“There are moments when everything goes well. Don’t be frightened. It won’t last.”

That’s where I am right now. Everything is stable and going pretty well. Stan’s medications are managing the Parkinson’s well, and the addition of a new stimulant medication has helped with his alertness. I feel like I have most problems under control, I am being more patient (which is much easier when he does well), I have some time for myself a few days a week, and I feel good. What’s wrong with this picture? It is not the typical caregiver situation, is it? And it’s not my usual situation either. BUT, I am trying my darndest to enjoy it, appreciate it, and make it last.

My experience with Parkinson’s Disease has taught me that living with it is a roller coaster ride – no matter the stage of the disease. Early in our Parkinson’s journey there were times when Stan did very well. PD did not really interfere at with our life. But there were also times when I could see it getting worse and he could not do some things he had been able to do. Then he would stabilize and we would adjust to the changes and things went well for a while. Then he would have a couple of bad days and then rally again – for no readily apparent reason.

This pattern has continued for over 20 years. When Stan has an extended bad time, we get a little upset and think that it will stay this way, but he bounces back and does well for some time. I have never really been able to understand why it happens, but I know that most of my caregiver friends experience the same thing. I knew somebody one time that said it must be the barometric pressure. Right or wrong, the ups and downs do happen and I’m not sure it is anything that we cause or can control. The most important thing to remember is that things will get better with time – even though the PWP’s skills may continue to decline.

That idea seems an oxymoron, doesn’t it? I guess the good times are all relative. When I think Stan is doing well, I feel that he is functioning at his best at that time, given that his disease is progressing. When I think he is not doing well, it seems like he has more off times, sleeps more, gets depressed and irritable, and does not walk much. Often I talk to his neurologist about tweaking things a little with a small change in his medication. This last time, adding a stimulant made a big difference. Other times, we have reduced the dopamine agonist slightly. But he does bounce back each time. I’m not recommending any changes for anybody without their doctor’s approval, but this has been our experience. I find it very hard to not try anything I can think of to see if we can see any improvement. It is not a steady, stable disease, so why should the treatment be so stable and unchanging? If you and the PWP go through a long bad spell, talk to the neurologist and see if there is anything that can be done. The caregiver really needs to be involved, be an advocate for the PWP and do anything you can to improve the quality of life for both of you.

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.