Have you ever been tired of thinking about and dealing with Parkinson’s disease? I really am at this point, so I decided to do something about it. My feeling is that circumstances rarely improve in any substantive way unless we put some ingenuity and effort into helping to make a change for ourselves. I think this is extremely true when dealing with a chronic disease that leaves us feeling so helpless at times.

The first thing that I changed was to decrease my involvement in our Parkinson’s organization. I don’t recommend that for others necessarily, but remember I have been living with PD for 21 years and I have been very involved for most of that time. I have been on the Board of Directors, Chairman of Patient Services, leader of the social committee which plans our picnic and holiday parties, and involved in several other committees. I write this Caregiver Column, and I attend several support groups with my husband. So I have been involved big time, and I wanted to see for myself if there is anything else in life except Parkinson’s disease. I did not want to give up this column because it helps me to put my feelings in writing and I have received an enormous response from many people who tell me how helpful it is. So that was not on the table. BUT, everything else was. I resigned from the Board and from the Chairmanship of Patient Services, and have tried hard not to volunteer for as many things as I had been doing. I don’t want to give up all involvement because I have made many wonderful friends and I greatly enjoy being with them. So I am involved, but in a minor way compared to the past. That was the first step and I felt very comfortable with my decision.

I am a person who has to keep busy and loves to volunteer (my hand seems to go up automatically when volunteers are requested). So I needed to do something else to replace the time commitment I had with the Parkinson’s organization. I applied for the Smithsonian Behind the Scenes Volunteer program in Washington, DC and have just started working at the Smithsonian greenhouses. I will primarily be working with orchids but also helping with ‘cleaning up’ plants that will be used for special occasions at the Smithsonian and other government activities. WHAT a change. I love it and can not believe what a pleasure it is to meet new people not connected with PD, engage in an activity where I think about other things besides PD, and actually feel like I am getting a different perspective on my life. I also greatly enjoy working with plants and getting dirty and having more time outside. There really is life without constantly thinking about or being involved with PD. Maybe I can regain some feeling of normalcy which will definitely help in my caregiving responsibilities. Stan is supportive and knows that I am happier when I am doing things I enjoy, which is great.

If you have reached the point I have where you do not want to invest your life so totally in PD or feel that it is approaching, there are many things that you can change. They don’t have to be big changes like mine were, but just enough to help you feel that you have a life!! And you are the only one who can really make those changes. Enjoyment of life is wonderful and dealing with a chronic disease can erode or take that away if you let it. When I come home from the greenhouse, I feel exhilarated and almost normal. I’m coming back. I feel it. Please don’t let yourself get bogged down with PD so much so that you are not enjoying life. Find something that gives you pleasure and do it – no excuses – make the time!! You will see a difference.

Editors Note: Susan was caregiver to her husband Stan, diagnosed with Parkinson’s disease in 1980. He passed away on August 12, 2008 at the age of 73.

About the Author
Susan Hamburger earned a Bachelors Degree from the University of Wisconsin in Elementary Education, and two Master’s Degrees, in Educational Psychology and Biostatistics / Epidemiology. She has been a kindergarten teacher, a school psychologist, and retired as Bio-statistician at the National Institute of Mental Health.Susan has served on the Board of local Parkinson’s disease support group organizations since the early 1990’s. She has served Chair of the Patient Services Committee, Vice-President and President of the Washington DC area chapters of the American Parkinson’s Disease Association and the National Parkinson’s Disease Foundation. Susan has also spent many hours on Capitol Hill, lobbying our Senators and Representatives to increase the funding for Parkinson’s disease research.