A Suggested Revolution in Parkinson’s Research

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We are so obsessed with finding the cure to Parkinson’s and other chronic illnesses that research priorities often ignore the needs of those who, like me, will not live long enough to experience that magic bullet. Yes, search for a cure, but also give us the tools today to avoid falling tomorrow.

A New Paradigm for Parkinson’s Research

There are five heavy hitters in Parkinson’s research, all of whom have been looking for the “cure” for decades as if on a quest for the Holy Grail. Between them, they have spent billions of dollars searching. While laudable, the focus on finding a cure has left only a pittance for research evaluating non-pharmacological therapies that could benefit millions today.

An example of a limited-budget project with the potential for massive benefits is one funded by the Parkinson’s Foundation that will answer whether learning to play the harmonica will strengthen the muscles associated with speech. While the study does not have the allure of eliminating a chronic illness affecting millions, it could revolutionize speech therapy for those with Parkinson's and enable people whose speech is severely affected to have a conversation with friends.

Practical research projects like these tend to be funded for less than $25,000, and sometimes as low as a few thousand dollars, while “find a cure” projects can be in the millions.

Why the Reluctance to Fund Practical Therapy Research?

Finding the gene responsible for Parkinson’s is sexy and could win a Nobel Prize. I doubt even a memorial sneaker would be offered to an investigator who found a way of reinstituting stumble-free walking, even though it would immediately improve the lives of millions.

Certain changes in our research paradigm can have an immediate effect on the lives of people with Parkinson’s. Following are four areas of concern discussed by people living with Parkinson’s and their caregivers in online support groups.

Diet and Nutrition. Plant-based diets have been shown to positively affect health in general and the GI tract in particular. A recurring question for people reluctant to try a plant-based diet is how rigorous they must be. For example, can the diet still be effective if they eat an occasional hamburger or ice cream cone? How soon after beginning the diet will they feel better? Can the diet eliminate the need for GI prescription medication?

Exercise. We have known for many years that exercise has a positive effect on Parkinson’s symptoms. Instead of generalizing about exercise, why not test more precise assumptions? For example, is it better to do anaerobic or aerobic exercises? Is it necessary for exercises to be done at 85% maximum heart rate or are the benefits the same at an easier 70%? How often should I exercise? How many days are necessary to modify a Parkinson’s behavior permanently? And are some exercises, like running, better than others, such as boxing?

Repetition. Research shows that repetition of any behavior eventually results in automaticity. However, we don’t know how much repetition is required to set the behavior firmly in our memory, generalize it, or retain it for easier retrieval.

Muscle Innervation. We know that with Parkinson’s, the brain's signals to our muscles are disrupted. But does the problem occur because of a delay in sending? Is it a precision problem? Does the cause involve a lack of flexibility? And even if everything functions perfectly, will a successful movement be thwarted by the inability to retrieve a behavioral pattern?

And the cost of all of the above research projects? Probably less than a new machine to investigate genes.

The Takeaway

What’s sexy sells, what’s mundane doesn’t is a well-known advertising mantra that, unfortunately, also applies to research. Most funded research proposals are “safe,” involve many subjects, and seek results that can be applied to a large population. Most are “descriptive” studies: They say something about the disease or the person saddled with it. While important, those of us with Parkinson’s would like to see more “prescriptive” studies, ones that offer strategies for improving our lives.

I fervently support investigators searching for the cure. Still, they shouldn’t forget the millions of us who would prefer not to fall unexpectedly, drop a plateful of food at a party, or fumble when trying to undo our wife’s necklace clasp.

Yes, find the cure for those who are still children or not yet conceived. But for those of us too old to witness that cure, give us tools to speak louder, walk easier, think quicker, and have better bowel movements. If you do these things, you may not win a Nobel Prize, but you will have our gratitude.