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Thursday, June 18, 2015

Living With Parkinson's #11 -- I'll Win the Nobel Prize!

Byline: Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.
A few nights ago, I attended a lecture sponsored by the Israeli Parkinson Association on the history of pharmaceutical treatment for Parkinson's and the various medicines presently under research. The speaker, Dr. David Arkadir, a neurologist at Hadassah who specializes in movement disorders (that's medical jargon for the guys who treat Parkinson's and similar neurological disorders) managed to make what I had assumed would be a boring lecture into something absolutely fascinating. 

Dr. Arkadir pointed out that although in the early 1950s scientists already knew that dopamine existed within the brain as well as in organs other than the brain, no one thought it had any real function. They assumed that it was simply "there," a little something or another that permeated our brain and organs, and yet had no use whatsoever, a decorative thingy placed there by our Creator to stump scientists and provide them with an opportunity to do research.

Then, in the late 50s, a researcher somehow succeeded in removing dopamine from brains of rabbits, and much to his amazement, all the animals developed a form of Parkinson's. At that point, the scientific community realized that dopamine actually did something, and it wasn't long until they came to the conclusion that a lack of dopamine caused Parkinson's. Now the challenge was to find a way to put dopamine back into the brain.

It took almost another decade until researchers gave levodopa to humans. Levodopa is the precursor of dopamine (which means that the body uses it to manufacture dopamine), and is able to penetrate the blood brain barrier, a wondrous protective wall surrounding our brain that prevents contaminations in the blood from entering our main nerve center! Although levodopa was touted as a "wonder drug" that could completely relieve all the symptoms of Parkinson's with negligible side effects, the scientific community realized from the beginning that it could also cause serious side effects. Yet even today, fifty years since its discovery, levodopa remains the stellar treatment for Parkinson's. 

Toward the end of the lecture, someone asked, "Is there anything out there that has been proven to slow down the deterioration associated with Parkinson's?" And I know this will not come as a shock to you, at least if you've been reading this column, but Dr. Arkadir's response was, "exercise" (now wasn't that a real chiddush?). Then he said something that for me was an epiphany, one of those "ah hah!" moments. Researchers believe that the reason exercise is so beneficial for Parkinson's is that exercise causes our bodies to produce a chemical called serotonin, which somehow (and don't ask me how. I'm a layman, not a doctor) enhances dopamine levels in the brain. So far, so good. Then he mentioned as an aside that scientists believe that one of the reasons people like chocolate is that it somehow causes a surge of serotonin in the brain, which in turn provides us with a surge of pleasure.

Well, I could certainly relate to this. Chocolate! Pleasure! The two certainly go together, no matter what the weather (oh, come on, Debbie, stop it already. This is a serious article). Suddenly it dawned on me: if increasing the serotonin in our brain can help control Parkinson's, and scientists believe that chocolate does just that, then it would stand to reason that (please applaud me when I win the Nobel prize! This is incredibly ingenious!) CHOCOLATE CAN CURE PARKINSON'S!

Can you imagine? I will be able to spend my days relaxing on the recliner that I will buy for the sake of my health (now that is what we call real mesirus nefesh) while eating bar after bar of fine Swiss chocolate (if I'm going to do it, I'll definitely do it right). I will cancel all my exercise classes and buy colorful tent dresses to hide my bulging waist line. Who cares? I wouldn't mind being fat (or, perhaps, to be more exact, fatter), as long as I'm healthy. Isn't that what really counts?

But my bubble was quickly burst after I emailed an abstract of my theory to the doctor. Dr. Arkadir's response: There are theories that chocolate increases serotonin production, but this form of serotonin is a different compound than the one involved in Parkinson's disease. So, as far as I know chocolate is not suggested as a cure for Parkinson's. Still, it tastes good.... At least he agrees with me on one point!

Another interesting thing that happened at the lecture was that Dr. Arkadir, a prominent movement disorder specialist, brought his mother to hear him speak, and he even introduced her to the audience! During the lecture, I surreptitiously turned around to glace at her several, and I could literally see her kvelling with nachas. At the conclusion of the lecture, I went over to her to compliment her on raising such a wonderful son and then raised her kvelling level by liberally praising him for everything he does for the Parkinson's community. Her response floored me: "I get on the 4:20 a.m. bus to the Kotel every morning. At the Kotel, I daven for his success, and that all his patients, together with all of Klal Yisrael, have a refuah shleimah." With a mother like that, it's not surprising that the doctor is so successful.

The main focus of Dr. Arkadir’s lecture was an overview of the new Parkinson's drugs either presently on the market, or in the process of receiving FDA approval. They are all based on levodopa and include patches, large capsules containing numerous mini-capsules, accordion-shaped pills, and even a pump, similar to an insulin pump, which slowly delivers the medicine straight to the blood stream. These products were created to solve the problems that occurs when the effect of the levodopa wears off, leaving the PwP (that's the standard acronym for Person with Parkinson's) not able to function until he receives his next "fix." And yes, I am using the word "fix" davka, despite its association with drug addiction, because, as one woman with Parkinson's so eloquently described it: "When the medicine wears off, I feel like a junkie must feel, all shaky and unable to cope, just waiting for the time that I can get my next fix." 

People often find it difficult to understand that PwP have on and off times, and that their "off" times are often caused by the effect of the medicine wearing off. A PwP may be functioning perfectly normally, and then, suddenly, CRASH, he can barely place one foot in front of the other or even lift his fork up to his mouth. The experience of being off is one of a thick, heavy, exhaustion, a palpable darkness. Very often, people react with comments such as, "Oh, come on, you're  really okay," or, "Just hold out another five minutes, then you can rest." But the person isn't okay and can't continue functioning for even another five seconds, let alone five minutes. 

Just to end this article on a positive note, an acquaintance of my husband's who has been following this series in the Binah sent my husband an email stating that every Wednesday morning he drives into our area of the city to do his family's shopping at one of the major supermarkets, and that he would be more than happy to do ours at the same time. He didn't even give us a chance to say no; the following Tuesday night I received an email asking me to please send my order, and that delivery should be somewhere between 11 to noon! Mi k’amcha Yisrael

And in case you’re interested: yes, the doctor reviewed this article and gave his haskama.

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