Clinical trials for Parkinson’s are saving my life
Even when there’s no cure, participation has its benefits; find out how you can get involved — and check out new research
By Bret Parker Posted on 22 April 2015
When I was diagnosed with Parkinson’s Disease at age 38, l felt that I had lost control over my fate. Before that moment, I could pretty much set my sights on any goal and know that with hard work, I would accomplish it. Having a type-A personality and being a lawyer, for me life had been a series of plans all executed on schedule.
Getting the news that I had a disease that still lacked a cure meant that my health was largely out of my hands. It was completely frustrating. I quickly realized that there was one thing I could do to make a difference potentially for myself but certainly for the millions of other patients with Parkinson’s – participate in clinical trials to try to find better treatments and a cure.
Around the world, 40 percent to 70 percent of clinical trials face delays because they cannot recruit enough volunteers, including healthy patients to serve as controls. I wasn’t even sure how to get involved, but luckily the Michael J. Fox Foundation created the Fox Trial Finder, which allows people to sign up and get information on trials that meet the criteria they set. I logged on and set the parameters for what I wanted.
As a young Parkinson’s patient, I wasn’t eligible for certain trials. And because my symptoms are still in the early stages, I’m not yet interested in trying experimental drugs. I began looking for observational clinical trialsin which researchers observe participants by monitoring their health over a period of time. These studies provide researchers with data that advances our understanding of Parkinson’s and how to treat the disease. By participating in trials, I regained a sense control over my health and found many reasons to be hopeful for better treatments and ultimately a cure.
Tracking our symptoms with wristwatches
The most recent clinical trial I participated in was one of the coolest. For four days, I wore two wristwatches that tracked my movement and recorded data on my symptoms, such as tremor, stiffness and sleep disruption. Intel and the Michael J. Fox Foundation were teaming up in a multiphase research study using a new big data analytics platform to detect patterns in data collected from wearable technologies used to monitor symptoms to help develop better treatments and consistent delivery of medicines. More than 300 observations per second were recorded. Subsequently, other wearable technology research projects have been announced, including one involving the new Apple watch.
Trials can be challenging
Other studies I joined were a little tougher. One involved my trying to walk while carrying something (which can be particularly difficult for people with Parkinson’s). The goal of this trial was to explore how the second task affects different parts of typical movement activities like walking straight, turning or getting up and down from a chair, and how that relates to cognitive functions of attention. For example, when I was asked to do math calculations out loud while walking, it slowed me down and stiffened my movement.
In another, the researchers snipped a tiny piece of tiny skin off my arm. The goal of this trial, by the New York Stem Cell Foundation, was to obtain adequate numbers of the actual type of human cell affected by specific diseases in the case of Parkinson’s dopaminergic neurons. Stem cells carrying mutations of the genes responsible for Parkinson’s provide a source for developing accurate human cell-based models for the disease.
The most challenging trial I participated in, but perhaps the most gratifying, was one studying cognition in Parkinson’s patients – which only recently has been the focus of studies. This trial involved multiple visits, going off my medication at times and getting various scans done (such as an MRI and a PET scan) – two of which required me to be injected with a radioactive chemical. I even had to carry a special letter with me when traveling after an appointment in case I set off radiation detectors when crossing a bridge coming back into Manhattan.
The researchers used advanced imaging methods to study how Parkinson’s alters brain regions involved in cognition and how current treatments for the disease affect these same regions. Because the study involved testing my cognitive abilities, I had to perform various cognitive tests such as completing puzzles, memorizing lists of words and drawing various shapes that were shown to me. Needless to say, on some of these I felt so completely like an idiot that I would crack up laughing. I was relieved when afterwards the researcher told me that some of the tests were intentionally challenging.
Healthy people can do trials, too
I’ve been very lucky to have so many friends and family members support Parkinson’s research by donating money to fundraising events. (My latest is a climb of the tallest peak in Colorado.)
However, most people do not realize that they also can help find a cure by donating their time to research. Most of the Parkinson’s research studies need people without Parkinson’s disease to serve in control groups. You can choose trials that take just a little time and effort, or a lot. For example it can be as easy as answering some questions and taking a memory/cognition test for a half hour or as invasive as agreeing to undergo a spinal tap several times. And there are plenty of opportunities in the middle, such as donating blood, getting an MRI or donating a piece of skin.
On the Fox Trial Finder, you can set the parameters to show trials that need controls.
Participating in clinical trials is a direct way to contribute to finding a cure. Especially during Parkinson’s Awareness Month, I encourage everyone who is interested in finding a cure – whether they or a friend or family member has Parkinson’s disease – to go onto the Fox Trial Finder. As I’ve found with my own involvement in research, the participation and small contribution of time is paid back tenfold by the hope it inspires in millions of people with Parkinson’s and all of the people who care about them.
- My public disclosure of having Parkinson’s: “Parkinson’s Disease: The Last Workplace Secret” (Forbes)
- My blog post for the Huffington Post: “Robin Williams and the Irony of Optimism”
- Last year’s triathlon in The Sag Harbor Express: "Bret Parker Raises Money By Conquering His Fears"
Fox Trial Finder
The Fox Trial Finder was created by the Michael J. Fox Foundation to get more people to take part in clinical trials — people with Parkinson’s as well as control participants who do not have Parkinson’s. Read more.
Video: Why participate in Parkinson’s Research?
New research studies on Parkinson’s Disease
Elsevier has made the following studies freely available for three months, until July 22, 2015:
- Serotonin in Parkinson's disease, Behavioural Brain Research (15 January 2015)
- Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease, Parkinsonism & Related Disorders (In Press, Corrected Proof, available online 9 April 2015)
- Impact of mild cognitive impairment on outcome following deep brain stimulation surgery for Parkinson's disease, Parkinsonism & Related Disorders (March 2015)
- Detecting and monitoring the symptoms of Parkinson's disease using smartphones: A pilot study, Parkinsonism & Related Disorders (In Press, Corrected Proof, available online 7 March 2015)
- CSF tau and tau/Aβ42 predict cognitive decline in Parkinson's disease, Parkinsonism & Related Disorders (March 2015)
- Reasons for mild parkinsonian signs – Which constellation may indicate neurodegeneration? Parkinsonism & Related Disorders (February 2015)
- Factor analysis of the Hamilton Depression Rating Scale in Parkinson's disease, Parkinsonism & Related Disorders (February 2015)
- Relationships among cognitive impairment, sleep, and fatigue in Parkinson's disease using the MDS-UPDRS, Parkinsonism & Related Disorders (November 2014)
- Sleep and impulsivity in Parkinson's disease, Parkinsonism & Related Disorders (November 2013)
- Unbiased Approaches to Biomarker Discovery in Neurodegenerative Diseases, Neuron (November 2014)
Elsevier Connect Contributor
Bret Parker (@bretparker) is a member of the Patient Council of the Michael J. Fox Foundation for Parkinson’s Research and Executive Director of the New York City Bar Association (although the views expressed herein are only his personal opinions). He was diagnosed with Parkinson’s over eight years ago at age 38.
By Bret I. Parker | Posted on 19 Nov 2015
I get it – it can be awkward knowing what to ask or whether to offer advice …By Chris Capot | Posted on 18 Nov 2015
New video series features urology expert on benefits, medical evidence and questions for screeningsBy Guy Bogaert, MD, PhD | Posted on 17 Nov 2015
Elsevier’s free Bedwetting Resource Centre provides research, guidance and toolsBy Lucy Goodchild van Hilten | Posted on 12 Oct 2015
Getting more sun in pregnancy can lead to higher birth weight and later puberty for girlsBy Mary Beth O’Leary | Posted on 21 Sep 2015
New open access journal for all disciplines publishes research from four continents