Parkinson’s Awareness Month — with Linda K Olson
“Relentless optimism” is perhaps the best way to describe how our next guest approaches life. We had the pleasure of speaking with Linda K. Olsen, a radiologist, mother, triple amputee and Parkinson’s survivor. As she was telling us her story, we realized that Linda had distilled the essence of life with a rare clarity, and lived it to its fullest.
Linda tells us how she had an accident when she was 29, which led to the loss of both her legs and her right arm. After that point in her life, she started a family, continued her career and lived as close to normal as possible. And she continues that to this day, 42 years later. Today, she is committed to empowering Parkinson’s patients and families to live life as full as possible. Her experience gives her the unique ability to show people how to accept, adapt and innovate. Her message : “Get Out and Go”.
How did you cope with your accident?
After I was taken to the hospital, when my husband came to see me the first thing I told him was “I can understand if you don’t want to stick around”. He said “I didn’t marry your arms or your legs. If you can do this, I can do this”. He was a big support.
When you are lying in the hospital and you don’t have anything left except one arm, the only thing you have control over is your mind and attitude. People would often come to my room and they didn’t know what to say, and they would cry. And I realized you can’t spend the rest of your life with people going around with long faces. So my job during the hospital stay was to make people laugh and make them feel good.
You were diagnosed with Parkinson’s in 2015. Did your previous experience help you in dealing with the diagnosis?
Parkinson’s was a shock. The symptoms were not obvious. I still don’t get tremors. Because I was using artificial legs and a wheelchair, it was difficult to diagnose. The symptoms that helped diagnose Parkinson’s were micrographia (small handwriting) and anxiety. And to me anxiety was the hardest part of Parkinson’s in many ways. When I was physically disabled, I could work hard and make some difference. Parkinson’s is a lot more difficult. Essentially I dealt with it the same way as before, through humor.
After I was diagnosed I made a joke to my husband: “I have three wheelchairs, I’m not going to fall. I can’t get tremors on my right arm because I don’t have an arm on that side and I am not going to shuffle my feet because I have artificial legs so I guess we’ll just make it work.
My husband became a caregiver all over again. We had to sit down and work through it as a team.
Mental symptoms are usually harder to manage. How did you manage anxiety?
I’m trying to learn that right now. It’s a very steep learning curve. Things like yoga and exercise help. My anxiety is somewhat manageable if I stay active and if I do things like deep breathing. I’m also realizing that sometimes this anxiety is a result of my medicines.
You’ve had an active lifestyle. Does being generally active help?
Absolutely! Just going out on your porch helps. Sometimes in the afternoon I feel anxiety, and just going out to the porch, driveway or going around the block can make a huge difference. There are a few articles you can find that say fresh air helps with anxiety.
Your slogan is “Get out and go”. Could you elaborate on that?
When you find yourself in a place in life where you aren’t doing well, and you feel like you’ve lost control of your life, something as simple as opening a window and looking outside can be a beginning. Mentally, you’re looking outside yourself. You aren’t even outside the room, but you start to think that there is a world outside. Within the first week at the hospital after my accident, the nurses would put me and my husband into wheelchairs and take us outside in the afternoon. That was my first realization that just being outside is helpful, even if you can’t move and even if you have bandages all over you. It’s a distraction from thinking about what’s wrong with your body.
So every time you step out it helps. If you can walk, go someplace, if you can’t get in a wheelchair. Everyday when you do something that you didn’t do before, it feels like an adrenaline rush. I would say to myself “I can do this”. And it helped a lot. Every time that I said that, I could get at least 5 minutes of a surge. Fresh air and that sentence helped me make the next step, accomplish the next thing on my list. And that was the other thing we did. We made lists. Because when everything is taken away from you — your legs, your arms- and you have to start doing things differently, you need to prioritize what you’re doing. And every time you get to cross one more thing off that list, you get closer to being normal. And I was hell-bent on having a normal life. I wanted to have a job, I wanted to have family and I wanted to travel.
Every time I went out and did something, I would feel better. That kept me going. So that’s “Get out and go”.
What was your greatest insecurity?
Probably my biggest insecurity was my husband leaving me. He stuck around. If you stop concentrating on yourself and look at somebody and try to make them happy, and the other person is also doing the same thing, then you can pretty much get through anything in life.
Could you tell us more about your experience raising a family after your accident?
I got pregnant after the accident. Partly, it was one of those things that was an accident. It kept my mind moving in a different direction than myself being disabled. I had to learn to change diapers, I had to learn to do everything that was necessary, but with one hand. The kids never saw me as an able-bodied person. They grew up doing more than other kids their age, and they had a very active lifestyle so they didn’t miss much. I wrote a book recently, and the prologue has a section written by my daughter when she was younger. She writes about seeing pictures of me with my legs and mentions how she had never seen me like that. As they grew up they didn’t find it all that different. Sure I looked funny and sometimes they became protective of me, but it was not a very different childhood from normal. As they grew up, they realized what their parents had done and they were proud of us. The epilogue of my book is a piece written by my son as he was applying to medical school. It was his mission statement. This was, again, written before I had decided to write a book. In that statement, he described how he grew up in a house with a disabled mom, and how his dad had taught him that a person is more than their arms and legs. It was what is inside them, in the way they tackle life. It was clear that they grew up not knowing that life was any different for them. They probably realized it when they were 13 or 14, by which time they were doing more than other children their age. They grew up with a lot of our attitude of “I can do it”. They didn’t take things for granted and they believed that if they worked hard they could achieve whatever they wanted.
Could you tell us more about your book?
We have a more or less normal life. A normal, boring life despite the disability. The reason I wrote this book is to tell others with disabilities that they too could have a normal life. I wanted to show people that you can have children, you can have a job. I wanted to show them how we had done it. It shows you the parts of our life such as getting back to work, getting a job, driving, having a family, traveling. They are difficult, but they can be done.
What can be done to improve awareness about Parkinson’s?
I’d love to see more research put into what’s causing it. There is a lot of good work going on. Here in the US they have started to ban some of the pesticides that are linked to Parkinson’s. From what information we have about things that can cause Parkinson’s, we should start by addressing those factors. I’d also encourage people to volunteer for clinical trials.
I realize that I live in a part of the world blessed with many support groups. We need to turn our attention to places that don’t have these resources.
What would you say to someone newly diagnosed with Parkinson’s?
I would say that you still have a long life ahead of you. You are gonna have days that are going to be bad. You are gonna have to use the energy you have and do things that make you feel better, and things that make those around you feel better. And not to think about the bad stuff all the time. Find ways to help others. Think outside yourself. Learn something new. Go out there, win! Make it a competition with yourself.
Linda is courage personified. She makes things look simple, and radiates hope. Her message : Don’t dwell on what’s wrong, think outside yourself. Keep going, stay strong. Do have a look at her blog : https://lindakolson.com.