The John Paul Jr. Wellness Center
Currently seeking a major corporate sponsor to turn this vision into a reality.
The John Paul Jr. Wellness Center will be a collective of services and information created to provide centralized access and support for patients suffering from devastating neurological diseases. This center will allow others to benefit from all that was learned during John Paul Jr.'s battled with Huntington's disease.
John was an exceptional human being. he embodied what it meant to care and to give, unconditionally. During the toughest times of his disease, John continued to ask people how they were doing and how they were feeling and listened intently to their stories. The center will continue John's legacy of caring and giving.
What it will offer:
- Holistic Resources such as:
- Acupuncture, Pilates, Yoga and Nutrition;
- Emotional Support
- Respite Care
- Community Resources
Why Do We Need This Center?
Unless you have been in the shoes of a person who has just been diagnosed with Huntington’s Disease (HD) or that of their loved ones, it is unimaginable to fathom the powerful plethora of emotions that cascade throughout your entire being at that moment in time. Even if you were well aware you were at risk, having that official validation and knowing what lies ahead is quite surreal.
John shared that he pretty much knew he had HD, when the telemetry on the race car showed that he lifted, briefly, (under braking), and he knew he gave no such command to his foot. Darlene's sister, Dr. Dyna Shirasaki is a PhD Biochemist, graduate of UCLA. She was a student at the time Darlene mentioned the possibility of John inheriting Huntington's Disease. Dyna began to learn more about this devastating and cruel disease and then focused her studies to help find a cure. She referred John to UCLA's Huntington's Disease Center of Excellence where he met Susan Perlman, M.D., Clinical Professor of Neurology; Director, UCLA Huntington’s Disease Center of UCLA. This became an epic union of two determined souls working diligently together to put an end to this merciless killer as they embarked upon their 20 year journey together.
John always mentioned how lucky he was to have the combination of Dr. Perlman and his network of holistic resources/healers. It slowed down the progression of the disease and kept him, as John referred to it as an extended "holding pattern."
Not everyone is fortunate enough to have a Dr. Perlman nor do two HD patients experience the exact same challenges. When battling a neurodegenerative disease, there are countless obstacles that emerge. You really don’t know about them, until you approach that bridge and realize you need to cross it. You quickly discover you are about to cross uncharted waters and this is where access to resources are priceless.
A Light at the End of the Tunnel
"Challenging" is an understatement when it comes to dealing with all things HD. As the disease progresses, unexpected obstacles emerge and trying to navigate the "where to go" and "what to do" was a constant, overwhelming, seek & find learning process. John expressed continuous gratitude that he had a solid team working on his behalf sharing resources, ideas, and discovering new information that would lead to a solution. That resource helped to extend the quality of John’s life. The Wellness Center will provide hope, as a resource - a bright light at what often can seem like a very dark tunnel during the journey of Huntington's Disease.
The John Paul Jr. Wellness Center will work very closely with UCLA Neurology and offer many holistic alternatives as well as being a resource of information for those struggling with HD or those trying to care for someone with HD.
We just want to make it a little easier for people struggling with neurodegenerative diseases and do all we can to enhance their quality of life. Sharing all that was learned during John's journey will help others. That was something very important to John, and to all of us. Doing all we can as we await each and every day with bated breath for the cure of Huntington's Disease.