I have been thinking about the recent columns I have written and realized that they are reflective of the difficult times Stan and I are facing now that the disease has progressed so much – approaching 21 years. I am imagining that caregivers who are new, relatively new or have lived fewer years with PD than we have may be dreading the future with Parkinson’s because of the experiences I have been writing about. Well, maybe not just because of these columns, but the columns are certainly not going to dispel any fears and anxieties about the future for them. I regret that, but I feel most effective if I write about what I am dealing with at that time.
We have had many years of living a very normal comfortable life – eating out, traveling, entertaining, working, attending cultural events – pretty much everything we wanted to do, we did. As time went on, I have had to make many small or large adjustments and plan a little better to be able to do some of the things that became more difficult. But we did them anyway. We are still doing that, but now there are some things that are just too difficult for me or Stan is not up for doing them any more.
think it is important to stress that you can really do just about anything you want to do, if it is important to you. No matter what stage of the disease you are living with, some adjustments must be made to do almost everything. As time goes on and the disease progresses, the adjustments may become more difficult. But if it’s for something you really want, almost anything can be done.
I remember in the early years of Stan’s diagnosis, he would worry about the future and what impact Parkinson’s would have on his and our lives. I really tried to take the approach that whatever happened – we would deal with it at the time. We did not know what the course of the disease would be and did not have any sense of the time frame when things might change. So we lived our lives as we would have and made the necessary adjustments when we had to. I can honestly say that for many years we did very well and did not feel greatly impacted negatively by the disease. When I look back at where we were and what we were like in the early years, everything has changed dramatically. However, things always changed in small increments and steps and none of the changes were ever huge. That made each one easier to deal with. One small change led to another, so none felt particularly overwhelming. Remaining flexible and expecting and adapting to change is extremely important in coping with a chronic disease.
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.
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.