What Follows "You Have Parkinson's Disease?"

In 1979 I was unaware of a newly published book that would become meaningful to me 42 years later. Reading Transitions, by William Bridges, recently opened my mind and heart to a deeper understanding of responding to these 4 words, "you have Parkinson's disease."

I remember my negative response to that diagnosis. I have heard many persons with Parkinson's (PwP) describe their feelings. These words have come up very often: shock, disbelief, denial, anger, and grief. Yes, you read that correctly. Grief.

Life before diagnosis

Why had my healthy lifestyle not prevented this (shock)? Despite having recognized certain symptoms, I was in disbelief that they added up to a Parkinson's disease (PD) diagnosis.

Surely it was essential tremor (denial). Why ME (anger?). I cannot speak for others, but I grieved my life as I knew it before the diagnosis. It was not perfect, but there was no low comparable to hearing I had a chronic disease.

I also grieved the fact that retirement now looked entirely different than what we had planned. I grieved the many times we skipped doing something fun in order to save money and put work in front of family time with the intent of feeling less stressed later.

Stages of grief

Call it 'grief curiosity' if you will, but I needed a quick primer and found myself with another book, this one from 1969. Elisabeth Kübler-Ross wrote On Death and Dying and there identified the stages of grief as denial, anger, bargaining, depression, and acceptance.

I considered each stage in regard to hearing my diagnosis. Denying PD would not do me much good, in fact it could delay helpful treatment. Being angry might seem fine at first. I usually follow anger with introspection to find out what, if anything, I can do.

After that, I need to give up the anger because I know how it can be harmful. I seem to have skipped the bargaining stage and wonder if some friends with PD had a bargaining experience.

Depression? I was sad, but not full out depressed like others have mentioned. Acceptance? Do I willingly tolerate having Parkinson’s? I think the key word is "willingly." I am a bit begrudging about it.

Going through a transition

So, what did my review of grief, in light of a Parkinson’s diagnosis, have to do with transitions as explained by William Bridges? I found it interesting that Bridges differentiates between change and transition.

A change is situational, such as when the neurologist told me, "you have Parkinson’s disease." At that moment there was an "old me," the diagnosis, and the pending "new me." A transition is psychological. There is a sense of death and re-birth. Bridges identifies 3 phases of a transition: the ending, the neutral zone, and the new beginning.

It seems to me that the first 4 stages of grief occur during the ending phase of transition. Acceptance, grief’s final stage, opens the neutral zone and is pivotal as one seeks a new beginning.

My new beginning

My "new beginning" started with managing medications and educating myself about PD. I had exercised for years, but amped up my efforts. I organized and participated in research and became an advocate for PwP in the community.

I decided to retire earlier than expected and now divide my time between self-care, family and friends, and volunteer work.

I try not to lament the retirement I envisioned. I strive for wellness even as Parkinson’s requires me to adapt. I do not always succeed. For now, this is me living well with PD until the next change happens. May each of you make the best of your new beginning and grow from there.