Hey kids! Do you want to help out Parkinson’s research? It’s easy…All you have to do is….die.
Of course there are a few requirements: For the Seattle-based program I signed up for, yes, you do need to have PD, be local to the research agency (Seattle), and participate in their ongoing research (described below) which requires visiting their site every two years. (Requirements may vary by research agency.) Once you’ve met the requirements of your local research agency, you agree to an autopsy of your brain tissue. You sign the right paperwork and keep the research agency informed of changes in address, next of kin, and dementia. (If you have dementia, you are disqualified.) And that’s pretty much it. You’ve just given the incredible gift of brain tissue for research.
The research agency here in the Northwest is Pacific Northwest Udall Center (PANUC), Contact: Louren Reed, 206-277-5516. This is one of the Morris K. Udall Centers of Excellence in Parkinson’s Disease Research under the National Institute of Neurological Disorders and Stroke (NINDS). For a list of Parkinson research centers nationwide which may have a brain donation program, click here. Also, you may find helpful this information sheet about brain donation from National Parkinson Foundation.
I found out about this research opportunity while making my third visit to PANUC. (See earlier posts about visits in January 2013 and May 2014. I participate in a research project in which I provide a blood sample (for genetic testing), go through the standard neurological tests (e.g., gait, castanet test, balance) and perform an hour-plus of cognitive testing.
The cognitive testing is quite humbling — for instance, I consider I have a tremendous vocabulary — yet I run out of words about 40 seconds into the minute they give you to come up with words starting with The Random Letter Of The Day. (I know, doesn’t it sound easy?) There are numerous short-term memory tests which I think I did OK on — except for the one where you have to remember symbols (not words, letters, or numbers). My visual memory has never been strong. I have not gotten any results from my previous cognitive testing before. (The objective here is to collect research data, not to measure an individual.) However, this time I asked if I could at least get a comparison to the previous two visits. They were a little vague about whether this was possible. Hmmm….maybe I don’t want to know.