Dr Kelly Lyons, PhD, PhD has been the president of the International Essential Tremor Foundation (IETF) since 2008, and has been associated with them since 1997. She is the Research Professor of Neurology, and Director of Research and Education for the Parkinson’s Disease and Movement Disorder Center at University of Kansas Medical Center, and has a particular interest in clinical care, research and education for persons with Essential Tremor, Parkinson’s disease and related disorders Emile Maamary, is the COO and Co-founder of Steadiwear, a company that develops and markets assistive devices specifically for sufferers of Essential Tremor and Parkinson’s Disease.
Emile’s dedication to developing assistive technology devices for tremor sufferers, led him to interview Dr Kelly Lyons in June this year, to better understand Essential Tremor and the impact it has on sufferers.
Here is what Dr Kelly had to say in the interview.
Emile: Thank you Dr Kelly for making time in your busy schedule, to talk to me. I have a number of questions. Firstly, Essential tremor is one of the most common movement disorder in the world. Would you be able to shed some light on symptoms?
Dr Kelly: Essential tremor is the most common movement disorder in the world. We estimate 10 million people in the USA, at least. As the name, Essential Tremor, indicates, the primary symptom is tremor – most typically in the hands, but it can also affect the head, voice, legs, and sometimes even the trunk, and the tongue at times. So, in short, it can affect the whole body.
Emile: and, in your experience, what are the most troublesome activities for sufferers?
Dr Kelly: Typically, in the research we’ve done, a multitude of daily activities are affected.
Activities people really need to be able to do, to take care of themselves, to remain independent, such as eating, drinking, or writing. A lot of people have trouble using the computer, often repeating key strokes. Even getting dressed can be a problem, especially when attempting smaller movements like trying to do up buttons or fasten necklaces. All those things may require a little bit of extra effort. So, I would say all major activities of daily living are affected by Essential Tremor.
Emile: Thank you. Moving onto the next question. How has the COVID-19 pandemic impacted visits to your clinic?
Dr Kelly: Certainly, this is different throughout the country. Different practitioners are handling it differently. At our office, what we have, is a video option, so we are able to do basically a WebEx with the person with the essential tremor, and whoever they choose to have in the room. Those have worked out very well for us, and during April, we were doing ninety to a hundred percent of our visits that way. Now we are going back to more people wanting to come to the clinic in person, which we are allowed to do, by following all the rules and regulations regarding disinfecting, protective equipment, and pre-checking for COVID symptoms. I think the video worked well for those people who had difficulty getting into the office, or were fearful of contracting the virus, I also think, with tremors, sometimes it’s very subtle. You don’t always notice as much on the video as during an inperson visit. The video technology however, was an effective interim solution for us, that enabled us to still see all of our patients.
Emile: Similarly, for us. Due to office closures we had to start working from home, and relying on video conferencing calls too. Video calls have been really effective for us, and we’ve realised, they are in fact, the most effective way to get information, rather than asking patients record and send us video footage. So, my next question. What can tremor patients do if they can’t physically go to their healthcare providers? Are there measures in place other than tele-medicine? For example, I know there are assistive technology clinics across the United States. Do you know whether these clinics are still open, to accept people to come and try assistive devices during COVID-19?
Dr Kelly: I honestly don’t know the answer to that. In our clinic, most of the devices we have are prototypes or a demo version. Our clinic utilises occupational therapists and staff to enable patients to view and test a range of different devices. Due to the COVID rules and restrictions, around pre-checking, we weren’t able to open our services to walk in patients – only to those who already had a clinic appointment. My guess is that the assistive device places may not be open right now, because, like for us, the cleaning and tracking issues are significant. We typically do a lot of assessments with body sensors, to monitor changes in walk gait and balance, and we’ve not been able to do those because we were unable to find an approved way to clean the straps that go on the wrists. My guess is, that a lot of assistive technology clinics, where patients are able to touch and try the devices, may face difficulties, and would not have been able to open, because of the disinfecting aspect during COVID.
Emile: Well, you’ll be pleased to know that both the Steadi-one and the Steadi-two are both machine washable. If assistive technology clinics are open, they are able to simply clean our products with detergent. Of course, the stabiliser detaches so if there is a washing machine available, it’s easy to just throw the glove in.
Dr. Kelly: That’s wonderful, and great for patients too.
Emile: So, the next question. How beneficial has medication been for patients, in your experience?
Dr. Kelly: The problem with medication is, that we don’t really have any medication that has been developed specifically for essential tremor. All of the medication used was developed for other conditions, but then was found to help to some extent with Essential Tremor.
For example, propranolol (beta blocker), primidone (anti seizure), and Benzodiazepines (anxiety medications) to name a few.. Typically, what I’m seeing is that the medicines may work for thirty to fifty percent of the patients. Having said that though it very rarely works completely – there may be a thirty to fifty percent benefit. Very seldom, other than with something like deep brain stimulation (DBS), do we see a really drastic, significant, improvement in the tremor at the eighty to ninety percent level. I think probably less than half the patients we see, respond to medication, and then with only a thirty to fifty percent response on average.
Emile: Does medication work better for individuals with mild, moderate or severe tremor? Is there a variance – do you see that it works better for one case rather than the other?
Dr Kelly: I don’t know that studies have been done to really pinpoint what medications work best for which people. Patients have told me, very early on when they first try a medicine, they see a benefit, in that it works to some extent, but then over time, as the tremor worsens they are unable to maintain that same benefit.
The problem is that in studies, we tend to use people who have a pretty significant tremor, so that we can see a significant decrease. If a patient only has a very mild tremor there’s not a lot of room to get better. That means we are unable to say how effective the medication is for a range of levels of tremor. In reality, if a patient has a really bad tremor, the measurable effect is greater, and medicine appears to have worked better, than on a patient with a mild tremor.
Emile: My next question is about DBS and focused ultrasound – are these treatments only recommended for people with severe tremors?
How does that process work and are you familiar with the cost of each?
Dr Kelly: I’ll start with the cost, although I can’t speak a lot about it because I think it’s largely insurance-based. I do believe both DBS and focused ultrasound typically run through insurance, but my understanding is that for DBS, we have a very high rate of insurance approval, so people have been able to get DBS if they need to, without a significant personal cost. Focused ultrasound, being newer, I don’t have as much information. Our university was supposed to get focused ultrasound in March, but that didn’t happen due to COVID, so I don’t have the hands on experience with costs, but I recently heard that people are getting some coverage from their insurance companies.
Emile: Are those procedures only recommended for people with severe tremors or is it across the board?
Dr Kelly: I think it depends partly on the patient, and partly on the doctor. Typically, we’ll use it for medication-resistant tremor, which, as we talked about earlier, can be a big proportion of patients. It would be very uncommon to do DBS for a very mild tremor. Typically, the people have significant tremor for us to do the brain stimulation, or the focused ultrasound. But I think, every now and then, it depends on the person’s occupation, and other aspects of their life, and how bothersome it is to them personally. So, in answer to your question, we would generally only consider either of these procedures for patients with high end moderate to severe tremor, and we would not be inclined to do DBS for mild to moderate tremor.
Emile: So, the people who go under the knife for DBS – we’ll leave focused ultrasound out because you don’t have enough information – how many of them come back? – do a a major percentage of the people coming back say it worked in the beginning, but not as the Essential Tremor progressively got worse with time? Do you find a lot of people are coming back and saying, “what do I do now?”
Dr Kelly: In the literature, a lot of groups talk about whether habituation or tolerance, or the tremor just progressing, causes the DBS to not do so well over time. We have, at the University of Kansas, done DBS since 1994, and to be honest with you we don’t see a lot of tolerance or a lot of people who are coming back unhappy. All our patients come back every 6 to 12 months, so we can adjust the programming, and attempt to make accommodations for any increase in tremor or any other adverse events that may be happening. I would say from our side there are only small percentage of people who will report lack of benefits or tolerance over time, and when they do we first examine the location of the lead to ensure that it isn’t something with how it was placed or that’s it’s not in exactly the right spot and therefore they’re not getting the benefit they could. It’s interesting, with Essential Tremor patients, they’re much less likely to want to have DBS than say a Parkinson patient, – somebody who has, more disability, from the symptoms. I think it’s only a small percentage of essential tremor patients that actually want DBS. There seems to be a much bigger interest in focused ultrasound, but at his point in time, I don’t think we have nearly enough data to make a determination on how it compares with DBS, or what will happen longterm. We are unable to predict whether the patient will experience tolerance and then have to try something else. I think that data will be coming… but it’s not here yet.
Emile: In conclusion, my last question is about assisted devices. Which assistive devices from the past, or from new technologies, have you found to be the either the most successful, or the most requested, from your customer base?
Dr Kelly: That’s an easier question for Parkinson’s! For Essential Tremor, there’s some interest in the Cala device. I think a small percentage of patients who really find Liftware useful, but the problem with that, is the relatively high cost of it, and usually it helps with only one function – if it helps with eating, it’s not going to help a patient type, or put a key in a lock, or other things. To be honest, with Essential Tremor, we don’t really have a lot of requests for specific assistive devices. We do have people come in and look at the Liftware, and we loaned it to them to try, but to be honest, I don’t really follow up with who purchases those, and who doesn’t, so I don’t have good numbers on that. As to the Cala device, I don’t really have a feel for it, but I don’t think the majority of our patients are using or requesting it at this time. That may be because COVID got in the way. Sadly, I think there are a lack of available devices for people to try, and if you consider the 10 million people who potentially have the Essential Tremor just in the United States, each of those people are different, so there really need to be multiple options, to enable people to find the one that works best for them, and the activities that have been affected for them. It will probably differ a little bit from person to person, – what one person would like, another one won’t.
Emile: Finally, given you like to keep assistive technology devices in-clinic, is your clinic open to a sample of either version 1 or version 2 of the Steadiwear, depending on the timeline?
Dr Kelly: Oh, absolutely yes! Our goal is to have available, everything that’s available for people to try. We want people to know what options are out there. Like I said, with any given device, one person loves it, one person hates it. What helps one person a little bit, but not enough to purchase it, another person can’t live without. I think it’s really important clinics have products there for patients to try, so they can really see what they feel like, how they work, and how they help with different activities’. There’s no better way to get the word out about a product, as having people try.
Emile: Thank you very much for answering these questions, and for agreeing to have one of the Steadiwear products in your clinic.