Did any of you watch Oprah Tuesday 3/31?
The show was awesome. For those of you that missed it, I will give you a short recap. The topic of the show was Parkinson's disease and Dystonia. Michael J Fox and Rogers Hartman were guests. For me these are topics that are very close to my heart. I'll start with a little personal information that I am, at times, reluctant to give.
For the past 12 years my husband and I host a party to benefit Parkinson's disease. We call it Shake Rattle and Roll. We have a live band in our front yard. (It is really fun.) We raise money and awareness for the disease throughout the evening. An old friend of my dad, Jerry Wueste, was diagnosed with Parkinson's disease over 30 years ago. He and his wife started a local organization called PDSNOKI: Parkinson's Disease Support Network Ohio Kentucky and Indiana. Their organization provides support, scooters, activities etc. for area people with Parkinson's disease. Also they raise funds for research and have donated thousands of dollars to University of Cincinnati Medical Center for Parkinson's research. We give Jerry time to talk about the disease at our party and we donate all of the proceeds to his organization.
Now for the irony; about 3 years ago I was having difficulty with my eyes. After many inaccurate treatments and diagnoses. I was finally diagnosed with dystonia. If you saw the show you will know what I am talking about- Rogers has a dystonia. ( I have a focal dystonia, limited to my eyes. I respond well to botox injections --even though they are NO fun and I manage to continue my ordinary daily activities.) Well, I now am in the care of the same doctor as Jerry for his Parkinson's ( who is awesome- Dr. Espay at UC med center)
So you say how does this relate to parenting?? Well, on the Oprah show, Michael J Fox talked about his role as a father. He says that his disease has actually helped him to become a better parent.He is very aware of his time with his children and makes sure that he makes choices about his time that he wouldn't have before. He has a new book Always Looking Up: Adventures of an Incurable Optimist. All parents could use a bit of inspiration such as this.
Both Fox and Hartman talked about the inaccurate perceptions of onlookers when they see people with this disease. I know I struggle with this. I am very self conscious and careful who I tell about my condition ( well I guess I am letting the cat out of the bag here) because I fear the stigma and the perception that I will not be able to do things as well as others --including parenting. Not true!!
I wonder how many parents out there are dealing with these issues. How do you talk with your kids about being a parent with an illness or disability. What do you think are your strengths as a parent? I would love to hear your stories!!
