No Time For Parkinson’s Disease
I am 62 and feel 42 on my good days. That’s my brain speaking. Not my body. Not now. I was diagnosed with Parkinson’s disease about 4 months ago. I knew I had PD long before it was diagnosed. However, I had work to do and simply could not have Parkinson’s disease until I was ready. On my terms. Let me explain…..
I was raised poor but had a mother who had more courage and stamina than anyone I have ever met. She taught me that honesty, compassion, and old fashioned hard work would take me far in this world. She encouraged me to always be the best I could be and to always conduct myself as I wanted to be seen because someone would always be watching me. She was right. I didn’t always have my mother beside me but I had her in my heart.
Best in my field
I am a nurse practitioner for approximately 30 years now. I have seen and diagnosed many health conditions when others did not. It seemed that my average patient had seen approximately 3-5 practitioners/doctors before seeing me and my practice was built on word of mouth referrals. I loved my work. I was in family medicine where you get to do it all and I did.
I started my career working in a rural health area where I was the only practitioner available for a 65 mile radius. Kid fall out of the tree and leg split open? Take them to see Dr Judy. Running into the clinic with blood all down the front of his shirt and holding his eye, I was thinking the worst. But it was a piece of cake. That farm machinery missed that young man’s eye and he had a gaping gash in his eyebrow which I promptly numbed up and sutured with hardly a visible scar. Mom comes into the lobby screaming and holding a baby about 8-9 months old who was also screaming. Baby was in the high chair and mom took the pot pie out of the oven placing it on the tray in front of the baby thinking the baby would not bother it until she could get it cooled down enough to eat. New mother. Not thinking. Severe burns down the baby’s chest and torso. Got her cleaned up and relieved her pain so I could work on her. I came in 7 days a week for months and changed that baby’s dressings while debriding her wounds praying she would not scar. Gave her antibiotics and taught mom how to care for her baby. Never got infected AND she didn’t scar.
Oh, how I loved what I did. It wasn’t work for me. People needed me and I had the skill to help them. They were grateful. I committed myself to them. I loved the fast pace and fast thinking. I knew I was one of the best in my field and I stayed up to date on treatments/techniques learning everything I could to be the best I could be.
Beginning to notice symptoms
Fast forward 30 years. One day I got up feeling stiff and slow. Got up, went to work. I had my lab tech to draw a battery of labs. Looked great. Must be some kind of bug or just overworked. (My day started at 9 with appointments every 15 minutes until 6 pm. Monday through Friday. I skipped lunch so I could get my patients out without them waiting). I saw patients, had phone consults with other practitioners, reviewed labs, X-rays, CT scans, and MRIs. My receptionist was responsible for reviewing with me all that occurred in my office while I was seeing patients so we could address issues and potential issues. Patient calls, med refills, people wanting to be seen that day, drug reps. It went on and on. I was also now lecturing Wednesday afternoons for one of the largest pharmaceutical companies in the U.S. People were depending on me! I had worked so hard to gain the respect of my colleagues. I had an awesome practice that many others wished they’d had.
For about 2 weeks now, I started noticing it was taking me longer to get ready to go to work. I felt tired. One day I noticed a tremor in my left hand. Must be too much coffee. Feeling lightheaded. My blood sugar must be low. The girls in my office made sure I had what I needed. Crackers, water. Whatever.
Then I started these sweating episodes. Like my body could not regulate my temperature. Weird. Must be menopause.
Get the picture? I could make an excuse for every symptom I had. I fell in the parking lot. I must be exhausted. I was always an overachiever. Never failed at anything. Independent, self confident. I could do anything I set my mind to do.
I lived with and dealt with one symptom after another pushing myself to do what needed to be done for 4 years. I actually started taking better care of myself by taking a 15 minute lunch. Ha, ha. And my staff started making sure I left the office when they did because I would stay until 8-9pm getting caught up. It helped or seemed to. For a while.
Cutting back my schedule
One day I got up, got ready, began walking to my car and fell. I could not blame it on tripping. Shortly thereafter, I fell one evening after work breaking 2 toes. One toe was shattered into 7 pieces requiring surgery. But the fatigue? It was bad. I started having to really push myself to get out of bed when I was used to jumping up, drinking coffee, and hitting the shower. Not now. I got up at 5 to get to the office by 8:30.
My staff started noticing the slowness of movement and thought I was exhausted. I didn’t have a tremor except when my blood sugar was low. Parkinson’s disease didn’t even cross my mind.
Then one Saturday I had just moved into my new home and I was moving boxes. What is that jerky feeling I am having in my arms as I lifted the box? I sat the box down and stood next to the kitchen counter and did the “ratcheting test” for PD. Sure enough. It was there. But I decided to ignore it.
I kept working, but I had to cut my schedule back. I had over 10,000 patients. That’s right. 10,000 patients for one health care provider. I had a busy practice.
One day, I simply could not go in to work. I could barely move to walk to the bathroom and to the kitchen. I was single and incredibly independent. So I made an appointment with a neurologist in Nashville, Tn which was an hour away. Certainly not in my home town where people would know I was having “issues.”
I knew I had Parkinson's
It took 3 visits to diagnose the PD because I wanted him to find it. I was not going to volunteer my possible diagnosis. Surely it could be something else. After EMGs, EEGs, MRIs of the brain which were all negative, he was scratching his head. Finally I said “I have noticed the fatigue and stiffness in my muscles. I am so slow now. Some days I feel I can barely walk. Sometimes I fall. For no reason. I have had difficulty swallowing for the last few months. Then, I noticed the ratcheting in my biceps”. He said “you suspected this all along, didn’t you?” I answered “yes, but I just didn’t have time for it”. Who wants that diagnosis? I had work to do and a practice waiting on me that was full of patients depending on me.
He seemed optimistic and told me we could deal with it then started me on Sinemet. The next month I went back and I was doing so much better. When I took my meds, I was the old Judy. Fast talker, fast moving and full of life.
However that didn’t last long. About 2 months. The falling is now every single week. One day I fell 4 times. Taking my dogs out in the back yard is dangerous because I can’t balance myself on the grass.
I am struggling. One day I went to see my Dr. and broke down crying. Just sobbing. I am always positive and see the silver lining in the darkest of clouds.
But we are talking about me now! This is not me consoling and counseling a patient. It is me! My life! I have a business to run. I have a house to take care of now. I have a fiancé who has been begging me to marry him for 3 years. I told him I just wasn’t ready. Too busy. But the truth was that I knew I had Parkinson’s and was not going to lay that on someone I loved. He moved in when he saw me struggling with housework and working. He insisted. But marrying him was something else.
Telling my fiancé
But I knew I had to tell him. I came home after having a mental breakdown in the neurologist’s office. Got ready for bed. We ate dinner and then I told him I had Parkinson’s disease. You would have thought I had told him I had high blood pressure. He didn’t care. He loved me and wanted to be there for me. No matter what.
So we got married April 8, 2021 in Nashville, Tn. I have never seen him so excited. It feels good to know that I have him there for me. But I still worry about how severe my disease will become. I worry about being a burden to him.
I have been reading everything I can find on Parkinson’s. Especially how others deal with the day to day living. I retired earlier this year so I could focus on my health and my new marriage.
I have decided that I am going to treat this just as I have treated my patients. With knowledge and a positive attitude. I just read about a book entitled “The Parkinson’s Protocol.” Do any of you have knowledge about this book? It’s written by a man who has Parkinson’s. He reveals what he has learned and how he has dealt with it. He discusses different therapies based on stopping the progression of the disease based on what we do know about why we experience the symptoms of PD.
I am a fighter. I am an overachiever. I don’t accept failure and I won’t accept that PD is going to take me down. No way. I have come too far. I fought so hard to overcome obstacles my entire life and this is no different. It might be a big bump, but it’s still a bump in the road. Besides, it’s another reason for a good fight. Don’t we all like to see a good fight? And even root for the underdog? Like I have told many people, don’t underestimate me. That would be a big mistake.
Thank you for reading my about my experience with PD.
Has it been difficult for you or a loved one to maintain hobbies?