“Cosmonaut for a night”: The experiences of a Silver Santé volunteer

(As described to research fellow Mareike Smolka)

(posted 5th September 2018)

Soon my time as a participant in the Silver Santé Study will come to an end. I am one of more than 40 volunteers selected in autumn 2016 to take part in this big experiment on healthy ageing. I would like to share with you how taking part in this experiment changed my life and why I would encourage other people to participate in similar clinical trials.

Firstly, let me introduce myself. I am a mother of four children and have been blessed with six grandchildren. All of us are musicians. My dad wanted me to become a pianist which is why I started playing the piano when I was five. However, in my rebellious years as a teenager I decided not to follow the career my father had planned for me, but to study accountancy instead. I became one of these first-generation career mothers and worked for several companies. Back then, I also dedicated a substantial part of my time to the political life that I shared with my husband. In Caen, a city in Normandy, France, where we have been living for almost forty years, we devoted time to environmentalist causes, campaigning for local food production and engaging in food cooperatives.

However, balancing all these ambitions and activities while caring for my children took its toll. I never took time for myself and was extremely stressed in certain periods of my life. I am convinced that this is one of the main reasons why I suffer from diabetes and why I do not manage to calm my mind at times. Even now, at the age of 67, my life has not slowed down. For a decade, I have been taking care of my mother who suffers from Alzheimer’s disease. This is a heavy burden to bear and has been a driving force to take part in the Silver Santé Study. My second son sent me the call for study volunteers which he had discovered in a news magazine. He said, “You have to take part, Mom!”, and I immediately enrolled. While my son wanted me to participate in order to carve out some time for myself, I recognized a chance to get active and do something against this frightening Alzheimer’s disease that has not only affected my mother but also caused the death of my uncle. In my opinion, we need to invest in prevention measures so as to preempt the disease before it manifests itself. Scientific research might convince politicians to institutionalize effective prevention measures so as to render them not only available but maybe even obligatory for everyone. Thus, taking part in studies on disease prevention and healthy ageing provides a crucial service that may benefit present and future generations in the long run.

Moreover, the Silver Santé Study has caused an important change in my personal life: I have started to care for myself before caring for others. Undergoing the study intervention, behavioural tests and physiological measurements has felt like taking some time off my daily obligations. The only part I need to warn you against is the sleeping test. I had to walk around the study centre wearing scientific headgear that made me look like the cosmonaut from the film “La Soupe aux Choux” (Cabbage Soup). I felt a bit embarrassed and did not sleep well, but it was a sacrifice I was happy to make in support of a cause that is dear to me!

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