STAYING POSITIVE WITH PARKINSON'S (Part 2)

Speech given to Parkinson's Society of British Colunbia Conference "Moving Forward" (October 31, 2010) - Part 2 of 3 Parts.


How do we defeat Parkinson's?

First, we can beat it. We must continually search for a cure. Now that would truly defeat this terrible disease. It would be great if, like polio or tuberculosis, we could virtually eradicate PD from our world. Like never before resources are pouring in to solve the problem of Parkinson's, and researchers are pouring over an increasing supply of information, studies and data. There is hope that in fact the wizards of our medical profession will find a solution to our problems. It will happen. We must never let our enemy convince us that our cause is lost, that Parkinson's will prevail. To the extent we can, we must put our shoulder to the wheel of scientific discovery, urging others to recognize that this is a beatable disease, a winnable war.

This is an especially difficult battle because our neurological enemy has chosen to attack our senior most vulnerable community members. In an age where youth dominates cultural values, the pains and plight of our elderly have often been given a low priority. Given that the largest majority of people with Parkinson's are diagnosed after the age of 60 it is relatively easy for younger folks to conclude, "well, that is just what happens when you get old". Our society has converted our esteemed elders to our ignored elderly. Of course, there is an ironic cultural twist that has occurred. Everyone wants to stay young longer, live longer. But few people seem to be seriously considering how to deal with the consequences of living longer.

So it is the younger members of our Parkinson’s disease community that must speak out and garner the attention of our youthful culture. I must speak for my father who died two years ago from complications related to PD.

I would venture to say that without Michael J. Fox, even with Ali, the cause of Parkinson's disease would continue to remain largely unknown, something relegated to people hidden in seniors facilities. So we must take a page from his book. We must take the battle to the enemy, and convince others that Parkinson’s is a cause worth fighting for.

This will require us to maintain hope, keep a positive expectation that, given enough effort, time and money, some wizards somewhere will be able to discover the vaccine that will truly solve the problem of Parkinson's. And even if a cure is not found in time for us to benefit, then we will have been part of the solution for future generations, putting Parkinson's in its place, freeing people from its grip.

The second way we can defeat Parkinson's is by treating it. Just because we have not found a cure yet does not mean we have to accept that its symptoms need to increasingly sap our strength or steal our vigor. Medications are improving all the time, providing an answer to the debilitating effects of the disease, at least for a while. Despite the challenges that new drugs face when seeking approval, the pharmaceutical industry is discovering more sophisticated, long-lasting, less disruptive medications with fewer side effects. We need to be involved in this process. If we can be participants in studies and trials that enable better decisions to be made, we can be part of the solution for many. Recently surgery in the form of deep brain stimulation seems to provide a way to stem the worsening of symptoms for some time. Stem cell therapy may also provide some answers to the mystery.

If we found better ways to treat or slow down the symptoms of PD, relieving us of its continually tightening grip on our bodies, this would make it easier to bear. It would help us defeat at least the power if not the presence of Parkinson's.

The most important way to defeat PD is to cheat it of its power one day at a time. Even without pharmaceutical and surgical interventions, there are things that we can do. We can meet this disease head on with all the mental, emotional, physical and even spiritual determination necessary to defeat its claims on us. Rather than deny its existence or its effects, or submit to its powers, we can meet PD like a worthy adversary. Look him in the eye. Shake his hand. Come out fighting.

It is the daily battle where each of us has a role to play, whether we like it or not. The one thing about Parkinson's disease is that it is difficult to hide. Other diseases afford an illusion of wellness. PD becomes all too obvious all too soon. Inevitably, we attract the sidelong glances of people on the street who do not understand why we walk the way we do, shake the way we do, or talk the way we do. The fact is we will be watched, assessed and observed wherever we go. We will be constantly measured for how we respond to this disease. Will we give in to this bully? Or will we be a warrior who meets the threat head on? It is through confronting the daily struggle where we can truly shine. Here is where we can fight face-to-face with our opponent.

Of course the question is, "How?" How do we stay positive despite having Parkinson’s? It can seem overwhelming. But let’s recall what happened to the film, "The Wizard of Oz". It was not a big winner at the Oscars, taking 3 awards, two of which were for music. It barely gained recognition during its initial movie house run. But through perseverance and re-releases it slowly grew in favour with audiences, mostly due to television some 16 years after it was released. Now the Library of Congress lists the movie as the most watched movie of all time. It is usually ranked in the top 10 of the best movies of all time.

So how can we too stay positive in our day to day battle?

Continued tomorrow