A Chronicle of My Parkinson's Journey So Far
I noticed my first symptoms when I went back to work six weeks after my second child, Bennett, was born. My left pinkie and ring fingers would not go where I wanted them to go on my keyboard. My left hamstring was always tight no matter how much I stretched, and my left arm wouldn't raise above my head. It was January 1997 and I was 32 years old. Eighteen months later, I was diagnosed with Parkinson's disease in July 1998 and began my love/hate relationship with levodopa (the primary medication used to treat PD). A friend calls it "oil for The Tin Man." At first, it was great! I could move again, which was wonderful and useful. But that came at a price.
In the years since then, a lot has happened:
- Early in 2000, three-year-old Bennett asked me why I was bobbing my head as I walked. It turned out that, in addition to the head-bobbing, I had also been making strange movements with my left hand. These involuntary, writhing movements, known as dyskinesia, were caused by the levodopa medication that I needed in order to move. But this was only the beginning of my dyskinesias. They rapidly got to the point that my husband, Paul, confessed that sometimes he couldn't look at me when I was talking to him because he felt like he was going to get motion sickness!
- In Spring 2004, I had to leave my job as co-director of the Food and Health Program at the Institute for Agriculture and Trade Policy. I was taking levodopa every 90 minutes of my waking hours; my dyskinesia was constant -- except when I couldn't move at all. I applied for disability and was approved. I was 40. When I left my job at IATP, I had no idea what I was going to do. It was then that I received a large, lumpy envelope in the mail. It was from a publisher; they wanted to know if I would write a book for newly-diagnosed Parkinson's patients for them. Having nothing better to do, I said, "Sure."
- Turns out writing a book and getting it into the printer in 12 months is very stressful, which then makes PD symptoms -- and dyskinesia -- much worse. Literally one week after I had submitted The First Year: Parkinson's Disease: An Essential Guide for the Newly-Diagnosed to the publisher, I told my neurologist that I was finally ready to have the deep brain stimulation (DBS) surgery that he'd been recommending for three years.
- In January, 2006, I underwent bilateral DBS surgery at the Cleveland Clinic. The surgeon placed two electrodes, each the diameter of a piece of spaghetti, in a jelly bean-sized part of my brain called the subthalamic nucleus. I also had two neurotransmitter batteries, one on each side, placed under the skin of my chest and anchored to my ribcage a couple of inches below my collarbone. The DBS helped to significantly reduce my dyskinesia and muscle rigidity for several years, although my symptoms of halting speech and slowed movements continued to progress.
- In Spring 2009, I published Life With A Battery-Operated Brain: A Patients' Guide to Deep-Brain Stimulation Surgery for Parkinson's Disease. It is much easier to write a book without a deadline!
- Fall 2010: As I prepared to attend the second World Parkinson's Congress in Glasgow, Scotland, I began experiencing tingling sensations in my right hand and foot, along with brief "electric shocks." Tests confirmed that I had an "open circuit" on the left side. I traveled solo to Glasgow. It was difficult but I made it back unscathed. I underwent 4 surgeries in a 4-month period: #1 was to determine whether the open circuit was in the extension wire (which runs under the skin from behind my ear to the battery on the left side of my chest) or in the lead that goes into my brain); #2 was to remove the broken lead and place a new one in my brain; #3 was to replace the left battery in my chest, which had run low; and #4 was to replace the right battery, which no one had thought to check when we noticed the other one was low!
- By 2015, I was having some dyskinesia and a lot of dystonia on the left side of my body. Dystonia is abnormal tone in the muscles - mine were always stiff) My neck was particularly affected. It was very painful, and my palliative care doctor prescribed low doses of the opioid Dilaudid to help with the pain. I spoke with my neurologist and two neurosurgeons at the U of M. They recommended placinging a lead placed in my right Globus pallidus internus (GPi) to reduce the dyskinesia and dystonia. I decided that if this "operation third rail," surgery could relieve even a fraction of my neck pain, the surgery would be worth it. So, in mid-June, I had brain surgery to put a lead into the GPi, and another surgery to replace the smaller, single-lead battery with a larger one that would power both right-brain leads.
- The "third rail" did the job on the dystonia and dyskinesia. I was able to stop taking Dilaudid. However, whether because of the surgery or disease progression, people were suddenly asking me to speak louder or to repeat myself. I noticed that my speech was slower. The effects on my voice have definitely been the most difficult aspect of PD for me. So much of my identity has been associated with public speaking, first, on the environment, and later, on Parkinson's issues!
- 2018 was the Year of the UTIs. Over the course of that year, I had 9 urinary tract infections. Three of them required hospitalization and intravenous antibiotics because they were caused by "bugs" resistant to oral medications.
- Also that year, I noticed that I had begun having dystonia on the right side of my body, again, especially in my neck. "Deja vu, all over again!" I began undergoing the checklist of testing and evaluation to see if I would qualify for another DBS surgery: 1) the "response to levodopa" test (which entailed going in to the clinic “off meds” for at least 12 hours, turning off DBS, doing the neuro exam "party tricks", taking meds, more party tricks, turning DBS back on, and doing one last set of party tricks); 2) the MRI, to make sure I didn't have any growths or other conditions that could be causing my symptoms; and 3) the neuropsych testing and interview (2-3 hours of memory, cognitive and decision making tests, plus a chat with a neuropsychologist, to prove that I still had enough of my marbles left and that I had a large, strong support system of folks who could help me recover).
- January 2019, 13 years after my initial DBS surgery, I had my 4th lead installed. I now had the full set of leads offered by Medtronic. I think I deserve a free set of steak knives or free battery changes for life as a reward for my brand loyalty. Thus far, Medtronic has remained unconvinced. The surgery didn't help as much as I'd hoped. However, I was able to walk down the "aisle" with Alex, Paul and Bennett and Alex's wedding on June 21, 2019. That made it all worth it.
- So now it's 2021, and my speech is very slow, soft, and sometimes slurred. I've been doing voice exercises 3-5 days/week but it's an uphill battle. My movements are pretty slow. I use a walker (complete with tennis balls!) for balance when moving around the house. I use a 4-wheeled model when out and about. I have central sleep apnea, which essentially means that sometimes my brain forgets to send a message to my lungs to tell them to breathe. This means that I sleep wearing a mask that is attached to a machine that monitors my breathing. If I don't breathe, the machine will force air (and three liters of oxygen/hour) into my nose and lungs. I take 25 pills/day that are directly or indirectly related to PD.
Through all of this, I have been very blessed. My husband Paul has been by my side, despite the risks to his physical and mental health from being my caregiver. I have a home health aide who is with me every weekday. I have two loving adult sons, a wonderful daughter-in-law, and numerous aunts, uncles, cousins and friends who make up the rest of my support system.
Many of the approximately 20,000 Minnesotans living with Parkinson's are not so blessed. And while there have been some new medications and treatments released in the 23 years since I was first diagnosed, levodopa -- approved in 1970 by the U.S. Food and Drug Administration -- is still the "gold standard" for medications. The search for a definitive diagnostic test and a cure continues.
That is why I am participating in Moving Day Twin Cities, benefiting the Parkinson's Foundation.
The event will be a fun-filled, family-friendly morning for all ages and abilities. We will be able to enjoy a variety of movement activities like yoga, dance, Pilates, Tai Chi, boxing, stretching and much more and celebrate the importance of movement in our lives. Note that activities may be modified based on Covid-19 restrictions.
Please consider being a part of my team or sponsoring me, and I encourage you to get your friends, family and coworkers involved. I know that the coronavirus has had a tremendous economic impact on the country, and that there are many other causes worthy of your support. Donations of any size are appreciated. If you are unable to contribute, please give us your wishes for good weather and safe conditions for the event. I expect that this will be my last Moving Day, because participating takes so much out of me.
Thank you for helping me reach my fundraising goal to support the vital work of the Parkinson's Foundation.
Why Move for Moving Day?
Did you know that someone is diagnosed with Parkinson’s disease every 9 minutes in the United States? No one should have to face Parkinson’s alone. That is why the Parkinson's Foundation provides a community of support to give people the resources and help they need to live well with Parkinson’s.
Support our mission to help every person diagnosed with Parkinson's live their best possible life now. Your gift will help us fund better research, better treatment and better lives.