Nic, Lisa, et.al.
Have read with interest the conversations about if and when to tell
children about one's Parkinsons. Thought I'd share briefly my "two cent's
worth". My wife, Judy was diagnosed at 27 years old, when our two children
were two years and one month old respectively. We had the usual debate
about whether to tell friends and associates. Decided yes! Best choice we
ever made, because of all the good support which we have received. We
talked openly around the boys as they grew up about Parkinsons. They were
always understanding and solicitous about their mother, responded with
compassion when she needed to be helped in some way. We used humor a lot
and laughed when "strange" things happened. As our sons became school age
and had friends over, we tried to be sensitive to the reactions their
friends might have. Once Judy asked our fourth grade son, "Do your friends
know about me?" when kids dropped by. He replied, "Yes, Mom, they know you
have a strange sense of humor." As adults, I think they are better people,
more compassionate and understanding, because of the openness in talking
about Parkinsons and other limitations.
One other quick anecdote: Several years ago our youngest son, then a
college freshman, was home and was watching a special on educational TV
featuring those recently seen in the "Frozen Addicts". During the show he
was watching the dyskensia of one of the victims and said, "That's the
first time I've ever seen someone move like mother." I was completely
shocked when he said this, since he had never seen his mother without
Parkinsons, almost 19 years. Judy and I know literally hundreds of people
with Parkinsons, have been part of support groups in several states, and
have been active advocates in a variety of settings. I realized that our
son had never met any of these people, and had never been around any one
else that had Parkinsons. Seeing these "frozen addicts" and their
movement and realizing that others were experiencing similar problems as
his mother had a profound impact on him, one that I will never forget!
Telling our children might not be enough. We may need to introduce them to
some of friends as well.
EDWARD MARTIN, Truman, Minnesota. (written on Mon, Aug 7, 1995, at 10:05
pm)
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