On April 15th, Davis Phinney Foundation for Parkinson’s presented a webinar entitled, “Social Connection and Parkinson’s.” 

We are currently living in a time of enforced social isolation because of COVID-19. For a variety of reasons, many people living with Parkinson’s may have chosen to isolate themselves before this time. This webinar explores the difference between social isolation and loneliness, the biology of loneliness, and the value and health benefits relationships bring.

This webinar along with the other webinars from Davis Phinney Foundation for Parkinson’s, can be accessed here.

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“Social Connection and Parkinson’s”

Webinar by Davis Phinney Foundation for Parkinson’s

April 15, 2020

Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach

The speaker, Dr. Al Condeluci has been a leader in community building, human services, and inclusive advocacy work for the past 50 years. He has written seven books, and serves as a consultant, coach, and disability advocate. 

When this webinar was scheduled months ago, there was no idea that we would all be confined to our homes at this time.

What is social capital and why is it important?

Refers to the value that people reap from their connected relationships. The phrase was coined in 1916 by a schoolteacher in West Virginia. He discovered the kids in his school who built relationships did better, not just in school, but also in life. He wanted to bring value to this phenomenon so called it social capital – capital meaning value. The term became in vogue with scholars and sociologists in the years to follow. Around 1990 the concept was popularized beyond academic circles, in more mainstream literature. In 2000, a sociologist named Robert Putnam really popularized the term. Public leaders started to recognize this, including Bill Clinton, and it became more known in the public square. 

 Why social capital is important is both an internal and external phenomenon. Relationships make people better, stronger, healthier, more confident and comfortable. When we build relationships we get a sort of feedback of viability from human beings. 

Externally, it makes other people better as well; collectively better. 

What is the difference between social isolation and loneliness?

In addition to his work as a disability advocate, when it comes to understanding the impact disability has one one’s life, Dr. Condelucihas personal experience to draw on as well. He has a cousin who has Down’s syndrome, and his dad had to navigate a Parkinson’s diagnosis later in life.

When disability occurs, whether it’s something one is born with or faces later in life, he believes people with disabilities have less social capital. People with disabilities are often disconnected in many ways. In the case of his cousin, she never had access to having social capital early in life. With his dad, who was very active in community, when he was diagnosed with PD, and started to show more physical symptoms, he began to retreat socially, and people also abandoned him, due to their own discomfort and nervousness. His social capital started to diminish. In his work with people with PD, he hears similar stories a lot. 

This question around social isolation and loneliness is very predominant in people with disabilities, people with mental health conditions, as well as in elderly folks. 

Social isolation really speaks to the absence of a core group that you rely on for social nurturance and human connectedness. When people are socially isolated, they are really limited socially. 

Loneliness can unfold in the presence or absence of social isolation. 

Isolation is really the toxic phenomenon. It has actually been identified by CDC, WHO and other public health organizations have identified it as a negative determinant for health risks. One of the key determinates for longer life expectancy is relationships. Social capital is critical.

Where does a person’s desire to be socially connected fit into this? 

There are some people who are naturally shy, and then there are natural extroverts, and most people fall somewhere in between. 

Whether you are more of an introvert or an extrovert or somewhere in the middle, studies have looked at how many people does it take to have in your life to guard against being socially isolated. Data shows the cut-off point is five. Five is a tipping point number. If a person has less than five intimate connections (trust, deep connection), that could put the person at risk for some of the ill effects of social isolation. Eighteen is found to be the average number of really important, intimate relationships. Five is seen as the tipping point.

Some anthropologists and social psychologists believe a typical person has about 150 relationships in their life that have some social obligations. This might sound like a lot, but it includes connections via the social platforms that you are involved with – work, family, church, neighborhood, clubs or groups, even virtual platforms like Facebook or LinkedIn.  

Our limbic system (our primitive brain system) can really only manage about 150 people. When you look at tribes or villages, the average number is about 150. In today’s day and age we really push this system to more than this number.

Biology of social isolation

There is strong evidence that when someone is rendered isolated, the biological flow changes for that person. For example, looking back on the time that humans were hunters and gatherers, when you were with the tribe, you were safe, and your system would function normally. But if you were separated from the tribe, there are changes that begin to happen biologically: respiration increases, circulatory stress begins to kick in, nervous system amps up and you become more alert because of feeling more vulnerable. If you were separated from the tribe, you became at risk of dying. These biological changes were defense mechanisms to get back to your tribe, and get you safe again. If such biological changes are occurring over an extended period of time, it has a negative health effect on that separated person (high blood pressure, for example). 

Dr. Condeluci say right now we are seeing people dying alone because of COVID-19, with only the solace of an iPad with a loved one to look at, but no one to touch or embrace them. It is a very isolating situation, and very heartbreaking to think of.

Stress levels affect one’s immunity and overall strength. Dr. Condeluci says we need to get people “back to their tribes.” During this time of stay at home orders, some of us are fortunate to be with family or loved ones, but for people who are single or by themselves, this is “really toxic stuff.” 

How do we stay engaged in an era where we have to be distant? Technology can help us here. There are ways to see each other – Skype, FaceTime, Zoom, etc. for video calls. Other apps such as House Party, offer ways to see loved ones and also play games or do activities together. Dr. Condelucisays just seeing the person is not enough; we need to find ways to engage with them. 

What are helpful things to do to help stay connected?

The host from Davis Phinney, Dr. Condeluciand webinar audience members contributed to these ideas of ways to stay connected during this time of social distancing:

• Do one thing a day to connect with people
• Picking up the phone to call a loved one
• Go outside and have a socially distanced walk or talk
• FaceTime with family or old friends
• Connecting through text messaging
• Using Zoom, etc. to:
  • Play games together
  • Have dinner together
  • Attend an online exercise class
  • Have book club meetings
  • Church or prayer groups online
• There are online music events happening right now (orchestras, operas, etc.)
• Art museums are doing virtual tours online that can be done with other people 

One of the things about this pandemic and the stay at home orders is it is bringing out many brilliant ideas of how to stay connected and share passions virtually with other people. Also, the amount of content that is being digitized, many things are going to be available later, even if someone is unable to leave their house for an activity or event.

PD and anxiety

Many people with PD experience anxiety, and right now they may find they have more worries and concerns with the social distancing, aren’t able to do the physical things they were doing before to help manage their anxiety.

Dr. Condeluci says that staying connected is critical, to everyone. He knows how real the anxiety can be, as he saw his dad struggle with heightened anxiety. One thing that can help lessen anxiety is if the point of contact is something that is relevant to the person. In the case of Dr. Condeluci’s dad, he was a writer, editor, and a musician. He tied his musician skills with writing, and became a music reporter for the local newspaper, interviewing many famous jazz musicians. When his PD started to unfold, and his anxiety went up, he feared other people looking at him strangely or seeing him as different. He really wanted to cocoon himself. One of the things the family used as a bridge for engagement was using his interest in jazz music. They got him involved in a jazz society in town, and he had such interesting history with interviews, people saw him as relevant. Even though he wasn’t relevant physically in the way he had been, he had a lot to offer to others. 

Dr. Condeluci says anxiety goes down when relevance goes up. Speaking to people with PD he asks, what is your bridge of relevance? Obviously we have to think about doing this virtually right now. Finding that bridge of relevance is the first step to building social capital. Finding “new tribe members.” We have all different tribes, your tribe is not just people with PD, that is one of them, but you also have tribe members in the other things that you do and are competent in. Thinking this way helps you feel multi-dimensional, you are not just a person with PD. 

More information about social isolation and loneliness

There are studies about PD and social isolation, although the speakers didn’t mention one in particular. Dr. Condeluci mentioned a study that is not PD specific, conducted by Cigna insurance in 2018, published in 2019. (He says to Google Cigna Loneliness study) It was conducted with 20,000 individuals in the USA, and they use the UCLA loneliness scale, which is also an interesting tool to learn about.