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January 8, 2020

PNI Finds Answers for Chasing the Cure Patient: Rori’s Story

by Zara Jethani

Rori used to be an elementary school teacher who loved working with kids. She lost the ability to walk and talk. With a diagnosis proving elusive, she and her husband Justin had to embark on a scavenger hunt. They reached out to “Chasing the Cure” for some answers and ended up at Pacific Neuroscience Institute.

Meet Rori

“Hi everyone, my name is Rori and I’m 51 years old. My story started about 6 years ago. I was a 1st grade teacher and was busy raising 2 kids with a wonderful husband. I was so happy and had everything going for me.

That all changed in December of 2013 when I began having difficulty getting up from the rug in my classroom. I fell at work a few times but thought I was just distracted. My balance eventually got so bad, I had to use a walker.

About 8 months later I began to notice changes in my voice. I was having difficulty getting words out. My voice became so bad that my students could no longer understand me, and in November 2014 I had to stop teaching. I was devastated. As of today, I can no longer walk or talk. I can’t even sit up on my own. I’m virtually trapped in a body that is seizing to move!

I can no longer speak at all! I can only communicate through text.

I have seen numerous medical doctors, neurologists, infectious disease doctors, functional chiropractors, biological dentists, osteopathic doctors, functional medicine doctors, naturopaths, homeopathic doctors and specialists in skeletal and muscular diseases etc.

Doctors and specialists have told me I have primary progressive MS, stiff person’s disease, mercury poisoning, lyme disease, HSP, PLS, but all the tests inevitably come back negative. No doctor can agree on what I have and no treatment has worked.

I feel like I’m failing my family, and everything around me is falling apart. I don’t know what to do at this point, but I’m not ready to give up! I desperately need answers, and would appreciate help or ideas from all. Thank you.”

Chasing the Cure finds PNI

Rori and Justin visited Pacific Neuroscience Institute in September 2019 to meet with movement disorders specialist Dr. Melita Petrossian. After a full battery of neurological tests, Dr. Petrossian delivered the news. Rori had Primary Lateral Sclerosis, a slow and progressively neurodegenerative disease with no cure at this time.

Finally with a diagnosis at hand, Rori feels relief and is able to move forward with Justin by her side. “I am focusing on being grateful for all I do have,” says Rori through a voice simulator. “I just want to have fun for the first time in six years.”

Watch Rori’s Chasing the Cure story

Pacific Movement Disorders Center

We are dedicated to the personalized care of patients with movement disorders such as Parkinson’s disease, essential tremor and dystonia combining the latest breakthroughs in research with a compassionate touch.

About Dr. Melita Petrossian

Dr. Melita Petrossian

Dr. Melita Petrossian is the Director of the Pacific Movement Disorders Center. As a specialized movement neurologist she cares for patients with Parkinson’s disease, essential tremor and cervical dystonia, as well as a wide range of other movement disorders.

Schedule an Appointment online or call 310-582-7433 to speak with a Movement Disorders specialist to discuss your specific situation.

About the Author

Zara Jethani, MS, MBA

Zara Jethani

is the marketing director at Pacific Neuroscience Institute. Her background is in molecular genetics research and healthcare marketing. In addition, she is a graphic designer with more than 20 years experience in the healthcare, education and entertainment industries.

Last updated: March 23rd, 2020