Parkinson

Editorials

Any views represented here are those of the writers alone.

LEGISLATING HUMAN SURVIVAL; WHAT I BELIEVE ABOUT THE MORALITY OF STEM CELL RESEARCH

by EM

1. I am a Catholic and totally opposed to abortion.

2. I believe that women have the absolute right to choose - but their choice is whether or not to become pregnant, not whether or not to abort a pregnancy.

3. I believe that reproductive cloning and research cloning are two totally different processes.

4. I have absolutely no problems with being AGAINST abortion and FOR stem cell research.

5. I consider myself an independent and voted for Mr. Bush. However, his belief that we can't allow stem cell research to happen because it opens the door to evil uses is rather like passing a law that says we can't have guns because they might be misused and kill people, or we can't have cars because they might be driven irresponsibly and kill people. Every scientific advance comes coupled with a mandate for responsible usage in civilized societies.

6. I believe that if Americans stand by and allow Congress to ban stem cell research, which is the most promising medical route to saving millions of lives, we are no better than the Germans who stood by when Nazis began killing Jews over a half century ago. Today, through political advocacy, we have the power to stop passage of immoral laws. But apathy, the refusal to accept responsibility, and fear of speaking out are looming large again. They may be responsible for millions of future preventable deaths, this time not the Jewish people, but the chronically ill.

Em
Diagnosed with Parkinson's in 1990.

Also from EM;

In democracies, we, the people, have the power to shape national and international policy -- to seek the good and shun the evil, if you will. ... To have this power and fail to use it makes us accomplices to the killers. ... The job now is to spread the word and inspire public confidence that the good we want can prevail."

South African Archbishop Desmond Tutu, 1984 Nobel Peace Prize winner from a November 1996 speech

You bunch of snakes! Who warned you to run from the coming judgment?

An individual dressed in clothes made from camel’s-hair, and prone to eating grasshoppers screamed these words towards a group of powerful men.

I have been torn inside for the last several months because I knew either I would have to write this letter and lose some friends or not write this letter and lose myself. What I have to say is not going to be easy to read nor is it easy for me to write. We as a group of individuals who share the commonality of a Parkinson’s disease diagnosis are currently in dire straits, have been in dire straits, and will continue to be in dire straits. Dire straits unless we listen to those words uttered in the above paragraph some 2000 years ago by an individual known as John the Baptist. His remarks were meant as a wake-up call, and my message is also to wake you up as a person with Parkinson's.

Let me begin by telling you a little bit about my circumstance and myself. Some 13 months ago my life took a definite turn in direction. More importantly, my family's life took that turn with me. March 2001 is when I received my diagnosis of the progressive, degenerative and as yet incurable disease we call Parkinson's. I admit to you freely that I had no idea what Parkinson's was, or how it was going to forever change the life of my family and completely alter my lifestyle. I currently take and myriads of medications just to maintain some sort of semblance of normalcy of daily activities in my life.

We as Parkinson's patients control our destiny. And we choose to control this destiny either proactively or reactively. The choice is ours and ours alone. Either we will choose to act, or be acted upon. And from my point of view the answer is the latter in all circumstance. We respond reactively, we are acted upon, and we expect others to do our bidding and work for us.

The time has come to stand up and do something! Right, wrong, new, old, inspired or from rote. Let me demonstrate what I'm saying to you. For my example I'm going to use several health questions from our everyday experience. As in this first example, " A shooting pain down you're left arm is a possible sign of a _____________________ (fill in the blank)? " Here's another one "A mole that changes shape or color could mean _____________________ ? " And as our third and final example "The sudden onset of weakness on one side of the body could possibly be the result from a _____________________ ? " Now, let's check and our answers. The shooting pain down the left arm is a possible sign of a heart attack. And a mole that changes shape or color could possibly mean cancer. The sudden onset of weakness on one side of the body could be the result of a stroke. So how did you do? I'm sure you scored 100 percent! Most everyone I speak to scores 100 percent! Now let me ask you one other question. " Your feet becoming stuck to the floor could be a sign of______________________?" And the answer is Parkinson's, right? Okay, how many of your neighbors, friends, loved ones and co-workers would know this answer? Whose responsibility do you think it is to educate these people you come in contact with? Is the responsibility of the NPF? The A P D A? The Michael J. Fox foundation? Or heaven forbid is it possible that it's your responsibility to educate these people about Parkinson's disease? Listen closely friend, it is most definitely your responsibility to educate and inform the people in your daily lives about Parkinson's disease! You didn't know it but it's one of the responsibilities you have as a person with Parkinson's. Because you see, how did those other questions become so easily answered? How did they become a part of our everyday knowledge base? They have been pounded in our heads over and over and over again. Until they have become automatic.

So the question begs answering. What have you done for Parkinson's disease awareness lately? Come on, what have you really done? Have you spoken to anybody about your condition? Have you spoken to groups of people? Have you written letters to the Editor about upcoming legislation? Have you written your legislators, or at the very least called them to let them know your position on pending legislation and elicit their position? Have you held out your hand and asked for money to be used in research? If not, then it's time you started doing these things. It's time you started carrying your own weight. Because I have to tell you friend, I'm getting tired of carrying you around.

I used to think that it was okay to be meek or mild or even silent about your condition. But that is just plain bull. I have lost my patience with those who either fail to or refuse to come to grips with the reality of this grave situation we all find ourselves in. We must model ourselves after John the Baptist. He was neither meek nor mild, rather he was plainspoken and you knew immediately where you stood and what his position was about.

There are some other responsibilities that come with having Parkinson's disease. Things like having a support group that you attend. Knowing the people in your community who suffer from the same malady that you do. Knowing where these local individuals are at in their progression. Offering to help while you can. And here is something that just recently is really bothering me and probably proves my point more than anything else I've written so far. How many of you have read the new Michael J. Fox book "Lucky Man"? Why have you not read it? Why? How about "Saving Milly" by Morton Kondracke? Why not friend? What about one of Abe Lieberman's books? Why not? Have you already given up? Conceded the fight? Look, you'd better get involved and get involved now. Time is way too short to put it off. Procrastination is not an art form; rather, it's a thief in the night. And the sure-fire cure for procrastination is to do something, anything, right now!

You don't have to get it right or perfect the first time out. There's a learning curve involved and there's also snipers out there. Those, if you can believe it or not, who'd rather tear you down than build you up. And they know who they are and as you become an activist you'll find out who they are also. But you cannot let it discourage you because some people relish in the fact that can sometimes discourage others from trying to make a change.

Finally consider this. When I speak about a society or organization for cancer patients what do you think of? Exactly, the American Cancer Society. When we talk about a group of like-minded individuals with diabetes what organization do we think about? Right again! We think about the Juvenile Diabetes Association. And if there are heart patients that need help or hope where do they go? To the American Heart Association! Of course they do! We as people with Parkinson's need to stand up, get involved, reach a common ground and enjoy the benefits of having one voice, one vision. We're going have to work and your going to have to become involved, so we can all develop and evolve to such an organization.

I'm proud to say that I'm an advocate for Parkinson's disease. Join me and let's lick this thing once and for all.

Terry Bowers