At The Forefront Live: Building Community, Finding Answers

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Misericordia is a very special place, located in Chicago, where people with a variety of disabilities can live the best lives possible. It's a neighborhood within a neighborhood, where people can work, learn, and live in a caring social environment. Now today, on "At the Forefront Live," we'll introduce you to Sister Rosemary Connolly. She has led the efforts at Misericordia for several years now. And she brings a friend of Misericordia, coach Mike Ditka. And we'll have UChicago Medicine chair of neurology Dr. Shyam Prabhakaran on to discuss some of the advances in neurology and neurological care. That's coming up now on "At the Forefront Live."

[THEME MUSIC]

And welcome to "At The Forefront Live." Remember, we'll take your questions over the next half hour. So start typing, we'll get to as many as possible. As always, we want to remind our viewers that this program is not designed to take the place of a visit with your physician. Welcome to the program. I'm happy to have all of you on today.

Thank you, Tim.

Well, sister, I want to start with you, because we're going to talk-- we're going to devote the half-hour to Misericordia and our partnership with Misericordia, to raise money and awareness for neurological disorders. And I've now had the opportunity, the pleasure of coming out and visiting a couple of times. And it's a wonderful, wonderful facility, first of all.

And in the introduction I said, a neighborhood within a neighborhood, and you really are. And you did that on purpose.

Thank you, Tim. We did. I think we're a community of believers. And we've been up on the north side since 1976, where we began with 39 children and 35 staff. And today, we are privileged and blessed to be able to share life with 600 children and adults in residence, 200 in a day program, and 1,200 staff. So God has blessed us 100-fold, through the good people in Chicago and around, who really believe that our children not only have a right to life, but one worth living.

You know, sister, one of the things that really struck me as I visited and talked to not only the residents, but the staff, but everybody up there was happy. Everybody-- the staff members loved the residents, the residents loved the staff members. It's like a big family almost, a really big family.

Well, it is. It's a community of believers, not only with the children and adults who are residents, but our staff, our volunteers, our families, everyone involved with Misericordia are so grateful that there is a place like Misericordia that really gives peace supplying to their families, to the residents' families, it gives our residents the best life possible, it gives volunteers an opportunity to share their talents with us, as Mike has done over the years so nicely. So we are so blessed and Misericordia. And I do think we witness to God's love in action in a very special way at Misericordia.

You mentioned Coach Ditka. We have to bring him into the conversation now. And Coach, you've been involved with Misericordia-- I think you told me in '83, '84, roughly in that frame is when you met Sister--

Yeah, somewhere in there, yeah.

So how did that all start?

Well, somebody invited me down to Misericordia to see. And I didn't know. And I said I'd go, and I went. And what I saw was unbelievable, because I had never seen anything like that before. It's a community based on love. And that's what it is. And these children, they don't know they're handicapped or-- they don't know. I mean, this is-- they have an ability to love, and give, and share, and that's what they do.

And Sister Rosemary and the group at Misericordia have allowed them to do this. And they grow as human beings, where in another segment of society, they couldn't do that.

You know, it was interesting-- so when we were out there two or three weeks ago, and you were there, and you came into the art area which was a pretty neat experience. And you had a lot of fans there. In fact, you had one young fellow there that had a Ditka jersey on, number 89 if I remember correctly, from your old days. And he was a big, big fan, obviously. But it was neat to see you interact. And everybody had a good time visiting with you.

Well, it is. You know, we live our own lives, and we get wrapped up in the things that we do daily, and we don't take the time to think about this segment-- this part of our society exists. But we have a tendency to push it away. And then when you see it firsthand and you see the love that's being brought to these children and adults by the group-- the staff at Misericordia, it's unbelievable. I mean, I don't know because I'm not in that condition. But I would say that these kids are probably the best taken care of-- children and adults are the best taken care of children adults you'll find anywhere at any facility.

Thank you, Mike.

You know, sister, it's interesting, because there are-- we mentioned art just a minute ago. Art is a big part of what happens at Misericordia, which I was just blown away, first of all, by the talent of these folks that are living there. Because they're artists. I mean, it's really, really good stuff. So art, there's a bakery, there's a restaurant. I think we showed a little bit of video of the restaurant a few minutes ago. There are all kinds of activities that happen there that really are, I think, just so important to living a good, fulfilling life.

You know, Tim, they deserve this. And people are so generous to help us make it happen. But you know, we stand in contradiction to the national trend that says there's only one way to serve people with disabilities, and anything big is bad. We believe-- and the national trend is, everyone, no matter how disabled they are, belong in isolated houses is in the neighborhood. Now we believe that-- we have 13 of those houses in the neighborhood. We're probably one of the only agencies that has the full continuum of care, from skilled nursing to houses out in the neighborhood, and everything in between.

Now we have 13 of those houses, and they're high-functioning people, and yet we had to bring four people back to our campus because their physical needs changed so radically. So we have the full continuum of care, which gives families such peace of mind. Because now we can say to them, we can walk this journey with families until God calls the person home. That is such a gift, because families start worrying who is going to be there when they can't be there. So how blessed we are to have this full continuum of care because of the generosity of so many good and generous people who want to make a difference and found their way to Misericordia.

Now, Dr. Prabhakaran is here with us as well. And he's the chair of our neurology department. Talk to us a little bit about, first of all, the partnership with Misericordia, why it's so important to raise awareness for neurological disorders and money at the same time.

Sure. So Misericordia is doing really an amazing job in our society. But when you think about disability, it's obviously got an impact on everybody's lives. I'm sure all of us have been touched by somebody with disability. And so when you think about neurologic disease as a component of causing disability, it's obviously going to be a big part of that. There's conditions such as congenital conditions and developmental conditions that lead to disability, but there's also adult conditions that we acquire-- stroke, or trauma, and other things that lead to disability. And it could be physical, mental, a combination. And so the work is really important.

When you really think about how we have to serve that group of individuals, how do we give them the dignity, how do we give them the supports that they need to have full and fulfilling lives. That's such a key part of what we are as a society. And neurology is really all about that-- restoring the abilities of individuals to the levels they can get to so they can have fulfilling lives.

One of the things that struck me as interesting with some of the residents there at Misericordia, and staff was talking to me a little bit about this, that they're seeing more incidence of Alzheimer's and dementia as people age. And that's a real challenge, obviously. And can you talk a little bit about that, doctor, and--

Yeah, as a society, we know that Alzheimer's is going to be a big problem, and it already is. In individuals who have Down syndrome, or trisomy 21, that's a condition that many of the individuals at Misericordia have, those individuals have an increased chance of Alzheimer's at an earlier age. And so as the care is being provided that actually now allows them to live longer lives, which is tremendous, but they now experience the late-life effects of that. And that's something that, of course, you're seeing more of, which is they're having more advanced cognitive impairment and dementia.

And what kind of research is happening now in that field? Yeah, this is a great big question of our time-- how do we solve and cure dementia? This is going to be probably the challenge of our lifetime. And many people here on campus are doing things that are really exploring both the very basics of what causes those changes to occur in the brain-- some of it is looking at the really microscopic cellular changes-- and others are looking at it from the standpoint of what can we do. Are there treatments that we can apply that can block the cascade of changes that's occurring, so that we can at least slow it down, and one day reverse or cure it? Because that's really what we need. We're talking about a society, as we age and we live longer, we're going to see probably more cognitive impairment and dementia.

It's interesting to me how care for folks with neurological disorders have changed over the years in people with disabilities. And it's changed, obviously, for the better in many, many ways. And one of the things that really struck me about Misericordia that I thought was pretty interesting-- everybody's busy there. There is very little downtime. You know, people are having activities, they have jobs, they're very busy. And I think we have a couple of clips that I wanted to play.

John, if you'll play the one-- let's start with art first, and let's play that one. And then we'll do the bakery clip here in a minute.

We'll do, often, coil building or hand building. Wheel throwing, a lot of times, I'll get in a group, one-on-one, or in a small group, and work on the pottery wheel. And I just think it's important, because it's a really hands-on place to work, and keeps the physical mobility for a lot of our residents who might have some difficulty with that. It's just their opportunity to express themselves in a very hands-on environment. And it's great to be able to see their ideas come to a physical place, and then also to be in people's homes. So it's really exciting for them to make something, and then see that it's living in someone's home and being used by people.

And some of the work is just fantastic. It is really impressive. And you have a big fundraiser each year with the art as well.

We do indeed.

And I am blown away. And there's a-- and I think this was done on purpose-- there's a bakery, and restaurant, and a gift shop right by there, and you sat me near the gift shop when I visited, which that worked, by the way, I will tell you. I went and spent quite a bit of money. There's some great stuff there, and anything from art to the baked goods, it was really, really nice.

Let's go ahead and play the bakery one, too, because I'd like to see that one.

So residents and bakers are scooping, weighing things out, we have volunteers that are here every shift throughout the week that assist with all kinds of different things. A lot of what we're doing here is kind of creating new skills or fostering people's skills that already exist. And we are fulfilling orders online, we're sending things down to the farmer's market, we have the greenhouse and restaurant, we have a bakery counter we sell at. So we got our hands in a lot of different places.

The people that are here have a general interest in being in the bakery. This is a place that makes them happy. So I think a lot of people are excited to be here because it's something that kind of plays to their interests.

And I will definitely give a plug for the baked goods as well. They're fantastic.

They are good.

And sister, again, this was all done by design, when you really started this years ago and you started things. Tell us a little bit-- you told me this story earlier, but I want you to talk to our listeners, because you started with just a very few-- and it was children at that point-- you bought some equipment and some things to keep people busy. Kind of talk to us--

Well, in 1969 I was appointed by the Sisters of Mercy to become the administrator of Misericordia South. At that time, they had 132 children, with 69 of them being baby Down syndrome. Doctors were telling the parents at that time, since there were no programs available for them at all, to place them, get on with your life, and even forget about them because they're not going to amount to anything anyway. That was kind of the attitude of our society.

I came as a social worker and as a teacher, and the children at Misericordia South got beautiful, beautiful custodial care. But that wasn't enough. So I went to universities, I went to hospitals, and I asked for help. And they told me that they had nothing to offer, and that we should become the experts. So I went to Sears and bought bicycle, and tires, and anything I could think of that would make it more active for the children. And they ate the programs up, especially the children with Down syndrome.

So I knew that they didn't belong at Misericordia South, which was a skilled nursing home. So we were talking about transferring them. And I went out to different places, and we were doing more than anyone else. So I knew that we had to create our programs ourself. And the Archdiocese of Chicago made a very generous gift by saying that we could have 5 and 1/2 acres of a campus that had been Angel Guardian Orphanage, but was closed by the state, and therefore they lacked funding and couldn't go on.

So we started Misericordia North, as I said, with 39 children and 35 staff. It was all the money that we had to renovate two buildings, two dormitories, a learning center, and a recreation room and a small chapel. That was Misericordia North. By the end of that year, we had 60 children and we were able, in 1983, to build nine homes through the generosity of a Mr. Edwin Kennedy, who gave us money to do this. So that was the beginning of our village. So ever since then, we have been growing, and expanding, and meeting more needs. And I think that's why we're so blessed, because every time we build and expand, we're meeting an unmet need.

Now we have the full continuum of care, so God has blessed us 100-fold with the generosity of so many good and beautiful people who truly believe that our children deserve the best. And that's what Misericordia is all about.

- You know, Sister, it's interesting, because you really did become the expert in this area. This was kind of an area that not a lot was known as far as how to help people in these situations. And you just learned as you went, and kind of made it up with great staff. You had some help, but it's really pretty impressive.

Well, another gift I think God gave us, Tim, was the right people have always been in the right place at the right time, inside the walls of Misericordia and outside the walls of Misericordia. In 1983, my dear friend here, Mike, won the Super Bowl. It was '85, wasn't it?

You're better than me.

It was '85 you won the Super Bowl. You know, we are a sports-centered society. And he has been such a good friend throughout these years. We never asked Mike for anything that he wouldn't do for us. And there are many other people that have been there and have been the right people at the right time. So God is watching us very closely.

So I like the fact that you say the coach was there at the right-- right person, right place, right time. Let me ask you a little bit about that year, though, because you became a football fan.

[CHUCKLING]

I did. I knew which way I wanted them to run with the ball. And Mike thought I knew a lot.

She knew what color our uniforms were.

So Coach, tell your side of that story.

Listen, I'm a guy that, anybody says, you want to go play golf, I'll go play golf. They had The Bums outing. The Bums were such great guys. These guys were-- they were her right arm. I mean, they did everything. They worked. And what they did, nobody knows about it. But they made these the lives of these people, these children and adults, so much better by the efforts they put in. And the golf tournament was terrific. And I never played well in the darn thing because I stink.

Yeah, but you were there.

I was there.

And that's what's important. You were hooked at that point.

Well, it's not only that. I kind of got a soft spot for stuff like this anyways. Because people who have less than we have, if we're in a position to help them, let's help them. And we did.

And you must've been pretty impressed, Coach, though, when you went out there and saw what they were doing there at Misericordia.

Beyond impressed now. You can't comprehend and you go and watch it. You think, well, I know what they're-- no. It's unbelievable what they're doing.

And I will agree with you there. Because you don't really understand what it's all about unless you actually go to campus and see it. And once you see it, and you see the smiles on everybody's faces, and the activity. And just-- it's nonstop. It's like a little city right there.

They could call it Happy Village, really. I mean, everybody's smiling. Hey, you know, hey, Coach.

So Sister, so again, you weren't a big-- you told me this story. You weren't a big football fan, not a big sports fan.

That's an understatement.

[CHUCKLING]

We're working on it.

You've been working on it for a few years.

It's kind of late now, Mike.

And you had told me, kind of half-jokingly, that you'd never really prayed for a sports team until the '85 Bears. And it must have worked.

Well, I keep telling Mike that's the reason they won.

It is.

So it does work, I think.

And I agree with that 100%.

Till she came in, it was-- and it worked.

It worked.

We only won one, but that's OK. We won it that year.

That's right, yeah.

That was a big year-- big year.

So Dr. Prabhakaran, let's talk a little bit about some of the challenges that you see. And if we can, can we talk about epilepsy a little bit?

Sure.

So first of all, just explain to us what that is, what's going on in a person's brain when that happens, and some of the advancements that we're seeing.

Yeah, so epilepsy is another condition you see fairly commonly in those with disabilities. It's kind of a short circuit of the brain. It's been an area where there might be some scarring or some changes from early injury. And that area starts to fire abnormally. And when it abnormally fires, they could have convulsions or shakes. And those shakes could be what you see visually, when you're observing. Or they could just stare off and be kind of blank, and that might be what you see.

It's a real serious condition. It can lead to bodily harm. They could be in areas where they could hurt themselves because they're not aware of it. And so it's got real implications for a person's life and their loved ones who are caring for them.

Epilepsy has been around for a long, long time. And cures have been the goal for the last decade or two. But treatments have gotten a lot better. Medications-- we used to be able to provide a few medications that were often pretty harsh on the body. They would lead to a lot of toxicity, sleepiness, a lot of other changes would occur. But now we have, really, a whole host of medications that have been proven, and tested, and work even better than the old medicines, and are safer.

So now the number of people who have epilepsy who can get treatments for epilepsy is higher and higher. And the number of people who fail those treatments is lower and lower. But we still do have challenges of treating patients who, because of how difficult their epilepsy case is, medications aren't enough. And so surgeries are now being developed, some of which we do here.

There are very unique, minimally-invasive surgeries that are done here, called laser treatments, where they direct a laser to the area that's causing the seizure, and zap it, and hopefully get rid of the area that's causing the problem. And there are other treatments that are looking at how computer or chips can be placed over the brain where it's firing abnormally, and almost like a defibrillator, zap that area as a seizure starts. So you can imagine how these kinds of treatments will be really the way epilepsy is treated maybe in the next 10 years or 20 years.

That's amazing.

Encouraging.

Yeah, very encouraging.

Particularly those who have really difficult-to-treat epilepsy.

And again, that's why it's so important for not only awareness, but fundraising for great institutions like Misericordia to happen, because it's very important to make some efforts in these areas-- make more efforts in these areas.

Let's talk a little bit more about dementia and Alzheimer's, if we can, just for a few minutes, because that is an area we just we just touched upon a little bit. And I'd like, if you can, kind of describe to us, first of all, what does early-onset Alzheimer's look like, what should people look for, and what kind of things can people do to help with that situation?

Yeah, to answer the first part, so early-onset Alzheimer's or dementia really looks like what people are aware of in society-- early memory changes, forgetfulness, those are the common things that people will tell us when a loved one is experiencing signs of Alzheimer's. So they might forget things that you just told them, and they might ask it again or repeat things that seem like they should have remembered it. They might get lost in familiar areas or settings. So they might start to seem like they don't know how to get somewhere they used to be able to get to. They might forget people's faces that they should recognize. And so that might be a sign that, hey, how come this person doesn't recognize me anymore?

These might be some early signs of Alzheimer's. They might forget the right words. They might say things that are the wrong words, misspeak, and these might be the early signs that Alzheimer's is beginning.

And sometimes that might precede the full disease by five to 10 years. So you might actually catch it early on.

So if a loved one notices that their spouse, or relative, whatever, friend, what are some things they can do?

Yeah, the last 20 years or so, there's been, obviously, a lot of interest in understanding the disease. And some of that has really been tremendously helpful to know that this pathway is what-- resulting in the changes in the brain. The attempts to halt that have been somewhat frustrating. We've obviously not had a lot of treatments that have worked, although some have slowed it down. There are treatments like the cholinesterase inhibitors that increase a certain neurotransmitter that does help a little bit. And there are others that have been tried that also help a little bit.

But getting it to a treatment that will reverse or halt it completely is still evading us. And so we're hoping that the, next, types of treatments that are being tested that are blocking the initial cascade will actually be able to slow the disease or halt the disease. But some of the things you mentioned actually work, too-- physical activity, mental activity, these kinds of challenges and things that we give people who have a disability actually help the brain exercise.

That's great.

So what you were doing all those years ago was actually a form of therapy that actually probably improved their function, because they were actually doing some brain-type exercises that they needed to do.

Well, Sister, we knew you were a trail blazer.

[CHUCKLING]

Whatever you call me, I don't know.

Well, this has been fantastic-- really, really interesting. And again, I urge anyone watching, support Misericordia. It's a wonderful organization. And you can go out there to the restaurant and have lunch. It's a good place to get lunch, too.

Actually, the food is very good.

Thank you, Mike. But we do appreciate the University of Chicago Medical Center for wanting to join with us, or to bring us into this very, very wonderful publicity, and notices, and invitations. So thank you, Tim.

Perfect. And Coach, thank you for being on.

Go out and have lunch.

[CHUCKLING]

There we go. That's all the time-- and Dr. Prabhakaran, thank you again. And we'll--

My pleasure.

--have you on again in future. There's no doubt in my mind. That's all the time we have for the program. Thank you for being on the show, and thank you for your wonderful questions and answers. If you want more information, please check out our website at UChicagoMedicine.org/finding-answers. Thanks for watching. Have a great week.

University of Chicago Medicine is advancing the forefront of health every day, with breakthroughs in immunotherapy to fight aggressive cancers, leading-edge treatments to prevent a major cause of stroke, and game-changing orthopedics for elite athletes and the rest of us, too. We're bringing research to reality, and making the extraordinary possible so you can experience advance care in everything we do. Welcome to the forefront.

This was a paid program from UChicago Medicine.

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