Your Guide to the Holidays with Parkinson’s
Every year, Parkinson’s Foundation Helpline specialists receive calls from people with Parkinson’s disease (PD) and their loved ones looking for advice when it comes to navigating the holidays. So, we put our specialists’ top recommendations in this article.
From not knowing how to explain PD to grandchildren, to feeling insecure that family will notice worsening symptoms and the exhaustion that can accompany travel, the holidays can be overwhelming. By thinking ahead about possible stressors, this article is designed to help you plan and prepare to enjoy your holiday season while best managing PD symptoms.
1. Preparing to see family you haven’t seen in a while.
The holidays can be a time when extended family gets together. What if your symptoms have changed since the last time you saw these family members?
Before you see family consider providing them a primer to Parkinson’s — sending them a link in the family chat or email to our What is Parkinson’s page. Early on in your holiday get-together, consider speaking about Parkinson’s for a few minutes to help them understand how you are doing, establishing expectations and setting limits on what works for you.
It can be helpful to come up with a few short sentence scripts prior to these meetings. That way you can practice what you want to say and get the most important information across. An example could be, “Since last seeing you my Parkinson’s symptoms have picked up. My hand shakes more and I walk a little slower. Taking my medicine on time helps me feel my best. Unless I ask for extra help, please treat me as you would anyone else.”
Articles to share with family members: 10 Ways to Support a Loved One with Parkinson’s, What is Parkinson’s
2. Managing Parkinson’s medications when traveling.
What should you know about traveling with Parkinson’s medications?
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Carry all medications in their original bottles, with the name of the drug and your doctor’s name on the label.
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Continue to take medications on time, every time, even if changing time zones
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Bring a copy of your prescriptions (generic and non-generic names) and medication regimen, including your physician’s name and contact information. This printable medication schedule can help.
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Keep all your medications, for your entire trip, with you in your carry-on bag; include snacks, water or juice to take with medications.
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If possible, pack extra medication in case you are delayed.
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Set timers to help you remember to take your medication.
Consider bringing or printing a Hospital Safety Guide with you when traveling. If you do not have one, order or download the guide and its printable components online in the planning stage of your trip.
Learn More: Episode 136: Traveling with Parkinson’s Disease
3. Parkinson’s Travel Tips
How can you make traveling with Parkinson’s easier? Whether you’re driving, flying or taking that dream cruise this holiday season, we’ve gathered helpful tips in our Traveling with Parkinson’s below. Read this refresher to help you prepare for all aspects of your upcoming trip.
General travel tips:
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Plan to rest the day before your trip and the day you arrive.
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Add a name label to assistive equipment, such as a walker, cane or walking stick, before packing.
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Give yourself extra time for everything.
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Days before a flight, request wheelchair or electric cart service within terminals if necessary. Your bags will be handled too.
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For cruises and theme parks, call ahead to rent assistive devices, such as a scooter.
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For hotels, call ahead to request an accessible room, or a room near the elevator.
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Don’t be afraid to ask for help.
Stick to your routine. It’s easy to get caught up in the excitement of the holidays but try to keep to your daily routine. Follow your usual medication times, mealtimes, exercise routine and sleep schedule.
Learn More: Traveling with Parkinson's
4. Talking to children and grandchildren about Parkinson’s.
Drawing on the experiences of many PD families, children and grandchildren can have a wide-swinging variety feelings about their parent or grandparent having Parkinson’s. The information you choose to share will likely change as they mature and are able to understand more aspects of Parkinson’s.
The good news is that children often adjust well to a loved one’s diagnosis of PD. Giving children a better understanding of Parkinson's can lessen their fear and anxiety about the disease. When you see children at a family gathering, consider:
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Talking to them for a few minutes, providing them with general information about Parkinson’s. For instance, you can share that Parkinson’s is a disease that makes it harder for your body to move, and they notice your symptoms. Share what you do to manage them.
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Using language that is understandable and concrete to your child.
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Finding a way to allow the child to help and be involved. For instance, they can get you water, help you exercise your brain by playing a game or go on a walk with you.
Learn More: Parkinson's Q&A: How do I talk to my children about Parkinson's?
5. Protect your mental health — and move your body.
Depression and anxiety can be symptoms of Parkinson’s. Prioritize and protect your mental health when traveling. That means taking time for yourself. Rest, read, take your grandchild to the movies, visit a local coffee ship — whatever helps you wind down.
It’s not easy to exercise when traveling but try to stick to your exercise routine as best as possible. Exercise is essential to managing Parkinson’s symptoms and mental health. Keep moving during the holidays. Whether it’s a short walk after a meal or asking your favorite family member to join you for a Fitness Friday on-demand virtual exercise class, staying active can help ease stiffness and improve your mood.
Exercise and movement can be great for the whole family especially during the holidays! Consider including your family in your exercise routine. Ask your grandkids to go on a walk with you, sign the family up for a boxing class or schedule a time for a virtual exercise class with all family members that are interested.
Learn More: Mindfulness Mondays guided meditation videos and Fitness Friday exercise videos
6. Setting up better two-way communication.
About 75% of people with Parkinson’s experience changes in speech and voice. People with Parkinson’s might struggle in a big group discussion, with following along, being heard or needing extra time to answer.
Tips to help you communicate with your family:
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Drink plenty of water or other liquids each day (non-caffeine and non-alcoholic).
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Do not strain your voice by shouting over loud noise when you talk.
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Rest your voice when it is tired. Like other muscles in your body, the muscles controlling your speech need a break sometimes.
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Reduce throat clearing or coughing.
Tips for family and friends:
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Have important or more challenging conversations when the person with PD is well-rested and at their ‘best’ time of day.
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Minimize talking ‘for’ the person with PD or filling in their responses unless they ask you to do so.
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Reduce background noise when having a conversation. Turn off the radio and TV and shut doors to noisy areas.
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Be aware that people with PD may not accurately express their emotions through facial expressions because of facial masking.
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Be patient. Allow ample time for the person with PD to communicate.
Additional resources: Alleviating Voice Challenges with PD and What Can I Do to Improve My Speech and Communication?
7. Ask for help when you need it.
Finally, don’t hesitate to ask for help. Whether it’s asking family member to go on a pharmacy run for you, making you tea or calling a friend from your support group to simply confide in someone about how you’re feeling — your support system is there to help lighten the load.
Learn More: Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) and explore our Resources and Support page.
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