Transcription:
What I Wasn't Taught in Medical School About Treating Patients With Disabilities

Melanie Cole, MS: Welcome to Better Edge, a Northwestern Medicine Podcast for physicians. I'm Melanie Coleen. Joining me today is Dr. David Mochel. He's the Medical Director of Regional Medical Group Orthopedics at Northwestern Medicine. And he's here to tell us what he was not taught in medical school about treating patients with disabilities.

Dr. Mochel, it's a pleasure to have you with us today. I'd like you to start by telling us just a little bit about yourself. You're an active member of the Northwestern Medicine Champion Network Disability Chapter. Can you tell us what this network is and why you became involved?

Dr. David Mochel: Thank you for the opportunity. And yes, I was an orthopedic surgeon. Let's say I started in 1993, so I've been around for a little bit. And my practice was focusing primarily on hip and knee replacements. So, I was an orthopedic surgeon doing hip and knee replacements. And then, approximately, I don't know, 9, 10 years ago, my wife started noticing that I was kind of walking a little funny, you know, going upstairs or a bunch of stairs. And the other thing, I committed the cardinal sin of scratching the newly refinished hardwood floors that's in the house. Because when I was getting up from the dinner table, I would slide my chair back and I would scratch the floors. And it turns out it took me a couple years to figure out what I had. But, basically, I was ultimately diagnosed several years later with a rare muscle disease called inclusion body myositis. And so, it falls into the rare disease category. And those were just some very early subtle signs that I had this. So, it took a couple years for me to get the correct diagnosis. At first, they thought I had something that was treatable, and so it was a different diagnosis and I was on a bunch of meds and stuff, treatments for a couple years. And then, after a couple years, I wasn't getting better and so they figured I got another opinion. And they at that point figured out that I had something called IBM or inclusion body myositis. Unfortunately, that wasn't treatable. And it's kind of a slowly progressive downhill muscle disease.

So at that point, I was still doing about 300 joints a year. I was really doing fine. I couldn't run up and down the stairs of the Hancock, but I was still doing fine surgically-wise. But the obvious decision at that point is, "Okay, when does the surgeon with, let's say, Parkinson's disease or something decide to give up surgery?" So once we knew it was not treatable, I did make the decision at that point to stop operating. I did see patients non-surgically for a couple years. And then, I was just becoming harder to see them, so I was going to retire. And then, they asked me to stay on as medical director. So, I've been a medical director now, geez, I don't know, 4 years, maybe '18, trying to think when that was. So at this point, I do an administrative job. I work at a desk for the most part.

So, how I discovered, you know, it's one of those things on NMI, on the Northwestern Medicine website, you see the little things flash by. And one of them was a disability chapter of kind of a Champions network. I honestly knew nothing about it. But I also had done some non-profit work in the area of myositis, and so I kind of clicked on the link and learned about the disability chapter. And basically, that's a component of this champion network that deals with people with disabilities. So, I thought, "Well, maybe, as an orthopedic surgeon with a rare muscle disease, I can help other people going through similar things." So, I signed up and I got involved. And I signed up with the intention of giving, like, "Okay, I can really help people, and maybe offer things to other people." And as it turns out, as time goes by, like most of these things, you find out you learn more from others than you do giving. So, it's been very positive.

Melanie Cole, MS: Wow, what a story and thank you for sharing it. So, what you just said really struck me, is how you learn these things and it gives you a deeper understanding. So, how has your story and being involved in this network given you this deeper understanding of others' experiences? You were an orthopod doing hips and knees. And as a physician, but now a patient, what have you learned about treating patients with disabilities that would be helpful for other physicians? How has this really changed your view of people with physical disabilities?

Dr. David Mochel: No, that's a great question. And, you know what, 10 years ago, I was the one kind of seeing patients trying to get who are really struggling and replacing their hip, or replacing their knee, or fixing a broken bone and trying to get them back to their life. And now, I'm the guy in the waiting room, sitting there, using a walker, using a rolling walker; at some point, probably not in the too distant future, using a power wheelchair. When you're sitting on the other side of it, after being on the other side of the wall for so long, it's very humbling, first of all, and you truly appreciate all the goodness and kindness in people. Not just the docs, you know, really, it's the staff and how a lot of people who are in the healthcare profession in general are very giving and caring people, everybody, not just the doctors and the nurses.

So first of all, it's very humbling, to be honest with you, being on the other side. But then, you start learning something. So, mine is a mobility disorder. And so every year, it just gets harder and harder. Like, I can't get off a normal chair, walking's difficult. So, you start seeing things that you never appreciated before, like I said. So, it was very humbling and I think it's good. I'm in a role now where I'm a patient, having been a provider, but I'm still inside the system, like I can help people and advocate for people who are in my situation and others, and they're similar. But at least, I'm still on the inside and so I can try to help change the system and raise awareness.

Melanie Cole, MS: So, what do you want other physicians to know? Because a lot of times and now you realize that people with knee problems, severe hip problems that have trouble getting up out of a chair, now you can see it from their point-of-view when they were coming to you for a replacement. For other physicians, Dr. Mochel, what do you want them to realize? Because not everybody's going to get a rare disease and see it through the vantage point that you have. What do you want them to know about looking at these people as a whole person and saying, "I hear you and I hear that you're in pain," or "I hear your complaint," and how can you help them with that part?

Dr. David Mochel: That's a great question, and there's probably two components of it. I would say the first component is, probably, as the patient, I find I probably tend to minimize how my wife saw it, and my kids saw it probably. But I think, when in front of the doctor, I would tend to say, "Oh, it's fine. I'm doing okay. I'm doing fine. I'm doing well." And I think relatively speaking, I probably was. But I think you underestimate. So number one, I probably underestimated how disabled I was. My wife saw it and at some way-- and I've been married for 33 years-- I married way above my pay grade. But I think hard for her to speak up and to say something in front of the doctor. I think part of it is asking questions and it needs to be very basic questions. I mean, when you see somebody, you know, can you go up and down stairs? You got to learn to anticipate, ask very basic questions. Can you still drive? How is it when you drive? Can you get out of the car okay? You know, basic questions that you would never think, because this person-- and I look fine. If we were doing a Zoom call right now, you would see that I probably look fine. But then, if you saw me try to get up and walk, it'd be a different story.

So with a patient, I think it's really trying to couple things, number one, realize the patient's probably exaggerating how well they're doing. Asking the spouse or the partner can probably be very valuable, knowing that sometimes it's hard maybe for them to be honest. And if you're getting a feeling that the patient may be struggling a little bit, you probably got to ask more questions. So, I think it's really pursuing very basic functional things and asking better questions. I think that would be the main thing.

Melanie Cole, MS: What a great point. I just pictured that, because I'm one of those wives that sits in there with my husband going, "No, he's not telling you about this. And, you know, it's really more like that." So, that's an excellent point that you made. Now, tell us about your work with the Myositis Association and how others can support this work.

Dr. David Mochel: Thank you. So, when I finally got the right diagnosis, I figured, "Okay, how can I help?" And so, the main patient advocacy organization for what I have, which is called myositis, is called the Myositis Association or TMA. So once again, through a physical therapist at Marianjoy, she was great and she was very helpful, and she connected me with a support group.

And once again, I'm thinking, "Well, what can I offer people?" Thinking I don't need help, but I can help people. And once again, it turns out, "Listen, I can offer help to people, but I also can learn." And that's the other thing, is I learned a lot. I think my wife learned a lot. So through the support group, it turned out to be a good experience. And part of this could just be I'm a very stubborn surgeon, who knows everything, but that's probably the truth. But you do learn as time goes by and get humble. But I would say I got involved with TMA and I was then asked to be on the board. And so at this point, I'm currently the board chairman, have been for a year and a half, and I'll be for another year.

So, being in the non-profit space has been helpful. Northwestern has been great in supporting me with my disability, but also helping with the non-profit stuff. So, learning how to manage a non-profit is, you know, being on the board of a non-profit, very different especially a smaller non-profit. So, myositis.org is the website and it can give you information about TMA and myositis.

Melanie Cole, MS: Dr. Mochel, working with people with disabilities really presents unique opportunities for collaboration creativity. As you have seen in your personal experience, how have you seen this materialize at Northwestern? When you think about long-term solutions, how do you want the healthcare industry to think about working with these patients and reform this industry so that these patients are really seen and heard and across the board really, not just the doctors and nurses, but everybody that's involved?

Dr. David Mochel: Well, I think it's a culture issue. And I think, like I said, this is a world I had zero insight into. I'm not going to lie, Melanie. I mean, at this point, I had no insight into this. I would say the more I've learned about NM and their disability chapter, but also the Champion Network, I give them credit, not going to lie to you. I mean, they've done a very nice job. And I guess really what I have found is people are so good. Just staff, other people they want to help. I think the hard part is they don't know often what to do and they don't want to embarrass people. But what I have found is that 99% of people are good, they're great and they want to help.

So part of this is on my end of it, you kind of fight the disease. I know this is just going to slowly go downhill. So, you tend to not ask for help. You tend to just kind of, "I got it." And part of that's a mindset. But just today, I was coming in. I've got a rolling walker downstairs and one of the custodial lady was changing out the lining of the garbage can. And she stood and she kind of got out of the way for me, being very sweet. And then, she kind of looked up and she says, "Would you mind if I help get the door for you?" And in the old days, I would've said, "Nope, I got it," and I'd struggle and it'd be awkward. But I'm like, "Yes, thank you." And that, and she did, it made it easier for me. But that's what I find, is people are usually very good and God bless her for asking, to be honest with you. And she was great. And that's what I have found is that people in general are really good. They want to help you. And I need to learn to ask. But I would say Northwestern does a fantastic job of promoting the culture. And really, like I said, it's something I had no insight in 10 years ago. But I have insight into it now and I give them honestly a ton of credit.

Melanie Cole, MS: That's a great testament to the people that work at Northwestern Medicine. Dr. Mochel, as we wrap up, leave us with one parting piece of information for physicians as they consider their own practices.

Dr. David Mochel: Well, I'll jump into the rare disease space So, rare diseases are rare. Basically, the definition is less than one and 200,000. So, the key is I did hip and knee replacement, so I had to learn about, "Okay. How to it do a hip, how to do a knee, how you do it the right way," all the factors that go into it. Then, you had to look at their medical issues and, "Okay, how does their diabetes impact what I do? Their weight, their blood pressure, their blood thinners, et cetera, et cetera. There's over 7,000 rare diseases out there. So, the problem is, if you just worry about hip and knees and, even for the primary cares, all the things they have to handle, you can't be expected to know about 7,000 rare diseases, most of which you've never seen. But this is one thing I did learn, one in 10 people in the United States have a rare disease. So, let's say when I would see 30 people in a day, that means three of those 10 came in, that I saw that they had a rare disease. And I'd say the odds are I didn't know it. So, I would say as a physician, listen, if you're seeing something that's weird, that's just not making sense, these rare diseases are more common really than you think. So keep pursuing it. Don't just write it off. Don't be afraid to refer. Don't be afraid to send to somebody else to get a look at. So I think the thing that I learned is, yes, rare diseases are rare. But in total, in the aggregate, they're actually more common than we think.

Melanie Cole, MS: What an eyeopening podcast this was and so informative. Dr. Mochel, thank you so much for joining us today and sharing your story and incredible expertise in this area for other physicians. So much to think about. Thank you so much again for joining us. And to refer your patient or for more information, please visit our website at breakthroughsforphysicians.nm.org/rehabilitation to get connected with one of our providers.

And that concludes this episode of Better Edge, a Northwestern Medicine Podcast for physicians. Please always remember to subscribe, rate, and review this podcast and all the other Northwestern Medicine podcasts. I'm Melanie Cole.