An interview with Bobby Krause: Triumph over Tremors on August 28, 2024.
Biography
As a college athlete turned sales executive and father of two, I loved to live large and make the most of every moment. This was until a “nervous tick” began to occur in my left arm. After a series of doctor’s appointments, MRI’s and a pivotal appointment with a neurologist in 2016, my and my family’s lives were forever altered when I was diagnosed with young onset Parkinson’s Disease at the age of 42.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure? After my diagnosis, the harmless tick evolved into a relentless, debilitating tremor throughout the left side of my body. These tremors caused constant pain, embarrassment and a significant decline in my quality of life. I struggled to focus on life happening around me. I could not conduct business meetings without distraction. The tremors escalated greatly under the pressure of intense situations like coaching my son’s basketball games. I wondered how life could go this way.
In 2020, a glimmer of hope emerged when I learned of clinical trials underway for a groundbreaking tremor treatment, called Focused Ultrasound. Thanks to an incredibly generous employer, along with an exceptional medical team at the University of Penn, my life-changing therapy was scheduled for June of 2022.
I’ve had the distinct honor of sharing my journey with Parkinson’s Disease and my Focused Ultrasound therapy experience at prestigious venues like Capitol Hill, Princeton University and within communities such as Rock Steady Boxing. Through these interactions, I’ve witnessed firsthand the hope my story instills. However, this optimism is tempered by the lack of awareness, availability and financial hurdles many face in accessing this life-changing treatment. These exchanges with those full of hope but greatly in need, are what sparked the start of Be Still Foundation.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
First, it is hope, education and awareness about this innovative treatment that provides relief from debilitating tremors. Then providing key contacts within proximity of their location to understand if they would qualify for this procedure, as currently awareness is extremely low for this FDA approved procedure as it is only available in less than 70 health facilities in North America. Lastly, is the goal of providing the financial resources necessary for those qualified, vetted and in need.
What effect can your Advocacy have on an individual with Parkinson’s?
It is our mission to provide qualified candidates with an improved quality of life, by providing tremor relief that can be very painful, embarrassing and have a significant impact on daily activities. This procedure is not a panacea for Parkinson’s disease, but it does allow for patients like me to remove a significant symptomatic hurdle allowing for improved quality of life, reduction in pain and affords the opportunity to focus on other symptoms afflicting those with Parkinson’s disease.
What would you like to see as a future goal for your Advocacy?
Our five-year plan is to raise enough funding to award 1,000 Focused Ultrasound treatments to qualified patients in need in the USA by 2029. Awards will range from FULL CASH PAY, insurance deductible coverage, travel accommodations, wigs and any other costs associated with the procedure.
What events do you participate in?
As a newly formed foundation, we are just beginning to establish our own unique events and highly focused on raising funds. Additionally, we currently participate in lobbying efforts on Capitol Hill, and virtual / live speaking engagements within the Parkinson’s and Essential Tremor communities as an advocate.
How does this also assist the caregivers?
Tremor remediation allows for the recipient to be able to better care for themselves whether that’s getting dressed and ready for the day, eating and meal preparation and or any of the countless daily tasks that we take for granted that caregivers assume the responsibility.
How can someone get in touch? bobby@bestill.foundation
What is your website? www.bestill.foundation
How can others also become advocates for awareness?
Join Team Triumph on the website
What is Focused Ultrasound?
A: FUS (MRI-guided Focused Ultrasound) is a non-invasive, outpatient treatment designed for patients with essential tremor or tremor-dominant Parkinson’s disease who haven’t found relief through medication. This technique employs focused sound waves, directed by MRI, to penetrate the skin, muscle, fat, and bone, targeting specific areas deep within the brain. FUS is minimally invasive and utilizes high-intensity ultrasound beams to create an ablation in the brain’s motor region responsible for tremors. Unlike Deep Brain Stimulation (DBS) FUS does not require a scalp incision, skull burr hole, hardware implantation, or anesthesia. FUS can effectively manage disease symptoms and enhance the quality of life.
In your opinion, what is the key to effective advocacy?
Authenticity, empathy, and sharing experiences with others both good and bad. Offering hope. Articulating the experience that both patient and their caregivers go through.
How can we better fundraise to support a cure for Parkinson’s?
Continue to Utilize social media and other digital platforms to magnify the education and awareness for this rapidly growing disease. Secondly through the continued building of advocacy networks to leverage increase our overall audience… rising tide floats all boats!
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I am a frequent participant at my local Rock Steady Boxing classes, I have adopted the Mediterranean diet and doing my best to try to find areas in my life that I can reduce stress and anxiety.
Why should people who don’t have Parkinson’s care about this?
With Parkinson’s now being the fastest growing neurodegenerative disease and all signs point to no slowing down, they will know somebody afflicted by this disease.
Have you had any family members or relatives affected by Parkinson’s disease?
Just myself, I was diagnosed with young onset Parkinson’s at age 42
If you had one final statement or quote you could leave for the Parkinson’s community, what would be?
Recognize you’re not alone in this battle — join an exercise class for Parkinson’s, find a local support group for Parkinson’s, control what you can control and maintain hope!