INTRODUCTION
By Gary Sharpe.
A while back, I wrote an article Loneliness, Social Isolation, Estrangement and Parkinson’s Disease, which was all about how the atrophy, or downregulation, of the cranial nerves in people with PD can result in significant problems in relationships and social interactions, and which can, in turn, lead to loneliness and estrangement. My main purpose was to raise awareness, not only to help people with PD understand how and why we can end up being socially isolated, and therefore perhaps to take steps to avoid this, but also to help caregivers, therapists and healthcare providers understand their own visceral reactions and bodily sensations when present with symptomatic people with PD, and therefore to perhaps be better able to overcome the natural aversion and desire to disconnect.
From the many responses I received, that article seems to have struck a cord with the PD community. Indeed, one such response was from Bob Hendrickson, a fellow person with PD who was writing his autobiography, and who asked me if he could reproduce my article in his chapter about being diagnosed with PD, as it had so informed his own experience. The part which describes how PD has affected his relationship with his wife provides such a powerful and dark account of the issues I had raised, so I, in turn, asked whether I could reproduce that section here, and he agreed, so it is included below.
The question remains what can we people with PD do to improve matters, and how can other people help us too. As Bob explains, the human social engagement system is co-ordinated by important parasympathetic cranial nerves, and my article on loneliness was indeed part of a series on the role of these nerves, and their dysregulation, in the day-to-day lives of PD:
This series of articles includes many self-help tips on how to potentially improve/prevent further atrophy of the cranial nerve functions, to try to increase “vagal tone”. The hope is to delay, or even reverse, the losses of facial expression, light in the eyes, melody in the voice, and ability to listen, all of which can impact significantly on other people’s chances at being able to relate to us, as well as our own ability to read with veracity the social cues coming from others.
However, there is so much caregivers, therapists and healthcare workers can do to help us. Perhaps the very best thing which others can do to assist, and, in doing so, also reduce the burden of care of looking after us, is for everyone else in the community to work on improving vagal tone too, by taking their own self-care and stress management seriously, becoming knowledgeable about the role and function of the Nervous System, and perhaps undertaking some of the types of neuro-exercises suggested in my articles and elsewhere along side us.
Indeed, I feel that what people with PD need most of all is to be surrounded by caregivers, therapists and healthcare providers who can act as well-balanced co-regulators, who can beam ventral vagal states at us, constantly send us strong cues of safety, be our anchors to calm, poise and grace, and help us feel that we are seen, heard, unthreatened and valued.
EXCERPT FROM “CROSSING”
By Bob Hendrickson, person with PD, former air force pilot and lead aviation accident investigator, from his autobiography Crossing.
One of the clearest explanations of how insidious this disease can be to a PDer [person with PD] who is not yet aware of their affliction, is Gary’s short, and easy read article on Loneliness, Social Isolation and Parkinson’s Disease. It is a fascinating look inside the Parkinson’s sufferer that most would never know. I hope you will find as informative as I did.
Gary focuses on the idea that neither the sufferer nor the ones close to them are to blame for the loneliness, social isolation, and other painful emotional consequences of Parkinson’s Disease. This knowledge, sadly, is small comfort. It still hurts all of them, and the closer they are, the more it hurts.
One evening, in late 2020, my wife Karen and I were having a lively discussion (a disagreement) about how my Parkinson’s was affecting our relationship and there was a moment where we were both making our opposing points quite strongly. It was then I noticed something in her eyes I had never seen in 30 years of being married to her. I saw fear. Fear of me. I was crushed. How could she fear me? Of all the people on this planet, I would take a bullet for her. I have spent almost half of my life living beside her, raising kids, keeping (or helping to keep) the household, and never, ever raising a hand to her or any of the children. I rarely raise my voice. I was even diagnosed once as being non-confrontational. How could she be afraid of me?
In order to answer this question, I did what have always done. I hit the books. I did some research, and I learned the following.
One of the largest and most important nerves in a human’s anatomy is the Vagus nerve. The Vagus nerve does not pass through the spine as most of the nerves associated with our motor functions do. The Vagus nerve is a cranial nerve, meaning it is right up front in our bodies. Among many things the Vagus nerve does, is being responsible for our facial expressions, our tone of voice, and all of the things we must do correctly to participate with other humans in a social world.
Evolution has hard-wired some very useful features into us. Karen has a healthy Vagus system, so she is adept at identifying when another person might be telling a lie, or is acting in a threatening manner. Sometimes, she does not even know when this is happening, because it is a reaction built in by evolution. It is as natural for anyone unaffected by PD as breathing. She is hard-wired to it and so are her reactions. This is where the famous “Fight or Flight” reaction comes from. Importantly, all of this happens in a normal human being without conscious thought. It is an instinct that has been developed over thousands of years of evolution. Asking her to turn it off is like asking her to stop feeling attracted to a baby. The problem is not that she is normal, the problem is that my hard wiring has a short circuit, and I blame my Parkinson’s for the loss of trust in my marriage. It is my fault, because I cannot control my Vagus nerve.
When I was flying for TWA, a flight attendant in training would ask the inevitable question: “How do I pick out the terrorist? What do I look for?”
The answer from the instructor was always, “Trust your gut instinct.” And that works for a person who has a healthy Vagus nerve.
That is one of the main functions of a healthy Vagus nerve. It is so important to our social interactions that it is hard to overstate. I am the Parkie, the one who is broken. I am the one who is knowledgeable about the causes and symptoms of Parkinson’s. And yet, I am powerless to stop whatever it is I am doing. I might get singled out as a terrorist if I am not careful.
Parkinson’s Disease sucks in so many ways. The social estrangement of the Parkie is insidious and that can be deadly in itself, because of the resulting depression. All the dreams I once had for my own future had to be modified or abandoned. I can no longer say I am a pilot. I was a pilot. I am no longer looked to by anyone in my family as the person who can help them out of a jam. Now, they just look at me and wonder if I am going to hurt myself walking across the yard or if I am capable of driving the car to the store without mishap.
Right until the moment I was diagnosed, my loving and wonderful wife never had reason to doubt that I was there for her, no matter what. Now, it all has changed due to Parkinson’s. I cannot blame her. Only someone who was super-human could possibly deal with all these fundamental changes in their spouse and not draw back. I am not super-human, and I fear she isn’t either.
This is the predicament I find myself in with most of my friends with PD. For each of us, it is different, but for all of us, it is hard. For me, I can work through the Emergency Room visits to fix yet another broken bone. I can suffer through the indigestion. I can laugh at myself when I hit the rumble-strips one too many times on the drive to the doctor’s office and Karen has to take the wheel. I can lay awake all night and I can fight my own desire to be someone that I am not anymore. I can type the same line five times because my fingers quit on me. In short, I can deal with PD when it comes to me. What I cannot seem to change is PD’s effect on my loved ones, and that makes me hate it like nothing else in my life.