“I can change this disease."

It all started in March 1995 when I fell and hit my head very badly but it wasn’t until December 1996 that I was actually diagnosed with Parkinson’s. So I’ve had this disease for almost 15 years now. For the past 7 years I’ve been taking Sinemet, and have experimented with an array of other things, conventional and alternative, over the years. More about this in future posts.

I’ve been through many phases of this long term disease. For a while after I received the diagnosis, I was very angry. I was thoroughly horrible to be around because I was so angry. People talked to me, and friends tried to help me to stop being so unpleasant. At the time I remember feeling that nobody knew what it was really like and wondering indignantly how they dared to presume that they did. These were dear family and friends who were simply trying to help me. Looking back now I can see how much we were all impacted by what was happening to me and the long term implications of it all. My friends and family were dealing with all their own fears and responses too. Between all this and my victimization and anger, it was not an easy time!

Then came a time of what could be called naive positivity. It was based in avoiding the reality of having the disease. So I jumped from being bitterly angry on the one extreme to avoiding on the other. While I was much more pleasant to be around, I wasn’t living in the real world either.

Then one day one of my doctors * explained to me that it’s like a see-saw, and that I couldn’t be on either end of the see-saw but that I had to find a way to be in the middle. One end is negativity, anger, and rage; the other end is this naïve positivity which is based on avoidance of the truth. But the middle is where everything is in the picture and nothing is being avoided. It’s a place of true equilibrium, a place of honesty and authenticity and it’s my ongoing focus to abide in this place as much as possible.

Underneath all of this, ever since I was first diagnosed, I’ve had a sense that I can cure this disease. It’s a mysterious experience and I’ve often wondered if it’s just wishful thinking, but it doesn’t feel like it. It’s different from the ungrounded feeling of avoidance. It’s real and palpable; it’s a feeling of conviction that I can cure this disease, that it’s possible! This conviction, which is not from my mind but is almost on a cellular level in my body, says, “I can change this!” So I’ve always had this idea that I can do it, and I’ve been continually trying to find a way.

I’ve discovered over the years in speaking with other people with Parkinson’s that there are others with the same experience and conviction that I have. But for the most part they tend not to speak about this—worried that they’ll be seen as stupid, crazy, or totally in denial. Although I’ve met several other people who have this same deeply felt conviction, none of us know how to do it yet.

I went to see a neurologist about 7 years ago. At that time I was more functional than I am now, and as he observed me walking down the corridor he mentioned that for many years he had seen about 40 people a week with Parkinson’s, and that he always has the same question. When I asked him what the question was, he said, “What IS this?” It really struck me at the time, and it’s a question that I often wonder about myself. My experience is that there is something mysterious about Parkinson’s, which may be in part why it seems possible to change it. It’s a disease that is so unknown in many ways.

So one aspect of my journey with Parkinson’s has been and continues to be all about this—finding out how to change it! I’m often around others with Parkinson’s and I see not only them but also the people in their lives struggling so intensely. This disease can go on for many, many years and it’s such a confounding and profoundly challenging disease for everyone concerned.

And what is such a HUGE driving force for me is that it seems that if I can figure out how to change this, then there’s a strong chance that it might work for others as well. Oddly enough, I don’t find the strength to struggle with this question and all of the ups and downs of this disease when I look at it as a way for me to solve my own predicament. Looking at it that way just doesn’t give me any juice. But when I see this question of how to change Parkinson’s in the context of the incredible impact that I could have on the lives of the six million people who have this disease, then finding an answer to this question through the successes and tribulations of my own experience of Parkinson’s becomes something about which I’m fiercely passionate. For this I have all the energy in the world.