Just as this illness presents differently, the symptoms will progress differently. For my father, it was a quick process into dementia and delirium accompanied by freezing and stiffness, he never presented with much of a tremor at all. My husband, on the other hand, is not showing dementia or cognitive challenges other than a slowing of his processing skills, but his tremors became unmanageable early and are only controlled with deep brain stimulation and medication. Since he is not showing any signs of dementia, a friend recently commented that he was doing so well. She was surprised when I said that I agreed especially as he is in the advanced stages of his journey. I think she questioned my judgement because, as she put it, “he still has all his faculties”. My response was that he would probably be one of those people with Parkinson’s who would die with all his faculties, it’s just how the disease is presenting for us.

There are two basic scales for determining where someone is on their journey with Parkinson’s. The first is the Hoehn and Yahr, developed in the 1960s and used to evaluate physical symptoms. It didn’t take into the account the cognitive or mental challenges many People with PD faced. In the 1980s, a new scale was designed utilizing this format to evaluate movement, but adding components that test the mental and mood changes that are taking place. Called the Unified Parkinson’s Disease Rating Scale (UPDRS), it is the one used most these days because it gives a more complete picture of progression.

At any rate, it doesn’t really matter where we are in this journey. My husband most often seems to be in stage 4 to 5 which is the highest range. On his good days, he may even appear to be back in level 3, but I know it won’t stay that way. The day is coming when, thanks to the great research being done in this arena, a medical team will be able to pinpoint where my husband is currently and where he is headed. I’m not sure that would be better, I think I like the uncertainty. It allows space for hope, dreams and imagination, something I would lose if I knew exactly what we were in for next.

I wake up each day wondering what will happen today. I wonder if my husband will be having a good day or bad day and will that impact any plans we might have. I wonder if any additional challenges we had yesterday will still be present. I wonder what surprises Mr. Parkinson’s disease might have in store for us and it worries me. I have developed a simple way to alleviate these concerns that I call my Four A’s.

Assess, Accept, Adapt, Adopt, these Four A’s have become a format for moving forward in my journey. It started way back when my husband was first diagnosed and we had to Assess our understanding and abilities as changes started coming. We had to learn to Accept the new direction in our lives thanks to his diagnosis of Parkinson’s. Many of the things we now do are Adaptations of what we used to do, modifications that we have Adopted to make life easier.

It starts every morning with a simple question, “How are you feeling today?” Once I have his input, I can start looking at our schedule and we can discuss whether it is reasonable or might need to be changed. I know that things can change mid-day so I always have to keep a bit of flexibility in any plans. I Assess his capabilities today, Accept where we are in this moment, Adapt to fit the situation and Adopt the new reality moving forward. I use this on a daily basis, sometimes on an hourly basis. Other times I use this same process when bigger life changes have happened. It’s calming to know that I have a system that works to help me move forward in such uncertain circumstances.

My husband and I were talking the other day when he mentioned that maybe I should write about how people get Parkinson’s in the first place. I asked him to clarify and he said that sometimes people with PD feel that they have the disease based on choices they made in life. It’s not that they think they’re being punished, but that career or perhaps lifestyle choices may have given them this illness. While there may be some truth to that concept, no one in their right mind would ever choose this pathway in life. It’s just unthinkable.

There isn’t a test that can tell us when my husband first “caught” PD. Was it exposure to pesticides when he was working in the orchards as a young man? Or, was it an injury he sustained while in the National Guard that led to this diagnosis? Was it something he did, something that was done to him, something he accidentally experienced along the way? My point is, he didn’t ask for this diagnosis and would never have made an intentional choice with a known risk of Parkinson’s Disease.

I get angry at times when I see how his diagnosis has impacted us and the changes it continues to bring to our lives. We both say freely that this isn’t how we pictured our retirement years, yet I never blame my husband for what we are missing out on and, more importantly, he shouldn’t blame himself. He did not choose PD, it chose him. I chose him too, and if that means we live with PD then so be it. All blame for the difficulties we face falls on the disease itself, not on my wonderful husband who lives with it.