Our life with Parkinson’s Disease began in 1980. I’ll always remember because it had been the most stressful year of Stan’s life. He was commuting from the Maryland suburbs of Washington, DC to Johns Hopkins University in Baltimore for another round of graduate school. At the age of 45 he was in an Epidemiology training program with other students most of whom were young physicians right out of medical school or right after their residency. Stan found returning to school to be very stressful and frankly difficult after so many years out of his dental training. He did well but I think that he paid a price. I know that PD is not caused by stress, but I feel strongly that it can exacerbate the symptoms in a person who is predisposed genetically or by some type of exposure to whatever nasty thing they determine is killing the dopamine cells.
Stan began experiencing some difficulty writing, and was also exhausted and depressed. I strongly urged him to go to a doctor, where he was given medication for depression. I thought that Stan’s problems were due to the difficult year he was experiencing. I just didn’t know what I could do to help him except provide a lot of encouragement and love. He began to have mild tremors in his right hand when it was still. Thinking it was related to the anti-depressant medication he was taking at the time, we sought a consultation from a neurologist, who told Stan he had Parkinson’s disease.
What is Parkinson’s Disease? I had heard of it but really did not know a lot except that it involved significant shaking and was neurologically debilitating. My limited knowledge changed very quickly because the first thing I did was go to some of Stans’ and the librarys’ medical books and devour everything I could read about it. It’s the best way that I know of to deal with my own fears and anxiety and I also wanted to be able to help him in dealing with the diagnosis. Stan knew more about it than I did and was clearly getting anxious and worried about the future.
I often think I was the right type of person to deal with this kind of news in the beginning – if there is such a person. I have usually been able to take things in stride, deal with them in the best way that I could, and then handle the consequences- hopefully good, but not always. I was not a ‘worrier’. What’s the saying – if life gives you lemons, make lemonade? These traits helped both of us the first few years after Stan’s diagnosis. I was able to listen to him without getting upset and tell him constantly that we would deal with the changes when and if they happened, that I was not going to abandon him, and that I loved him with or without Parkinson’s. I think that helped keep his anxiety in check for a long time and we just continued leading our life in the same way we had done since we had been married. We worked, traveled as often as we could, enjoyed good food and wine, attended concerts, and maintained our friendships. Things were good in spite of the slowly increasing symptoms and declining physical functioning.
Was I in denial? Maybe, but I’m not sure. Maybe denial is okay if it helps us deal with something that is psychologically overwhelming and allows us to absorb the new reality a little at a time. It also could have been that I did not want to focus on something I had no control over when I really was not sure what the course of his PD would be. I knew that the disease could be very different with different people and I was determined not to let a disease destroy our life or our relationship.
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.