For those who care for someone with Parkinson's disease

Parkinson's disease Caregiver Commentary

Friendships can become invaluable
By Susan Hamburger

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.

I always have been a bit of a loner who had a few good friends and lots of acquaintances. I have enjoyed having friends and definitely have valued them. I also probably took them for granted. I guess that's what you do when you are young. Well, as you can imagine things have changed over the years and the progression of Parkinson's disease. Now, at this stage of my life on this roller coaster ride of living with a chronic disease, I NEED friends. I not only value my friends, I treasure them, I seek them out, and most of all I am grateful for the ones who have stuck with me through all of life's changes.

I have two distinct groups of good friends now. Those who I have known for a long time – such as childhood friends, those I met in my single adult years, and those who I met as a mature adult through my work or socially. The other distinct group of friends is those men and women I have met through Parkinson's disease. This group includes several women I have met who have the disease, but it is primarily other caregivers who are dealing with PD.

Why have my friends become so much more valuable to me? I think there are several reasons – my 'older' friends – those before PD who have stuck with me - provide a real sense of normalcy for me. They provide stability on a rocky road and the feeling that I did and still do have a life outside of Parkinson's. Our connection is very personal - no strings except those of good feelings and old times tie us together. They are very supportive and care a lot about how I am doing. My Parkinson friends are equally valuable to me right now – especially those who, like me, are living with more advanced disease. It is so wonderful to talk about something that has happened and have somebody who has lived with the same thing say, "I know just what you mean." And you know that they do. It provides validation that is essential – that you and your reactions to things are "normal."

For a caregiver to isolate themselves is very unhealthy and can lead to depression and burnout much faster. Interacting with friends also gets you outside of yourself and helps you focus on things that might be interesting or, heaven forbid, even FUN. Value your friends and pay attention to them and they will reciprocate and show you that they care a lot about you also. Don't become isolated. Call one of your good friends and invite them to lunch today.

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 Biostatistician 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 Amercican 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.

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