In early June, the Parkinson’s Foundation hosted a webinar on wellness and remote care for people with Parkinson’s disease (PD) during the coronavirus pandemic, featuring a panel of movement disorders specialists. They discussed how to maintain wellness in the face of the challenges presented by Covid-19, and how to access care going forward. We at Stanford Parkinson’s Community Outreach viewed the webinar and are sharing our notes.
The speakers on the panel included:
- Nicholas Galifianakis, MD – Movement disorders specialist at UCSF and the San Francisco VA Parkinson’s Clinic
- Caroline Racine Belkoura, PhD – Neuropsychologist
- Rafael Zuzuarregui, MD – Movement disorders and sleep medicine specialist at UCSF Fresno
- Yasmeen Gonzalez – Practice manager
This webinar was recorded and can be viewed here.
If you have questions about the webinar, you can contact the Parkinson’s Foundation at 800-4PD-INFO (473-4636) or email firstname.lastname@example.org in English or Spanish.
A list of resources to help you through Covid-19 restrictions, including links for emotional support, mindfulness, exercise, cultural activities, and more.
For additional resources on online options during Covid-19, see the American Parkinson’s Disease Association web page of helpful links.
Now… on to our notes from the webinar.
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Wellness and remote care in PD during Covid-19 – Webinar notes
Presented by the Parkinson’s Foundation
June 5, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach
Over the last few months, we have all experienced rapid, unprecedented changes in all aspects of society due to the Covid-19 pandemic. Shelter-in-place orders meant most health centers closed all non-urgent clinics, and some medical practices shuttered entirely, without a means for patients to get prescription refills or answers to questions. This caused a lot of additional stress for some individuals during an already difficult time.
What can we do now? Most of us are still stuck inside, experiencing difficulty getting groceries and medications. With less access to sunshine, exercise, and social interactions, many are experiencing heightened stress, fear, anxiety, disturbed sleep, and disrupted routines.
Dr. Caroline Racine Belkoura discussed how to maintain wellness in the face of these challenges. Dr. Nick Galifianakis, Dr. Rafael Zuzuarregui, and Yasmeen Gonzalez spoke on telemedicine and referrals going forward.
Dr. Racine described how the uncertainty during the Covid-19 pandemic has created enormous stress and anxiety. Our brain really likes to know what to expect and what will happen, but the situation has really robbed us of this, switching our brain into “stress” mode. When the stress becomes chronic, lasting days, weeks, or months, this is quite unhealthy for our brains and bodies, exposing us to high levels of cortisol. This can cause brain dysfunction even in those without a neurologic diagnosis. Extended periods of stress lead to burnout: significant depression, apathy, and fatigue. We want to try to address these feelings of chronic stress in order to be able to live healthfully during this extended pandemic.
- Maintain a routine (particularly around medications)
- Make time for exercise, social connection, and enjoyable activities
- Minimize time consuming the news
- Get good sleep
- Maximize brain function
- Support your loved ones
- Cultivate happiness, practice gratitude, keep perspective
- Stop and breathe!
It can be overwhelming to try to incorporate ALL of these tips into your life; try picking 3 tips that particularly resonate for you, and find a way to work them into your day.
Routines are soothing for our brain and help to minimize the memory/attention needed for basic tasks. None of our brains are functioning at 100% right now! A routine takes some of the burden off needing to remember as much. Consider changing out of pajamas into other comfy clothes. Stay on your usual medication schedule and use reminders for yourself if need be.
Once you have a basic routine in place, you can try to build in new skills – such as exercise – by adding them onto the existing framework of your routine, rather than creating a whole new routine from scratch. If possible, try to get outside every day; fresh air and sunshine are very beneficial for mental health and for maintaining a healthy sleep cycle. Make sure to include activities in your routine that you enjoy; you can schedule these as a reward for completing other tasks you don’t enjoy as much.
Exercise is essential, aiding with stress reduction, sleep, thinking, and motor function. Think of it as an additional treatment you need to take. Aim for 15-30 minutes of exercise per day, though if you are not exercising regularly, it is best to work up to that goal more gradually. For instance, you could start with an easy 5-minute walk each day. Schedule your exercise during your usual “on” times when you are feeling your best.
There are many online videos available for people with PD; see this list for many options.
For information about online exercise classes led by Lisa Oei, Bay Area Doctor of Physical Therapy, please visit here.
Find enjoyable music or a podcast to listen to while exercising, and recruit a friend or loved one to exercise with you, even just virtually!
Social connection is very beneficial; aim to connect with at least one person every day by phone or video. Move your social group online via FaceTime, Zoom, or Google Hangout, and seek out online groups for PD, such as PD Conversations and Health at Home. It can be a good time to try to reconnect with old friends and check in on neighbors, friends, and other loved ones. Write a postcard or letter; it can be meaningful to send and receive physical tokens while we are all isolated. Lastly, try not to be shy about reaching out for help if you need it! There is a detailed list of support services available in the Google Doc shared above.
Enjoyable activities are an important way to build some joy and relaxation into your day. If you find you are not getting enough time for these activities, consider scheduling them into your daily routine to make sure they happen. Choosing a theme for your month – i.e. “I’m going to focus on learning about history in August” – can help structure your interests.
- Listen: podcasts, music, audiobooks
- Watch: Opera, jazz, theater, dance, movies
- Make: Art, food, craft projects, gardening
- Read: E-books ordered online, books delivered to your door, library books through Libby
- Learn: Many free online platforms, such as TED Talks or language apps
- Play: Games, music, laugh, call grandkids, play with pets
How you handle news and social media is a very challenging area right now. Some choose either extreme: cutting out all news, or consuming all news stories constantly throughout the day. It’s important to find the balance that works for you, between feeling informed about the most important information and making sure that you aren’t heightening your anxiety and distress by consuming news constantly.
Some helpful suggestions:
- Pick 1-2 reliable sources of information and primarily get your news there.
- Allow 10-15 minutes in the morning and at night to check what is going on.
- Set limits with family and friends.
- Consume “good” news too (Upworthy, Good News Network).
- Use single-purpose devices, such as Kindle, to reduce the temptation to browse.
- Delete apps off of your phone if you can’t limit your behavior.
Sleep is another challenge for many of us right now, particularly for those with PD. Dr. Racine’s recommendations are:
- No news 1-2 hours before bed. Avoid watching TV that is too exciting or tense.
- Make a to-do list and plan for the following day before you go to bed.
- Limit naps to 30-45 minutes only, and finish napping by 2pm.
- During the night, if you are awake for more than 20 minutes, get up and find a quiet area to read or relax in (no screen devices!). Return to bed when you start to feel sleepy.
- Progressive muscle relaxation while you lay in bed.
- Limit fluids in the evening to avoid having to get up to urinate multiple times during the night.
Maximize your brain function – none of us are functioning at 100% right now! Minimize distractions and do the hardest tasks at your “best” time of day. Break tasks down into smaller pieces and tackle one at a time. Plan in advance as much as you are able, and set reasonable (reduced) expectations. Allow yourself to take rest breaks as needed. Using post-its and lists to keep track of information “offline” can reduce your reliance on your phone, which can enable distractions. Lastly, keep routines for your most important items and tasks.
Caregiver support is really important now; for many, additional sources of help have been taken away during the pandemic. Strategies for caregivers to try to maintain wellness:
- Do something enjoyable for yourself daily (30-60 minutes).
- Connect with your support system, such as friends and family.
- Connect with other caregivers via a Zoom support group meeting.
- Accept help when offered; request specific tasks/chores that would be useful, such as grocery shopping.
- Monitor your own stress level and take more breaks if needed.
- Be gentle with yourself and the loved one you are caring for.
- Consider a contingency plan if you become ill – who could take care of your loved one?
Gratitude exercises have been found to be associated with happiness. Try spending a few minutes towards the beginning or end of every day to reflect:
- What went well today and why?
- Tell someone “thank you” and why you are grateful for them.
- Think about 5 things you are grateful for.
- Take a walk focusing on the beauty around you.
- Commit to a day (or a few hours) without complaining.
Keep perspective as much as possible by focusing on one day at a time, and on things you can control, letting go of things we can’t control. There is no one “right way” to cope.
Mindfulness is a practice of paying attention in the moment, on purpose, to enjoy the little moments: a bird visiting outside the window, or a neighbor’s beautiful flowers blooming.
When your emotions start to feel intense or overwhelming, think of a STOP sign in your mind: observe what is happening without judgment of yourself, take a breath, and try to proceed with your day.
- It’s a journey, not a sprint.
- Put on your oxygen mask before helping others.
- Surround yourself with positivity and gratitude. Set boundaries with those who are contributing to your stress.
- Guilt, perfectionism, and blaming yourself/others is not helpful now.
- We are more powerful together than apart. How can you connect?
Going forward: Telehealth
The next segment in the presentation described services offered at the UCSF Movement Disorders Clinic and the process for new referrals. This summary focuses on their general tips and guidelines for accessing telehealth services, wherever you get your care for your Parkinson’s disease.
Before your Zoom telehealth appointment:
- You will need a smartphone, smart tablet, or computer with video
- Download the Zoom application to your advice and create a Zoom account if needed
- Make sure you and your caregiver are available a few minutes before your appointment time.
- Wear a short sleeve shirt and shorts, so the provider can see your limbs clearly.
- Make sure you are in an area of your home with space for you to move around and perform certain tasks as part of the exam.
Getting the most out of the appointment:
- Write down your questions ahead of time and have a list of your medications on hand.
- Try to position your device close to the internet router, to get the best internet connection possible.
- The device should be propped up so you are visible in the camera. Ideally, you should be able to move the device/camera to give the provider a view of your feet, for example.
- Sit in front of a solid-colored wall, if possible. Try to decrease visual clutter so the provider can see you clearly.
- Position a light in front or to the side so that your face isn’t in shadow.
- Turn off any background noise if possible, such as a radio or TV in the background.
- If you have noisy pets, such as dogs that bark, put them in another room for the duration of the appointment.
- Sometimes there may be a medical trainee – a student or resident – joining the visit as well.
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Question & Answer Session
Q: We previously relied on home health services regularly, but these have been put on hiatus due to the pandemic. Where do we go from here?
A: Unfortunately, this kind of issue is quite common right now, and the possible solutions are very much on a case-by-case basis depending your insurance, specific needs, and county of residence. Speaking with a social worker if there is one affiliated with the neurology clinic you go to can be very helpful to learn what options you may have.
Q: Regarding sleep, do you recommend avoiding blue light to help with sleep?
A: The idea behind concerns about “blue light” is that there are different frequencies at which we see light, and that our electronic devices emit blue light that may “wake up” our brain and possibly shift our sleep rhythm. This is partly why we recommend getting outside and exposed to sunlight early in the day, to reinforce your sleep/wake cycle. There are eyeglasses one can buy on Amazon that purport to filter out blue light, but we don’t know how effective these actually are. However, many of our devices, such as iPhones, have settings you can deploy at a certain time each day to filter out this blue light.
Q: I’m hearing a lot about shortages of certain medications; have you heard about any shortages of PD medications? Should I try to get a 90-day supply?
A: Most of the medication shortages are related to anti-inflammatory medications and other drugs that have been rumored to help with Covid-19; the panelists have not heard of any shortages of PD meds. Typically, if there are temporary shortages of one form of levodopa – such as long-acting Sinemet – we can work around this with other forms of levodopa. That said, a 90-day supply of your PD medication is sometimes possible. You’ll need to check with your prescribing doctor and the pharmacy to see if your insurance will permit it.
Q: Are people with PD immunocompromised, and are they more prone to lung issues? I’ve heard conflicting info about this.
A: It’s tricky to answer these questions; age certainly seems to be a risk factor, and many people with PD tend to be older. But lots of PD patients who are elderly are still in excellent health. Dr. Galifianakis does not think of his patients with PD as immunocompromised. Dr. Zuzuarregui agreed and added that there doesn’t seem to be any reason why the lungs of those with PD would be more susceptible to catching Covid-19. Frailty – poor general physical health – is certainly a risk factor experiencing complications if one does contract the virus.
Q: Many of us with PD experience pain. Do you think it’s safe to take ibuprofen, given the concerns that it might worsen Covid-19 infection?
A: This is also tricky to answer; the panelists have not been advised to stop their patients from using ibuprofen. Most of the information available is anecdotal and inconclusive. You definitely don’t want to take excessive amounts of ibuprofen since it can damage your kidneys and stomach, but we don’t currently have information that warrants stopping ibuprofen altogether if you rely on it for pain management. Tylenol (acetaminophen) is also a good alternative.
Q: What about insurance coverage for telehealth?
A: A lot of insurance companies are providing more coverage for telehealth services now. In general, as long as they would cover the follow-up visit that the telehealth appointment is substituting for, then usually the telehealth appointment is covered. It’s always a good idea to check with your specific insurance provider beforehand, since things have changed a lot over the past few months.