Lisa DeFreece was a teacher before becoming a Parkinson’s patient and activist.
My primary care doctor noticed a few things that I hadn’t even noticed in 2004, but I wasn’t diagnosed until 2006. He noticed a twitch in my finger during our regular six month or annual check up and he said, “Well, we’ll just kind of monitor that”. The next year I went back in for my one year and I complained about being very fatigued. I was noticing the tremors moving from my fingers to my arms and legs. He said, “OK it’s time to go to a neurologist, this is more than just what I can deal with”. I was sent to a neurologist, and he determined that I was in the early stages of Parkinson’s.
In line with our James Bond theme at KiMe, Lisa has been assigned agent status 001: Patient for her determination to find a cure for Parkinson’s. There are seven total “00” status agents in this interview series.
They asked if I ever had a head injury and I had said no. They asked if I had any family history and I said no. I don’t know what caused it because I don’t have any underlying symptoms or reasons that I would have it.
I was shown a sheet of paper with all the different Parkinson’s medicines and was told by that neurologist that I would probably end up trying every one of them at some point. The list of medicines is very long – there are probably 30 or 40 different types I’ve tried. I’m currently on Rytary which has been the most effective one for the last five or six years. It’s made a huge difference. They had to tweak the dosage each day, but I take twelve right now. It’s by far been the biggest helper for me to function.
Unfortunately, I wasn’t able to return to teaching full-time. I couldn’t teach because of the fatigue and the pain and just a lot of the symptoms I was initially having. It affects your speech, so I sometimes slur or stutter or have a hard time trying to figure out what word I want to use. My articulation is different. That makes it hard for me to teach. It has affected my handwriting and being able to stand up right. The tremors are difficult to deal with when you’re trying to teach a long day. Being off balance leads to other situations that are difficult to deal with.
I’ve done some part-time things to stay active but Parkinson’s has really developed into other issues with my back, health wise it’s caused a lot of problems.
I started doing the Rock Steady Boxing with Zach Guza at Black Dog Fitness and it’s been quite a game changer. A year and a half ago I had difficulty being active at all, so fatigued and probably a little depressed because I wasn’t being active. It really made a huge difference just going in there and hitting that boxing bag. Zach is really good about incorporating a lot of cardio type things as well as cognitive. He makes it fun, and well-rounded and not just boxing and hitting a bag. He puts a lot of thought into it and a lot of work into putting us through the ringer and making us push ourselves to do what we can. Everybody works at their own pace and it’s made a huge difference.
I was lucky enough to meet Steve Hodges a few years ago from a neighbor who worked with him. We hit it off right away and he asked me to get involved. I started out by just going to a couple of their fundraisers. I decided that KiMe was something I needed to be involved in, not just passively and asking others to help, but physically and mentally get myself involved and it’s been a wonderful experience. It’s been a great way to meet new people and be involved with something that I’m passionate about.
I don’t think that a lot of people know what’s involved in having Parkinson’s or for the caregiver of a person with Parkinson’s. I’ve talked about it and educated people as much as I can. They may have heard of it because of Michael J. Fox or Muhammad Ali who had it before his passing, but I don’t think people really understand inner workings. It is kind of like the invisible disease because even though you have a tremor, other than that sometimes you can look completely like just the average person. People don’t notice that there’s anything wrong with you and there’s so much that we go through.
I think a lot of Parkinson’s patients are self-conscious of their movements. They’re involuntary movements and sometimes the medications cause some of those side effects. You tend to shy away from being around people. Definitely don’t give up the social activities. Be active socially with your friends and your family because they are there to help you get through all those obstacles. Support groups are great because you can get your questions answered and meet new people. That’s probably. my number one piece of advice—stay connected! Do not isolate yourself. It’s hard to ask for help and you do ask, but know people are willing to do that for you.
Your good friends and family will always be there for you. Thank you to my husband, Jim DeFreece, for always being there for me and supporting me.
About Faith McGhee
After 17-year-old Faith McGhee graduated early from Oak Ridge High School in 2022, she sought out a new assignment—researching Parkinson’s disease. It was at a 2022 KiMe Fund Volunteer meeting the idea developed. Over the next few months McGhee made time to interview doctors, caregivers and patients, chronicling their stories of the neurological disorder that steals a person’s ability to move, eat and speak. What sparked her curiosity and concern? Faith’s grandfather has suffered from Parkinson’s her whole life. “The word I would use to describe him—it’s just strong,” she said. “He’s persevered through everything and he’s always been there for me and I try to do the same for him now.” Faith intends for these interviews to be a source of information, education and inspiration.
