Do you find that your ‘invisible’ symptoms — the ones that people can’t see like sleep issues or dizziness — are the ones that bother you the most? Many people with PD say this is the case, but just 15 years ago, this wasn’t widely known.
The good news is that this past April, a group of scientists got together to speak about these symptoms at a meeting, “Non-motor Symptoms: Unraveling the Invisible Faces of Parkinson’s Disease,” hosted by the New York Academy of Sciences (NYAS) in New York, NY.
The better news? Diane Cook, a person with PD, and an Advisory Council member and Research Advocate with PDF, was a keynote speaker. She spoke with about 100 scientists about the impact of non-motor symptoms on the PD community and the urgency for finding solutions and treatments. Her comments are included in the meeting’s final report, which was published this week here.
Why is this such a big deal?
- First, the conference signals greater awareness of non-motor symptoms of PD. Scientists have long understood the impact of the symptoms they can see — tremor, slowness and dyskinesia. The conference shows how far the field has come in understanding symptoms doctors cannot see — depression, fatigue, orthostatic hypotension, sleep disorders. There is still work to do — unfortunately non-motor symptoms tend to be understudied by scientists — but PDF is making inroads by funding studies into the most debilitating of non-motor symptoms such as fatigue and gastrointestinal symptoms.
- Second it illustrates that scientists are beginning to listen to patients. Does this concept sound less than revolutionary? It may seem common sense, but the truth is that 15 years ago, non-motor symptoms were still misunderstood and a person like Diane would likely not have been invited to share her experience. As Diane herself told us: “PD used to be called just a movement disorder until we — the patients — spoke up about the non-motor symptoms that we were experiencing. For example, neurologists used to say that pain was not associated with PD … until we convinced them it was. Now PD is classified as a multi-system disorder!”
This illustrates just how important it is for people with PD to have the opportunity to speak up … to tell scientists which issues more urgently require solutions and new therapies.
In PDF’s work, we call this ‘patient engagement.’ After 10 years of advocating for patient engagement in the PD community — which means making sure that scientists hear from people with PD who can help to inform their research — we think Diane’s involvement at the NYAS conference demonstrates progress. And that progress is due in part to people like her who have been trailblazers.
But we need more advocates on board! So if you’re interested, learn more about our online research advocacy course here or read our articles below.
And please help us thank Diane for her continued work to share her PD experience with scientists. We know that because of her, some will better understand the urgent need for treatments for non-motor symptoms.
- PDF Parkinson’s Advocates in Research program
- “Impatient for Patient Engagement in Parkinson’s Research”
PDF is committed to making patient engagement a reality in the PD community. We know that when the two sets of Parkinson’s experts come together – those living with it and those dedicating their careers to studying it – we can more quickly solve, treat and end Parkinson’s disease.