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How are we defined?

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Parkinson's Disease
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Posted 7/19/2008 1:34 PM (GMT 0)
When I was first diagnosed with Parkinson's disease, I was determined that it would not come to define me, to set the limits on who I am as a person. As my depression worsened and the physical realities of the Parkinson's became more invasive, the lines between who "I" am and "my" disease have become more and more blurred. I can no longer deny they are part of me when they take up so much of my time and energy....more and more everyday it seems. How DO we define ourselves with something as invasive as Parkinson's comes in and turns everything upside down? It certainly isn't like catching a cold.
Posted 8/1/2008 2:07 PM (GMT 0)
It's really hard to accept that you are sick of PD. It really change your life. At first I want to hide the symptoms, I want to be normal as much as possible. I don't want to know them that I have PD, because I don't want them to pity me or I don't wan to be isolated. But as years passed by my symptoms were progressing and you can not hide it anymore, that's the time I talk to my employer. I was only 37 at that time. I'm lucky to have an understanding employer. I'm still here worki'ng with her. My PD is progressing but they did not change their attitude on me, we maintain our relationship and I'm living a normal life. What is important is your attitude and acceptance of the disease. You must learn how to handle it and don't let Parkinson's Disease drives or control your life.
Posted 9/8/2008 4:05 AM (GMT 0)
My partner was diagnosed with Parkinson's Disease shortly after he retired from 25 years as a police officer. We met nearly two years ago and it was love at first sight. He is 59 and I am 46. I must admit that it makes me terribly angry that such a wonderful, caring, unselfish man as this has been stricken by this illness. I'm sure you've all had the same thoughts about your loved ones.

He has his daily rituals which consist of walking, taking meds, researching PD and then trying to relax for a bit and pretend everything is normal. He desperately wants things to be normal, for my sake.

His symptoms consist of tremors in his right hand and leg and now a very slight tremor in the left hand. He has the 'sleep hallucinations' occasionally. The first time he punched me in the nose accidentally while he was having one of his dreams, it was decided I needed a separate room. That was very hard to accept, bloody nose and all.

Our lives will never be "normal" because of PD. But this "abnormal" life is better than any life I had before we met, so we're stuck with each other.

I just want to thank you all for being so brave and honest about this awful disease. I hope to be able to add to the discussion and I know that you all will be a real comfort to me as this progresses.
Posted 9/8/2008 9:10 AM (GMT 0)
Lunar Dance, your question is one I think about a lot......I do not want to BE parkinson's, I keep having diifferent levels of accepting HAVING Parkinson's. The truth is that for me, as the PD progresses it DOES define me more, or at least demands that I keeping letting go of or being more flexible about who I thought I was. Know what I mean? I feel challenged every day to keep my "balance" as to identifying as a "parkie" and as a human. I also just keep practicing letting go of needing to define myself--which is tough! Thanks for posting and helping me think about this more. Spiralheart
Posted 9/9/2008 2:10 PM (GMT 0)
I hope I'm doing this right, as it is my first post. Just registered a few minutes ago.  My response is to lunardance, but for anyone else, of course.  Your post stopped me in my tracks.  What you said is exactly what I have said for the last ten years, i.e. "I will not be defined by PD.  I am not the woman who has Parkinsons or A Parkinsonian; I am a woman who happens to have PD."  Also, the last year or so, those lines for me have blurred too.  I have been very fortunate, but know what may be down the road.  As a friend once said, "Don't borrow trouble."  So...one of the other things I have said is that I could be hit by a truck any day, so why worry about what might happen.  As an extra ounce of serendipity, I use "Dance" as my last name in some writing I do (without much publishing success unfortuantely, but I enjoy the process and try to persevere).

Posted 9/9/2008 3:28 PM (GMT 0)

Lunar Dance - I think I'm getting the hang of this now and wanted to give you my thoughts on how we define ourselves.

There is an exercise that I recall from a human resources training class years ago that consisted of taking a drawing of a window with 9 panes and writing in each pane something about ourselves that we thought was important and represented who we were. 

Way back then, it included my family and the things we did together (camping, etc.).  It also was a lot about training and upward mobility and the things I wanted to accomplish or "goals." I am happily divorced now for over twenty years; I'm retired; my children are grown and I have a fantasmagorical almost 4 year old granddaughter.  My panes have changed over time and even moreso in the last five years.  I still have the family stuff - my grown children, my extended family, and my granddaughter (who gets a pane of her own, of course).  Another important part of my life and part of how I define myself is my friends.  The close ones are as important to me as my family.  I have global topics/panes, such as global warming and what are we going to do about it; politics, as in: the world is changing and the way we govern, do business, etc. must change; and writing, which I continue to do in spite of any major success.  This ties in with my overall belief that I no longer have "goals," i.e. I write because I want to, not because I must publish. And right smack dab in the middle of the window is a pane that says "PD."  I cannot ignore the impact it has on my life any longer; it does limit me in some ways.  However, it is still and will always be...just a part of me.  All the other panes around it reflect what is important and who I am in the Center of my Soul.

Posted 9/9/2008 3:37 PM (GMT 0)
Greensleeves:  I had the same sleeping issues you mention and thrashed about, knocking over a bedside table and lamp, etc.  I also sent a certain individual who was sleeping on his stomach to the chiropractor when I nailed him with my fist just below the neck.  I also yelled loudly alot and the dreams (though I usually didn't remember them) were violent.  I found much later that I  have REM Sleep Disorder which is not uncommon with people w/PD.  I take Clonzapam for it, which helps, though I still tend to talk and sometimes loudly (yell), but the physical stuff doesn't occur anymore.  Ask your doctor about it.  I think the "official" name is Klonipin or something like that.  Google it and REM Sleep Disorder to find out more.  Jude

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