The Comeback Podcasts
Deep Brain Stimulation Helps Woman Recover from Stroke
Deep Brain Stimulation Helps Woman Recover from Stroke
Kyle: Hey everybody welcome to The Comeback, I'm your host Kyle Michael Miller. During this episode we're talking with Judy Slater whose left side was severely affected by a stroke. Get this – she’s the very first person to undergo deep brain stimulation to help her move again. We're also joined in studio by her neurosurgeon and lead researcher Dr. Andre Machado from Cleveland Clinic. But first we caught up with Judy at her home over the summer. Here's Judy in her own words.
Judy: One morning, it was Memorial Day…I crawled out of bed and I fell to the floor and I couldn’t get up then they took me to the hospital. They weren’t sure what happened to me then I ended up going to Cleveland and they found out I had a stroke. I went to my mother’s house to stay ‘cause she has a ranch and I have stairs and I couldn’t do steps. I went there and I stayed there for about four months until I come home. I couldn’t do anything. I had to count on everybody to help me get dressed, get showered, just getting to the bathroom and just even getting outside, they had to help me. When I was cooking, I had a hard time cutting vegetables up. My daughter had to get everything ready for me, have everything cut up because I couldn’t hold it and cut at the same time. My granddaughter, Peyton, she’s 6, and she did a lot of stuff for me. She would be getting my water for me, or helping me to the bathroom, or helping me get dressed. Sometimes she’s worse than my therapist, she’s in here, common Grammy you can do it! Then, Everett, I have to get down on the ground and play cars with him, and he gets mad because I can’t make the cars go fast enough, or it won’t go straight…but I’m gonna get there. They’re my everything.
Kyle: Judy, Dr. Machado thank you for joining us today.
Machado: Thank you.
Kyle: So Judy we just heard what it was like for you to struggle with daily activity after the stroke compared to where you were in 2015. How are you doing today?
Judy: I'm doing so much better, in the kitchen you don't realize how many times you need both hands. I can now take stuff out of the oven, I like to use both hands to lift them up and put on the stove and then when I make stuff you know, you can measure it out, I can tip it and then I have the other hand to scoot it all out of the measuring cup so, before I couldn't do that. I couldn't do anything I always had to have a second person with me.
Kyle: Judy what was it like to one day be able to walk and move around and have complete mobility to the next day have your independence really just completely taken away?
Judy: It's hard you don't realize you know how much you use the two hands until you can't do it and you only have one hand to do it with.
Kyle: Dr. Machado, deep brain stimulation for stroke patients has never been done until now. Can you kind of walk us through DBS and how it works for patients like Judy?
Machado: Yeah I think we have to start perhaps with the standard use of DBS that we use currently every day and how that got us to the question of whether we could help patients that had suffered a stroke. Deep brain stimulation is like a pacemaker inside the brain. It is routinely used to treat tremor slowness in patients with Parkinson's disease. We do this very frequently here at Cleveland Clinic. It is not experimental. It is just a part of regular care. Some ten years ago a group of scientists here at Cleveland Clinic began to ask if we could take deep brain stimulation one step beyond and use it not only to make a tremor go away but to try to recover a function that had been wiped out by a stroke. So we spent years, and years, and years in the laboratory doing this before we felt that we were ready to try it in patients for the first time and after obtaining funding and after obtaining approval from the Food and Drug Administration we began to look for the first person ever to undergo this procedure and we were remarkably lucky to cross paths with the star that’s here to my right.
Kyle: Dr. Machado what kind of progress have you seen Judy make since DBS?
Machado: Judy articulates it better than I can, she explains it better than I can. From my eyes I see someone who had very little use of the left arm and the left hand. With physical therapy alone could make some improvements, but not as substantial improvements, but by combining deep brain stimulation with physical therapy, using deep brain stimulation to boost the effects of physical therapy we saw Judy begin to move her hand more and more, it was gradual to a point that just as told you she can use the left hand as a supporting hand for the right hand to work. She can do tasks that require both hands like what is it, Judy? Cooking? Washing?
Judy: Washing, washing the dishes. You know it's hard to do dishes because you need one hand to hold while the second is scrubbin’. Before you know I had to set it down in the sink and I had water going everywhere. Now I can hold the pan, and scrub and do my laundry again, fold clothes. You don't realize you need two hands to do all that, fold a towel, or washcloth.
Machado: What about dressing yourself?
Judy: Dressing myself so much easier. I can do a zipper now, I can button shirts.
Kyle: So even just the basic function you lost.
Judy: Right. I couldn't do any of that. Now I can do all that.
Machado: I had never thought of that until Judy told me about it. How hard it is to get dressed every day, to get dressed and to zip up pants or zip your coat. You can't really pull a zipper up without a second hand. I never thought of it.
Kyle: Judy did you tell Dr. Machado what you made for Thanksgiving this year?
Judy: I made cheesy potatoes and a strawberry pretzel salad so, I made all that and that's big and heavy, potatoes and putting the sour cream and you having to stir it and put it in the oven and take it out, so I did it all myself. I didn't have to have anybody in there to help me.
Kyle: That's amazing.
Machado: That's amazing. And you had enough strength on your left side to be able to hold the left side of the pan?
Judy: Yes, I can pick them both up together.
Kyle: What was it like to have your freedom back?
Judy: It's nice. It's so nice. You just don't realize you know you always I had to count on somebody to be there all the time. You hate asking people to come help you know, just to do an easy task that you should have been able to do all by yourself.
Kyle: Judy you were the first person ever to have DBS for stroke. Were you nervous at all?
Judy: Yes, I was very nervous. I didn't really have anything to go on. He did it with Parkinson's people. I was the first for, I have nothing to go back and see anybody else how they did with it. I thought well if I can do it, if it don't work for me I'll be happy if I'm going to help somebody else so they don't have to go through all this.
Kyle: So you put a lot of faith in Dr. Machado?
Judy: I did.
Kyle: No pressure Dr. Machado, at all, right?
Machado: It’s teamwork.
Judy: It’s a lot of work but you can do it.
Kyle: Judy how soon after surgery did you start seeing improvements?
Judy: It was gradual. I'd say it was about a month or so before my fingers and that started really moving.
Kyle: Are there any specific examples, is there, is there one thing that happened that you were just shocked that you were able to do after the surgery that you weren't able to do before?
Judy: Just when I started, I would start to be able to move my wrist and turn it, and I couldn’t turn my wrist. Then when you could pick something up and actually read a book, you know, and hold the book and turn a page, that’s stuff you don't realize you couldn't do.
Kyle: You have two grandkids. They spend a lot of time with you.
Judy: Yes, they do.
Kyle: And after the stroke you weren't able to be as mobile with them.
Judy: I still had them all the time but they did the stuff for me, then we got to be able to sit down and read books again with them, and play cars, and all that kind of stuff, do our little crafts that we do. My crafts are little bit, pages aren’t fixed right. They have to fix it for me but it's getting there.
Kyle: And I understand that your granddaughter Peyton is sort of like a physical therapist for you right, that she keeps you on track?
Judy: Yes, at night when I'm doing my exercises. She'll always say now Grammy, you’re cheating! You didn't do that right, you didn’t put your hand out right, or I didn't turn my wrist far enough or straighten my one finger out so, she’ll make me do it over and over and over again. I think she just likes to punish me but, she helps me with my therapy at night doing all the, all my exercises I have to do.
Kyle: Dr. Machado were you impressed with how quickly Judy was able to regain her mobility?
Machado: Not so much with the speed. The speed is something that I expected it to be gradual. I was impressed with and surprised with how far and for how long she continued to improve to the point that based on the experience we gained with Judy we had to change the design of the study to allow for more months of therapy. We were not expecting Judy to continue to recover for so many months, after month, after month.
Kyle: So how long do you think she will continue to improve?
Machado: So, Judy will correct me here. In the initial study, when we first thought about it and bear in mind, I didn’t do this by myself. I stand here today talking to you about it. There's a really large group of scientists to acknowledge. We felt that she would improve maybe for three months, maximum four months. And that whatever she would have gained, that would be the limit. And based on prior experience that's, that's why estimated that and then we learned that by month three she was still improving month-to-month at the same rate as she was in the first month and we began to ask ourselves what do we do if by month four she doesn't slow down? Do we turn it off? Do we keep it going? And we decided to make a change in the study. We spoke with the NIH that's funding the study, we spoke with the FDA and discussed this with Judy, of course, and we wrote an amendment to the study to allow Judy to continue to have stimulation for a few more months as long as she showed continuous, trend for improvement. And right around seven months I think that the improvements began to slow down a little. Is that right?
Judy: Yeah, that’s about right.
Machado: And that was, that’s when she reached her peak but that was well beyond what we had anticipated and because you improve month-after-month you don't improve all at once after a stroke. This allowed her, the persistence of the benefits allowed her, to achieve a higher total result than we had initially anticipated even best responders to have.
Kyle: Can you explain how DBS works with physical therapy?
Machado: Oh we can tell you how we think it works.
Kyle: OK, because we're still in the clinical trial phase?
Machado: Yes we are. There is a lot to be learned. We think that DBS boosts the effect of physical therapy by allowing the brain that has suffered a stroke a very long time ago to regain its inherent potential for something that we call plasticity, that is a medical term, it's a scientific term, for the ability of the brain to reorganize itself after it’s hurt, the brain is not particularly good at recovering, it's very good at what it does until it gets injured. Physical therapy probably works by promoting some of that plasticity, some of that re-adaptation of the brain to allow the areas that haven't been killed by the stroke to pick up the function for the area that was damaged by the stroke. And we think that the deep brain stimulation is making that ability to reorganize, to readjust go further. This is our current belief based on everything that we have seen in the 10 years of laboratory research. And this is corroborated by the benefits that we see in Judy and in the tests that she, that she underwent. Today she's going to have another session of something called TMS. It's a way to measure the level of activity of the brain and when we turned on the DBS, we realized that the activity went up and this went hand-in-hand with her recovery over time.
Kyle: What’s the next step for Judy?
Machado: Next step for Judy is to have her device removed. We're going to do this in two parts. In one part we’re going to remove only the device that's inside the chest that is the pacemaker itself. It's sitting below her collarbone and we're going to then listen to her brain for one week via the wire that is coming out of that pacemaker and listening to Judy's brain may have valuable lessons for us to learn on how to implement deep brain stimulation in the patients to come. This doesn't really offer Judy any more benefit she's doing this to help us learn, that is Judy’s altruism right there. And after one week of listening to her brain we're going to take the rest of the device out so that she doesn't have anything implanted in her anymore and then she will continue to do her daily work with her granddaughter coach to be able to sustain the benefits that she has gained during this year without letting them wean over time.
Kyle: Do you think that DBS for stroke is a game changer? Is it going to be? Is it too early to make that determination now?
Machado: It's probably too early because Judy is the first one that we see this type of recovery, right? Now, if we can make many Judy’s, if we can achieve the level of success that we have seen in Judy and we can replicate this across several other patients then we have obtained something that I would call a game changer that would be very meaningful to the life of patients that are affected by stroke.
Kyle: I know that we're still in the clinical trial phase right now. How long do you think until it could be become widely available for patients?
Machado: Years. This clinical trial will take some more time to complete. We have two, three years of clinical trial ahead of us and that if we see a consistent result, if we see that we can reproduce the effects that we saw in Judy in a few more patients, that's what we're shooting for of course, then we'll be very happy because we have been able to help a few people now and we will probably need to expand this to allow other organizations to learn from us and to achieve the same results in other hospitals. At that time, you gain the scale necessary and the knowledge necessary to make this a standard treatment. And this is pretty much how it worked with Parkinson's disease, started small before it became a big standard treatment that allows thousands of people to be helped every year. That's what we're aiming for.
Kyle: So Judy could be the pioneer patient, right?
Machado: She is, not could be, Judy is the pioneer patient. If this continues to work as we expect it to, if we can continue to help many patients like we have helped Judy and we learn which patients improve the most, which patients perhaps didn't improve as much, and we can narrow this down to the right group of patients or tweak the stimulation in a way that allows more patients to be consistently helped. This will be a legacy that Judy will be leaving behind. She was the first one to take on the lead so that others can take advantage of the knowledge that she's leaving behind and hopefully benefit just as much.
Judy: That was my goal, to help other people so they don't have to go through all this.
Kyle: Judy, have you ever played Go Fish?
Judy: Yes. All the time.
Kyle: All right, we're going to play a little game of Go Fish. So, if you want, you can take the lid off of our fishbowl. Judy go ahead and reach your hand into the fish bowl mix up the cards, draw out one, read it and give us your best answer.
Judy: What advice do you have for others who might be afraid to try a clinical trial? My advice is, I think you should try it. It's a lot of hard work, it’s not easy. You got a lot, to do a lot. It feels like a full time job but you got to do it if you want to get better. Gotta keep going.
Kyle: And you're glad you did it right?
Judy: I am glad I did it. I am happy.
Kyle: All right. Another question.
Judy: What was the most exciting moment after the DBS was turned on? When I could start moving my fingers and my hands started moving. That was, that was exciting ‘cause you know they were always curled up, everything was, it wouldn’t straighten out.
Machado: You could not open your hand?
Judy: I couldn't open my hand. So, when I could do that for the first time, reach out and grab something that was exciting.
Kyle: Probably makes you appreciate just the little things in life.
Judy: It does. The little things. You don't realize it. You know, I'm right handed anyway so it's more dominant to reach with that so I got to make myself use my left hand. Even then you know you still used it and you never paid attention. Now you can really still do it and I can turn and twist and that makes me happy.
Kyle: Pretty soon you'll be able to throw a baseball right?
Judy: Well, I can actually throw it under hand. I can't throw it still over hand.
Machado: You can throw underhand?
Judy: I can throw it underhand but I can’t throw it overhand and it still falls down in front of me but I'll get there. You know in the summertime we live outside so you know I'll be out there throwing balls.
Kyle: The grandkids are going to want you to be playing with them.
Judy: What was the most difficult moment for you? Making the decision to do this. It was a little scary but I did it and I'm happy I did it.
Machado: Judy can you comment on that? Can you tell us what, you have to ponder on this?
Judy: I did have to ponder. About a month I think I thought about it. I had to do a lot of praying and heavy thinking, what should I do? And I was like well, if it's really going to help somebody else, I think that's a good thing to do.
Kyle: Was there one day you woke up and you felt like you had peace in your heart about doing it?
Judy: Yes. After I had said all my prayers and thought what should I do? I thought, well the Lord brought me through, he's going to get me through this. So, that’s why I did it. I know I’m going to help somebody else down the line in the future generations, it's going to help.
Kyle: People can’t see us in here right now but Judy is moving her left hand all around right now. She used it to pick up the cards in our fishbowl. It's pretty remarkable.
Judy: What's one thing you took for granted before your stroke that you cherish now? Just being able to pick up my grandkids and hold them in my lap. I couldn't pick them up. Now I can reach down and grab them and pick them up. That's the best thing.
Kyle: Did your grandkids notice that, after the stroke?
Judy: Yes. They did, you know because they had to crawl up. I couldn't pick them up, I could only use one hand, they’d all have to sit on my right side. Now they can sit on my left side and I can hold them, I can hold both of them at the same time now, not just one, so that's the best. Cherishing that.
Kyle: Dr. Machado, I’ll give you the last word.
Machado: I will always defer the last word to Judy. You can't top that right? You can't top holding your grandchild, that’s really where it ends. I think that last words would be, the last words before the last words, the last words will be Judy’s. My last words not, not, not our last words, would be that it is very rewarding for all the researchers that have participated in, in the last ten years in this project to see you improve, some of them you met, some of them you never met them, they’re in the laboratory toiling away trying to do this work. I think it highlights the strength that we have here at Cleveland Clinic that scientists and physicians, like myself, can work side-by-side to bring new treatments to patients. It really emphasizes our culture of working as a unit and it’s something that we just want to do more for stroke and for patients that suffer other neurological disorders so to see even only one person improve but someone that we got to know so well is the, gives us the enthusiasm to keep going because science is not always easy, right? There's a lot of failure in science. It's beautiful to see Judy improve. And that gives us the motivation to keep doing what we do in the laboratories and in the research projects that we that we always try to push ahead. Would you like to close, Judy? Giving your perspective on research to the people that are in the laboratory.
Judy: I never really thought about it before, you know, all the research that goes into this and it's a lot of work but I'm happy I did it, just to make the improvements that I've made. You know I didn't even think I was going to be this far in a year but I’m glad. And I think that research is a big, you never thought about you know, stroke before you know, I never knew anyone that even had one. So I'm glad I did it. And I can move and I hope I'm helping somebody else further on down the line that will be the best.
Kyle: Judy's got a big smile on her face every time she talks about it.
Judy: I do, because I'm just happy that I did it that I can move now.
Kyle: That's great. That's great. Thank you guys both so much for being here today.
Machado: Thank you.
Kyle: And thank you everybody for listening today, you can find additional podcast episodes on our website, clevelandclinic.org/podcasts, on iTunes and Google Play.
A medical journey can be a transformational point in someone’s life. Tune in as Cleveland Clinic patients, together with their physicians, share experiences of perseverance and determination. In their own words, hear how these health heroes have made the ultimate comeback.