Hi Laura,

Good to hear from you. I hope all is well.

I am involved in several research studies, some from the NIH and some from the Udall Center here in Seattle. At the NIH I was screened recently for being involved in the project titled "the genetic characterization of movement disorders" and was accepted for participation in that project. This is a long-term project that will last from 5 to 10 years. I am told that I will be in it for the 10 year duration. The sponsor of this particular project is the National Institute on Aging at the NIH. "The purpose of the study is to learn more about the natural history of movement disorders and their causes and treatments. The research is being done because identification of genes will lead to better understanding of movement disorders and treatments." Once I passed the screening test, I was eligible to participate in the NIH Parkinson's Imaging Study. Over the course of the next three days I had an extensive evaluation and then a three Tesla MRI scan, an ultrasound of the brain and a 7 Tesla MRI scan as well as a blood draw. They pay for all travel, food, and housing expenses incurred in participating in this program for visit once a year and they make all the arrangements and also pay for a caregiver to join.

At the Udall PANUC Center here in Seattle I am involved in several research programs:

The galantamine study to test improvements in cognition

A study to test control movements

Alzheimer's disease research Center: participant registry and sample repository

the PaGeR study to identify genes that increase the likelihood of developing certain PD related problems such as difficulties with thinking and memory

PANUC clinical core and data management study (this is a spinal tap one) that puts us on the list to receive new opportunities for healthcare

Obviously, I believe in the benefits of scientific research. I think that being a lab rat participating with scientists is the most likely way that we have to develop new ways to mitigate or find cures for our disease. In that vein I have also donated my brain for autopsy for any help it may give. I think I will be done with it by then!

On a lighter note, my trip to Wisconsin was wonderful. I so enjoyed meeting folks from the Wisconsin Parkinson's Association and talking to such a large group of interested patients and caregivers and doctors. I continue to bike in the basement with my finger in a plastic splint.

Always feel free to ask any questions.

I will write in another post about engaging people in activities.