Tracy Scott, Psy.D., is the author of the book “Doctor to Patient: Living with Stiff Person Syndrome,” as well as a lecturer. Scott earned his doctorate in clinical psychology from the Alfred Adler Institute of Chicago (now Adler University). He completed his internship in clinical psychology at the Minirth-Meier Clinic in Wheaton, Illinois, and also completed a two-year postdoctoral fellowship in clinical neuropsychology at Schwab Rehabilitation Hospital in Chicago. This conversation has been edited and condensed for clarity.
Amews: Please tell us about your background.
I have a doctorate degree in clinical psychology. I specialized in clinical neuropsychology and had a two-year postdoctoral fellowship in that area at that time, when that particular aspect of the field of psychology was relatively new. From there, I completed my training but found my place in the area of teaching seminars because one of the things that I realized, as I was going through my training, [was] that I was helping people after they had fallen into a crisis situation. I wanted to go upriver and help them before they fell in and I found that to be a more significant space for me. I also had an opportunity to have a kind of mass impact with my time on the radio [and presenting] seminars, as opposed to a one-on-one counseling session. That really became my cup of tea. In terms of teaching, my time spent at Loyola University in Chicago was a great experience.
AmNews: Please talk to us about your diagnosis.
In 2002, somewhere in that timeframe, I started experiencing kind of mini spasms. They would come on and then they would leave. It kind of caught my attention, but being a former athlete. I kind of [said to myself], “Well, maybe I’m doing too much, maybe I’m exhausted or overworking myself, and I need to just take it easy and pay attention to this.” However, over time, they continued to escalate, not only in terms of frequency but also in terms of intensity. At that point, I went to my doctor and went through the process of bloodwork. My bloodwork came back and everything was pristine — it was really good. I said, “Let me try to adjust some things in terms of my diet,” so I started making changes in my diet, but the spasms persisted.
One day, I went in for my appointment and the neurologist said, “Dr. Scott, have you ever heard of a disease called Stiff Person Syndrome? and I said “No, I haven’t.” He said, “I want you to go home. I want you to look it up, and then you and I need to talk.” I left his office and went straight down to my car and looked that up … After over a decade and a half of searching, trying to figure out what was going on, I had my answer— but now the question was what to do about it.
AmNews: What did you do once you had the diagnosis?
Being a professor, I was used to being in control of my environment and of the situation. If I didn’t have the answers, I kind of knew how to steer people into a direction to find answers or to get help or resources. I had to learn how to gain some sense of control and some sense of dignity, and realize that my life still had meaning despite the fact that I was now faced with being a forever patient.
AnNews: What does your life look like now in terms of medical visits and health care?
My life now requires excessive preparation before leaving my home. I make sure that I have my medications with me. I have a rescue bag that I keep with me. I’m always cognizant of the emergency rooms — where they’re located in the area, just in case spasms happen and they don’t dissipate. The routines that I have demand a significant effort in adaptation — I’ve had to adapt my lifestyle and I also had to be aware that it’s not only the fact that I am a patient living with Stiff Person Syndrome, but that it is an invisible disease; unless you see the spasms or the stiffness, you would never know that I have it. That brings a unique challenge of encouraging people to understand just in terms of how it has affected my lifestyle and all of those around me.
AmNews: What are some final facts you’d like people to know about Stiff Person Syndrome and the challenges you have had to overcome?
The important thing is the relationship that you have with your medical or healthcare professional — to solidify that relationship to make sure that you stay in constant contact with them and that you follow their advice. I’m in constant contact with my primary care doctor. I do nothing from a healthcare perspective without checking in with him and I’m very fortunate that I have what’s called a good doctor because not only is he compatible, but he’s very sensitive to my chronic illness.
Second, I think it’s important to realize that despite the fact of what you may be going through, your life still has meaning — you need hope because Stiff Person Syndrome is so painful. When spasms take hold, it’s as if someone is taking my body and putting it in a vise grip, turning and ratcheting the grip and not letting go, so you do need perseverance. It’s an attitude thing that starts with your mind, it starts with your purpose, and that despite what you’re facing, you don’t give up. If you don’t have a physician [whom] you have that relationship with, seek that out because that’s important. It’s very difficult to address living with Stiff Person Syndrome without that relationship with your doctor.
The other thing that I think is really important is in terms of nutrition. My diet — I make sure that I do everything. There’s a reliance upon my healthcare professional, but ultimately, I’m responsible for my health care, so I’m doing everything that I can in terms of my diet and making sure that I get some exercise each day. I may not be able to exercise every day to the same degree, but I can always do something, and I listen to my body. If I need to relax or I need to not attend an event meeting, I do it.
The last thing that’s really important is that ideally, you have relationships with people who are empathetic and compassionate, because again, one of the biggest challenges of a chronic illness is that it is lifelong, it’s enduring, and you need support.
Thank you for sharing Dr. Tracy Scott’s powerful journey with Stiff Person Syndrome. His insights on resilience, the importance of a supportive healthcare relationship, and maintaining hope amidst chronic illness are truly inspiring. It’s a poignant reminder of the strength required to navigate life’s challenges and the crucial role empathy plays in our communities.