My doctor gave me reading material when I was diagnosed with Parkinson’s disease.  I promptly threw it in the trash when I got home from his office.  It took some time to change my tune.  It was so stressful hiding Parkinson’s from friends and co-workers.  Eventually, like a child sticking her toe in the pool to see how cold the water is, I started to look for information about PD.  I made the mistake of going to my local library. They had books about PD, books from the 1970’s. The dire predictions in those books just made me angry.

I could not go on like that.  I became more receptive to my doctor’s realistic yet optimistic predictions for my future.  I started to feel better and yet I still felt alone.  That is until October 1999 when I watched a story on ABC’s 20/20 about a woman with PD, Joan Samuelson.   Not long after that, while surfing the net,  I found the Parkinson’s Action Network.  I was no longer alone.

I did the lobbying on Capitol Hill and although I would get teary-eyed at times, I never really cried.  I was someone who always liked to be in control.  I remember some years ago, a co-worker made the comment to me, “Patti, you are so reserved you should be British.”

Well, something happened to my control and reserve while I lobbied February 8th on Capitol Hill.  I did not cry.  As Gerry Haines, my dear fellow volunteer, put it, “Patti, you did not cry.  You sobbed.”   It was only upon reflection later that day that I realized where my sobbing came from.   I have always felt I express myself best by writing.   People tell me they like what I write.  Writing is therapeutic for me as well.

Verbally expressing two incidents relating to PD to Senator Arlen Specter’s Legislative Aide brought on my sobbing.  I find it interesting that one incident was soon after I was diagnosed and the other just happened in January. 

After I was diagnosed I felt such rage that I almost trashed my condo.  I do not recall what was in my hand that I was set to hurl across the room.   What I do remember is that something inside me stopped me from doing so.   And the rational part of my brain that was still working made me ask myself, “Patti, do you really want to patch up the walls and paint all over again?”

Somehow through my sobbing I also told the aide of the incident in January.   It was a snowy Saturday morning and only 9° outside.   I had to pick up from church sandwiches that I had ordered.  I could have waited until Sunday.   But the sandwiches were not the issue.

I still try to prove to myself that I can do things.   I am hanging on to my independence.   So even though my meds were not totally “on”, I went outside and down the seven steps from my condo.  I find even when  I cannot walk well,  I can do steps either up or down.   I guess it is the visual thing.   The steps give me momentum. 

Well, halfway to my car, (I had parked further away from my condo, once again trying to prove something to myself.) my momentum was gone and I froze.   It took ten minutes to make it to my car.  It should have taken  ten seconds.   I drove my car to a parking space closer to my condo and called Linda, my sister, on my cell phone.

The cold air had really made my muscles contract and I could hardly move.   Linda lives only two blocks away from me.  She told me to stay put; she would be right over.   So I got out of my car and headed toward my condo.  After all, it was only yards away from me.   My cane and I just froze.

Shortly before Linda arrived, one of my neighbors, Chuck, pulled up in his car.  With Chuck on one side of me and Linda on the other,  I just sobbed.   No British reserve anywhere in sight.  When I reached the steps leading up to my condo, I just flew right up the stairs.   Chuck, who by then was behind me, could only exclaim, “WOW!”

I thought if only my world revolved around steps, I would be doing fine.   But my world does not revolve around steps.  My world revolves around all the people with PAN and I am doing great.