Francois Bethoux, MD, Chair of the Department of Physical Medicine and Rehabilitation at the Cleveland Clinic, talks a new device that may help those dealing multiple sclerosis.
When someone is diagnosed with MS, is one of the worst parts the slow progression of losing your freedom and mobility?
BETHOUX: Yes. MS causes many symptoms. But one of the major ones is the loss of the ability to move limbs as you would wish to in your daily activities. However, not every patient with MS will lose mobility. Many experience some limitation. There was a survey done by the MS Society a few years ago that found that about 40% of the people they interviewed who had MS said that in some way, they had difficulty with walking in their daily life. And that, in turn, affected many of their activities, their quality of life, and their social life. Even people who were in their family said that they were indirectly affected as well by this loss of mobility.
What gave you the idea to use the exoskeleton?
BETHOUX: The idea came because I was aware of the technology. It was used primarily for people with spinal cord injury and more recently, people who have had a stroke. Several of them approached us and asked why wasn’t this technology used for MS? So, I started looking into it. It took a few years before I met with somebody who had done a pilot study in MS. I visited his lab in New York City and tried to understand how to approach it in the most effective and safe way. Then, I had an opportunity to conduct this study just this past year.
How does this study work?
BETHOUX: The study is what we call a proof of concept study. It’s very small with only five people. We’ve just finished assessing the last participant. There is no control group. It’s basically enrolling somebody who has MS with moderate-to-severe difficulty walking, and train them with the device in the gym at the MS Center three times a week for about eight weeks. So, it’s fairly intensive as far as outpatient rehabilitation goes. Each session is about one hour. During each session, there is some time spent walking with the exoskeleton. Towards the end, there’s increasing time with gait-training over ground without the device because the idea is to use the device to enhance rehab so when people go back home and do the exercise routine on their daily activities, their ability to perform this exercise and these activities is enhanced without using the device. They don’t take the device home with them.
What was it like when you put someone like Kathy in the device for the first time?
BETHOUX: I give our physical therapists a lot of credit for figuring out how to make it a pleasant and fruitful experience for the study participants. They had extensive training beforehand to know how to use the device, how to change the parameters of the programming, and how to make it work for patients. Rehab is always individualized. But in MS, it’s even more so because there’s not two patients who present with the same difficulties. There’s the strapping the person into the device, adjusting it to their body habitus, and then getting them to just stand with the device and getting used to having the device provide some assistance. Many people say it feels awkward at first and maybe even feels unsafe. They must get their sea legs basically.
Kathy explained getting back to a normal gait was difficult for her. We seem to compensate in a way that we have to retrain our brain. Do you find that with everyone?
BETHOUX: Yes. Retraining the brain is the key expression here. The idea of gait-training in general in MS and other conditions is to try to correct some of these patterns and make walking safer and more efficient in hopes to improve endurance as well. The device helps do it without having to tell the person to not swing their leg as much, but also provides some assistance so that the swinging is not needed anymore. The degree of assistance is variable so that there could be maybe more assistance towards the beginning of the training and then less and less as people get used to walking with the device and having a different gait pattern.
How long does it take for someone to retrain their brain?
BETHOUX: I can tell you that based on anecdotal reports and on the results, they were probably still in the process of retraining the brain. It’s a long process. The intensive rehab allowed to jumpstart this. But I think that if we had continued it longer, they would still have more benefit and more retraining happening. It’s more about getting used to the device and training with it. It seems that it took probably a third to a half of the training time getting really used to it.
Do you think if this could be incorporated into therapy every week, it could prolong mobility?
BETHOUX: That is really the ultimate goal. Unfortunately, outpatient rehabilitation cannot last forever. There are financial constraints and access constraints. But there is a model I saw operating in New York City where the center was doing the rehab research training. He had an arrangement with a local gym where the devices were available at the gym. The person was trained to help people realize they needed to be out to get into the device. And then, they were doing their weekly or twice weekly exercise routine with the device. Now, that’s a model I’m very interested in for the future. The devices, as one can imagine, are expensive and generally not well-covered by insurance. So, it would maybe be an undue burden on most people to tell them to buy it for their own use. But if a gym or fitness center would be able to purchase a few of these devices and get their staff trained, they could be more easily accessible and probably closer to where people live where they could go and continue the training with the device.
There’s a woman in Snowmass, Colorado with an organization called Bridging Bionics. She was paralyzed and was one of the first exoskeleton-test people. Her organization now buys these exoskeletons for gyms for people who have issues walking. Few people have said they felt more sensation up their body when they used the exoskeleton two or three times a week for two or three years. Do you think this could happen for MS patients as well?
BETHOUX: I’m always careful when I answer these questions because we don’t have the evidence right now to say for sure if it will happen. I think there are two major potential benefits that I see to making the exoskeleton exercise available to as many people as possible. One is to overcome the barriers in doing regular exercise when somebody has MS. There are many barriers to exercise that have been identified like fatigue, depression, the lack of access to facilities with the adequate equipment, and even transportation. So, if we can minimize these barriers, that is already a great achievement. And then, who knows what the limit is of retraining the brain? I intend to do more studies looking at the impact of this training on how the nervous system functions to tease out what could happen overtime. It will be different for different people. And if you imagine pairing that with increasingly potent treatments, medications for MS, and maybe some treatments that help protect and regenerate nerve cells, it almost sounds like the sky’s the limit. But we always want to be humble in medicine. I certainly see a great synergy where if we stop the disease process from attacking the brain, it opens the door to that plasticity, which is, retraining the brain. And, if we have the device to make it more potent, then that opens great horizons.
Interview conducted by Ivanhoe Broadcast News in December 2018.
END OF INTERVIEW
This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.
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