Originally from Pittsburgh, Chris Kokiko is a retired attorney who divides his time between volunteer work in his community and recreation. He’s an active guy who enjoys cycling, hiking with friends, playing golf, and going on walks with his wife.
In 2018, Chris lost 80 pounds. While this weight loss was a major success, Chris began to notice an inability to control the movement of his legs at night.
“I started to feel odd sensations in my legs at the beginning of the night. It felt like electricity was being shot through my legs. It was very unpleasant,” says Chris.
As a result of these sensations, Chris would get up from bed and walk downstairs. Here, he would walk circles around his family room.
“I would go downstairs at 2 a.m. and do laps because I needed to move my legs, but I was also so tired. I would lay down in my recliner, but the second I laid down, I would need to get back up and move,” says Chris.
The urge to move his legs was detrimental to Chris’s sleep and, ultimately, to his mental health.
“Loss of sleep leads to so many other issues. I developed mental health issues – When you don’t get proper sleep, everything in life has a negative swing to it. I just wasn’t enthusiastic about life like I had been before,” says Chris.
As Chris’s symptoms continued to worsen, he began to research, hoping to learn what was going on with him. That’s when he learned about restless legs syndrome (RLS), a condition characterized by the uncontrollable urge to move your legs at night.
“My first thought when I learned about RLS was I need to see a neurologist,” says Chris.
Upon seeing a local neurologist, Chris was prescribed a dopamine agonist medication intended to relieve his symptoms.
“For the first few weeks, I felt awesome. But soon, I needed more and more of the medicine to feel the same relief. Augmentation kicked in and my symptoms were getting worse,” says Chris.
Augmentation is the worsening of RLS symptoms due to the use of a dopamine agonist medication. Chris sought out resources for self-managing augmentation. Through his research, he discovered a community of RLS patients.
“My situation was getting worse, so I started looking for a second opinion. My next step was to go to a sleep center at a teaching hospital in Philadelphia,” says Chris.
At this facility, the augmentation was identified, and steps were taken to decrease Chris’s dopamine agonist medication.
“Around this time, I discovered that there were RLS treatment super centers. That’s when I found UPMC and Dr. Aggarwal,” says Chris.
Growing up outside of Pittsburgh, Chris knew UPMC and had family in the area. He booked an appointment with Avinash Aggarwal, MD, and traveled six hours from Philadelphia to UPMC.
“When I first met Dr. Aggarwal, she truly listened to me. She immediately understood what I was experiencing and made a plan to get me off the medication entirely,” says Chris.
In January 2024, Dr. Aggarwal’s plan was successful. Chris is now no longer taking a dopamine agonist for his RLS.
“Ever since I got off meds, really great things have started to happen. The biggest win has been that I no longer have daytime symptoms since augmentation has stopped,” says Chris. “Of course, this condition is a rollercoaster and I still have bad nights, but this is a major improvement.”
In addition to weaning off of medication, Dr. Aggarwal has helped Chris implement lifestyle changes to relieve his RLS symptoms.
“Since January, I have been keeping a journal to track my eating habits, alcohol and caffeine consumption, and exercise. I’ve learned a lot about what helps my symptoms. I now only having one cup of coffee a day and don’t eat chocolate after 2 p.m.,” says Chris. “RLS is so individual, so you have to find the habits that help you.”
Chris has since found an exercise routine that works for him which consists of cycling 20 to 25 miles, two to three times a week. On days he doesn’t ride, he is a part of a hiking club with a group of friends. The club walks three to four miles each hike.
In addition to lifestyle changes, Chris has found the support of the RLS patient community to be incredibly helpful.
“I learned about the RLS community through my research. I went to a restless legs syndrome conference in Baltimore to see Dr. Aggarwal present and was among hundreds of other people with RLS. There is such a large network of support,” says Chris.
Support plays an important role in Chris’s journey with RLS. From Dr. Aggarwal and his therapist to the RLS community to his family and friends, Chris surrounds himself with people who are educated about RLS and help him manage his condition.
“I am incredibly impressed with the care I receive at UPMC. It’s great to know there is such an experienced health care system backing up your care. Also, Dr. Aggarwal leads one of the top 12 RLS Quality Care Centers in the entire world. I’m confident I am receiving care from one of the top experts in this field,” says Chris.
With his condition continuing to improve, Chris enjoys volunteering as a big brother mentor in his community and delivering meals on wheels. He also loves attending sporting events and spending time with his wife and two sons.
“For anyone with RLS, I want to say that this condition is full of mysteries, and it’s not an easy journey. It can be discouraging to have consecutive bad nights. I’ve found that accepting and coping with the bad nights and relishing and celebrating the good nights is the only way to keep moving forward. Find the right care and the right support system,” says Chris.
Chris continues to follow up with Dr. Aggarwal through telemedicine visits every six months to monitor his condition.
