An Interview with Christy Dittmar, MS, OTR/L, CDRS.
As we’ve discussed throughout this issue, fatigue is an extremely common, complex, and challenging problem in MS. Frustratingly, there is no one silver-bullet solution to manage or reduce it, but there are several strategies that can help. Energy conservation strategies are one set of tools that some people can find helpful in managing their fatigue.
We recently sat down for a conversation with Christy Dittmar, an Occupational Therapist who has worked with people living with MS for more than 25 years, to learn more about occupational therapy, the “Four P” strategies for energy conservation, and ways to help manage fatigue at home and at work.
InforMS: Could you please tell us about the field of occupational therapy?
Christy Dittmar: The name “occupational therapy” is often confusing to people and even for some medical professionals. The word occupation actually refers to what we all do during our day. We each have many roles and we have many types of tasks pertaining to those various roles.
An occupational therapist (OT) is trained to evaluate a person and their functional abilities in various life roles and goals. This evaluation is conducted through history taking, observation, and standardized testing.
And it certainly doesn’t just mean work: it means play, leisure, life with family, household management. It could mean your job and it often does, but it doesn’t necessarily have to mean paid employment. It is all the components that help us to reach our short term or long term goals.
An OT can help someone break down the components for daily tasks that are impacted by a disease, disability, or an aging process that need to be considered. To analyze each task, we observe, watch, and clinically assess how the individual is doing with their movement, cognition, sensory systems, and their visual systems. Based on that assessment, we evaluate how they can do the task components and accomplish their goals.
InforMS: What does that first evaluation typically look like?
Christy Dittmar: We start by identifying the individual’s goals and the reasons they are coming to us. For example, if a person has MS and one of their goals is to be able to manage their home, we are going to break that down and determine exactly what that means for them. Are they managing their home, or is it more about organizing other people to help them get it done? Maybe it’s a combination of both things. From there, we look at the factors that are contributing to the inability to do that: endurance, safety for standing, and balance. How are they able to manage the physical part of the tasks that they want to do? Do they need adaptive equipment to be able to accomplish that?
We look at the entire spectrum of activities of daily living (ADLs). ADLs are basic activities including eating, dressing, bathing, and basic self-care. Another category is instrumental activities of daily living (IADLs), which require a more complex cognitive approach that require us to plan, organize, and think — such as bill paying, medication management, cooking, planning menus, getting family organization in place, raising children, coordinating work and home schedules.
If someone is using a walker and having difficulty maneuvering from the kitchen to the dining room, could we insert another tool such as a four-wheeled cart? Incorporating tools like that can help people accommodate. It could also mean looking at the positioning of where you’re working: Are you standing more than you need to? Could you adjust your set up in the bathroom, kitchen or the bedroom to allow more sitting? Some people may need a driving assessment – what equipment might help them drive safer and with less energy? Addressing all of these factors can help make performing daily activities less energy draining.
InforMS: Given the overwhelming nature of MS fatigue, how do you help someone untangle the complexities of what’s contributing to an individual’s fatigue, and how do you strategize to help them manage it?
Christy Dittmar: A good place to start is to a conduct a self-assessment of fatigue. This helps us measure the severity of their fatigue during different activities – including physical, sensory, cognitive, and emotional components. Using the assessment tool, we can start to understand the different ways that an individual is struggling with fatigue.
For example, a woman living with MS explained to me that throughout her work day she needs to do a lot of walking. And then, in the evening, it’s hard to physically keep on top of everything she needs to do: “I can’t get through a meal without just being totally exhausted.” Given her individual challenges, we started to analyze her physical energy demands and what she can do to simplify the meal activity.
Together, we looked at the cognitive, emotional and physical components of what’s typically happening at dinner time. She described one scenario where she was preparing a meal during a time she was distracted – she was wondering if everything was okay with her kids and not focusing on the meal preparation – something we can all relate to. With that dynamic, it might be important to get the kids involved in a quiet activity or to use other ways of getting that meal prepared. Or instead of using the stove top, are there any elements that she could do ahead of time? The Crock Pot or Instant Pot offer great make ahead meal strategies. Or could she think about small ways to simplify the meal with advance preparation? Planning and preparing ahead can save time and conserve energy when you are exhausted.
Fundamentally, it’s important to help people understand the flexibility of options. Taking a step back and listing possible options, so that you have choices, instead of feeling stuck in the way you’ve always done them.
InforMS: How does that feeling of increased control tend to impact someone’s well-being and ability to manage fatigue?
Christy Dittmar: Feeling a lack of control can result in a stressful and damaging cycle that impacts people physically, cognitively, and emotionally. Some people with MS get so fatigued that they get double vision, or they can’t concentrate, and physically they are just wiped out. Sometimes, they can no longer even sit and they have to go lay down. When a person feels they weren’t able to get things done, their frustration and fatigue grows. These escalating stressors can contribute to sleeping poorly that night. When we don’t sleep as well, we have a tendency to have higher cholesterol, higher blood pressure, and heart disease.
Given that unhealthy cycle, it’s important to have tools that help manage that and revive a solid sense of control. And that feeling of being more in control is very powerful: it brings you both physical energy and cognitive energy. You are building brain reserve for the moment and for the whole day until you go to bed at night. You’ve crossed off what you’ve done, and, at the end of the day, you recognize your accomplishments.
Christy Dittmar: When you’re prioritizing, you really have to be gut-level honest about your priorities and that can be tough. I recommend sitting down and writing your daily list. Using our phones can be great, but for many people, getting back to using a pen and paper to make your plan for the day is very helpful. Start by listing out your priorities for the day. Once you’ve written them down, you have a clearer picture of your focus areas.
For example, let’s say you have a meeting scheduled with a colleague at work. You have a specific time and a place to be, so this is a non-negotiable task. It’s what we would call an “A” priority – meaning that it really has to happen or there’s a consequence. An “A” priority could also be anything that must be done that day relative to your personal life or your medical situation – refilling a prescription, calling your physician, or setting up an appointment. And it could include getting in touch with a friend that you dearly love who is going to the hospital that day for surgery. Those are all “A” priorities.
Everything else that you add to the list is still important and valuable, but it’s going to become a B or a C. You can carry them over to the next day because they don’t have to be done soon. You have to be very honest: Does it really matter?
If it doesn’t, I have to set that aside. I can organize my thinking to make sure my mind isn’t racing, because I’m focused on my A list.
Once you have your A list of priorities, you can rank them in order of importance – 1, 2, 3, etc. Just going through that process alone is amazing. It helps to give you the sense of: “Wow, I’m in control. I’m not quite as stressed because I’m being mindful of what it is I need to do. I’m not saying it’s good or bad, I’m not judging. I’m just making my list and saying what I logically need to accomplish.”
InforMS: Could you talk about navigating fatigue with a family? What are some strategies to employ when you’re dealing with fatigue, stress, and the challenges of raising children all at the same time?
Christy Dittmar: It can be helpful to identify the crisis points in your week with your kids. What are those about? When is it that things are not going well? From there, it’s about breaking down the situation and evaluating what’s contributing to your stress and fatigue.
Let’s look at the after school hours — a typically hectic time of day for most families. You’ve got one child needing to go to soccer practice, another child needs to be somewhere else for piano and everyone has homework, so everything is starting to stack up. To help manage the overwhelming dynamic this can create, I recommend having a family meeting time to sit down when it is a quieter time — maybe a Saturday or Sunday afternoon to make a family calendar. This calendar can be either digital or paper or on a whiteboard on the fridge — whichever option works best for your family. Together, you make a plan and delegate duties to clearly establish who’s got to be where and when, and who can step in.
With parenting, it’s critical to delegate. And, as a person with MS, you cannot be the one to do it all. You can do your part, but remember your other resources, ask others for help. Work out carpools with people in the neighborhood, or talk to other parents on the soccer team about ride sharing. Don’t wait until the crisis when you are at the point of exasperation. Set aside time to plan ahead and prioritize.
It’s also important to understand that timing is everything with kids. Think about the best time of day to have a conversation and approach them with something and you can save a lot of battles and a lot of tears if you are able to just analyze the timing. If I’m exhausted and tired, I’m not going to approach a difficult situation or behavioral issue the same way I would if it was a good moment.
InforMS: What are key takeaways that you’d like people living with MS to understand about managing fatigue and MS?
Christy Dittmar: I think it’s important for individuals to take the time to do a self-assessment. Maybe every few months, you make time to be by yourself to evaluate: How am I doing with key areas of my life? Through this exercise, you can identify areas that you might need to think about adjusting.
For assistance in connecting with an Occupational Therapist in your community, you can reach out to the Occupational Association of Colorado at www.otacco.org, or the American Occupational Therapy Association at www.aota.org. n
Christy Dittmar, MS, OTR/L, CDRS: Christy has worked in the field of occupational therapy and driver rehabilitation for 25 years. She is a graduate of Colorado State University and has been a Certified Driver Rehabilitation Specialist for 25 years. She has strong community connections that have been created from 27 years as clinic director and co-owner of the Center for Neurorehabilitation Services (CNS). Much of this insight comes from connections through the MS Clinic at CNS and others who participated.