In this very important episode of “Life After Stroke with Christopher Ewing”, Christopher speaks with Dr. Jason Hinman, Assistant Professor of Neurology in the Stroke and Neuro-rehabilitation Divisions at the UCLA Stroke Center in Los Angeles, CA.
Topics covered in this episode include:
– Does stem cell therapy work in stroke survivors?
– How is stem cell therapy performed in the body?
– Is stem cell therapy safe?
– Are there any particular stroke deficits that stem cell therapy will not work on?
– Stroke survivors and the increased possibility of dementia?
– What type of clinical trials are taking place that are centered around stem cell therapy?
– How can I volunteer to be a part of a clinical trial?
– Are the clinics that currently advertise stem cell therapy for stroke safe?
Video Transcript:
The following is a recorded program of an actual stroke support group. The comments expressed are the personal opinions of the participants and not necessarily the opinions of the producers, sponsors or the broadcasters of this show. This program is not to be used as a way to diagnose or treat any medical condition that you may have. Please consult your doctor or health care professional before making any changes to your current medical routine, stroke, stroke stroke. It comes out of the blue, sometimes without warning, but those who survive it should never lose hope.
A stroke can be life changing, but it is also a new beginning because for all survivors there is still a beautiful life after stroke.
Hey everybody. Welcome to Life After Stroke. I’m Christopher Ewing, today we’re broadcasting from home base, which is Providence St Joseph’s Medical Center in Burbank, California, and with us today we are very fortunate to have an outstanding guest. I heard him lecture about a month ago and I was like, “okay, that’s it. I gotta get you on the show.”
His name is Dr Jason Hinman, and doc why don’t you brag a little bit rather than me, try to give your whole list of accomplishments.
Uh thanks christopher thanks for having me on. It’s really a a pleasure, and this is such a valuable resource for patients living with stroke to have available. I am an assistant professor of neurology at the University of California, Los Angeles. I did all my neurology training there, specializations in stroke and recovery after stroke, and I run a small research laboratory that’s focused on the interface between strokes, reprovascular disease and dementia. In addition, I run several or have participated in several clinical trials, uh, aimed at understanding the role of stem cells in stroke recovery.
Well, you know i’m going to kind of dive right into this because this whole thing of stem cell therapy just really fascinates me and um. I’m going to kind of be like the kid in the back seat on their way to Disneyland and say doc, “Are we there yet?”
No, absolutely not that’s a common misunderstanding and there’s a lot of misinformation about stem cells out in the community online and various resources that are available to patients after a stroke. We are just now beginning legitimate, uh, well-controlled clinical trials to understand the efficacy of this type of a treatment. So there should be no misconception or misunderstanding or false sense of hope, provided at this stage. It’s an attractive and emerging possibility that we can repair the brain after stroke using stem cells.
But we have to prove that in patients and make meaningful advances in recovery. For those individuals living with disability, until we prove that uh, it’s it’s not something that is available just yet for patients, i see, when did it start to kind of come on the radar that stem cell therapy was even possible to be used on stroke, survivors yeah? That’S a great question: i think the first uh challenge or observation that was meaningful. Uh was maybe about 20 years ago, when we started to really uh understand. The brain is is not as static as we used to think of it, as the the old dogmatic thinking was that the brain uh you know, develops during childhood and then you’re essentially stuck with it uh whatever is there?
Is there the circuits, the the cells uh? If there’s an injury, it’s permanent and that really wasn’t true from observation of patients. But there was a disconnect between the science and the understanding at the at the cellular and molecular level what’s going on in the brain after injury and what people were seeing and experiencing. After brain injuries, and as that as those fields merged – and we started to understand that, in fact, we could change the brain. In fact, the brain does change quite a bit after injury, including stroke.
Then it became clear that all we needed to do was develop appropriate strategies to modify that to augment that process. The brain has an endogenous or existing ability to repair itself, but it’s limited, and if we understand what those limits are, we can push them down and push past it. So another key observation – that’s relevant to stem cell therapy, was that the brain has its own stem cells and that they respond to and partially contribute to that normal repair process that that all patients experience to somewhat to some degree and from there it was a natural Understanding that we could then try to use that therapy modify it twist, it in ways that were that might be helpful uh and then the major hurdle that we’re facing now is: how do we actually do it? Where do we give them? How, when um, in what ways do we modify them uh and a critical concern that uh government regulatory agencies have is?
Is it safe right? You know, um a shout out to a really great friend of mine, dr cindy grimes. You may recognize her name she’s. One of the top cardiologists in the world and um – i think it’s around 2004 2005, something like that. Everybody was saying.
Oh, did you see cindy on television and i was like why was cindy and television and as she was on everything like cnn and cbs evening, news and everything else, because she and her team performed the first stem cell transplant into a human heart following an accident That a young man had had and it’s a long story, but she was on good morning america and all this other kind of stuff. I say all of that to say that cindy explained to me exactly what the whole stem cell thing is and how you get them and where they come from and stuff like that. But for those who are listening, who may not understand you know what stem cells are where they come from and how you harvest them and everything else, um kind of take us down that little layman’s path of understanding. Well sure thanks uh, so stem cells are uh. Can mean any number of things the body has a rejuvenative ability, um things like uh skin and the inner lining of our gi tract need to regenerate constantly so there’s a population of cells that exist in the body and regenerate and repopulate those tissues.
The best example of this and where stem cell therapy has been in use for a long time, is in the bone marrow where blood cells, red blood cells, white blood cells are made continuously by the bone marrow as a robust source of a step, a cell that Can become any number of different types of blood cells. The understanding of whether similar cells exist in the brain is, i would say, still somewhat limited uh. It def definitely exists in rodent models and smaller animal models, and the jury remains somewhat still confused about whether they actually are present the human brain. It’S not possible to observe them in the same way as we can in some animal models. So we’re left with you, know: post-surgical specimens from living patients that sometimes brain tissue is removed for tumors or epilepsy or other things, and the questions are uh.
We we think they’re there, but we’re not 100 sure that they’re there and, if they’re, in the same way, the cell retains its ability to become uh in the in the truest form, um say obtained from a fetus or a developing embryo uh, a cell that could Become any cell in the body, it doesn’t have the signals that drive it to become one particular type of tissue. Now, on that topic, it seems like i’ve heard that before where it’s like embryo cells are the best cells to use for something like this uh. I don’t know that that’s true in terms of the therapeutic approach, so, for example, in in blood disorders, we’ve used bone marrow derived stem cells for a long time, and you can kill someone’s bone marrow cells with chemotherapy and replace them with someone else’s. It seems like i remember, reading something about where they were taking something from um umbilical cords or something like that, and that’s right, so umbilical cord stem cells are very similar to fetal stem cells. We think in the way that they have the potential to develop into any different type of cell in the body, so you just kind of take it and smack it in there and fill in the hole.
That’S left or something like that. Well, the last uh, 10 or 15 years we’ve understand. We now understand the molecular signals that tell a cell how to become what, and so we can do now is take skin cells. Um revert them back to a sort of embryonic stage and then tell them what type of cell to become by providing particular clue molecular clues at different points of their development and so for the brain. We think that cells that look like nerve cells or cells that look like the support cells of the brain called glia might be the best, but there’s ongoing stem cell trials in stroke for stroke recovery that are using bone marrow derived stem cells.
So i think the jury’s out on what type of cell might be useful now when you gave that excellent lecture uh, like i may have said when we went on the air, i certainly said it before we went on the air um. I met dr hinman at an outstanding lecture that he gave at california rehab institute, which is the rehab hospital i was sent to after i had my stroke and you had some really interesting research uh data from, i guess different groups that had done some. You know, studies on the use of stem cells and stuff like that they were from like all over the world. Um talk a little bit about some of that, because she had a really great presentation. Uh.
That talked about some of the successes. You know some interesting success rates which keeps people going forward in this research right, so uh, i think again, there are several important questions that that still need to be answered. So one is what’s the right time to give stem cells um. If, if we’re going to pursue that as a therapy, what’s the right timing and i think um since i’m in a room full of folks who’ve had a stroke. I i think that it’s clear that the first 24 hours is probably not the right time.
That’S the time when you’re getting acute care, you might be receiving blood thinning medicines. If you’re having an ischemic stroke, you might be undergoing a catheter-based thrombectomy procedure if you’ve had a hemorrhagic, stroke, you’re under intensive blood pressure control, with usually with intravenous medicines. You might have to have a surgical procedure to remove the blood, that’s in the brain, so it’s not the right time during those first, probably 24 or maybe even 48 hours after a stroke to even think about recovery at that time. What we’re thinking about is. Do we get blood vessels back open, stop bleeding in the brain, make sure there’s no swelling so the right time, then, is probably no sooner than say.
Let’S say 48 hours after stroke, there haven’t been any trials that have really addressed uh before that uh and so a group. It’S a us-based company, they’re focused on using a bone marrow derived stem cell product that and then administering intravenously in the first few days. After a stroke, that was my other question is: do you go into the vein? Do you go directly into the head? How do you yeah so several different approaches have been tried.
Um, the other major approach, that’s uh, currently being tried. Uh was tried earlier um uh in the past couple years and is undergoing uh. Continued study is intracranial administration of of stem cells right into the brain, with the idea of what you’re doing there is getting them as close as possible to the area of injury in the site of recovery. It’S not clear whether stem cells administered intravenously can make their way into the brain. That’S unclear!
We don’t have a good way of tracking them. There are some efforts to to do that using um, basically making them have a small magnetic signal so that we can see them on an mri scan, for example, but that that work is not ready for prime time clinical use yet uh. But so the the shortcut around the the blood-brain barrier, getting access to the brain is to uh just put them straight into the injury site and that’s been tried. Um, a major trial that we participated in at ucla, and i think several other places around los angeles participated in was called the actisma trial. That was a sponsored trial from a company called san bio and a joint venture with a japanese company called sinubian that have um a stem cell product.
They were interested in testing they administered intracranial implantation of stem cells in the brain. In about 150 patients. The formal results are not out yet, but it did prove to be a very safe procedure, uh so in in those 150 patients. I think there was less than five percent of of significant uh adverse or significant side effects um and the degree to which that helped recovery uh is uh still unclear. We’Ll have to see what the official results look like.
The point of the trial was to show that on the surface, this somewhat radical procedure is safe man. This is so heavy um. You know we’re going to take a break and when we come back i know i have a couple of questions for the doctor and i’m sure that some of our stroke survivors here do as well. One of the questions i have is: are there any particular deficits that stem cell therapy will not work on and what type of stroke survivor is best in some of this therapy, ischemic stroke survivors, hemorrhagic, stroke survivors. Is there a difference as to what type of stroke you had that may benefit best from stem cell therapy, and things like that, so we’ll get those answers from you right after the break life after stroke is part of the i heart radio, podcast network search and Follow life after stroke on iheartradio or subscribe to the show, wherever you listen to podcasts, so that you never miss an episode also be sure to download the new stroke channel, dot tv app available free from google play or the itunes app store.
[, Music, ], hey everybody. This is christopher ewing from life after stroke and there’s something new we’re launching that we are very excited about. We are launching the life after stroke online support group. This is a weekly support group that is held online for those who don’t have access to a support group in their area or who are unable to attend a support group because of physical limitations. The group meets each week online at www.
hestrokechannel.tv or on the stroke, channel dot tv app and is open to stroke survivors, as well as caregivers for more information and to sign up to be a part of this really cool online support group just go to www.thestrokechannel.tv. That’S thestrokechannel Tv and i’ll see you soon during the life after stroke online support group.
Hey everybody! Welcome back to life after stroke, i’m christopher ewing. Today, our guest is dr jason hinman. He is an outstanding authority when it comes to stem cell therapy in the world of stroke, and things like that. You know.
One of the questions i had doc is. It seems like a lot of research centers around ischemic, stroke, survivors and not so much with hemorrhagic stroke survivors, like muscle so i’m going to selfishly ask – is that something that is just kind of part and parcel to research itself in the stroke world. It just seems, like i remember, even listening to some of the the data that you presented in your presentation, that a lot of it a lot of these other groups that were doing some of these. These research studies all did them with ischemic stroke survivors and it all kind of cut off at like the 12-month period you know stuff like that um. Why is that?
Well, one somewhat frustrating aspect as an academic is that you know, because i see all types of patients after stroke and the issues that they’re dealing with often do directly relate to the type of stroke they initially had. The challenge with this type of emerging therapy is that um, the drug companies are the ones that the pharmaceutical companies and and um stem cell therapy companies are the ones that are really driving um. The the research at this stage and the reason for that is, it’s really expensive. The trials take up to you know, typically following one patient for six months, sometimes a year to get enough patients. It’S usually takes two to three years to do a study across multiple sites and what so their motivation then um, which is not you know, gets a bad reputation but is realistic.
Is that they’re trying to develop a product that then can reach the most number of patients? And since 80 percent of patients suffer an ischemic stroke? That’S the major focus of the research. You asked before the break a question about the types of deficits that are most studied or most likely to benefit, and it’s not clear that they’re most likely to benefit, but the ones that are most studied are motor recovery. So the ability to move um, mostly because we have pretty good scales for measuring those things, so it’s easier to put they’re still flawed, but it’s easier to put objective measurements on them in terms of whether patients are getting better.
Can they do things that they couldn’t previously do, like? You know, walk 10 meters faster than they used to, for example, or another test? That’S commonly used involves grasping and handling small objects with their hand and there’s a you know, well validated scoring system for that. That, then, can be used to judge whether the treatment is efficacious between two different groups, for example. So that’s going to continue to be the most fertile ground for this type of research and i think the idea is that we can’t do right now, much of anything to make people better in any domain, cognitive or motor or whatever.
So, let’s start with the easiest ground truth of mobility and then, if we can improve mobility in some way, then we can start to study whether there’s effects on cognition or other things of that nature. Now you guys in your group, are doing some really dynamic. Uh, research and studies and things like that uh brag a little bit um. So you know, as um part of the work i do is is running is running the stem cell trials and we’re engaged now in a trial called the pisces three, which is just now starting. I think we’re ready for an open for enrollment um.
You can search it on the web. It’S easy to find. That’S actually how you get uh, how your eligibility is determined for the trial and we’re happy to to help you through that process. If you’re interested um – and i think maybe we can put my contact info somewhere online or something like that – um but my research group um – is primarily focused about at the interface between stroke and supervascular disease and and cognitive impairment or dementia, and increasingly we we now Recognize that the the vascular tree of the brain probably plays a very significant role in uh. The molecular events that ultimately lead to alzheimer’s disease and cognitive impairment, whether it’s purely due to stroke or whether there’s some overlap between those pathologies that we associate with.
That type of dementia and uh and the the primary stroke injury or the vascular injury that happens to the brain, if you have say long-standing hypertension. So is that to say that somebody that has a stroke is more likely to develop dementia than another person who didn’t have a stroke. Yeah, that’s clear! It’S about a one and a half time, a little bit less than one and a half times risk of developing dementia. It varies depending on your racial ethnicity, um, where you live in the country, access to health care um, but all comers it’s about 1.
risk. So about 40 increased risk of developing dementia if you’ve had a stroke in the past, and we don’t understand that process. The anat, the national institutes of health is just now launching a major initiative. Uh that’ll run through a network of hospitals that they’ve organized over the last five or ten years to study stroke. The last five or ten years have been focused on new and emerging treatments for a stroke and that’s been fairly productive.
We know we have had some major advances in the acute treatment of stroke such as thrombectomy, but what we don’t understand is very much about is what happens to patients after that, and so the nih is starting a major initiative. It should be active and functional later. This year, to really get some more granular detail on what’s happening to patients, and the goal is to study upwards of six to eight thousand patients after stroke across the country and learn something about particularly about their cognitive impairments, but also, you know, we’ll also be able To learn: where are they going uh? How long are they staying in rehab um? You know what are the risk factors that that that really drive the increased risk of say, cognitive impairment or dementia after the stroke so that’ll, be, i think, really helpful to understanding some of the the harder to get a grip on domains.
Like you know, memory cognitive function getting back to work. Those types of things now with your pisces three is that what it’s called? That’S correct, your pisces three study. What are you guys finding preliminarily um at this point? Well, so this version of the trial is just getting underway, so we at ucla haven’t enrolled any patients yet um nationally.
I’M not aware of the current enrollment. There was a prior version of this study, um, it’s being sponsored by a uk company that has a um a fetal stem cell product uh that they are uh hopeful about um. In the earlier version referred to as pisces two, there was some hint of a success. Um in terms of patients who had some motor ability after their stroke and received the treatment, they were about 30, more likely to get some uh improved mobility on the types of scales we talked about mostly upper limb, uh mobility, and so that’s given them enough. Um uh, head of steam to move forward to a broader trial and bring it to the u.
to try to get fda approval. So that’s the plan, you know, that’s my other question. Was you know what has given people like yourselves uh, you know. Doctors, like you, um enough of an interest to think you know what there could be something to the stem cell stuff. Where did the smoke originally come from that people even thought that this was possibly something that was going to work well, like with many other examples.
Um, including various types of drugs, there have been some dramatic successes in animal models, primarily just with animals, so-called the pre-clinical models of stroke, uh that have shown uh fairly robust results, but we can cure a stroke in a mouse or a rat, and none of the With drugs and none of those drugs have translated into human research, i think that um, human research or human benefit they’ve translated into human research and all failed almost universally. Now. Why would that be? Well? One of the reasons i think that’s become clear to me over the last uh, three or four years, is that um there hasn’t been enough attention paid to the types of diversity uh that exists when you study humans between come from different ethnicities.
Exactly when we do a pre-clinical study on a drug give it to um, you know perform strokes and animals and then give half a drug and half of saline or some placebo treatment. Almost all the mice are they’re actually related to each other, um they’re bred in a way that they’re often cousins or second cousins, and so you really don’t have much of the kind of diversity that we see at the human level. So that’s being recognized, there’s also an idea that uh, you know. One thing we commonly do in clinical trials is often get patients from different hospitals, often in the same area. Sometimes around the country.
Sometimes around the world. Every place has slightly different habits and things are different in ways that are very difficult to control for and so there’s been a movement reversing that back to the pre-clinical studies in animals. Can we do that in the animals? Can we use different types of animals, different so-called strains that are have different genetic backgrounds? Can we do it in different laboratories around the country, everyone’s getting the same drug, but we’re trying to develop a system that mimics the clinical trial experience just in in the drug discovery phase yeah, you know here’s a question for you: why was it decided that mice Would become kind of the barometer for what would work in humans?
I mean. Are we even that even remotely close bodily to a mouse to be able to know that no uh? I think that so they’re? Were they just so insignificant because their mouse – let’s just use them, yeah a lot of drivers for that, but one is that they’re fairly cheap? The second is that, for some reason they became a good model and we learned a lot about their genetics, which made it easy to study how different genes or molecules manipulate different genes or molecules in a way that we can learn something about those.
And they do share a fair amount of genetic information with humans being in the mammalian tree, but from a brain standpoint. Um there are several significant limitations, one their brain isn’t folded. The way ours is um, so that’s a significant difference. Um. The second is that their uh, their blood flow system, is actually substantially different than the human in terms of the amount of blood flow.
The redundancy of the blood flow is different. How the brain reacts if you block an artery, for example, is totally different in in both mice and rats than it is in in humans. Um, most drugs that end up making it into an early clinical trial at some point, get tested in primate models. But those are very expensive. Um are issues around ethical, human, ethical, primate, research that are that are addressable, but but real, and so you know oftentimes, particularly for diseases where there currently is no therapy.
Sometimes, making that jump from a lower animal uh directly to humans seems reasonable to everyone. I mean it just seems like you’re using the wrong example. You know if you’re, if you can cure stroke, not just make it, you know a little better, but actually cure a stroke in a mouse and then, when you apply it to a human, you can’t even get close. It seems to me you’re using the wrong animal to try to test. You know for something strong.
Is there a better animal that you think would be? You know i hate to you know be an advocate for using animals. You know i mean, but i guess that’s a whole other show um, you know, is there a better animal to use? Well, i think some one of the things and one of the things my research group has focused on is whether we can try to mimic some of that diversity that we see in patients um. You know what happens if you put a stroke in an animal that is predisposition to get alzheimer’s disease, for example like some of our patients are.
But what, if you put a stroke in an animal that is overweight or has diabetes or has high blood pressure? The way most of the patients that are walking the door with stroke have had those problems and often for a long time. So i think some clearer understanding of uh what we’re actually seeing at the bedside and then trying to model that in the preclinical models, is probably the right approach. Wow. Well, i know that there’s a number of people here that have questions so um we’re going to take another quick break and we’re going to get to those questions.
So everybody sit tight, we’ll be right, back hey! This is christopher ewing, and if you live in the houston area, don’t miss the 2019 abilities expo august, 2nd through the 4th in houston, texas. The abilities expo is a nationwide trade show dedicated to highlighting products geared to those who may have a physical disability or motor function. Impairment abilities expo, brings exhibitors from around the world all under one roof, allowing visitors to see up close some of the wonderful products that are out there that can help make life easier admission to the abilities expo is free and the life after stroke, radio show will Be broadcasting throughout the entire weekend from the stroke channel, dot tv booth so be sure to stop by and say, hi i’d love to meet you guys and if you live outside of the houston area, the abilities expo is held all across the country, so chances are It’Ll be coming to a city near you, so just go to www.abilities.
om for upcoming, expo dates and for more information, and i look forward to meeting you at the upcoming abilities expo august, 2nd through the 4th in houston, texas, hey everybody! Welcome back to life after stroke. I’M christopher ewing and our guest today is dr jason hinman and we have a question. I have had two carotid arteries strokes, one in the morning and one at night, uh nine years ago. I i know no step sale reserve was done with me, but i written four books and have five or six more to go and i have been better caucus fully uh cartis, oh yes, cod knit typically after the stroke are better and better and better.
I don’t know how you explain that mm-hmm. Oh that’s an excellent question. I think one of the keys that i usually advocate in my patients to help promote their recovery, whether they’re eligible to participate in research or not uh, is what i call task-based practice uh. I asked patients typically to make a list of two or three things that they have trouble doing after their stroke at the beginning, that’s often simple things like getting out of bed uh or walking. You know to the bathroom as you get further away from your stroke.
Deeper into your recovery, that list can change to things like getting back to work, that’s right, being productive, etc, and so i usually ask them to make a list of those three things and then uh figure out how they can practice those things if they can’t make All this okay, how can you not make a list? I my right hand doesn’t work. Oh well like i am right-handed and you write all those great books, dr parker, you can make a list just check it out can make a list on the computer, but not uh, i’m not all this by hand. Well, i think that’s what dr hinman’s saying, though you just kind of make a mental list of all the things that you want to try to accomplish, and then you just kind of go at it. You know and start checking boxes and what i typically advocate is then to approach those things.
The way you would um do at the gym. For example, if you want your biceps muscle to be bigger at the gym, you have to do curls with a weight to make to test the muscle and make it stronger and the way you do that is you don’t go once and do one curl and then Come back a week later you go and you do 10 at a time and then you take a short break and you ten more at a time, and then you go to the gym three days a week or more and you get stronger over that period of Time so, if you have a list and an approach like that and then find something, you can do to practice that repetitively uh it. It can often be very helpful because that’s the way the brain works just like a muscle, it has a circuit, that’s right, and if you work out that circuit make it active, then it’s more likely to become a permanent and stronger circuit kind of like how do You get to carnegie hall practice, practice practice exactly, and so it can be overwhelming. After a stroke when you have you know you can’t get up out of bed or go to the bathroom. But yes, but i couldn’t walk, i couldn’t talk, i couldn’t swallow and and so obviously you know you often times the earliest phase, you need the help of rehabilitation specialists to help you sort of work through those things that you were taking for granted before the stroke.
As you get further on or deeper into your recovery and obviously you’ve made an excellent one and, as you pointed out cognitively, you feel like you’re even better than usual. Oh yes, and i would argue, that’s because you’ve been able to focus on those activities, maybe more so than you were before uh with uh and because of that dedicated effort, you’ve, you’ve seen improvement and maybe even productivity. Now you know i’m going to say this. You know because i, when i first had my stroke, i heard that you know there’s like that three-month window and then that six-month window and then that one-year new normal, that’s what you get and you don’t throw a fit and that’s it and through doing you know All these shows and meeting all these stroke, survivors and stuff, like that, i have not met one. Even to this day, i’ve not met one stroke survivor that has told me that yep at the one year point that’s what i had and now i’m three four five.
Ten years in – and i ain’t got one bit more than i had at one year – um tell me what, where you’re at on that i mean so i mean doctors notoriously, are really bad at even predicting things we, you would think, are as simple as life expectancy. Um, we’re probably way more horrible than that on things, like you pointed out, recovery after stroke, um that the rubric that you mentioned is the one that is sort of taught and expected um it’s it’s not the one that we observe uh, as you pointed out, because They don’t research these survivors long enough, that’s part of it. Uh, that’s, definitely part of it. We don’t know very much. It is hard to to do that.
Research, because um patients often dissipate across different care settings and things like that. So that’s one big challenge: that’s decreasing, as we have increased contact through social media, email, telemedicine. We can stay in touch with people, and so i think, that’ll change. The other thing is that i think the reason that rubric exists is because people are generally most. Doctors.
Are thinking about the basic recovery things and at a year, most patients have gotten back on average 60 of their function and that’s not a really domain specific uh estimate. So the things that people are struggling with are the ones that are much harder to measure back to work. Cognitively intact memory, uh social engagement, they’re, they’re, less often walking moving you’ve compensated. Usually, if you have a persistent disability, but those other things are much harder to measure and and even advise patients on what it is to do. That’S the right thing and i think it varies very much from patient to patient, and so that’s why i advocate for that sort of personalized task-based list.
I don’t know what you’re struggling with. We can talk about it in for 15 minutes in clinic, but you live with it, make a list figure out what it is that you can do that that what you’re having trouble with on that list and then come up with some task that can help you Practice that, and in some cases it can be very challenging. If it is, you know you want to go back and write a book or um, you know or do voice over. If that’s, if your voice is affected um, but there are ways to practice that and practice will get you uh improvement. It may not be 100, but it’s the only way to repair the brain.
Sure sure, good point, good point: gene you had a question. Thank you. You’Re welcome, let’s morph into two questions. Now. First of all, uh stem cell is not necessarily the same.
So what sam south are you talking about yeah? So i mentioned earlier: there’s there’s uh some con, some uh different approaches that are being tried. Currently uh uh, the because most of the research is industry sponsored they often will not give precise details about their product. The same way a company you know developing a drug. Might not share the chemical structure of that drug until they get a product to market.
The current approaches that are in use, um in in research, are a bone marrow derived stem cell product, a stem cell product that is from bone marrow, but modified in an important way to make it more supportive for the brain and then the third is a fetal Stem cell product that is again modified in a way that that the company believes is supportive for uh for the brain now uh as far as therapy with the center. You talk about putting in blood vessels and also to talk about working in the brain which is best for each application. I i think it’s not clear. I think the the intravenous administration is likely to be much safer, um the well the risk of what you can say now, uh, what the the risk of side effects or adverse events with the intracranial or inside the head treatment. Uh was low.
It was not as low as the one observed with intravenous treatment, so there’s definitely some risk, but that risk is fairly minimal. On the on on the spectrum of neurosurgical procedures, it’s quite minimal all right when you go bachelor, you don’t really know where the sensor goes. To you uh, no, you don’t uh, that’s that’s an important thing and and right again right now, the current approaches have been um have been to do it intravenously through the elbow vein, the way you might get a blood draw when you go to the doctor’s office, Um, as you know, many patients for stroke are now getting intravascular procedures where a catheter is being snaked up into the brain blood vessel to remove an obstructing clot, for example. Maybe the right treatment is to give the stem cells right then, and there, when the catheter is right there inside the brain, where you’re you’re as close to the brain as you’re going to get well you’re in there shoot some stem cell in there. So it’s unclear that approaches has been tried in some preclinical models hasn’t made it to clinical trial research yet, but is an attractive possibility.
The second question is because of the research required you have to avoid the double blind study. So what do you do now? Yeah? That’S been an important consideration and a limitation of the early advances in the field, which is that, particularly in in the procedures where stem cells are being given intracranially inside the head, that type of a procedure is very difficult to blind for, and the blinding is important Because it’s how we know that the actually the treatment had the effect not going to the operating room, not getting the extra medical attention or the post-operative care, but just the treatment. And so the way that’s been tackled is to ask patients who are in the control arm to to do all those things to go to the operating room, to have a uh go undergo the pre-surgical preparation undergo a thin uh.
You know shaving of the scalp a thin um, a skin incision, then a a incomplete hole in the skull, um and and then stop uh, whereas the the patients are receiving treatment would have all that except they would have a full hole placed in the skull and Then a needle administration of the cells into the brain, but when the patient wakes up they they don’t know what happened. So that is, although um a big ask of patients participating in this, putting your head nothing put in there uh is. Is it really just? Unfortunately, a very essential part of making sure that this treatment – actually you know, has the intended effect, and so we really have to do that. Do the research in that way in order to make it uh fruitful, and i think that’s a good transition to something christopher.
We talked about earlier is that there’s a lot of misinformation about stem cells and, as we said, we said at the very beginning of of the podcast that there are no approved treatments right now, it’s under active research. So why do you hear that there are people who are actually getting this type of procedure done and are they getting it like, where people get botox and crazy stuff, like some of these little boutique thing in their basement or what in indeed, i hope they’re, not Getting in the basement, but they’re uh, there are some uh so-called stem cell clinics. I think they popped up mostly in the big cities. Los angeles is one place where that type of boutique treatment is definitely available. I’Ve heard of patients traveling to mexico, where there’s less regulation about treatments um, but i can tell you that internationally, there is not.
There isn’t an approved treatment. So if you’re doing that there often those places are looking for your money. Um oftentimes they’re advocating a procedure that is simple, so we know how to get stem cells out of the bone marrow. You do a hip bone marrow aspiration, like we’ve been doing for cancer treatment for almost 30 years. Um.
That medical procedure is is easy, fairly easy to do somewhat uncomfortable but easy to do and oftentimes what the clinics are doing are spinning those cells down and putting them back in your body. I don’t know yeah right you’re, just putting it back in. I don’t know what that’s supposed to do for your recovery um. I know what it does for a patient’s wallets, which is make it quite lighter and – and i think, if it’s not done in a very reputable way, there’s definitely potential risk for that. The more dangerous things that i’ve heard about or uh similar types of procedures, uh, where patients stem cells are withdrawn from their own body and then uh injected into say their uh, their spinal fluid through a spinal tap.
There’S been a few reports of cancers. Developing that way, um, and so i would i would definitely avoid uh any type of stem cell research that is not uh, sanctioned by um by the nih and there’s a good way to find that you go to clinicaltrials. Gov and type in the name of the investigator, the name of the hospital, the name of the study and you can find the legitimate registered information so about the research. Let me go here. I remember meeting a stroke survivor who was told that she would be a good candidate for stem cell therapy and things like that, and you know when you’re a stroke, survivor and you’re looking at limbs that you know you’re staring at a limb.
That’S just staring back at you and not getting it to move and you’re dangled this. You know shiny object that says: hey i’ve got this magic cure that will help that move again. You know you’re really filled with hope, um. If somebody at this point in where we’re at, if somebody dangles that type of hope in front of you, is there a reason to really be hopeful like okay, this could be or we are we just not that close yet like it’s not time to get excited That we’re that close to disneyland because we’re not there yet i i think we’re not there yet. I think there’s reason for hope that in the broad scope that this type of treatment can produce effective treatments for recovery after stroke, but they need to be studied in the right way validated and so that they’re available to the widest group of individuals.
But if somebody dangles in front of you right now that they’ve got a clinic over on main street over here and come on by put you down for two o’clock. No, no! I would not engage in that. Okay yeah! So that’s what i was saying you know.
So now we’re we’re on the road we’re headed somewhere. How long until we’re there do you think? How much longer do you think we’ve got daddy yeah, you know the the most uh um liberal estimate i could give would be six years really. I think that would be the absolute earliest that you would see: fda approved stem cell treatments and so, like my friend, who i met at this stroke, support group who was told that there was this stem cell therapy thing. That’S going on and stuff like that.
If someone is a stroke, survivor and they’re presented this opportunity, i mean you just said you know, i probably would do it um, but should they even look into it entertain it or are we just simply just not even close enough to even think that there’s anybody That could really be of any benefit in that department. Yet we’re not there yet okay, i wouldn’t think that that type of a treatment would be would be effective and potentially it could be dangerous. Okay and everybody listening. The only reason why i kind of wanted to keep going down that path, a little bit is because i hear that come up often, and that’s why dr hinman’s here today and you know a lot of you – might be approached with this kind of stuff. You might get literature in your email, you might you know all this stuff, and you know i mean here’s a doctor, that’s over at ucla.
You know doing this stuff day in and day out i mean he kind of knows how close we are, and you know i would much rather say trust him than you know some email that comes through. You know at the same time that says some prince over in some uber country has 30 million dollars and all they need is your social security number to get it out? You know i mean because that’s the kind of stuff you know you’ll get on these mailing lists. You know once they know that you’re on that that stroke path, you know i get all kinds of emails now about stroke and stuff like that, and you know it’s not to question the validity of any of it. But you know when you’re a stroke, survivor and again you know you’re kind of at a rock and a hard place.
I mean you’ll kind of believe anything. That’S coming down the road, smoking and um. You know you certainly don’t want to get into a situation where they’re taking more than just your money. I mean they could be taking your life. I mean, like you said, you know, there’s been cancer situations and stuff like that.
That have come up. The the other thing i would say is that uh i i would we’re definitely interested in having folks participate in research, we’re desperate for them. That’S my next question. I think that you, you definitely shouldn’t wait for you know to reach that one year plateau and say then what do i do, because the most of the fertile research is happening? We want patients in the first year when their normal recovery process is happening.
We want to help that so is there any detriment? If somebody wants to get in on some of this research, is it going to make them any worse if they’re there’s always that potential, but most trials are designed to have safety at the forefront, so there’s always that potential on an individual case basis, but in general There, the the truck the research is designed to be safe and to value safety um as as a foremost consideration and then secondly, the efficacy um. So i think that’s that you know not a not a major concern. Yeah, i’m a huge huge advocate for getting involved to people yeah. We want you to come and participate, so i think it’s a very challenging period.
After your stroke, you’re often seeing you know, you go from having one regular doctor to now having seeing a bunch of doctors in the hospital, then sort of having more doctor’s visits than you ever thought you needed in the first few months. You maybe wanted to go to rehab, and then you identify maybe oftentimes. You have more problems than you knew. You had some diabetes, maybe a cardiologist for afib um, but the time to start pushing for help and recovery is is as soon as you get out of. Rehab and and say ask your doctors what research is going on at various hospitals around the city?
What can i do to participate? How do i get involved? The more you push them the easier it is for them to go and say i have interested patients. Let me find out and what, if somebody is outside of the hospital, maybe not outside the one-year window but they’re, you know kind of post-stroke, maybe let’s say six months or something um. Is there a safe place that they can go to look into being a part of a research study?
I know you had mentioned one yeah. So clinicaltrials.gov is the probably the most accessible okay, it’s not a particularly user friendly website. But if you type in a few magic words uh, for example, you might type in stroke and los angeles you’ll – find the available clinical trials that have anything to do with stroke. Um that are in this area: okay, uh.
So it’s a very useful resource from that standpoint and of course you can uh i’m happy to have you check our website. I was gon na say because i know you and love you. You know tell everybody how they can find you and right so um. If, if you go to neurology.ucla.
du on the web, you can find information about the clinical trials not only for stroke but for all uh trials that ucla is participating in for any neurologic disease. We have this ucla stroke center has a facebook and twitter page um at ucla stroke, and you can find us on the web and there’s information about um. Our faculty are putting up information about breaking news in the fields that that might be relevant or we’ll. Also, eventually be posting clinical trials availability there for various types of things, uh, so there’s there’s definitely resources out there to to get more information, since we are still. You know, in your opinion, five six years at least out before you know we can say we’re there.
Um, what do you think are some of the best things that a stroke survivor can do to like? I know one of them, you said was practice and things like that, but um what? What really should stroke survivors really be, focusing on the most strenuously religiously, like don’t stop kind of thing yeah, i think the uh i mean so getting black with with your doctors uh following their recommendations. Um definitely is a foundational piece um getting as physically active as as your stroke will allow you to be. Um is also a key element of staying healthy.
Most patients who have a stroke have not been as physically active as they need to be, and so trying to really make that part of your lifestyle going forward is, i think, important, and then the third, i would say, is um uh is um. You know being aware that it’s easy to reach a plateau in your recovery and mentally pushing through that okay um, and that there really you know, doesn’t have to be a limit on your recovery. I guess that was my thought. Is that you, as a doctor, when you see some of your patients come in, you know post-stroke a year two years, three years, let’s say um and you see that they didn’t quite get as far recovered as you would have thought they would have when you saw Them originally, or something like that, what do you see is the problem as to why some stroke survivors don’t reach that pinnacle that you would have predicted they would have reached when you saw them early on uh. I often tell patients the hardest part is after you get out of rehab.
It feels the hardest when you’re sick in the hospital and then the rehab when you’re first getting back with some. You know early mobility, but the hardest part is after you don’t have anyone. Waking up in the morning – and they say it’s time for therapy and you really have to drive yourself to be self-motivated to get that extra bit. Uh! That’S there for you, uh once you’re out on your own and so trying to find ways to stay self-motivated.
Whether that’s uh coming to a support group where you can, you can co-motivate each other, which is a great idea, um or or you know, setting a goal for yourself. That’S getting back to something that you want to do. Um, i think, is the best way to sort of continue on on the recovery and be aware that there are plateaus and that sometimes that’s the body’s way of telling you to take a short break. But not stop. So take a break for two or three weeks and then regroup.
Your body will have adapted to some new gain you made, and then you have additional opportunity to to move up from there. How do you know when you reach those plateaus uh? It’S all it’s difficult for any doctor to tell you that i think you patients usually know that uh themselves, you just don’t see much more improvement or something yeah, yeah or or what you were doing before, isn’t making as big of a difference that you feel after Say a therapy session. So then, when you reach that don’t get discouraged and maybe take a break say, maybe i should take a break mentally. I need one and then, after a few weeks, go back and your body will have adapted to its new baseline and you can then identify a new goal to work on after that.
So you know everybody listening. That’S kind of an interesting point in that there is some level of recovery that doesn’t happen really not because it just wasn’t going to happen, it’s kind of because you didn’t make it happen. Really you kind of sat back and just kind of watched things go by a little bit and didn’t kick yourself in the tail enough to really stay at it and you maybe could have squeaked out a little more recovery and still can. If you just push a little bit – and it’s it’s much easier for me to say than for for for all of you to do but um, but i think it’s it’s something that that you can address. You know that you can work on well, and that takes me to my next thing, because you know, as we go to close here.
You know these guys have heard me say it many times to people who sit in that very chair that you’re sitting in right. Now, let me ask you this: would you want to be when you grew up when you were a kid? I actually want to be an architect. You want to be an architect, yeah, that’s very cool! Why did you were you like good at drawing and stuff like that, yeah i like drawing and uh and uh i liked sort of uh so feeling like i could do a road map of something i knew and then i like to build it a lot of Legos and things like that, and so when did that change, when did it go down this path, uh, so um?
Actually, the the year between my junior and sophomore, my freshman and sophomore years of college uh, i needed extra money to pay tuition. I painted houses uh. I spent a summer in the hot ohio sun and i figured out that i better put my head down and study doctors make a lot of money. So i’m get this architect. I can come here doctor and i just figured out i needed to uh to do what i really liked and i it was around that time.
I knew the brain was the thing that i wanted to study. Well, i’m gon na say this and everybody knows i’m a criers and i might very well cry when i say this because one thing, that’s really blown me away in the midst of this little one year and two month journey that i’ve been on is that there Are people like you who wanted to be firemen? They wanted to be an architect. They wanted to be an actor they wanted to fly to the moon. They wanted to do anything other than be a doctor and for whatever reason you know lightning in a bottle struck, and you said you know what i’m going to become a doctor and i’m going to become a doctor.
That’S going to help people in the midst of a stroke and help them get their life back and everything else, and i say this to you as i’ve said to several other doctors that we’ve had on here: therapists and everything else. You did not have to choose this job. You could have chosen to be that architect and be out here designing buildings, but instead you’re sitting here in this room, you’re talking to stroke, survivors you’re talking to many through the phone to the microphone hundreds of people listening. Thousands listening to you right now talk about a level of knowledge that you chose to learn that you didn’t have to learn, and you did it unselfishly, because you wanted to help other people and help their lives, and i got ta tell you doc. I appreciate you so much man, i mean i was blown away when you gave that lecture.
You know a month or so ago, and i knew then that i had to have you on the show, because i’ve got listeners that needed you. They needed you and what you’ve learned, and i just thank you so much for the time that you’ve spent to become the doctor, that you are because again you didn’t have to. But it’s because of i mean we’re thrust into this. I mean we have to be stroke survivors because we are, but you did not have to be a doctor that helps us, but you did, and so i just really thank you on behalf of other people that you’re going to help all the patients that you’ve helped Already and everything else, i thank you for taking the time to be so selfless in the midst of helping us when we are most helpless. So thank you so much doc.
Really. Thank you. Thank you christopher. I do it a hundred times over so very happy to do it. You know it’s because you’re a rock star man.
I appreciate you so much um, thanks for coming on the show and everybody um we’re gon na have some information on the stroke channel.tv website, where you can get in touch with dr hinman and find out more about his pisces three study and all the other stuff. That’S going on with him and um in the midst of that you guys, you know just know that as usual, you know we love you guys we’re here, for you guys and, as i always say, there is still a beautiful life after stroke. This has been a recorded program of an actual stroke support group. The comments expressed are the opinions of the participants and not necessarily the opinions of the producers, sponsors or the broadcasters of this show.
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