On Parkinson’s and Finding Reasons to Hope

One of the many gifts of being a Parkinson’s community member is that I often have a lens into other people’s lives. I get the chance to see what it’s like to navigate the disease as a patient, a loved one, and occasionally even a medical professional.

I recently had a chat with a community member whose father had just received a Parkinson’s diagnosis. Having gone through this same process nearly 10 years earlier, I recognized the sense of despair and the feeling of helplessness. I, too, had learned about the disease, a pit of sadness growing with every chapter of a book about the condition. But over time, I learned that there are plenty of reasons to hope, too.

Medications

Learning that you or a loved one has Parkinson’s can be incredibly disorienting. But it helped me to know that there were strategies that my dad and I could take to learn about and manage the disease. And medication is one of them. My dad received a formal Parkinson’s diagnosis in 2013, and almost immediately began a low dose of levodopa. The medication substantially helped him manage his tremors after he’d noticed uncontrollable shaking in his foot. Over the course of time, his dose has increased a fair amount, but he still manages to maintain his independence. There are a number of additional medications that some Parkinson’s patients may take instead of or in conjunction with levodopa, when prescribed by a doctor.

Surgical procedures

My dad’s brand of Parkinson’s visibly worsened within the first 5 years of his diagnosis. We started to worry about his ability to drive, and to stay balanced while walking long distances, which is what prompted dad to look into deep brain stimulation.

The procedure has been around for a while, but it seems to be improving on a regular basis, requiring fewer follow up surgeries and complications along the way. It, essentially, involved implanting a series of electrodes in the brain that intercept or change electrical impulses in the brain.¹

Fortunately, my dad was a candidate for this procedure, and he received it nearly 5 years ago. The procedure can impact Parkinson’s patients differently, but my dad overwhelmingly experienced positive results. His tremors improved. The dyskinesia that he experienced from levodopa declined. And he was even able to reduce the amount of medication that he had to take on a day-to-day basis. While we recognize that deep brain stimulation isn’t a cure-all-solution for Parkinson’s, it did give my dad his life back.

Promising research and clinical trials for Parkinson's

In addition to the treatments and procedure that my dad has experienced, there seems to be a fair amount of promising research and clinical trials in the world of Parkinson’s. Most recently, I read about Elon Musk’s latest endeavor to use a DBS-like surgery to improve outcomes for those who are impacted by neurological conditions and even paralysis. From my understanding, the concept takes very similar hardware and implants it in the brain. But the materials are different, and the number of electrodes that are used are also different. Musk’s company has yet to begin clinical trials, but a competitor began them last year.²

If I could go back and talk to my younger self about my dad’s looming experiences, I’d probably say that my dad isn’t powerless. And there is a lot of interest in the world of Parkinson’s, and finding ways to mitigate symptoms, to identify the disease more concretely and to find it earlier. There’s also a phenomenal Parkinson’s community out there, which is terrific during some of the most difficult times.