Journey with Parkinson’s: A Reality Check

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” Joseph Campbell

“The first step toward change is awareness. The second step is acceptance.” Nathaniel Branden

Introduction: If you have Parkinson’s, we share the common thread by its name but not by its expression. Individually, we may be very different from one another concerning our disorder. I usually describe Parkinson’s as some evil entity, trying to take over our minds, mingle madly with our lives, and it will never let up. Parkinson’s changes your life, your perspective of life, and now and then, we need to do a reality check on ourselves with this disease. Those of us with Parkinson’s will change, as will our families and loved ones, as they adapt to this wicked disorder.

One of my favorite songs from high school was “Father and Son”, written by Cat Stevens (1970). A poignant line in this song still resonates with me today: “But you will still be here tomorrow, but your dreams may not.”   Unfortunately, Parkinson’s may alter your perception of life and the landscape of your dreams. We can each recall many stories about the reality of Parkinson’s. Here are a few stories I can tell about the reality of Parkinson’s.

“I accept reality and dare not question it.” Walt Whitman

Type of Disease: We/I once said “PD (Parkinson’s disease) is a complex disorder, underlain by both chronic and progressive neurodegenerative processes, that consists of an array of motor and nonmotor symptoms.” [Hall, M.-F.E., and F.C. Church (2020) Integrative Medicine and Health Therapy for Parkinson Disease.  Topics in Geriatric Rehabilitation 36.3 (2020): 176-186. https://bit.ly/3kIDY2K]. When you re-read this sentence you finally realize that Parkinson’s is both a chronic disease and a progressive process.

An AI explanation of a chronic disorder is as follows (click here): “A chronic disease is a long-lasting condition that usually cannot be cured but can be managed through ongoing medical treatment and lifestyle changes. It typically persists for a year or more and often requires continuous care. Common examples include diabetes, heart disease, arthritis, and cancer. ” Doing the same thing for a progressive disease reveals this information (click here): “A progressive disease process refers to a medical condition where the symptoms and severity of the disease gradually worsen over time. This means that the disease doesn’t remain stable or improve, but instead continues to develop and negatively impact the individual’s health.”

The simplicity and utility of the first sentence in this opening paragraph may somewhat hide the importance of the description of Parkinson’s. We may die because of something unrelated to Parkinson’s. Still, we will not shed Parkinson’s from our physical being because it is both a chronic and progressing disorder.

“Truth is the only safe ground to stand on.” Elizabeth Cady Stanton

Treating this Disease: I once said this about Parkinson’s: “At present, PD remains an incurable disease. As such, treatment goals in PD management center on slowing or halting disease progression [1,14]. The complexity of the factors that contribute to the development of the major sporadic form of PD demands a multi-pronged therapeutic intervention and plan to halt or slow PD progression.” [Church, F.C. (2021) Treatment Options for Motor and Non-Motor Symptoms of Parkinson’s Disease. Biomolecules, 11, 612. https://doi.org/10.3390/biom11040612].

This review article described the framework or strategy one could use to treat Parkinson’s. It all begins with you accepting and agreeing to go to war against your disease. I will not provide the details of the treatment plan. But it might require you to get on the ground to exercise to help slow down your disorder. Or your treatment plan may suggest deep-brain stimulation surgery to help reset your brain and neural networks. Whatever the treatment is, you are still present and you remain you. Living with Parkinson’s is not a walk in the park; it will require resilience and courage. Yes, the reality of Parkinson’s is that it can be unsettling.

“I still get very high and very low in life. Daily. But I’ve finally accepted the fact that sensitive is just how I was made, that I don’t have to hide it and I don’t have to fix it. I’m not broken.” Glennon Melton

Surrounded by Hope: This blog began on March 9, 2015, 10 years, 1 month, 20 days ago, and counting. I have focused on the science of the disease and various treatment processes of Parkinson’s. Also included in this blog are posts describing the concept that attitude can make a difference in your approach to living with Parkinson’s.

My portrayal of this disease is that it will be a difficult road, but by persistence, one can shape their world to treat and be responsible for their fate. Long-time readers of this blog will know that I take a positive approach to treating my own Parkinson’s, and the backbone of this positivity is focused on maintaining my health. To bolster this viewpoint, I have often written about the importance of using hope to help guide you through the difficult days. I have never intended that you not have an exact picture of the reality of your Parkinson’s.

“Sometimes it is more important to discover what one cannot do, than what one can do.” Lin Yutang

The Importance of the Physical Therapist (PT): I have had the good fortune of working with numerous outstanding physical therapists. They have served many functions regarding my rehabilitation, and they are truly focused on helping me get better, enabling me to regain that “edge” back into my life. While each of my PTs is uniquely different from the others, they share some traits I admire, including: intelligence and a strong commitment to be an expert in their field; willingness to work you hard and work hard with you; they design useful workout plans focused on getting you back to normal; and finally, they honestly appraise your future and give you advice regarding the likely trajectory of your disorder. In other words, they give you a reality check.

“Reality is that which, when you stop believing in it, doesn’t go away.” Philip K. Dick

My New Dose of Reality: In my past few blog posts, I have mentioned a new symptom and the approach I am taking to deal with it. Specifically, I am learning about Freezing of Gait (FOG) in Parkinson’s and using Crexont. Crexont is an extended release form of carbidopa-levodopa to increase the on-time, which is vastly better than immediate release carbidopa-levodopa. I have probably read 30-40 papers on both topics in the past 3 weeks. I am preparing two new blog posts to describe further this condition of FOG in Parkinson’s and Crexont, one of the latest carbidopa-levodopa drugs approved by the FDA.

Part of my treatment plan I devised is to seek out the help of a PT that understands gait freezing in Parkinson’s, and to develop a strategy to stop it if possible. I found a PT with such a skill set. Her name is Katlyn S. Her thesis work in PT focused on freezing gait. I have met with her several times. We have had a meaningful discussion about the freezing of gait, and of course, I have many questions. She has answered them all well and devised a plan to help me deal with FOG. It is related to the level of dopamine in my system, so taking Crexont is helping a lot to prevent FOG.

Yesterday, I asked her if my frozen gait could be reversed. She looked at me, and calmly said something close to the following, “Remember when you got your diagnosis, the Neurologist told you that Parkinson’s was a chronic disorder with symptoms that progressed. And living with Parkinson’s may come with difficulties. Freezing of gait is a sign of disease progression. While we likely cannot reverse it, we can devise a plan to hopefully reduce them from occurring and also how to deal with them when they occur.” I immediately understood and realized she was the kind of PT who could help me live with Parkinson’s. My reality check delivered, and now to continue to live with a positive and hopeful attitude as I embrace this new symptom of Parkinson’s and adapt my life to Crexont.

“Pause and remember – When you fight reality, you will lose every time. Once you accept the situation for what it truly is, not what you want it to be, you are then free to move forward.” Jennifer Young