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Sharing Stories: My Last Gift
By Diana Barnwell
Weighing in at about three pounds and containing about 100 billion nerve cells, the human brain is arguably the most complex and mysterious organ of the human body. Most of us don’t understand it, and we usually take it for granted until something goes wrong. What went wrong for me was a diagnosis of Parkinson’s disease (PD).
A diagnosis of a progressive, chronic neurodegenerative disease, for which there is currently no cure, tends to make one — at least it did me — more inquisitive. I wondered what went wrong. And, I decided, that if I could, I wanted to make something positive come from the situation.
I started by joining a support group at the University of Southern California, where I met others who were living with PD and researchers who were studying and treating it.
The more that I learned, the more I found myself wondering how, as neither a medical nor scientific professional, I could contribute to research and to our understanding of Parkinson’s and the brain. I discovered that there are areas of research, clinical trials being one, where volunteers are needed. Such participation in clinical studies contributes to the development of new therapies and treatments and potentially a cure for Parkinson’s.
Equally important, I found out, is the study of the brain itself — not just the brain of a living person, but also the post-mortem brain of someone who lived with PD. In fact, study of the post-mortem brain is essential to understanding the pathology of PD at the molecular level. There are a number of “Brain Banks” in the scientific community dedicated to this work, that accept both healthy as well as diseased brains for study.
Here was something I could do! So, I decided to explore how to go about donating my own brain. What better way to imbue the inevitable with meaning and worth than to donate one’s brain for the research that could contribute to the discovery of a cure for Parkinson’s disease? What a magnificent legacy!
Despite my own excitement, it turns out that not only is the brain a very difficult organ to study, but there are also not enough people donating their brains — either diseased or healthy — for study. This shortage of volunteers, combined with a shortage of funding, hampers the progress made in understanding PD, in spite of all of the increasingly sophisticated technologies.
Why are people not making this essential donation for research? Why, when so many people otherwise give generously of their time, money and expertise, don’t more people make this uniquely valuable gift?
Perhaps one reason is because it means facing one’s own, inevitable mortality. For some people, this hesitation may also combine with deep-seated religious beliefs, cultural constraints, myths and taboos about the brain. Or there may simply be a lack of awareness about both the need for brain donation and the process that is required to participate. All too often, people who want to donate do not make plans early enough. The decision to donate must include provisions for linking the person’s clinical history (records over time regarding symptoms, progression, etc.) with the post-mortem brain. And different programs may have different requirements, so locating the right program can be a challenge. But brain donation can be well worth the effort of overcoming these obstacles.
Finally, I believe there is a deep longing in most of us for there to be something more when we die than just The End. So, for me, the decision to donate my own brain was not difficult. It seemed exactly the right thing to do and a way to both make my death meaningful and allow me to give something back in celebration of my life and grand adventure on this earth. It will be My Last Gift.
Ms. Barnwell is a graduate of PDF’s 2008 Clinical Research Learning Institute.