Episode Summary – "YOU CAN’T CHANGE YOUR LIFE – UNTIL YOU CHANGE YOUR MIND” in Episode 52 of the Shining Brightly Podcast show (links in the comments), titled, “LOSING MY MIND - FRONTOTEMPORAL DEMENTIA (FTD)” please meet my very special guest, Kris Bowring. He is a son, husband, and father. bass player, VP and business executive, motorcycle rider and SO MUCH MORE. He lived with ME and the MYSTERY of what was going on with his health. The secret he was told to hide. Finally. He was diagnosed after 18 long months and stuttering lead his doctors to finally figure it out, he has FTD. This quiet and hard to diagnose disease has severe symptoms of aphasia (loss of the ability to understand or express speech, caused by brain damage). Hollywood actor Bruce Willis (caregiver angel - wife Emma) was diagnosed with FTD after 3 long years. Hear Kris’s story for the first time on a podcast of how his life has been changed and he is living with FTD and what he has learned. Join me to learn about Kris’ courageous story (caregiver angel – wife Cassie). Please listen, download, review and share this incredible episode.

Mentioned Resources

Kris Bowring - LinkedIn

https://www.linkedin.com/in/kristenbowring/

Association for Frontotemporal Degeneration

https://www.theaftd.org/

National Aphasia Association

https://www.aphasia.org/

National Institute of Neurological Disorders and Stroke

https://www.ninds.nih.gov/health-information/disorders/frontotemporal-disorders

About the guest –

Kris Bowring, and I have FTD. Currently, I have a Logogenic Variant PPA. My brain damage is in the Frontal, Temporal, and Parietal Lobes of each with various damage. I will be very honest, authentic, and fair. I felt that the Global FTD Awareness Week was the perfect time to tell my short story. Me and the mystery. I was a Vice President of Innovation and Development, it was a decent job, but I wasn’t the me, I knew I should be. My wife knew something was wrong, at one point we thought it was Meniere's disease symptoms of Vertigo, tinnitus, and hearing loss. Still, I worked harder, and she watched while I began to be slightly paranoid. I left the company. Shortly after the job loss, I decided to have an outpatient surgery procedure since I had time. My time with the Doctor showed no illness or anything else. I was PERFECT. She asked, “If there were any other questions,” and my response was “I’ve heard about long-term COVID-causing stuttering, I’ve never stuttered.”  She must have noticed as well, and she scheduled a neurologist immediately. Seemed every test required blood work. Our doctor was very aware when I told her I was stuttering, I have never stuttered in my life, but it is a big symptom. We met with the Surgeon, several tests, and two MRI reviews. Then I was sent to a Neuropsychological Therapist and took five hours of crazy testing brain testing and puzzles. My PET Scan was on Valentine's Day 2023 and the results were in, I have Frontal, Temporal, and Parietal damage. All this work on and around me, the doctors, nurses, PA’s all did great work. The teams knew what to do. It took only 10 months to have the complete diagnosis. This is not what so many don’t experience, 3.6 years is way too long. We simply need to get the right people in place to understand, more people in the system need to know more. Terminal? Yes, it is. How long do I have, the answer is we don't know. During that same period, we needed to manage the insurance, financial resources, and the government for disability services and state services. There is a cost to all the needed Services. There is tremendous pressure, time, and anxiety. The anguish FTD creates, in all the mess, all the anxiety, all the anxious worry at 3:57 AM. FTD won’t reveal what will happen, what are the likely deficits in functions coming, how much time, and the anger. This is where I privately cry, it will break any man or woman. This is the end of you, this is the end of your ego, and you crash into your broken default behavior. It’s just you. Alone and enormous.

The Quiet did Come. We had a terrible 2022 year, but then two angels came to my battle-worn ego. They rescued me and turned me into a Yes-Man. Are we happy, in general, maybe, we have our moments, and those moments are creating more. I do have Miracles, and I walk beside them every day, and I cannot believe the caliber of my miracles, and friendship. Do I have a worthy purpose? Yes, and working, FTD is a known unknown, and many doctors, neurologists, and neural surgeons need to get known. Corporations need to know the people who directly interface with the Patient.

About the Host:

Howard Brown is a best-selling author, award-winning international speaker, Silicon Valley entrepreneur, interfaith peacemaker, and a two-time stage IV cancer survivor. He is also a sought-after speaker and consultant for corporate businesses, nonprofits, congregations, and community groups. Howard has co-founded two social networks that were the first to connect religious communities around the world. He is a nationally known patient advocate and “cancer whisperer” to many families. Howard, his wife Lisa, and daughter Emily currently reside in Michigan, and his happy place is on the basketball court.

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#brain #damage #degeneration #FTD #awarenes #aphasia#healthcare #family #care giving #quality #life #motivation #education #inspiration #podcast #listen #download #share #shiningbrightly

Hello, it's Howard Brown. It's the shining brightly

show. Oh my goodness. We're hitting the fall. It's shining.

The leaves are dropping some places. I am so happy to have

you here your Maestro with the mic. I've got an incredible

person. Guest. Oh my goodness. Shout out to John Rapoport and

introduce us. Kris Bowring. Welcome to the shining, brightly

podcast show. How are you?

I'm good. I'm good.

I'm so happy to have you. We were introduced in

the mid summer. And Kris is now back to share a really important

message and story and one of inspiration. One of a lot of a

lot of stuff he's been through. Okay, and, and some hope so,

Kris, it'll take me back and introduce, you know, before

again, this, this all happened. And I'm not saying it for a

reason. It's not a mystery. We're going to talk a lot about

what happened to Kris. But take me back to Kris before what

happened to you and tell me about that Kris.

Kris before was a vice president of innovation and

development for big corporations. And I loved being

in corporate America. And I loved all the things that you

get when you're doing well in corporate America. But I came

into I went to the doctor for some some I actually

talked about you. You're a husband, you're a dad.

Yeah, well, okay. Well, let me it goes better than

that. So I'm, I'm a father of three wonderful, very smart

kids. Sophie, Luca, and Sadie, my wife is she's she's been

watching me and in babysitting me. And she and she always is my

sounding board for everything that I was doing. And it's a

great relationship. Really look fun. We love the desert and land

and everything like that. I also am a bass player. And I played

live and for the record companies and stuff like that,

and those things, and I was a former triathlete. So I was

doing triathlon, triathlons. And I have 42 races that was in and,

and I kept trying to keep my, my, my, my shape. But, but it

were, it was really good. We were in our, our time to have

the kids and be with them. And then and then take them with us.

And, and, and because they're old enough, like so they can go

do their things and go on under. But then I came out of that

doctor's office and I had a real bad piece of news.

you got the awakening. So now transitioning

to you and your mystery me and my mystery, as you call it.

Me in the mystery. Well, you go when you when you

are when you have FTD and we'll talk about how and what and what

it does. It's a secret. People will telling me, Don't tell your

employer that you have this. And that was odd to me. Because when

you are hiding something you are losing your mind. Because you

think that somebody's going to find about find it about you

that you have this brain disorder, and you're the

Villious president, maybe I can knock him off or something like

that. But I didn't like living with this illness. And the more

and more I was working with it, the more and more I was talking

to people, the more and more that I studied about what is

going to happen. I couldn't I couldn't bear. And so last week,

I said I'm out. I'm all out. This is what's happening to me.

And this is what's going on. So,

so pronounced pronounced. It's frontal.

Temporal degeneration, correct.

Yeah. Right. So temporal dementia. Yeah.

And so, right, you came out it was it was basically

the frontal temporal degeneration and brain damage

month and you came out and told your story in a couple of

different ways. And you've been through the wringer. Man, and

you are doing great. So I get it, and we are on the same.

We're aligned there. So take us through, because you didn't

really know what was happening to you. But you went into a

doctor's appointment and you were you were stuttering, right?

Yes. So that's one of the big ones in in the

flavours of symptoms. And I had no idea. And it was the, the

grind that I had, you'd like Kris, you need to go here, you

need to go here, you need to go to here, you need to do this,

you need to do all this. Here, we got to go put you in, in the

the puzzles they gave me they were they were actually tests

that I was taking to see how much of my brain has been

affected. And, and in one after the other and they were

required. And then all of a sudden they're saying, Hey, you

may be can't drive your car anymore. And I'm like, How do I

get the test to tell me that. So I still can't do it. But there's

limits on it. There are I cannot drive to this day with my kids

in the car. And so I have to take, I get the car all the time

has to be empty. Because there there there could be something

that would go haywire and have an accident and stuff like that.

So. So those were done. But now the mystery of it is it's gone.

I know what it is. I know where I'm going. I know how much I do.

I do not know how much time I have, because nobody does. And

they don't know when it came in as well. So this could have this

could have been four years old. But but now I feel like I'm

settled. And the mystery is, is now because of you right now.

You're my guy. For the first first time. I've never done a

podcast.

I know. But I'm glad I am because we're going to

tell your story. And we're going to tell how through it all.

You're shining brightly. So there is you have a famous

brother of former Hollywood Bruce Willis that has an

aphasia. And so he's bringing some more awareness to this

because I have to tell you before I met you this summer,

I'd had no idea about this degeneration and the brain

damage and, and all that. So you know, we got a little bit of

Hollywood here shining on it as well, because he's going through

what you're going through.

He is and Emma is so on it. Like a little bit. I'm

trying to chase her around, because she is just always

there. And she's had some bad, bad news all along. Now he but

Bruce, the reason it is so bad for him right now is that it

took them three and a half years to give them a diagnosis. For

me, I got mine in 18 months. And they are and people who have

done that have said we How did you get all these things fast?

When on my letters came out? They were saying how did you do

that? Well, how do you do this? How do you get to, you know,

disability, and just there was there was 5000 people that were

emailing me and thanking me and stuff like that. But there's a

there's a lot of work to do in this vein of brain disorders.

Yeah.

And yet so you So Emma is Bruce Willis, his wife

and caregiver and your wife remind me of her name? Cassie,

Cassie, they are angels on this earth because my wife Lisa, and

for cancer one, my parents, Nancy and Marshall Brown, they

are angels because they have to basically look after us. Because

we have trouble looking after ourselves when we're going

through the war and through this tornado, and all that sort of

stuff. So I agree. It's something and so for you to be

able to shed light to this and I will tell you there will be lots

of links on the post and in the show notes. So for people to

want to be able to learn and potentially even help out, you

know, on this from the different organisations, the aftd.org and

all that as well. So take me through you basically went from

stuttering at your general doctors to a neurologist. Right.

Right to it. Yeah. And what they were just basically doing every

sort of test they could on your brain Right and giving you these

puzzles as well and trying to figure out the extent of the

disease.

Yeah, it was, it was quite a ride. But we finally

got to our pet scan. And the PET scan made it really, really real

for me, because I could see what's going on in the brain, in

my brain. And so, so it was it was weird. You know, but I'm

always kind of a, I'm optimistic of everything. And, and I like

hanging around with optimistic people. But I looked at that,

and I not only have it in frontal in, on my forehead, and

then the temporal, all of them, all four have damage, but I also

have parietal. And they say, Kris, you're one in a million.

The you you've got, you've got more damage than most will have.

And, and that's, that's when it, it really hit me and really hit

me that I was doing things very, very, very wrong. I was still

angry. Just so angry. And you know, when when we had to do

some things that it felt like I went, I have to sell my car. I

love that car. Oh, and I have to I got a motorcycle too. And I

love them your motorcycle, and it's gotta go. And then I was

like, Gee, I hope we can't I hope I don't have to sell any

basis. But the but I was everything that was kind of what

I would tell you, the manhood was stripped away. And, and I

had to get I had to get help to, to help me not curl up and, and

get in a corner and do nothing.

Yeah, so I love the fact that you're, you're

you're telling your story, you're coming out, listen, it is

okay to be angry, it is okay to be depressed, it is okay to

isolate for a short period of time, just to take it all in.

Because 18 months to diagnosis. Bruceville is three years of

diagnosis. That seems like an eternity to me. And I love the

fact that you're sharing, and people are actually coming to

you, one applauding that you're coming out and telling you

because they have their stories too. But you're gonna you're

helping so many now, your toys are getting taken away. That is

part of your manhood your motor. I hope they don't want to take

your guitar, your bass guitar away from you, I Oh, I hope that

you can even hold that even if he can't play it very well.

Yeah, man, that feeling. And so I hope you'll be able to

preserve all that. And so you know, your kids now, you know,

everybody knows, your wife knows. And, quite frankly, if

you do Google the diagnosis, it gives you a your lifetime is

being shortened for sure. And mine too, you know, with stage

four cancer diagnosis, as well. And you got to make some

decisions here now. And you know, your wife is basically got

to watch you and and all that as well. And so this is it's tough

mentally, to be able to adjust to being, you know, the man of

the family and being also independent as well, some of

your independence is taken away, as well. But I gotta tell you,

man, you're doing great. Today. There's a lot going on here.

You're talking, it's emotional, and all that sort of stuff. So

tell me about you know, your mom said you're the patient patient.

Because you waited so long here, go into that, because you've

been through a lot.

Yeah, it's it is a lot. But it I think so you and

I, you know, there was something about my team that made it moved

fast, faster. And I was I was I thought that was hard as hard to

wait. But, you know, but you can I was slowing myself down to

retire because that's what my life was saying. You need to

retire and just go work out every morning and do all these

other things, which I do because that's part of the symptoms, to

err on the symptoms. Like go get a workout, read, play a gig

guitar, and no alcohol. And that was that was a I was so sad to

see Alcohol go. But now I've been sober since a the since

last May and everything like that. But the the, the two

breaking moments were me trying to me trying to talk to my kids

about this. And it was all tears. And then And then shortly

thereafter, to friends of mine from in Omaha where I go, I went

to number I was in Nebraska college. And these are my two

best friends, they came to me. And my wife had organised a

brunch, and they came walking in, and I didn't even think and

I looked at it, and they were both there. And they're twin

brothers. And they said, We're here to take you up to Omaha,

we're going to go to the All Star game they got. And they

had, they had two parties, for me to be with all of the people

that we had in, in Omaha, just like, fantastic. That helped me

become much, much more. Because there's nobody for me to talk.

You know, but the and that was all the talking, we did all this

stuff. It was great was wonderful. And now I say that

they're the ones that make made me a yes, man. So if you want me

to do something with you, I'm gonna do it, I'll do it. I'll go

and Cassie saying, Please don't jump out of a plane, or anything

like that.

But here's the deal. So you went from a little

bit of isolation, okay, and you hear about Bruce Willis. And now

you're in contact together, and you found your people, you found

your people that you actually know, and you're bringing

awareness to this, you're doing what you can do. And also you're

deciding to get help from others, you can talk to people.

So I know that when I talk to other people in the midst of

their cancer battle, you know, we have this understanding,

okay, because we're going through it. And listen, everyone

has to fight their own battle. But still, when you actually be

it becomes a team sport, it actually does become a little

bit easier. So you don't have to carry all that weight on you.

And I have to tell you, that you're you're hanging in there,

and all you can do every day is get out of bed and see what you

can accomplish that day. And you you are doing that. And you have

amazing, you know, angel on Earth, Cassie, and your kids,

and you're doing it and so this is why we decided to do this

podcast today. And we don't know what life's gonna throw at us.

But you're doing whatever you can do in the in the time that

we have. And and you're gonna motivate, educate and inspire.

And that's what I love about you, Chris, is that you've

decided to do that as well. And so take me through of what your

plans are now, what do you what do you see, in the short term

coming for you you want to accomplish?

Well, I'm going to try and storm as many people in

corporate America about what does this because above and

before anything, this this disease is attacking so many

people in so many different ways that it they called it the quiet

a long time to it but but you cannot do that the best thing

should be okay, I have it, I go to HR or something like that, or

you ease your way out of your job. So that you can have,

you're going to be asked to do that to get some of the things

that will be much more beneficial in in your life. And

then the other thing is, when if there if you keep in a mystery

and stuff like that, it makes you anxious all night, not at

357 in the morning, you're taught you're you're you're

walking, you're still walking the thing. And then what I found

was that it was alone and enormous. And it was so hard not

to get just angst and but but it did. Then the thing starts to

started getting better. And then the things are doing helped me

kind of get through the night and and be the dad, and you

know, my kids, if you'll see them sometime. And then they

will, they will, I will, I will make jokes about what I've got,

like, every time I can't remember something, I'm like,

Well, you know, I gotta I gotta FTD password on that, but just

trying to, to live the life. So the people also when it happens,

you, you don't want to let your your husband or your wife go

into the corner. They still are there. They they and in my case,

I still got the voice. I won't have it in. But I don't know

what how long I've got. So I'm trying to talk to people about

this. And just about that, this, this, this is life saving work.

I have to tell you, Chris, so I love that

you're the crusade that you're on to inform, make aware

corporate corporations, their HR departments, so that people can

understand that. Because so they can make the empathetic decision

to be able to retire you gracefully or still support you.

Because, listen, you're, you still have so much more to give

and to accomplish. And so I have to tell you, I have chemo brain,

which is a form of PTSD. All right, I sometimes do make a

joke about it. But it's not a joking matter. Okay, I can't

remember I can't remember names anymore. And I was a Spitfire

for names and all that. And, and what I see you doing, which I

think is so important is that and, and I might do this in

other disease communities. But we have a little mantra in the

cancer world. And I'm sure you'll carry this forward and

the FTD world as well as kfg. Okay, we got what we got, and

you got to keep effing going without the swear word, right,

keep everything going. And that's all you can do until your

voice is taken. And then you'll do it by written word, or you'll

do it by some other way, you'll get the message out. And that's

all you can do. So it's just so important. And I love the fact

that I'm your first podcast, because there'll be all these

people trying to contact you and, and you're going to help so

many. And that that does that give back is so important for

you. So what I want to do now, is I'm going to put on my

sunglasses, all right, because Chris, you are shining brightly.

And I want people to say how should people get in touch with

you? And give me a final message that you want to tell my

audience and the rest of the social media world? What do you

want to talk about? Well, well, good touch you.

Yeah, well, to reach me just do my Gmail,

Gmail, because I'm, I'm more attuned to that, then and, and

then LinkedIn. So LinkedIn is a good one, because I'll be able

to do a lot much much more and, and and handle it. One

way. So Chris, I'm gonna put, I'm gonna put your in

the notes and the social media, I'm going to put your Kristen

dot bow ring at Gmail, and then I'm going to put your LinkedIn

address, so people can just click on it, and they can get in

touch with you. And I think that's beautiful. And then

you'll be able to get them information about the aftd.org

the aphasia.org and connect them up. And I it's such a beautiful

thing. So what's some message or messages you want, you want to

leave the listening group,

I would like to just say that, that don't hide

behind anything is good to maybe hide behind your father or

anything like that. But try to if you have it, figure out how

to live with it because the things that I rattled off like

the working out reading the everybody should be doing that

anyway, so it but the it helps and and you can find help. If

you're feeling or if your wife is telling you you're not the

man you're not, you're not behaving like like you normally

did, which she did say to me. And so there was something

wrong. We had to get to it. And then we did it and we got to it

and we were all ruffled and but we need to keep moving forward.

And and keep do this go go to an event go to and and then read

and this FTD is in a class like Alzheimer's. And the one thing

that you do with Alzheimer's and FTD is not take their medicine,

you can damage your head a lot harder if you're taking out

Alzheimer's stuff. So so that's what I would say, stay alive.

So I want to tell you, you, your fighting spirit,

your courageousness is so admired. You're you're digging

in deep here, you're living your life. And, and that's what you

got to do. And so, this has been a really one emotional and a

deep show. For me personally, because I resonate with what

you're doing, and I'm in your corner, I know you're in my

corner. And that's what we do, we bond together, we lift each

other up. And so this is you can find me our brown at the shining

brightly.com You can find about my speaking, you could write

about the book, shining brightly is doing so great. You can even

find it on Amazon or contact me directly. You could find out

about the podcast, which this will come out in a couple of

weeks. Doing great 25,000 downloads, people are listening,

they're getting inspired, they're getting informed,

they're getting motivated, educated, and it's just

tremendous. And then you can learn about my advocacy work, my

advocacy, work in entrepreneurism, interfaith and

in cancer. And now Kris has advocacy work and FTD. So, if we

shine brightly, just a little bit each day for ourselves,

which Kris does, and we do we take care of ourselves, then you

help others which he's doing, I'm doing, okay. And our

communities like we're giving all this great information

today, the world will be a better place. So Kris, thank

you. You are a friend. You are brother in arms. What a great

show. Thank you for being here.

Thank you very much.