I’d like to tell youaboutthe first person I spoke with on the phone, whom I had met in an online Parkinson’s chat room - Karen Mankey (aka quiltermom49). She has a special position with the internet support group called PLWP (People Living with Parkinson’s), as she is their coordinator of member services. She has been involved with PLWP since 2003.
I call her one of my special internet angels because she is always there when you need someone to talk to. I’m not sure the woman sleeps or if she is nocturnal. She describes herself as “a country girl” (that’s probably another reason she and I hit it off so well) and I would like to tell you some more about this very special person, whom I also call friend.
Karen is 57 years old and lives in Washington, PA. She is a divorced mother of 4 children and one grandchild (8 yrs). Her children range in age from 18-33. Before she had to retire, she was a home health aid.
Her symptoms were present as far back as 1982 and she was diagnosed in 1998 at the age of 46. She started looking online for information about Parkinson’s and found a Parkinson’s chat room in 1999 where she was amazed to hear people talking about PD and other aspects of their lives. They would even kid and laugh in the chat too! She became chat friends with one lady (sea turtle) for several years and then she checked out a new chat at PLWP2 at the suggestion of her friend in 2003.
Some of the first people there at PLWP2 spoke directly to her and tried to get her to voice instead of typing. Once she got a microphone headset she was hooked on chat. Karen says “the chat room and my involvement there really opened my eyes about PD.” She is in PLWP2 chat most anytime day or night these days.
And that is where I met her. I was impressed by her openness, sense of humor, and her sensitivity and desire to help others. I was also like Karen in the chat room–didn‘t voice much…sat and read or listened a good while before I got more involved. But I got involved and asked Karen for her phone number one day and promptly called her just to find out more about her. She was so kind and funny on the phone and we have been friends ever since 2003. I often tried to get Karen to fly to Tennessee to visit with me and found out she is a scared to death of flying anywhere!
We were able to meet in 2005 in Savannah, GA where we both attended the first Parkinson’s in the Park. That was the first time Karen had gotten to meet many of the people she had talked with in PLWP. Since then, I have had the pleasure of having Karen attend our local support group’s summer gathering 3 times. This event is a casual gathering of Parkinson’s patients and their families and friends at Steele Creek Park in Bristol, TN. I also experienced the excitement and fun with her at the 2007 and 2008 Unity Walks in New York City.
Karen is a strong and resilient person. Since I have known her she has been in one bad car wreck resulting in some broken bones, her home caught on fire, one of her grown daughters has been diagnosed with MS, and on top of all that she’s got PD. But she knows who is in control. She has great faith! And that faith sustains her and is a comfort that she shares with others in PLWP.
In our online friendship we have shared many cheers and some tears, but mostly good things have happened to inspire and uplift us. Just like in real life, internet interactions can have their ups and downs. We have shared in some heart aches and some strong discussions, but ultimately we have come back to the one thing that we share that is stronger than any disagreement we may come up against, and that is we know how hard it is to live this battle, and we are determined not to pull each other down, but will let our determination drive us to pull each other up in love.
The reason Karen likes PLWP is because it gave her so much when she first came there, and she feels like she can not work hard enough to pay back what she has received from the place where people with Parkinson’s and their care partners and friends can meet, learn, love and laugh.
When Karen is not on the computer she enjoys sewing, quilting, playing with her grand daughter, and just being with friends and family. She does have a minor obsession with yard sales.
Her favorite quote is: “To thine own self be true.” (Shakespeare and her dad used to say that.)
Now do you see what I mean about Karen Mankey? She is one amazing spirited woman who gives of herself to help others first. Thank you ‘quiltermom49’ for being there for so many of us…just when we need somebody to talk to and a heart that understands!