In a recent webinar hosted by the American Parkinson Disease Association (APDA), occupational therapist Monika Lukasiewicz, OTR/L, offered a practical and hopeful perspective on fatigue as a Parkinson’s symptom. She framed the conversation not around the limitations of fatigue, but around the possibilities of creative adaptation. The core message was empowering: by using the principles of occupational therapy, we can find personalized ways to continue living a full and meaningful life. Read on for a few highlights and detailed webinar notes.
For many living with Parkinson’s disease, fatigue is a challenging non-motor symptom. It’s not just feeling tired after a long day; it’s a profound, deep exhaustion that rest doesn’t seem to fix. This can make it difficult to engage in the activities and hobbies that bring life meaning and joy.
The First Step: Rule Out Other Causes
Before assuming fatigue is solely a symptom of Parkinson’s, Ms. Lukasiewicz stressed the importance of working with your healthcare team to investigate other potential factors. Addressing these common issues can sometimes lead to a significant boost in energy levels. Ask your doctor about:
- Depression: It can manifest in ways that are easy to overlook.
- Poor Sleep: A major and direct cause of fatigue.
- Diet and Dehydration: Nutritional deficiencies or simply not drinking enough water can drain your energy.
- Medication Side Effects: Review your current medications with your provider to see if fatigue is a known side effect.
Practical Strategies You Can Use Today
Occupational therapy is all about problem-solving to help you do the things that are most important to you, what OTs call your “occupations.” Here are some of the key strategies discussed in the webinar that you can start using right away:
- Save Your Energy for What Matters (Energy Conservation): This is a cornerstone of OT. Identify the activities you value most and find ways to simplify the tasks surrounding them. If you love to cook but it’s exhausting, focus on making just one special meal a day, get your groceries delivered, or buy pre-cut vegetables to save your energy for the creative part you enjoy.
- Improve Your Sleep Habits (Sleep Hygiene): Being well-rested is fundamental. You can improve your “sleep hygiene” by creating a consistent routine. Try going to bed and waking up around the same time each day, cutting off caffeine before noon, and creating a dark, cool, and quiet sleep environment.
- Find New Ways to Do What You Love (Adaptation): If fatigue is preventing you from doing something you enjoy, it’s time to get creative. If playing with your grandchildren is tiring, plan shorter, more structured activities like reading a book together. If a trip to the farmer’s market feels overwhelming, perhaps just visit one or two of your favorite vendors, or ask if they can prepare your order for a quick pickup.
Fatigue in Parkinson’s is complex, but you don’t have to manage it alone. An occupational therapist is a trained problem-solver who can provide a personalized assessment and work with you to find solutions that fit your unique life. Don’t hesitate to ask your neurologist for a referral.
To learn more from Monika Lukasiewicz, OTR/L, you can watch the full webinar on the APDA YouTube Channel.
Here are my full notes on the webinar:
– Elizabeth
“Living Well with Parkinson’s and Fatigue”
Speaker: Monika Lukasiewicz, OTR/L, Occupational Therapist, Dementia Capable Care Specialist & Trainer, COPE Program certified, private practice based in Mesa, Arizona
Webinar Host: APDA (American Parkinson Disease Association). Part of the “Thriving Through Occupational Therapy” series.
Webinar Date: August 7, 2025
Summary by: Elizabeth Wong, Stanford Parkinson’s Community Outreach
Fatigue in Parkinson’s Disease
Fatigue is a common non-motor (non-movement) symptom in Parkinson’s disease. It is often described as a feeling of deep tiredness that is not resolved with rest or sleep. It can also present as mental fatigue, making it difficult to concentrate. This can lead to a more sedentary lifestyle, declining social plans, and difficulty with daily activities like getting dressed.
If you are unsure if you are experiencing fatigue, it is important to speak with your healthcare provider team, including your neurologist.
The Role of Occupational Therapy (OT)
A team approach to managing Parkinson’s leads to the best long-term outcomes, and an occupational therapist (OT) can be a key member of that team.
The perspective of OT is not to focus on the disease, but on the person and their desire to engage in their own unique life experiences and meaningful activities (or “occupations”). OTs are trained to analyze activities and problem-solve how to match a person to the life they want to live, while honestly accounting for barriers like fatigue.
If you do not have an OT on your team, you can ask your neurologist or primary care provider for a referral. You can also search for local OTs on websites like OTpotential (otpotential.com/). The process typically begins with an assessment to identify goals, followed by customized interventions.
Rule Out Underlying Factors
Before focusing on creative strategies, it’s crucial to rule out other conditions that could be causing or worsening fatigue. Work with your healthcare team to investigate these top risk factors:
- Depression: Depression can be experienced in ways that are easy to overlook. You can ask your provider for a depression screening (e.g., the PHQ-9) to get an objective baseline.
- Interrupted Sleep: Poor sleep is a major cause of fatigue.
- Poor Diet/Nutrient Deficiency: What you eat can have a significant impact on energy levels.
- Medication Side Effects: If you are taking five or more medications or have recently changed medications, fatigue could be a side effect.
- Dehydration: Not drinking enough water is a common and fixable cause of fatigue.
Energy Conservation
Energy conservation involves modifying your routines and activities to save energy for what you really want or need to do.
- Identify What’s Most Impacted: Start by considering which activities, roles, or routines are most affected by your fatigue.
- Break Down the Activity: An OT can help you break down an activity into smaller parts to find ways to save energy.
Example: Cooking
- If you love cooking but have stopped due to exhaustion, pick only one meal of the day that is most important or enjoyable to focus your energy on.
- Get groceries delivered instead of going to the store.
- Purchase pre-prepped options, like pre-cut vegetables or hard-boiled eggs.
- The day before cooking, gather all your non-perishable supplies into an open container and leave it on the counter, making the next day’s task easier to begin.
Sleep Hygiene
It is common to recognize that being well-rested impacts energy, but less common to recognize how much you can control your sleep habits, or “sleep hygiene.”
- Consistent Schedule: Go to bed and wake up within the same one-hour window every day, even on weekends. This helps set your body’s internal clock.
- Cut Back on Caffeine: Try to have your last dose of caffeine before noon each day.
- Create a Calming Bedtime Routine: Instead of watching the news, listen to calming music.
- Manage Hydration: Meet your daily hydration goals at least two to three hours before you get into bed to reduce nighttime trips to the bathroom.
- Get Daily Exercise: Regular physical activity can ironically help with fatigue. Aim for at least 30 minutes.
- Optimize Your Sleep Environment: Use a sleep mask or blackout curtains to minimize light. Ensure you have a safe, lit path to the bathroom that doesn’t require turning on bright overhead lights.
Adaptation and Activity Modification
This approach involves finding alternative ways to do the things you love. It requires an open mind and creativity.
- Know Your Priorities and Environment: It’s important to know not only what activity is important to you, but also where it takes place, as this helps customize the solution.
Examples:
- Playing with Grandchildren: If you are opting out due to fatigue, try creating a more structured routine. Plan outings for one specific morning a week, or plan ahead with activities that match the energy level you can realistically offer (e.g., reading a book together instead of running at the park).
- Going to the Farmer’s Market: If the weekend market is too exhausting, identify the part you enjoy most. Is it getting specific food? Contact your favorite vendors ahead of time and ask if you can pick up a pre-packed order from a central spot. Is it finding parking? Ask the organizer about easier access. Is it chatting with vendors? Consider reaching out in other ways, like a phone call or card.
Question and Answer
Q: Does any OT work with fatigue, or do I need a specialist?
A: Any occupational therapist should be able to work with you on the topic of fatigue.
Q: Does apathy (a lack of desire to do things) play a part in fatigue?
A: Yes, it can. It can be difficult to tell the difference between fatigue, apathy, or even cognitive impairment (which can cause trouble initiating tasks). This is why a team approach is so valuable—a professional can help screen for these different factors to figure out the root cause.
Q: My 90-year-old dad has a lot of fatigue. How can I tell if it’s from Parkinson’s or just aging?
A: This is a great, complex question. An OT would want to know what brings him joy and if he is still willing to engage in those things when they are set up for him. Sometimes, as our environment changes, it can appear we have less energy when really we just can’t access joyful activities as easily. It would also be wise to work with his medical team to do lab tests to rule out other physical causes and to check his hydration levels.
Q: Is there a way to better predict fatigue episodes? My loved one will be fine one moment and then completely hit a wall.
A: It is very difficult to predict these episodes. A better approach is to have a Plan B for when you are out of the house. Know what you will do if fatigue hits suddenly. This might mean always bringing a walker that has a seat for immediate rest, having a specific type of snack on hand, or knowing where the nearest bench is. The part you can control is planning for the unexpected onset, rather than trying to predict it.
Q: Are there specific snacks, vitamins, or medications for fatigue?
A: This is highly individual and is a question for your neurologist or primary care doctor. To get the best answer, go to your next appointment with a list of what you eat and when, along with any vitamins or medications you currently take. This will help your provider see the full picture and give you personalized advice.
Q: What is your advice for coping with post-exercise fatigue?
A: Finding the right balance with exercise often involves some trial and error. Work with your team (neurologist, PT, OT). To help them, track what you are doing: write down the type of activity, how long you did it, and the time of day fatigue set in. This gives your team objective data to help you problem-solve a better progression. Be compassionate with yourself and keep trying, because exercise is wonderful once you find the right fit.
Q: How can you prepare in advance for an event or activity that will require extra energy or endurance?
A: As an occupational therapist, I always think in terms of specific situations. Let’s use a wedding as an example—it’s an event that will likely require more energy than usual. Ideally, you would plan ahead with a healthcare team member to create a personalized strategy. In general, think about what has worked for you in the past to boost your energy:
- Sleep: If you’re traveling, bring what you need for a good night’s rest.
- Schedule: Minimize activities leading up to the event so you can be fully present. Let friends or family know you’re “saving up” for the big day.
- Exit plan: Give yourself permission to leave early if needed.
- Environment: Consider what you bring with you—lighten your load by carrying fewer items, wearing comfortable clothing, and minimizing anything that’s high-maintenance.
- Hydration and breaks: Stay hydrated and plan rest breaks. You could set a timer on your phone, and ask a loved one to help you step away when it goes off.
It can be hard to take breaks when you’re with people you love, but planning them in advance can make a big difference.
Q: How can I explain my fatigue to loved ones?
A: First, think about your goal in sharing this information. Are you trying to help them understand your experience, or are you hoping for specific changes or support?
Here are two approaches:
- For understanding: “Fatigue is complicated. I’d like to share what it feels like for me and how it tends to show up.”
- For an ask or action: “I’ve noticed more fatigue lately, sometimes when we’re together. It would help me if we could make a few adjustments when I have fatigue. Would you be open to hearing some ideas about some things that could help me with fatigue?”
I like to “prep” people before asking for changes, so they have a chance to say whether they’re open to the conversation. Be prepared that not everyone will be ready to engage—but it’s still worth trying.
Q: Will a 90-year-old person with Parkinson’s still benefit from occupational therapy? And how can you respectfully encourage them if they’re resistant?
A: Absolutely—it’s worth trying. One approach is to speak with the occupational therapist first, so they can frame the therapy in terms of the person’s own goals.
For example: “I don’t want to waste your time. I’d like to help you with the things that matter most to you.” This could mean staying out of the hospital, staying independent at home, or pursuing a favorite activity.
If therapy is clearly connected to what’s important to them, they may be more willing to engage. And even if they decline, at least you’ve tried.