parkinsons

Find simple processes to help you get through the unexpected challenges Parkinson’s brings.

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.

People do not knowingly bring Parkinson’s Disease on themselves and shouldn’t feel blame, or be blamed, for the challenges it brings.

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.

One of the biggest challenges about Parkinson’s Disease is the uncertainty of where it will go and what might happen next. That may also be a blessing in disguise.

As research continues and tests are being developed that can detect Parkinsonism, my question becomes when will it be possible to define the actual type of PD someone has? Will this new research allow medical teams to tell us whether our loved ones will be facing more physical or mental challenges as their disease progresses? Will we finally have a roadmap for the journey we are on? More importantly, would I want one?

One of the things I often complain about with this diagnosis is the lack of clarity for our future. We are told that the disease is progressive and that there are many possible outcomes, but no one can actually predict what will come next for us. Now, it appears that the body of research is finding similarities in the physical makeup of people who develop the different variants of Parkinson’s. Further research should lead to a better understanding of the disease, new and better treatments and even a cure. As they distinguish between characteristics of patients showing different symptoms, it seems that neurologists may one day be able to give a clearer prognosis to individuals when the disease is first detected.

My husband was diagnosed 14 years ago and we were given lots of frightening information about possible outcomes. It might have been helpful for us to know that he would face mostly physical challenges rather than cognitive, but I’m not sure that it would have changed anything. I don’t think I want to know if cognitive challenges beyond normal aging or hallucinations are in his future unless it comes with a proven plan for treating those symptoms. I guess what I’m saying is that not knowing is tough, but knowing might be tougher. Perhaps there’s truth in the old saying “what you don’t know can’t hurt you.” I think, for now, I like not knowing every turn in the road ahead as we continue our journey with Mr. Parkinson’s Disease.