Whose viewpoint?

Last week I had lunch with two new friends. Parkinson’s is personal for both. One watched his father die from Parkinson’s. The other’s father was diagnosed three years ago. Both know the toll the disease exacts.

We had very different experiences watching Still, the recent documentary focused on Michael J. Fox. We each saw the value of the documentary in raising awareness and providing insight about the disease. And Mr. Fox’s bravery and accomplishments were already known to us – and reinforced by the production.

But the documentary affected them differently than it did me. Within the first 10-20 minutes, it was already difficult for each to watch. For one it was a reminder of how his father suffered. For the other, it was too tangible of a vision of his father’s future. For neither did the experience provide hope.

A big motivation for this weekly newsletter / blog is to provide hope for those with the disease and those living with them. As one without Parkinson’s, I found Mr. Fox particularly inspiring by way of how he has fought to remain relevant and to raise money to advance our knowledge. So I recommended others to watch it. But for those affected by the disease, perhaps the effects of these documentaries are not as universally positive as I believed.

Given what we know about the generally unstoppable course of Parkinson’s, a combination of worsening function along with increasing risk of clinically important side effects of existing therapies, those with the disease probably do not need to be reminded about their future.

My focus needed adjustment; instead of simply accepting the validity of the popular perspective, I must consider all viewpoints so I can learn what others need and then provide that. It is the sane attitude that allowed me to let go of the accepted view of Parkinson's as a state of dopamine deficiency and discover that the brain cells that control movement (dopaminergic neurons) contain excessive amounts of dopamine to a degree that is toxic. And then I discovered that an existing drug (which we call RB-190) that reduces dopamine levels in the brain is shown in 9 laboratory models of disease to reverse disease pathology.

Consider other viewpoints.Wear someone else's shoes. Keep an open mind. It allows us to understand how to bring hope and how to move further, to establish a path for conquering the disease.

I've put aside the standard approach of restoring or replacing lost dopamine and let the data show me another viewpoint, and by doing so discovered the possibility that dopamine reduction therapy could reverse Parkinson's disease.


Share This

About Jonathan Sackner-Bernstein, MD

Dr. Sackner-Bernstein shares his pursuit of conquering Parkinson's, using expertise developed as Columbia University faculty, FDA senior official, DARPA insider and witness to the toll of PD.
Dr. S-B’s Linkedin page

RightBrainBio, Inc. was incorporated in 2022 to develop tranformative therapies for people with Parkinson's.