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MY DAUGHTER HAS PARKINSON’S Anne Shockley I was asked to put into words some of my feelings and experiences as a person with Parkinson’s caregiver from a mother's viewpoint. My oldest daughter, Susan, age 45, was diagnosed with PD in September 2002. She had been really having multiple health issues for several years, but no one could diagnose her problem. Specialist after specialist had examined her with various opinions and we, her family, researched innumerable diseases via the internet and books – all to no avail. Finally, she asked for hospitalization in order that tests and examinations could hopefully tell her what was wrong. Functioning as a wife, mother of two daughter ages 12 and 16, and as curator of a museum was becoming increasingly difficult for her. She was also a studio artist but had lost that ability because of hand dexterity. I was with Susan at the time she was diagnosed with PD. This was a disease that we never discussed since it only happened to older people and Michael J. Fox. This, of course, showed how much our knowledge of Parkinson’s was limited. We were dumbfounded by the diagnosis. The doctor was direct, not comforting at all, and departed quickly to get some medicine. Susan and I cried, hugged tightly and then decided to write down some questions for when he returned. I am not the sole caregiver since Susan has a devoted and loving family; but we operate as a team. Aside from the core family, she also has two younger sisters who live out of the city but provide support for her. ( Susan was already in stage three before she was even diagnosed. She had been hiding problems from us such as not being able to sign her name and tremors. This was not done as deception, but she just kept thinking it would go away.) I want to share who Susan is and what her life has always been about. As a small child she was in constant movement. When we would take walks she would see something different in a cloud, a rock, nature and loved all animals. In fact she got very angry with me because I wouldn't let her keep a chicken in her bedroom-yes a real live chicken! She went to a traditional undergraduate college for two years, graduated from Memphis Academy of Arts and the got her Masters at Cornell. After marriage, she and her husband lived and worked a small farm in upstate New York. The lifestyle included milking cows, plowing fields and planting crops which she enjoyed to the fullest. They moved back to Nashville so that she could pursue her career in art. I have seen my daughter being robbed of the life that she worked so hard to achieve. But as a caregiver and a mother, and as much as I would like to, I can't fix it for her. The progression of the disease has been faster than any of us could imagine. Observing that deterioration of her formerly strong and agile body is so painful for all who love her. She has trouble with balance, gait, tremors and sometimes eating can be a chore. Her job required speaking engagements and that too has gone since she has trouble speaking at all. The mind is functioning, but the body can't respond. I could go on and on about the changes that have occurred in her life and ours, but I will refrain from that. It will bring about nothing positive for her or for us. It can be overwhelming and sad if I allow myself to think about all the negatives, so I concentrate on a positive attitude. My commitment is to do all that I can to help physically and emotionally and to focus on HOPE and relief for all who suffer. It has happened with other diseases and it can happen with Parkinson’s! After Susan's diagnosis, I began to search for as many sources of information as possible although I shied away from discouraging information. I was not ready for too much because I was still digesting the diagnosis. I went to Atlanta to participate in a 5k Race for Parkinson’s with my daughters; I was in hopes that could find helpful resources and a way that I could be Proactive for a CURE. Bingo! The ball began to roll, and in two weeks I was in Washington at the Parkinson’s Action Network Forum learning how to be an advocate with Congress for a CURE. Sue Young of Atlanta, Georgia was responsible for me being there, and I will be forever grateful for her perseverance. I am in a sales business so being an advocate and meeting with the Senators and Representatives was a perfect fit for me. The next step was the Young Onset Conference in Atlanta, which I was attending with my other two daughters. Susan had some fears about going so I had to accept that, although I felt it would have helped her. I would mention the conference but not insist since I needed to respect her feelings. The day before we were to leave her daughters and niece begged her to go, and it worked. It was a wonderful experience for her and for us. And, I tell you this because the total Parkinson’s network has become another family for us. The caring and love we all felt was truly a lifeline that we needed. This was the first Young Onset Conference sponsored by NPF (National Parkinson’s Foundation.) There we met another caring group, many of whom immediately realized that Susan needed help. NPF made arrangements to get her into one of the Chairs of Excellence University Treatment Centers to help stabilize her and hopefully control some of her symptoms. So again someone cared and took positive action. You know, I went to Washington knowing that I was willing to do anything that I could for Susan. And I still feel that way, but my scope of concern has enlarged tremendously because I have met so many brave and courageous victims of the disease, and they all need help. Yes, the pain of watching my Susan suffer is indescribable, and that is always with me because I am her mother. But we all must believe that one person can make a difference. If you can relate to any part of my story I challenge you to become proactive. We all must work together and find a CURE. It can be done and with your help and commitment, it will happen. Please join me and take the first step. ............................... Editor’s note: Anne owns a real estate business in Nashville. She also serves as PAN Congressional Coordinator for the state of Tennessee. Anne Shockley 606 Timber Lane Nashville, TN. 37215 Phone 615 383-5544 Fax 615 298-9952 Email trendex@bellsouth.net
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