6. Figuring Out I Have Parkinson’s Disease

It was the summer after I turned 60 and it seemed I was feeling the pangs of aging already. I was struggling to reach a dish on an upper-level shelf in my kitchen. I was sure I had a shoulder injury and started paying attention to the range of movement and strength of my right arm. Oh no! I realized I couldn’t wipe the kitchen counter very well and with further attention noticed that I was doing a lot of tasks with my left arm and hand. I am right-handed but hadn’t noticed that I was becoming ambidextrous. I couldn’t miss that I had a tremor when I would use my right arm to eat. A tremor that occurs when in motion is called an action tremor as opposed to a resting tremor which occurs when the body is still. This was confusing because resting tremors are more characteristic with PD.  I made an appointment with my primary care physician to discuss these issues. She referred me to a physical therapist and prescribed a medication for the tremor. The medication did help with the tremor quite a lot. The physical therapist did not find a rotator cuff injury but did think I had some adhesive capsulitis and gave me some exercises to do at home. But now that I was paying attention I realized there were other things going on. My husband noticed I wasn’t swinging my right arm when I walked. I noticed I was always the last one to finish eating a meal. By the time the third person asked if I had a back or neck injury because I turned my body very slowly, I knew something else was going on. 

I delved into the internet searching for an explanation to these symptoms. I repeatedly typed in my symptoms looking for a diagnosis. And then like a flashlight finally shined on that recess in my brain illuminating it so I could see, I knew.  I knew I had Parkinson’s Disease. I was sure. It was clear as could be and I wondered why it had taken me so long to figure it out. After all, I was a healthcare provider for 39 years at that point and was still working. I called as soon as I could to schedule an appointment with my PCP again. This time, I told her I believed I had Parkinson’s Disease and requested she refer me to a Movement Disorder Specialist or MDS.  She didn’t do much of an evaluation herself to verify my suspicion but agreed to make the referral.  It took three months to get a first-time appointment. Three months! That seemed like an eternity now that I knew and was desperate to get relief.

It was like putting a jigsaw puzzle together. At first the pieces were scattered in front of me. But as I started putting them together the picture got clearer, and the pieces started to fall into place more easily. Once the picture started taking shape more and more pieces became visible and popped into their spot. I had become aware that my sense of smell was not very good about 10 years earlier. When I looked it up on the internet at the time, I discovered that it was one of the first signs of PD. At the time, I completely dismissed it as I was sure that would not be my situation. I come from a lineage who has very lengthy longevity and that too was going to be my destination. But now, the picture was changing. This revelation explained why my facial expression looked different in the family Christmas pictures taken that year. It explained why I didn’t swing my arm when I walked or why I turned my body so slowly and why it took me longer than others to eat my food. By this time, I was noticing a tremor in my right leg especially when I was stressed. I had trouble sleeping and I struggled with depression at times. 

There are four main hallmarks of PD. They are stiffness, bradykinesia or slow body movement, tremor, and balance issues. Of those four I had three. But what I didn’t know was all the other facets of Parkinson’s Disease that can and often accompany the condition. Every person who has PD experiences it in their own unique way such that no two people have the same symptoms or presentation. Typically, a person is diagnosed with PD by giving a description of symptoms and by physical exam.  I did not have a blood test or any diagnostic exam. The MDS confirmed within minutes of seeing me the diagnosis. He looked at me and said “yes, you have Parkinson’s Disease. The good news is that no one dies from Parkinson’s Disease, they die with Parkinson’s Disease.”  Since I was still working, he wanted to be aggressive in treating me with medication and wrote a prescription which I filled on the way home. With the first dose I felt better than I had in a long time and within two months my symptoms had faded from sight. But it is a progressive disorder so over time the symptoms have become more pronounced.  I learned in my research that the best way to slow this progression is by engaging in regular exercise with the best result from vigorous exercise.  I was already a very physically active person and loved to hike but now I was on a mission to out hike this disease that threatened to keep me from moving.  I joined various hiking groups but when COVID came along and people were afraid to engage in group activities, I started my own hiking group and continued to hike throughout the pandemic.  The benefits have been very rewarding for many reasons.  Not only does it help with the primary motor symptoms but many of the nonmotor symptoms.  Many people like me before my diagnosis do not realize all the symptoms that can accompany PD.  Here’s a list of many of these lesser-known issues people with PD can experience.

1. Fatigue
2. Low Blood Pressure
3. Urge incontinence
4. Constipation
5. Restless legs
6. Skin and sweating problems
7. Sleep disorders
8. Eating, swallowing and saliva control
9. Weight loss
10. Speech and communication problems
11. Eye problems
12. Pain
13. Muscle cramps
14. Mouth and dental issues
15. Mild memory and thinking problems
16. Anxiety
17. Depresssion
18. Hallucinations and delusions

The Title picture of this post is from November 2011 – long before I knew I had PD.

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