Donna York and Marilyn Mongiello

[00:03] DONNA YORK: Hi, my name is Donna I, 62, will be 63 in seven days. I'm in Hillsborough, New Jersey. My partner's name is Marilyn and our relationship is close friends and also share a journey with ALS that I did with my father and she's currently doing with her husband.

[00:28] MARILYN MONGIELLO: Hello, my name is Marilyn Montello and I am 55 years old and I live in Pennsylvania. And I met Donna along my journey. My husband has ALS and it was a dark journey. And when I met Donna she was the light in our journey for help. So Donner's organization HARC was how we met. It's a nonprofit.

[01:03] DONNA YORK: You want to go first question?

[01:06] MARILYN MONGIELLO: Sure. So Donna can you tell me a little bit about how the journey of your father n ALS has inspired you to create HORK after him?

[01:22] DONNA YORK: Sure. So it's funny because everyone kind of tends to think that my family really struggled financially because of what I do. But my dad was a veteran and is a service related disability. So we had home health aides paid for. We would have gotten everything paid for, but he only lived 18 months. So we really didn't need the van and the home modifications and everything that goes along with ALS because he just didn't live long enough to need them. But the VA does supply all of that to ALS patients. That's only if you're a veteran, though of course in veterans are 50% more likely to be diagnosed with ALS. But it's the non veterans that really have a major challenge financially with this disease. So not long after my dad passed, I had a friend that I worked with at the Y that came to me and said, I think my husband has als, but he won't go to the doctors because he doesn't have insurance. And I said, well, what are, you know, what are the symptoms? I mean, I'm not a doctor, but you know what's going on. And she told me and it did certainly sound like als. Marilyn Amyotrophic Lateral Sclerosis. Correct. With ALS stands for?

[02:41] MARILYN MONGIELLO: That's correct.

[02:42] DONNA YORK: It's very. I never know what the. If I'm pronouncing, I think I would know it by heart now. But what the pronouncing the first one correctly. But anyway, I said, you know, I really, I really, I'm not a doctor, but it does sound like some of the symptoms. And at the time I think he had had to leave his job because he was showing weakness in his hands. And so I think that's the reason they didn't have insurance. She worked with me at the Y, so Long story short, he did end up being diagnosed with als, and because of that, she had to quit her job at the Y and stay home to take care of him, because nobody pays for home health aids. Nobody pays for that. No insurance, nothing. So you can't leave an ALS patient alone. So she had to quit her job and go home. So they had to live on Social Security, which is really not. When you're in New Jersey, you can't live on Social Security. Most places you can live on it, but in New Jersey, it's really difficult. He ended up falling once, and she wasn't there. So that's why she ended up leaving her job so she could be home with him. He fell again and hit his head and ended up in the hospital and never came out. So it really wasn't the ALS that killed him. It was the fall, which is very common in ALS patients, because once they have that weakness in their arms and hands, they can't stop their fall. The only that stops their fall is their head when it hits the ground. When it was all said and done, she was financially devastated. Her house was in foreclosure. She had absolutely nothing left. So I think I just started HARC at that time, or was thinking about starting harc. And, you know, I said to her, you know, we'll pay for your husband's repass. And I think I had like $2,000 in the bank, and it was $1,000 or something. And it just started from there. And my thought always was, I mean, I'm one of seven kids, and five of us live close to my dad. We kept him home the entire time he was sick. We took turns taking care of him. We all live close enough to be there, but still, at a lot of points, we had a higher home health aides to come in and help because we all worked, we all had jobs. We all. We couldn't be there 24, 7, and that's what he needed. And my thought was, oh, my God, I can't even imagine if I had to do this alone. If it was just me, was the only daughter, how would I would have ever gotten through this? And. And that was with a veteran who had, you know, have we. They pay for home health aides? And what do people do that don't have this advantage and don't have a family and don't have any support? And I started looking for organizations or, you know, anything out there that would provide resources. And there was very little, very little out there. And so I kind of just said, well, why not Me, take a leap of faith, wing it, and let's see what happens.

[05:44] MARILYN MONGIELLO: What I find interesting with Donna's story is that her father passed, but she made a difference. Like, she could have put ALS behind her, but she kept thinking about other people that were in her shoes, and she made such a big difference. And most nonprofits out there are really geared towards the cure, and there is no cure for als. Okay, There. I mean, right now, there is no cure. There hasn't been a cure, and. But people need to live with als, and Donna is one of the only nonprofit that actually helps people live with the disease. My husband is living with the disease for six years. And I'll be honest, when I saw. When I met Donna we were. We were really in a dark journey, and she really put light in our journey. And I actually thought maybe I could actually help my husband, and maybe I could get him the resources that I needed. She. And, you know, it's just a wonderful story about Hark, how she's honoring her father and, you know, his battle with als. And she really made a difference.

[07:06] DONNA YORK: Yeah, I think, too, Marilyn we've talked about when my dad passed. That was in 2009. So it was well before the Ice Bucket Challenge, you know, which everybody, you know, sort of brought als. ALS more out into the spotlight. But back then, I mean, no one knew anything about it. I remember because he used to come. I worked at Hawaii at the time. He used to come every day. And so everybody that worked there with me saw his decline from this strong man who know, was golfing, played tennis, coached all these sports. I mean, this was like a, you know, the consummate athlete. I mean, he taught all seven kids every sport we played. And he just slowly. And, you know, Marilyn because you saw it with Frank, he just slowly declined. Like, he started walking in with a cane, and then he started walking in with a walker. And then the. The last time he was at the Y, he sat in my office and said, you need to get me a ride out of here, like, from my office, out to the car. I said, what are you talking about? The car's outside. He goes, no, I can't walk out the door. I can't do it anymore.

[08:10] MARILYN MONGIELLO: But what's. What's interesting about the disease is his mind is, you know, his mentation is exactly the same before the disease. No, he's completely the same person, personality. It's just that his voluntary muscles are not working right.

[08:33] DONNA YORK: Yeah. And so we ended up. I ended up pushing him out on my office chair on the Wheels in my office chair, put him in the car, you know, took him home, and he passed away two weeks later. But on his own terms. And I think that's important for ALS patients. It was on his own terms, like he refused any medical intervention. He didn't want to feed him. His start in his mouth. It was bulbar. So that was the first thing to go. He couldn't swallow. That's the first thing that really deteriorated quickly. And he didn't want a feeding tube because he didn't want to live like that. But the thing for me, I think what I do for a lot of people now as well, is we had no one to talk to about this disease. No one knew anything about it. There was no one to call and say, what's going to happen? Or what do you think I should do? Or anything like that. And when I finally did get to talk to somebody, it was about a year later, the person, he lost his 33 year old son to it. And we said, we talked for two hours and cried and it was like, God, finally somebody understands how devastating this disease is for the entire family. So I think sometimes too, for me, and I think that's where Marilyn our friendship grew, was just talking about, just talking about it. You know, some of them, you know, you're going through it now. I already went through it. And I just think, because you can't, I mean, everybody in the Y was going, what's, what's, did your father have a stroke? Is your father drunk? You know, because his, his words were slurred. That's what happens, you know, I'm like, no, he has als. And they, and they just, they just look at me like, what's that? And then I would say, Lou Gehrig's disease. And they would say, oh, yeah, I know all about that. Like, no, you don't. No, you really don't. You know something called Lou Gehrig's disease. But you can't possibly have any idea how devastating it is if you've never personally witnessed someone you love battle it or die of it.

[10:28] MARILYN MONGIELLO: So there's a difference between how her father, Donna's father chose to go. He had no medical interventions. And now in today's technology, there are more people that are taking palliative treatment. And that is a feeding tube, that is a ventilator, that is, you know, different modifications. So what that needs is home modifications. It needs mobility vans, it needs bathrooms that are accessible. And when the person is not working because they have ALS and they're disabled and their Loved one is taking care of them so they can't work. Where do you find the funds to get all these modifications? If the person has a will to live and wants to live like that? So it's a personal choice, but if they want to live, how do you, you know, get the modifications, the tools you need to live? And that's where Donners nonprofit comes, you know, and that's where it came in my journey. We wanted to do home modifications. We wanted him to have a shower. We wanted to him to have a generator for the house because God forbid he's on a ventilator. God forbid the electric, the electricity goes off. You can't, you need a backup. And that costs money. We needed to have a ceiling lift because, you know, my husband's been completely a quadriplegic for almost four years now. How do I transport him from the bed to the wheelchair? We needed a mobility van. And that's where Donna's group, they make this. It's called a Hope Mobile. Can you tell a little bit about the Hope Mobile, Donna

[12:28] DONNA YORK: Yeah. So it started, I think, when the first person contacted me and said, you know, do you help with vans? And I was like, well, the way we can help you with, to get a van is if we host a fundraiser for you. You know, because vans are, as you know, average 25 to $50,000 for. And that's a used van for a handicap accessible van. So. But, you know, we want to, we wanted to start this new program to help people get these vans because, and I say this all the time. I mean, I jump in my car and go wherever I want to go whenever I feel like it. You take it for granted that ALS patient, if they don't have this van, they are essentially a prisoner in their home. And especially those with children that want to be at their children's swim meet or be at their children's soccer game or be out, go out with the family, you know, they can't do it. So we, we ended up calling it a hope. The Hope Mobile for pals. And PALS is an acronym for people with als. And we, we did our first van. It was, it was actually the Gregoires was the first Hope mobile. We raised $30,000, bought them the van and gifted it to them with the understanding that if and when you no longer need the van, you give it back to Hark or you to give to another family or you pass it on to another family in your area. So the sad part comes when people call me for a van and I Say, well, we can help you with a fundraiser, but it's going to depend on your friends and family to help raise that money. Because Hart doesn't have, like, a plethora of donors out there that every time I want to buy a van, they're going to give me 30 grand. And they say, we don't have that kind of support. It won't work. Fundraiser won't work, and then there's nothing I can do. But sometimes miracles happen. I consider them miracles. And I just had that situation with a woman in Florida. A big organization here called Imals contacted me and asked if I could help her with a van. So I called her and I said, so here's what we normally do with vans. We, you know, help you do a fundraiser. Then it goes through a nonprofit, and people tend to be a little more generous, and if somebody wants to make a sizable donation, they're more comfortable doing it through a nonprofit. Nonprofit. And she said, well, I just did a GoFundMe, so should I wait? And I said, well, if you're going to target the same people, yes, because you don't want donor fatigue, you know, keep going back to the same people. And they really didn't raise that much money on the GoFundMe, so I was a little not certain they would be able to raise the money. And then a day later, after I spoke to her, and the woman was so sweet and so nice, and as all the ALS patients are, someone contacted me and said, I'm donating my husband. My husband lost my husband als, and I'm donating my van to your organization. So I called the woman back and I said, I have a van for you. And she said, what? What did you say? I didn't hear that. I said, I have a van for you. She goes, what do you mean you have a van for me? I said, a van was donated to me to Hark, and I am going to pay to have it shipped to Florida for you. And she just started crying and just didn't know what to say. And she said, you have no idea how much that means to me. And I said, yes, I do. Yes, I do. I know how much it means.

[15:54] MARILYN MONGIELLO: We got a Hope mobile from Donna and I could tell you. How many years ago did we get them?

[16:03] DONNA YORK: Five or six at least, now, right?

[16:07] MARILYN MONGIELLO: That's four or five.

[16:09] DONNA YORK: Yeah. I don't know. Time, you know, time wise.

[16:12] MARILYN MONGIELLO: But I could tell you how many graduations we've gone to and how many, you know, athletic events we've gone to, and doctor's appointments. And so, you know, it made our. Made Frank's life and our family's life whole again. So, you know, very thankful.

[16:39] DONNA YORK: What Marilyn hasn't mentioned is she has six children, so there was a lot of graduations and sporting events and all those things that Frank got to go to because they had the van in order to get him to them.

[16:55] MARILYN MONGIELLO: Correct. But we also also had home modifications done to our house. And Donna was actually. She not only helped with the fundraiser, but she actually helped with managing it. So she. Not only. She had her, like, she. She really. She was a friend. You know, she was a friend in a time of darkness. And, you know, Donna didn't get anything monetarily out of it. All she gets out of it is knowing that she's honoring her father, I guess. What do you get out of it, Donna

[17:34] DONNA YORK: You know, it's just I always, whenever I do, like, we, you know, when we used to do, we did a lot of in person fundraisers, right? Well, yours was in person.

[17:43] MARILYN MONGIELLO: Yes.

[17:44] DONNA YORK: You know, and a lot of them, we show our documentary, you know, hope on the Horizon. And I always say to people that my father taught me, if you have the opportunity to help someone, you should always take it. And it was just the way him and my mother both were. You know, they. I mean, I'm one of. Like, I said I wanted seven kids, and they taught all of us that, that, you know, you're. You're. You're blessed. I mean, I was, you know, my dad, you know, we grew up in a really great neighborhood and a really nice house and great schools and college paid for the whole thing. I mean, we were really blessed. He was blessed, too. That was. He was blessed to get als, but he was blessed that he was a veteran. We didn't have any of those struggles that everybody has.

[18:23] MARILYN MONGIELLO: You exemplify that quote. And another thing that touched my heart with Donna was that there was a man who helped Donna He was. His name was Josh Valentine. I've always seen him at fundraisers, and I've always seen him just helping Donna and always being part of, you know, trying to help ALS patients. And, Donna can you tell what happened?

[18:56] DONNA YORK: Unfortunately, yeah. So, as I said, we filmed a documentary. And that documentary included two people hiking the 48 highest peaks in the White Mountains in one trip. It had never been done before. They took an ALS patient up the 45th peak. And Joshua Valentine was the driving force behind that. He really, really orchestrated the whole thing. And then once the film was done, you know, him and I went with the film or him and my son or him. My brother went with the film all over the country to raise money for families. He spoke of Hark. And one thing that he always said, and I love this about him, he was like a son to me, was how much his life was affected by meeting these ALS families. And that what I think his quote was what I perceived as my own suffering, like being on top of a mountain in a snowstorm. These people would give anything to be there right next to me, but they can't because they can't walk and they can't. So on March 26th of this year, Josh was killed in a motorcycle accident. He's 37 years old, so.

[20:09] MARILYN MONGIELLO: But you made a difference.

[20:11] DONNA YORK: Yeah. We started the Joshua Valentine ALS Adventure Grant so that we will, as much as we can, depending on how much the fund raises. Every year we're going to pay for an ALS family to go on an adventure of their choosing. And this year we granted it to a gentleman who was diagnosed with als. He was a veteran, but he was diagnosed, I think in 2017. He was given the wrong information. He was told that it was not a service related disability unless you served in Vietnam. So ended up homeless and his wife left him with als. Then he found out the truth that didn't matter what you served, it was an als. It was a service related disability and was able to get benefits. And now he lives with his two sons. But their dreams before he, you know, for as much time he has left is to travel, rent an RV and travel the country. But they can never afford the cost of the rv. So we're paying for the RV for them.

[21:14] MARILYN MONGIELLO: But this is just an example of how. It's just the most amazing thing, Donna Like you've given lemons and you make lemonade out of it. It's just unbelievable how, you know, you've helped so many families, especially with home modifications. Can you tell what you've done with families with home modifications?

[21:37] DONNA YORK: Yeah, that's, that's the other, you know, fundraisers that we do for family because, as you know, I mean, they're very costly. I mean, just a bathroom alone is like $25,000 to modify it to make it handicap accessible. So we, we've, you know, we've done probably, I think, 10 home modifications for people. And if it's like 5,000 or less, like somebody just, just needed, I think one of those bathroom modific places will do, like put in a handicapped tub or whatever. And that's just what they needed. And that was, I think, 4 or 5,000. So we just paid for that kind of a thing. But when it comes to the bigger ticketed items, then we normally need to do a, you know, host a fundraiser. Again, if they have the support of their friends and family to support that.

[22:30] MARILYN MONGIELLO: But. But, Donna you don't take anything monetarily from any of this, correct?

[22:34] DONNA YORK: No. 100% of what comes in goes directly to the families.

[22:38] MARILYN MONGIELLO: And so to me, you know, it's motivated by love. Your. You know, and it's very. It really warms my heart. You know, it's an honor to know you, Donna because, you know, and you inspire me in my journey. I see how much you've done, and, you know, if the whole world was like you, we'd have a better place. You know, it's.

[23:06] DONNA YORK: Well, yeah, but you, you know, Marilyn I know you say it to me all the time, but you, you know, you have no idea how much I admire you and what you do for Frank, you know, with six kids, and you take care of Frank all by yourself. And this is not taking care of someone who, you know is just in the beginning stages of ALS. I mean, this is 100% dependent on you and what you do to get Frank, what he needs, what you advocate for him just recently when he's in the hospital, you know, for 14 days, and you even said to yourself, if you weren't there and you weren't telling these doctors, no, you're wrong. That's not what's wrong with him. You need to do this. He would not be here with you anymore. You know, I mean, you speak to that, like, speak to how. How little the medical community knows about als.

[23:54] MARILYN MONGIELLO: It's. It's. It's very interesting. Well, it's a. Supposedly a rare disease, but you hear more and more people. Yeah, but the one thing about ALS which is different than most diseases is that the person can't move anything. They speak with their eyes. But unfortunately, if it's not calibrated correctly, you know, you always have to calibrate it. So it's not like you could leave them alone and they can just communicate. I need something.

[24:26] DONNA YORK: You mean computer, right? The Toby. His computer that he uses to communicate.

[24:30] MARILYN MONGIELLO: Correct. And, you know, for als, there's just a lot of high ticket items that are needed. And I guess that's, you know, it's Donna's nonprofit. It's just such a gift to the ALS community.

[24:51] DONNA YORK: Well, too. You know, we talked about so many ALS patients make the decision whether to live or die, literally to live or die based on what kind of financial burden they're going to be to their family. And that, that shouldn't be, that should not be anyone's driving force to live or die is how much money is going to cost my family to keep me here. And that's, you know, that's the reality of ALS, though, because your point, you know, they need 24, 7 care inaccessible van. They need their home modified so that their wheelchair can get through it and they can get in and out of the, you know, and if you're the only taking care of somebody, there's no way you're lifting them, need a hoyer lift. They need, I mean, it's, it's. What is it? Over $200,000, right, a year to take care of, keep an, a patient at home.

[25:36] MARILYN MONGIELLO: That's if you had a caregiver. You know, it is very expensive. And having you help people. So people lose their job, you know, they can't work anymore. Their, their spouse can't work because they're taking care of having you help people with, like, electric bills. Can you talk about that?

[25:55] DONNA YORK: Yeah, yeah. I get, you know, a lot of people just saying that, you know, because they're waiting for Social Security come through or, you know, because they're just living on Social Security and they have children. And, you know, I just had someone contact me that I could think had been like six months behind on their electric bill, and it was like 34, almost $4,000. And they said, can you help with any of it? And I said, I'll take care of the whole thing. And they're like, you'll take care of the whole thing? I'm like, yeah, I can. I'll take care of it for you. Because they had other things that they, they needed taken care of as well. And I unfortunately couldn't take care of all of them. But, you know, I just, I mean, again, my family didn't go through that part of it. You know, my dad was a veteran. He had a retirement. You know, we had, we had money to do what we needed to do for him. I never, I never needed help. We never needed help. But again, I just can't even imagine if I had to go even that journey where we didn't need any help if I was the only one taking care of my dad. I don't know that. I mean, I don't know how you do it. I really don't know how you do it, Marilyn And it was only 18 months, my father, and only probably five months of that was where he really needed care Every day. I mean, you do this day in and day out, 24, 7.

[27:13] MARILYN MONGIELLO: The other thing that Donna serves for me is sometimes, you know, emotionally, I need to talk to somebody, and she. She gives me pep talks. I call her up and, you know. You know, but I. I think that the ALS journey is very difficult. But the warrior, the ALS warrior is also an inspiration. And part of my drive in taking care of my husband is seeing how hard my husband works to stay alive and how hard he, you know, the will to live, to see our six kids grow up, to go to graduations, hopefully to see, you know, weddings and grandkids.

[28:02] DONNA YORK: How many girls?

[28:03] MARILYN MONGIELLO: I have four girls. But, you know, I think that we really need to, you know, also touch upon what a fight the ale. It's called the Pals. Patient of als, and their fight is horrific. They can't anything. The only thing my husband can move is his eyes. And, you know, every day, you know, we do basically everything for them, you know, everything. And so I think that another part of both of our inspirations, wouldn't you say, Donna is like, seeing how hard these patients fight to live.

[28:43] DONNA YORK: Yeah. And how. I mean, how. And how much courage. Yes, courage and dignity that they have, you know, like. And they suffer a great deal of pain, too. But I think with Frank, too, and my dad never, ever complained about being in pain or, you know, he. He tried to be. You know, he was the same. To your point, he was the same person. You know, I mean, he still tried to make jokes. No one can understand a word he said, but he was still trying to, you know, talk. Talk to people. And he got out as much as he could. I mean, I told you, you know, he came to the Y every day when I worked there because it was. It wasn't exercise. I mean, he did exercise, but it was a social thing. You know, he didn't want to be stuck home by himself all day long. You know, he just needed that little bit to get out. So, you know, it's funny because I would. I would go pick him up when he couldn't drive anymore, and a friend of mine at the Wise, you know, said to me one day, she goes, that must be really, really hard for you to have to do all that with for your dad. And I said, you know what? I could do this for my dad the rest of my life, and I would never pay him back for everything he did for me, so.

[29:53] MARILYN MONGIELLO: But I also think I hear what you're saying about your dad now. Frank's my husband. When you see somebody Suffer like that. I think it's just a human quality to want to help and, you know, it's just a human quality. You know, it's like. It's like a gift to me to help him because it fills my heart, you know, because you see such an atrocity. ALS is such a heinous disease, and if you can make their life better in any way, I think that inspires both of us, don't you think, to know.

[30:36] DONNA YORK: Yeah, I just. It is. To your point, it's horrific what. What they have to deal with. So it's almost more courageous to live with it than to just say, I don't want to do this anymore.

[30:49] MARILYN MONGIELLO: So I was looking at some of the questions we were trying to, and one of the questions was, what is the worst thing about als? And what's nice about the ALS community is, especially social media, is that you get to meet a lot of people that have this. But one of the worst parts of ALS is how many of our friends have died from this disease. And wouldn't you say that's one of the worst parts?

[31:20] DONNA YORK: It is by far. You know, especially people that I get. Look, you know, I don't get real. I don't get close to every family I help, but I. I have gotten close to some, and then when you find out they're gone, you know, it's a lot of loss. ALS is a lot of loss, because these people that I help, no one's. No one's surviving it. It's just when, you know, ll. And the woman in the. In our film said, ALS is like jumping out of a skydiving plane and wondering whether or not your shoot will open or when. You know, like, I mean, because my dad was 18 months, and then, you know, Martin, who just passed, was 16 years with ALS on a ventilator. You just. You just. You don't know. And I have so, you know, I have people that call me like a woman I've been talking to a lot. You know, she. She called me, said, my husband's diagnosed with als. I. I don't know what to do. Like, what's going to happen? And I'm like, honestly, no one can tell you that. No one can tell you that six months from now, your husband's not going to be able to talk or not be able to swallow or not be able to walk. It could be two years from now. Could be two months from now. I mean, because everybody's different, right? Everybody's journey is different. And you just not even. You know, I. Some People said, well, the doctor said, go home, get your affairs in order. Michael, go to a new doctor. Because that doctor does not know how you know you have two to five years to live. Go home and get your fears in order. He. I said, he doesn't know that. I don't. I don't. Unless he's God, he doesn't know that. Because not every single ALS patient only lives two to five years. Some live less, some live way more. And this woman, Ellen, she's been living like 14 years. She's still not on a ventilator. You know, I mean, she real, she's confined to a wheelchair, but she's not on a ventilator. So it's just.

[33:12] MARILYN MONGIELLO: And that's a very interesting point. When you see one ALS patient, you've seen one ALS patient. And that's one of the reasons why I think it's so difficult to find a cure, because all ALS patients progress differently. So when they are testing drugs and the response is so varied that they really can't, you know, get a drug approved, and that's, that's very difficult.

[33:39] DONNA YORK: Yes, yes. Yeah. But plus, you know, plus, I mean, it's been. I mean, it was around well before Lou Gehrig, but it's been 80 years and zero progress in any kind of a treatment, you know, treatment or a cure. So, Marilyn one thing we talked. I wanted to ask you, how has ALS affected your family? How do your kids deal with it?

[34:07] MARILYN MONGIELLO: So first of all, my kids have matured too much. They're dealing with such serious issues. And all of my kids, plans have changed dramatically. Instead of going to colleges in different states, they've all stayed local. We have shifts in our house, we have day shift and night shift. And the kids, it breaks my heart, but they say we have to do the night shift for mommy because we can't have our mommy health, you know, impaired. So we have six kids. So they each take a turn doing the night shift for the father, and he can't be alone for a second. And throughout his progression, each of my kids have, I'm so proud of them. They have, you know, with tube feeding, with ventilator care, with transferring, with calibrating his Toby, his speech generating device, with positioning his arms, with dressing him, you know, it's a lot. And my children have, you know, been all gung ho. They're all in whatever. And it's just, I'm so proud of them. And the love that they have for their father is so evident. And it's such a wonderful thing to Watch. So I would say ALS has brought. You know. You know, we talk about all these negative things about als, but I have to say that it has brought such beauty and a different perspective than most families and the children and myself. And I think, Frank, we all realize that, you know, time is never promised, and we appreciate the moment.

[36:04] DONNA YORK: Yeah. And your older daughter ended up becoming a nurse, correct?

[36:08] MARILYN MONGIELLO: I have two kids. One is working on being a nurse, and the other one is a nurse. So. Yeah.

[36:14] DONNA YORK: Who else is going. Who else? Samantha. Who else is going to be a nurse? Sam. I really don't think I knew that.

[36:20] MARILYN MONGIELLO: Yeah. So she's. And Dean's List, no less.

[36:24] DONNA YORK: Well, all your kids are very intelligent. Is it one? I'm doing a master's in accounting.

[36:29] MARILYN MONGIELLO: Yes. Yeah.

[36:31] DONNA YORK: And you as well went to University of Pennsylvania, correct?

[36:34] MARILYN MONGIELLO: Yes. But the thing about als, just. And it's interesting because Donna came from a big family, and I have a big family, and we both can attest to the beauty of family and how we surround the father. And, you know, you hear a lot of crazy stories in the world, but, you know, this. This is a beautiful thing about als, how the family is just very close and very loving to their father.

[37:10] DONNA YORK: Yeah, yeah, yeah, I agree. I think the one thing a little different with my dad was, you know, because we were all older. He was older. I think the hardest thing for him was for us to have to take care of him after him taking care of us for our whole lives. You know, I think that that was the. That was the hardest part for him. But. And we each had our role. You know, like, my role was more. You know, I did all the paperwork for the. For the VA and that kind of stuff. And my brother, you know, my other sister kind of took, you know, took more physically care of him and. And that stuff. But I've always said that the ALS community is definitely not one that you ever want to be part of if you have a choice. But if you don't have a choice, you're never going to find more supportive people in the entire. In the community than in this, you know, because if you've been through it, you know what that family is dealing with, you know how hard it is, unlike anybody who has never been through it, cannot understand it, and it's very hard for anyone to wrap their head around, even for me, having watched my father, that you could be. Your mind could be 100% cognizant, and you cannot move one muscle in your body. You are essentially. I mean, ALS patients describe it as being buried alive. Just. It's just so hard to even fathom that. And then being courageous enough to live to be there for your children.

[38:47] MARILYN MONGIELLO: Frank, my husband, is such an amazing role model to us all. And, in fact, when he got diagnosed with als, he wanted to make a difference as well, and he made a difference. He went to Washington and he tried to make a difference with the cure and try to get access to different drugs. So, yes, I think that pals are very courageous, and they're role models. And I think because they're such role models, it inspires both you and I to do what we do. Me taking care of my husband 24 7, and you to help other families, you know.

[39:32] DONNA YORK: Yeah, we'll both continue to do that for, hopefully for you for a long time to come. And me, too. This has been a great conversation. I appreciate you joining me today, Marilyn So I think it's. We're being told it's time to wrap up, so I think it's a great way to end it. How courageous both of our pals were and how we continue to do what we do in their honor and their memory.

[39:55] MARILYN MONGIELLO: Thank you. Thank you for all you do for us.

[39:59] DONNA YORK: My pleasure.