Parkinson's Hijacked Our Plans

Shortly after my Parkinson’s diagnosis, I heard the initial stage of the disease called the honeymoon phase. I dismissed it as a simple referral to the time period immediately following diagnosis much like the honeymoon that follows a wedding. I did not have time or interest to think more about it because I needed to manage my symptoms, doctor appointments, new medications, and their side effects.

Kidnapped by an incurable disease

Within a few months, I felt uncomfortable with the use of “honeymoon” in any dialogue about Parkinson’s disease (PD). I associate a honeymoon with the beginning of a relationship when everything is new and exciting. I have heard “honeymoon phase” used about a new job or a new car. That has never bothered me but for some reason the more I hear “honeymoon” and “Parkinson’s” in the same sentence, the more I cringe.

I definitely did not marry Parkinson’s disease or enter into any kind of loving covenant with it. There was no honeymoon. In fact, I would say Parkinson’s kidnapped me. The wonderful retirement plans my husband and I held dear had been hijacked. I did not like that one bit.

I grew curious about what parallels, if any, existed between living with an incurable disease and being kidnapped. Weird, perhaps, but let me blame these thoughts on lack of dopamine and go from there.

The stress of a diagnosis

Speaking for myself and having heard this from others with Parkinson’s, there are many stress reactions to a Parkinson’s diagnosis. I thought I had PD before seeing a neurologist, so my denial was fleeting but the hope that he was wrong did cross my mind.

Many of my initial thoughts were ugly and featured images of what I had seen when persons were in an end-stage. I was confused regarding “how” I had gotten here and realized quickly that wondering “why” just made my head hurt.

I had many questions while my emotions recycled through shock, numbness, anxiety, guilt, and anger until the last emotion standing was guilt. These emotions, and more, are identified by persons who are held against their will and then released.¹

Meeting people with Parkinson's

My initial questions focused on work. Did anyone notice I kept putting my affected hand in my pocket or behind my back? Should I tell my co-workers or boss? If so, when? Next, I questioned what medications to take and when to start them. I had to rely on my doctor’s expertise and found that a little unnerving. I wanted to know someone else with PD to hear what they were doing.

I felt isolated until a colleague who had heard I had PD met with me to tell me he had it, too. I can only describe it as amazing to know someone else with PD. I worked to learn as much as possible in order to live as well as possible.

Did that mean I had to accept Parkinson’s? I have heard folks say they accepted their Parkinson’s and with that came peace and/or resignation. It made me wonder about Stockholm syndrome that occurs when a hostage identifies with the kidnapper. I choose to say I acknowledge that I have PD and am working to understand how it is unfolding in my life.²

You know what they say, “when you have met one person with Parkinson’s, you have met one person with Parkinson’s.” It is experienced differently by each and every one of us and that can add to our frustration.

Feelings of isolation

It has been many decades since I read Kidnapped by Robert Louis Stevenson, but I still remember the basics. The main character in this historical fiction novel is a teen boy who set out to find his uncle after his dad died. The uncle did not want to release the boy’s inheritance and put him on a sea-faring ship to get rid of him.

The teen might not have expected a party upon being united with his uncle but, surely, he did not expect what happened. Did he feel numb and in denial? I imagine so, plus the shock and anxiety of finding himself on that ship had to cause some feelings of isolation, helplessness, and even anger. My recall may lack details, but a shipwreck, escape, and some good encounters happened to the boy before Stevenson ended his tale. I liked it.

Advocating for myself and others

What I do not like in my own tale is this feeling of being held hostage by Parkinson’s. I wish a shipwreck, escape and some good encounters would draw my story to a favorable ending. I do not want to identify with Parkinson’s as my captor, but I do want to know the demands it will make as time progresses.

For now, knowledge is power. Being aware of the previously mentioned stress reactions and Stockholm syndrome helps me counter them with deliberate thoughts and actions. It is now several years post-diagnosis and I know many people with this disease.

I have read extensively and am an advocate for persons with Parkinson’s. These actions help me so I offer them with the hope that one or more will help you.

1. Select your medical team wisely so as to receive the best possible care. I have a local family physician and neurologist. I drive about three hours to reach my movement disorder specialist. I am fortunate to be able to do this. My major point here is to find a doctor or doctors who help you even if that means you add to your team or change doctors. There may be a time to add a physical therapist, occupational therapist, dietitian, or counselor.
2. Avoid taking on a victim mentality.
3. Gather resources! There are many reliable online sources, particularly the websites of several foundations, to add to what you learn from your local team.
4. Create a safe emotional environment. Connect with loved ones and other people who add to your strength and determination to live well each day. There are many PD-related groups on social media. One or more may be a good fit for you.
5. Create a safe physical environment.
6. Share your experience. Find or form a support group. There are many ways you can share online. Consider submitting your story to ParkinsonsDisease.net to encourage and inform others.