Episode 72: Melissa DeAngelo DiStefano, ALS

Intro Voices  00:04

Where do I go? It only happened once. I think I was singled out. The phone calls began about one month ago. What is hazing? Something happened to me when I was younger. I'm worried about my safety. He said he was sorry. Can someone help me? Where can I get help? Can someone help me?   This is You Matter, a podcast for the NYU community developed by the Department of Campus Safety.  Where do I go? I was singled out the phone calls.

 

Karen Ortman  00:35

Hi, everyone, and welcome back to You Matter, a podcast created to teach, inspire and motivate members of the NYU community who have been victimized in some form or fashion and to identify resources both on and off campus that can help. I am your host Karen Ortman, Associate Vice President of Campus Safety Operations at the Department of Campus Safety, and a retired law enforcement professional. Today I welcome Melissa DeAngelo DiStefano. Melissa's father Ed DeAngelo was a lieutenant in the Ewing Township, New Jersey Police Department, when he was diagnosed with Amyotrophic Lateral Sclerosis, otherwise known as ALS. Lieutenant DeAngelo died from ALS four years after diagnosis. Melissa, now a nurse, is here to share her father's story and his life with this unforgiving disease. Melissa, welcome to You Matter. 

 

Melissa DeAngelo DiStefano  01:35

Thanks for having me, Karen. 

 

Karen Ortman  01:37

My pleasure. So tell me about your father. Who was Ed DeAngelo?

 

Melissa DeAngelo DiStefano  01:43

Sure, so he was the greatest dad ever. I know, everyone says that, but I obviously I'm a little biased. My dad was born and raised in New Jersey, a lifelong athlete, really strong guy, like everyone says, a man's man. If you think of a man's man, that's what my dad was. He had the biggest heart in the world. He didn't care about himself, all he cared about was everyone else. He went to college briefly, I want to say for like six months, and then passed the police test so he became a police officer. Quickly, in his 20s, he married my mom, then had myself and my brother. He spent 20 and a half years with the Ewing police department, where he retired as a lieutenant. He worked even after diagnosis, Everyone I talked to, even before he passed, it's just such a proud thing to say that I'm his daughter, because everyone has these stories. There's always a story to go along with him. It just it makes me proud that people have such an impact from being a part of his life as well as him being a part of their life.

 

Karen Ortman  03:05

I'm sure he would have tears in his eyes right now if he could hear you. Perhaps he is listening to you.

 

Melissa DeAngelo DiStefano  03:10

I think he is. He was he was just my teddy bear. I'm sure he wasn't like that at work, but he was just one of those people you want it to be around.

 

Karen Ortman  03:24

So tell me when did things start to change, prior to diagnosis?

 

Melissa DeAngelo DiStefano  03:31

So, he was officially diagnosed October of 2012. He had symptoms for probably, maybe up to a year and a half before then; just these strange like voice changes. He almost sounded like he was going through puberty, like his voice would get really loud and then squeaky. It was really, really strange.

 

Karen Ortman  03:54

And what would he do when that happened?

 

Melissa DeAngelo DiStefano  03:56

He would laugh. He would just like, ugh, nothing. I don't think at that point he knew what was going on, or if you knew he was in denial.

 

Karen Ortman  04:07

How old was he at this time?

 

Melissa DeAngelo DiStefano  04:09

He was 51. We had a huge 50th birthday party for him, and then like a year after that is is when things kind of started to go downhill.

 

Karen Ortman  04:23

Yeah. What other things did you do observe? 

 

Melissa DeAngelo DiStefano  04:28

I didn't know this, and my mom didn't know this until he went for a second opinion at an ENT, but he apparently was having, they're called fasciculation, muscle twitches, in his tongue. If you Google that right away it shoots you straight to ALS. He was seeing an EMT and the EMT, I guess, said like, you really need to go for a second opinion I think there's something neurologically going on. My mom went and that's when the EMT said to my dad, how long have you been having these muscle twitches? And my mom, I guess, looked at him like, what are you talking about? He said six months. He had been obviously having some type of symptoms that we didn't know about. The one symptom that I remember him saying was he was just having a slight twitching in his bicep. Really it was the voice changes, and it just felt like you couldn't understand him sometimes, like, he sounded like he had marbles in his mouth.

 

Karen Ortman  05:33

And this was for a year and a half.

 

Melissa DeAngelo DiStefano  05:35

Yeah, it kind of obviously progressed. The voice changes, I'd say, became more severe as it got closer to the summer like that July and August right before he was diagnosed. I at this point was in nursing school, I'm sorry, I wasn't in nursing school at this point, I was thinking about going back, but I hadn't started yet. I was like, maybe he has throat cancer, you just don't. We knew something was going on on that, it sounds horrible, but my dad's entire family, all the men had died of massive heart attacks. At 50, like he would be one of the only ones to make a pass. I'm like, okay, cool, he's past 50. 

 

Karen Ortman  06:20

You said that over the course of a year and a half your father experienced twitches, voice changes, tingling in his bicep. Anything else notable?

 

Melissa DeAngelo DiStefano  06:34

Not that I know of, those were really the biggest changes. It was never spoken about, you know, between us. It was kind of my mom just saying that my dad was getting looked at by ENT and there was nothing. I don't think at that point she knew exactly what was going on.

 

Karen Ortman  06:57

Whether it was anything serious?

 

Melissa DeAngelo DiStefano  06:58

Yeah. I mean, it sounds crazy but with ALS you're ruling things out. I think it's it is hard, obviously, to narrow down. You don't want to jump to that conclusion, but when I look back, my dad had been googling on my computer, you know when you type things in...

 

Karen Ortman  07:23

Yeah. And there's a history.

 

Melissa DeAngelo DiStefano  07:24

Yeah, he was like, using my computer all the time. I use it for school. He was looking at myasthenia gravis, which is another neurological disorder. It can cause these, you know, kind of weaknesses and things like that. I don't know if he thought he had that, maybe? It was just something I found a couple months later, and I was like, I didn't look this up. 

Karen Ortman  07:48

Interesting. 

 

Melissa DeAngelo DiStefano  07:49

Yeah, I don't know, he hopefully thought that he had that.

 

Karen Ortman  07:52

Yeah. What was the final sort of straw that got him to look into what had been going on for a year and a half a little further?

 

Melissa DeAngelo DiStefano  08:04

The second ENT he went to, this ENT he went to, after all of this, we say he saved his life. The other ENT looked at him like he had 10 heads. He was like, I don't know what's wrong with you. 

 

Karen Ortman  08:18

And that's ear nose and throat, right? 

 

Melissa DeAngelo DiStefano  08:19

Yep. 

 

Karen Ortman  08:20

Okay. 

 

Melissa DeAngelo DiStefano  08:20

So he told him he needs to see a neurologist. So, unbeknownst to Chris and I went with my mom to neurologist. Obviously had it he had muscle testing done and PET scans, you know, scans of your whole body, MRI, CAT scan, bloodwork, everything. Again, like I said, it's a rule out. It's not like he could say, okay, this one image shows that you have ALS. My mom said it was Columbus Day of October 2012 that the neurologist called them back into the office and said, this is before Chris and I knew we, I'm sorry to say we believe that you have ALS, but I want you to get a second opinion. They were gone for like eight hours. It's a really long, long day. My mom said they only sat in the office for 10 minutes, the woman just had to say what he had and then there was nothing to do but on with your day. My mom looked at my dad and said, do you want to just go get drunk? Like she said, what are we supposed o do?

 

Karen Ortman  09:27

Wow. So he was told that it was likely ALS.  Yep.  And that was the extent of the appointment?

 

Melissa DeAngelo DiStefano  09:33

It was kind of, I mean, the doctor basically said this is what it is, but I I urge you to get a second opinion. She really just wanted to make sure, but she obviously knew what she was talking about. A

 

Karen Ortman  09:48

So did he get a second opinion?

Melissa DeAngelo DiStefano  09:49

He did. So then he went to Penn after they told us. He went to Penn and they said the same thing. It's so weird, even when I say it now, I haven't spoken about it in a while, you'll go through phases where you speak about it and then you don't. It just feels heavy sometimes, it kind of takes your breath away.

 

Karen Ortman  10:15

Yeah. And, I guess, because the prognosis isn't good.

 

Melissa DeAngelo DiStefano  10:20

Yeah. I mean, there's no cure. You're kind of just sitting there with a death diagnosis, and you figure out how to get on with the rest of your life, I guess? It's a strange, strange thing.

 

Karen Ortman  10:37

So, he's told that he has ALS. 

 

Melissa DeAngelo DiStefano  10:40

Yes. 

 

Karen Ortman  10:41

The second opinion at University of Pennsylvania was ALS, like it had previously been told by the other doctor. Where did he go from there? At what point did you learn about ALS?

 

Melissa DeAngelo DiStefano  11:03

Sure. I learned that he had ALS in between those visits. He found out, I want to say, on a Tuesday, Columbus Day weekend or so. My parents didn't tell us for about another week. I don't blame them. I think they just needed somehow, I don't know how they didn't come home and blurt it out, but they must have just needed time to just... 

 

Karen Ortman  11:31

Process it. 

 

Melissa DeAngelo DiStefano  11:32

Yeah, figure out how to even process it for themselves, along with just being parents. I vividly remember it was a Sunday. My dad and I are huge Giants fans. My brother's an Eagles fan and my, now, husband is an Eagles fan, so we would just sit on Sunday on opposite sides of the room and not speak for like eight hours. 

 

Karen Ortman  11:58

I'm team giants, so...

 

Melissa DeAngelo DiStefano  12:00

Yeah.

Karen Ortman  12:01

 I understand that part.

 

Melissa DeAngelo DiStefano  12:05

Andrew always came over for Sunday dinner, things like that. My mom's like, can you just make sure that Andrew stays for dinner? I was like, yeah, sure, whatever. So um, the Giants had lost, and literally I'm having vivid memories, it's about 4:30 because the game ended at four and we're all in the den. My dad asks my brother, can you come and sit down. I remember my dad was just sitting there. My mom just said, we want to talk to you about daddy. I just got this pit in my stomach. I thought they were gonna say, okay, he has cancer and she said, they think that he has ALS.  I felt like someone took the floor out from underneath me, because we know what that was. I knew that it was fatal. I knew that Lou Gehrig had it. I didn't know all that encompass. I just knew my dad's gonna die. You know, it's it just, it was just, I still don't have the words for it. It sounds really crazy to say that, but I just remember looking at him, like, how is it possible? Like, I mean...

 

Karen Ortman  13:19

What did he say?

 

Melissa DeAngelo DiStefano  13:21

He was crying. And my dad was, and this is what I loved about my dad most, he was a big strong guy, but he would not hide his emotion. He was upset. I mean, he would hug and cry, and that was him. I think that was probably the hardest part for him was being the one that needed consoling in a way, but kind of also showing that he wasn't completely indestructible. I just said, okay, so what's the next step? My mom said, at that point, that they were going to go for the second opinion and things like that. 

 

Karen Ortman  13:59

So they had not yet gone to University of Pennsylvania?

 

Melissa DeAngelo DiStefano  14:02

No, but in my mind, as much as I want to start planning, I also in some strange way, I was holding out hope that maybe this is the wrong diagnosis. I mean, I think anyone would feel like that, so I was trying to start planning, but also hoping that it was wrong. At that point we just kind of went on with life normally, but my dad would come home sometimes and just look at me and just start crying, or would walk by me and smile and then cry, and I think it's just like...

 

Karen Ortman  14:41

Did he ever say anything?

 

Melissa DeAngelo DiStefano  14:44

Yeah. I mean, I would email him and text him things because I didn't want to bring it up. He would just say to me, I just don't want to leave you guys, there's so much to do. He just, I think he was just so worried about us. We were so worried about it. We all just we're so opposite, like we're worried about him, he's worried about us, right?  I will say, to this day, I never heard him say why me or like, his sucks; never ever. It was never a pity party. I think he was crying because he was worried about us, you know?

 

Karen Ortman  15:29

Yeah. He's diagnosed officially in October of 2012. This was after the Eagles/ Giants game; they will tell you that he believes he has ALS. 

 

Melissa DeAngelo DiStefano  15:44

Yep. 

 

Karen Ortman  15:45

After the second diagnosis did you start to see changes right away, or was it delayed? 

 

Melissa DeAngelo DiStefano  15:56

Nooo.This sounds strange. He had somewhat of a slow progression. In the beginning, and when I say the beginning I mean, I would say like, some diagnosis. He was definitely losing weight, you could tell because he was a big, big guy. I said he was like a turtle because he had like no neck, he was just a big stocky guy.

 

Karen Ortman  16:24

Did you tell him that? That he looked like a turtle? 

 

Melissa DeAngelo DiStefano  16:26

I did, but I would run. Only on the good days when I already got what I needed. 

 

Karen Ortman  16:33

Yeah. 

 

Melissa DeAngelo DiStefano  16:37

I could tell was having issues swallowing, he was having issues, obviously, leading to the weight loss. My parents are known for their Christmas party; they have this massive Christmas party every year. My dad still wanted to have it, because that's his thing, he goes to South Philly and gets his sausage, that is his domain. No one knew at this point, just my mom, Chris, my husband (my boyfriend at that time), and then her family, immediate family, that no one knows. I remember people coming to the Christmas party, and they'd be like, Eddie, what's wrong with you? Laughing and thinking he was drunk, I think because his voice was just so hard to understand at times.

 

Karen Ortman  17:25

So prior to your father's diagnosis, you had an interest in nursing.

 

Melissa DeAngelo DiStefano  17:30

Yeah, I had wanted to go back. I was an aesthetician before, right out of high school, and then I had wanted to go back to nursing school really for no reason, I had no life changing event that happened until this. It all kind of was weird how it formed. It was like the universe knew that this would happen, that I should go back. I hadn't had any nursing skills or anything like that at this point, so I couldn't do anything for him physically, besides support him. This is when he finally started to tell people that he had it, because I wanted to do this walk. My mom said, she can't raise money if people don't know that you have this. I just, I was like, I have to do something. I said, you know, whatever money we raise is going to this organization and it will help people, and it will help you, and if it can't help you, it will help someone else.  I just couldn't sit back and watch my dad slowly die and and do nothing.

 

Karen Ortman  18:40

Let's go back to the Christmas party where it was right after he learned that he had ALS and it was this big event that he has every year. Did he share with anybody that night, his diagnosis?

 

Melissa DeAngelo DiStefano  18:56

I know people had been asking my mom, is he okay? Even my cousins would ask my mom, is he okay? She said, yeah, we're getting everything looked at, it's fine. At this point, people at work, I think we're obviously noticing these changes. The story is so typical, someone asked him at work, what's going on, like, what's going on with your voice, or is everything okay? He says, the doctor told me just to chew more gum. Like, what? Who says that? I

 

Karen Ortman  19:31

He wasn't ready to share.

 

Melissa DeAngelo DiStefano  19:33

No, not at all. I think as much as he wasn't ready at that time, how crazy it is that he at the end what a 180 he did in how he handled everything.

 

Karen Ortman  19:49

How long after diagnosis did he end up sharing with not only his marital family in his extended family, biological family, but his friends who are like family to him as well?

 

Melissa DeAngelo DiStefano  20:11

Probably three or four months. My mom basically kind of pushed him and just said, we have to tell people,. We laugh to this day, we said he would have just never told anyone like, things would have progressed, but like it was just another day.

 

Karen Ortman  20:32

Tell me about the deterioration between October of 2012, he has the Christmas party, and then four months passed before he shares with any extended group beyond his nuclear family.

 

Melissa DeAngelo DiStefano  20:48

Like I said, he's working this whole time. He's working extra jobs, he always kept busy, he would just do things.

Karen Ortman  21:00

And how much decline was there between the Christmas party and the four months where he finally told people?

 

Melissa DeAngelo DiStefano  21:08

Not much. His speech was really the biggest issue. That continued throughout his whole diagnosis. I think my mom, it sounds corny, but she became his voice, I think physically and emotionally, especially throughout the disease.

 

Karen Ortman  21:34

I don't think it sounds corny at all. 

 

Melissa DeAngelo DiStefano  21:37

She would laugh at me because I sound like her saying that, but...

 

Karen Ortman  21:41

We do turn into our mothers.

 

Melissa DeAngelo DiStefano  21:44

We do we do. We look like our fathers, but we turn our mothers. It was definitely the speech. I think people were starting to notice and were asking him questions. I believe my mom was just saying, you know what, you could just tell people and then there doesn't have to be these questions. You know, like, you don't have to feel uncomfortable, you could just three, I think my mom felt like, don't you want to just breathe and let this out. I never asked him this, but I don't know if for him, not telling people was a way of keeping it out of his mind.

 

Karen Ortman  22:26

Maybe a form of denial. If he doesn't have to talk about it it's not happening. Isn't it true that the main symptom of ALS is muscle weakness? 

 

Melissa DeAngelo DiStefano  22:35

Yes. 

 

Karen Ortman  22:36

And then the brain is completely intact throughout all of this.

 

Melissa DeAngelo DiStefano  22:40

Which I think is the most sad part of it, yes. 

 

Karen Ortman  22:44

After he shared with his friends and no longer hid the diagnosis, did he talk about living with ALS?

Melissa DeAngelo DiStefano  22:57

He knew what was coming. He knew that most ALS patients die from respiratory failure. For him, I think, he thought that basically he would have no function, mobility, and that's why he wouldn't want to have a tracheostomy and a feeding tube. That's not what happened, but I think in his mind most, 80%, 90% of ALS patients it's their limbs that go so at that point, they are pretty much bed bound.  I think most of them realize their quality of life is not what they thought, or would want, so they obviously choose to not have it. For him, he was moving everything, it's just he was basically drowning in his secretions and having difficulty swallowing and things like that. He spoke about, before it progressed to that, basically, what he didn't want, and we all knew.  I was more vocal about all of this than Chris, but I supported him. I said, whatever you want, it your body, this is your journey as horrible as that is, but I will support you. I want you here forever, but he has no control over something, let him control what his body will be doing or not doing. 

 

Karen Ortman  24:26

So he said the worst case scenario would be a trache, which he did not want. 

 

Melissa DeAngelo DiStefano  24:33

He was adamant. Just let me be and be see as I am. He didn't want it.

 

Karen Ortman  24:45

So how did the progression happen for him? Diagnosed in October 2012 and ultimately passed away August 19, 2016, almost five years ago?

 

Melissa DeAngelo DiStefano  25:04

Yeah, so he's diagnosed in October, he starts to tell people January'ish, and it kind of sprinkles down into spring. We planned these family trips that summer and we're just like, we're gonna go on all these family trips. My mom's family surprised us with money to go to the Bahamas. I think he was embarrassed about that, because he's like, if I want to go on a trip, I'll take them on a trip, but my mom's family just felt like, we want to help. The problem was, I mean thank God he had great insurance he didn't need help with that, but people were just like, we want to help to give you something to make it a bit better and have happy things. Chris actually, my brother turned 21 that June so we went to Chicago for his 21st. We went on all these family vacations. I remember in Chicago, my dad's symptoms were all from the chest up and breathing can be an issue, and like I said, he was having trouble swallowing and things like that but the muscles in your neck, obviously are supporting everything and those were starting to go. He would get really fatigued walking.

 

Karen Ortman  26:24

How soon after diagnosis was this?

 

Melissa DeAngelo DiStefano  26:27

This is now almost eight months, because it's like June, July. So yeah, eight months. He's a big strong guy. He wants to walk and we're walking around Chicago, and he loved Chicago. He wanted to show Chris and I and my mom everything, and he couldn't handle it. He physically would just get winded within a block.

Karen Ortman  26:53

When you were in Chicago, he was able to walk around?

 

Melissa DeAngelo DiStefano  26:56

Yes, with a lot of stops. He was still himself, he was still working, but you're noticing the decline in the muscles and the fatigue. He obviously, which makes sense to me, would get frustrated. We also as a family had to just stop, because otherwise he just wouldn't. We would just say, okay, we're going to rest. I think if we didn't stop walking or things like that he would get frustrated. It almost was like, okay, well, they are able to do all this and I can't. I think, that again, was a reminder that if we all stopped together, it was fine, but if we we're doing things and he had to stop on his own, it was something else he can't do.

 

Karen Ortman  27:56

How long into diagnosis did he lose his ability to speak?

 

Melissa DeAngelo DiStefano  28:02

I would say around this time in June, it's like, eight, nine months. That summer, when we did with all these vacations, we basically vacationed no lie from June until August. We went all over, we went to the Bahamas, we went to South Carolina, we did Chicago, we did all these things. He really couldn't eat at that point. He would eat a couple bites and even that, I think, was hard. His speech at that point was minimal. When I say minimal, it was so hard to understand him at times.

 

Karen Ortman  28:41

So this was a quick progression.

 

Melissa DeAngelo DiStefano  28:45

Yeah, it felt like the summer. Again, we were doing so much and he would be working out. He asked that the doctors, can I work out, and they said yeah, but I'm just letting you know, it might speed up your disease because your muscles, they're not building they're wasting. As much as you're trying to hold on to that, it's not helping. I'm gonna within the eight to nine months is when things really started to move quickly.

 

Karen Ortman  29:16

How did it change life at home?

 

Melissa DeAngelo DiStefano  29:21

Oh, home was stressful. I think that's the biggest thing that people think when they look at our family; that we handled it so gracefully. I think in some ways we did, but no one was with us 24/7. It was hard. He was so adamant again on doing things and not needing help that it was a balance. I know for my mom, she went from the wife to his voice, still his wife but kind of literally being his voice at the restaurant ordering food for him and things like that. His caretaker.  Yeah, and that role changed. At that point, Chris was in college at TCNJ, so he was close, but he kind of moved away from it a little bit. He would stay out, stay at his friend's house a lot. I think it was too much at home. I didn't, not that I didn't have a choice, I wasn't going away to school, I wasn't doing things like that, so I was home.  I feel like I saw the evolution of just how bad he felt. It's just, I feel like it takes away, it changes your life obviously in a profound way, but also in your daily tasks. Lifting things like the laundry basket for my mom, I was lifting it because he would try to lift it and he would drop it, then he would get mad. I would try not to get mad that he was getting mad, because I felt so bad, but sometimes I was just like, can I just do this so you don't have to worry? I think to have your daughter say that, I'm sure crushed him, because he did everything for me. Everything.

 

Karen Ortman  31:26

How did your mom cope?

 

Melissa DeAngelo DiStefano  31:32

I think she's amazing. I think she's, uh, we said he was our Superman, and she's our super woman. She just handled everything with grace. She has the patience of a saint. We've always said that. She raised me so she definitely does. She just took it. She just said, this is our life and we have to make the best of it. Like she said those words, but she also lived those words. She just handled everything, like when things started to progress and she would say, okay. She was always trying to stay one step ahead. So you don't want to trache, what is the next step if you don't want that? Is there anything else that we could do to make life a little bit easier? I'm sure it was hard, because she's speaking to him, like we said, as his wife, but also as this caregiver, and she just always kept it positive, even when it wasn't. We would all have these moments where we were just like, oh, my God, this is too much. But she...

 

Karen Ortman  32:44

Kept it movin'.

 

Melissa DeAngelo DiStefano  32:44

I don't think we would have gotten through it without her.

 

Karen Ortman  32:49

There came a time when he couldn't talk and he couldn't swallow. What did you do?

 

Melissa DeAngelo DiStefano  33:02

It was another Sunday, I was up i at MetLife for the Giants game and dad was an Uncle Mitch's, that’s literally his best friend. They were there watching the Giants/ Eagles game, and I guess he just wasn't looking good. The next day he said to my mom, you know, I just want to go into the hospital, maybe I just need an IV, I just feel really dehydrated.

 

Karen Ortman  33:29

So he spoke these words to your mom.

 

Melissa DeAngelo DiStefano  33:31

He's like speaking but it's more, he had, it's called text to talk. He would do that a lot. A lot was texting. 

 

Karen Ortman  33:40

Okay. So that's how he communicated when he couldn't really talk.

Melissa DeAngelo DiStefano  33:44

Especially because he'd get winded at this point, so obviously if he's tired and then trying to speak would even be worse. So, he's basically just saying to her, I'm dehydrated. Again, this man, I don't know where he's coming from, but he's saying that. They go into the hospital, and at this point, I think they did use some IVs and things like that, but his vitals were fine, and his breathing was fine. Two days later, he goes into the hospital, gets admitted, and is on what's called bipap, a lot of people wear it at home if they have like, sleep apnea, it goes over your face. It sucks, he just wasn't making enough oxygen and he wasn't comfortable. So, my mom's at the hospital that week and that's like Wednesday and then Friday night she's there and she's like, you know, they were watching him and think he probably has aspiration pneumonia because he's not swallowing his food and it's probably sitting right in his lungs. Then she called me that Saturday morning and she's like, can you come to the hospital and I was like, okay, but I kind of stalled, because I was like, this is weird. She wouldn't ask me to come here if she was handling it with her and two of my dad's best female friends that are nurses. And you didn't ask her why? No.  I think I knew; I think I just didn't want to ask. I think I just didn't want to ask that. Like said, I was not a morning person and at seven o'clock in the morning, she was like, you got to come to the hospital. I'm like, I don't want to wake up. I get there and she's like, they had to intubate daddy. I just lost it. Now he's on a ventilator and sedated. I vividly remember walking past the room. I just couldn't even look at him because I was overwhelmed. I just thought that this was the end. I was like, he's not gonna come off of this, or he's gonna need to be trached and he doesn't want that. So he's intubated, and he's in the ICU, he stays in the ICU for three weeks. He gets intubated three separate times. They tried bipap. They try everything. They're like, you have to make a decision. I remember the third time, he's really sedated, because they would lighten his sedation and he would come out of it and be like laughing on the ventilate. Now, he's got a breathing tube down his throat and he is laughing and trying to write things to us. He's still living his, like, he's just, yeah, I'm like. The doctor said to my mom, you have to make a decision. She didn't feel comfortable making that decision, because she said, he always told me he didn't want a trache. I guess she got them too lighten the sedation, and he agreed to it. The day after he ends up being trached, getting the trache and the feeding tube, my mom said the next day he writes on the board, you made the right decision. She said, no, you made this decision. I think, honestly that he was so happy with that, because he could move everything. He just needed it to breathe. 

 

Karen Ortman  37:26

How far into the diagnosis did that happen?

 

Melissa DeAngelo DiStefano  37:30

That was literally like a year to the day almost that he is in the hospital. Then I'd say those three weeks later is when he gets trached so 13. I'd say 13 months into it

 

Karen Ortman  37:44

So we're into 2013.

 

Melissa DeAngelo DiStefano  37:47

Yep, we're in 2013. Yeah. So pretty quick. 

 

Karen Ortman  37:52

At this point, what's going on in your life, and in your brother's life? Your brother's still at College in New Jersey? 

 

Melissa DeAngelo DiStefano  38:01

Yep. He's still at the College in New Jersey. I'm at this point in my first or second semester at Mercer taking my nursing pre-reqs and am starting to apply to nursing schools. Those three weeks were crazy for Chris and I, but I just remember, I would like go to class, come back to the hospital, go home study, go to class, come back to like, it was just, I don't know how we did it. I would study for class in the hospital. My mom said, I will not let either of you drop out of class or fail a class, and if you try to blame this on your father, I will go to these teachers. She said, there's absolutely no reason and your father will kill you if he knows that you are not in class, this is your job. Your job is for both of you to get an education. You're both smart kids, you both know what to do. You got to go to class. 

 

Karen Ortman  38:57

She sounds amazing.

 

Melissa DeAngelo DiStefano  39:10

She really is.

 

Karen Ortman  39:14

How was she? How was she during this time period. 

 

Melissa DeAngelo DiStefano  39:18

Amazing. 

 

Karen Ortman  39:20

Yeah. 

 

Melissa DeAngelo DiStefano  39:24

My mom is emotional. She's not as emotional as my dad. Like, my dad and I are just outside and I'm crying. She just holds it together so well. Yeah. At one point in the middle of everything, like the middle of the hospitalizations, I know she was just so overwhelmed because she just had no idea what to do. I think she just felt so stuck, but she just to me, I think he did so well -when I say well, I mean with ALS, he stuck with it so long because he had her. I really think she was just his rock, you know, mentally, physically, emotionally. She just, again, she didn't have this pity. They both didn't have this pity party thing. She just kind of knew, like I said, this is what we're dealing with, this is what I have to do. I'm sure she felt like, why is this happening? I don't know anyone that that would say different, but she didn't show it. She just did it. I don't know, it's just...

 

Karen Ortman  40:40

So how long was he in the hospital after he had the trache?

Melissa DeAngelo DiStefano  40:44

So he went to rehab after that. He went to rehab like very quickly for about three weeks. He came home the week of Thanksgiving. He hadn't been home from the beginning of October till the end of November

 

Karen Ortman  41:00

Of 2013?

 

Melissa DeAngelo DiStefano  41:01

Yeah. So he comes home, and he trached, and he suctioning himself. I mean, he's just doing everything. It was an adjustment, obviously. The house had to change and we had to make sure equipment was downstairs and upstairs, things like that, but he was just doing it. He just, I don't know, he was driving with a trache. I have a vivid memory of him and I driving to Dunkin Donuts, because he was very adamant. He liked his hazelnut coffee with two sweet and low, and even though he could not physically drink it, he liked the smell.

 

Karen Ortman  41:49

So he would get this coffee to just have it so he could smell it.

 

Melissa DeAngelo DiStefano  41:54

Yeah. He would, you know, he had the feeding tube. Sometimes, as things progressed, he became like this diva, he wanted everything in this feeding tube. If we had dinner, he had dinner, we mashed it up in the NutriBullet, and he had it.

 

Karen Ortman  42:12

He wanted everything you guys are having. 

 

Melissa DeAngelo DiStefano  42:13

Yeah, literally family dinner was family dinner, because the four of us ate the same thing. 

 

Karen Ortman  42:22

When did you see a significant decline? 

 

Melissa DeAngelo DiStefano  42:30

Probably, I'd say, October of 2014, that fall. 

 

Karen Ortman  42:42

So two years later? 

 

Melissa DeAngelo DiStefano  42:43

Yeah. You could just tell it was starting. He was requiring more mobility help, and it was just wearing on him. He lost a lot of weight. I think I weighed more than him at that point. He just looked like it was progressing. Andrew and I had spoken, and I had always planned on getting married and everything after I finished school, even at this point. Dad and Mom, you know, we all had said, this isn't a reason to change things. I wasn't going to rush and get married, or rush and do things, but at that point, I realized that I wanted him there. I knew he would make it at that point. You know, when he was diagnosed, I didn't, I thought...

 

Karen Ortman  43:41

You had time?

 

Melissa DeAngelo DiStefano  43:42

Yeah. I realized we have some time. I think looking back we realized, I think the stress of the wedding plan, I think he was so worried he wouldn't make it to a wedding then that um, it seemed like things progressed...

 

Karen Ortman  43:59

Even more so?

 

Melissa DeAngelo DiStefano  44:01

I just felt like he was really struggling. I think it was probably emotional, as emotional as it was physical for him at that point.

 

Karen Ortman  44:12

So did you get engaged in 2014?

 

Melissa DeAngelo DiStefano  44:16

Yes. I got engaged October of 2014. I always have to think about that date, but yeah.

 

Karen Ortman  44:24

And that was two years after diagnosis?

 

Melissa DeAngelo DiStefano  44:26

Yeah. I got engaged. The ice bucket challenge was huge at that point, and the fire department had organized it with the Ewing police. I never told Andrew that I wanted my parents there, I thought he knew, but I never said anything. They're doing the ice bucket challenge for dad, and then Andrew proposes, so it was a really meaningful event. That my dad, again it was something my dad got to participate in. There are these things that we thought wouldn't happen within there, and thankfully he was there. So, I think that was the biggest thing.

 

Karen Ortman  45:14

You get engaged in October of 2014. When did you get married?

 

Melissa DeAngelo DiStefano  45:23

I got married June of 2015, so pretty quick, like 8/9 months.

 

Karen Ortman  45:33

Was that stressful planning a wedding that quickly?

 

Melissa DeAngelo DiStefano  45:37

I'm probably the opposite of everyone else. My mom and I are very alike and very different in some ways. She said growing up, that she always cringed for when I got engaged, because she thought it would be like world war three. We loved every part of it. I think, because of what dad was going through, we tried to make this the sweet part of the bitterness. I really think that it changed how we looked at things like this now, because everything was just happy. It was a bit like, okay, we're going to get a dress, this is happy. Okay, we're gonna find where to get married, this is happy. Even when my mom and I speak about it now we say just what a happy time we felt like it was. My dad got to come, I think, to my first dress fitting, I took him.

 

Karen Ortman  46:35

 Oh, nice. 

 

Melissa DeAngelo DiStefano  46:35

So...

 

Karen Ortman  46:36

So he was really part of it.

 

Melissa DeAngelo DiStefano  46:38

Yeah, he was part of everything. Like I said, I don't know if it was wearing on him at that point. I felt like he was starting to decline a little bit then, but he was a part of things that I think are huge, obviously monumental in a girl's life, the things that I thought ALS would take from us. It was different, obviously, like we had to have his nurse with us and things like that, but he was there. I didn't care about the other crap, cuz she was there.

 

Karen Ortman  47:11

He had a full time nurse at this point.

 

Melissa DeAngelo DiStefano  47:14

Yeah, he was really, really lucky. He had gone through many, many nurses, but he had like a core four. His one nurse, Nancy, is actually in our wedding photos because she literally became part of our family. Nancy was part of every event that dad was at, it was because Nancy was there. 

 

Karen Ortman  47:36

Oh nice. Tell me about your wedding day.

 

Melissa DeAngelo DiStefano  47:43

It was the bes, I keep saying corny, but it was the best. It was rainy and hot. The weather was horrible, but I didn't even care.  I am a control freak to no extent, but I just woke up that day and I was just happy. I got ready at my parents’ house.  dad?

Karen Ortman  48:04

How was your dad?

 

Melissa DeAngelo DiStefano  48:07

He was quiet that day. He was he just, he was watching. I really think he was just taking it all it. He was just looking at everything and it was perfect. We had rehearsed two nights before, and my brother was supposed to walk me down the aisle, because we knew it was going to be too much for my dad. My dad at this point was using the scooter. We said alright, dad, you'll scoot me to the back of the pews, and then Chris will walk me the whole way. We rehearsed this and everything like that. Typical of my dad, he just does his own thing. Chris and I are in the back of church with my dad. They open the doors...

 

Karen Ortman  48:53

This is the wedding day?

 

Melissa DeAngelo DiStefano  48:54

Yes, this is the wedding day. So, my dad is with me, and again, Chris was supposed to come from the side and grab me. We're walking, getting to the back of the pew, and my dad isn't stopping. He just goes! I'm just like, he had no intention of letting your brother walking down the aisle! When I tell you, we practiced this, because we were like alright dad it's gonna be too much, it's fine. People were watching Chris on the side and he just didn't know what to do cuz he's just like, what am I doing? He took me down the whole aisle. He ran over my dress with a scooter at one point, there's a photo of him running it over, anyway he got me up to Andrew and it's the photos that the photographer got at those moments, I think, are like my favorite photos in the world, because it's my dad and Andrew, and it's just like, it's the best. Its the best feeling, because I think it's something, I'm sure he had in his head. He was always gonna walk me down the aisle. And he did.

 

Karen Ortman  49:59

He just didn't tell you. 

 

Melissa DeAngelo DiStefano  50:00

Nooooo....

 

Karen Ortman  50:03

How were you emotionally?

 

Melissa DeAngelo DiStefano  50:07

That day was hard, as much as I say it was the best day because he was there, it was hard. When I think about my wedding day, it sounds very weird, but you could feel how much love everyone had for him. When you looked at everyone, you could just, I think they were just showing in awe that he was there. I always say it was Andrew, me and my dad's wedding day, because he was just so much a part of it.

Karen Ortman  50:37

I think that's also part of it. Yeah.

 

Melissa DeAngelo DiStefano  50:41

I think everything about it was emotional.  I just remember looking at Andrew and I said, I can't believe that he can be here. He was like, just focus on, I think I was so wrapped up in, like, I can't believe he's here, but he is, so...

 

Karen Ortman  50:59

So let's enjoy it.

 

Melissa DeAngelo DiStefano  51:06

There were things that obviously we couldn't do, like, physically walking, but he got me down the aisle. We had said for the dance that I would just walk over to him at the table and just stand with him because at this point, even standing was extremely, extremely difficult for him, the up and down. It would take him 15 minutes to recover, so that was a lot. We got to the reception and I wanted Andrew and his mom to dance first, because I felt like that was a true dance, and let them get the real dance. Then my dad and I, our song comes on and I'm going over, and he's looking at me, and now we're going out on the dance floor.  I was like, okay!

 

Karen Ortman  52:01

Surprise!

 

Melissa DeAngelo DiStefano  52:04

I think back, and I'm just like, what the hell was going on? He just had all these things that he was so adamant about that he was going to do, and he stood for a good portion of it. I was just the most, I don't think there was a dry eye.

 

Karen Ortman  52:21

I'm sure not, yeah.

 

Melissa DeAngelo DiStefano  52:22

When I need a good cry, it's the video. 

 

Karen Ortman  52:27

What song did you dance to?

 

Melissa DeAngelo DiStefano  52:29

Tim McGraw, my little girl. When you listen to the song, to me it embodies my dad and I to a tee. It was just the most special. I say every part of that day was special. I feel like that was a gift that he gave me. He gave me the whole wedding. That part was just something, again, that I didn't think he would be there for. A memory that I have forever.

Karen Ortman  53:00

A gift that you gave him as well.  

 

Melissa DeAngelo DiStefano  53:06

It is. 

 

Karen Ortman  53:07

This was June of 2016.

 

Melissa DeAngelo DiStefano  53:13

This was June of 2015

 

Karen Ortman  53:16

2015? That you got married. 

 

Melissa DeAngelo DiStefano  53:20

Yep.

 

Karen Ortman  53:21

Tell me about the following year.

 

Melissa DeAngelo DiStefano  53:28

Up until August, things were starting to progress to the point that, physically, he really couldn't do anything by himself. You'd have to lift him. He had the kitchen island, the end stool was his spot. He ate dinner there. He ate breakfast there. He did everything there. When I say ate, we blended it in the NutriBullet and he ate it, and his coffee, he had to have his coffee. 

 

Karen Ortman  54:02

He had that in his NutriBullet?

 

Melissa DeAngelo DiStefano  54:03

Yep.

 

Karen Ortman  54:04

Okay. 

 

Melissa DeAngelo DiStefano  54:05

We had every type of meat, like steak, we had Rossi's burgers. So, life was normal, at least for his belly, but he would need help with every aspect. So, I mean, as things progressed, I helped bath him. Andrew and Chris would help lift him. My husband is 6'4", and my dad was 5'5"/5'6". My husband lifting my dad was, my mom said it was like lifting a doll, she said it looks like the easiest thing in the world. She would just see him plop him. He just needed help with everything. He couldn't wipe himself. To see the deterioration of someone who was so strong, both mentally and physically, and to see them truly at their worst, um, I know that that was killing him.

Karen Ortman  55:11

Because mentally he was there.

 

Melissa DeAngelo DiStefano  55:13

Yeah, at this point was, I would say total care. My mom kind of, she was his caregiver, but she I think once nursing left, really became his caregiver, so I would try to spend as much time as I could there.

 

Karen Ortman  55:33

Did he ever communicate concerns about dying?

 

Melissa DeAngelo DiStefano  55:39

As it progressed he never wrote that he was scared. His biggest thing, I remember, he said in the beginning, is what he says towards the end. He just said, I don't want to leave you.

 

Karen Ortman  55:57

When did you know the end was near?

 

Melissa DeAngelo DiStefano  56:00

That summer. So the summer of 2016. So palliative care is different than hospice. At this point I was learning a lot. It's not end of life, it's more pain control and making you comfortable and hospice is usually six months or less. We finally got him to allow hospice to come in because it actually opened up doors with an aide along with a nurse, he truly needed two people to move him. Previously to this, he had the trache, but he didn't need to be connected to the ventilator all the time, only at night. That last year is really when things started to progress, and that spring of 2016 is when he went on the ventilator permanently. He had to have the ventilator. I told you much mobility issues were bad, and before, he had that dexterity in his hand so he could text and things like that, that was starting to go. So...

 

Karen Ortman  57:15

Now it’s a quality of life issue.

 

Melissa DeAngelo DiStefano  57:17

There was no indication which was so hard. I will tell you, he could tell you what he wanted with those eyes, so you knew good or bad. It was about quality of life. Some people, I think with this, you see Steve Gleason and other people that have been able to use the computer and things like that, but his neck muscles were so atrophied that to get him to stare at a computer to even type one word, it just tried him on it. I believe they tried it at the clinic and it just it wouldn't work. I think it would be more harm for him to try that then good. Towards the end, he had this app, the text talk and I would go on the keyboard and I would go letter by letter, and he would nod yes or no. That's how we would spell for him, it was it was tedious for him to sa,y like, I have to go to the bathroom or...

 

Karen Ortman  58:22

At some point did he communicate to you that he was ready to go?

Melissa DeAngelo DiStefano  58:27

Yes, we had a like a family meeting in July, probably the end of July, with the hospice team who were phenomenal. He literally chose the day that he wanted to die. 

 

Karen Ortman  58:44

Did he really? 

 

Melissa DeAngelo DiStefano  58:45

He did. I don't think most people know that. He picked a Friday at picked 2pm, I guess he wanted to have like an early cocktail hour, maybe that's why he chose 2 pm? Two days before is when he decided, and my mom had to scramble and text people and say like, hi, Ed is choosing this day if you want to come. I remember him saying before then, I'm done, like, I am done.

 

Karen Ortman  59:21

How did your mom feel about that? 

 

Melissa DeAngelo DiStefano  59:25

I think relieved. I think she like felt, (crying) I'm really sorry. I think she felt relief that he had finally accepted it. I think he had always had some point of acceptance, but this, to me, was final.

 

Karen Ortman  59:32

It's okay. Yeah. Because who gets to choose what the day that they die? Who gets to be literally in control of a disease that he hasn't been able to control and he's, you know, able to control it. Take me to August 19, 2016. How was that day started for you? 

 

Melissa DeAngelo DiStefano  1:00:15

I at this point, once I knew that this was going to happen, I moved in - not moved in, but I stayed at my parents’ house that whole week. As a bit of backstory, in April, as things started to progress, I adopted this little Pitbull from Tennessee. It's funny because my dad always said, you know, don't get a pit bull, that bad rap and blah, blah. This pit bull, changed my dad's world. It was him and my dad. Dawkins and my dad became literally the best of friends. So, Dawkins and I moved into my parents, Andrew would stop over, but I was home. It was the best thing for my dad, because it was just this happy little boy, happy little dog that he had. He just knew when to give my dad love and everything like that. So, like a normal day with my dad would be; he literally woke up that day as if it was his normal day, he had a whole routine. Usually, my mom or the nurse would bring him up his coffee that he could have through a feeding tube, he would take a shower, and then he would come downstairs. So he did all of that.

 

Karen Ortman  1:01:35

And any conversation about what was happening at two o'clock?

 

Melissa DeAngelo DiStefano  1:01:37

No, he had a smile on his face and we were just all talking like it was a normal day. Everyone started to come over and it was probably like, 11 or noon. People would come in the kitchen, there’s about 30 people at this point. I's his best friends, a couple of my mom's family, you know, just a good amount of people. We're sitting in the kitchen, and we're all, he's at his spot at the kitchen island, and at this point, I told you his dexterity in his hands was practically gone so he really could not type. I don't know how he did this, but he typed on his phone and we were just amazed, because he could not do this previously. He typed, dry run go home. Everyone looked at each other, like, what is he talking about? And he just started laughing? Like, he's just like, what are you looking at me for? Like, go home, we’re not doing anything, go home. A little while goes by and everyone's laughing and talking with him, and he writes, no gifts, question mark, cheap bastards. Like she just was literally...

 

Karen Ortman  1:02:13

The jokester. 

 

Melissa DeAngelo DiStefano  1:02:34

...telling jokes until the day are you until - so this is like noon, and we're all laughing and everything like that. So it's getting close to 2 o'clock and Nancy, dad's nurse that is a part of everything, he wanted her there and she said, okay, it's getting close to 2 o'clock, and he's like, okay. I think Andrew put him in a wheelchair and wheeled him over into the room or something, but he goes into the family room and he's got a bed there, it was the weirdest thing. Everyone came in and said their goodbyes to him. Like everyone had time, everyone just walked in. After that, in the room is my mom, my brother, my husband, the hospice nurse, the hospice doctor, Nancy, and then two of his best friends from high school. These are two women that he had lost contact with, and when ALS came into the picture, they reunited. It was just meant to be. So he's in the room and they give him some Ativan, and some things to relax him, and it was the most peaceful, like when I think of death, I had never obviously experienced it until this point, but it was the most peaceful, beautiful thing I think I’ve ever witnessed in my life.

 

Karen Ortman  1:04:45

He lived with ALS for four years. 

 

Melissa DeAngelo DiStefano  1:04:50

Yep just about.

 

Karen Ortman  1:04:52

You are now a nurse. 

 

Melissa DeAngelo DiStefano  1:04:54

Yes. 

 

Karen Ortman  1:04:56

You have a immersed yourself in fighting for ALS as a cause in terms of research, raising money. Have you seen any advancements in ALS research since your father's diagnosis? His death?

 

Melissa DeAngelo DiStefano  1:05:22

Yes. I know they have two medications now. When he was diagnosed, they only had one. They have many, many more trials. There's a lot, I think, of movement now that there wasn't before, I think before it was kind of just on a wall, like people knew it was a disease and that it's horrible, but I hate to say this, and I felt like I was one of those people, but until it affects you it's not on your radar. I mean, it is, but it's not.

 

Karen Ortman  1:05:53

It seems like you're hearing a lot more about it these days. People being diagnosed with ALS, and younger people.

 

Melissa DeAngelo DiStefano  1:06:02

Yes. My mom and I were talking about that a couple months ago, just about the sheer number. I don't know if it's, again, we're more in tune to hearing about it, but I also wonder if they're just getting better at recognizing what it is quicker than previously.

 

Karen Ortman  1:06:28

What were the resources available to you and your family immediately after diagnosis, and throughout this four-year period?

 

Melissa DeAngelo DiStefano  1:06:39

My mom and I quickly joined a support group. That was huge, especially in the beginning, I think because in the beginning you are so naive, well, not naive, but...

 

Karen Ortman  1:06:49

Uninformed. You don't know. 

 

Melissa DeAngelo DiStefano  1:06:50

Yeah, I think you're ignorant to the disease, because one, you don't know what it's going to look like, and two, since this disease is so individual, everyone who goes through it is so different. A lot of people have more loss of their limbs, where with dad it was his voice.

 

Karen Ortman  1:07:09

What's the name of the support group in case there are listeners who might be interested?

 

Melissa DeAngelo DiStefano  1:07:14

We were associated with the ALS Association of Philadelphia. That was who Penn was affiliated with. We went with who dad's doctors were with. There were social workers involved that also ran this support group. It met once a month, so you weren't tied down if you didn't want to go. Sometimes there would be a couple months where mom and I are just like, we don't want to go and talk about. I think you go through these phases where like, sometimes it's all you want to talk about, and then sometimes it's too much. Maybe we had bad weeks or something, and we just we didn't want to talk about it. No one around us, thank God, had experience with ALS and we, you know, wanted to kind of be around people that got it. It's like a club you don't want to belong to but now you belong to it.

 

Karen Ortman  1:08:13

And now you want to be understood. 

 

Melissa DeAngelo DiStefano  1:08:14

Yeah. 

 

Karen Ortman  1:08:16

What do you want listeners to understand about ALS that only one who lived it could possibly know? 

 

Melissa DeAngelo DiStefano  1:08:23

Oh, yeah, that's a good one. As horrible as it sounds, just how devastating it is. I think it's one thing to hear - oh, this disease will kill you - like, okay, we're all gonna die, that's inevitable, but it's different to see the destruction that it does to someone's body, literally from top to bottom. It truly turned my dad into a shell of what he was. 

 

Karen Ortman  1:08:58

That's hard.

 

Melissa DeAngelo DiStefano  1:08:59

I think it was hard for people to look at him and see that. That's also what I think was hard for the guys at work, like, okay, I'm used to this big guy and now he is literally, he looks like a 90-year-old man. It took everything from him. I wish people could really look at it like that, and see him from before to now, and see that this disease needs attention.

 

Karen Ortman  1:09:21

Let them research. What is the meaning behind "Steady Eddie".

 

Melissa DeAngelo DiStefano  1:09:36

So, when my mom and dad first started going out, my dad picks my mom up for their first date, after playing softball and he was as red as a lobster. My mom must have told her sisters that she was going out with this guy named Ed, so then they said that Suzy is going steady with Eddie, and it just stuck. I don't know how but it did. So, that's what my mom's family just called him Steady, well, my uncles would call him Eddie, but so, when we were thinking about things for the walk, I wanted to think of a team.  I was asking my cousins, and they're like what about Steady Eddie Squad?  I was like, oh my God, that's perfect!

 

Karen Ortman  1:10:24

So then the walk you're talking about is the walk for ALS where you raised money?

 

Melissa DeAngelo DiStefano  1:10:29

Yeah. We did that every year from that first year he was diagnosed, so literally that spring of 2013, until a year or two after he passed. Every year over 100 people would show up in Lakewood, New Jersey. Then, we ended up moving the walk to our house as things progressed, because it was easier for dad. It was just became this huge party, we would walk and then we would just have everyone there. It was a huge, and as morbid as it sounds, it was like your funeral after party, but he got to see that every year. He got to see how much people loved him every single year, because they would show up, and they did it because of how great he was.  I kept saying, people want to help, this is their way of helping. They want to show you how much you're loved.

 

Karen Ortman  1:11:31

Oh, yeah. When you think about your dad in life, what makes you smile? 

 

Melissa DeAngelo DiStefano  1:11:38

His sense of humor. 

 

Karen Ortman  1:11:40

How's your brother?

 

Melissa DeAngelo DiStefano  1:11:42

He is my dad's spitting image. 

 

Karen Ortman  1:11:46

So, he's doing well?

 

Melissa DeAngelo DiStefano  1:11:47

He's doing well. He works in police department as a patrolman where dad started.

 

Karen Ortman  1:11:54

Following in dad's footsteps.

 

Melissa DeAngelo DiStefano  1:11:55

Literally. My mom is living at home, but she's very happy with her independence.

 

Karen Ortman  1:12:04

Good for her. 

 

Melissa DeAngelo DiStefano  1:12:05

So everyone is...

 

Karen Ortman  1:12:06

Doing well. 

 

Melissa DeAngelo DiStefano  1:12:06

...I think he would be proud of how everyone has handled this and moved forward.

 

Karen Ortman  1:12:14

I think he would be too. Thank you so much for coming to talk to me on You Matter. You have an important story to tell and everyone needs to know that ALS exists, whether it impacts them or not. Hopefully, in short order, we will see some positive research and remedies associated with this awful disease. So, thank you for, for coming and talking to me today. I appreciate it. 

Melissa DeAngelo DiStefano  1:12:48

Thank you for having me. 

 

Karen Ortman  1:12:50

So thank you again to my guest, again, Melissa, and to all of our listeners for joining us for today's episode of You Matter if any information presented was triggering or disturbing, please feel free to contact the Wellness Exchange at 212-443-9999 or NYU's Department of Campus Safety and their Victim Services Unit at 212-998-2222. Please share, like, and subscribe to You Matter on Apple Podcasts, Google Play, Tune in or Spotify.