Thank you so much to everyone out there for joining us. I am excited to give today's talk on essential tremor because I find this is something that people have a lot of questions about and have a huge lack of confidence about. I hope at the end of this talk that you are able to help a person with essential tremor to reach their goals and allow participation in activities that are most meaningful to them. A PT colleague of mine did a similar presentation for the International Essential Tremor Foundation. I typically am the point person from my clinic for these types of talks, but she said in her area, she was tasked to do it because the OTs in her setting were not confident doing it. I hope that another outcome from this course would be that you, as OTs, have more confidence in this area.
What is Essential Tremor (ET)?
- The most common form of tremor
- May be mild and non-progressive or slowly progressive—may accelerate near age 65
- Hand tremor is the most common
- Head, arms, voice, tongue, legs, and trunk may be involved
- Kinetic, postural, intentional, and /or rest tremor
- Pathophysiology not certain—a clinical syndrome
Essential tremor is often misunderstood. It is actually the most common form of tremor. It is estimated that there are 7 million people in the United States alone that suffer from essential tremor. It may be mild and non-progressive, or it may be slowly progressive. They do not really understand why, but around the age or near age 60-65, it can accelerate, and sometimes the symptom management becomes worse. Of course, we mostly think of a hand tremor. That is the most common, but people may experience tremor in a variety of other body parts from their head and neck to their arms. Their voice may also get shaky and tremulous. They may have tremors in their legs or trunk, and even in the tongue. The tremors can be kinetic or postural, be with movement or without, or they can be intentional like when they go to pick up a fork or write with a pen. They can also have a resting tremor, which is typically more what we see in Parkinson's. They can have a combination or variety of these presentations. Today, I am not going to be presenting on the path of physiology because it is not certain. There is not a consistency when you look in the research so it is considered to be a clinical syndrome at this time.
Motor Features of ET
With an essential tremor, we often think of these motor features. Tremor is one of them, but there is another set of symptoms that may present as well.
- Postural instability
- Mild ataxic gait
- Possible saccadic eye movements
- Abnormalities in motor timing
When you look in the research, there is no disagreement on these, but some studies will focus on one area more than others. Postural instability is sometimes seen. People may have some balance impairments or feel that they are at risk for falls. They may have a mildly ataxic gait with the feet a little bit wider and a little bit more of a shuffle. You may see some changes to their eye movements, especially with some saccadic type movements. They may also have some changes to their motor timing. This is seen in how they time and react to situations and set the pace of activities. They might seem a little rushed when they are walking or moving. In some of the literature, I have also seen dystonia. It was not really clear in the evidence whether they felt that this was in addition to the essential tremor or related to the essential tremor. Dystonia is when people have abnormal posturing or contraction of muscles. A lot of times, dystonia is in the neck muscles or even as focal dystonia in the hand. It is something to look out for.
Non-motor Features of ET
- Mild cognitive impairment to dementia
- Psychiatric features– apathy, depression, anxiety, and personality characteristics
- Sensory features- hearing loss, mild olfactory changes (some studies)
- Sleep dysregulation
We know that we do not simply see motor features like tremors. They may have some mild cognitive impairments, and those may range all the way up to a dementia presentation. There can be some cognitive changes. There can be mood or psychiatric features as well. People may be depressed, anxious, apathy, or a loss of interest. And, of course, it is hard to tease out how much this is a mood or psychiatric issue as compared to them having difficulty doing things that they want to do. Maybe, there is a subsequent loss of interest and personality changes with the progression of the disease. Some articles reported sensory features like mild changes to smell or olfactory changes and some hearing loss, while other studies did not seem to find that at all. Sleep dysregulation also was touched upon. We will talk more about what these symptoms do a little bit later, but sleep dysregulation and fatigue can really exacerbate the tremor.
Impact of ET on Function
- Hand tremor impacts purposeful movement – writing, eating, shaving, sewing
- May be accompanied by mild gait disturbance-- FOF
- Mild cognitive problems for some
- Stress, emotions, fatigue or low blood sugar can trigger or increase tremors
- May cause embarrassment and lead to social isolation
When we think about the motor and non-motor features, we can start to see how this would impact a person's daily function. Of course, the hand tremor becomes very impactful to different movements. Writing, eating and using utensils, doing things like shaving or sewing are all affected. The mild gait disturbance may cause a fear of falling. I have had people with no history of falls, but they do have a fear of falling or sometimes feel unsteady. The mild cognitive problems can be seen as clients feeling a little cloudy or foggy. They may have a little bit more difficulty with verbal fluency, remembering names, and delayed recall of someone's name. I have also had clients report working memory issues. It is also important to note that stress, emotions, fatigue, or even low blood sugar can trigger or increase tremors. Their overall health and wellbeing become very important to manage as you cannot necessarily make the tremors go away, but you can try to control the triggers. The big one to keep an eye out for embarrassment as this can lead to social isolation.
- Psychological services/support
- PT & OT
- Handling embarrassment
- Alternative treatment options
- Stigma reduction
- Individualized treatment
- Address anxiety & depression
- Support groups
Defining the Treatment Gap: What Essential Tremor Patients Want That They Are Not Getting (Louis, Role & Rice, 2015)
I found this article really interesting. It speaks to patient-centered care. This group sent out a survey to people with essential tremor through the International Essential Tremor Foundation. They surveyed over 1400 people to determine gaps in care. What did essential tremor patients need but they are not getting? Interestingly, only 11.8% of the 1400 people that they surveyed were satisfied with their care. This shows that there were some big gaps in their treatment. Psychological services and support were areas identified. Due to social anxiety and possibly depression, people felt that they wanted those services in place. Physical and occupational therapy were mentioned as well. Many times doctors did not refer because they felt like there was nothing they could do. We cannot control the tremors, but I think as OTs, we know that there is a lot we can do to help support someone to compensate for that. Handling embarrassment in social situations and what they can do about that is also something that we can help them with. They also wanted alternative treatment options, not just medications. I am not going to get into it heavily today because of the time constraints, but deep brain stimulation, which is the implantation of a pacemaker in the brain, is one of the treatments for essential tremor. As you can imagine, that can be pretty invasive. There are some medications, but there are not a whole lot of treatment options. Clients were also looking for stigma reduction around these tremors, and for their treatment to be individualized. I think everyone wants that. As occupational therapists, when we look at the individual and the whole person. Ee can go a long way in making our treatment very patient-centered to satisfy that need. They also wanted their anxiety and depression addressed as well as education. We can provide a lot of that education, and we will get into some resources at the end. They were also looking for support groups in their area and people to talk with.
Let's get into assessment. I also want to talk about some assessments that I did not go into detail about and why. If you ever have questions about an assessment, feel free to reach out to me. If we are going to focus on patient-centered care, it is really important that we go back to our roots and use a client-centered, top-down approach.
Client-Centered Top-down Approach
- Develop an occupational profile--focus on assessment of participation and occupational performance
- Patterns, routines, and roles in daily activities
- Determine values, interests, and needs of the person
- Identify areas of concern or difficulty in daily activities
- Select outcomes meaningful and relevant to the client
(Weinstock-Zlotnick & Hinojosa, 2004)
**Establish realistic expectations
We start with an occupational profile no matter what. I always say that I do not treat tremor or diseases, I treat people. Focus on their participation and performance. What are their routines, roles, and patterns to their daily activities? What are their values and interests? What is most important to them? I think it is important to identify their areas of concern. For example, someone might come to see me for their handwriting. However, if I ask them if this is what they really want to work on, and they say "No", then I am not going to focus a lot of my time on handwriting. When we start looking at our outcome tools, we want to make sure that they are meaningful and relevant to the client. This leads into why I left some of the assessments out of the discussion. They are perfectly fine to do like the Nine Hole Peg Test, the Perdue Pegboard, and Box and Blocks. I am not really going to get into those because I think we are all familiar with them. If you feel it is relevant to use these for a client, absolutely do so. However, do not forget the other measures that we are going to talk about that look at what is meaningful. As a reminder, I starred the phrase, "Establish realistic expectations." What I mean by that is that nine times out of 10, when a client comes to me with essential tremor, they will say their goal is to control their tremors or make their tremors go away. We need to be honest with them. I use a lot of humor, and that is not appropriate for everyone. "I just want to make sure we're on the same page. If I could do that, I'd probably win the Nobel prize. Unfortunately, I'm not going to be able to make your tremors go away, but what I can do is help you reduce the things that are going to trigger your tremor and give you strategies to help you compensate." I want to make sure that in no way do they think that I am going to be able to give them an exercise or activity that is going to make their tremors go away. So, what assessments can we do? How do we get to those patient-centered areas that matter to them?
The Canadian Occupational Performance Measure (COPM)
- Semi-structured interview
- A client-centered measure of perceived performance and satisfaction over time
- PwP chooses the five most important activities to target
- Helpful in collaborative goal setting –client prioritizes and rates
- Can be used to address the care partner
- Established validity and reliability
- (Law, Baptiste, Carswell, McColl, Poltajko, & Pollock, 2005)
I am sure most of you are familiar with the COPM as it helps clients to select the activities that they want to target. You are measuring their perceived performance and satisfaction over time. With something like essential tremor, you may not see changes to the Box and Blocks, the Nine Hole Peg Test, or the Perdue pegboard. However, if the person feels like they are able to eat better, to write better, to get dressed more independently, that is what we want. You can also use this in collaborative goal setting. What is it about dressing that you want to be able to do? Gardening? Cooking? You can also use this to address the care partner if needed. It has good established reliability and validity and is an excellent measure to use. It does require permission and purchase so it is not available always at every site.
Performance Assessment of Self-Care Skills (PASS)
- 26 tasks in four different domains
- Functional mobility, ADL, & IADL (physical & cognitive)
- Each subtask is rated for independence, safety, and adequacy on a scale from 0-3.
- A higher score indicates greater independence, safety, or adequacy.
- Level of assistance needed and the frequency of prompts
- Frequency of prompts and types of assistance are recorded to aid in intervention planning
- A therapist may administer only those tasks deemed relevant to the client
- A therapist may use PASS template to develop new PASS items
(Chisholm, Toto, Raina, Holm, & Rogers, 2014)
I have learned recently more about the PASS. I am still digging into it and learning more as it is quite complex. I would encourage you to at least explore it. It looks at functional mobility and all their activities of daily living. For each subtask, you are rating their independence, safety, and adequacy. You can take out different sections and just look at the areas that are relevant for the patient. You can also use the template in the assessment to create your own items as well as customize it to the client. To do this, I would encourage you to reach out to the individuals who created the assessment. They send you a whole file of how to get started with it and how to administer it. There are both home-based and clinic-based versions.