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Getting My Life Back: Gregg’s Story

By: Gregg Ley
September, 12 2017

I have lived my whole life in a small town of Quitman, Georgia. My wife, Cathy, and I have two grown children, Rachel and Thomas, and four grandchildren, Zack, Cody, Kinsey and Austin. I’m 58 years old. I make my living in electronics repair, fixing TVs, radios, stereos and other home electronics. My brother, Billy, is my partner in the business. Our grandfather started the radio repair business in the 1930’s when radios first came out and it’s been our family business ever since.

Essential tremor was getting in the way of my business, my family – my whole life.  It made my hands shake, and I couldn’t control it. Over the years, it got to the point where I couldn’t write or solder wires. I couldn’t even drink a glass of tea, my hands shook so bad. My right hand was the worst and that was a big problem because I’m right-handed. I tried learning how to do everything with my left hand for a while, but that didn’t go so well. When I was at work, I would fight and struggle to keep my hand steady, but then I got frustrated from trying to keep it steady and that would make it even worse.

Having essential tremor changed me. I’ve always been a people person, but because of my tremor, I felt like I couldn’t be me. I didn’t want to be around people because they were always asking me what’s wrong with my hands. Fighting this thing all day just left me exhausted, so I was no use to anybody when I got home from work. I used to be able to fix things around the house, but over time I couldn’t even do that anymore. It’s hard when you lose the ability to do what you’ve always done.

My wife, Cathy, is a beautician. Janie, one of her clients and our friend, read a book by John Grisham called The Tumor. The book talked about using something called “focused ultrasound” being used to treat different conditions, including essential tremor. Janie knew my hands shook — it’s a small town — so she told Cathy about it. And that’s how I first heard about focused ultrasound.

Cathy went online to learn more about focused ultrasound and found out about the Neuravive clinical trial that was already underway. We called or emailed all of the sites that were participating in the trial. Some of the sites were already full or said we lived too far away. I was on the waiting list at Brigham and Women’s Hospital in Boston when Amanda at Swedish Medical Center in Seattle called me. She helped get me into the clinical trial there, even though we lived far away. Everybody we talked to at Swedish treated me with respect and acted like they truly wanted to help me.

I was, literally, the very last patient to get into the focused ultrasound study. Dr. Ryder Gwinn and his team at Swedish Medical Center explained to me that I would be in an MRI machine during the procedure so they could watch what was happening to my brain. I had to be fully conscious, so they could talk to me and ask me to draw lines and spirals with my right hand after each treatment.

I was in that machine for four and half hours. After the treatment, my right hand was completely steady — as different as night and day. I couldn’t believe it, and neither could my wife. The tremor was gone.

I had to stay in Seattle for a one-week follow-up with Dr. Gwinn, so Cathy and I toured Seattle, rode the ferry, went to Bellingham, and just enjoyed my new life. I was able to sign a receipt — I know that sounds small, but it was huge for me. I hadn’t been able to do that in years.

The day after we flew back, I went back to work. Everyone said my whole attitude seems different, and it is. I feel like I can do things again. One of the first things I did was to fix our tractor that had been broken. I took it apart and put it back together. That was something that I hadn’t been able to do in years. Since having the Neuravive treatment, I feel like I’m back to my old self again.

CLICK HERE for Gregg and Cathy’s Video.