids the brain in producing dopamine. High or low levels of dopamine are associated with numerous neurological and mental health issues. Levodopa can and does bring relief to thousands of people, restoring mobility, taming the worst parts of the illness.
It was developed in the mid-1960s and used successfully in a trial of 28 people in 1968. The U.S. FDA approval came in 1970. It was such a stunning achievement that it made the pages of Timemagazine. It is not too much to call it a wonder drug.
But the drug and a few other ancillary medications gradually lose effectiveness, though sometimes not so gradually. Parkinson’s may eventually disable the patient to the point of complete immobility. This is regarded as Stage 5. I think I am at Stage 2, some days Stage 3. The array of symptoms seems to vary in severity day to day. Stage 5 happens, so far as I can judge, with some rarity. Usually a patient will die of something else, with Parkinson’s noted as the underling malady. Tracing matters back, I am told I likely had it for several years but it is only now that the symptoms have become publicly noticeable. The key to my eventual diagnosis was my hand writing. Parkinson’s will mess with fine motor skills like penmanship as well with gross motor skills like walking for example. It has even affected my ability to whistle. It’s not so easy using a computer keyboard, either.
By noticeable I mean, just for instance, my wobbling clumsy walking is easily visible. Floor transitions are a positive panic. Moving from hardwood to carpet, from carpet to tile, Parkinson’s plays a Jedi mind trick. Slow down, it tells me, pause, hesitate, take a breath, get your bearings, and think How high I must step to get over the “obstacle”? (What obstacle? It’s the floor!) With Parkinson’s, people can be and sometimes are mistaken for being drunk. Which reminds me, there’s an achingly humorous song about living with Parkinson’s: Blame It On the Parkinson’s
While Parkinson’s is incurable and progressive, constant exercise, making muscle memories, will delay the severity of the symptoms. I have been able to ditch my cane thanks to the boxing class for Parkinson’s patients (they call it boxing; it’s more like gym class for geezers). I’m pretty happy about that. At least I’m not as bruised as the punching bags. But lurking in the future with an incurable mobility disease, a cane may well become the least of my worries. Parkinson’s is no respecter of age, either. It’s not just an old peoples’ illness. Patients in their 20s are not unusual.
Serious illness always poses serious challenges for a patient’s family too. I really can’t say who is afflicted more, the caregiver or the patient. I’ve been both. Questions arise but they are always some variation of “why me?” Why, for that matter, anyone? Why the six-year-old girl who hemorrhaged to death three hours after a tonsillectomy. I can never get her out of my mind and it proves all are hostage to death.
My mood veers between gritty cheerfulness and angry sardonic humor. An evangelical friend asked me, as evangelicals are wont to do, “What has the Bible taught you?” There’s a question, a perfect opening for a sardonic jibe. I was feeling a little dark that day. I replied without pause, “Nathaniel asked a serious question, ‘Can anything good come from Nazareth?’” (John 1:46)
How do we answer that? It’s the old problem of theodicy, a word we don’t hear often. It’s the problem of evil: If God is all powerful and all good why does he permit evil? If he cannot destroy evil, then he is not all powerful. If he can destroy it but does not, then he is not all good.
Frankly I don’t see it as a serious question anymore. It is a philosophical teaser for college sophomores trapped in a 201 college class exploring the philosophy of religion. Philosophy ignores God and the way he reveals himself in Christ, and God is most plainly revealed to us as Christ on the cross. So it is a question of revelation, not of philosophy. Here’s what I mean. When Nathaniel asked Philip if anything good ever came out of Nazareth, Philip did not reply with a philosophical disquisition. He said only, “Come and see.” Revelation, not philosophy, helps me.
Christ will be with me as I die, and Christ will walk with me through the ordeal of my dying, and I will hear him say, “O Death, where is thy victory, where is thy sting?”