“Fierce Urgency Now. Now is the time for a steady hand, a strong voice and a keen sense of smell. I had them once, and I want them back.”

Those are the words of Bryn Williams, a PD patient and speaker at the opening night ceremony of the second World Parkinson Congress. The whole event had that kind of force and poetry, and although almost a month has passed, I’m still running on the energy it produced. What made it a fabulous experience was the cross fertilization of countries and people: neurologists, researchers, patients, caregivers, spouses, drug companies, advocacy groups. And there were people who were not there in actuality but there in spirit – by participating in the quilt project – 39 panels of beautiful squares with heartfelt messages from around the world. The lectures presented by professionals ranged from the role of mitochondria to fundraising to constipation and how it affects the absorption of medication. All bases were covered. The next one is in Montreal in 2013. I encourage you to go.

A video of the opening night ceremony is now up on the WPC website. Try to see it. There’s beautiful singing, moving testimonies from people with Parkinson’s, appropriate thanks to the organizers and contributors, and above all, a common sense of purpose. (Unfortunately the videos shown that night were not picked up by the camera so you need to go to the heading of video competition to see them ) The winners of the video competition include my very own, “Welcome to our World”. Look at them all. You’ll get a sense of how big this community is.

Being around all that science and research was uplifting, but at the same time we know how long it takes for a promising drug to progress from an idea to a pill in the mouth – roughly ten years – and those of us who have PD want something NOW. So what are our options? What can we do to make our bodies function at optimum level; is there anything we can do to stabilize our condition so that if we have to make an adjustment in our meds, it’s a subtraction, not an addition?

We’re on to dance and exercise and music. We know that reinforcing normal movement patterns through moving as much as possible and with joy is very important. The area where I believe we can improve our treatment is through diet and nutritional supplements. Enter Lucille Leader. She is a biochemist from London who works with people with Parkinson’s. ( She participated in a panel I moderated called, “Taking Charge of your Parkinson’s, which also included the renowned cyclist and PD advocate, Davis Phinney and the wonderful music therapist Connie Tomaino.) Lucille Leader is the author of numerous books on PD and diet and nutrition, and works at the London Pain Relief and Nutritional Support Clinic at the Highgate Hospital in London. Examinations of her PD patients include extensive blood work and stool analysis to determine the bio/chemical imbalances that exist in one’s body, and then she prescribes a customized program to encourage one’s body to function at optimal level. You can read more about her analysis of PD and nutrition in her book, “ Parkinson’s Disease, Reducing Symptoms with Nutrition and Drugs”. From introductory remarks, I quote:” Vitamin C deficiency may cause scurvy. Deficiency of vitamin B1 can be linked with beriberi, iron with anemia, essential fatty acids with inflammatory disease and calcium with osteoporosis. Similarly, dopamine deficiency may lead to Parkinson’s Disease. Dopamine is metabolized from dietary protein. Therefore, deficiencies of digestive and other enzymes and their co-enzymes necessary for dopamine metabolism, may compromise this metabolic pathway and further amplify the degenerative process.” So achieving the proper balance between all our interdependent properties is necessary for the body to function at its best. And after all, what are we made of? (frogs and snails and puppy dog tails? sugar and spice and everything nice?) – proteins, carbohydrates, fats, vitamins, minerals and water. So it makes sense that problems can result from improper amounts of the substances of which we’re made. I encourage you to read her analysis. The examination of the effects of diet and nutrition is an area in which our country is behind. As patients, we need to find a way to get clinical studies going to test these waters to determine if we can make the most of what we have.

Another thought – there’s a personal reason why I’m interested in this approach as a supplement to drug therapy. I have often asked myself, where did this disease come from? I have no family history (which supports the idea of co-factors necessary for its development) and I’ve spent my life in a dance studio (where’s the toxic exposure?) The only explanation I’ve come up with over the years that makes sense with what scientists tell us about the cause of PD is that maybe my body is either more sensitive to pollutants or my organs that detoxify – kidneys and liver – aren’t working at optimal level, so that I am exposed to toxins by virtue of improper elimination rather than excessive exposure. If this is true, then working to improve the functioning of those particular organs is essential. (Warning: popular detoxification regimes are not advisable for people with PD. Toxins released too quickly can cause ill health. See Leader’s chapter on detoxification.)

So recognizing the imbalances in one’s body chemistry and improving how it functions is absolutely necessary. And this is why I think that we need to know more about optimal health and how to achieve it. We need to let our doctors know that this is an avenue we want researched. For comprehensive therapy we need our drugs and exercise and nutrition to work together; as patients we need our doctors, researchers and drug companies and advocacy groups to work together. And it is through all of these collaborations and gatherings like the World Parkinson Congress,, that we will find a way to rediscover “a steady hand, a strong voice, and a keen sense of smell.”

By Pamela Quinn