By A.C. Woolnough
One of the first medical terms I learned after being diagnosed with Parkinson’s disease over five years ago was the word prodromal. That word is doctor-talk for a symptom that shows up before an accurate diagnosis can be made. For example, sniffles can presage a cold without being certain those sniffles will advance into a full-on cold. Sniffles could be allergies or something else.
Parkinson’s has several prodromal symptoms that do not necessarily lead to a definitive diagnosis. Two of the most common conditions are constipation and hyposmia (loss of sense of smell). Many temporary or even permanent circumstances can cause one or the other (or both) of these conditions besides PD. Because of the lack of specificity, these symptoms can show up 10 years before the doctor says those magical words that no one is eager to hear, “You have Parkinson’s.” Throw in depression, sleep issues, pain or apathy, and things get complicated. That is one reason why Parkinson’s disease is both difficult to diagnose and often misdiagnosed. My doctor says it best: Your symptoms could be a result of aging, Parkinson’s, something else entirely or some combination of those factors.
By the time motor symptoms (tremor, shuffling gait, freezing of limbs) become apparent, the correct diagnosis is easier to make. Nevertheless, even a firm diagnosis of PD made by a movement disorder specialist (a neurologist with an extra two years of training) could still be a false positive. People with Parkinson’s, or PWPs, sometimes have a warped sense of humor — at least I do. I’ve mentioned in the past that the one and only 100% certain diagnosis of Parkinson’s disease is by performing an autopsy and examining the brain.
Certainly, we PWPs would like to delay that degree of certainty for quite some time.
OK. We now have a pretty decisive diagnosis of PD. Now what? Since PD is both chronic (it’s not going away) and progressive (it is going to get worse), most of us do our best to get ourselves educated. Through conversations with our movement disorder specialist, printed materials, foundation websites, conferences and talking with other PWPs, we learn about medication and various therapies to slow the progression and maintain the best quality of life we can. The best physical therapies include boxing, dancing, biking, treadmill, elliptical trainer, calisthenics, yoga and tai chi. What’s the best one? Whichever one you’ll do!
For most PWPs (also called “Parky’s”), at some point medications become appropriate. The gold standard is carbidopa/levodopa that helps replace the missing dopamine. There are other types of drugs that work differently in the brain.
Here is where difficulty and uncertainty come out to play. Some drugs work better for some people than others. Different doses may be called for. Women are not just “little men” and may need a different drug or cocktail of drugs. For example, I take four different PD drugs in different combinations four times a day. This is a different mix than anyone else in our support group — but it’s working for me… as of now. As the disease progresses, I may need to modify the dosage or schedule or even change drugs. If symptoms get too severe, there is the option of brain surgery — the thought of which scares the hell out of me.
The biggest problem with taking drugs (whether it be for hypertension or Parkinson’s) is, as my doctor says, “Any good drug has side effects.” One of my meds (trihexyphenidyl HCl) can cause “word finding” (anomia) issues. I may be in the middle of a sentence — spoken or written — and not be able to come up with the word or name I want. Usually, within two or three minutes, it pops into my head and I blurt it out. Of course, as the doctor says, “It may be the drugs, getting older, something else or some combination.”
My favorite example of anomia occurred when I was looking for a specific word and came up with sharpshooter — a word that both sounds like and has a similar meaning to the word I blanked on, “sniper.” Technically, this may be anomia, but my younger grandkids much prefer to laugh and giggle when grandpa says, “Oops, I got another brain fart.”
Let me close this column with a question. If the headline was “anomia,” would you have bothered to read it?
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