Kevin’s journey with Parkinson’s disease

Kevin and his wife, Janelle

In 2015 Kevin Genth, a Boston Scientific employee, was diagnosed with Parkinson’s disease (PD), a progressive neurological disorder that affects movement, including tremors, stiffness, and difficulty with walking, balance, and coordination.

Worldwide, more than ten million people are living with PD.[i] The first line of treatment for people diagnosed with PD is medications. As the condition progresses, treatment options vary and may include increased doses of medications and surgery, including deep brain stimulation (DBS) — a procedure that involves implanting electrodes in the brain to deliver electrical impulses as an adjunctive therapy in reducing some of the PD symptoms that are not adequately controlled by medications.

Kevin chose to pursue DBS. In recognition of Parkinson’s Awareness Month, we spoke with Kevin to learn more about his experience living with PD.

Can you share a little about your journey with Parkinson’s disease?

Looking back, I can see the early signs more clearly. Certain tasks, like reading and writing, required much more concentration than usual. It wasn’t until I started feeling tremors in my legs that I knew it was time to see a neurologist. My grandfather and aunt both suffered from PD, so I went into that appointment with some certainty about my diagnosis, but that doesn’t mean I wasn’t hoping for a different outcome.

After my diagnosis, I started on medications, but over time the disease progressed, and my doctor mentioned that I was a prime candidate for DBS. Because I am a Boston Scientific employee, I was familiar with the therapy, but I wanted to learn more about the procedure.

My wife is the one who convinced me to move ahead with DBS. In 2018, I received the Boston Scientific VerciseTM DBS System, and I’m so grateful that I did. My quality of life has greatly improved. Without the DBS technology, my tremors are significant, and I can’t do many things on my own. With DBS, I can stay physically active and continue working, which I am so thankful for.

Watch as Kevin demonstrates how his DBS system helps manage his symptoms:  

What factors have contributed to your success with DBS?

Four things have helped me, not just with DBS but also living with PD. The first was having the ability to get answers to all my questions about DBS. My wife and I were fortunate to be able to consult with great doctors. Working at Boston Scientific, I was also able to connect with colleagues on our Neuromodulation team who know a great deal about our device. I knew exactly what to expect, and it reinforced for me the importance of seeking out as much information as possible.

Second, having someone who supported me and helped me be persistent with my treatment was essential. Because PD is a progressive disease, the symptoms evolve, and treatment may need adjustments. My wife helps me a lot in this regard. For example, she has noticed a change in my motor skills and encouraged me to ask my doctor if I need adjustments to my programming.

The third is patience. Managing PD symptoms is a journey and there is no quick fix. For instance, I’ve had to adjust my medications and my DBS device’s settings. Getting everything just right as the disease progresses requires patience and perseverance.  

Lastly, it’s important to have a positive attitude remind yourself that tomorrow could be better than today. Some days will be better than others. I don’t take the good days for granted.

What do you wish more people knew about PD?

People often think that PD only affects you physically, but it can also have a big impact on your mental health. Depression is a common symptom and one that I experienced for about two years after my diagnosis. It was very hard because I didn’t know that the way I felt was related to my disease. Luckily, I asked for help and received the care that I needed. After that, the world went from black and white back to color. Raising awareness of the non-physical symptoms is so important because about half of people[ii] with PD will suffer from anxiety or depression during their illness and many cases are undiagnosed or untreated. If more people were aware, they would know to ask for help.

To learn more about DBS, please visit DBSandme.com.

Safety information for the Vercise™ Deep Brain Stimulator Systems can be found here.

Results from case studies are not necessarily predictive of results in other cases. Results in other cases may vary.

 

 

[i] http://parkinson.org/Understanding-Parkinsons/Causes-and-Statistics/Statistics | Accessed 14MAY2018

[ii] https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression

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