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#82 Making Strides: Amputation & Prosthetics

Aristotle Domingo, an adaptive athlete, bilateral amputee, actor, motivational speaker, and founder of the Amputee Coalition of Toronto

October 7, 2020

On April 12, 1980, 22-year old Terry Fox dipped his toe into the icy Atlantic Ocean outside St John's, Newfoundland before setting out on one of the most inspiring athletic feats the world has ever seen. 40 years later, adaptive athletes continue to inspire movement and movements across the world. In this episode of Raw Talk Podcast, we explore lower-limb amputation, the phenomenon of phantom limb, and modern prosthetics. First, we sat down with Aristotle Domingo, an adaptive athlete, bilateral amputee, actor, motivational speaker, and founder of the Amputee Coalition of Toronto. Aristotle shared with us his amputation journey, from the difficult decision to have the surgery, to his ongoing work building and supporting the amputee community here in the GTA. Next, Dr. Amanda Mayo, a physiatrist with St. John's Rehab at Sunnybrook Health Sciences Centre, explained the common reasons for amputation and considerations for surgical planning. Dr. Mayo also described the funding challenges experienced by amputees in Canada seeking to make the most of modern prosthetic technologies. Finally, Dr. Jan Andrysek, Associate Professor of Biomedical Engineering at U of T and developer of the All-Terrain Knee, described the technical challenges in lower-limb prosthesis design, particularly to meet the rough-and-tumble needs of children. Dr. Andrysek also outlined his vision for the the future of prosthetics - it might not be what you'd think. Until next time, #keepitraw!

Written by: Jesse Knight

Aristotle Domingo
Amputee Coalition of Toronto
The AmpuTO Show Podcast
Dr. Amanda Mayo
Dr. Jan Andrysek's PROPEL Lab
Legworks and the All Terrain Knee

Aristotle Domingo [0:00] So January 10, 2017, I had my left below knee amputation. Right off the bat, I didn't think of my amputation at all as a disability. I felt it was more freeing to me and about the end of an era for me of thank God I have no more pain.

Jason Lo Hog Tian [0:19] You just heard from Aristotle Domingo, describing his first of two below knee amputations. Our topic today is amputation and phantom limb. Specifically we're discussing when amputation is performed, what are the changes to the body and mind, as well as phantom limb pain, which is often experienced following amputation. We also discuss prosthetics and related technologies, as well as accessibility and social integration. I'm Jason and I'll be your show host for today. There's a lot to cover. So let's jump right in. But before we get started, we'd like to acknowledge the land on which the University of Toronto and our podcast operates. For thousands of years it has been this traditional Land of the Huron Wendat, the Seneca, and most recently, the Mississaugas of the Credit River. Today, this meeting place is still the home to many Indigenous people from across Turtle Island, and we are grateful to have the opportunity to work on this land.

Aristotle Domingo [1:39] On my left foot, I had what they call an osteomyelitis. And what that is, is when an infection gets into your bones, and causes your bone to soften and break away eventually. Now I've been dealing with osteomyelitis for about 14, 15 years prior to my amputation. We continued to save the legs and the limbs because as the medical community know, you try to save the limb as much as you can to make sure that the person can still have use of the lump. In my case, however, we'd exhausted all opportunities to save the limb through continuous IVs, antibiotics, pain medication, and all of that. As a runner at the time, I couldn't really do anything that would keep me active. I was left a lot of times, just on the couch vegging because I'm been too much being to actually even walk my dog two blocks. So in 2016, around the fall of 2016, after having coming back to Canada as an expat, I had complained to my doctor that while I was away, I had a lot of bouts with an infection on my limb, that he took a look at it, and he said, What do you want to do now? Because we can chip away at the bone again and go on 10 days of antibiotics, and that's pretty much where we're at with this. And I said no, I think it's best to move forward and just have an amputation. And he said, Are you sure? Because this is a no turning back. Right. We've worked on 15 years of trying to save the limb. And I said no, I think I want to have this done. Now I think I'm done with what it looks like 15 years ago. And so he said well, I would like to get you to have a second opinion. So I went and had a second opinion with another doctor, and he said I think for a better quality of life, you're a great candidate for having an amputation. You're still fairly young, and we can go ahead with it. So January 10, 2017. I had my left below knee amputation. Right off the bat, I didn't think of my amputation at all as a disability. I felt it was more freeing to me and about the end of an era for me of thank God I have no more pain.

Jason Lo Hog Tian [3:46] Amputation of the limb is a surgical measure, which results in the removal of all or part of the limb, often because of injury, illness or trauma. We spoke with Dr. Amanda Mayo, who is an expert in physical medicine and rehabilitation.

Dr. Amanda Mayo [4:01] So I'm Amanda Mayo, and I'm a physiatrist, or a specialist in physical medicine and rehab. And I am the medical director of the amputee rehab program at Sunnybrook and St. John's rehab, and I treat patients with limb loss both as inpatients, so when they're just having their surgeries and getting fit with their first prosthetic devices, and then also in clinics, so people that have lost your limb sort of further back and just coming in for regular prosthetic care or limb or wound care.

Jason Lo Hog Tian [4:27] Dr. Mayo then touched upon some reasons for amputation, and what types and levels of amputation currently exist.

Dr. Amanda Mayo [4:34] So in North America and most of the world, most lower extremity or leg amputations are due to diabetes and vascular disease. In Canada, probably over 80% of amputations are occurring and people that have diabetes. And diabetes is also a risk factor for vascular disease. So we call those type of amputations, disvascular amputations, and they really result from complications of diabetes and or vascular disease. And these are patients that might have wounds on their feet that don't heal, or pain because they have blockages in their blood vessels to their feet or their legs, and that leads them to have amputations. Some people get really sick, so they might get a blood infection and they need to have the amputation to sort of control the infection and make sure that they recover. The next leading cause of amputations in North America is trauma. And that could be anything from a motor vehicle collision or workplace accident, or sporting accident. And then the third leading cause is cancer. And that would be like a sarcoma when we think of Terry Fox, he had the most common sort of type of cancer that leads to an amputation. Other patients may lose their limbs because of metastatic spread, so maybe a skin cancer that went to the bone or a kidney cancer that ended up going to the bone. So, so really, you're just amputating to get rid of the cancer so that the patients can survive and get on with their lives or the bony spread can cause a lot of pain and patients have amputation for pain management as well.

Jason Lo Hog Tian [5:56] We asked Dr. Mayo, what considerations go into deciding what level of amputation is right for a patient.

Dr. Amanda Mayo [6:02] There's multiple levels of amputation, and then we have sort of terms that we use, but both for the arms and the legs, or upper extremities and lower extremities. Sometimes it's because, it's due to the degree of infection or the amount of tissue that's involved. And so it was a patient and surgeon sort of talking together to see what the best level will be, so that it heals, particularly with our diabetic patients have vascular disease, sometimes we have to go with a higher level amputation just so that the the wound will heal. It's challenging, though, like for our leg amputations, the higher you go, the harder it is to stand and walk with a prosthesis. So if we can get by with a amputations that's not as high up, it usually leads to better functions for patients after as far as their ability to stand and walk. Some patients will, you know, just look at the whole picture. So we also have patients that maybe they had a foot fracture, and then they had multiple surgeries, for whatever reason, they have an infection of bone or something that's not healing and they might be offered a partial foot amputation, but recognize that there's a lot of good prosthetics that will allow them to run and sort of do more activities if they actually went to a higher up amputation, which would be below the knee. So in the shinbone, so I have a couple of patients that just look at sort of what activities they want to do, and then talk with the prosthetic team and myself to decide, hey, I wouldn't be better suited with a higher amputation, because there's more prosthetic options for me. Or the foot that I have that's remaining is really mal- like has deformities or a lot of pain associated with it, so I'd be better off just amputating the entire foot.

Jason Lo Hog Tian [7:38] We often hear about what's called phantom limb pain. What exactly is it? And is it common? Are there treatment options available?

Dr. Amanda Mayo [7:46] Yes, yeah, it's very common. But it's not common to sort of get chronic severe pain long term. That's more small percentage, I would say probably about 10%. But most patients after the surgery will have some element of phantom pain. They could feel like the foot maybe cramping or burning, very different from patient to patient. And I'd say it's still needs to be studied. And some patients won't even have a painful experience, it might be more of symptoms where they can still feel that foot. So we do manage it with pain medications, like nerve pain medications, typically. But there's also other techniques such as mirror therapy, desensitization, deep breathing and sort of mindfulness as well. Because you're sort of you have a new body map, right, so the brain is a little bit plastic. So we can use rehab and other techniques to sort of just let the body know that the limb ends here now. And that can help with sort of phantom pain and symptoms as well.

Jason Lo Hog Tian [8:43] And we asked Aristotle, who we heard from at the start of the episode about his personal experiences with phantom pain.

Aristotle Domingo [8:49] I had phantom pain, maybe a week or two after my amputation, In my description of it, it's like broken hot glass, going up and down my leg, from my amputation site, all the way up my leg, through the neck and into your head. So I have had moments while I was still in hospital, where I'll jump out of bed, which then causes more pain because you're still attached to an IV, you're, you're fresh out of surgery, and the shooting, pain comes up you and you jolt out of bed because there's that much pain. So that was expected. And I expected that for the two weeks, for the first two weeks I was in hospital. For both of my surgeries. I was experiencing that kind of pain. And it's funny because my right, two years later was experiencing the exact same thing. So my unique experience is my description of phantom pain is the hot broken glass going up and down my body, font starting from my leg, shooting all the way up to my head. So that's my description of phantom pain. Phantom sensation to me is the sensation of a foot or your limb that is not there. So not associated with pain, but the sensation of your ankle, for example, in my case. I could, and this is gonna sound really funny and probably weird for a lot of people. If I knocked my residual limb on a hard surface of my socket, I could really be, in my brain, tapping my ankle. And when I say that people are like, what am I guess I can tap on the side of my limb, the hard socket, and you'll be just like you tapping your hard ankle bone onto a hard surface. And it's the same sensation it's sending to my brain. To me, that's phantom sensation. Because all our nerves are still at that nerve ending, our brain still thinks that the foot is there, and the ankle is there in my case, right? So I can, I actually do it sometimes when I'm sitting down, is I will do it, just to give my, because I'm bored. And it doesn't bother me. And it doesn't bother me. So I know my foot is out there, I'm aware that my feet aren't there. So when I do it, it's more like, Oh, that's kind of fun. It's a fun feeling. I know, that's a weird thing to say, it's a fun feeling. The same thing with wiggling my toes, all my muscles will still do the same motion as if you wiggle your toes. If you wiggle your toe right now, you can tell your muscles moving from your hip through your calves, right to wiggle your toes. Although they're not there for me, but the same feeling goes down my thighs and my legs, because I thought of it, and now it's giving me the same feedback as if I'm wiggling my toes. So that to me is phantom sensation.

Stephanie Nishi [11:41] It sounds like whether it's pain or sensation, it's still something that you're experiencing. So how can we work to address it?

Aristotle Domingo [11:48] We just need to look at it more uniquely for each individual and say, yeah, this is this is what phantom pain is, you're getting phantom sensation. Here are some exercises you can do to maybe mitigate that. If I get phantom sensation now. I'll get it for like 5, 10 minutes, and I have ways that I do to sort of go, you're not there, I get it. You're itchy right now, but I can't scratch where you are. Right. And so I've done sensation therapy where you train your residual limb or your stump using different like fabrics. Different materials, like fabrics, tea towels, the you know, Velcro stuff like, paper even or a pencil prick to just kind of map out and give your your, your limb different sensations. So it triggers Oh, that's where this is. And that's where that is.

Jason Lo Hog Tian [12:38] We then asked Aristotle about any challenges he faced immediately following his amputation and with finding the right prosthesis.

Aristotle Domingo [12:45] So as in a PT after surgery, your your limb would be really big because of your swelling from the trauma you just received from the surgery. So limbs tend to be about eight to 12 months, by standards, or by the book before they have atrophied enough, that you could get a proper fit on your prosthetics. So during that time, the challenge for me anyways, and a lot of people too, is that we get frustrated because we just get fitted with a socket, and then three weeks later, it no longer fits. Or it's painful to wear, right. And then it gets worse when it's three months later, when you really need another one made for you altogether. Because you have to imagine you're starting your limb quite big. And as you atrophy, as your muscle atrophies, it gets smaller and smaller. So your starting point, with your prosthetic with a thermal prep socket, it's plastic, it's heavy plastic, so he can't, you can do a little or the proesthetist can do a little manipulation to that, where they can bend it a little and shape a little, but not enough to actually be supportive of your new size or your new shape. So then they will have to create another one for you. So just it's it's basically that. It's like you want to move on with what you're doing. But because of a non fitting socket, or an ill fitting socket, you can't really do what you want. Right. So for me as an athlete, and as a runner, sometimes I'm stuck on these temporary check sockets, and he shouldn't be running on a temporary check socket, because they could break they're made out of plastic and thermoplastic you put a hard run on that and it will just break apart.

Jason Lo Hog Tian [14:24] We also spoke to Dr. Jan Andrysek, an engineer and scientist with years of experience designing functional and affordable prostheses.

Dr. Jan Andrysek [14:33] So I'm Jan Andrysek, and I'm a scientist at Holland Bloorview Kids Rehab, which is Canada's largest pediatric rehabilitation hospital. It has a research institute, and that's where I'm situated, and I'm also a Associate Professor at the Biomedical Engineering department here in University of Toronto. In terms of the type of research that we do, and and the research is mainly conducted within the bloorview Research Institute within the hospital really looking at trying to develop technologies to improve and better the lives of children with severe disabilities, primarily focusing on physical disabilities, and even if we want to get more specific, a lot of sort of mobility and physical activity type of interventions.

Jason Lo Hog Tian [15:18] There are many challenges with getting used to a prosthetic. Dr. Andrysek spoke to us about how he uses biofeedback to alert individuals of any problems with their walking.

Dr. Jan Andrysek [15:28] Yeah, so so artificial limb itself is really just just a device, you can think of it as a tool that somebody is prescribed. And really, the effectiveness of the tool is only as good as in the way that it's being used. And so in terms of a prosthesis, we're talking about a lower limb prosthesis, a prosthesis that a person will need to walk on, there is training that's required as the child or the adult is provided this prosthesis, there's training, motor relearning, sort of physiotherapy related gait training that's provided. And that's, really the goal is to try to get the individual to use that prosthesis as effectively as they can, to try to achieve good walking patterns. So they're walking in a pattern that, you know, that that looks sort of typical to what you would sort of expect. And the reason why that's important is not just from the aesthetic point of view. But if those patterns are highly deviated, there can be long term implications in terms of musculoskeletal health, things such as back pain later on in life. And so it's really important that this training is provided. And some of the challenges within the healthcare industry is just delivering this training because it requires individuals to come to the clinic at regular intervals. And so what we're trying to do is using techniques of biofeedback is to augment the type of training that's provided. And our eventual goal is really to try to be able to build into these prostheses, systems that are able to cue the individual using for example haptics, or vibrations, when they are walking with atypical patterns, with less than ideal sort of patterns and trying to encourage them to correct those patterns in a similar fashion as a clinician may dowhen they're trying to train the child. And so really, right now, we're still at the early stages, but we're examining these technologies and trying to make them wearable and usable, and trying to see how well individuals are actually able to respond to the cues that these technologies are providing, and how well are they actually able to improve their walking patterns.

Jason Lo Hog Tian [17:37] As a scientist at Canada's largest pediatric rehabilitation hospital, we asked Dr Andrysek if there were any significant differences when designing prosthetics for children.

Dr. Jan Andrysek [17:47] I mean, there are certainly challenges in differences when thinking about children. And I mean, first off, they're they're a much smaller group than the typical population with lower limb loss, which tend to be elderly, individuals who just just want to kind of be able to move around and sort of attain limited mobility versus on the other side of the spectrum, you have children who really want to be able to explore and really push themselves in the physical activities that they do, and then to try to keep up with their, with their peers, and compete and all that. So the prosthesis, which is really a tool that the child requires to be able to achieve mobility and to achieve these activities, is really there to help promote and support the child and being able to do these things and fulfill their goals. And so the challenge is really just developing something that's functional, that works well with with the child with their physiology, and, and their anatomy. And second of all, as I mentioned something that's not going to cause them a lot of headaches, something that's going to keep working, despite how they use it, whether they get it wet, whether they get dirt into the device, you know, whether they they're jumping with it, or whatnot. And so, from a practical standpoint, the device just has to be really robust. And functional.

Jason Lo Hog Tian [19:03] A functional prosthesis is crucially important, especially with children who have an amazing ability to bounce back from injury, and quickly learn how to use it.

Dr. Jan Andrysek [19:13] Generally, yes, and part of it is the brain, which is able to sort of reprogram itself more, it's more plastic. So it's able to reprogram itself more easily and adjust itself to the new new system that the body is comprised of which now includes this prothesis. But children also have, you know, a lot of resilience and they also have a lot of motivation to pursue the things that they want to pursue and to, you know, as I said, to keep up with their peers, so these are real motivators for them to really sort of push the limits of themselves and have the prosthesis in many cases, as that's what we see sort of happening clinically.

Jason Lo Hog Tian [19:51] We often think of the future of prosthetics as high end robotic limbs, that can give you the agility and strength of a superhero, but the reality is very different.

Dr. Jan Andrysek [20:00] Really, there's a big distinction between what is sort of practical and useful and typically used by individuals, and what we sort of see in the media as state of the art devices, which really are not going to be accessed and obtained by many individuals. Most of these state of the art prosthetics are really limited to a sort of a small group of users. They're very expensive, and many of them are very complicated so they're also very difficult to sort of upkeep and over the long term, really impractical for the normal user, and especially for talking about children, simpler can be better. And so the standard device for children is oftentimes a very sort of mechanical, but a smartly designed mechanical component in their artificial lens that allows the child to be able to walk to be able to run to be able to do some of the sports that they want to be able to do.

Jason Lo Hog Tian [21:00] Much of the prosthetics research going on involves developing advanced robotic technologies. But are we heading in the wrong direction?

Dr. Jan Andrysek [21:07] As I mentioned, the evidence is really lagging behind these technologies. And sometimes there's more effort put towards developing new technologies, and maybe not enough effort actually testing the ones that exist to determine where those technologies should be used, and where they work best. I think people are sometimes too focused on the technology, versus taking a technology and trying to figure out what technology is the most appropriate for that particular individual. And I like to make those sort of comparison to, you know, our cars. You know, a Formula One car might out perform any car that we have here, but in terms of as using it on a daily life. It just would be highly impractical and probably would not improve our quality of life.

Jason Lo Hog Tian [21:57] As Dr. Andrysek described, there have been some great advances in the science and technology behind prosthetics to help improve wearability and functionality. However, people with prosthesis still face various challenges. Aristotle told us about some of the assumptions and biases he encounters at the individual, environmental and systemic level.

Aristotle Domingo [22:18] Because I wear shorts, even in the wintertime, the one I get is, Oh, are you diabetic, with a headshaking? Right? They'll give you that look and that face that says, that they've assumed that you've already lost your limbs because of diabetes, the defensive person in me goes, Ah, do you think I'm fat? Or Oh my god, I'm so fat, which I don't think I am. But you do get those. And the funny person inside of me says, No a shark got me and then walk away. Because there are a lot of those assumptions. When people see you on the street, they may not say it, but they will say: 1) because of my age, and what I look like, assumptions are, diabetic, 2) is that I have been in a motorcycle accident, which is very common for limb loss. Interestingly enough, he would even with the likes of Terry Fox being out in mass media, and everybody knows Terry Fox, no one assumes it's cancer. But cancer is one of the most leading causes of amputation, right? There are those barriers that people kind of just assume right away. But then there are physical and systematic barriers that we also go through, when somebody can look at me, and although I am standing on both prosthetic legs, I get the, he's not good enough to do something, because he's from the disabled community, right, or in my wheelchair, systematic and physical barriers, especially if you're in a wheelchair. Our city is not meant to be used by a person in a wheelchair, or walker, or with any mobility aids. Our streets, our sidewalks are often cracked and not leveled. And they're never fixed. We have potholes everywhere. And just the crowds of people using the sidewalks, sometimes don't even look at people coming towards them. When you're in a wheelchair and wheeling down downtown Toronto, you don't have that control to dodge someone who can't see you because they're looking at their phone. Going up a sidewalk, for example, although we say there are ramps, they're not leveled enough that a person can safely put their chair up on the ramp. So there's a lot of those barriers that do happen for us. Compliance is, I would say, not taken seriously. We try hard to be compliant in the city. But it's not, I always say, and there's a loophole around that, is that: we make it compliant; we don't have to make it convenient. So an old building, for example, that says we're compliant, we put a ramp. Well, where's the ramp? Well, it's around the back, going through this dark alley with potholes in it. So then you say, Well, but that's not accessible at all. And they say, Well, it is because we provide a ramp to this building. So there are those challenges, and those are what I call systematic challenges, where people don't think and accessibility is always an afterthought for people, when it comes to design of a building or design of a structure or design of anything, really. But from more, of a systematic [view] in being able to do things, we put a lot culturally to say, that person is disabled, or that person has a disability, they may not be able to do the things that we want them to do, whatever that is, and that's ableism, we already put a stop on those things, even before we speak to the person, you know, we want to find out what they can do. And I've come across those and, and I challenge people sometimes, you're gonna say to me, just because you've seen me with in shorts, but with no legs that I can't do something. I've traveled around the world with an AFO [ankle foot orthosis]. As my job was traveling around the world, I had been on many planes, and traveled to the most remote places in Canada, remote places in the world, and I'm able to do my job. So don't tell me just because of my physical disability, that I can't do, what you're expecting me to do, there are limits to what we can do. Absolutely. Right. I can't lift specific weight, because my prosthetic may not be built that way, for example, to be lifting my body weight and the weight of what I'm carrying. Or I may have issues where my back may be infused along with my amputation where I can't lift those things. But that's for me to tell you and say I can't lift that 50 kilogram weight because my prosthetic cannot lift, 50 kilogram weight. But for you to assume that I can't lift that by looking at me, that's where the barriers [are] and that's where we kind of need to rethink our ways of thinking. When we see somebody with a physical disability, because they are absolutely able, we just had to make sure that things are accessible to us. So we can do the things we want to do. So aside from having this systematic in the perception [challenges], unfortunately, Canada in general is behind in the way, we are providing opportunities for the amputee community to succeed. And what I mean by that is not that we're not providing equipment, we are. Depending on the city, or the province that you're in, for example, here in Ontario. The ADP program, or the assistive device program has not been updated for amputees since 1975. So think about that for a sec. A cost of a candy in 1975 does not equal the cost of the candy today. So that means a prosthetic back in 1975. Both costs and technology does not equal to what the cost of creating one or having one made, in the technology that it is today. So our ADP program here in Ontario says we will cover 75% of the cost. Unfortunately, that is not 75% of an actual cost. Let's say my all time costs for one leg is $10,000. ADP will not cover 75% of that and say we will pay $7500. back on the cost that they figured out in 1975. They should only cover $1500 of that, because the cost of a foot that I should get as a person who lives in Ontario should only be $3,000. So a $3,000 setup would get you a wooden foot or what I would call a World War II foot. It's literally a woodblock. It's literally a woodblock, with a shape, that's shaped like a foot, it has toes in it that's carved out. And then it has a rubber encasing so that you don't slip. And it obviously has a cushion. And so that foot has no ankle dynamic. It's just a wood foot on a pole, or what we call a pylon, and then attached to your socket, which then attaches to you.

Jason Lo Hog Tian [29:15] As we heard from Aristotle, in addition to the social and physical challenges that an amputee patient faces on a day to day basis, patients in Canada also face the large scale challenge of funding. We asked Dr. Mayo to provide more insight into these funding challenges and gaps, the long term impact of inequitable access, and how our healthcare system can better support patients facing amputation.

Dr. Amanda Mayo [29:40] The other challenge in Canada is funding. The funding for prosthetics is very variable across Canada. In Ontario, the provincial plan only covers a portion of prosthetic devices. So patients are often faced, you know whether they get a prosthetic or not, but there's a lot of extra costs for equipments and sort of changes to housing, making things more accessible. So even our non prosthetic patients are faced with a lot of financial hardships post amputation, depending on if they have any extra insurance or any extra funding. But the OHIP system does not pay for 100% of a wheelchair. And it also does not pay for 100% of a prosthetic device in Ontario. Some provinces are different in Canada, but in Ontario, it's about 70 to 75%. So microprocessor new units are for patients that have an amputation above the knee, there's actually no funding in the public system in Ontario for microprocessor knee unit. And they have a lot of benefits. And there's been a recent sort of guideline from the states that actually says they're probably frontline for a lot of above knee amputee patients. So I'd like to see maybe the province just look at, and Canada as a whole, look at the advances in prosthetics and change the funding that's available to patients because I think it really is a two tiered system in Canada, where patients that have access to insurance funding maybe from work can get some advanced prosthetics, but patients that maybe only have access to OHIP just have no chance. Because unfortunately, they're very expensive. Some of our knee units are, you know, the price of a luxury vehicle, $80,000 and above, but they allow patients to be more active and and maybe get back to work, maybe get back to activities that they enjoy. So I think when you look at the whole cost on the health care system, it's probably better to have someone more active and being able to work, then perhaps being more sedentary, because they just can't get the prostheses that would allow them to function best. So we're doing a lot of work and sort of looking at the long term outcomes of amputees to see what are the factors that affect people being more isolated or depressed or not able to return to their activities or work and hoping to advocate to get more services and also funding for patients, just so they can live their best life. And I think if they have more ability to participate in physical activities, then it gives them a better chance to sort of recover and and do well long term. So I think, you know, funding and access is where my heart is.

Jason Lo Hog Tian [32:07] As Aristotle and Dr. Mayo just explained, one of the major funding and accessibility challenges stems from the high cost of prosthetics. This is not an issue unique to Canada, but one experienced across the globe, especially in lower and middle income countries. Dr. Andrysek concretely described this global health problem.

Dr. Jan Andrysek [32:26] But the same requirements I saw as being necessary for a global health problem, which is that 80% of people around the world who have lower limb loss don't actually have access to a prosthesis. And as you mentioned part of the reason is the high costs. A prosthetic device can cost anywhere from $5,000, up to $100,000, depending what exactly what the technology is.

Jason Lo Hog Tian [32:51] In response to the global health problem of inaccessible prosthetics, Dr. Andrysek sought to engineer a low cost solution. He developed the All Terrain Knee: a high functioning, waterproof and low cost prosthetic knee joint that can be used by both low mobility users and highly active amputees.

Dr. Jan Andrysek [33:09] When I when I started sort of heading this direction of trying to design a knee joint for kids, I knew about all the, you know the the great technology out there. But I really wanted to try to design something that would be simple, but still very effective. And that's sort of the origins of this idea, and this sort of mission I sought out to embark on is to design something that used a very simple technology. And after many attempts and many failures, I eventually managed to come up with a novel mechanism. As the individual is walking, every time they place their weight on the leg, they need to feel assured, and be confident that that leg is going to be underneath them. And so we developed mechanism that that was able to do that. And it was a very simple mechanism. And right from the get go this mechanism that was intended for kids, which as I mentioned earlier, we need something simple and robust, something that's not going to break. And so after, you know many years of development, we were able to develop this technology into a product which I was able to we were able to through a startup company start to bring it to to the people who need it and right now the technology is available in about 40 countries and about 20 of those are low and middle income countries. So while we have developed, I believe is a good technology and a good technology that that's applicable to low middle income countries. There are other challenges, as I sort of learned going down this sort of mission. You know, and and really the challenges relate to the delivery and the and the healthcare systems that are in place that would even allow access to to some of the prosthetic devices. So the issues such as lack of trained individuals to take the technology and properly apply it to the patient. Even even at the much reduced cost that we're able to provide this technology, even that, in many, many places is still unattainable just because of the poverty levels that exist.

Jason Lo Hog Tian [35:11] Dr. Andrysek and Aristotle ended with a call to action that invites people from all backgrounds to come up with solutions to the global health problem of delivering functional prosthetics to those who need it.

Dr. Jan Andrysek [35:23] Yeah, I mean, if you're listening, and you don't have to be an engineer. You can, if you have a passion for this field, certainly, as I mentioned, there's some great technology out there. And some of the challenges are in getting the technology to the people who need it, or even just developing the clinical evidence to figure out what technology works best for what individuals. So part of my job these days is not so much sitting there and designing prosthesis, but really trying to mentor and support students and trainees to really open their minds and motivate them and hopefully, to some degree, inspire them to to try to come up with with solutions, both from the technical side, but also developing the clinical evidence, as I mentioned. And even from the business side, figuring out how do you make it viable to provide, what are still fairly expensive, even though you're talking about hundreds of dollars, as opposed to hundreds of thousands, even hundreds of dollars can be too much for somebody living in a poor country to afford, and so how do you make a business model that would allow the provision of these devices to poorer countries? How do you make that possible? So maybe a call to action for some smart minds on all these different fronts to help us really pave the way to make prosthetics attainable and accessible around the world.

Jason Lo Hog Tian [36:45] Working closer to home, Aristotle set out to support the amputee community here in the GTA by founding the Amputee Coalition of Toronto.

Aristotle Domingo [36:55] So the founding of the Amputee Coalition of Toronto was a gap I saw in the community. When I left the hospital, I felt only normal when I'm in rehab, when I'm doing my outpatient. I wasn't seeing amputees out in the community. And I felt that I'm missing a community and why do I feel only normal when I'm in rehab, and I felt that that wasn't a good feeling to have. And so having experienced that, I said, I don't want other people to experience this way that they are a circus when they're out in the community, and they only belong when they are in rehab. That's not a lifestyle. Right. So I didn't want them to feel that they are only "normal" air quotes when they're in rehab, or when they are in hospital, that they can participate in the community, just as they are with or without a prosthetic or being an amputee and I had a struggle to find that group, in Canada. I had searched and searched online and where I can turn to for support with other amputees if I had questions going through my journey, at the beginning of this, of course, I didn't know what to expect, right? I've never been an amputee before. And so I had a lot of questions. And we had this culture where a doctor is up higher on the totem pole, and patients are lower on the totem pole, where, should I be asking that question? Is that a stupid question? So where can I go for these resources. And I found a community, amazingly enough, in the United States, I flew to the United States to attend an amputee conference. And yes, there is a conference for amputees. And I enjoyed that feeling of community where we were in this one conference hotel. And we're all staying in the same hotel where everywhere you walk, every elevator you get on, there is an amputee, every bar you go to is there's an amputee sitting down who's willing to talk to you, without any hesitation at all, because it feels like family, even though you've never met them in your life. After the first Hi, my name is this, the conversation just kind of naturally happens and and I loved and enjoyed that feeling of I smile and a wave at someone and it's great. And so when I had come back from that and was inspired by that I said, that's what I was looking for, and if that's not happening or existing in my community, I'll create it. And that's how I started with the Amputee Coalition of Toronto. That started as let's just meet people in a social setting, because what I didn't want is the feeling of a basement where we get together, a church basement where we get together once a month, in a circle, expressing how we're feeling. I didn't want it to feel, as much as AA [alcoholics anonymous] is probably a really good group and they helped a lot of people. What I wanted was the social aspect of it. I wanted people to be out be seen and be comfortable being out and being seen. So my thought was, if we go out as a group, you forget that people are staying at one person or just staring at you. They're just staring at the whole group. And eventually they get tired, because those people are acting just as if they are a group of friends, having coffee, and chatting, and laughing. And that's what I want people to realize is that moving forward in your journey, is just adapting the things that you do every day, nothing stops you from doing what you want to do. So when I say limits are just in your mind, or people hear that expression limits are on your mind. It's true. Because if you realize, Hmm, I can do that, you will do it. And that's what I hope originally, that's what I hope the Amputee Coalition of Toronto will bring to people, is that: realizing the community exists, first of all, right, and by showing folks these things that we can do, you go back to whatever you're passionate about, and move on with your life, and live a better quality of life. It has also become so big now that we are also spreading awareness, to make sure sort of the same, you know, things that I'm advocating for is access to prosthetics, access to funding, because we don't get told those in hospitals or in our care, right, we do a lot of digging for ourselves. So if I can do or the Amputee Coalition of Toronto, can do half of that work for you where we say, Hey, you know what, you can access this funding for your sports, hey, you can access this funding for your prosthetics, there's this that you can do to, to get that kind of prosthesis. Because of everyone's collective experience, in going through what they've gone through, we can share that as a community and help each other out. And that's what the group is there for. Your life doesn't stop just because of an amputation. I look at it more as how do I move forward. And I think moving forward and growing from my circumstances, is always, has helped me cope with my amputation. You know, and if anyone is comfortable, fight along with me, fight along with us to fix the funding, and fix the access to equipment, and devices that allows us to live the best quality of our lives because a lot of times, it is the sole barrier that stops us from having a better quality of life and contributing to the community.

Jason Lo Hog Tian [42:24] We would like to take this time to give a massive thank you to all our guests, Aristotle Domingo, Dr. Amanda Mayo and Dr. Jan Andrysek, for their insight and expertise making this episode possible. Be sure to check out the resources and links in the show notes, if you're interested in learning more about the topics discussed in this episode. Catch us in two weeks on October 21, when we will be discussing organ transplant and donation. This episode would not be possible without Alex, our Audio Engineer, as well as Jenna, Stephanie, Jesse, and Stephania, who developped the content for this episode, hosted, and conducted interviews. Jesse was our Executive Producer. And until next time, keep it raw.

Ekaterina An [43:06] Raw Talk Podcast is a student presentation of the Institute of Medical Science in the Faculty of Medicine at the University of Toronto. The opinions expressed on the show are not necessarily those of the IMS, the Faculty of Medicine or the University. To learn more about the show, visit our website rawtalkpodcast.com and stay up to date by following us on Twitter, Instagram, YouTube and Facebook @rawtalkpodcast. Support the show by using the affiliate link on our website when you shop on Amazon. Also, don't forget to subscribe on iTunes, Spotify, or wherever else you listen to podcasts and rate us five stars. Until next time, keep it raw.