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Turning a Diagnosis Into a Movement: Nancy Davis and Race to Erase MS · Inside The Moms Club

0:03
Speaker 1: Welcome to Inside the Mom's Club. I'm your host, Monica Samuels,
0:07
Speaker 1: and I'm here with my lovely co host, Julie Orchid.
0:10
Speaker 2: Hello, Happy twenty twenty second.
0:13
Speaker 1: No, I can't believe we're alling in a brand new
0:16
Speaker 1: year and it's exciting.
0:18
Speaker 2: It's thrilling that we are keep going and where.
0:22
Speaker 3: Yes, yes, there's.
0:23
Speaker 1: A lot of great things happening with Inside the Mom's
0:25
Speaker 1: Club and we're so excited about it.
0:27
Speaker 2: I'm really excited about today's show.
0:29
Speaker 1: I am too. But before we get to that, I
0:31
Speaker 1: have to share something with you. So, okay, tell me
0:33
Speaker 1: about how this happen before. But I have a mom crush.
0:37
Speaker 1: Do you know what a mom crushes?
0:38
Speaker 2: I do, be a cougar or anything.
0:41
Speaker 1: It's not that kind of cool, It's not.
0:42
Speaker 2: That kind of crush.
0:44
Speaker 1: I have a crush. I love this kid. Who I mean,
0:48
Speaker 1: I love My kids are perfect and wonderful too, so
0:51
Speaker 1: this would not be like, oh, I would love to
0:53
Speaker 1: replace my kids.
0:54
Speaker 3: With this kid.
0:54
Speaker 1: But if only I could have one, if I could
0:56
Speaker 1: have one more child, I would have Fernando Mendoza.
1:02
Speaker 2: I feel like you're going to break out in song,
1:04
Speaker 2: but yeah.
1:05
Speaker 1: I've been singing that all day yesterday, all the way
1:08
Speaker 1: every how I drove all the way over. He was like,
1:10
Speaker 1: it was happened in the air to me.
1:12
Speaker 2: Yeah, whatever, I mean, he is an absolute doll. I
1:15
Speaker 2: don't have a son, so it is thrilling to watch
1:18
Speaker 2: what's been happening with him.
1:19
Speaker 1: Okay, well he's okay, he's good looking, he's athletic, obviously,
1:25
Speaker 1: he's brilliant. But more importantly than anything else, he adores
1:31
Speaker 1: and loves his mother. Did everyone hear that Heisman speech
1:35
Speaker 1: he made?
1:36
Speaker 2: I mean, I hear it because it's on repeat in
1:38
Speaker 2: your car when we're Yeah, it's really good.
1:41
Speaker 1: It's really very inspirational.
1:43
Speaker 4: It.
1:43
Speaker 1: When he was doing that, I thought, I took my son,
1:46
Speaker 1: who's perfect, by the way, great kid, but I took
1:49
Speaker 1: him from the time he was five, his early years
1:52
Speaker 1: of baseball.
1:54
Speaker 2: I did everything. Yes, supporter, you are You and his
1:58
Speaker 2: mother are one and the same as far as when
2:00
Speaker 2: it comes to you know what I mean, supporting your
2:02
Speaker 2: kid and biggest dreams. And like I said, this trophy
2:06
Speaker 2: is as much mine as it is yours. And that's
2:10
Speaker 2: a huge compliment.
2:12
Speaker 3: Yeah.
2:12
Speaker 1: Yeah, he credited her with everything.
2:15
Speaker 2: Yeah, so what a good, good, good.
2:18
Speaker 1: Fernando, we love you.
2:20
Speaker 4: What a game.
2:21
Speaker 1: If you need to be adopted for some strange reason,
2:24
Speaker 1: call me.
2:25
Speaker 2: I think he's good, Monica, I think he's good.
2:28
Speaker 1: But anyway, I'm a little worried about him getting drafted
2:30
Speaker 1: though by Las Vegas Raiders. Don't you think that's a
2:34
Speaker 1: bad Maybe he can bring some light into an.
2:37
Speaker 2: I can talk college ball all day. Pro football, you're
2:40
Speaker 2: gonna have to teach.
2:41
Speaker 1: You're gonna have to, Okay, Yeah, Well, one thing that
2:43
Speaker 1: we learned, I mean by watching the Heisman and the
2:47
Speaker 1: game and everything, is his mom has multiple sclerosis.
2:52
Speaker 2: Well, I think a lot of people notice that she
2:54
Speaker 2: is in a wheelchair, and so they obviously naturally start
3:00
Speaker 2: asking questions what's going on? So we have learned a lot.
3:05
Speaker 2: I happen to know a lot about MS, but the
3:09
Speaker 2: world has learned a lot about it.
3:10
Speaker 3: Yeah.
3:11
Speaker 2: Well, now, and you know, I know because I do
3:14
Speaker 2: have multiple sclerosis. I was diagnosed in May twenty seventeen,
3:18
Speaker 2: and I've done really well. I'm an amazing team of doctors,
3:23
Speaker 2: and I'm super fortunate to be on the better side
3:28
Speaker 2: of MS.
3:29
Speaker 1: When you've done so well that if you had not
3:32
Speaker 1: told me you had it, I wouldn't know.
3:33
Speaker 2: I don't know that A lot of people know they
3:35
Speaker 2: now so well, yeah, no, it's it's like changing. It's
3:40
Speaker 2: definitely something and I think this goes for any diagnosis
3:43
Speaker 2: that you have, but really a diagnosis my kids were.
3:47
Speaker 2: You know, this started a little bit before I was
3:49
Speaker 2: completely diagnosed. I started with an als doctor, and I
3:53
Speaker 2: think it takes a lot of times. It's the kind
3:55
Speaker 2: of disease that doesn't isn't doesn't present right away and
3:59
Speaker 2: tells you exactly what you have. So you go through
4:03
Speaker 2: all you know your symptoms and what happened. So it
4:07
Speaker 2: is definitely something that you have to like chip away
4:11
Speaker 2: at and you wonder if am I gonna walk? Am
4:14
Speaker 2: I not gonna walk?
4:15
Speaker 1: I've learned a lot about it through you. Yeah, but
4:18
Speaker 1: I've also learned a lot about it by going with
4:21
Speaker 1: you to the Race to Erase MS gala in Los Angeles.
4:24
Speaker 1: It was incredible, which was incredible, and we are excited
4:28
Speaker 1: to have with us today to learn more about MS
4:31
Speaker 1: and what we can do to help with our guests today.
4:33
Speaker 1: Who is a dedicated philanthropist, jewelry and clothing designer, and author.
4:38
Speaker 1: At the age of thirty three, she was diagnosed with MS,
4:42
Speaker 1: and rather than accept her doctor's prognosis that she would
4:45
Speaker 1: never even be able to operate a TV remote control someday,
4:49
Speaker 1: she tackled MS head on, founding the Race to Erase MS,
4:52
Speaker 1: an organization which is dedicated to funding research through its
4:55
Speaker 1: Center Without Walls, and to date they have raised over
4:59
Speaker 1: fifty six dollars. She's the proud mother of five children,
5:03
Speaker 1: including a daughter who I'd love to introduce to my son.
5:06
Speaker 1: Please welcome, Nancy Davis. Welcome to the Mom's Club.
5:10
Speaker 4: I'm so excited to be here. Thank you so much
5:12
Speaker 4: for having me.
5:13
Speaker 1: Thank you for joining us. So tell us a little
5:16
Speaker 1: bit about your journey with MS. How how were you diagnosed?
5:21
Speaker 1: I know you were thirty three years old and you
5:23
Speaker 1: were at the time a mother of three children, But
5:25
Speaker 1: tell us a little bit about how you learned that
5:28
Speaker 1: you had MS.
5:29
Speaker 4: I had a ski accident, and about three weeks later
5:31
Speaker 4: I woke up and started losing the feeling in various
5:35
Speaker 4: different parts of my body. Every three days I would
5:36
Speaker 4: lose kind of another sensation. I first lost the feeling
5:39
Speaker 4: and the three fingertips on my right hand, three days
5:41
Speaker 4: later my whole hand, then three days later the three
5:44
Speaker 4: finger tips to my left hand. Then three days later
5:46
Speaker 4: we hold hand. Then my stomach loss feeling. Then I started,
5:49
Speaker 4: you know, having double vision, and it just every day
5:52
Speaker 4: there was something new, and I figured it had to
5:53
Speaker 4: do with my ski accident. I went to my doctor
5:56
Speaker 4: and I got diagnosed kind of quickly because most people
5:59
Speaker 4: take while, especially back then the MRI machines were not
6:03
Speaker 4: as sophisticated as they are today. It took like seven
6:06
Speaker 4: hours when I did it, it was it was a really
6:08
Speaker 4: long one. Today they can do the same thing in
6:10
Speaker 4: an hour, which is great. But I remember, you know,
6:13
Speaker 4: the doctor coming in the next day and I'm you know,
6:17
Speaker 4: pointing to all these these MRIs of me and showing,
6:21
Speaker 4: you know, look at your brain, look at your spinal column.
6:23
Speaker 4: I'm like, oh, this isn't good. This is not going
6:26
Speaker 4: to be a good outcome. And I was. I was terrified.
6:29
Speaker 4: And then he he said, okay, you have a disease
6:32
Speaker 4: called MS. You're very lucky. I'm like, I'm very lucky,
6:35
Speaker 4: because yeah, you're lucky you don't have a brain tumor.
6:37
Speaker 4: I'm like, okay, what I know that mass At the time,
6:40
Speaker 4: I didn't feel very lucky whatsoever. When I, you know,
6:44
Speaker 4: asked my doctor, Okay, so you know, what can I
6:47
Speaker 4: do for my MSS? And he said, just go home
6:49
Speaker 4: and go to bed. I said, you know, for how long?
6:51
Speaker 4: He goes yeah, just forever. I'm like, whoa, I'm thirty three,
6:55
Speaker 4: I'm a young mom with three kids. All that mattered
6:58
Speaker 4: to me is that I could continue to be a
6:59
Speaker 4: mom and take care of my children. And it was
7:02
Speaker 4: it was terrifying. I know, I'm incredibly lucky. I was
7:07
Speaker 4: able to go get second opinions and I got second, third,
7:10
Speaker 4: and fourth opinions, and along the way, I met some
7:13
Speaker 4: of the greatest doctors in our country. But I listened
7:16
Speaker 4: to the research that they were doing at the time,
7:18
Speaker 4: and they all sounded really hopeless that there would never
7:21
Speaker 4: be anything for MSS. They were working on the same
7:24
Speaker 4: identical studies at Harvard, at Eale, the Cleveland Clinic, at
7:27
Speaker 4: Johns Hopkins, and it was like every doctor's doing the
7:30
Speaker 4: same thing. So I was listening to that and thinking,
7:32
Speaker 4: you guys are all working in a vacuum and you're
7:34
Speaker 4: not communicating. But if we could ever find a cure
7:37
Speaker 4: for MS, it's going to take a big team of
7:39
Speaker 4: the greatest doctors around the country to collaborate, to talk
7:43
Speaker 4: to never duplicate research, but to constantly communicate on a
7:46
Speaker 4: monthly basis. So I'm back. You know, back in the day,
7:50
Speaker 4: it was very virtual before its time. We started the
7:53
Speaker 4: Center Without Walls, which was you know, seven of ourly
7:56
Speaker 4: the best MS doctors in our country that we're going
7:59
Speaker 4: to work as a team with that philosophy, never duplicate,
8:02
Speaker 4: constantly communicate. It made all the sense in the world
8:05
Speaker 4: to me. I was terrified. I kept looking at my
8:08
Speaker 4: babies and thinking, you know, I had them to be
8:13
Speaker 4: a parent, to guide them, to be there for them,
8:15
Speaker 4: not for them to you know, have to take care
8:18
Speaker 4: of me, to feel sorry for me or whatever. And
8:20
Speaker 4: so luckily we put this great team together. We had
8:26
Speaker 4: a lot of great ideas along the way. Some did work,
8:29
Speaker 4: some didn't work. But today, to look at theirs, there's
8:32
Speaker 4: going to be have to approval very soon on the
8:34
Speaker 4: twenty fifth drug for ms US. Really nothing short of
8:39
Speaker 4: a miracle. We can't take credit for all those, but
8:42
Speaker 4: about eighteen of those we did the pilot studies, which
8:44
Speaker 4: is what we do. We fund pilot studies with race
8:46
Speaker 4: to a race MS and we get it to a
8:49
Speaker 4: certain point and then the big road companies do come
8:52
Speaker 4: in and they put the big, big money and you know,
8:55
Speaker 4: get have to approve it. We take it to like
8:57
Speaker 4: a phase one or phase to study and if it's
9:00
Speaker 4: if it's gotten merit that you know, people are very
9:02
Speaker 4: interested in doing that, so very excited to know that
9:06
Speaker 4: today that person like me, a young a young mom
9:10
Speaker 4: being diagnosed has about a ninety ninety two percent chance
9:14
Speaker 4: of living a better quality of life and being independent.
9:19
Speaker 4: And with the drugs which we we did do the
9:22
Speaker 4: pilot studies for with doctor Howser at uc San Francisco
9:25
Speaker 4: that turned into Okuervs and Casinta. They're the game chambers
9:29
Speaker 4: for this disease. And the idea at the time is like,
9:33
Speaker 4: why why are your T cells attacking each other? What's
9:35
Speaker 4: a mechanism that makes that start? So we figured out
9:38
Speaker 4: when your B cells are elevated, that's when it starts.
9:42
Speaker 4: So if we could kind of kill your B cells,
9:44
Speaker 4: get rid of your B cells, you know, maybe we
9:45
Speaker 4: would come up with something great. At the time, everybody
9:48
Speaker 4: thought that was a horrible idea. I thought it was
9:52
Speaker 4: a great idea, and we worked together for a long
9:55
Speaker 4: time and out of that. First came okervis, which it
10:00
Speaker 4: kills your B cells. You have an ivy twice a year.
10:03
Speaker 4: Then kim Cassimpta, which is a different delivery system. Basically
10:06
Speaker 4: it also kills your B cells, but you have a shot.
10:09
Speaker 4: You get yourself a shot once a month, and it
10:11
Speaker 4: does kind of the same thing. And some people are
10:13
Speaker 4: better on one, some people are better on another one,
10:15
Speaker 4: depending on who you are.
10:17
Speaker 1: I'm curious in terms of the symptoms. So you had
10:20
Speaker 1: an injury, did that trigger something?
10:23
Speaker 3: What?
10:23
Speaker 1: Did you have any other symptoms. I'm always big on
10:27
Speaker 1: like finding out the symptoms of things. Of course I'm
10:30
Speaker 1: a hypochondriac, so then I think I have everything. So
10:33
Speaker 1: those of you out there like me who are hypochondriacs,
10:36
Speaker 1: don't take this to mean that this is you. But
10:39
Speaker 1: was there any clue you had that anything else happening?
10:43
Speaker 4: Are You probably get MSS somewhere between the ages of
10:46
Speaker 4: fifteen to twenty five, but it lays dormant in your body,
10:50
Speaker 4: and by having an accident, going through an illness, going
10:53
Speaker 4: through a traumatic time, one of those three things will
10:56
Speaker 4: kick off your MS. It's laying dormant in your body,
10:58
Speaker 4: so you probably don't know exactly what was constant in
11:01
Speaker 4: the environment. You got it when you got it. I
11:04
Speaker 4: have theories about it, and it's proved them. But I
11:07
Speaker 4: feel like I lived in Denver, Colorado. The incidence of
11:10
Speaker 4: MSS in Denver was ten times higher than it is
11:13
Speaker 4: in California right now live And that may be more susceptible,
11:16
Speaker 4: but there's something about the cold weather climates around the
11:19
Speaker 4: world above the fortieth parallel worldwide, the incidence about this
11:23
Speaker 4: is ten times higher, so iNeST in Norway and Sweden,
11:28
Speaker 4: New York, the great cold weather places have And then
11:30
Speaker 4: you say, you know, so what is about the environment.
11:33
Speaker 4: And I just remember being fifteen and going on a
11:37
Speaker 4: field trip to the Denver Botanical Gardens and they're you know,
11:42
Speaker 4: they keep those things up with like they put bubbles
11:45
Speaker 4: over tennis courts, pools, you know, all kinds of things.
11:47
Speaker 4: When you're in Denver, and there's this thing about you
11:51
Speaker 4: know what is making that stand up? When when the
11:53
Speaker 4: snow melts, when the ice melts, there's seems like there's
11:56
Speaker 4: these germs that get in the air that could actually
11:58
Speaker 4: turn into something like or something, and if people don't
12:01
Speaker 4: clean them properly or whatever, there's the change in temperature.
12:05
Speaker 4: I think it has something to do with it. But
12:07
Speaker 4: I somehow remember that when I left the Denver Potelical
12:10
Speaker 4: Gardens back then, I ended up getting the worst flu
12:13
Speaker 4: I'd ever had in my life. I ended up in
12:14
Speaker 4: the hospital. It's like the Hong Kong flu at the time.
12:17
Speaker 4: And I guess somehow I feel like, you know, that
12:20
Speaker 4: was around that age, and I never felt so sick
12:22
Speaker 4: of my whole life. I feel like I can't breathe.
12:24
Speaker 4: I don't know, you know for sure, It's hard to
12:25
Speaker 4: prove it, but I went to a very small high
12:28
Speaker 4: school in Dent with like one hundred am kids graduating,
12:31
Speaker 4: and five other people have that mess.
12:33
Speaker 2: You brought up a really good point, Nancy. So my
12:36
Speaker 2: aunt had MS, and there's different types of MS. She
12:38
Speaker 2: had primary progressive. I happened to have relapse remitting. And
12:42
Speaker 2: it's interesting we don't really know is it genetic? Is
12:47
Speaker 2: it stress? Is it There's a lot of things that
12:51
Speaker 2: what's weird about this disease is that we just really
12:53
Speaker 2: don't know. I too, your story is very similar. I
12:57
Speaker 2: had a traumatic fall and then things started rolling from
13:02
Speaker 2: there and same symptoms, you know, the vision, the neuropathy,
13:08
Speaker 2: which is all the tingling in your hands and your
13:11
Speaker 2: feet and everything is the main one and balance. So
13:16
Speaker 2: it was it was everything that you're saying. I'm nodding
13:19
Speaker 2: my head, going, yes, that happened to me. It's not
13:21
Speaker 2: the same for everyone. But what are the thoughts on
13:24
Speaker 2: some of the research that you have gone, you know,
13:28
Speaker 2: with all the board of doctors and everything that you've
13:30
Speaker 2: been on, what are they saying about the cause of it?
13:33
Speaker 4: When I when I went through it, I was on
13:35
Speaker 4: the verge of getting divorced and I did have my
13:39
Speaker 4: husband reacted at the time to my being diagnosed. It
13:42
Speaker 4: became very apparent that that level of stress that was
13:46
Speaker 4: being caused from my marriage was going to hurt my ms.
13:50
Speaker 4: And a book I was reading at the time, there
13:52
Speaker 4: was no drug all on the market and very little
13:55
Speaker 4: hope that there ever would be, and I was reading
13:56
Speaker 4: all these books and different things that you basically had
13:59
Speaker 4: to check out of the line. It was very hard
14:00
Speaker 4: to get the information then when I was first diagnosed,
14:03
Speaker 4: so it was actually thirty four years ago, and so
14:07
Speaker 4: by getting all this information, I think everybody was sort
14:10
Speaker 4: of guessing. There was a lot of guests going on
14:13
Speaker 4: as my symptoms back then are a little different than
14:16
Speaker 4: they are today. In the beginning, it was always numbing
14:19
Speaker 4: and losing my eyesight. And there's something I have that
14:22
Speaker 4: made it a definitive diagnosis that I'd had it for
14:25
Speaker 4: many years before I was ever diagnosed, called their meats syndrome.
14:29
Speaker 4: Whenever you put your head forward, you'll go a numb
14:32
Speaker 4: from your waist down and you put your head back up,
14:34
Speaker 4: and it's normal. It doesn't hurt, it's not painful, but
14:37
Speaker 4: it's kind of a bizarre sensation. And so I told
14:40
Speaker 4: the doctor when I went to get a second opinion
14:42
Speaker 4: about that, he goes, oh my god, everybody with our
14:45
Speaker 4: meat syndrome has MSS, but not what everybody with MSS
14:48
Speaker 4: has lure meat syndrome. And I'm like, okay, so how
14:50
Speaker 4: did these doctors and they remember telling a doctor that
14:53
Speaker 4: I'd had that feeling. They kind of looked at me like, Eh,
14:55
Speaker 4: she's complaining, she's crazy, she's but whatever. But it's a
14:58
Speaker 4: very definitive sign and but not why everyone went to
15:01
Speaker 4: MS will have it, but I did, and to this day,
15:04
Speaker 4: you know, I do have it off and on. It's
15:06
Speaker 4: it's not painful, but it's very indicative of MSS I had.
15:10
Speaker 4: I just started losing all the feeling everywhere, and it
15:14
Speaker 4: just just became very bizarre. And then I'm like, you know,
15:16
Speaker 4: how far is this going to go? My you know
15:18
Speaker 4: is you know, every ability I have him like buys
15:20
Speaker 4: is going to keep happening. And at the time, they
15:23
Speaker 4: said you could take steroids, but my little sister was
15:28
Speaker 4: diabetic and there would be a good chance if I
15:30
Speaker 4: started taking steroids that I would become diabetic as well,
15:33
Speaker 4: And steroids don't make people feel very well actually, so
15:36
Speaker 4: I did not do that. I you know, back then,
15:38
Speaker 4: I went to a homeopathic doctor, which a lot of
15:41
Speaker 4: people actually do not believe in that I've learned that
15:44
Speaker 4: it's been incredibly helpful for my particular MSS. I'm not
15:47
Speaker 4: saying it's right for everybody, but when I did, it
15:50
Speaker 4: really helped me. To this day, when I have an
15:52
Speaker 4: MS attack, I go to the same, the same you
15:54
Speaker 4: know doctor. He's he's really quite amazing. He's holl me.
15:58
Speaker 4: He's a homopathic doctor. Now, I don't how many pathic
16:00
Speaker 4: doctors are created equal, by the way, so he went
16:04
Speaker 4: to college as long as a normal doctor goes plus
16:06
Speaker 4: four more years, and there's certain ones who are just
16:10
Speaker 4: incredibly qualified. But to this day, when I'm having attack,
16:13
Speaker 4: it's one of the things I do and I take
16:16
Speaker 4: his drops. He finds about your body's deficient in and
16:19
Speaker 4: it seems to help me within about four days, which
16:22
Speaker 4: is pretty amazing. And a lot of traditional doctors don't
16:26
Speaker 4: like pathic dnes but you have to do and you
16:29
Speaker 4: have to listen to your body and whatever works for
16:31
Speaker 4: you is what's right exactly.
16:33
Speaker 1: So most of the drugs that they've come up with
16:35
Speaker 1: since you were first diagnosed, I understand they help stop
16:39
Speaker 1: the progression. So if you're diagnosed earlier, they can give
16:43
Speaker 1: you these things and it will slow the progression.
16:45
Speaker 2: Is that correct?
16:46
Speaker 1: Or have we gotten to a place where we're closer
16:48
Speaker 1: to a cure?
16:49
Speaker 4: We just had of our doctors here and it was
16:52
Speaker 4: fascinating to listen that we were trying to identify what
16:55
Speaker 4: do you call a cure? If you can stop people
16:57
Speaker 4: from having attacks even though they have, they pretty much
17:01
Speaker 4: consider that a cure. So these drugs, you know, ok, Vissimpta,
17:05
Speaker 4: they are almost like a cure for people. They don't
17:08
Speaker 4: work on everybody. Some people, you know, have to have
17:11
Speaker 4: blood work done if they have a susceptibility of getting
17:13
Speaker 4: PML or something like that. They cannot take these drugs.
17:17
Speaker 4: Some people with primary progressive MS, they these medicines actually
17:22
Speaker 4: helped to a degree. But we are are still you know,
17:25
Speaker 4: we're still working as hard as we can, and we're
17:28
Speaker 4: having lots of events. We want to be able to
17:29
Speaker 4: help one hundred percent of every person who's got MS,
17:32
Speaker 4: and we need to come up with ways to remilinate.
17:35
Speaker 4: We don't yet know how to remilinate. So if you
17:38
Speaker 4: can stop for it starts, which is what these drugs do,
17:41
Speaker 4: it's it's amazing, and especially for some many newly diagnosed
17:44
Speaker 4: before you have all these attacks and all this demylination.
17:48
Speaker 4: The word multiple means money, the word sclerosis means scar.
17:51
Speaker 4: So there's many scars scarming on your brain and your
17:53
Speaker 4: spinal column. And the little bits that are eating in
17:55
Speaker 4: a way are called the milin sheets. It's kind of
17:58
Speaker 4: like a telephone court. Actually have one right here, and
18:02
Speaker 4: our spin is kind of like if my phone wouldn't
18:04
Speaker 4: work well if I had little bits of you know,
18:06
Speaker 4: things eating away, eating away on this court, and it's
18:09
Speaker 4: very much the same in our body. That's our milin sheet.
18:12
Speaker 4: That's this is covering the wires well our mild sheee
18:15
Speaker 4: covering the wires in our body. And then sometimes you
18:17
Speaker 4: might have pain or you might be able to send
18:20
Speaker 4: a message out correctly to your body. You have numbing,
18:23
Speaker 4: you have fatigue, it's I don't know, And this is
18:26
Speaker 4: you know, not ever one size fits all. People have
18:29
Speaker 4: different symptoms that occurring. As I get older, I don't
18:33
Speaker 4: have as much of the numbing as I do pain,
18:37
Speaker 4: and I prefer the numbing versus the pain. That I
18:41
Speaker 4: guess I don't really have the choice. That's itself.
18:45
Speaker 2: Nancy, You've mentioned a lot of the stuff about the
18:48
Speaker 2: symptoms and that everybody has something different. But there's a
18:51
Speaker 2: part of MS that a lot of people don't necessarily
18:53
Speaker 2: talk about, and that is the mental side of MS.
18:58
Speaker 2: A lot of people can really experience in a large
19:03
Speaker 2: bout of depression or if you don't have support any
19:07
Speaker 2: of that. You mentioned that you got a divorce and
19:09
Speaker 2: that you have other support. Now can you speak to
19:13
Speaker 2: a little bit about that. And I mean, because you've
19:15
Speaker 2: mentioned a homeopathic doctor and I feel personally for my
19:20
Speaker 2: own story that that is critical that you know you're
19:23
Speaker 2: able to really radically self care and the mental health
19:28
Speaker 2: part is a big part for me.
19:30
Speaker 4: But people don't always talk about is most most peoplet's
19:34
Speaker 4: at least ninety percent of people in they're first diagnosed
19:37
Speaker 4: by by having MS, it makes you depressed. One of
19:40
Speaker 4: the least causes of death with people with the MS
19:43
Speaker 4: is suicide. And we're one entradoor center without walls, and
19:47
Speaker 4: we really seeked at a hospital that would address this
19:50
Speaker 4: issue about depression. Some of the medicines make you depressed,
19:54
Speaker 4: but there are ways of dealing with it which are
19:57
Speaker 4: really important to get mental health and not you know,
19:59
Speaker 4: be shame to get it because it's it's a definitive
20:02
Speaker 4: part of getting MS. There's a wonderful doctor named goffor
20:06
Speaker 4: Adam Kaplan who has been part of our group forever,
20:09
Speaker 4: and he really deals with that and he perceives differently
20:13
Speaker 4: and he has a lot of really amazing tools. I
20:15
Speaker 4: think you can't look the other way because that's a
20:17
Speaker 4: really really important part of it. A lot of people also,
20:20
Speaker 4: because they're in such pain, they get addicted to other
20:23
Speaker 4: drugs and creates yet a whole nother problem, you know,
20:27
Speaker 4: with depression and taking drugs at the same time, it
20:30
Speaker 4: can really create a much bigger reaction in your body
20:34
Speaker 4: and make it very hard to get better. What is
20:37
Speaker 4: your exercise routine, like, what do you do what helps you?
20:41
Speaker 4: Lately I've had sciatica, which is not very comfortable.
20:43
Speaker 2: But that's not fun.
20:45
Speaker 4: Yeah, yeah, so I've been I haven't been as active
20:48
Speaker 4: as I'm going to physical therapy today. Gosh.
20:50
Speaker 3: Yeah.
20:51
Speaker 4: But I think walking is one of the best things
20:53
Speaker 4: that you can do no matter what. And I know
20:55
Speaker 4: a lot of people have their cell phone and you
20:58
Speaker 4: can put it under health and you can measure the
21:01
Speaker 4: amount of steps you take every day. And I found
21:04
Speaker 4: myself doing that a lot, and you kind of get
21:06
Speaker 4: competitive with yourself and you can you know, first you
21:08
Speaker 4: can do you know, three thousand steps, and you can
21:10
Speaker 4: do five thousand steps, then you can get up to
21:11
Speaker 4: ten thousand whatever is good for you and comfortable. And
21:14
Speaker 4: just sometimes when you can't get a whole workout in
21:17
Speaker 4: just the idea of you know, walking up and down
21:20
Speaker 4: the hallway, walking outside, just getting the steps, I think
21:23
Speaker 4: just it's so important to have the muscle memories. I
21:26
Speaker 4: do pilates too, and I ski, I do you know,
21:30
Speaker 4: different things. I used to be much better about my
21:34
Speaker 4: exercise routine, but in the last like two months, I've
21:38
Speaker 4: just had this sciatic and it's like that's painful.
21:40
Speaker 2: And so you're an incredible inspiration because what it does
21:44
Speaker 2: is that people know that now that you've had MS
21:46
Speaker 2: for many, many years, and they know that they can
21:49
Speaker 2: have a active, you know, normal life. So thank you
21:54
Speaker 2: for sharing your story.
21:56
Speaker 1: Well, I would say, so everything she's described and exercise
21:59
Speaker 1: I should aspire to do. And I totally think I'm well, carry.
22:03
Speaker 4: Your cell phone on you you can like look at
22:06
Speaker 4: it every day, like you can. You can kind of
22:07
Speaker 4: make a chart for yourself and see you how much
22:09
Speaker 4: to you walking? Is that comfortable? Is it uncomfortable? Just
22:12
Speaker 4: you know, like even in the morning, just like you know,
22:14
Speaker 4: even if you can't do a whole exercise routine, you
22:17
Speaker 4: can't you don't have a whole half hour, a whole hour,
22:19
Speaker 4: and to do ten minutes just walking is it's okay?
22:22
Speaker 4: And then you can do ten minutes later, you can
22:24
Speaker 4: do whenever it works for you, or even if it's
22:27
Speaker 4: five minutes. Just the idea that you are moving and
22:30
Speaker 4: you're keeping your muscle memory going, because that's one of
22:32
Speaker 4: the things that gets very confusing when you have a mass.
22:34
Speaker 2: It doesn't have to be cross fit.
22:36
Speaker 1: We yeah, well that's good good news for me. Well, Nancy,
22:40
Speaker 1: we have a group of moms who'd like to ask
22:42
Speaker 1: you some questions as well, and they are our Zuber
22:45
Speaker 1: mom So welcome Zoomer Moms. Welcome to the Mom's Club.
22:49
Speaker 3: Thankti. Welcome ladies.
22:52
Speaker 1: Well, I'm going to introduce you and I'd like you
22:55
Speaker 1: to tell us a little bit about yourself, where you're from,
22:58
Speaker 1: and if you have a question for Nancy. Welcome. De Dye,
23:02
Speaker 1: Welcome to the Mom's Club.
23:04
Speaker 3: Okay, I haven't one of My name is Dedee Stafford.
23:06
Speaker 3: I am a retired jail sergeant now real to here
23:10
Speaker 3: in the DFW Metroplex. My partner and I own and
23:14
Speaker 3: operate Keep On real Estate Solutions here and in Southeast Texas.
23:18
Speaker 3: I have a perfect six year old daughter, and I
23:23
Speaker 3: am I'm happy to be here. I'm ecstatic to be
23:25
Speaker 3: here because I do have a question, Nancy. So I
23:28
Speaker 3: have a close friend whose sister was recently diagnosed with MS.
23:33
Speaker 3: When I met her nine years ago, she was fine,
23:36
Speaker 3: but now she is a wheelchair bound. So I just
23:39
Speaker 3: wanted to know more so what advice you would give
23:43
Speaker 3: to her family and to the people that support her
23:47
Speaker 3: while they navigate this and that would also help them.
23:51
Speaker 4: Okay, So with MS and probably with a lot of
23:53
Speaker 4: other diseases. When one family member has a disease, everybody
23:57
Speaker 4: in the family has the disease because everybody is your
24:00
Speaker 4: support system and life changes around the person with them
24:03
Speaker 4: as depending on how well you're doing or not. It's
24:06
Speaker 4: very important to have those relationships and you know, not
24:09
Speaker 4: feel guilty even when you go to a doctor. It's
24:11
Speaker 4: really important to be a friend or a family member
24:14
Speaker 4: with you. Sometimes it's hard to get the doctor's appointment,
24:17
Speaker 4: and by the time you get there, you get like
24:18
Speaker 4: a little nervous and you you don't you don't know
24:20
Speaker 4: what to say. But it's good to have a list
24:22
Speaker 4: when you go to the doctor. But it's great to
24:23
Speaker 4: have somebody with you who hears it, because sometimes you
24:26
Speaker 4: don't hear the whole thing. And it's really important that
24:29
Speaker 4: your family also might ask questions on things they're seeing
24:32
Speaker 4: about you. So I think the best thing you could
24:34
Speaker 4: ever do is include your family. Don't ask act like
24:38
Speaker 4: you know, don't worry about it, don't work a out me.
24:41
Speaker 4: They need you and you need them.
24:43
Speaker 2: That's true.
24:43
Speaker 1: It's a great answer, and you know that's true for
24:45
Speaker 1: any illness. I know my mom had cancer and I
24:48
Speaker 1: went with her because she wasn't even really able to
24:51
Speaker 1: listen effectively because what she was feeling. So I was
24:54
Speaker 1: her advocate there, which I think is great. Cricket, welcome
24:57
Speaker 1: to the Mom's club. Tell us a little bit about
24:59
Speaker 1: yourself and you have a question for Nancy.
25:01
Speaker 5: My name is Cricket Wheeler. I live in Silver Strand,
25:04
Speaker 5: which is up in Ventura County, north of LA. I
25:07
Speaker 5: have three adult children, and I'm a semi retired TV
25:12
Speaker 5: producer and that I still produce a couple shows a year,
25:15
Speaker 5: live shows. But I also am a program director for
25:17
Speaker 5: a local charity, and so I'm really interested in the
25:20
Speaker 5: work you do with with your charity. My question is
25:26
Speaker 5: it's so complicated. Where do you really get the strength
25:30
Speaker 5: to stay motivated. You're such a good role model and
25:35
Speaker 5: you're trying to make a difference, you know, on the
25:37
Speaker 5: public stage, Like how do you get how do you
25:40
Speaker 5: stay motivated and maintain your peace of mind?
25:43
Speaker 4: That's a very good question. You know what I feel
25:47
Speaker 4: like when I started getting a mass, I part of
25:50
Speaker 4: me wanted to go hide me didn't deal with it
25:53
Speaker 4: parton didn't want to talk about with other people. Then
25:57
Speaker 4: I finally decided, I'm just going to tell absolutely everybody
26:00
Speaker 4: at a certain party that I have and I want to,
26:02
Speaker 4: you know, get over that so there's not that fear
26:04
Speaker 4: of telling people. And I don't know, it made me motivated.
26:10
Speaker 4: Everybody's been loving and supportive of me. We have an
26:13
Speaker 4: event every year, but we have several doctors conferences per year,
26:17
Speaker 4: and I feel that if my best work I can
26:21
Speaker 4: do is to help other people, and it feels good insight,
26:24
Speaker 4: you know, it makes you feel better about yourself. And
26:27
Speaker 4: I have my days when I'm exhausted and I'm like,
26:30
Speaker 4: oh my gosh, I have to do this, I have
26:31
Speaker 4: to do that, and it's a lot of work, but
26:35
Speaker 4: it's rewarding. When you see that you can change the
26:39
Speaker 4: quality of one person's life, it makes you feel so good.
26:43
Speaker 4: And that's what I strive to do. And the more
26:47
Speaker 4: we can help more people, you know, it empowers you
26:50
Speaker 4: to have more strikes, more energy. I also take really
26:53
Speaker 4: good care of myself. I take so many vitamins every day,
26:57
Speaker 4: I do exercise, I keep really positives as I can,
27:01
Speaker 4: and sometimes that's hard. For people. People are all going
27:03
Speaker 4: through different things, and I went through some different things
27:06
Speaker 4: in my life too, you know, getting divorced. I got remarried.
27:09
Speaker 4: The better part of the stories. I've been married to
27:11
Speaker 4: the greatest guy for the last thirty one years and
27:16
Speaker 4: life changed, and I you know, I knew I had
27:18
Speaker 4: to do things, but I have a support system around me.
27:22
Speaker 4: Of him. My ex husband would never have been supportive.
27:25
Speaker 4: In fact, he made me sad, depressed and unenergetic. But
27:29
Speaker 4: I feel better that, you know, I put myself in
27:31
Speaker 4: an environment. I think everybody owes it to themselves to
27:34
Speaker 4: create the best environment that's conducive to your feeling better.
27:38
Speaker 5: Well, congratulations, Yeah, it's really a great great role model.
27:42
Speaker 1: What I love about you is that you don't you
27:45
Speaker 1: were very proactive, like you're going to tackle something and
27:49
Speaker 1: solve it. If you see a problem, you actually you
27:53
Speaker 1: take the lead and get in there and let's find
27:55
Speaker 1: a solution, which is a great way to handle something
27:58
Speaker 1: like that. Sunday, well to the Mom's Club. Do you
28:01
Speaker 1: have a question or tell us a little bit about yourself,
28:03
Speaker 1: and then do you have a question for Nancy.
28:05
Speaker 6: Yeah, my name is Sunday Douglas. I live in Lafayette, Louisiana.
28:09
Speaker 6: I'm a registered nurse, been healthcare for twenty five years.
28:13
Speaker 6: I have got two boys, twenty two and sixteen year old,
28:17
Speaker 6: and two sheepadoodles toddlers.
28:20
Speaker 1: Oh well, I.
28:21
Speaker 2: Love all of them.
28:23
Speaker 7: I have sheepa dood oyls, and a nurse. So keep going, yeah,
28:28
Speaker 7: out there scratching up the garage. Okay, stand I'm in
28:31
Speaker 7: here doing something without them. So I have a question
28:35
Speaker 7: for Nancy.
28:36
Speaker 6: Everything in this show right now is resonating due to
28:40
Speaker 6: healthcare and MS and what I do for a living.
28:45
Speaker 6: I am providing oxygen therapy systemically.
28:51
Speaker 4: With EBOO.
28:54
Speaker 6: So I wanted to ask Nancy, have you ever with
28:59
Speaker 6: your physicians, Western, holistic whatever, have they ever talked about
29:05
Speaker 6: oxygen and decreasing inflammatory processes in the MS.
29:10
Speaker 4: I have not, I really am. I know there's I
29:15
Speaker 4: think if something works for somebody, that's great. I've had
29:19
Speaker 4: a pretty good case of it. I've been doing pretty well.
29:22
Speaker 4: I've never done it, but I know other people do.
29:25
Speaker 6: Yeah, what we're doing down here, it kind of resonates.
29:31
Speaker 6: I am performing a new procedure e b o O
29:34
Speaker 6: it it actually oxygen oxygenates the blood and we're seeing
29:38
Speaker 6: decreases in inflammation. So it's bringing the oxygen to the
29:46
Speaker 6: brain all the way really down to your toes and
29:49
Speaker 6: hitting all those areas. And you hit on something earlier
29:52
Speaker 6: with trauma, even mental trauma with divorces or loss, and
29:58
Speaker 6: then that always triggers, you know, a deficit in something,
30:03
Speaker 6: and then when you get into a major accident, it
30:05
Speaker 6: springs up that inflammation. And we started noticing that just
30:09
Speaker 6: adding respiratory support systemically to those areas decreases inflammation. So
30:16
Speaker 6: I just didn't know if you had ever had any
30:18
Speaker 6: of those treatment plans before in your area, or know
30:22
Speaker 6: of anybody in your foundation that is exploring that.
30:26
Speaker 4: It's not one of the studies that we have ongoing,
30:28
Speaker 4: but if it's something that's you know, really working for
30:31
Speaker 4: so I want to look into it more.
30:33
Speaker 1: Yeah, because I feel like you're learning a lot of
30:36
Speaker 1: new things all the time. And in fact, when Nancy
30:38
Speaker 1: said that about trauma, it was interesting because when I
30:42
Speaker 1: was I was giving birth, I had an emergency C section.
30:46
Speaker 1: My baby was ten weeks early. I developed Bell's palsy
30:50
Speaker 1: on the table while I was delivering him, and I'm
30:54
Speaker 1: just like and then they called the neurologists. I didn't
30:56
Speaker 1: realize that was, you know, a neurological thing. So yeah,
30:59
Speaker 1: we're learning a lot more about all of that. So
31:01
Speaker 1: that's really interesting.
31:02
Speaker 2: Yeah, thanks Sunday for bringing it up, because we never
31:05
Speaker 2: really know what works for, like Nancy said, each individual person,
31:10
Speaker 2: and I can see that being a huge benefit.
31:13
Speaker 1: The MS gala which we went to. Can you tell
31:16
Speaker 1: us a little bit about that? When is it this year?
31:19
Speaker 1: What's you know? Who do you have on tap? Because
31:21
Speaker 1: that's a great event.
31:22
Speaker 4: Everybody in the whole world is to come thirty word
31:27
Speaker 4: Race to Race MSS. When we first started it was
31:30
Speaker 4: an Aspen. It's now back in La where I live.
31:33
Speaker 4: It's going to be really fun events at the Century
31:37
Speaker 4: Plaza Hotel. It's a fairmount Century Plaza. We always have
31:40
Speaker 4: the best, best entertainment. We have a great auction. The
31:43
Speaker 4: day after, we have all of our doctors all fly
31:45
Speaker 4: in and we have this forum that is completely amazing.
31:48
Speaker 4: And if people can't actually come to Race to REMS
31:52
Speaker 4: on June fifth, on June six will be having this
31:54
Speaker 4: and they can access that through a portal and be
31:59
Speaker 4: able to watch live what we do and they can
32:00
Speaker 4: actually ask questions of the doctors as well, because we
32:04
Speaker 4: certainly have the most you know, brilliant team of doctors
32:06
Speaker 4: and they're always coming and reporting on the latest and
32:08
Speaker 4: the best, you know research. Because it's MS is evolving
32:11
Speaker 4: quickly compared to every other disease, there's so much happening
32:15
Speaker 4: and the idea that you know, they get UPTY approval
32:18
Speaker 4: and MS almost one drug per year. It's pretty unprecedented,
32:22
Speaker 4: So I don't see that happening in other diseases. But
32:25
Speaker 4: it's important to be on top of it, and you know,
32:27
Speaker 4: and sometimes when you hear somebody else to ask a question,
32:30
Speaker 4: it resonates with something you're going with. But as you're
32:33
Speaker 4: going through in your life is it's you know, hard
32:35
Speaker 4: to solve and you're probably not the only person going
32:38
Speaker 4: to it's it's kind of it's interesting to listen. So
32:40
Speaker 4: we'd love people to come. They can go to erase
32:42
Speaker 4: ms dot org. You can buy tickets you come. We
32:46
Speaker 4: always need great auction items, so if anybody wants to
32:48
Speaker 4: donate auction items, we have like the most coveted auction.
32:52
Speaker 4: We have a great fashion show this week this year
32:54
Speaker 4: with Lejohn's. We're honoring a wonderful girl who was diagnosed
32:58
Speaker 4: about a year and a half and she she runs
33:02
Speaker 4: things at Disney. She's amazing. She's got such a wonderful
33:06
Speaker 4: a dude or honoring a girl named Naomi, and we
33:11
Speaker 4: always have a very star study crowd. We also have
33:13
Speaker 4: a lot of doctors there and it's it's always very
33:16
Speaker 4: inspiring and so I love that we were able to
33:19
Speaker 4: do this every year and it is our fundraising tool
33:22
Speaker 4: so that we take that money and we can fund
33:24
Speaker 4: you know, brilliant research with doctors who are going to
33:26
Speaker 4: do very new, very cutting edge things, and that to
33:29
Speaker 4: us is really important.
33:30
Speaker 1: It's a great event when and it's an up event,
33:33
Speaker 1: you know what I was. Everybody was dancing at the end.
33:36
Speaker 1: I mean, it's a very up, fun, inspiring event. So yes,
33:41
Speaker 1: everyone in the world check it out, come and join.
33:44
Speaker 1: It's really great and definitely help a really important cause.
33:48
Speaker 1: And in fact, we've even we even got one of
33:50
Speaker 1: our zoomer moms. We one year we donated the opportunity
33:54
Speaker 1: to be a zoomer mom and we had a Zoomer
33:55
Speaker 1: Mom on the show as a result of the race
33:58
Speaker 1: to erace Mscalus. So thank you so much Nancy for
34:02
Speaker 1: joining us. Has been so informative and I hope more
34:04
Speaker 1: people are inspired by what you've said and learn a
34:08
Speaker 1: lot and do their part to help. And thank you
34:12
Speaker 1: Zoomer Moms for joining us. As always, we love having
34:15
Speaker 1: you on the show. It is so much fun. Check
34:19
Speaker 1: us out on social media. We are all over the
34:22
Speaker 1: place now. We have a YouTube channel and we are
34:26
Speaker 1: on Facebook, Talk, Instagram, And it's me just being silly
34:30
Speaker 1: most of the time. So I'm just doing fun videos
34:33
Speaker 1: about fun mom stereotypes that you know, aren't really like,
34:37
Speaker 1: that's not really me, just so you know, but it's fun.
34:40
Speaker 1: It's fun to do well, Julie, I can't believe the
34:42
Speaker 1: time has already passed. It always goes by so fast,
34:45
Speaker 1: it does. But we will be back. Oh wait, hold on,
34:49
Speaker 1: remember our motto. Oh yeah, this is extremely important, ladies,
34:52
Speaker 1: very important. What's our motto, Julie. If you don't laugh sometimes,
34:55
Speaker 1: what's going to happen?
34:56
Speaker 2: You are going to cry.
34:57
Speaker 1: So keep laughing, keep laughing, lady, and we will see
35:01
Speaker 1: you next time inside the Mom's Clubhlash