Tuesday, November 2, 2010


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

How can we stay positive in our day to day battle with Parkinson's?

Let me play the part of the Wizard. Not the omnipotent one with the booming voice, but the little guy who may have a little bit of the solution for the moment. Most of it is just common sense. But as with common sense, it bears repeating.

For sake of maintaining the imagery, if nothing else, let us return to our 3 friends who sought answers from the Wizard.

The scarecrow thought he lacked a brain. In fact, he simply needed to learn how to use his brain better. Now in our case, our brain is failing to work to its optimum levels. We know that it is not producing enough dopamine to do the job. And, unfortunately, it is producing less and less all the time. The greatest fear that most of us have is that this will lead to mental deterioration or an increased level of cognitive dysfunction.

But there are ways we can fight back. We can learn more about the disease we have been diagnosed with. While we may not be able to delve into the neurological niceties like the medical profession, we can certainly increase our knowledge of the enemy. Further, we can challenge our mental faculties. Do crosswords. Play Scrabble. Take a course in night school. Read. Engage in a discussion with a local support group. Ensure that you are challenged intellectually everyday.

In the end, the Wizard gave the scarecrow a degree in Thinkology. It recognized the scarecrow’s ability to think. Today your reading of this diatribe entitles you to the same degree. You just need to consider how you will employ your mental ability.

The tin man thought he lacked a heart. The fact that he was made of metal, unbending and unyielding, didn't help.  Found frozen, he effectively portrayed a person with Parkinson's who, expressionless with a Parkinson's mask, cannot seem to move.

Often my body, at least the right side of it, feels if it were made out of tin or some other metal. But there are ways to fight back.

Physiotherapy, massage therapy, Pilates, and exercise have all been shown to have a positive effect on the symptoms of Parkinson's, especially those related to stiffness and flexibility. This takes time, as do a number of the other antidotes for dopamine deterioration. But we are not helpless. We are not victims.  Perhaps we need the accountability of a personal trainer, or simply someone to go with for walks, stretches or to community classes. But we can fight back.

Another aspect of the tin man was his need for emotional tenderness. I know, sometimes people with Parkinson's are too emotional. However, Parkinson's too easily becomes a self isolating disease. Most of its symptoms are embarrassing. The tremor, the stiffness, the shuffle, the mask. Social environments are not places of comfort. This is where the gift given by the Wizard to the tin man became appropriate. It was a heart made of velvet and affixed to his tin chest. It was as if to say, I am willing to show my heart to you and share my heart with you. We need to share this journey with others who understand. It could be a support group or just meeting for coffee with one or two others. It is never healthy to be a Lone Ranger with Parkinson's disease.

And what about the cowardly lion? Fear left him quaking and feeling inadequate, lacking in confidence. I believe that is something felt by everyone with Parkinson's disease, at least to some extent. Fear of the future. Fear of disability. The fear of loss. Fear of being a burden. Fear of not being able to cope. Fear of rejection. Fear of inadequacy. We need courage.

Courage is a curious word. It originates from the French word for "heart", "coeur". Literally, it is having heart. This "heart" comes with a sense of conviction to accomplish something in the face of fear. Courage does not exist except in response to fear.

My son served in the US Armed Forces as a Navy medic, a corpsman. He was deployed with the Marines to both Iraq and Afghanistan, and saw action in both places. In discussing some of his experiences, I will never forget what he told me. He said that he was usually afraid, and he knew others were as well. Being shot at, seeing friends wounded and killed by snipers, in fire fights or by IEDs on some foreign dusty road. Who would not experience fear? But the person who scared him most was the fellow soldier who was not fearful at all. That was unnatural. For it is human to be fearful. To be brave, courageous, is to act in the face of fear.

We all have a choice as to what we do with our fears. We can have courage and face our fears, or we can give in to our fears. I do not know about you, but I want to be a person of encouragement. That literally means to put courage, put heart, into someone else. I do not want to be a discouragement, removing the courage from someone by the way I fight my PD.

It is great to have the superstars fighting against Parkinson's disease. People like Mohammed Ali, Michael J. Fox, Brian Grant, Janet Reno and Davis Phinney, to name a few. But what we need is everyday champions who show others what courage means away from the limelight. And in the process we can encourage others to do the same.

Do you remember what the Wizard gave to the cowardly lion to combat his fear? It was a medal with a single word on it: "Courage". Because of this reminder the lion knew that despite his fears he could always have courage.
How do we stay positive with Parkinson’s? We can all do something in the effort to beat it. Fundraising efforts not only raise money for research to find a cure, but also awareness of this disease that needs to be beat.

We can all do something to find ways to treat it. Participation in trials, studies and practical evaluations of alternatives can help offer real promise in the years ahead.

And most importantly of all, we can cheat the enemy of its daily grip on us, meeting our opponent where we live, every day, in every sphere of our lives. We can focus our energies, our creativity and our resources on finding better ways to live with this unwelcome disease. Study shows that how you react to the disease will not only allow you to cope better, but the symptoms will be less.

As for me, I propose to keep on fighting.  I will ride my motorcycle as long and as far as I can do so safely. A couple of weeks ago I went to the World's Parkinson's Congress in Glasgow Scotland to learn more about this disease and the efforts to beat it and treat it, as well as meet people who are doing a tremendous job of greeting its challenges every day. And I will continue writing this blog in my own attempt to encourage others by sharing my thoughts and experiences from wherever the battle may take me.

Back to our Wizard of Oz friends. Were any of them cured? No. It was a number of simple things that made them all more fully alive and functional. As simple as ABC. It was their attitude. It was their willingness to believe. It was their courage. That is how to stay positive with Parkinson’s: ATTITUDE, BELIEVING and COURAGE.


  1. I've been catching up on your posts, reading this one first, and then retracing the week.

    I want to thank you for sharing the reality of the disease and how it is affecting your body. You make me feel normal (PD normal, that is), and I thank you for that. Like you, I don't look like I have Parkinson's, as even my neurologist states, but I have it and feel it, everyday.

    I love life beyond belief, and I work as much as possible, though a 40-hour week is more so the norm now. I'm realistic about the future and what it MAY hold for me, so I'm planning on an early retirement - possibly 2012 - which will put me at 46 years young. : ) I want my work week (in retirement) to be focused around exercise, caring for my family, and simply living a wonderful life.

    Being a workaholic and consumed with professional achievement, I must admit I am very nervous and scared about the prospect of leaving my career. But I can no longer hold on to what was . . . I need to focus on what will be. And less stress will equal a better and healthier life.

    I have a great attitude, I believe in all things good, and courage is the core of my existence, but I do think it's okay to lose a little bit of who I was before PD came along. It's an evolution to me, and it's exciting. I like me more now than ever before.

    Oh yeah . . . and I'm the Tin Man, but my oil is a little blue pill! : )

  2. kj;
    Thanks for sharing the journey with me. It seems to be easier when we link arms on this slippery slope. You encourage me and I so appreciate that. Thank you for showing some of your heart.
    Your friend,

  3. KJ and Bob, thanks for sharing your thoughts to the rest of us - non-PD people.