So, You Have Parkinson’s, Too – An Interview with Peggy Willocks
I want to welcome Peggy Willocks to Parkinson’s Journey! When I met Peggy, I was back visiting my blog partner and good friend, Judy Hensley. What a treat! A woman under little monster’s curse living her life as blessed! She was so positive, despite the long day she had that day and welcomed us into her home – and heart. Thank you Peggy for sharing a part of you with us, today.
Sherri –
So, you’ve got PD, too. Can you share a bit of how you were diagnosed, your first symptoms, or what led you to the doctor’s office?
Peggy –
The first sign came with a “twitch” in my left-hand ring finger. Then the whole hand had a slight tremor, but only at rest. It wasn’t a hard shake, just a slight tremor. I began to type the wrong letters with my left hand, and it was slower to move. (like I was waving in slow motion). But I still didn’t think much about it, until one evening our family was walking at this trail. My oldest daughter (who was a nursing student at the time) asked me, “Mom, you look like you’ve had a stroke. Your left arm doesn’t swing.”
Reality check; my arm wasn’t swinging. I had a friend who had been a librarian at our local high school who had been dx with PD for about 5 years. I began to “watch” my body more carefully and compared my movements with hers. I was, of course, referred by my doctor to see a neurologist. And I told him what I thought I had before he told me. That was 15 years ago. Even then I was in denial. I asked him if I could see a Movement Disorder Specialist, and he complied. I went to Emory in Atlanta, and she gave me the same news.
Sherri –
How has your view of having PD differed, if any, from when you were first diagnosed?
Peggy –
It’s like night and day. I was absolutely devastated when I was first dx’d. I had gone back to school after my 3 children were born, had taught only 7 years, and had landed the principal job just 3 years earlier. I broke down trying to keep the same course of life. I was hospitalized with what the neurologist called a “Parkinson’s crisis.” That was on a Saturday morning, and I never went back to school. It took a good year to control my symptoms (depression will kill you!) Then I started wanting to know everything about this thief.
Sherri –
What was your greatest fear then and what would you consider it to be today?
Peggy –
My greatest fear was that I would not get to see grandchildren. And if I lived that long, I feared I would never get to do fun things with them because of PD. I would picture myself in a wheelchair and even used to imagine my daughter forcing her children to “go talk to nana.”
But since I have learned that “Parkinson’s isn’t a DEATH sentence; it’s a LIFE sentence.” I have watched 3 strong women be torn down by advanced PD – I know what is to come. I guess that’s my greatest fear today. They went out of this world with broken bodies, but much greater spirits.
Sherri –
You have been involved in clinical studies. Can you talk about one and why you decided to do it? Would you do any more?
Peggy -
For two years after I went on disability, my symptoms were escalating at a rapid speed. We tried every combination of meds we could find. At a visit to see the MDS in Atlanta, she told me there was a new surgery being tested; it was deep brain stimulation. But she warned me that there was a long waiting list to be in that trial. I went home thinking I would never have a chance of getting in.
Then one morning I received a call from the research nurse at Emory. I got real excited! Then she explained that this was another study, one where cells would be implanted in my brain. I told her if it had any connection with aborted fetuses, I would not participate. She explained that this was retinal cells from a donor eye from an eye bank. Retinal cells produce dopamine. So she scheduled me a date to come.
There was a lot of testing with the screening. I was afraid that I wasn’t bad enough. But I qualified and became the second person in the world to have this surgery. It has been 8 years, and the endpoints were not met in Phase II (I was in Phase I), so the study was stopped. However, they are following the 6 people in Phase I for life.
Sherri –
What has been your biggest hurdle?
Peggy -
That would be making others understand about this disease. It is so hard for others (family included) to understand how one minute you can do about anything, and the next minute you’re like an invalid. (It’s even difficult for me to understand/)
Sherri –
What has been your greatest help with living with PD?
Peggy -
PWP [people with Parkinson’s] support by far! If you stay isolated, you go deeper into that hole of depression. Who would have thought in my simple search for answers to a debilitating disease, that I received my greatest blessings? And my faith also has sustained me. These hundreds of people that I know (or they know me) weren’t there just by chance; I am convinced it’s a God thing.
Sherri -
Have you found things more difficult to do? How do you handle that?
Peggy -
Yes. I am much more emotional; the slightest thing can set me into spin of anxiety. I have been on an antidepressant since my diagnosis. I try to avoid situations where I know how I may react. I keep saying to myself: “It’s not you; it’s the medication.”
I also am easily fatigued. Then when I should be sleeping, I have insomnia. It’s a vicious cycle.
Sherri –
Judy took me by the barn, on which you painted a beautiful mural. That has been since your diagnosis, correct? How did that come about and how long did it take?
Peggy -
Yes, I did that a couple of years ago. There is a family that lives in a trailer behind that barn. One day the lady living there told me, “I wish that barn wasn’t there. Every time I come on my front porch, I have to look at the back of that old barn.”
Don’t ask me why, but I felt like I had to paint that barn. I tried to do a little every morning. It was a hot summer. But after holding my arms up to paint for about 3 months, I realized something was wrong. I had surgery on my cervical spine (neck) twice for herniations. There’s a little more to finish the entire back of the barn – I don’t know if I’ll ever find the time. But it has made a lot of people smile (especially that lady in the trailer).
Sherri –
I know you are part of a support group. What would you say are the greatest benefits of being plugged into a group?
Peggy -
A support group is just that – another arm of support. And nothing makes you feel better than helping someone. People come looking for answers – what doctor should I see? What medicines should I take? How do you cope? It fuels my fire to help others – it’s a lifeline for many of those folks.
Sherri –
Rumor has it that you met/knew MJFox personally. How did that come about?
Peggy -
When I first went online, I connected with an online support group, People Living With Parkinson’s (PLWP). One of the co-founders lives about 2 hours from me, so I drove down and spent a day with her. She said she had met Michael J. Fox and we heard he was going to be at a meeting in Washington, DC. So I went with a group from PLWP to hear him talk at a forum sponsored by the Parkinson’s Action Network (PAN). Mike came in and sat at a table next to ours. He started talking about how he kept his PD hidden from the public for 7 years. Then he said he had learned so much about living with PD from some online friends, then he named the two co-founders of PLWP. I was so proud to be sitting at the same table with these new friends. Then he said, “I have learned a lot about this disease and how to cope by chatting and reading online . . . and one is pegleg.” My jaw dropped! I don’t think I heard another word that evening. Mike went to every table and talked with everyone that night. When he got to me we hugged, and I asked if he meant me. He smiled and said, “Yep. I don’t know too many pegleg’s.” I have seen him at many events after this. It’s just a casual wave and acknowledgement, but it derives home how careful you should be writing and talking online. You never know who is listening or reading.
Sherri –
What has been your greatest obstacle since having PD?
I have really neglected my family at times in my quest to try to find a cure or help cope with PD. Making them understand the connections between people who know what it’s like cannot be explained, and I wouldn’t wish this on anyone.
Sherri –
What has been the greatest blessing of having PD?
As I said earlier, it has been the people and doors that have opened. I would have never had the opportunities I have had if I didn’t have PD. So I guess I am saying having Parkinson’s has been my blessing – my chance to give back to those suffering.
Sherri –
You said you were a school principal. What was the hardest part of that job and what was the greatest joy?
Peggy –
The hardest part was keeping everybody happy. If it wasn’t the teachers complaining, it was the parents breathing down your neck. I had nothing to hide in the way I ran the school. Whatever problem came up, all you had to do to solve it was answer one question: Was it best for the students?
The greatest joy was making a difference in a child’s life. And I know I did because many, many have told me so – still today, 10 years later.
I know that to be true for a fact, having been in a restaurant for dinner with Peggy and having a former student come over and dote on her.
Sherri –
What do you do to stay active?
Peggy –
I like to swim –used to like biking, but can’t keep it balanced now. I am involved in advocacy work, local support group, church, and make presentations everywhere. I don’t have any spare time to just relax.
Sherri –
If you could thank one person in your life that has been a support/example for you during your journey with this disease, who would that be and why?
Peggy -
Pat Messimer had been diagnosed with Parkinson’s three years when we met. I had worked with her husband, also a principal. Pat could barely speak at first, and totally lost her voice the last year. She passed away only five years after diagnosis – they called it a Parkinson’s plus syndrome, Multiple System Atrophy. I befriended her because nobody understood her. Another friend with PD usually went with me to visit. Here were three ladies who were in their prime of life, yet they were suffering from a debilitating disease.
I also vicariously befriended a lady in a similar situation, Milly Kondracke. I met Mort and Milly the same night that Mike said he knew me. I told Milly how she reminded me of my friend in TN. We started an email relationship that lasted until she couldn’t sit at the computer any more. Then her husband, Mort and I continued to email. We continue to be friends today. Morton Kondracke is a Fox News contributor, the Executive Editor of Roll Call, a popular newspaper in Washington, DC, and author of the best-seller, Saving Milly.
Pat Messimer never wavered in her faith in God. She and Milly taught me that you can make the best of any situation if you have to – ANY situation. They both died fighting, in very different ways, but they went out with grace. They are my heroes/heroines.
Sherri –
Any other comments/areas of interest?
Peggy –
In 2003 I received an award through PAN for being a good advocate in my state, the Lewis Fishman Award. In 2005, I received the Milly Award, right after Milly died, for outstanding advocacy. I was the first of two PD patients to be on PAN’s board. I resigned just this past year. I worked with that organization nearly a decade. I still work with various orgs, mostly Parkinson’s Disease Foundation, located in New York City. I have worked with several pharmaceutical companies, also, and am a charter member of the Parkinson’s Pipeline Project, a grassroots group of patients who are working with a variety of people in speeding up the treatment approval process. Oh, in 1997 – one year before I had to go on disability, I was named TN Principal of the Year.
I want to thank Peggy for her time to respond to my interview questions. What an example of grace and beauty. I hope this was encouraging to all who read this and remember that PD is not a death sentence but a LIFE sentence. Live it as full as you are able… today.
