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Well, after much urging (and that is a mild characterization) by Barbara, I finally visited a neurologist. As doctors are wont to do, he "spread the wealth" by referring me to another neurologist (one who specializes in motion disorder neurology). When you give a kid a hammer, everything looks like a nail, so I wasn't surprised when they agreed to diagnose me with what they characterize as, "Tremor-Predominant Parkinson's Disease." The literature lists four symptoms, and suggests that two must be present for a diagnosis to be made, and since I have only one (tremor, the others being muscle stiffness, slowness of motion, and postural instability) they are actually guessing. I suspect, however, that they are right. The disease progresses through 5 stages. Stage one consists of: Symptoms on one side of the body. Stage 2: Symptoms on both sides of the body, but no balance impairment. Stage 3: Balance impairment, mild to moderate disease, but still independent. Stage 4: Severe disability, but still able to walk or stand unassisted. Stage 5: Wheelchair bound or bedridden unless assisted. Doesn't that sound like fun? I can hardly wait to see how the scenario plays out! This is not exactly the way I had planned to spend my "Golden Years."
Actually, while this is a convenient way to characterize the progression, it has nothing to do with the underlying mechanisms. Another approach to the progression is to characterize the response to medications. The first stage is the newly diagnosed patient, who functions without medications. Then comes the period where the patient has a stable response to medications. Next, is the stage when it is possible to predict when the medications will wear off, then the stage with unpredictable on-off fluctuations. Somewhere in this progression, the patient may develop disabling involuntary movements called, "dyskinesias." Decreasing dosages and increasing frequency of medications may help some, but this itself, since it involves injections, can be a problem. The end stage is a yo-yo response where the patient alternates between a severe off state and disabling dyskinesias. Does this sound any better than the first set?
On a biochemical level, the root cause of the disease is the death of a certain class of brain cells called the substantia nigra. I won't burden you with the chemistry, but these cells produce a chemical called dopamine. Dopamine is a neuro-transmitter that is involved in passing electrical impulses from one neuron to another in the brain. When it is not available, nerve impulse stops, and with it, motion. This is an over simplification, as dopamine is probably involved in more than 100 different pathways, ranging from motion to emotion.
The official line is that there are medications (that lose their effectiveness over time) to treat the symptoms by increasing the amount of dopamine available, but nothing to stop or retard the disease progression (e.g. the death of the cells of the substantia nigra). That is the official line. There are, however, two or three drugs that appear (in studies designed to test their effect on symptom suppression) to retard the actual progression of the disease. These are now being tested in humans (stand by for results in 5 to 7 years). In studies using rats, these same drugs appear to prevent the distruction of the substantia nigra. The second neurologist I saw, prescribed one of them (azilect, or generic name rasagiline) for me. It is a once-a-day pill that costs $8.62 a copy (best price from the internet). The Sun Life Pharmacy will give me an employee discount (their price plus $1.50) and sell it to me for $5.45 a copy. This price is for a 1 milligram pill. Given that a 0.5 milligram pill sells for 1.4 cents per copy less, someone is making money hand over fist (the justification, of course, is that they have to recoup the development cost). At any rate, the best scenario works out to $1,959.48 per year, or if I plan on living another twenty years (80 years old), about $40,000 total. Because that is a significant amount of money to risk on something that might work (and just as easily might not), I am pondering exactly what course I should pursue. Choosing between becoming disabled and allowing your wife to survive after you're gone, is not a trivial matter.
The time course of the disease progressing is a subject that neither neurologist would address directly ("individuals vary") but the tremor predominant version appears to be slower than the variant characterized by stiffness. One of the quacks had me in stage five in 10 to 15 years and the other in 15 to 20. I can think of better ways to make a living...
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