Last week, the American Parkinson Disease Association’s Connecticut chapter (APDA CT) hosted a webinar on psychosocial strategies for the holidays with social worker Jennifer Lambert. Parkinson’s disease (PD) can present new and different challenges during the holidays as there is a change in people and activities as compared to the daily routine. The speaker provided some strategies for coping during the holiday season as a person with PD or a caregiver.
Ms. Lambert’s strategies include:
- Do a self assessment before engaging in different activities
- Have a plan that is detailed and focuses on what is most valued
- Pass the torch to children or grandchildren for traditions that are now not possible if done alone
- Set limits to fully enjoy what you are doing
- Practice saying “no”
- Maintain a wellness routine and be mindful to take your medication at the right time
- Add self-care and practice gratitude
- Communicate your needs and be specific
For more information on families and PD, please see this Stanford Parkinson’s Community Outreach webpage
A recording of this webinar will soon be available at this APDA CT chapter webpage
See my notes below of the December 2nd webinar.
– Joëlle Kuehn
“Psychosocial Strategies Over the Holidays” – Webinar Notes
Speaker: Jennifer Lambert, LCSW, social worker, Chase Family Movement Disorder Center, Mystic, CT
Webinar Host: American Parkinson Disease Association Connecticut Chapter
Webinar Date: December 2, 2021
Summary by: Joëlle Kuehn, Stanford Parkinson’s Community Outreach
Important to come up with a good plan for the holidays, and give yourself time to prepare.
Do a self-assessment:
- Think about yourself honestly
- What is my energy level?
- What is the best time of day? The worst?
- How long can I stand? Walk?
- In what situations is it easy to communicate? What makes it hard?
- What are other factors that might affect my enjoying the holidays – hearing or vision impairment, IBS, etc.?
- What may affect overall wellness?
- What other limitations are you managing?
- What are the most important things about the holiday season to you?
- No right answer, but that is what should stay on your schedule
- A meal?
- Religious service?
- Finding the perfect gift?
- Sharing the season through volunteering?
Have a plan:
- Having PD doesn’t mean you have to give up holiday celebrations
- Plan extensively and early
- Be flexible
- Good plans are detailed
- When and for how long?
- Indoors or outdoors?
- A few close friends or a big, loud party?
- Familiar or unfamiliar environment?
- What’s the food situation? The bathroom?
- How can we make this successful?
- What you value most
- Look for a reasonable substitute if what you did before is no longer feasible
- Instead on hosting a big meal, consider catering it, or do a potluck, or just do pre-made desserts
- Pass on the torch. If you have always cut down the tree and dragged it in, or put up the yard decorations, might be the year to have your kids or grandkids do it
- Look at different ways to set limits to fully enjoy what you are doing
- Follow the plan
- If you agree to bring one type of cookies, even if you feel good after making the first one, don’t start the dough for others
- It is a marathon, not a sprint. Pace yourself to the new pace
- Avoid putting pressure on yourself or “pushing through”
- Only do what is doable so that you have enough energy when you go home to do other things
- Saying “no” is planning for success instead of defeat
- Practice saying “no”
- Sometimes saying “no” is hard
- Ex. if your kids are expecting you to host, and there will be a lot of noise, and you know that with your PD, it’ll be too much and be overwhelming, practice working the script of what you are going to say. Suggest alternatives
- Set limits – don’t build walls
- Don’t say no all the time, still try to keep going and be around people
- The more you do, the better you feel
- Try to be able to say “yes” AND be able to say “no”
- Apathy may prevent you from wanting to do anything, or be indifferent about situations, but try to ensure you do something and say yes may be the best thing for you
- Setting limits can look like different things:
- Only attending certain events
- Maybe not running or hosting the event. In comparison only participate
- Limit how much you are participating. Know when you need to step out
Maintain a wellness routine
- Exercise daily
- Eat well. You can still eat special treat, but eating a healthy diet is important to be well mentally and physically during the holiday season
- Take your medication at the right times
- Prioritize sleep including naps. Maintain sleep schedule
- Minimize / avoid alcohol. It can negatively impact medication and increase fall risk
- Holiday HALT – don’t want to get to any of these four things
- Take moments during the day to check in with yourself if you are feeling any of the four things. Use that moment to decide how to get your day back on track
- H: Hungry
- A: Angry
- L: Lonely
- T: Tired
There is no vacation from your wellness routine! Keep it up!
- Add self-care, take care of yourself a bit more because the holidays can be more stressful.
- Holidays can be taxing
- In a season of giving, this is when you can be selfish and when it’s ok
- Self-care is anything that recharges your batteries mentally or physically
- Practice gratitude. Example – every day before you go to bed, write down three things you are grateful for
- Do things you enjoy, reading, hobbies, meditation, etc.
- If you are going anywhere with multiple people, communication is key to making everything go smoothly
- Ask what you need in advance
- Be specific. Examples –
- Say: “I have been struggling with fatigue lately and will only be able to spend an hour at the house”
- Instead of: “I am only staying an hour”
- Be vulnerable
- Be brave. If you are in the choir, and can’t stand the whole Christmas service, ask for a chair even if you are the only one sitting
- Assume people are reasonable and kind
- People are more than happy to help you be successful at the holidays
- Ask yourself: if someone said this to me, how would I respond? Many times people don’t give the same kindness to themselves that they do to others
- Most people are reasonable, but know who isn’t reasonable, and hold your boundaries with them
- Do other people even know about your PD?
- Big family meal is probably not the right time
- Be aware of how you feel about telling people
- Think of the pros and cons of telling folks beforehand
- Benefit of telling them
- Disadvantage of telling them right now
- Stages of telling people – who do I tell?, who do I tell first?
- Stages of telling people: how much do I say?
- You don’t have to tell people everything they are curious about, you are in control of how much information you want to reveal
- Telling kids – finding developmentally appropriate explanations
- Ex: “I have a disease called Parkinson’s. Part of my brain isn’t working right so it makes my hand shake / makes me walk slowly / makes my voice really soft. I take medication which helps.”
- APDA booklet to help
- If there are communication issues with PD, let them know it might take you a minute to respond but you will
- Give permission to ask questions. Answer as appropriate
- Enlist them to help you
- Sometimes it’s less stress to disclose the diagnosis than to keep it a secret
Question & Answer:
Question: How do you handle the emotions if you feel like you can’t do something?
Answer: Emotions are good, they are our warning sides, but sometimes they become too much. You can get anxiety or fear if issues come up and it can box us in. Remind yourself that it is an emotion, and isn’t necessarily true. Try to think of it factually, use facts rather than emotions. Think about “what is the worst thing that could happen if I try it and it doesn’t work out?”. Is it still ok? Oftentimes the worst case scenario isn’t as bad as we imagine it. Logically ask yourself if you can feasibly do this. If the answer is yes, try it and use your coping skills.
Question: Strategies for having to give up driving?
Answer: Depending on where you are, try to figure out different resources, because it is important to keep going out and being independent. Could a community service center help out? During the holiday season, ask if someone can come get you.