HMF Special Edition: Centennial Voices | Houston Medical Forum at 100

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And so, as a practitioner, a neurologist, I almost see myself as an outside person standing just before the edge of a cliff and watching people walk off.
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And I can no longer stand silent doing that.
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That was Dr.
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Randall Wright, a neurologist in Houston, and we're coming back to that cliff.
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Just hang with me.
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We're coming back because what he's talking about matters.
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But first, I do want to tell you where we are and why we're here.
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So in 1926, black physicians in Houston organized the Houston Medical Forum.
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This was a time when segregation closed doors to medical training, professional organizations, and hospitals.
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So the doctors were building a communal, professional community while caring for people that needed them and creating a space for the doctors to be able to pull together and um pretty much build their own professional organization.
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And a hundred years later, the forum invited us to their centennial gathering, bringing together physicians, researchers, survivors, and families together.
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So I'm Angie Cawthorn, host of Brain Friends.
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Brain Friends, and we brought conference voices to Houston to listen, to learn, and ask some questions.
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And listen, I brought back, I brought back more than what one episode can hold.
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You'll hear from these conversations throughout our Brain Friends season.
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But today I want you to meet some of the people who made that gathering special.
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So I'm gonna start with Dr.
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Brandy Freeman because her story tells you what an organization like this can mean in somebody's actual life.
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It shows you how it works when uh someone pours into you and directs your steps in a way with love and care.
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Um so anyway, I've said too much.
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I've said too much.
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All right, we're gonna get into it.
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All that to say, welcome to bring friends.
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Let's get it.
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Sure.
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Um, so Brandy Freeman, I'm a pediatrician.
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I'm originally from Houston, Texas.
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Um, I work now at the University of Colorado School of Medicine and that serves as the 127th president of the National Medical Association.
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Oh, Houston?
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Huh?
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Oh, no, so Iname, we represent um doctors across the country.
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So InMA was founded in 1895.
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Um Houston Medical is celebrating 100 years right now.
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Yes.
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Um InMA, they are a component society of the National Medical Association, and so um I'm honored to be here as part of their centennial celebration representing the national organization.
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And so you are the 127th president?
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Yes.
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That is amazing.
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Come on, black girl.
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Oh, thank you.
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So you're a pediatrician by training.
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Yes.
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So what is the importance of these types of medical research organizations?
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Why are they important for people to plug into?
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So, you know, one of the things is the mentorship and sponsorship that these organizations are able to provide.
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So, as a medical student, so I actually went to Baylor College of Medicine for medical school.
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And so the Houston Medical Forum was a huge support for me while I was a medical student, allowing me to see professionals who were already where I wanted to be, supporting us along the way, giving us scholarships to help pay for things.
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So it's a huge difference for these organizations to exist.
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Um we're still very important today, you know.
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And the truth of the matter is it's probably more important now.
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Uh so I was very blessed too.
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So I grew up in Houston.
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However, my parents, interestingly, were I didn't realize it at the time, they were very intentional about making sure all of my doctors were black.
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So I really only thought doctors were black because all of them were.
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Oh my god, I love them! So my pediatrician, the gentleman named Bob Austin.
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So I think he invested in me from he liked to say the day he I was born.
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He went into the nursery and said, You're gonna be a doctor.
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But he supported me through choosing a college, choosing a medical, choosing a job.
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Um, and so I was really fortunate from that perspective to have that role model, um, that mentor to help me get to where I wanted to be.
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Who else helped you?
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So my mom.
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A couple of moments are always mom.
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And I've been really fortunate to have role models across the country.
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I think of people here in Houston from a leadership standpoint who were great examples for me.
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Those who were even some of who are here today, Dr.
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Kevin Smith was president of HMF when I was a medical student.
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Right.
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Did they give you any great advice?
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Um, so along the way, someone told me you can do all things, you just don't have to do them at the same time.
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Come on.
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So I think that's been an example or a lesson that I tried to keep um centered.
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I'm not doing great with it this year.
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Maybe a little too much sometimes, but um really thinking about you know, you have a time and a season for things, and that God has put you in a place to do certain things at that time, and then you move on.
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Dr.
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Brandy Freeman knew the people who opened the doors for her.
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But you know what I kept hearing in Houston.
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Sometimes people who made a way came long before us.
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And Dr.
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Joni Hare found out and shared something with us about her own journey and her own family.
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I was blown away, and uh, let's just get into it.
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All right, so I am here with Dr.
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Joni Hare.
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Dr.
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Hare, welcome to Brain Friends.
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Welcome.
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I'm glad to be here.
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All right, all right.
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So tell me about yourself and what you do and why are you here at the Houston Medical Forum?
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Well, first of all, thank you for the interview.
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Um, second of all, my name is uh Dr.
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Joni Hare.
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I am a maternal fetal specialist.
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Um that I take care of high-risk women who are having babies.
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Well, let me just go back.
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Okay.
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Um I wanted to be a doctor because I wanted to help my older family members, and I chose to be a doctor at five years of age.
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Okay, so my trajectory was only to be a doctor.
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I thought I was gonna be a pediatrician or geriatrician.
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And then, you know, um, I delivered my first baby, and I said, wow.
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This is amazing.
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It's amazing.
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And I knew my great-great-grandmother when she was older, um, but I never knew she was a midwife until I became a resident in OBGYN.
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How'd you find out?
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Well, you know, we talked, I talked to my uh great-grandparents, and they said, Oh, you're gonna be like grandma candy.
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And I said, What do you mean, grandma candy?
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Grandma Candy, what did she do?
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She was a midwine.
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I didn't know that.
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Look at that.
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Look at that.
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So, come on.
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Come on, I love it, I love it.
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Where were you your family from?
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Um, I'm from Birmingham, Alabama.
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Come on, come on, Alabama.
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And my great-great-grandmother delivered most of the babies in Sumter County, Alabama.
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So, shout out to great great-grandma candy.
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Yeah.
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So you were living a lineage that you didn't even know about.
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I did not know.
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That is such a blessing.
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And I wonder how many lives your family has brought into the world.
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I mean.
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Well, I've all did almost 3,000 deliveries.
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Okay, well, okay, and then there's that.
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Grandma Candy probably did.
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I I actually have her birthy record.
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She had the record?
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She has the records, I have them.
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She has the records?
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Yes.
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What years was she doing that?
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1900s, 1920s.
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Oh my god, 1930s.
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No, so I mean, I've been looking at my my personal, my family history, and so when you say the 1920s and 1900s, and she kept her own records for the African-American community to have record that you were born in Alabama.
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Yes.
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It's huge.
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That's true.
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It's huge.
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And the fact that she's delivering babies and keeping record, I love that.
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I I can't even tell you.
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So anyway, back to you.
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So let's go back to why, you know, as a resident, I was a resident, a Baylor in Houston.
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And I saw too many African American women that said, I have never seen a black doctor.
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And more importantly, I saw too many African-American women who had never seen a high-risk doctor, a maternal field of medicine.
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They were all men.
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They were mainly white.
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I was uh a couple of women there.
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And then when I thought about it, who was the ones that were sick in the ICU, the black women.
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Right.
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And so I decided to become a maternal field of medicine.
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So I went to Philadelphia, came back, and I didn't know where I land, but I came back to Houston, and quite naturally I knew that I was the first African-American year to practice maternal field.
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All right, let's go.
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Okay, well, first of all, welcome to Bring Friends Portia Davis.
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Um, quick question.
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How do you, when you're looking at the work that needs to be done in our communities, how do you build trust with a community that distrusts the health system as a whole?
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What's the best way to kind of uh rebuild that trust?
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I honestly I I think it goes back to my hat as an academician.
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I believe strongly you have to train those that are coming up that are going to be providing care to and for and with the community on how best to meet their needs because representation matters.
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Understanding the history of this distrust is essential, and then working within systems that exist or creating new systems to be able to bring people to the places where they need to be to best care for their health.
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On the flip side, as a community-engaged person, I think it is very important to be open, approachable, and work within your spaces.
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So what does that mean?
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I'm heavily involved with my church.
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Come on, church.
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What's the name of the church?
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Give them a shout-out now.
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Fit for Church of Christ.
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I have been I have been a member of that church for over 20 years, and it's I was a member as I went through pharmacy school, as I matriculated, so they've been there.
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So where there are opportunities, such as partnerships like this with Houston Medical Forum, UT Health, and their research endeavors, particularly when these investigators and the people leading these opportunities look like the fifth war community, speak like the fifth war community.
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Come on.
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When you bring opportunities, we show up.
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Yes.
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And church members, our community members, they trust the source of the information because of the liaison bringing it.
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And because when those that show up, it's not a one and done.
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We don't just come in, drop this information, and then we're out.
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Or get this information.
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Get this information and then we're out.
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And then out, gone.
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Just yes.
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So you build trust when you bring something highly valuable.
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You follow through on what you say you're going to deliver to the community, and then help establish pathways for them to access this type of care that you've educated them that they need.
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That they need.
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Right.
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Don't tell me I need water, but you ain't got no way for me to get no water.
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Exactly.
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And I think, you know, a part two to that is also helping our community understands that it's okay to ask questions.
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You have to be your own advocate.
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You've got to stand up, ask questions.
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If something doesn't make sense, um, it feeds into that mistrust.
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And so the the it's a two-way street.
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The conversation comes from the person receiving here, but it also is imperative for the provider to break things down, make things not so high in the sky, make it attainable, speak to research, speak to opportunities that involve people volunteering to participate in so that we have a better understanding of how to treat all patients, not just some patients.
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And it could be very small.
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It could be something as simple as filling out a survey, going to a focus group, giving your voice to a topic of conversation in a room of people that have experienced a similar health event as you.
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All of that drives how we practice and care, and on the flip side, drives how we build trust.
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So just a couple of things.
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So you're saying this is why the lived experience voice is important.
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Absolutely.
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It's it's I would put it almost as important if not, um, just slightly underneath this the scientific part.
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We know the science.
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We're gonna always build these protocols and these trials and have ways to evaluate that data.
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But the lived experience, it fills in a lot of the unknowns and it helps us better break down highly scientific complex information paired with lived experience, makes a whole picture for a patient or their family member or caregiver or all of them to understand.
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Because we're not just coming at you with the this is what you need to do because our research shows.
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We're also taking into account how important that lived experience and what that actually looks like.
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I want you to eat healthier because you've had this heart attack.
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But what that means is I need to talk to you.
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Who is the person cooking for you?
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Who is the person that comes and checks on you?
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Everybody needs to sit in this conversation.
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So we all have the same understanding of what that looks like for you.
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And then it's not just for you to do, whole family.
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Right.
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Your whole everybody.
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If you have to eat this way, guess what?
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It's healthy for everybody.
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So I mean, we're not making two, three meals.
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We're not making it.
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I wish my mother would.
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We're not listening you're gonna eat what we give you.
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But but seriously, I used to care for patients that had diabetes, and 98% of my patients were Spanish-speaking Hispanic patients.
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The whole family came to the appointment for dad.
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Come on.
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Dad's going to work all day, every day.
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Wife and kids.
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Kids maybe translating, maybe I don't know.
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Everybody's in one car, everybody comes to the appointments.
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Wife sitting there taking notes, asking questions, kids asking questions.
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All of it circling around dad.
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But guess what?
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Whole family implementing changes.
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It's beautiful.
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It works, but you have to involve everybody.
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And then they start to trust you because you care about the whole family.
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Yeah, and how right, and how are you doing, caregiver?
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How are you doing, care partner?
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Does it so?
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And are you gonna do this?
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And can you do this?
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Can you do it?
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Is it is it sustainable for any for more than these two weeks?
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Because now you're scared.
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Right.
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So you're doing things to make sure you hold on.
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But when he's better and or doing better in whatever capacity, do I begin to fall off?
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Thankfully, you know, sometimes it worked, sometimes it didn't.
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But what I found was consistency.
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So we reiterate the messages.
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Every time you follow up and the whole family comes, or part of the family's not there, you ask, What happened?
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Where are they?
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Is everybody okay?
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How is this working for you?
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What's not working?
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Why not?
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Here's another strategy we can use instead.
00:17:00.799 --> 00:17:05.440
We're gonna get you to where you need to get, but it's a it's a marathon, it is not a sprint.
00:17:05.599 --> 00:17:06.400
Come on, sprint.
00:17:08.240 --> 00:17:10.559
And so we have to play the long game and be patient.
00:17:10.640 --> 00:17:24.799
But when you start to see this change that you've implemented with sustained results, I don't have to say anything else as your provider, because you see it and you feel it, and you feel good, and your family feels good, and so you just keep right on doing what you're right.
00:17:24.960 --> 00:17:28.000
Why would I go back to where I don't feel good?
00:17:28.559 --> 00:17:40.960
Okay, so one thing I appreciated about these doctors is that they weren't just talking about what people should do, kind of from on high, giving you the wagging the finger.
00:17:41.519 --> 00:17:55.039
They were acknowledging and talking about what gets in the way, the cost, the access, the food in the neighborhoods, and even knowing what questions to ask.
00:17:55.359 --> 00:17:58.319
So I met uh Dr.
00:17:58.960 --> 00:18:07.680
Chandra Higginbottom, and she had all he to say about that.
00:18:08.000 --> 00:18:15.440
She was a joy to me, and um we're gonna get into that, and I'll let her speak for herself.
00:18:17.680 --> 00:18:19.519
My name is Chandra Higginbaum.
00:18:19.920 --> 00:18:21.839
Tell me about yourself.
00:18:24.960 --> 00:18:26.400
I don't know if we have enough time.
00:18:27.039 --> 00:18:28.240
Come on, girl, you better go ahead.
00:18:29.039 --> 00:18:33.119
Um, I'm an encourage, I'm I'm an empower.
00:18:33.519 --> 00:18:35.440
Um, I know my purpose.
00:18:35.599 --> 00:18:36.799
What is your purpose?
00:18:37.039 --> 00:18:42.880
I believe God placed me on this earth, first of all, to love him and to serve his people.
00:18:43.920 --> 00:18:49.119
And I serve his people by showing them how to become the CEO of their health.
00:18:49.200 --> 00:18:51.440
That is one way that I serve his people.
00:18:53.119 --> 00:18:55.519
CEO of your own health.
00:18:55.680 --> 00:18:56.640
I like that.
00:18:56.880 --> 00:19:01.759
So if I'm the CEO of my own health, how what does that mean?
00:19:01.920 --> 00:19:03.759
How does that work in real life?
00:19:03.920 --> 00:19:17.519
And if I am afraid of CEO and being in charge or I don't have the the fortitude, how does that how does that translate to real life and helping people manage their own care?
00:19:17.680 --> 00:19:26.960
Because I'm assuming that's what you're saying, is that you want them to manage their own care and know what they're asking and why they're asking and what they need to ask.
00:19:27.359 --> 00:19:45.599
So I teach my clients how to understand their numbers, how to read their labs, how to understand that what they put in front of them three times a day, i.e., their plate, right, their fork, right, significantly influence the expression of their cells.
00:19:45.839 --> 00:19:51.839
And how and their cells can either facilitate good health from a genetic perspective or bad health, right?
00:19:52.240 --> 00:19:54.960
So I tell my patients we work collaboratively.
00:19:55.119 --> 00:19:57.839
Some of my patients think I'm a dictator, I'm not a dictator.
00:19:58.799 --> 00:20:00.799
I'm your shirt file, I'm your guy.
00:20:01.119 --> 00:20:01.359
Again.
00:20:01.839 --> 00:20:12.960
So I'm so excited about the Houston Medical Forum because it brings together community research and the clinical pathways such that we can begin to work collaboratively.
00:20:13.200 --> 00:20:13.839
Yes.
00:20:14.319 --> 00:20:15.119
I love that.
00:20:15.279 --> 00:20:16.240
I love that.
00:20:16.720 --> 00:20:22.160
What is your um goal or or uh what's the word?
00:20:22.319 --> 00:20:27.920
Um what is it that you do within the um HMF?
00:20:28.480 --> 00:20:29.920
I'm basically an ambassador.
00:20:30.000 --> 00:20:31.279
I'm on the steering committee.
00:20:31.440 --> 00:20:34.000
I went to the first symposium last year.
00:20:34.240 --> 00:20:37.200
Uh no, I was like, the first symposium should have been about a hundred years ago.
00:20:37.279 --> 00:20:38.880
So don't tell me it was just last year.
00:20:39.279 --> 00:20:44.559
The first symposium the first research symposium that the Houston Medical Forum had was last year.
00:20:44.799 --> 00:20:45.200
Really?
00:20:45.359 --> 00:20:52.240
And I I was not really involved with Houston Medical Forum, not actively, but I went to the research symposium.
00:20:52.319 --> 00:20:53.359
I was blown away.
00:20:53.599 --> 00:20:57.599
I was blown away because I'm a I call myself a research scientist.
00:20:58.000 --> 00:20:59.839
All right, I'm a nerd, I love to study.
00:21:00.000 --> 00:21:06.640
I study almost every single day, and I go down sometimes from rabbit hopes, but I do that just like I can stay on top of things.
00:21:06.880 --> 00:21:11.440
All right, so we are here with Dr.
00:21:11.680 --> 00:21:13.359
June Williams Coleman.
00:21:13.680 --> 00:21:17.920
What kind of doctor were you and what is your background?
00:21:18.240 --> 00:21:20.160
So I am still an obstetrician guy.
00:21:20.480 --> 00:21:27.519
Yeah, so still hasn't delivered 5,000 babies during my tenure of delivering.
00:21:28.160 --> 00:21:32.960
And I do miss it from that standpoint because I miss the engagement with my patient.
00:21:33.119 --> 00:21:46.000
I'm still very fortunate to have where, you know, barely a week goes by that one of them doesn't reach out to me just as kind of a mentor to say, hey, this is going on, Dr.
00:21:46.160 --> 00:21:46.640
Goldman.
00:21:46.799 --> 00:21:47.440
What do you think?
00:21:47.519 --> 00:21:50.559
This is what they told me, and I'm really happy to do that for them.
00:21:50.880 --> 00:21:57.440
What is the biggest thing that you feel is that can be done for doctors and the health as a whole?
00:21:57.680 --> 00:21:59.759
The health the health uh community as a whole.
00:22:00.160 --> 00:22:01.839
To bring trust back.
00:22:02.160 --> 00:22:03.759
Or maybe not even back.
00:22:04.240 --> 00:22:05.519
Let me take bad out.
00:22:05.839 --> 00:22:07.279
Just to bring trust.
00:22:07.440 --> 00:22:11.519
Because I think the distrust, it kind of started with distrust.
00:22:11.920 --> 00:22:13.039
So what can we do?
00:22:13.119 --> 00:22:15.440
What can be done to kind of spread that up?
00:22:15.680 --> 00:22:17.519
Yeah, so I think you're exactly right.
00:22:17.680 --> 00:22:25.119
There has been a lot of misinformation, a lot of disinformation that's very present in our society right now.
00:22:25.599 --> 00:22:53.519
Um, the enemy's focus has been on, you know, many of our members are already quote-unquote trusted messengers at the end of the community, but making sure that we are able to invest in their ability to continue to serve in that way, making sure they have the right information to get to the community, and then also making sure that um they're able to survive this environment and that we're able to create more black doctors.
00:22:54.000 --> 00:22:55.519
And here's something I love.
00:22:56.000 --> 00:23:00.160
Everybody wasn't a doctor with like 35 years of experience.
00:23:00.400 --> 00:23:09.680
We had people still learning medicine, we had lay people, but um I was already thinking about how to make it easier.
00:23:09.839 --> 00:23:16.319
The point is, we have people there that are thinking about how to make things easier to understand.
00:23:17.200 --> 00:23:24.240
Um, I met Albert Sharpon, a medical student with a family story.
00:23:24.319 --> 00:23:27.440
Um this young man gave me hope for the future.
00:23:27.759 --> 00:23:35.440
Okay, but let's get into this conversation with this young man who is going to be doing great things.
00:23:37.839 --> 00:23:44.240
Albert Sharpone, for the record, will you please state your name and what you do and where you do it?
00:23:44.559 --> 00:23:44.960
All right.
00:23:45.519 --> 00:23:48.160
Hi everyone, my name is Albert Sarpong.
00:23:48.319 --> 00:23:55.039
I am a third-year medical student at the Fatita Family College of Medicine at the University of Houston.
00:23:55.519 --> 00:24:06.079
So, Albert, what would you want a patient or family to understand about your research or about research in general?
00:24:06.640 --> 00:24:08.000
It's a great question.
00:24:08.240 --> 00:24:21.519
And the reason why it's a great question for me is because it ties directly into one, the type of physician that I am aspiring to become, and two my family and our family's mission.
00:24:21.839 --> 00:24:43.200
It follows our family because when I think about my grandfather, who was a professor at the University of Connecticut and at the University of Cape Coast in Ghana, uh during actually our time of independence going into our time as a democratic country, his whole focus was education and dissemination of knowledge.
00:24:43.440 --> 00:24:43.839
Wow.
00:24:44.079 --> 00:24:53.519
And as a clinician now, being his grandson, being the first grandson of uh grandchild in our family, um the same principles apply for me.
00:24:53.680 --> 00:24:54.160
Wow.
00:24:54.400 --> 00:25:36.480
Every research project I've ever been a part of, every class I've ever taken, whether in undergrad or now in medical school, and every bit of scientific prowess that I gain is always to one, teach my patients about complex scientific concepts, breaking them down to simple colloquial terms, and two, making sure that that knowledge is sustainable, that it lasts for them, that they can one understand what's happening with them, and then of course take that and apply that to whatever disease modality or pathophysiology that they're either currently facing or someone that they know of is facing, so they can they can help others, right?
00:25:36.960 --> 00:25:41.039
Now listen, before we go any further, a quick word.
00:25:43.599 --> 00:25:48.240
These conversations are for educational purposes only, okay?
00:25:48.480 --> 00:25:51.599
This is not personal medical advice, guys.
00:25:51.759 --> 00:25:53.839
Uh, you know, I have to do this every time.
00:25:54.240 --> 00:25:56.400
I I you know lock in.
00:25:56.720 --> 00:25:57.279
Lock in.
00:25:57.359 --> 00:25:58.799
Do not listen to Angie.
00:25:59.039 --> 00:26:04.000
This is not uh people are speaking from different circumstances.
00:26:04.480 --> 00:26:13.519
Um every person has different personal health things, and you need to talk to your own personal health care team.
00:26:13.599 --> 00:26:15.440
Again, do not listen to Angie.
00:26:15.599 --> 00:26:21.200
I never want to hear somebody say I was listening to Brayfree's and she said No, no, no, no.
00:26:21.359 --> 00:26:23.680
You today lock in.
00:26:24.079 --> 00:26:33.839
Alright, but listen, we are gonna get right back into it, and as we're speaking about different circumstances, um, do you remember Dr.
00:26:33.920 --> 00:26:35.680
Randall Wright from the beginning?
00:26:36.000 --> 00:26:48.000
Uh well, I want you to hear more about that cliff and what we might be actually able to do before someone reaches it.
00:26:48.240 --> 00:26:51.599
We are talking prevention with Dr.
00:26:52.240 --> 00:26:54.000
Randall Wright.
00:26:55.519 --> 00:26:58.400
Don't ever say Angie told you all to do nothing.
00:27:01.039 --> 00:27:02.799
Well, thank you for having me, first of all.
00:27:02.960 --> 00:27:04.319
So I'm a neurologist.
00:27:04.480 --> 00:27:14.319
I treat neurological conditions that range from stroke, epilepsy, dementia, neuropathy, all things that involve the spine and brain and nervous system.
00:27:14.799 --> 00:27:23.279
Um I'm near Houston, Texas, and I really look at the brain from a maybe a slightly different perspective than many other colleagues.
00:27:23.359 --> 00:27:33.599
Um I do believe that there are lots of things that the brain can do, and lots of things that we can do to help make our brains work more efficiently, but it does start with us in our own homes.
00:27:34.000 --> 00:27:35.039
Talk to me about that.
00:27:35.359 --> 00:27:36.000
Yes.
00:27:36.319 --> 00:27:45.599
So when we first started training as a neurologist, lots of the conditions that we that we trained to treat were the conditions that we thought were just acquired.
00:27:45.759 --> 00:27:53.039
Something happens to the brain, there's not much that you can do to prevent them, and all we did to do was just to manage them, therefore.
00:27:53.279 --> 00:28:09.440
Over the course of 25 years of practice, I've seen the evolution of how we treat neurological conditions from diagnose and adios, which is what it used to be, to now we can really truly manage many conditions, even dementia, and now we've been learning how to prevent those conditions.
00:28:09.680 --> 00:28:16.640
So it comes now to saying there are things that we all can do, but we have to change how we perceive our lives.
00:28:16.960 --> 00:28:23.039
Dementia strokes are becoming more and more preventable, and that information needs to get out.
00:28:23.119 --> 00:28:32.480
So thank you for giving voice to people like myself who can get this out to the community to say, hey, you don't have to suffer from conditions that we once thought were inevitable.
00:28:32.720 --> 00:28:33.359
These things.
00:28:33.599 --> 00:28:35.119
Talk to me about the prevention.
00:28:35.359 --> 00:28:36.000
Yes.
00:28:36.480 --> 00:28:44.640
So stroke, CVA, cerebrovascular accident was what it used to be called because we just thought that it happened to someone.
00:28:44.880 --> 00:28:46.640
You woke up one morning and you couldn't speak.
00:28:46.799 --> 00:28:49.119
Or your left side was completely paralyzed.
00:28:49.359 --> 00:28:50.880
My grandfather had a stroke.
00:28:51.039 --> 00:28:58.559
I remember waking up in my high school year, enjoying playing with him, and then one day he could no longer speak and he could no longer play with me anymore.
00:28:58.720 --> 00:28:59.920
And I didn't know what happened with that.
00:29:00.319 --> 00:29:02.000
Maybe that's why I'm here today.
00:29:02.960 --> 00:29:04.079
And we didn't know why.
00:29:04.160 --> 00:29:10.079
He spent the next maybe eight to ten years in bed, not moving until he passed away, unfortunately.
00:29:10.160 --> 00:29:11.200
He was a world battle.
00:29:11.359 --> 00:29:18.400
Yeah, he was he was a World War II hero who saw many battles, but that one battle he had a difficult time overcoming.
00:29:18.799 --> 00:29:22.400
Maybe that's why I'm an analogist now, and you never know how the Lord guides you.
00:29:22.640 --> 00:29:28.000
But as I learned over time, we learned that there were risk factors that were involved, which looking back, he had all of them.
00:29:28.160 --> 00:29:29.279
High blood pressure.
00:29:30.000 --> 00:29:32.960
You know, and and and those things do run in our culture.
00:29:33.200 --> 00:29:36.799
We're from Louisiana, and we're from an area called the stroke belt.
00:29:37.279 --> 00:29:39.359
Louisiana, Mississippi, Alabama, right?
00:29:39.680 --> 00:29:42.480
And and many people say, well, it's genetic.
00:29:43.119 --> 00:29:47.279
If we take a step back, we say, well, that's true.
00:29:47.839 --> 00:29:56.799
There are definitely some genetic um predispositions that can cause these conditions, but in Louisiana, Mississippi, Alabama, we all cook very similarly.
00:29:57.440 --> 00:30:03.359
We love to have a good gumbo, we love to have a good bootam, which is high in salt, high in fat.
00:30:03.680 --> 00:30:05.119
So that's what makes it tasty.
00:30:05.279 --> 00:30:06.079
That's what makes it tasty.
00:30:06.640 --> 00:30:07.759
And we grew up with that.
00:30:07.839 --> 00:30:14.000
And because it's the brain, we associate good times with with our experiences.
00:30:14.480 --> 00:30:14.960
Wow.
00:30:15.279 --> 00:30:27.279
And so growing up young, I learned that popcorn was good because I spent time with my dad going to a movie, and I associated that taste of popcorn, buttery, and salty and sweet with love and family.
00:30:27.440 --> 00:30:30.559
And so now that's a that's a comfort food, if you will.
00:30:30.960 --> 00:30:34.880
Ah, I've never thought of it that way, and that's why they call it comfort food.
00:30:35.200 --> 00:30:36.240
Yes, but that's training.
00:30:36.319 --> 00:30:38.160
If you go to another culture, it's not.
00:30:38.480 --> 00:30:40.559
It's so it's how our brains were trained.
00:30:40.720 --> 00:30:47.440
So, to my point, is that there are many things that we grow up doing that may be detrimental to our our own selves.
00:30:47.599 --> 00:30:51.759
And now when we try to introduce that to people as when they're older, it's a pushback.
00:30:52.000 --> 00:30:52.240
Right.
00:30:52.400 --> 00:30:56.559
So now it's a matter of learning and maybe unlearning some bad habits that we've been taught.
00:30:56.720 --> 00:30:58.079
So back to the stroke belt.
00:30:58.240 --> 00:31:07.920
Is it truly genetic, or is it what we that we cook, that we we put our love in our foods, but those foods, how we prepare them, may not be exactly the best way.
00:31:08.160 --> 00:31:10.400
That the the the food is not loving me back.
00:31:10.640 --> 00:31:12.160
It's not loving, it's not loving me back.
00:31:12.720 --> 00:31:14.000
It's a one-sided relationship.
00:31:14.240 --> 00:31:15.519
Yes, it's a good way.
00:31:16.480 --> 00:31:26.480
So within your work, like at the hospital or with patients, what could help patients and families?
00:31:26.720 --> 00:31:41.920
Um, what can people do to feel or to take agency over their what they're putting in their body because of the brain gut uh pipeline?
00:31:42.079 --> 00:31:44.240
How what what can be done?
00:31:44.480 --> 00:31:53.279
Is it just as simple as using you know a salt alternative, or is there other things that we need to really lock in on?
00:31:53.359 --> 00:31:56.319
Because there's food deserts, there's places that they don't have.
00:31:56.480 --> 00:32:00.880
Uh if there's only you know Popeyes, and listen, because who doesn't love the cream piece?
00:32:01.359 --> 00:32:01.839
Louisiana.
00:32:02.160 --> 00:32:03.759
Right, exactly, exactly, exactly.
00:32:04.400 --> 00:32:05.519
That was a food staple.
00:32:05.680 --> 00:32:14.000
Listen, I loved me a bowjangles toothpiece with some dirty rice and sweet tea that they make in North Carolina.
00:32:14.240 --> 00:32:16.079
And I remember I drank the tea one time.
00:32:16.160 --> 00:32:19.759
I went down and I drank the tea, and it was like Mrs.
00:32:20.000 --> 00:32:22.480
Buttersworth's syrup with some ice.
00:32:22.640 --> 00:32:25.119
It was so sweet, it was delicious.
00:32:25.200 --> 00:32:27.680
And I'm like, don't these people know there's an epidemic?
00:32:27.839 --> 00:32:30.319
But mind you, I'm like, Did you feel it?
00:32:30.400 --> 00:32:30.720
Yes.
00:32:30.880 --> 00:32:33.440
Yeah, but I'm still sucking on the straw.
00:32:33.599 --> 00:32:35.119
I'm still drinking it, you know.
00:32:35.359 --> 00:32:39.680
But I think we tend to, you know, like you say, you put that love in it.
00:32:39.839 --> 00:32:39.920
Yeah.
00:32:40.079 --> 00:32:46.000
And so I think to be blunt for your question is empowerment and recognizing that we can change.
00:32:46.880 --> 00:32:56.000
Just because we grew up doing something a certain way doesn't mean that we're destined to continue doing things that way, especially once we realize that maybe there's a different way.
00:32:56.160 --> 00:32:58.400
And it gets back down to perspective.
00:32:58.720 --> 00:33:00.720
What you see and what I see are two different things.
00:33:01.599 --> 00:33:03.200
Which one's right, which one's wrong?
00:33:03.440 --> 00:33:08.559
If I take a second look around the room, I see, oh, there's a bigger environment going on.
00:33:08.960 --> 00:33:16.640
So, yes, so we love comfort food, but does it have to be ones that are high in sugar and high in salt and high in fat?
00:33:16.880 --> 00:33:22.960
Or can we learn to provide love to our families and prepare meals that are different than that?
00:33:23.119 --> 00:33:26.400
And so it's being willing to accept that we can do things differently.
00:33:26.720 --> 00:33:28.400
How long have we been practicing?
00:33:29.680 --> 00:33:35.839
25 for 30 years trying to hide the gray hair.
00:33:37.680 --> 00:33:41.119
I was like, yes, I'm a she's on to me.
00:33:42.400 --> 00:33:43.359
Exactly.
00:33:44.400 --> 00:33:57.119
So, what has changed in that time from the time that well, actually, I'm gonna take one of your answers away from you because one of them was it will probably be um it well, let me get myself together.
00:33:57.359 --> 00:34:14.400
The question I want to ask is what has fundamentally changed in the way doctors or neurologists approach the brain, other than the fact that now you know that the brain isn't static and neuroplasticity is a thing.
00:34:14.559 --> 00:34:16.239
So now I I know that part.
00:34:16.400 --> 00:34:16.559
Yes.
00:34:16.880 --> 00:34:25.119
What else, what other factors has really changed the way you perceive or medicine is perceived in your in your eyes?
00:34:25.760 --> 00:34:33.760
That's I have I have to say that the neuroplasticity piece was the part that really, or is the part that really changes how I look in practicing.
00:34:34.000 --> 00:34:36.400
Um, how do people who had an aphasia recover?
00:34:36.559 --> 00:34:37.679
Is it just luck?
00:34:37.920 --> 00:34:44.079
Or are there certain things that lined up that either they did or were exposed to that allowed them to recover?
00:34:44.320 --> 00:34:48.000
And that's the science now that we're saying that makes a big difference.
00:34:48.239 --> 00:34:51.760
And that as we practice now, it's no longer just saying, here's your medication.
00:34:51.920 --> 00:35:05.840
It's let's change your diet, let's get you exercising, let's get you sleeping better, let's do the things that puts the brain's milieu in a position for it to recover and not just say, Here you go, diagnosed now.
00:35:06.159 --> 00:35:08.559
Right, you're the coach of your brain, put the best players in.
00:35:08.719 --> 00:35:09.519
Yes, let them play.
00:35:09.920 --> 00:35:15.199
Let the best players play and do your things to condition those players, as it were.
00:35:15.519 --> 00:35:21.119
And then let's not wait until you have something to prepare you for it.
00:35:21.519 --> 00:35:28.880
That dementia and strokes may have conditions that started long before we had our first symptom.
00:35:29.280 --> 00:35:31.920
And is that just because of our lifestyle?
00:35:32.239 --> 00:35:34.000
Is it because of our environment?
00:35:34.159 --> 00:35:43.840
You mentioned food deserts that puts you in a place where you don't have access to good food, or you only have foods that are high in sodium, and years of that can play a role.
00:35:44.159 --> 00:35:51.599
So when we're looking at health now, population health means looking at the structural environment in which all of us live into.
00:35:52.000 --> 00:35:56.400
And is a disparity truly because we're black or white, or is it because where we live?
00:35:56.800 --> 00:36:04.480
Right, and this is the thing that I think um, you know, as a person who survived a stroke, didn't really know much about them.
00:36:04.559 --> 00:36:07.280
Uh, but here's the thing: my mother had had five.
00:36:07.519 --> 00:36:08.079
Oh, wow.
00:36:08.239 --> 00:36:08.559
Okay.
00:36:08.960 --> 00:36:09.440
Five.
00:36:09.679 --> 00:36:29.280
And because my mother was an amazing woman, I feel I I used to feel I now, as I've had two myself, I'm like, I didn't give her the credence because I didn't know what that was like or what that meant to her or how she was suffering.
00:36:29.599 --> 00:36:29.840
Yes.
00:36:30.079 --> 00:36:34.239
I just she was fine, she she looked fine, and she was still cooking.
00:36:34.400 --> 00:36:34.639
Yes.
00:36:34.800 --> 00:36:42.079
So and she would tell me stuff, and I'm like, you know, but mom was also Betty Davis on a Tuesday.
00:36:42.239 --> 00:36:42.400
Okay.
00:36:42.639 --> 00:36:42.880
Yes, yes.
00:36:43.039 --> 00:36:44.400
Now you know what I'm talking about.
00:36:44.639 --> 00:36:47.119
Oh come take my nap.
00:36:47.440 --> 00:36:48.480
It was ridiculous.
00:36:48.559 --> 00:36:50.000
But, you know, shout out to Lula.
00:36:50.480 --> 00:36:58.639
But she was, um, now that I know that she had five and that I've had two, I realized where I need to be.
00:36:58.960 --> 00:36:59.199
Yes.
00:36:59.360 --> 00:37:02.559
And like I need to be locking in a little bit better.
00:37:02.960 --> 00:37:04.800
Um, I will share this with you.
00:37:04.960 --> 00:37:07.679
I made a thing called Neuroplasticity City.
00:37:07.840 --> 00:37:08.639
Oh, um, okay.
00:37:08.800 --> 00:37:13.280
And it's it's it's a brain city.
00:37:13.440 --> 00:37:18.400
It's on YouTube, and uh, it's based out of like Philadelphia, loosely out of Philadelphia.
00:37:18.559 --> 00:37:19.440
Yeah, go birds.
00:37:19.599 --> 00:37:20.000
Go birds.
00:37:22.079 --> 00:37:26.719
And but I talk about neuroplasticity so people can understand it.
00:37:27.039 --> 00:37:34.159
Because for me, them telling me about neuroplasticity was the most important thing because that gave me hope.
00:37:34.719 --> 00:37:35.280
Absolutely did.
00:37:35.679 --> 00:37:41.519
Because I'm like, there's there's a fight, there's a way to win, there's a way that I can actually get better.
00:37:41.840 --> 00:37:48.880
I need to figure out exactly what that is and how I can capitalize on that.
00:37:48.960 --> 00:37:53.599
And I was very disappointed that I didn't hear about it until years after my strip.
00:37:53.920 --> 00:37:58.239
Like I heard about it in 2000, my strip was in May of 2017.
00:37:58.400 --> 00:38:00.320
I heard about it in October of 18th.
00:38:00.960 --> 00:38:01.199
Wow.
00:38:01.280 --> 00:38:01.519
Yep.
00:38:01.599 --> 00:38:02.960
Well, it's never too late.
00:38:03.280 --> 00:38:05.840
The brain is plastic until we pass away.
00:38:06.480 --> 00:38:08.239
Yeah, and I can't that's the thing too.
00:38:08.320 --> 00:38:11.119
Like, because they used to say about the six-month thing.
00:38:11.360 --> 00:38:21.599
And I think we tend to hear a half of a comment when it used to be, you know, if you had brain damage, you would get better six months, three months.
00:38:21.760 --> 00:38:21.840
Yeah.
00:38:22.079 --> 00:38:24.800
And what they were saying is that's the time you get the most.
00:38:25.039 --> 00:38:26.400
That's when it's turned up.
00:38:26.960 --> 00:38:28.400
But that's not when it's not done.
00:38:28.559 --> 00:38:33.920
No, but to but to your point, there's so much that we need to know, and I think there's more hope than than that's out there.
00:38:34.079 --> 00:38:36.880
Now, sometimes it's, you know, it is what it is, right?
00:38:37.039 --> 00:38:50.159
Um but we do need to make sure that we educate ourselves, we communicate with our providers, um, and we learn that what can we do to help either prevent or to navigate, but just on settle for some of the first message that we that we get.
00:38:50.239 --> 00:38:56.960
So now here's something else I learned about the Houston Medical Forum.
00:38:57.920 --> 00:39:00.960
Um Dr.
00:39:01.440 --> 00:39:12.320
Carl Mark Howell practiced medicine and Houston for decades.
00:39:12.639 --> 00:39:20.079
He helped establish Lockwood Hospital and became part of a much larger fight for opportunity.
00:39:20.800 --> 00:39:21.440
And Dr.
00:39:21.679 --> 00:39:35.840
Edith Herbie Jones, another foreign member, helped establish a hospital to serve people who needed care, and she later became the first woman to lead the National Medical Association.
00:39:36.719 --> 00:39:37.679
But here's the part.
00:39:37.840 --> 00:39:38.960
Here's the thing, though, right?
00:39:39.119 --> 00:39:41.199
In the 1960s, I love this.
00:39:41.679 --> 00:39:56.800
When Texas Southern University students were arrested for protest and segregation, it was the Houston Medical Forum physicians that pulled their influence and monies to pay the bills to get those kids released.
00:39:57.039 --> 00:39:58.559
They used to bring in folks, okay?
00:39:58.639 --> 00:40:00.000
We springing you out, alright?
00:40:00.239 --> 00:40:02.000
We back on the streets, baby.
00:40:02.239 --> 00:40:07.599
And they understood that caring for the community didn't end at the hospital doors, alright?
00:40:07.679 --> 00:40:09.599
We get you out of the clinic, okay?
00:40:09.840 --> 00:40:13.119
And that brings me to another kind of struggle.
00:40:14.000 --> 00:40:21.360
What happens when the person who knows medicine suddenly becomes the patient?
00:40:23.920 --> 00:40:24.239
Dr.
00:40:24.639 --> 00:40:33.519
Julie Hare and I had quite a conversation about you guys check it in.
00:40:33.840 --> 00:40:41.119
But yeah, this organization has been doing great things for a very long time, and we are here celebrating this hundredth year anniversary.
00:40:41.360 --> 00:40:42.960
And uh, but let's get to Dr.
00:40:43.039 --> 00:40:43.440
Hare.
00:40:52.000 --> 00:40:53.199
You still have a phase?
00:40:53.599 --> 00:40:56.960
Yeah, I do, but it's um what an effect.
00:40:57.519 --> 00:41:04.000
My um I used to be the finance manager for one of the largest car dealerships in the country.
00:41:04.400 --> 00:41:09.440
I went to the hairdresser a week after my stroke and I could not add ten dollars to the tip.
00:41:10.559 --> 00:41:12.960
Which is fine if I wasn't good at math.
00:41:13.519 --> 00:41:17.679
Which would be fine if I wasn't the finance manager of the largest car dealership in the country.
00:41:17.920 --> 00:41:22.159
And so therefore talking is a whole thing.
00:41:22.480 --> 00:41:23.840
Negotiating.
00:41:24.079 --> 00:41:36.639
And I the mental gymnastics, which I'm sure uh you can appreciate, of having to get a word out, I still go through those, but not as nowhere as uh prevalent as it was.
00:41:36.800 --> 00:41:41.199
I can I can act like I'm not having a problem.
00:41:42.159 --> 00:41:55.440
I I learned I and I also believe um my previous job actually helped me through because uh because I was a talker, and as part of my job, I had to figure out different ways to say things.
00:41:55.760 --> 00:41:56.079
Okay.
00:41:56.480 --> 00:41:58.880
So I think it that also helped me.
00:41:59.039 --> 00:42:01.119
But anyway, you said you had two.
00:42:01.440 --> 00:42:04.400
Tell me about your events, please.
00:42:05.119 --> 00:42:11.360
My event, um I was um, it was on a Friday night.
00:42:12.079 --> 00:42:20.239
Um I was getting ready to pack for a trip to Israel that Wednesday.
00:42:21.199 --> 00:42:28.400
And Saturday night, it was one of the toughest weeks I've ever experienced stress wise.
00:42:29.679 --> 00:42:39.599
Um but I got home and um got up that morning at like two o'clock.
00:42:39.840 --> 00:42:45.360
My head was hurting, I had a horrible headache uh most of the week.
00:42:45.920 --> 00:42:55.599
Um, but I looked in the mirror and half of my face and I couldn't smile.
00:42:56.320 --> 00:43:02.159
I um couldn't go to the bathroom.
00:43:02.960 --> 00:43:06.639
I was I couldn't get up out of my bed.
00:43:07.199 --> 00:43:09.199
But more important, I live alone.
00:43:10.079 --> 00:43:13.360
It's hard like oh, it's not a stroke.
00:43:13.519 --> 00:43:18.639
You know, I know the size of a stroke when it's not a stroke, it's it's just a bad dream.
00:43:18.719 --> 00:43:19.039
Come on.
00:43:19.360 --> 00:43:20.480
Right, that that's for them.
00:43:20.559 --> 00:43:21.760
That ain't for me.
00:43:22.480 --> 00:43:48.800
And I continue to look in the mirror, I continue to um not be able to move my arm or balance, and um I d decided that I did have a stroke and so I needed to get somewhere quick.
00:43:49.360 --> 00:43:59.280
And um I called nine one one and so I called nine one one, they came.
00:44:00.000 --> 00:44:06.159
I went to Methodist Hospital and uh they took care of me.
00:44:06.880 --> 00:44:13.039
And uh I think Methodists they thought it was a stroke.
00:44:13.360 --> 00:44:18.639
Ultimately I found out I had a brain aneurysm that bursted.
00:44:19.119 --> 00:44:40.000
And so um I went to rehab uh for more than six months to a year, and um I was not able to put letters together, um, talk, eat.
00:44:41.519 --> 00:44:48.079
And that's but this is and I what I want people to know is that you know, it gets better, you know.
00:44:48.320 --> 00:44:49.360
It does get better.
00:44:49.599 --> 00:44:51.519
It's a lot, you have to fight.
00:44:51.760 --> 00:44:55.119
Woo! Yeah, it's a battle, it's a full-on battle.
00:44:55.360 --> 00:44:56.880
It's a battle every day.
00:44:59.840 --> 00:45:01.360
Your mind takes over.
00:45:01.599 --> 00:45:03.679
Sometimes you're very depressed.
00:45:03.840 --> 00:45:04.320
Mm-hmm.
00:45:05.039 --> 00:45:15.679
And um you I realize it's hard to be mind over matter when it's your mind that's what's the matter.
00:45:17.760 --> 00:45:18.559
I like that.
00:45:18.800 --> 00:45:20.079
I had a feeling you would.
00:45:20.320 --> 00:45:23.119
Because you understand what that means.
00:45:23.280 --> 00:45:29.920
I can say that to people that's never had a stroke all day, but there is not a stroke survivor that does not give me the Okay.
00:45:30.400 --> 00:45:50.639
Yeah, yeah, because it it it does things to your mind that people can't see and people don't understand what you're going through, which is why as a lived experienced stroke survivor, I lend my voice because I did have I was aphasic and I'm no longer as aphasic.
00:45:50.960 --> 00:45:56.400
I still have aphasia, but I can I can still I can navigate.
00:45:56.639 --> 00:46:00.000
But the people that cannot, who speaks for them?
00:46:01.760 --> 00:46:04.079
How do we get their word out?
00:46:04.320 --> 00:46:10.719
Because um certain things about aphasia, it affects your and doesn't it affects your communication, not your intelligence.
00:46:11.119 --> 00:46:19.920
But uh I fought Black Hill to get everything I could got back.
00:46:20.719 --> 00:46:21.360
Yeah, no.
00:46:22.079 --> 00:46:24.800
No, it's not it is, because you have to.
00:46:25.119 --> 00:46:26.320
And that's what I want people to know.
00:46:26.400 --> 00:46:28.639
Like, is it this ain't no, this is not a cold.
00:46:28.719 --> 00:46:31.679
This isn't and then and also it's not a broken arm.
00:46:31.760 --> 00:46:33.920
And I think that's where a broken arm.
00:46:34.159 --> 00:46:34.559
Mm-hmm.
00:46:34.719 --> 00:46:35.440
I agree with that.
00:46:35.679 --> 00:46:42.800
And that's where people, I think, you know, they're like, um, why aren't patients doing this and why aren't they engaging this way?
00:46:43.119 --> 00:46:47.360
Because they don't know how bad it is, and because one, you've never had it before.
00:46:47.519 --> 00:46:55.039
No, two, you don't know what it is, and you're like, oh, I like so when they were telling me I had a phasia, I'm like, okay, this is great.
00:46:55.119 --> 00:47:02.239
I have aphasia, but what is I because I could think okay, I didn't realize that it was a problem.
00:47:02.960 --> 00:47:03.760
You know what I mean?
00:47:04.000 --> 00:47:06.079
I could think okay, but I couldn't speak it.
00:47:06.480 --> 00:47:06.880
Exactly.
00:47:07.039 --> 00:47:07.840
And here's the thing.
00:47:08.400 --> 00:47:12.000
You know, I would just say things that was available.
00:47:12.719 --> 00:47:24.800
Yes, and you know I learned how to speak again and get words and have a conversation.
00:47:25.920 --> 00:47:26.960
Give a lecture.
00:47:29.119 --> 00:47:29.440
Yeah.
00:47:30.400 --> 00:47:44.880
It is um I yeah, no, I'm so glad we're having this talk because I definitely felt like when they told me, Oh, you have a phasia, and I'm like, Yeah, but I can't use my arm, and I didn't you know my hand was ridiculous.
00:47:44.960 --> 00:47:46.719
And so is your right hand as well?
00:47:47.039 --> 00:47:47.440
Yes, ma'am.
00:47:47.679 --> 00:47:48.079
Mine too.
00:47:48.239 --> 00:47:48.559
Mm-hmm.
00:47:49.199 --> 00:47:49.760
You're right handed?
00:47:49.920 --> 00:47:50.400
I yes, ma'am.
00:47:51.280 --> 00:47:51.840
Okay, right.
00:47:51.920 --> 00:47:55.199
And like I thought I thought I would not um operate again.
00:47:55.599 --> 00:47:56.239
Right, right.
00:47:56.320 --> 00:48:00.239
Um I'm not operating, but I'm doing ultrasound.
00:48:01.280 --> 00:48:02.719
And you're still helping your patients.
00:48:02.800 --> 00:48:02.960
Yeah.
00:48:03.280 --> 00:48:11.360
Because life does go on, and I think hopefully that this is I'm so glad that we that you decided to share that part of your story with me.
00:48:11.519 --> 00:48:14.159
Um and again, shout out to Great Grandma Candy.
00:48:14.239 --> 00:48:25.039
Okay, come on records, but this part here uh means a lot to me because you've walked that same walk, and if you didn't tell me, I wouldn't have known, and people tell me that all the time.
00:48:25.360 --> 00:48:26.159
I wouldn't have known.
00:48:26.559 --> 00:48:29.039
No, and that's and I and I wouldn't have known either.
00:48:29.199 --> 00:48:30.800
I'm like, okay, here we go.
00:48:30.960 --> 00:48:37.119
And but that's first of all a testament to God of his promise.
00:48:37.920 --> 00:48:40.239
And by his stripes, we are healed.
00:48:41.039 --> 00:49:10.719
Yes, we are, and that's the thing, and but it is hard, it's not an easy journey, and I just want people to know, but there is hope, and that's why I do this work because I was able to avail myself to research, and I just I never stopped working, and I just want people to know there is hope, and you know, my stroke or your stroke ain't the same, and they're not the same size, but if I had lost the size of uh my fist, that I may not be getting as much back.
00:49:10.880 --> 00:49:14.239
Obviously, it's you it's you know, area of the brain.
00:49:15.119 --> 00:49:23.679
So I'm not gonna judge people, I don't want ever a caregiver to listen to me and turn around to their person and say, Well, she did it, why ain't you doing it?
00:49:24.000 --> 00:49:35.679
It's not the same, it's not the same because if their hole in their head is bigger than mine, if I got a dime size and you have a 50 cent piece, it's gonna be night and day.
00:49:35.840 --> 00:49:41.519
And two inches to the left or half a centimeter to the right, it's the brain.
00:49:41.840 --> 00:49:44.239
So I use the term cookie cutter.
00:49:45.119 --> 00:49:48.559
Okay, you don't have cookie cutter medicine.
00:49:49.119 --> 00:49:51.920
So you don't have cookie cutter uh strokes.
00:49:52.960 --> 00:50:03.199
Well, um, I I like to share my story because I I feel like I didn't have the traditional stroke that people, and also we find that not everybody understands what stroke is.
00:50:03.360 --> 00:50:10.960
They think it looks a certain way and it doesn't, so I get told a lot and I get defensive about it, but I didn't I take teach it as a learning opportunity.
00:50:11.119 --> 00:50:21.360
I get told a lot, like, oh, well, you must have had a milestroke because they saw me like, you know, say six weeks after my stroke, and uh when I went to church and they're like, Oh, you had a milestroke, oh you're so-and-so-and-so.
00:50:21.440 --> 00:50:22.880
Well, they didn't have a mild stroke like you.
00:50:22.960 --> 00:50:25.119
And I'm like, no, I had a full semester.
00:50:26.559 --> 00:50:28.159
I was paralyzed on my left side.
00:50:28.239 --> 00:50:34.239
And I said, when they went to check to see if I had a brain bleed, I couldn't get on the table because my stroke was literally progressing.
00:50:34.400 --> 00:50:37.280
As we went to the hospital fixing, I was having an allergic reaction.
00:50:37.519 --> 00:50:38.719
We didn't know it was a stroke.
00:50:38.800 --> 00:50:39.199
Oh, wow.
00:50:39.360 --> 00:50:42.000
And I just happened to live seven minutes from the hospital.
00:50:42.239 --> 00:50:44.719
So I um was on my computer working.
00:50:44.880 --> 00:50:46.159
I've been working a lot.
00:50:46.320 --> 00:50:48.400
This is where the neural psych comes in.
00:50:48.559 --> 00:50:53.199
But I was working and my hand went numb, and I thought I had a rotator cuff injury.
00:50:53.280 --> 00:50:54.880
I thought it was from the ointment I was using.
00:50:55.360 --> 00:50:57.440
And we will make some excuses, won't we?
00:50:57.599 --> 00:51:00.159
Yeah, and I just I was like, oh, I've been using too much of the ointment.
00:51:00.880 --> 00:51:07.360
No, we will blame, no, we will blame some Chinese food that we had three days ago about my stomach hurting me.
00:51:07.440 --> 00:51:07.679
Yeah, I think.
00:51:07.840 --> 00:51:10.159
I'm like, well, you know, I had uh Chinese on Wednesday.
00:51:10.639 --> 00:51:16.079
I would not have thought, and uh my poor son, he but he he's just like, oh, and I called him up.
00:51:16.159 --> 00:51:18.800
Thank goodness he had just come home because I would have been by myself.
00:51:19.039 --> 00:51:19.519
Who is he?
00:51:19.760 --> 00:51:20.159
My son.
00:51:20.320 --> 00:51:20.639
Yes.
00:51:20.800 --> 00:51:24.639
And so I called him on the phone because he couldn't, he's downstairs, he couldn't hurt me.
00:51:24.719 --> 00:51:27.599
And I said, something's going on, my hands numb.
00:51:27.920 --> 00:51:30.960
And and so by the time he came upstairs, he's like, Well, come on, M.
00:51:31.039 --> 00:51:32.480
And I said, I feel a little funny.
00:51:32.559 --> 00:51:36.400
And I went to stand up and realized just I didn't feel right.
00:51:36.960 --> 00:51:38.960
But I still never would have thought stroke.
00:51:39.199 --> 00:51:41.440
Because I had been working, just working, working, working.
00:51:41.599 --> 00:51:45.920
And um, he says, Well, come on and lay down, and then when I went to start walking, I said, Nope.
00:51:46.000 --> 00:51:48.239
I'm like, get my shoes, we're we're going to the hospital.
00:51:48.400 --> 00:51:49.199
Something's not right.
00:51:49.440 --> 00:51:50.480
Still didn't think stroke.
00:51:50.559 --> 00:51:58.239
I thought because of the way all the tingling was happening, because I have the I have a physical reaction to orange or pure orange or it felt like that.
00:51:58.320 --> 00:52:00.960
It was everything was tingling, my tongue was tingling and my face was tingling.
00:52:01.119 --> 00:52:03.039
I have and I'm anaphylectic as well.
00:52:03.119 --> 00:52:04.480
So I have an epic pen.
00:52:04.639 --> 00:52:05.360
So no, I get it.
00:52:05.519 --> 00:52:06.559
And oranges as well.
00:52:06.719 --> 00:52:09.519
So and so that's what I was thinking was going on.
00:52:09.599 --> 00:52:14.639
I'm like, man, you know, like this oil, I couldn't read what was on the push, what was in the oil.
00:52:14.719 --> 00:52:18.400
I really was thinking that this stuff must be some pure oil or something.
00:52:18.639 --> 00:52:28.079
And so we get to the hospital, because again, I wouldn't have thought emergency call, but the hospital is down the street, and all the time I don't realize what's happening.
00:52:28.159 --> 00:52:32.559
Apparently, all the physical stuff was happening with the droopy face, and I don't know that because we're just driving.
00:52:32.719 --> 00:52:32.960
Right.
00:52:33.119 --> 00:52:34.159
We walk in the hospital.
00:52:34.320 --> 00:52:36.239
Actually, no, I couldn't really walk in the hospital.
00:52:36.320 --> 00:52:41.679
He got some some stranger who thankfully didn't have COVID to help me to get in good get into the hospital.
00:52:42.000 --> 00:52:43.840
So this is during COVID time as well.
00:52:44.000 --> 00:52:50.079
Yeah, because it was 23, but you know, but um the you know, they they helped me.
00:52:50.159 --> 00:52:51.599
I get into a chair in the hospital.
00:52:51.679 --> 00:53:00.719
The emergency room thing is over there, and my son goes to tell them, my mom's having an emergency uh allergic action, and they looked up and they saw me and they ran.
00:53:00.880 --> 00:53:04.639
I mean, when they were on it, they said your mom is having a stroke.
00:53:05.039 --> 00:53:23.440
And um, and she um and they k they came and took told me they're like, ma'am, you having a stroke, and I said, No, I'm not because I didn't you know I didn't know and because I'm not seeing myself, I still felt the same actually.
00:53:23.679 --> 00:53:33.360
And um, they got me on the table, they verified I didn't have a brain bleed, which was a the blessing, is what I and then they were able to give me the drug to break up the clock.
00:53:34.000 --> 00:53:38.480
And so, you know, within the doctor said he has never seen the medicine work that fast.
00:53:38.639 --> 00:53:45.920
But um, of course, my other blessing is they were able to get on the phones as our stroke specialist happens to be.
00:53:46.159 --> 00:53:47.840
One of my babies I raised.
00:53:48.079 --> 00:53:52.559
And um, and so they literally once they kind of looked her up and realized who she was.
00:53:52.960 --> 00:53:54.079
And what are you to Dr.
00:53:54.159 --> 00:53:55.119
Angel Sharif?
00:53:55.280 --> 00:53:55.840
I am her aunt.
00:53:56.000 --> 00:53:56.960
Yeah, your aunt, yes.
00:53:57.440 --> 00:54:00.639
So the medic, the clock luster started working right away.
00:54:00.880 --> 00:54:01.599
It really did.
00:54:01.760 --> 00:54:08.320
Like, I mean, literally, I went from like total paralysis, and that's why it kind of bugs me when people say, Oh, you didn't have a stroke.
00:54:08.400 --> 00:54:12.159
Um, tell me anything else that's gonna paralyze me on the left-hand side.
00:54:12.239 --> 00:54:13.760
I mean, I got to experience that.
00:54:13.840 --> 00:54:15.679
Thank God it wasn't for forever.
00:54:16.079 --> 00:54:31.280
My point is, I absolutely understand and how people can disregard because you're walking and talking, they have no idea the mental gymnastics consistently you have to go through to scramble and egg.
00:54:31.519 --> 00:54:32.000
Yeah.
00:54:32.239 --> 00:54:33.760
To scramble and egg.
00:54:33.920 --> 00:54:51.519
And I have actually been in my kitchen about to cook, and I'm like, I don't know, I know what I want the bowl to look like after I scramble the eggs, but I really didn't remember to just um it's the things that you can lose that you did not know were up for grabs.
00:54:51.599 --> 00:54:54.719
I don't know why I don't have it on a t-shirt, but listen, I'm thinking I should.
00:54:54.880 --> 00:54:55.440
I think so.
00:54:56.800 --> 00:55:01.119
And when you said that, what I thought about, because I didn't have so I didn't have the cognitive decline.
00:55:01.599 --> 00:55:05.039
I was passing all those tests, I didn't quite have that, but I had did have the physical.
00:55:05.360 --> 00:55:11.360
I can go through the physical therapy, but in terms of what you lose that you don't know that you was for me was the neurosite.
00:55:11.519 --> 00:55:16.400
I'd like to talk to you at another time about the neurosite because I think people keep missing it.
00:55:16.480 --> 00:55:20.159
They keep talking about the clinical results of what they see and cognitive.
00:55:20.400 --> 00:55:21.920
And I'm like, what about what you can't see?
00:55:22.079 --> 00:55:22.400
That's right.
00:55:22.639 --> 00:55:25.119
That's what I felt was my greatest help for me.
00:55:25.280 --> 00:55:25.760
Absolutely.
00:55:26.239 --> 00:55:30.960
Something that kept coming up is like what people don't see.
00:55:32.159 --> 00:55:43.280
You can look fine and still be dealing with a whole lot of neurological things that are going on, and that's not just limited to stroke.
00:55:43.760 --> 00:55:55.599
I met a woman living with Parkinson's who helped me understand just how much a neurological condition can affect the entire family.
00:55:55.840 --> 00:55:57.760
So, with that, I'm gonna get into that.
00:55:57.920 --> 00:56:04.000
Shout out to her, two Larry's, and to a teacher that is continuing to teach.
00:56:05.679 --> 00:56:18.480
Well, you know, with Parkinson's being a brain disorder, such as stroke, it can affect so many different things in your body.
00:56:19.360 --> 00:56:32.880
And a lot of people have assumptions about people with their chronic illness based on little knowledge or maybe some some some of their own experiences.
00:56:33.199 --> 00:56:34.159
Or TikTok.
00:56:34.400 --> 00:56:35.360
Yeah, thank you.
00:56:35.519 --> 00:56:36.239
Thank you.
00:56:36.559 --> 00:56:37.519
Exactly.
00:56:37.920 --> 00:56:49.280
And so when uh when people have certain expectations, they just they you know, then they'll have different assumptions about how you live with your condition.
00:56:49.760 --> 00:57:13.119
And so many people think that Parkinson's pretty much only involves you know a tremor or some of the visual uh symptoms that you can see and not realize how much of a struggle it can be, and that it is to live with uh a chronic illness such as Parkinson's.
00:57:14.159 --> 00:57:28.000
Um people often wonder, yeah, of course, you know, uh what are the struggles, or what do you have to deal with?
00:57:28.239 --> 00:57:36.079
And so um, they're quite surprised when they know, when they learn that it affects so many different parts of your being.
00:57:36.480 --> 00:58:17.599
And because uh, and that's one of the things that I that I wish in a way kind of had wish I had known sooner, but there's no way of knowing it because with Parkinson's, a lot of uh your changes and progression in your life that deal with your Parkinson's, they come along, they don't just all happen at the same time because everyone who has Parkinson's they don't experience all the same symptoms, and so as your condition progresses, so do some other illnesses or other things that come along that happen to your body as a result of your Parkinson's.
00:58:17.840 --> 00:58:30.159
Like, for example, I deal with um uh I have problems with autonomic functioning or autonomic dysfunction, if you will.
00:58:30.320 --> 00:58:33.519
Um my blood pressure drops often.
00:58:34.320 --> 00:58:43.280
I didn't really experience that prior to Parkinson's, and so um that is a problem for for a lot of people.
00:58:43.760 --> 00:59:00.480
I have uh uh what's called uh dystonia, where my uh certain limbs or certain parts of your body might cramp up or might might kind of get stiff or stuck.
00:59:00.800 --> 00:59:11.840
So if my medication's off, my toe, my right foot, my my toes or my right foot will curl up and just kind of want to stay there.
00:59:11.920 --> 00:59:20.960
And it's I have to tell myself, my brain and my feet have to kind of get connected and say, okay, relax.
00:59:21.280 --> 00:59:26.000
And basically what it is is just is my muscles just want to tense up.
00:59:26.320 --> 00:59:33.440
Okay, and they just my muscles don't want to do what my brain is really telling it it should be doing is relax.
00:59:34.800 --> 00:59:41.920
Um there are a number a number of things, uh bladder issues.
00:59:42.159 --> 00:59:52.960
I just started my I got my first injection, Botox injection last week for um overeactive bladder, and that is as a result of my Parkinson's.
00:59:53.199 --> 00:59:53.519
Wow.
00:59:53.760 --> 01:00:10.320
Which of course some might say you know that could be attributed to age as well, because that we know that age sometimes you know has those effects, but Parkinson's many a times may speed up some uh right, something that may have happened maybe in ten years.
01:00:10.559 --> 01:00:10.800
Exactly.
01:00:11.039 --> 01:00:13.039
You got it this afternoon.
01:00:13.679 --> 01:00:16.000
You got it, you you roll in the day.
01:00:16.239 --> 01:00:16.719
You're right.
01:00:16.960 --> 01:00:17.920
Wow, wow.
01:00:18.159 --> 01:00:28.559
So when you got the diagnosed, how long when before you got diagnosed, did you notice anything beforehand, or how did that tell me your story?
01:00:28.800 --> 01:00:48.880
You know, it's so interesting that you asked that because my husband and my son started noticing, of course, they started noticing some things long before I did because they started seeing some of the visual um cues being missed.
01:00:49.360 --> 01:00:50.079
Exactly.
01:00:50.320 --> 01:01:08.079
But um some instances in particular that I remember several months prior to my diagnosis, and actually even a couple years, but over time, my husband would often tell me some mornings, you know what?
01:01:08.320 --> 01:01:18.159
Last night you were just moving in your sleep and you were acting out your dreams, and you were hands in the air and doing all kinds of things.
01:01:18.320 --> 01:01:19.119
It's like, really?
01:01:19.760 --> 01:01:21.519
He said, Yeah, it's kind of weird.
01:01:21.679 --> 01:01:22.559
It's okay.
01:01:23.199 --> 01:01:28.559
And I just sucks for you, bro.
01:01:30.000 --> 01:01:31.599
I got a full eight.
01:01:32.239 --> 01:01:36.880
And it didn't happen often, or at least he didn't tell me that it happened often.
01:01:37.519 --> 01:01:38.800
And then he would have to notice it.
01:01:39.199 --> 01:01:43.599
He would you would have to actually wake him up, and then he would have to actually realize it.
01:01:43.760 --> 01:01:45.360
So it's really no telling.
01:01:45.679 --> 01:01:47.199
Because I don't remember a thing.
01:01:47.360 --> 01:01:47.519
Right.
01:01:47.840 --> 01:01:49.119
I don't remember a thing.
01:01:49.360 --> 01:01:57.679
And then um, then also I, you know, I suffered from uh constipation for the fact I don't know, 20, 30, 40 years for a long time.
01:01:57.840 --> 01:02:03.519
But again, constipation, thinking that you, you know, that's just common as it is.
01:02:04.000 --> 01:02:10.320
But little did I know that that's a predromal uh symptom for Parkinson's.
01:02:10.639 --> 01:02:11.840
Whoa, I did not know that.
01:02:12.079 --> 01:02:16.480
And I'm gonna say I could totally be wrong, but I know it's a very high percentage.
01:02:16.800 --> 01:02:28.000
A high percentage of people who have Parkinson's have had problems with uh constipation as well as REM sleep disorder.
01:02:28.320 --> 01:02:33.119
So I'm getting a quick nod from a neurologist in the room that's saying that that is indeed true.
01:02:33.360 --> 01:02:34.639
Yeah, yeah, yeah.
01:02:34.719 --> 01:02:36.400
And and that and that's me.
01:02:36.639 --> 01:02:37.920
So it's so typical.
01:02:38.079 --> 01:02:47.119
But then what really brought it to light was um near the tail end of COVID.
01:02:47.519 --> 01:02:52.480
Uh I found I once we were back in school, because I'm a retired school teacher, right?
01:02:52.639 --> 01:03:09.920
Once we were back in school, one day I was on my way home from work and I was kind of sitting in traffic, and I had my right arm on the gear shifter, you know, uh uh, and then I was um going to change the temperature control or the radio or something like that.
01:03:10.079 --> 01:03:10.559
I don't know.
01:03:10.639 --> 01:03:10.880
Right.
01:03:11.039 --> 01:03:17.119
I could not move my hand upon wanting to do it.
01:03:17.360 --> 01:03:18.000
Upon demand.
01:03:18.719 --> 01:03:20.639
Upon demand, exactly.
01:03:21.119 --> 01:03:25.199
I literally had to pick up my hand to move it.
01:03:25.360 --> 01:03:27.440
It's like, what is going on?
01:03:27.679 --> 01:03:34.400
And then I'm my first thought was the stress of the remote learning.
01:03:34.800 --> 01:03:50.000
During that time of COVID and doing the remote learning with my students, I was probably on the computer more in that short period of time than I have been in my 20 plus years of education.
01:03:50.239 --> 01:03:53.280
Because I'm not a sit in front of the computer kind of teacher.
01:03:53.519 --> 01:03:53.840
Right.
01:03:54.000 --> 01:03:54.800
I can see that.
01:03:54.960 --> 01:03:57.840
And so I can see you would probably be a favorite too.
01:03:58.639 --> 01:04:00.000
Many have said that, yeah.
01:04:00.400 --> 01:04:02.159
She's like, I mean, that's me.
01:04:03.280 --> 01:04:04.239
I love what I love.
01:04:04.639 --> 01:04:05.280
No, I can tell.
01:04:05.440 --> 01:04:08.480
I can tell you you you you exude that actually.
01:04:08.800 --> 01:04:10.159
Thank you, thank you.
01:04:10.400 --> 01:04:14.159
And so um there were instances like that.
01:04:14.400 --> 01:04:19.039
And then when my husband and son tell me, you know, when you walk, you don't move your arms.
01:04:19.519 --> 01:04:21.440
I feel fine, no big deal for me.
01:04:21.679 --> 01:04:24.400
I'm telling you, it looks awkward, okay.
01:04:25.039 --> 01:04:43.360
And then one day, um it just I think it just started boiling, and then I started seeing a tremor, and then my handwriting started getting small and sloppy, and then um just you know, stress and then anxiety.
01:04:43.679 --> 01:04:44.079
Whoo!
01:04:44.320 --> 01:04:46.159
Talk about it, talk about it.
01:04:46.400 --> 01:04:47.599
It is ridiculous.
01:04:48.079 --> 01:04:57.840
But again, keeping in mind all the stress, the COVID, the remote learning, which I thought was hell.
01:04:58.480 --> 01:04:58.719
Right.
01:04:58.960 --> 01:05:03.840
And so I thought all of that could be the worst things that are going on right now in my life.
01:05:04.079 --> 01:05:06.079
One, I should feel like this.
01:05:06.239 --> 01:05:06.719
Right.
01:05:06.960 --> 01:05:23.199
But meanwhile, my husband convinced me to go see my PCP, and I I told her all the symptoms, and she had me do many of those short exercises you do in the in the office, you know, to kind of get a clinical snapshot of what's going on.
01:05:23.280 --> 01:05:27.280
And she told me then that she thought it was something neurological.
01:05:27.840 --> 01:05:30.960
And she asked me if there was Parkinson's in the family.
01:05:31.760 --> 01:05:32.320
Was there?
01:05:32.559 --> 01:05:35.199
Uh no, okay, not to my knowledge at the time.
01:05:36.480 --> 01:05:44.079
And um, and then she realized that she had me to do a short trek across the office, walk, turn around, and I froze.
01:05:44.159 --> 01:05:47.039
I couldn't turn around immediately.
01:05:47.199 --> 01:05:56.960
And next thing I know, she left the office and came right back with a letter saying that you can't go back to work because you're a fall risk until we get you in to see a neurologist.
01:05:57.199 --> 01:05:57.840
Wow.
01:05:58.239 --> 01:05:59.519
And so maybe.
01:06:00.239 --> 01:06:11.519
I had to go through the wait to see if neurologists and one thing led to the other and uh test did some scan testing and so sure about it.
01:06:12.000 --> 01:06:12.400
Wow.
01:06:12.559 --> 01:06:49.440
Is there anything um I will ask you this what have you learned about Parkinson's that you wish you had learned sooner um probably that it affects the whole thing now this next conversation was completely unexpected and we had been recording throughout the conference throughout the day and this gentleman comes in and he was you could tell he was there on his network business right?
01:06:49.679 --> 01:07:04.400
He was there for to get some business cards and make some connections and and do some business, and what had started as another conference conversation became something none of us had planned.
01:07:04.639 --> 01:07:07.360
So I'm just gonna let you hear how it unfolded.
01:07:14.000 --> 01:07:17.440
So uh Terry Baylor, uh I am originally at St.
01:07:17.599 --> 01:07:26.000
Louis and but I reside here in Houston now, and I came here really to uh network and uh man it turned into something much better.
01:07:26.079 --> 01:07:27.840
Uh I turned into a student again.
01:07:27.920 --> 01:07:32.480
So just learned um I've learned a lot today.
01:07:32.639 --> 01:07:39.599
Uh as the conversation started to evolve, and I hear, you know, the physicians hear, of course, your story.
01:07:39.920 --> 01:07:48.639
And um my life has crossed that intersection with what's happening today, as I have a family member who's recently gone through a stroke.
01:07:48.960 --> 01:07:49.599
I'm so sorry.
01:07:49.840 --> 01:07:55.280
I appreciate I appreciate your uh just your your care and in that.
01:07:55.360 --> 01:07:59.199
And so we're just a couple weeks in and uh we're navigating it.
01:07:59.360 --> 01:08:02.719
And so I spent 18 years in healthcare IT.
01:08:02.880 --> 01:08:18.720
So when someone um has a health issue, I I tend to be the one that they kind of come to because I've you know very familiar with physicians, I know a lot of them and just the procedures, processes, and all of that, and really just helping them navigate their journey.
01:08:18.880 --> 01:08:26.239
Um, I've been fortunate to have uh, you know, some friends in that community who were patient um centric.
01:08:26.560 --> 01:08:33.359
And so they kind of taught me how to partner with the community to get the best outcome.
01:08:33.600 --> 01:08:36.560
So um I got a ton of questions.
01:08:36.640 --> 01:08:45.680
Um mainly, I guess the number one is, you know, what do you do as the as the caregiver or as even the patient?
01:08:46.159 --> 01:09:04.560
Well, I can't tell you about the care partner part because I was the patient, but what I can tell you is um first thing I will say before I even bring a real true care partner on is take care of yourself first, because you can't help nobody if you go down.
01:09:04.720 --> 01:09:07.600
And if he goes down, everything crashes.
01:09:07.920 --> 01:09:09.680
And that I'm very aware of that.
01:09:09.840 --> 01:09:11.439
Um patience is key.
01:09:11.680 --> 01:09:15.760
And I will also tell you, your brother has no idea what has happened to him.
01:09:16.079 --> 01:09:16.399
Okay?
01:09:16.960 --> 01:09:19.920
Um, you know it's a stroke, but you don't know what a stroke is.
01:09:20.000 --> 01:09:36.159
And what I mean by that is um, you know, they told me I had had a stroke, and I I don't know if you were here when I told the story, but I was like, I just want to go back to work in two weeks because I got this cruise and she's like, I'll see you in September.
01:09:36.239 --> 01:09:38.960
And I'm like, well, that's five, three months, four months away.
01:09:39.279 --> 01:09:39.840
What do you mean?
01:09:39.920 --> 01:09:41.199
All right, I'll take the summer off.
01:09:41.359 --> 01:09:47.680
I still didn't realize that I'm never going back to work again because I can't read.
01:09:47.920 --> 01:09:59.359
You know, and I you like I said, you lose things you don't know are up for grabs, and your family member at this time has no idea what he cannot do or she cannot do.
01:09:59.600 --> 01:10:12.720
So as a brother, my suggestion to you would be stand by your brother and and just do what you can and just give him grace and remind him remind him to give himself grace.
01:10:13.199 --> 01:10:15.680
I'm gonna bring in a caregiver to talk to you if that's okay.
01:10:15.840 --> 01:10:17.039
Yeah, I'd love that.
01:10:17.439 --> 01:10:19.199
Charles, thanks for just yes, sir.
01:10:19.279 --> 01:10:23.680
I appreciate you uh really, you know, really kind of opening up that that chapter, right?
01:10:23.760 --> 01:10:42.079
Because it's uh, you know, I'm asking you to relive some things and it's yeah, you know, um you're you're right in in that aspect, and for every single um stroke patient and survivor, every single one is different.
01:10:42.239 --> 01:10:47.760
Um, I think we heard on the panel today that every single one is is is different for each individual individual.
01:10:48.079 --> 01:10:52.079
Um the pressure that I felt was one, it's just my wife and I.
01:10:52.159 --> 01:10:53.119
Uh we don't have children.
01:10:53.279 --> 01:10:53.439
Okay.
01:10:53.680 --> 01:10:54.640
And we have a cat.
01:10:55.119 --> 01:10:56.000
That's what we're doing.
01:10:56.159 --> 01:10:57.680
No, I I I love cats.
01:10:57.760 --> 01:11:02.560
I'm a recent within the last year, cat surrogate, I guess.
01:11:02.640 --> 01:11:04.880
It's my son's, but yes, cats are special.
01:11:05.119 --> 01:11:05.600
All right, yeah.
01:11:05.680 --> 01:11:10.960
Well, and and the point to uh to that is that um that cat can't take care of us at this point.
01:11:11.199 --> 01:11:14.239
No, but I have to take care of her, yes, and also myself.
01:11:14.399 --> 01:11:14.640
Yes.
01:11:14.720 --> 01:11:25.039
Uh and that's the one biggest fear that comes up sometimes as to you have to listen to yourself because um sometimes you're sort of like if I'm not here for her, who else will be there for you?
01:11:25.199 --> 01:11:27.680
So you have to be careful with that and listen to yourself.
01:11:28.479 --> 01:11:32.880
But that adds added pressure to you and the family as a unit.
01:11:33.119 --> 01:11:40.720
Um, one thing I did find out in working with a lot of uh people who are stroke survivors is there's a few things that you need to know.
01:11:40.960 --> 01:11:44.239
One, let them finish their sentences.
01:11:44.960 --> 01:11:48.079
If they have a phasia, they're trying to work that word out.
01:11:48.239 --> 01:11:52.000
A lot of times, Angie will mention it's about like a brick wall that they run into.
01:11:52.079 --> 01:12:01.920
And then the only way to get to the communication part of it is to actually work around that word and give you scenarios of what that word actually means.
01:12:02.079 --> 01:12:02.319
Sure.
01:12:02.560 --> 01:12:07.279
Um, that means something to you as a care partner, a caregiver, or the family.
01:12:07.520 --> 01:12:11.359
Now all of a sudden your brain has to work a little bit harder to think of what they are trying to say.
01:12:11.520 --> 01:12:11.760
Sure.
01:12:11.920 --> 01:12:14.479
And the first thing that we try to do is help them out.
01:12:14.560 --> 01:12:14.800
Sure.
01:12:15.039 --> 01:12:17.199
Cut them off, say the word that they want.
01:12:17.359 --> 01:12:19.600
And the first thing they want you to do is stop.
01:12:19.920 --> 01:12:20.239
Sure.
01:12:20.399 --> 01:12:21.840
Let me do that for myself.
01:12:21.920 --> 01:12:22.960
It's gonna take me a minute.
01:12:23.119 --> 01:12:23.359
Sure.
01:12:23.520 --> 01:12:26.960
You know, um, Angie and I went to a um support group.
01:12:27.600 --> 01:12:34.960
Now, she's not gonna like this, but Angie didn't want to go, you know, because Angie's she's all that, she's cool, she's this, that, and the other.
01:12:35.039 --> 01:12:36.880
She's like, I don't need a support group to do this.
01:12:37.359 --> 01:12:45.600
However, when we went, voices of people that are alike say things that mean something to the other person.
01:12:46.159 --> 01:12:49.600
So it ended up with our, it started up with our journey.
01:12:49.680 --> 01:12:51.039
That's how our journey started.
01:12:51.279 --> 01:13:03.439
Because then we found out that there are people there that are having things, and Angie could ask those questions as to one main question that sticks to my mind that she asked a woman that had a stroke, and she said, Listen, there's a noise in my head.
01:13:03.520 --> 01:13:07.039
It's like a white noise, and I can't get rid of it, and that's all I hear.
01:13:07.199 --> 01:13:08.399
When does that stop?
01:13:08.960 --> 01:13:12.640
And the woman said, Well, mine lasted for about five years.
01:13:12.960 --> 01:13:13.359
Wow.
01:13:13.600 --> 01:13:13.840
Right.
01:13:14.000 --> 01:13:14.800
That was the big thing.
01:13:14.960 --> 01:13:16.640
And he said, Five five years?
01:13:16.800 --> 01:13:22.239
You know, but these are things that happen in a support group where you're able to put that out there and talk with somebody else.
01:13:22.399 --> 01:13:25.039
I had that, and that's this is what I had to go through.
01:13:25.199 --> 01:13:28.479
Um it's the same thing for the care partner, the caregiver, and the family.
01:13:28.560 --> 01:13:37.359
Uh, we had a uh practitioner talking today about the family, you know, and how important it is for that family nucleus to be there.
01:13:37.520 --> 01:13:46.319
Um that that aspect was about going to the doctor's appointments, saying certain things, because we all know when we get in front of the doctor, there's certain things that you forget to say.
01:13:46.720 --> 01:13:51.840
I don't know whether that's intentional or whether it's you just actually are in the moment and you forget about that.
01:13:52.000 --> 01:13:53.279
But there are certain things.
01:13:53.520 --> 01:14:00.159
My job as a care partner and caregiver was I was on my phone every day and I'm just noticing things and writing them down and this, that, and the other.
01:14:00.239 --> 01:14:12.000
And when I got in front of the doctor, I would wait, let Angie give her the what's going on and things like that, and then I would interject and say, Yeah, but then what about you know if you turn it over and start talking about?
01:14:12.319 --> 01:14:16.640
But it's all about that two type of nucleus of working together with with your person.
01:14:16.800 --> 01:14:18.000
I you know them better.
01:14:18.319 --> 01:14:19.359
I appreciate you sharing that.
01:14:19.439 --> 01:14:23.840
And there's some things, you know, it's funny that that you say that about the speaking.
01:14:24.000 --> 01:14:27.199
I grew up a stuttler, so I totally understand that.
01:14:27.680 --> 01:14:28.000
Right?
01:14:28.159 --> 01:14:30.960
You want to I know the word.
01:14:31.119 --> 01:14:31.680
Right.
01:14:32.000 --> 01:14:38.720
Just let me get so I and I believe my family, I think, you know, maybe they had practice, right?
01:14:38.960 --> 01:14:47.039
And so maybe that'll, you know, it's been a, you know, I've you know, I've gone through speech therapy and all that, so I've gotten kind of, you know, beyond the majority of that.
01:14:47.199 --> 01:14:49.039
But hopefully they can bring that skill back.
01:14:49.359 --> 01:15:02.319
There's there's one thing that that's a uh uh uh important aspect to this as well, and that is not everybody is a caregiver or care partner, not everybody can sit here and take that pressure.
01:15:02.640 --> 01:15:10.640
There are some that walk away, sure, you know, and then they feel bad about it at that point in time, but it's not everybody's not built to be that.
01:15:10.720 --> 01:15:10.880
Sure.
01:15:11.119 --> 01:15:13.439
So so you have to take that also into consideration.
01:15:13.680 --> 01:15:19.279
If you're not built to be that, but you have to know that your family member needs that from somebody.
01:15:19.520 --> 01:15:20.560
So let me ask you this.
01:15:20.720 --> 01:15:22.640
What would you give that person, right?
01:15:22.880 --> 01:15:26.159
Because you know, Mark Well is an extremely dynamic person.
01:15:26.319 --> 01:15:32.159
I mean, just like extremely dynamic person, a leader, leader in the community.
01:15:32.399 --> 01:15:36.960
So it's it's a it's a huge, you know, impact.
01:15:37.199 --> 01:15:37.359
Right.
01:15:37.760 --> 01:15:43.439
So how, you know, what would you t tell that care partner, right?
01:15:43.520 --> 01:15:45.199
Just, I mean, this is week two.
01:15:45.439 --> 01:15:47.119
They don't really know what they don't know.
01:15:48.319 --> 01:15:57.760
Yeah, so we, you know, I mean, of course, everyone's um, you know, hoping for the best, but again, still at the end of the day, there's been an accident.
01:15:57.920 --> 01:15:58.399
Right, right.
01:15:58.640 --> 01:16:04.880
There has to be repair, and that always takes time, no matter what, even if there's full, you know, whatever.
01:16:05.039 --> 01:16:10.479
But to, you know, if I had to, you know, you know, because I I texted her this morning, right?
01:16:10.560 --> 01:16:14.319
Hey, here's some information, you know, here's some resources, blah, blah, blah.
01:16:14.479 --> 01:16:27.359
But if I was to call her this afternoon, this evening, what would you, what is something I could say, not necessarily to bring comfort, necessarily, but to support more than anything.
01:16:27.520 --> 01:16:29.279
I think, yeah, not comfort, but support.
01:16:29.439 --> 01:16:30.720
What what what does that look like?
01:16:30.800 --> 01:16:33.199
Or what should we be giving her?
01:16:33.359 --> 01:16:35.359
Because, you know, he's in the facility, right?
01:16:35.439 --> 01:16:37.680
So he's got people around the clock.
01:16:37.920 --> 01:16:38.479
Right.
01:16:39.760 --> 01:16:44.560
But for where she's at right now, and you know, the you know, that immediate family.
01:16:44.800 --> 01:16:45.119
Okay.
01:16:45.359 --> 01:16:48.560
Um, there's one big word that you mentioned, and that's support.
01:16:48.720 --> 01:16:48.960
Okay.
01:16:49.359 --> 01:16:56.399
Um, the first example that I would give is as what we work with with uh with Angie, is to find a support group.
01:16:56.640 --> 01:17:00.479
And I don't know, um, there's stroke support groups that that are there.
01:17:00.640 --> 01:17:05.520
Uh you're if he's in a facility now, look at the boards, look at the bulletin boards.
01:17:05.600 --> 01:17:09.279
There are things up there that will tell you support groups and in the community and things like that.
01:17:09.520 --> 01:17:09.760
Sure.
01:17:09.920 --> 01:17:12.720
Um, the other thing is is is patience.
01:17:12.960 --> 01:17:15.039
It's a slow process, you know.
01:17:15.199 --> 01:17:23.359
Um I I don't know about your family uh member, but it seems like him being in a community, this, that, and the other, he knows how things work.
01:17:23.600 --> 01:17:27.039
And he also knows that sometimes you try it this way, it doesn't work.
01:17:27.119 --> 01:17:28.399
You try it this way, it doesn't work.
01:17:28.479 --> 01:17:30.399
You have so you have to don't give up.
01:17:30.560 --> 01:17:31.920
You have to keep looking for that.
01:17:32.079 --> 01:17:32.319
Okay.
01:17:32.479 --> 01:17:38.479
Um, I find it difficult because a lot of people ask me as to, well, how do you take care of yourself?
01:17:38.720 --> 01:17:41.199
And my thing is, well, you have to do some reading.
01:17:41.359 --> 01:17:45.600
You have to do, you have to look at some support groups that that can help you as a caregiver.
01:17:45.840 --> 01:17:52.000
And I went to a conference uh at a large church gathering because you know, we want to get into the community and talk.
01:17:52.159 --> 01:17:58.880
And the whole idea about it was somebody said you, the care partner and caregiver, need support as well.
01:17:59.199 --> 01:18:01.439
So that's another thing that that needs to happen.
01:18:01.920 --> 01:18:04.720
And there's some things that are online that can help you out with that as well.
01:18:05.039 --> 01:18:08.479
Sure, because I didn't realize honestly that today was therapeutic for me.
01:18:08.640 --> 01:18:09.439
You don't right?
01:18:09.600 --> 01:18:12.960
I got some information this morning on where his status was.
01:18:13.119 --> 01:18:20.479
I there was a text that came in late last night, and I'm reading it, and I'm like, my gosh, this is really serious.
01:18:21.520 --> 01:18:27.199
And so I find myself, you know, feeling some kind of way in that moment, right?
01:18:27.279 --> 01:18:28.640
And I'm like, okay, well, there's nothing I can do.
01:18:28.960 --> 01:18:29.680
It's very emotional.
01:18:29.760 --> 01:18:30.159
Yes, it is.
01:18:30.560 --> 01:18:40.800
And and so I'm trying to, you know, as a as a, you know, I guess, I don't know if it's a well, well, my my wife tells me all the time, it's so great you can be a man and you can put that over there.
01:18:41.279 --> 01:18:43.600
And I I'm I'm good at doing that.
01:18:43.760 --> 01:18:52.720
Let me let me put this right here because I there's this there's so much I can, but when you go to pick it up, then you gotta deal with it.
01:18:52.800 --> 01:18:55.920
So that this morning was one of those moments for me, okay.
01:18:56.159 --> 01:18:58.399
This is my big brother, how do I?
01:18:58.640 --> 01:19:04.319
Okay, now I gotta so I didn't know that I was gonna get therapy today.
01:19:04.640 --> 01:19:07.359
This this was a this was a level of therapy for me.
01:19:07.439 --> 01:19:24.239
Yeah, getting, first of all, information about how it happened and why it happened, and you know, even from you know, going around to the different tables around here, and and and the guy was explaining this is how a clock does this and moves here and this.
01:19:24.319 --> 01:19:24.960
I'm like, oh.
01:19:25.520 --> 01:19:26.640
Yeah, yeah, yeah, yeah.
01:19:26.880 --> 01:19:33.600
So that information, and then I can't wait to share what you guys have about the about the four quadrants of the brain.
01:19:33.680 --> 01:19:43.439
I can't wait to share that with my family so they can understand this is where, this is how this happens, or this is how it develops, or whatever it is, right?
01:19:43.520 --> 01:19:45.199
All the all the things that you guys are sharing.
01:19:45.279 --> 01:19:51.199
So again, it it it information is kind of therapeutic or healing in a way.
01:19:51.520 --> 01:19:51.760
It is.
01:19:51.920 --> 01:19:56.880
Now, here's something to be careful of getting too much information all at the same time.
01:19:57.039 --> 01:19:57.279
Sure.
01:19:57.520 --> 01:20:00.560
Because you have to have time to process it for yourself.
01:20:00.720 --> 01:20:03.439
Um, and it doesn't all happen all at the same time.
01:20:03.680 --> 01:20:03.840
Sure.
01:20:04.000 --> 01:20:10.079
Um, there are times that you I already went to that conference, I don't need to go back to that conference to go back to the conference because guess what?
01:20:10.640 --> 01:20:13.279
Something else is gonna come through and say, you know what?
01:20:13.439 --> 01:20:13.840
Sure.
01:20:14.000 --> 01:20:16.000
Now I know what you're talking about in reference to that.
01:20:16.079 --> 01:20:17.359
But I wasn't able to receive that.
01:20:17.760 --> 01:20:38.640
That's the same thing as what I was mentioning to you before in reference to um our introduction here at at the EUT Health was talking to the actual professionals and clinicians and saying, wait a minute, you know, first pause, know that that person has this going on, and they are all, like Angie mentioned, in a free fall.
01:20:38.720 --> 01:20:41.279
I'm thinking, I'm processing, what just happened to me?
01:20:41.439 --> 01:20:42.720
Why can't I do such and such?
01:20:42.800 --> 01:20:45.039
And I'm not listening to the information that you're giving me.
01:20:45.359 --> 01:20:48.960
Or they haven't assessed whether or not I can understand what you're talking about.
01:20:49.199 --> 01:20:49.359
Sure.
01:20:49.520 --> 01:20:54.000
You know, and my thing is when I get home, what's at home for me?
01:20:54.159 --> 01:20:54.319
Sure.
01:20:54.479 --> 01:20:57.279
You know, everybody has their own life and their own situation.
01:20:57.359 --> 01:21:02.319
Um, and that's something else that's not what's now being assessed because people are talking about it.
01:21:02.880 --> 01:21:07.039
But early on, a few years ago, it wasn't being assessed as to what does Terry have?
01:21:07.439 --> 01:21:11.199
Can he get up them steps that he needs to get into to get into his house?
01:21:11.600 --> 01:21:16.560
And if he can't, then there's an alternative, and he might not be acceptable to an alternative.
01:21:16.800 --> 01:21:16.960
Sure.
01:21:17.199 --> 01:21:17.439
Right.
01:21:17.520 --> 01:21:21.279
So all of that falls into the concepts of you sharing that.
01:21:21.439 --> 01:21:27.439
Uh because even now, I was thinking, okay, at what point do I share any of this information?
01:21:27.520 --> 01:21:46.960
I have pamphlets, I have all kinds of things, but at this point, I'm in my mind, I'm thinking that, okay, we just have to get to base to where it's get to base first before start um, you know, overloading with all these nice little gadgetries.
01:21:47.279 --> 01:21:47.359
Right.
01:21:47.439 --> 01:21:50.159
Oh yeah, this is nice that it's that never ends up on the coffee table.
01:21:50.800 --> 01:21:50.960
Exactly.
01:21:51.439 --> 01:21:52.720
I am gonna share that, man.
01:21:52.800 --> 01:22:05.600
This has been, like I said, I I came down here to network and try to drive more business, but I I I quickly I put my networking business hat down and picked up my, you know what?
01:22:05.680 --> 01:22:12.640
I think this is a learning moment for you, Terry, so you can, you know, help what's going on.
01:22:12.800 --> 01:22:19.119
Again, I had I had no idea what what I was getting into, but I'm so glad I met you and your wife.
01:22:19.279 --> 01:22:20.640
Man, I love your story.
01:22:20.800 --> 01:22:21.199
Oh, okay.
01:22:21.520 --> 01:22:24.560
Um, I'm glad you guys are doing this because I was on my way out.
01:22:24.800 --> 01:22:25.760
I'm like, right.
01:22:26.880 --> 01:22:29.439
I saw you walk by and look in, like, what's going on in there?
01:22:29.600 --> 01:22:30.960
And then you just walked in, you know.
01:22:31.039 --> 01:22:32.720
And I was like, did you have an appointment?
01:22:32.800 --> 01:22:35.920
No, I just walked in, I saw this happening, and that's divine.
01:22:36.319 --> 01:22:37.760
That's divine, welcome in.
01:22:38.079 --> 01:22:40.560
I appreciate that because we don't know.
01:22:40.720 --> 01:22:40.880
No.
01:22:41.279 --> 01:22:53.760
And the fact to have someone who's been and walked that journey and candid because here's right, we know of people who have I know of people who've had strokes, right?
01:22:53.920 --> 01:22:54.079
Right.
01:22:54.399 --> 01:22:56.319
I've never heard what I'm hearing now.
01:22:56.479 --> 01:22:56.640
Okay.
01:22:57.039 --> 01:23:02.399
Because I don't know if it's because they were not in a position to share it.
01:23:02.560 --> 01:23:04.000
Maybe we didn't ask.
01:23:05.279 --> 01:23:10.399
So, listen, I do have a quick question in reference to some caregiving.
01:23:10.640 --> 01:23:12.479
And we have Mr.
01:23:12.560 --> 01:23:15.520
Charles Cawthorne here, my husband and my care partner.
01:23:15.600 --> 01:23:19.199
And for those that do not know, I had two strokes in 2017.
01:23:19.359 --> 01:23:29.680
I was left with aphasia and frontal lobe uh brain damage, and it was his job to, as things got flipped over, he had to pick up the pieces.
01:23:29.840 --> 01:23:30.640
So we have Mr.
01:23:30.720 --> 01:23:32.000
Charles Cawthorne and Dr.
01:23:32.079 --> 01:23:33.359
Portia Davis here.
01:23:33.520 --> 01:23:36.159
And so, Charles, I'm gonna ask you a question, and Dr.
01:23:36.239 --> 01:23:37.840
Davis, I'm gonna ask you as well.
01:23:38.000 --> 01:23:41.520
What do care partners need that they really get?
01:23:45.760 --> 01:23:54.319
Um, the in reference to the question of some of the things that we need, uh, I happen to be um I work for an insurance company.
01:23:54.560 --> 01:24:01.119
So once the stroke happened, I knew that there were certain things that needed to be taken care of uh in reference to that.
01:24:01.199 --> 01:24:12.560
And I know from an insurance perspective, after your benefit period ends, 30, 60 days, whatever it may be, you your time is up uh for the uh for the next year or so.
01:24:12.720 --> 01:24:49.840
Um but there are other things that need to be taken care of at that point, and that what we won't get into that journey, but Angie and I had that journey where we were able to go and and work with uh speech language pathologists, uh be involved with their uh learning labs, and because of knowing that the spech language pathologist has to learn what to do with people that had a stroke and aphasia, and you as a uh I don't want to say test subject, but you as a subject working with them, you're getting your therapy without the insurance being involved with it.
01:24:50.000 --> 01:24:54.560
And that's where we're trying to get that message out to a lot of people saying there is hope.
01:24:54.880 --> 01:25:02.399
It's not well talked about, but that's why we're here, and that's what we're trying to give out as far as that information is concerned.
01:25:02.560 --> 01:25:13.359
So, from a uh perspective of a practitioner, um, what do you and how do you think in helping us or helping me to continue on with the struggle?
01:25:13.439 --> 01:25:20.479
Because as you mentioned, uh while you were talking with Angie, it's about the family, the family unit being there together to say things.
01:25:20.640 --> 01:25:36.720
But sometimes those people that are within or or that are the uh patient at that point in time forget to say certain things to the doctor, and you as a care partner or family member bring out the list.
01:25:37.920 --> 01:25:39.520
You know, that's well, what about this?
01:25:39.680 --> 01:25:41.520
This happened three weeks ago and stuff like that.
01:25:41.840 --> 01:26:00.720
I I believe from a clinician standpoint, it's important to take a step back and understand that yes, the patient that's in front of me in this distress, duress state of not feeling well, or just maybe can't for whatever reason obtain all the information that I am saying, no matter how I'm saying it.
01:26:00.880 --> 01:26:06.399
I I need their person to be in the room and I need to talk to both at the same time.
01:26:06.560 --> 01:26:12.640
And that's the message I think that's still, even though it's simple, I don't think it's reaching our communities.
01:26:12.800 --> 01:26:21.119
I don't think people understand that power in going to every visit or as many as you can, writing the list, asking the questions.
01:26:21.279 --> 01:26:24.560
It's not enough to just send the person to be on the phone.
01:26:24.720 --> 01:26:27.920
People can't take off the work, you know, they miss work, they miss a check.
01:26:28.159 --> 01:26:30.399
Be on the phone, but be as present as possible.
01:26:30.560 --> 01:26:38.079
And for clinicians to not become frustrated, build that into your time in your visit with your patient.
01:26:38.479 --> 01:26:47.439
You want your patient to have the most positive outcomes possible, is gonna involve the person that is right there with them with respect to their care.
01:26:47.600 --> 01:26:49.119
Um, I love the insurance part.
01:26:49.199 --> 01:26:51.119
I think that's something that a lot of people don't know.
01:26:51.199 --> 01:26:54.640
And I would be curious to explore spaces where that could be shared.
01:26:54.960 --> 01:27:01.760
So, you know, immediately I think about churches and social groups and community groups, and there's there's tons that are here within the city of Houston.
01:27:01.840 --> 01:27:06.960
I work with a couple, they're always doing programming to bring information to not just seniors.
01:27:07.039 --> 01:27:10.479
We see a lot of senior programming, but to people at large.
01:27:10.640 --> 01:27:13.199
And I think that is a piece that's critical.
01:27:13.359 --> 01:27:18.640
Um, people don't understand their benefits, you sign, you sign up, you got this big old packet, and then that's it.
01:27:18.800 --> 01:27:27.039
But then something happens and you're scrambling through trying to understand, well, what do I have at my you know, disposal to be able to help my person?
01:27:27.199 --> 01:27:29.279
Um, so that's another great idea.
01:27:29.439 --> 01:27:43.600
And partnering with people like Houston Medical Forum, there are other agencies, you know, but to be able to bring that conversation up alongside the mental health conversations, the physical health conversations, the nutrition conversations.
01:27:43.760 --> 01:27:49.119
I think you just kind of struck a little goal, and I'm actually feeling like you should speak more than me.
01:27:49.279 --> 01:27:54.079
But but um to be, you know, just efficient and succinct.
01:27:54.319 --> 01:28:06.640
I I love the lens that you are bringing to this conversation, and I I Oh, that it gets plugged into this uh podcast because I think it's really important to hear.
01:28:06.800 --> 01:28:12.399
It just makes me, if I were listening to this, I would have stopped and probably replayed this session a couple of times.
01:28:12.720 --> 01:28:15.520
Just to be playing, just need to be like, you know what?
01:28:15.840 --> 01:28:17.520
These are things I need to look into.
01:28:17.600 --> 01:28:18.479
I need to dig into.
01:28:18.560 --> 01:28:30.399
And where, what resources am I aligned with that I can pull in to partner so that we can amplify these messages or help fill gaps of you know unmet need with knowledge and experience and all of those things.
01:28:30.560 --> 01:28:32.399
So yeah, this is this is great.
01:28:32.479 --> 01:28:36.319
I if I was still in my academic days, I would have you come speak to my students.
01:28:36.560 --> 01:28:36.880
Okay.
01:28:36.960 --> 01:28:37.359
All right.
01:28:37.520 --> 01:28:39.039
I think those are the things that we'll help.
01:28:39.680 --> 01:28:40.000
Thank you.
01:28:40.159 --> 01:28:40.800
Thank you so much.
01:28:40.880 --> 01:28:41.600
That means a lot.
01:28:42.319 --> 01:28:46.000
I get the little chills and I'm like, oh, you know, there's a story.
01:28:46.159 --> 01:28:46.479
You know.
01:28:46.640 --> 01:29:10.399
So and and and Angie does uh want to expand on uh me being more on the podcast and talking about care, partnering, and giving because there's a second side to that, and that is well, you're not only taking care of the person that that has had this stroke, but you also need to pay attention to yourself because there is a fear that I always have, like the next what happens if something happens to me at that point.
01:29:10.800 --> 01:29:11.039
Exactly.
01:29:11.279 --> 01:29:12.159
It's my fear too.
01:29:12.399 --> 01:29:12.720
Exactly.
01:29:13.039 --> 01:29:13.439
Lord knows.
01:29:13.520 --> 01:29:14.720
I don't know what my medication is.
01:29:15.439 --> 01:29:22.560
You have to plan a good financial planner will work you through planning so that the what-ifs you have a plan in place.
01:29:23.039 --> 01:29:26.319
Flip to your book and you go to that tab, and this is what you execute.
01:29:26.479 --> 01:29:27.600
It's the same thing for your health.
01:29:27.760 --> 01:29:27.920
Yep.
01:29:28.319 --> 01:29:38.720
If there is no difference, it's the same thing for her health, your health, and and and whoever you know would look in on you or your your trusted inner circle, they need to be privy to that plan.
01:29:39.039 --> 01:29:44.560
You just said something because that was one thing that we've coined, we thought we coined the phrase, but we have a circle.
01:29:44.800 --> 01:29:55.199
A circle of those friends that know you and know what happened and can follow up with things when I'm not available, like I'm still working and I have to go to work, they can check in on Angie.
01:29:56.479 --> 01:29:58.960
Here's another connection I appreciated.
01:29:59.199 --> 01:30:13.680
Years before this centennial celebration, uh, the Houston Medical Forum partnered with the University of Houston to preserve the stories of black physicians in this city.
01:30:14.560 --> 01:30:21.840
And they called the project to bear fruit for our race.
01:30:22.960 --> 01:30:27.119
And among the physicians who supported that project was Dr.
01:30:27.279 --> 01:30:28.399
June Coleman.
01:30:28.880 --> 01:30:31.279
I had the pleasure of speaking with Dr.
01:30:31.520 --> 01:30:38.640
June Williams Coleman in Houston, and she had some practical advice about preparing for medical appointments.
01:30:38.880 --> 01:30:47.119
You know, sometimes the most viable information is the simplest thing we can actually use.
01:30:50.399 --> 01:30:56.880
So when we talk about healthcare, I think it's a kind of over a continuum.
01:30:57.119 --> 01:31:04.640
And we are blessed now that we live in a time where we have these handy devices that we call phones, but they're journals, they're all things.
01:31:04.880 --> 01:31:20.000
And so one of the things I encourage when I was practicing my patients and now just friends and family is when something comes up, note it, put it down because you will not think of it at the time of your appointment, even the day of it.
01:31:20.159 --> 01:31:32.399
And as you keep a journal and you ask your family and friends to kind of alert you when something's going on, then add that to the list or have them put that on a list and send to you.
01:31:32.640 --> 01:31:46.319
And so I think when you go in there with a clear idea, like I said, over a continuum of what the questions and concerns are, it helps make a uh a better appointment.
01:31:46.560 --> 01:31:54.000
The other thing is that post-COVID, most physicians are okay with you having someone on the phone.
01:31:54.239 --> 01:32:02.640
And I will say, if it is something serious, never, if you if you don't have someone who can go with you, have someone there on the phone.
01:32:02.880 --> 01:32:08.399
So I frequently, for friends and family, since I work from home, I am gonna be that person.
01:32:08.479 --> 01:32:17.840
So I can text them, I can ask them, uh, you know, I need you to ask the physician this question because this is salient to what's going on.
01:32:18.079 --> 01:32:33.039
And I I think those things really help give uh a better outcome because what happens is if we hear news that we're not ready to receive, from the moment we hear those that news, we don't remember anything else.
01:32:33.279 --> 01:32:36.560
So when you get home and your family says, Well, how was the appointment?
01:32:36.720 --> 01:32:37.920
Oh, everything was good.
01:32:38.159 --> 01:32:40.720
And that's not it, that's absolutely not what we say.
01:32:40.960 --> 01:32:41.199
Right, right.
01:32:41.520 --> 01:32:46.319
So you need to have someone there who can just be neutral.
01:32:46.560 --> 01:32:50.399
So it's almost like a kid coming home from school talking about, what'd you learn today?
01:32:50.800 --> 01:32:51.279
Nothing.
01:32:51.520 --> 01:32:51.920
Right, right.
01:32:52.159 --> 01:32:53.199
What you mean, nothing?
01:32:53.359 --> 01:32:54.640
What you mean you ain't learned nothing?
01:32:54.720 --> 01:32:58.640
You said for seven hours and you ain't got nothing new to tell me, right?
01:32:59.119 --> 01:32:59.520
Yes.
01:32:59.760 --> 01:33:07.840
So um the theme for this year is ensuring our living legacy, elucidating the anime blueprint for generational health.
01:33:08.159 --> 01:33:09.039
It's a lot of words.
01:33:09.199 --> 01:33:18.479
But the whole point is to really march out or mark out the plan for the black community's health.
01:33:18.640 --> 01:33:24.159
What do we need to be doing in order to not only survive right now, but to thrive?
01:33:24.399 --> 01:33:32.640
And really thinking about that across our generations because the investments we make in health now will impact the next generation.
01:33:32.960 --> 01:33:40.560
So I'm a pediatrician, I start with the kids, but I recognize you know, a mom's health, a grandmother's health affects the child.
01:33:40.720 --> 01:33:40.960
Yes.
01:33:41.039 --> 01:33:46.239
So it's important that we work at every single level to make sure that our community can have the best health.
01:33:46.399 --> 01:33:50.479
I only get to be president for a year, so we're gonna move fast.
01:33:50.880 --> 01:33:59.279
We're hoping to have a summit to really make sure that our community partners are part of that as well, because we recognize it is not gonna be doctors only.
01:33:59.680 --> 01:34:03.680
What do you wish every patient knew before leaving the hospital?
01:34:04.000 --> 01:34:09.279
That they are not helpless, that they are also participants in their active care.
01:34:09.439 --> 01:34:15.119
It's not about just giving you a pill, but it's also engaging in how you live your life day to day.
01:34:15.279 --> 01:34:19.840
And so it's a partnership with your doctor and yourself that we can help get you better.
01:34:20.079 --> 01:34:21.760
We all have roles to play.
01:34:22.640 --> 01:34:26.079
Well, I just want to leave us with it's always hope.
01:34:26.399 --> 01:34:27.359
Tomorrow.
01:34:32.000 --> 01:34:34.880
I didn't look at your bracelet, but it is hope.
01:34:35.119 --> 01:34:36.399
It is every day.
01:34:36.640 --> 01:34:37.279
Every day.
01:34:37.439 --> 01:34:37.920
Every day.
01:34:38.159 --> 01:34:43.359
My niece made this for me um after my stroke, and so I wear it.
01:34:44.640 --> 01:34:49.760
So I came to Houston expecting to meet some doctors and learn some things.
01:34:49.920 --> 01:34:52.960
I mean, of course, it's a conference, this is what you do.
01:34:53.199 --> 01:34:54.000
And I did.
01:34:54.239 --> 01:34:58.079
But what I came home with was so much more.
01:34:58.239 --> 01:35:09.359
I heard stories about people who opened doors, and when they got through that door, they left a little something so the door would not close behind them completely.
01:35:09.680 --> 01:35:15.680
You know, I heard that I heard about physicians sharing information.
01:35:16.399 --> 01:35:23.359
They genuinely wanted their communities to hear and to understand.
01:35:25.199 --> 01:35:41.600
You know, we met survivors and care partners talking about things that always don't get discussed, and I watched a man walk into a room looking for one thing and leave with something he did not even know he needed.
01:35:44.720 --> 01:35:46.560
That's the power of conversation.
01:35:47.199 --> 01:35:54.720
I want to thank the Houston Medical Forum for welcoming us into its centennial celebration.
01:35:54.960 --> 01:36:01.279
I want to particularly acknowledge the HMF's president, Dr.
01:36:01.600 --> 01:36:06.479
Shiadika, along with the past president, Dr.
01:36:06.720 --> 01:36:12.560
Angel Sharif, and the entire centennial planning team.
01:36:12.880 --> 01:36:18.720
Um, they were insanely awesome and just made me feel really welcome.
01:36:18.880 --> 01:36:20.319
They really looked out for your girl.
01:36:20.479 --> 01:36:29.760
I also want to thank every physician, researcher, and medical student, Albert, I'm talking to you, and every survivor, uh, especially the aunties that shared with us.
01:36:29.920 --> 01:36:34.319
Uh I gotta hear from her again, okay, because we didn't finish talking.
01:36:34.640 --> 01:36:37.920
We recorded so much more than what you heard today.
01:36:38.159 --> 01:36:51.439
So throughout this season of Brain Friends and next season, we will return to these conversations with extended interviews, more science, and more stories that deserve to be heard.
01:36:52.000 --> 01:37:00.560
This was Centennial Voices powered by conference voices featured on Brain Friends the podcast.
01:37:00.880 --> 01:37:03.359
So, I'm Angie Cawthorn.
01:37:04.960 --> 01:37:14.640
Keep learning, keep asking questions, and remember, sometimes the most important thing we can do is listen.
01:37:16.159 --> 01:37:24.560
So until we meet again, take care of your brain, take care of your body, and take care of each other.
01:37:25.520 --> 01:37:26.479
Peace, y'all.
01:37:38.960 --> 01:37:41.760
We hope you enjoyed this episode of Brain Friends.
01:37:42.000 --> 01:37:48.000
Please leave us a five-star review on Apple Podcasts or your favorite streaming platform.
01:37:48.319 --> 01:37:51.439
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