Courage, Tenacity and Love Meet Parkinson's Disease
HOPEFUL LAB RAT
From the beginning of my journey with Parkinson’s, now nine years since diagnosis, I believed that causes and cures would be discovered in my lifetime. That took a lot of faith, since PwPs had been told for, literally, generations that the cure (note there was presumed to be only one) would be there for us in a maximum of five years. Even Michael J. Fox was led to believe that this good news was just around the corner. Money and not much time was all it would take. The five years came and went over and over and expectations were replaced with a slogging determination to keep on keep on just in case maybe magic would happen after all. Although it hasn’t happened yet, I find myself, perhaps foolishly, feeling more hopeful than ever, even though my PD continues along its predictable continuum, albeit slowly.
During 2016 my husband and I have been honored to be part of several research studies, some a continuation of programs we have participated in for several years and others presenting new adventures. Doug continues in the PPMI, dutifully going for neurological testing and spinal taps whenever they call. We both go to Johns Hopkins twice a year for physical and neurological testing and the inevitable blood draws and sharing of our pee. At first I had spinal taps every twelve months, but now my spine has developed some bone spurs, making it nearly impossible to insert the CSF needle without the aid of ultrasound. These two studies are both designed to ferret out biomarkers for PD. I have no idea whether or not our participation is actually making a difference, but I choose to think it is. A lot of people are putting a lot of money and brainpower into making one of those five year cycles an endpoint in the searches for causes and cures of Parkinson’s.
In the spring of 2016 I heard about a study at Oregon Health Sciences University (OHSU). “The Systemic Synuclein Sampling Study (S4) is an observational clinical study to better understand the progression of Parkinson's disease (PD) by identifying the best biofluids and tissues for measuring the protein alpha-synuclein outside of the brain as a potential biomarker in people with PD.” (OHSU) People like me gave samples of selected parts of our bodies. I visited OHSU several times to be sampled: saliva, thigh skin, shoulder skin, blood, colon, mandibular gland and, of course, cerebral spinal fluid. Since only 100 people from around the country are doing this, I felt an immediate significance attached to my participation. Who knows?
My newest research adventure is about to begin. Based on positive motor and cognitive results with rats and patients with Alzheimer’s, a neurology team at Stanford is running a Phase I trial on the possible efficacy of transfusing plasma from young blood (donated by 18-25 year old males) into older folks with mild to moderate PD to see if Parkinson’s patients can also experience positive motor and cognitive results. Eighteen of us will be lab rats in this trial. I travel to Palo Alto in early January 2017 to begin the first of many visits. Of course it’s a long shot, but better than no shot at all.
From experiences at the World Parkinson Congress to meeting patients wherever I speak to having the privilege of working with researchers and their staff, I KNOW there is reason to be hopeful. And, even if I’m wrong, at least I’m enjoying being part of the ride.
To find out research trials that you qualify for visit https://foxtrialfinder.michaeljfox.orgType your paragraph here.