CHAMPs > Parkinson's CHAMP

My Story...the short version

by Karen Mankey


Here is my story...

I was 32 yrs old and suddenly developed a persistent twitch in my pinky on my right hand.  I attributed it to anxiety which was a remnant of the three year long post partum depression I was just recovering from.  For the next 13 years, I experienced many odd symptoms that I explained away easily.  I was employed as a home health aide.  I slowly began to notice the same symptoms that I was experiencing in the Parkinson's patients that I cared for.  But as a single mom of 4 children, I kept moving because I had no choice.  By 1997 at age 46, I was nearly positive that my problems were Parkinson's.  Right side weakness, poverty of motion in my right arm, right leg drag, tremor in my right hand, imbalance and micrographia all were daily occurrences. 

Parkinson's disease had not descended on me suddenly... it came slowly as a thief in the night.  I prepared myself for the inevitable and made a neurologist appointment.  The first doctor took one look at me and said "you have Parkinson's disease."  Even though I knew what I had, all the air left my lungs.  I had a good cry and then promised myself that, that thief would not steal my spirit like it was stealing my dopamine.  The meds he gave me made me feel great.  

I then began the GREAT SECRET.  I told no one about my disease except a few family members and 2 close friends.  I was in the Parkie Closet.  I took me five years to crack that closet door and peek out.  That secret became the "elephant" in the room.  No one dared speak of the "elephant" even though he was huge. 

Then one day I turned on a computer that I knew nothing about and typed in Parkinson's disease.  A long list appeared and I clicked on one entry.  PLWP chat popped up and I met a woman who helped me get into the proper place for help.  I sat and lurked in that chatroom for months.  I was amazed at how these people could speak so easily of their disease.  When I finally began to speak to those folks, the flood gates opened and I was released from my self appointed isolation.  I began my journey of keeping myself in good spirits and full of hope.  I have my moments of doubt, but they don’t control me.  The fine people that I have contact with daily in PLWP are my support system.

2009 will be my 3rd year to participate in the Unity Walk.  It is amazing to see thousands of "Parkies" and their friends and families band together to bring about a cure.  This will be a special year for me because my daughter and my 9 yr old granddaughter will be participating in the Unity Walk with me.  The next generations are taking up the fight against Parkinson's disease.  This is where my HOPE abides.  So you see... as insignificant as we may feel, our efforts are for Parkinson's disease... one by one... we can influence others to take up the fight.  And that's what the Unity Walk is all about!!!  Imagine if each Parkie inspired just 2 more people to support this effort, the result would be HUGE.  I thank all the people in the Parkinson's community for giving me inspiration and the will to keep on putting one foot in front of the other to fight this "thief" called Parkinson's disease.

I would like to end this note with a personal thank you to Nan Abraham.  She has done so much for the Parkinson’s community and the team PLWP.  If it weren’t for her, I would still be in the closet.  Thank you Nan!