“You’re not alone: tips for building connections in the Parkinson’s community” – Webinar notes

“You’re not alone: tips for building connections in the Parkinson’s community” – Webinar notes

In May, the Michael J. Fox Foundation (MJFF) for Parkinson’s Research hosted a webinar on isolation and apathy in Parkinson’s disease (PD). The webinar was a question-and-answer format and featured a panel including a movement disorder specialist, Rock Steady Boxing coach, social worker, and person with PD.  

Panelists discussed how the COVID-19 pandemic has worsened the impact of isolation and apathy on those with PD. Additionally, they mentioned different ways to get involved and connected, such as at an exercise class, support group, and through a social worker or church.

For more information on apathy, please see the Stanford Parkinson Community Outreach webpage here

For more support resources please see the Stanford Parkinson Community Outreach webpages here:

For a recording of this webinar, please see the MJFF YouTube webpage here

See below for notes on the May 20th webinar.

Regards, 

– Joëlle Kuehn


“You’re not alone: tips for building connections in the Parkinson’s community” – Webinar notes

Webinar Host: Michael J. Fox Foundation for Parkinson’s Research

Webinar Date:  May 20, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Panelists: 

Lynn Hagerbrant MJFF patient council member

Ned Neuhaus, Rock Steady Boxing coach

Indu Subramanian, movement disorder specialist, UCLA 

Lance Wilson, neuroscience medical social worker, Thomas Jefferson University Hospital

Moderator: 

Stephanie Paddock, VP of community outreach and events, Michael J. Fox Foundation


Note:  In this part of the webinar, questions were asked by Stephanie Paddock.

Question: Lack of motivation is frustrating. What can you tell us about apathy in Parkinson’s Disease (PD)?


Answer (Indu Subramanian):
Apathy is very common in PD. Around 40% of patients have apathy. It’s very disabling and we don’t really have pill treatments or therapies outside of behavior modifications, so it can be very frustrating. 

Question: What are different kinds of isolation, what advice can you give care partners?

Answer (Lance Wilson): The three kinds are physical, social, and emotional.  Emotional and social isolation have been impacted by the pandemic. Advice would be pushing limits, assessing microsystem relationships you have with friends or family. With quarantine, people may have had to push through boxes and boundaries to continue and maintain healthy relationships. 

Question: Isolation can worsen other PD symptoms. Why is that?

Answer (Indu Subramanian): In our study we found that the negative effects of being lonely were as bad for people with PD and their symptoms and their quality of life as the beneficial effects of exercising seven days a week, 30 minutes a day was good for you. This means it is as important as exercise. When people are lonely, they get isolated, withdrawn, they don’t feel so well, their motor symptoms and non-motor symptoms get worse, they get more stressed out, which leads them to get even more isolated and withdrawn. 

Question: How has the pandemic and social distancing impacted both you and your community?

Answer (Lynn Hagerbrant): People with PD sometimes isolate themselves because they are embarrassed of their symptoms or they feel uncomfortable in social situations, so the pandemic only magnifies the situation. In one of my communities, instead of meeting once a month in person, we now meet weekly over zoom. We also started zoom exercise classes. It brought us closer together.

Answer (Ned Neuhaus): As a rock steady boxing coach, we used to see the same people multiple times a week, and all of a sudden the network was gone. We started doing zoom classes. We open classes a half an hour early so they can socialize with their friends. Now that we’re back in the gym it’s like they never left. 

Question: How can a social worker help people and families with PD to build connections and manage relationships?

Answer (Lance Wilson): The first thing would be to help identify if there are any issues that would stop or block someone from maintaining or making connections. If we can identify a cause that leads back to apathy, then we can try and help interrupt the cycle. We also give insight into what a healthy dynamic and relationship should look like. Some examples are teaching authenticity or empathy, and tying people to programs and support groups that already exist. 

Question: Did you see an influx of people this last year needing your services?

Answer (Lance Wilson): I’ve seen a huge influx of people who need mental health resources, and need to talk through the challenges of isolation of COVID-19, as well as not being able to connect to individuals. I’ve also been helping more people with coping.

Question: How do you go about building community connections and how has the pandemic changed this?

Answered (Ned Neuhaus): I realized you need to continue to do the things you love to do or else PD will take it away if you let it. I put myself out there, I tell people what I think and I’ve experienced, and it’s allowed me to build connections I would have never had, had I not had PD.

Question: How did your support group get off the ground and how has it evolved?

Answer (Lynn Hagerbrant): It started through the Michael J. Fox Foundation. An ambassador visited me and turned my world around. It was through that that I spoke at an event, and at that event I met a couple and we cofounded our support group 7 years ago. We have over 375 members and are a peer led support group. The connections we’re making are tremendous.

Question: What advice would you give patients who are looking to find support groups or form other types of connections?

Answer (Indu Subramanian): When you’re looking at relationships in your life, there are various spheres, the most intimate being your spouse, others being a doctor or a friend circle. Think about the things that bring you meaning and think of people who can speak to that and you can do the activities with.You can still be lonely even with your spouse, and a couple can be lonely together. Think about meaningful connections who may be high school friends, people on your christmas card list, neighbors, and you’ll find people who bring you joy who you may not have previously interacted with.

Where else can you make connections (Stephanie Paddock):

  • Research studies
  • Neighborhood
  • Grassroots advocacy
  • church/community center
  • Team Fox/community events

Question: Where else would you suggest people try to connect with others? What have you done?

Answer (Lance Wilson): The above list are great places to start, but even simple conversations with neighbors or grocery stores can open opportunities. Gyms and exercise groups are also great. 

Answer (Lynn Hagerbrant): Through having the support group over zoom, I formed a women with PD support group where we’re from different states. Try to reach out to high school friends and connections with people outside of PD because there is more to you than PD.

Question: For people who are “zoomed out”, and don’t want to engage in an online format, what suggestions do you have?

Answer (Indu Subramanian): I think the last year and a half has been a time of grief, whether occasions you missed, or losing a loved one or something that means something to you. When bad things happen, we’re used to connecting through social situations. I urge people to get out into nature, that can be therapeutic. Connection doesn’t have to be with a huge group of friends, it could be one friend in a nature element or a walk in a neighborhood.

The panelists shared about Michael J. Fox Foundation’s new Parkinson’s Buddy Network. The Parkinson’s Buddy Network was created to combat isolation during the pandemic and after. It can be used to make meaningful connections, engage in important dialogue, find PD resources, and build long-lasting relationships. 

 It can be accessed here: parkinsonsbuddynetwork.michaeljfox.org/ 

Note:  In this part of the webinar, attendees offered questions.

Question: How do I find a local social worker and support group?

Answer (Lance Wilson): If you are in an area with academic medical institutions, start there. If you aren’t, you have to get creative. Contact your insurance because there are typically social workers or coordinators at your insurance company that can navigate you to some additional resources as well as finding those local institutions. 

Question: How did you find your small group of women with PD?

Answer (Lynn Hagerbrant): It was through the Michael J. Fox Foundation. I’m on the patient council so one woman contacted me about wanting to talk to another woman, and she sought me out and through that we developed the women’s group.

Question: How do I explain to others who matter to me my husband’s apathy towards my attempts for my own social life?

Answer (Indu Subramanian): Apathy is tremendously distressing, and when you have a family circle and you’re used together, and a person is totally withdrawn and looks bored, and it may be embarrassing. It’s important for people to realize as part of Parkinson’s is a lack of facial expression, and apathy is part of the disease so they shouldn’t take it personally. Additionally, getting breaks for yourself is important as a caregiver. If people are giving you a hard time for trying to get out and get a break and socialize, you should do it for your own well-being and wellness and they shouldn’t take it personally if the other person (the person living with PD) does not seem to be interacting. It’s important to make efforts every day to try to do something on the calendar because often patients with apathy say it’s hard to get started but once they start they enjoy it. 

Question: How to deal with isolation while not being able to publicly disclose my diagnosis at work?

Answer (Lance Wilson): That is quite common. I’d recommend connecting with people on things that have nothing to do with your diagnosis. If you need certain adaptive things to be done that is fine, but remember that you are a person with Parkinson’s, not Parkinson’s in its entirety.     

Question: How to manage being embarrassed about your diagnosis and how can you gain confidence in going out with PD?

Answer (Ned Neuhaus): I was terrified of letting anyone know. What I found that worked well for me was to take baby steps. I went to a support group, a safe zone. I met people there who I could talk about PD with and get over that in a friendly environment. You could go to a Rock Steady boxing class and make it clear that you are not public with your diagnosis, and you have people there to protect you. You don’t have to make a public post on Facebook, take small steps. Once you get positive reinforcement from people it gets easier and easier to tell