Declared the rock n’ roll chef by Rolling Stone magazine, Kerry Simon was used to making splashy press announcements and hosting glamorous VIP openings for his always-on-the-culinary-cutting-edge restaurants located in hot spots as far away as the Dominican Republic and as close as the several he owned right here in his home base of Las Vegas.

In December 2013 he would again make headlines but it was to be a much different kind of news story. Kerry would share with the world that he had been diagnosed with Multiple System Atrophy (MSA) – causing the renowned chef to experience a much different kind of fanfare.

Kerry would become the face of the little-known disease that is a more severe and aggressive form of Parkinson’s and affects only about four in 100,000 people. MSA is a very rare degenerative neurological disorder associated with nerve cells in specific areas of the brain. This cell degeneration causes problems with movement, balance, and other autonomic functions of the body such as bladder control and blood-pressure regulation. At this time, there is no cure for MSA and no known way to prevent the disease from getting worse. The goal of treatment is to control the symptoms.

And that’s where our story begins.

But not before I explain the parameters of my interview with Kerry which took place on February 10 at his home. Once an avid runner and biker well-known for living a healthy lifestyle, Kerry is now confined to a wheelchair and his speech so impaired and garbled that one of his caregivers, Jason Strange, a longtime friend who is not a nurse and does not have any medical training, did most of the talking regarding Kerry’s use of medicinal marijuana. One of Kerry’s business partners, Ari Farah, was also present during our February 10th interview to discuss some of the chef’s related investment interests in a dispensary.

I also spoke with Kerry’s movement specialist Peter Pinto on March 20, who offered his observations of Kerry’s physical condition. In addition, I interviewed Kerry’s nurse manager who wished to not be identified. Kerry’s physician at Lou Ruvo Brain Center for Brain Health/Cleveland Clinic, Dr. Ryan Walsh…

To read the rest of this story pick up the inaugural march edition of Elevate here