The World Parkinson Coalition (WPC) hosted a session in early December 2020 for care partners of people with Parkinson’s disease (PD). In this combined presentation, panel discussion, and question and answer session, four speakers talked about creative, non-medical approaches to managing care partner wellness as they support their person with Parkinson’s (PWP). The panelists included a movement disorder specialist, a social worker, a person with Parkinson’s, and his care partner.
Here are the key takeaway points from each of the panelists:
- Silke (movement disorder specialist) – Find your personal way to look after your spiritual, emotional, physical, and social health and make it a priority.
- Lissa (social worker) – PD care partners need to pace themselves over the course of the illness. They need to balance their needs with those of the person with Parkinson’s. It is like running a marathon and the goal is to have the care partner cross the finish line with preserved emotional and physical wellbeing.
- Leslie (care partner) – Take things one day at a time, because sometimes looking at the whole big picture can be overwhelming. I have a favorite quote by Professor Joseph Campbell: “We must let go of the life we have planned, so as to accept the one that is waiting for us.”
- Steve (person with Parkinson’s disease) – Care partnering is a two-way street. We need to take care of those caring for us!
This session was recorded and is on the WPC website.
I listened to this panel discussion and am sharing my notes below.
For additional Parkinson’s disease caregiver resources, see this Stanford Parkinson’s Community Outreach webpage.
– August Besser
“Wellness: Approaches Beyond Medication” – Session Notes
Conference Host: World Parkinson Coalition (WPC)
Conference date: December 9, 2020
Summary by August Besser, Stanford Parkinson’s Community Outreach
This session included 4 panelists and the moderator:
- Silke Cresswell, MD, movement disorder specialist, University of British Columbia
- Lissa Kapust, social worker, Beth Israel Deaconess Medical Center
- Steve Peters, diagnosed with Parkinson’s disease in 2013
- Leslie Peters, care partner to Steve Peters
- Moderator: Julie Carter, RN, retired movement disorder specialist, Oregon Health & Science University
The Movement Disorder Specialist: Silke Cresswell, MD
- It is crucial that care partners make their own wellness top priority. This can most easily be accomplished through lifestyle and behavioral choices.
- Have a Plan – making your wellbeing a priority requires a conscious decision. Make your wellness plan specific, easy, and as pleasurable as possible by including things you enjoy, involving someone else, or making yourself accountable in some way.
- Exercise – it is difficult to overstate the positive impact exercise has on overall wellness, especially regarding heart health, diabetes risk, bone density, and brain health. Research shows that it may even reduce cognitive decline.
- Nutrition – Creating healthy eating habits can help manage and prevent inflammation and the disease related to it. Research tells us that the Mediterranean diet can prevent neurological conditions and delay PD by ten or more years. Changes in eating habits are best accomplished when done over time and one small step at a time.
- Mindfulness & Spiritual Health – It can reduce stress, improve emotional health, and increase enjoyment of daily activities.
- Cognitive Pursuits – Learning new things and staying engaged increases emotional wellbeing, challenges your brain, and improves its malleability over time.
- Music – Incorporating music into your life can improve wellness and brain health. It can also increase enthusiasm for exercise and other healthy activities.
- Social Connection – Remaining engaged in a community is proven to be necessary to overall happiness, but it also improve survival rates.
- Address Medical and Mental Health Needs – Health outcomes and overall wellness are improved if care partners address their medical issues early. This includes common mental health issues (depression, anxiety, etc.), which may benefit from intervention.
- “There are powerful reasons why you need to make your own wellness an absolute priority. It’s a necessity, not a luxury.”
The Parkinson’s Educator: Lissa Kapust
- Self-care, self-awareness, and proper pacing are critical for care partners, who essentially are running a Parkinson’s marathon. Before establishing a wellness plan, consider your personality, lifestyle, and preferences, then set yourself up to succeed.
- Understand that taking care of yourself means considering your medical, emotional, social, and spiritual needs. Take time to do things that feed your soul and to seek out supportive resources.
- Parkinson’s creates an environment of constant change and uncertainty. Naming and facing challenges can be a powerful step in your own wellness. Embrace things you can control, including being easy with yourself, focusing on what you are grateful for, and acknowledging the lessons found within the challenges.
It’s critical to address common issues related to care partner wellness and safety:
- Establishing and maintaining a strong relationship with their person with Parkinson’s care team
- Making decisions regarding when a PWP should stop driving (check your local resources for driving assessment programs)
- Deciding when to move to a more Parkinson’s-friendly home
- Fall prevention
- Practicing self-compassion
- “This is not the time for perfection. Some days you will struggle more than others.”
The Care Partner: Leslie Peters
- Leslie recommends having a strategy around maintaining wellness and ways to stay motivated within it.
- Find Your Support System – Remember you are not alone. Seek out local organizations and a community of people who can help when you need it. This offers support and community, and it minimizes the feelings of isolation that care partnering often involve.
- Take Care of Yourself – Make positive choices regarding your physical wellbeing, use mindfulness tools or meditation, and make time for something you love, even for short periods of time.
- Take It One Day at a Time – Sometimes looking at the big picture can be overwhelming. Staying in the present as much as possible can manage stress and expectations, as well as help maintain a positive attitude.
- Maintain Good Communication – Maintaining healthy habits will help the relationship and increase overall wellness for you both. Keep the lines open and be patient.
- Stay Proactive – Remaining informed and educated about Parkinson’s helps care partners take better care of their person with Parkinson’s, and it ensures you are taking advantage of available resources. Encourage intervention when necessary, even when your PWP – or you – are resistant.
Person with Parkinson’s: Steve Peters
- Steve emphasized to people with Parkinson’s that having a care partner means that you are in a relationship of mutual support. PWPs have a responsibility to help maintain their care partner’s wellness, especially since they are taking on more responsibility and a bigger practical load. Here are some ways he maintains wellness and a positive attitude:
- Give Yourself a Goal – Whether physical or otherwise, have something to look forward to.
- Find Gratitude – Focus on what you have and can do as much as possible.
- Stay Active – Find something you love to do and make it a priority. When you hit a wall or get bored with your routine, be easy with yourself and consider taking a break or adapting the activity.
Question and Answer
Question: Lissa, how do you prepare for and create the happiest outcomes as we approach and experience a new normal in Parkinson’s disease?
Answer by Lissa: There are multiple perspectives on this. If you just concentrate on crossing the finish line, that might not be the real goal. Just like running a marathon, you have to appreciate things along the way. I guess the question is, “how can you be in the moment”? Sometimes, I’ll say to a care partner that I’m working with or a person with Parkinson’s, “how can you make today the very best day that you can”? This is what you have in front of you. I think that you have Parkinson’s disease at the core, but around the corner you have edges that are malleable, and we can shape and influence those. That particular day, trying to think about how you celebrate the moments that you’ve got to celebrate. I think the COVID pandemic has added get a whole other layer that puts us all in such a state of uncertainty. Care partners often don’t know day-to-day or hour-to-hour how things will go. In today’s pandemic, it’s so difficult to make a decision and make a plan.
Question: Dr. Cresswell, what kind of advice would you have for care partners in motivation and motivating themselves/being motivated by others?
Answer by Dr. Cresswell: Make it a team approach. Find a tribe, who are in a similar situation, and so you have the support of the community and live in a culture where this is what everybody does. Where you can check in with each other, wear down the exercise goals for the day. Make it easy. Reduce any stress that might be there, and making it as fun as possible. Make it attainable. Rather than just starting with a marathon, make it 10 minutes of exercise. Find something that you like, and bundle it together with an exercise. For example, if you like a cup of tea, before you have a cup of tea go for a 10-minute walk. Bundling things together combines both aspects of something you have to do and something you want to do.
Key Takeaway Points
- Silke – Find your personal way to look after your spiritual, emotional, physical, and social health and make it a priority.
- Lissa – PD care partners need to pace themselves over the course of the illness. They need to balance their needs with those of the person with Parkinson’s. It is like running a marathon and the goal is to have the care partner cross the finish line with preserved emotional and physical wellbeing.
- Leslie – Take things one day at a time, because sometimes looking at the whole big picture can be overwhelming. I have a favorite quote by Professor Joseph Campbell: “We must let go of the life we have planned, so as to accept the one that is waiting for us.”
- Steve – Care partnering is a two-way street. We need to take care of those caring for us!