Applying ‘Project UnLonely’ to Parkinson’s disease
Music can be a path to ‘unlonely’ as we are reminded by recording artist Jason Mraz.
By Indu Subramanian, M.D.
“To be unlonely in this world, we each need to find “our” people, the ones who accept us as we are, and welcome hearing our story.” - Jeremy Nobel
I was reading “Project UnLonely” by Dr. Jeremy Nobel and was struck by how much ‘negative’ impact accompanies loneliness. I thought it would be a ‘great exercise’ for this month’s parkinsonsecrets.com blog to pick quotes and concepts from Project UnLonely and apply them to Parkinson’s disease.
I considered all the people I have met living with Parkinson’s disease and their overall high risk for loneliness. In his book, Dr. Nobel discusses the many risk factors for loneliness. Persons with Parkinson’s frequently ‘tick five out of the five’ risk factor boxes for loneliness. Many of our person’s with Parkinson’s disease are older, disabled or ill, and may have decreased mobility, independence, quality of life, cognition, depression, anxiety and even apathy. Person’s with Parkinson’s disease may be traumatized from life events or by ‘receiving the diagnosis of Parkinson’s disease.’ Person’s with Parkinson’s disease may be ‘minoritized’ and also can be at risk for being ‘left behind,’ due to the digital divide. In our work on the effects of loneliness in person’s with Parkinson’s disease, we identified it as a modifiable risk factor.
You can screen for loneliness in under one minute, in person or on the phone, with these three questions:
How often do you feel that you lack companionship?
How often do you feel left out?
How often do you feel isolated from others?
“Loneliness is a natural biological signal, like hunger or thirst. It is a flashing warning light on our mental dashboards that indicates a problem. Just as the gnawing in our stomachs tells us we should eat, the ache of loneliness tells us we should connect with other people.” -Jeremy Nobel
The idea of a biological signal for loneliness builds on the work of Dr. John Cacciopo. “Just as physical pain is an aversive signal that evolved to motivate one to take action that minimizes damage to one’s physical body, loneliness is an aversive state that motivates us to take action that minimizes damage to one’s social body.” So we can infer that when we feel lonely, our body is ‘literally’ telling us to seek out connection. The challenge is that we may not be able to decode this ache or “aversive state,” which could include feeling down, low, sad, bad or just crappy.
The lonely feeling may be ‘miscoded’ as anxiety or depression, and it can disrupt sleep. Loneliness can negatively affect our brain. Loneliness can trigger us to become hyper-vigilant and to fixate on negative or threatening stimuli. This hyper-vigilance can lead to a cycle of isolation and withdrawal. It can also lead to paranoia or the feeling that others are against us and not with us.
Nobel in his book describes three types of loneliness:
1. Psychological loneliness - This is the classical feeling of being lonely or “wishing someone else was there, a specific someone, a warm and fuzzy flesh-and-blood person they can feel reliably and authentically connected to. It is marked by a longing for an authentic connection to another person, someone to trust and tell your troubles to, someone who has your back in anxious times, someone to care about.”
2. Societal loneliness – This is the feeling you get when around people. “We may ask ourselves “As I imagine entering a room full of people, am I welcome? Is my arrival anticipated? Do I fit in? Will I be safe?” With psychological loneliness we might ask, “Where are my people?” With societal loneliness we ask, “Where is my seat at the table?” per Nobel
3. Existential loneliness/spiritual loneliness – This is the loneliness that comes from pondering the ‘meaning of life.’ “This loneliness is part of the human condition. It arises from the fundamental mystery of life and its meaning on the planet.” You may feel connected intimately to others, but something is still missing. Asking questions such as “where did I come from? Why are we here? Do we connect to what was here before us, to what will be here after we depart? Do we have a mission and purpose that connects us to the universal? Do we matter? Do our lives have consequence? Where do I fit in?” There can be an overlap between psychological loneliness and existential loneliness. “If you lack connection with people, you are at elevated risk of losing connection with yourself and with meaning in your life.”
The 5 risk factors for loneliness:
1. History of trauma- person’s with Parkinson’s may have a past history of trauma, either in their childhood or possibly in later-life. Many of the veterans that I have cared for have both post-traumatic stress disorder (PTSD) and Parkinson’s. Many minoritized populations also have had a greater than normal exposure to trauma. Finally, receiving the diagnosis of Parkinson’s disease has been described as a traumatic experience, for far too many individuals.
“Healing from any post-traumatic stress calls upon you to turn a fragmented set of troubling memories into a consciously formed life-narrative. First, you recall the details of what life was like for you before the diagnosis of Parkinson’s disease.” You may ask, “Who was I before I got diagnosed with Parkinson’s? Next, you retell the story of the traumatic event itself. Finally, you appreciate and talk about how the experience changed you. “What has my life journey been like since the trauma?” Following this sequence can facilitate an opportunity for the brain to relax. You have provided a potential for a reconsolidation of the memory. The memory can become coherent and no longer accompanied by overwhelming emotions.” - Jeremy Nobel.
2. Increased age: Our society commonly embraces ageism or discrimination against older people; it is usually the result of negative and inaccurate stereotypes. Our society is hyper-focused on youth, beauty and productivity. “If you have a reason for being societally excluded, as an immigrant, as a person of color, or because of your gender identity, aging only adds to that sense of loneliness.” We may ask ourselves “Was my life meaningful? Do I have a legacy? Who will miss me when I’m gone?”
A recent survey revealed that 60% of people would be reluctant to admit feeling lonely, even though more than 80% shared that they knew at least one person who was lonely. Further, 24% endorsed believing they were not important to anyone. A surprising 6 in 10 agreed with the statement that “they wished they had more friends.”
The fear of death can also be debilitating. The lack of spiritual or religious moorings can lead to existential loneliness. Nobel writes that, “anxiety about our mortality often builds walls that keep us from connecting. We’re so afraid of dying and the inevitability of the disconnection that it represents that we may keep ourselves distracted to the point where we remain apart from ourselves. This disconnection from self can be the first determinative tear in the fabric of connection. Traditional religion has calmed this fear for most people, for most of human history, but modern societies are more secular and less religious than any societies in the past. For many, living individualistic and also reflexively striving for culture in the absence of religion or a spiritual orientation opens up the void of existential loneliness”
3. Illness. “Illness is the night-side of life, a more onerous citizenship.”
Susan Sontag author of many books including, You Are Not Your Illness, wrote that “everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.”
“The illness left her feeling cut off from the rest of humanity.
“I felt that people didn’t want to listen and couldn’t ever understand my life experience.”
“This sense of isolation, of being separate from people who are well, can be as painful as any of the worst treatments or symptoms that we might have to endure. It is loneliness in its most profound form.”
As we wrote about in our previous blog on stigma in Parkinson’s, we know that when a person get’s a diagnosis like PD they can feel “othered”. This “othered’ state, can add to a sense of not belonging, which can lead to more avoidance and to further isolation.
The sense of walking into a room and wondering if other people are watching you and making judgements about you can be debilitating in Parkinson’s disease.
The stigma of feeling like people in society are viewing you as a as an outcast can be isolating.
We feel alone in our loneliness, and people not surprisingly ask “are they eager to see you? Are you welcome? Are you safe? Do you feel a sense of belonging? Or, are you ignored, disregarded or shunned?
4. Minoritized Populations: There are many intersections of minoritized populations which place them at an increased risk for worse health outcome(s) due to social determinants. Being a person of color, an immigrant or someone who does not speak the language can place you at risk. Being LGBTQ or a woman can also place you at increased risk for loneliness. These risks can mushroom and contribute to poor mental health outcomes.
“Societal loneliness can be experienced as a consequence of racism, sexism, homophobia, and transphobia. The larger society has a tendency to reject anyone who is different, whether because of their age, weight, a disability, or simply because in some way they are outside the social norms for attractiveness, speech, dress, or faith. In many cultures, poverty itself is judged as a moral failing or a source of shame, and poverty a source of profound loneliness.” Nobel
5. Living in our Modern World and the Digital Divide: Many populations are ‘left out’ of the modern digital landscape. If you cannot access computers, smartphones or the internet, or alternatively, you do not have much digital literacy, it is easy to become ‘disconnected.’ and feel left behind.
Nobel reminds us that “psychologists recognize aspects of traditional masculine values that can set older men up for loneliness. With old age and retirement, men commonly lose these friendships as shared activities fall away and work relationships end. As their support networks wither, men often withdraw in old age, and many risk entering the vicious cycle of isolation, leading to loneliness and loneliness leading to still-deeper isolation.”
Who ‘dies’ in a heat wave? It is frequently the person who is the most disconnected and the most isolated and consequently likely the most lonely. Unfortunately, this eventuality can occur in older, men of color.
“In general, women are much more likely than men to retain their social relationships as they age, and so under the stress of the heat wave, they were more likely to have helpful friends checking in on them. In addition, if the need arose, women were more likely to actively seek assistance. Men, by contrast, were less likely to have anyone checking on them, and less likely to ask for help even if it was available.” Nobel
I believe that person’s with Parkinson’s disease are in a vulnerable group for loneliness. Many check the majority of the five risk factor categories.
Nobel enlightens us on ‘the pyramid of vulnerability as a ‘traditional public health model’ which can be used to teach about loneliness. The pyramid applies the concept of triage to aid us in understanding the population and to divide them into 3 tiers. The division into each tier depends on the risk level for loneliness which may lead to a medical or social concern.
“In the case of loneliness, the top tier of the pyramid is occupied by people whose loneliness is so profound that it is causing them significant life-damaging consequences. In the bottom tier, at the base of the pyramid, are the vast majority of people who feel lonely from time to time, but are not really affected by it. The middle tier constitutes the most interesting group, because they are at risk of falling victim to life-damaging loneliness for any number of reasons. The goal of screening for new onset loneliness is to identify those in the middle tier and provide them with support and interventions to help them reduce their loneliness, so that they can re-enter the general population in the pyramid’s base.”
What can you do to help yourself if you are feeling lonely?
Nice article in Psychology Today on 18 ways to overcome loneliness.
1. Be intentional about cultivating the relationships you already have.
Loneliness is defined as the “subjective gap between the level of human connection you have and the level you feel you need.”
Working on our existing friendships and relationships may enhance quality of life. When we address loneliness, we should consider the quality of the relationship, and not the quantity of the relationships.
“For someone with elevated levels of loneliness, practicing an orientation of acceptance toward such encounters can break the cycle of loneliness in which self-judgment can lead people to isolate themselves further. Feelings of loneliness don’t necessarily mean you need more friends, and gaining mindful recognition and deeper appreciation of the friends you already have, might be more effective in reducing your painful feelings of loneliness than seeking more friends.” Nobel
2. Be Mindful/ Meditate.
Being present in the moment and actively seeking to ‘give gratitude’ for what you have, can be a crucial piece for addressing loneliness. Too often, we spend our time ruminating about the past, or worrying about the future.
“Mindfulness can enhance your sense of self-sufficiency and can help calm your self-judgment and anxiety to the point where you recognize that your needs for connection are relatively modest and easily met.” Nobel
3. Be Intentional in Seeking ‘Real’ Human Connection.
Get ‘extra hugs’ from people who are close to you. Value the physical touch with people in your inner circle. Observe people’s eyes, faces and smiles; and try to connect with them. Online or phone contact is better than no contact, however personal touch is even better.
Nobel suggests to “make a house rule that everyone gets a 20-second hug every two hours.”
“And if you live alone, but have a pet, make a practice, on the hour, of taking a break to pet the dog or cat or even the hamster.”
4. Express Yourself through Art. Artistic expression can be therapeutic.
“The alleviation of loneliness occurs in the biology of creation, in the dynamic intersection of memory, imagination, and making that lends authenticity to self-expression, which results in the experience of being witnessed and seen. We are all born with the gift of creative expression, and we enjoy its benefits by exercising the creative instincts that nature has granted us. We have found that artistic expression of any kind, especially when preceded by a brief session of mindful meditation or activity, is a powerful tool for reconnecting with oneself. “
Additionally, there is a need to focus with full attention to the artistic task. To be fully engaged in the moment (mindfulness). To use one’s imagination to express one’s self… to be seen and heard by others, and to connect in a group experience. The artistic expression ideally is something that we love, and that brings out our authentic self. We should allow the full range of emotion, conscious and subconscious.
“Just as we’re expected to get over our feelings of loneliness when we become adults, most of us are compelled while growing up to surrender our childlike impulse to create. During our adolescent years in particular, our creativity is either nurtured, if we show talent, or squelched if we do not. We become very sensitive to other people’s judgments during those years.”
What things did you enjoy doing for creative expression when you were younger? In our youth, before people told you, you were not good at something or you could never make a living doing that? This is an opportunity to rewind and ‘lean back into’ these activities? Art may include drawing, painting, sculpture, poetry, dance, gardening, and planting (these are a few examples).
Expressing and resolving trauma may be possible through the use of artistic expression. Things that we may not feel comfortable putting into words or we feel too vulnerable to talk about, may possibly be shared through other mediums.
“By making a creative representation of a troubling memory, the maker can offer the mind a new narrative about the traumatic memory, beginning to reconsolidate the memory without words. Sharing the made artifact or performance becomes a channel for communicating the memory and for making a safe, authentic emotional reconnection with other people.” Nobel
5. Write a Haiku: “Haiku, is one of my (Jeremy Nobel’s) own favorite poetic forms, and it limits the writer to three lines in a pattern of five, seven, and five syllables, which is so simple and fun that we often use it in our ‘creativity circle’ exercises.”
Creative writing and poetry or composing lyrics can also be a great way to connect with how we are feeling in the moment.
“Could a haiku a day keep the doctor away, so to speak? I don’t know. I can’t say for certain that replacing time spent online with time spent in creative “time wasting” will make you less anxious and more connected. But, I do know that ten minutes writing a haiku is likely to be time better spent than ten minutes of scrolling your Instagram feed.” Nobel
6. Share what you love about other people’s works of art. If you feel awkward about creating something new that is an expression of your own thoughts and emotions, appreciating and sharing other people’s work and talking about what you like about it, may be an alternative way to create an experience where you can feel seen and heard. What is your favorite poem? What is your favorite piece of art? What is your favorite song lyric? What do you like about it and why? Sharing can be therapeutic and a terrific way to get know others. It may be a safer and more accessible way to express yourself.
7. Get out and Experience Awe. The antidote to trauma and loneliness is experiencing awe.
“The awe experience is the flip side of the traumatic experience. Both command our full attention and arouse intense, hard-to-define emotions. But unlike the traumatic experience of injury and threat, we feel awe when our emotions are stirred to their utmost in a safe and controlled context.”
Awe can be experienced in nature, in a religious context, in art and in music. Determine what brings you ‘awe’ and go for it.
What is the bottom line?
We can embark on our own ‘Project UnLonely’ for Parkinson’s disease. We just need to be determined and deliberate to bring meaning and purpose to each other’s lives. Social Connection has provided comfort for me and has been a medical chicken soup for the soul in my career and in my life. I hope it can provide similar benefits for you.
References: For information on Jeremy Nobel’s book and also Project UnLonely check out: https://www.artandhealing.org/unlonely-project/ and his book on Amazon.
Indu Subramanian is co-editor of the parkinsonsecrets.com blog and author of this blog on Project Unlonely. She is a movement disorders neurologist and also an integrative medicine specialist.
Michael Okun is the author of Parkinson’s Treatment: 10 Secrets to a Happier Life and a co-editor for parkinsonsecrets.com.
Jonny Acheson is the blog artist, a physician and a person with Parkinson’s.