When my father had Parkinson’s 40 years ago, we didn’t hear much about research. The only time my mother was approached about it was after his death when a local medical school asked if they could autopsy his brain for research purposes. Of course she said yes. My husband and I, on the other hand, have been watching and participating in research ever since his diagnosis nearly 16 years ago. There have been many exciting changes in detection and even some in treatment of this disease and a few have actually impacted our journey.

It started with my husband participating in a couple of medication trials. His symptoms were recorded and then progression was tracked for years through other studies. I have occassionally been able to take part as part of a non-PD control group. We have seen medications developed to help slow the progression of his disease, we have seen gene therapies and tests developed that can detect the illness before symptoms even show. We have seen more effective and easier ways to deliver carbidopa levodopa, the basic treatment for most Parkinson’s patients. My husband’s new controller for his deep brain stimulator has the capability of adapting delivery to need based on biofeedback it can gather from sensors in his brain. We aren’t using that feature yet but maybe in the future?

Much of this research is driven and funded by individuals who were diagnosed themselves. Perhaps that is why things are happening, the people who are in charge understand PD challenges because they are living it. Whereas federal interest in funding can come and go with elections, the foundations created by people like Mohammed Ali, Michael J Fox, and Davis Phinney to name just a few, keep doing the work for all of us. I am sorry that these people were afflicted with this disease, but will forever be grateful for their contributions to finding treatments and, hopefully, one day a cure.