Parkinson's Progression, Advancing Symptoms, and Being Real with Kevin Kwok

foreign [Music] hey how are you good let's say you're seven for now yes I am welcome Kevin hello to our folks in the viewing area I'm Polly Dawkins I am a guest interviewer today on our live stream with our board member and good friend Kevin Kwok hi Kevin hey everyone greetings from Walder oh it's where it's finally getting a little bit warmer tiny bit warmer I'm waiting for that balmy spring oh aren't we both aren't we both well Kevin I thought we'd uh start our conversation by introducing you and um sort of get to know you a little bit and your story so to start off with me it would be helpful for our viewers to learn a little bit about your background and then I'm going to ask you maybe to Define yourself using a few different nouns but to start off you know who are you as you come into this uh live stream and and um what's your connection to our work well um I'll start by saying that um I've come into this club of being uh a Parkinson's Club member not by choice but like all of us uh through a Twist of faith I've been living with Parkinson's now for it's going on I can't believe it now but for 14 years and uh I'm happy to say that the first decade has been really quite good oh man I'm gonna call that the good ERA in here uh I've been a lifelong pharmaceutical biotech executive uh in addition to being living with Parkinson's and for 12 years I managed to maintain a career um which uh in many cases you see people working four or five but I was able to sort of shift and pivot my rules to make myself what's the right word um functional and actually adding benefit to it to the ecosystem that I worked in WoW so um my background is this is a clinical scientist I'm a pharmacist by training up my doctor's degree but the things that I come to you with today are are not scientific but more just experiential as someone a fellow person living with Parkinson's um one of the greatest things that has happened to me is the relocation here to Boulder thanks to the Davis Finney Foundation I remember being at a board retreat with you all and thinking about what I was going to do with this new life of mine you know I was just coming off a divorce uh thinking about where I wanted to live I I've been living in in the Bay Area California for almost 25 years before that and it was time for exchange and and to hang a new shingle and I remember chatting with Davis and Polly and Connie uh and Connie said to me Kevin you should really think about coming here to Boulder her comment was I think you'll live better and live longer if you come here it's because of the resources for those of us from Parkinson so I sort of bit the bullet and knowing all the three of you moved here uh and that was part of the beginning of era two which I'll go into in a second but um for people watching uh Davis is Davis Finney our founder and uh Kevin refers to Connie is Connie Carpenter Finney uh Davis's wife care partner and uh board member co-founder of the foundation so that's who that's who Kevin's referring to yeah sorry about that I should have explained it but I read on board with all of you for the last several years and that has been very meaningful and adding uh what I would call a meat to this whole life of Living Well Parkinson's uh in here um so I would describe my first few years as being sort of blindly optimistic at night you know I I went to this when I was actually diagnosed with Parkinson's there was a lot of denial going on and then for the first few years I I actually didn't tell a lot of my colleagues you know that I was going through this because I didn't want the choice assignments to go to someone else I didn't want the pity party and so I sort of just internalized it and and lived the first several years without telling a soul um what were your original symptoms that you were able to sort of as you said be in the closet and not show your colleagues well I think I was faking a lot of it to be honest uh and the modest of this were not very severe for me but I did notice things like walking I would take a lot of business trips and struggle walking you know from Terminal Gate to gate flight to flight I I felt myself dragging along um uh but but my mind was so intact and I was still you know pretty Lucid minded uh as far as functioning so I was able to sort of fake it till I make it sort of mentality for quite a few years um and back then I was very into this you know damn it I'm gonna beat this Parkinson's so there was this element of exercise like crazy uh and do all the things that you can try to sort of fade in your way through um But Then There came this issue of the decision for early DVS and so four years Kevin um if you don't mind me interrupting and asking a few questions yeah so early on you were fake it till you make it and hiding your symptoms perhaps as you said maybe not all that well but you you did you were able to continue to work really well um when when you've finally made the decision to tell work tell your colleagues and your boss um how did you do that how did you make that decision and what was their reaction tell us a little bit about that experience well so at the time I was a partner in a search for doing high-level executive placements uh in the pharmaceutical and Biotech Industry we were International so I had an international set of clients that I was worried with and the reason why I I came open on this thing was this was because uh I had an unexpected invitation to go through the surgical procedure deep brain stimulation I see and so I figured if I was going to come out with a shaved head and then have to go into hiding for six weeks in recovery people were gonna ask sure sure did some rehab center or something was going on in my life but the decision to to go into DBS really forced me to come open and I remember I went to the CEO and the president uh of the North American practice and they were supportive but they really didn't know what to do with an individual that was a senior level partner uh in The Firm and so I sort of read the writing on the wall this was a high high-paced high-stress living where you sort of were only as good as your current month of work and so I realized that the the system that I was living as a part of where where you eat what you kill wouldn't work for someone like me with a park and since uh it's so after shortly after I had DVS I was doing fine physically but I started preparing myself for the fact that maybe this was not the career track for me and I ended up joining one of my clients who actually worked in drug development on a Parkinson's drug and I I went internally into that company but it was a major major step back both in responsibility uh and Pace you know to make that move yeah and at the time uh it kind of hurled a little bit to come off the fast track but what the side to me said that maybe it's time for a proactive change wow so you took the decision early after your diagnosis to have deep brain stimulation surgery or DDS surgery how many years diagnosed were you I was four years in and that's really early for people to like deep brain stimulation um I was inspired actually by an article one of the things when you're in the art industry you get to read a lot of the medical journals across our death and so I remember in February uh that year uh an article came out in the New England Journal of Medicine on the European uh um philosophy and culture of deep rain situation which was to to start it earlier in people and back then here in this country DVS was something you reserved for the later stage and then this particular paper they showed that by going early you actually might see greater benefits and possibly even disease modification which was something being batted around at the time um so I was being treated as Stanford by one of our former board members Dr Helen Bronte Stuart who is the leader in DVS research and she I spoke with her and she said you know I always thought you'd be a great candidate uh but I think it may be a little early and you know the surgeons may not take the risk of someone as young and as healthy as you undergoing so literally they went silent on me for about eight months and then all of a sudden I was called to come in and I thought they were going to you know gently let me off the hook and say you know come back in a few years son and you know maybe we'll look at you more seriously but after about an hour of talking to them I said why am I here and they said well didn't we tell you you've been picked for DVS and we've scheduled you for you know three weeks from now I was like oh my God I haven't told anyone yet what's going on here and so I I almost backed out of it yeah it forced your hands to talk to work pretty quickly yeah and I had told a few uh select uh partners and colleagues but not to the whole company um they they were hugely supportive I will say and my taking me out of the uh that career track was my own decision or for my own well-being yeah and it sounds like you reduce your stress significantly by making that change huge huge um we hear that from our community all the time Kevin don't we that reducing stress is just critical to living well uh completely yeah you can feel it coming on the upcoming you know reports or meetings or client-facing attractions um it's almost like it goes hand in hand with worsening of symptoms in there and so for me you know I thought I could fake those symptoms I used to send my colleagues to the meetings ahead of time so I wouldn't have to walk with them down the hallway uh and he I think I lived a life where I was a little deceitful both to myself and and to others and to my family for that matter uh in here um but I was very lucky I I went to a client of mine they were friends uh and they allowed me to sort of adjust and adapt my career and I started to go into what was the buzzword at the time in the industry and that was called patient engagement and patience centricity and it was this idea of going back to patients and listening to them what a novel idea I listened to your customers and develop programs that really benefited you know what the Pay What patients wanted and so I was able to sort of pivot and turn this recruiting role into a role where I became the the microphone to the patient Community back to the company and I was the FDA I testified and it had a really great role in my mind I told people I had the best job in the company because I was able to go out and talk to people like me and then it influence the company based on our learning and that's how I met you right that's how you got introduced to the work of the Davis Finney Foundation was in that engagement role you were really engaged in the community doing that work and we we met up at a at an event and you said yes yeah yeah so we were lucky that you had that role because we got to know you and and you know my experience Kevin we've known each other for a number of years is that you do that role so well and they've done it for years is really speaking on behalf of of people living with Parkinson's and Care Partners well I I think it I consider myself I used to call myself a patient advocate but then I call myself now a patient activist because advocacy implies a little more passive approach and I really like to make change in the way that I've entered in as a patient you know I for all my career I watched the advances that were happening in the pharmaceutical industry based on patient volunteers and it was a volunteerism where I said it's now time for me to give back and I remember going to Dr Rodney Stewart early on in my diagnosis saying how do I give back and her comment was what do you mean by giving back and I said well I feel like I've ridden on the shoulders of other patients who've got us here to where we are today and now it's my role to help us move to the next the next generation of this disease so you know for me those first 10 years were were sort of ignorant Bliss you know I was riding High feeling good about doing the best I could just to be this disease I was cycling with you all I was still skiing I was boxing doing yoga I mean I felt almost Invincible at that point in time um but I'm sorry to say that that was almost faking myself out you know in there and that sort of leads me to this new phase that I'm entering it's called the midlife crisis of party right before we jump into your midlife I want to see um a couple of comments and see if you have any other comments and then let's hop into midlife sure so just to set the stage if I'm doing my math correctly you've had Parkinson's for 14 years yes you were in your 40s when you were diagnosed 48 okay and you've had uh deep brain stimulation now for about 10 years then is that correct that's correct no Kendra in the comments Kendra said that they had DBS on the earlier side as well but only on one side and that um their untreated side is worse than their original side now um they say that major symptoms are Tremors and dystonia could you just speak to that what's your experience well my symptoms early on were pretty much all one-sided they were left-sided you know in there and all the rigidity and slow motion was all on one side and for me there was a curiosity do you it's because I was faced with the decision do you have DVS on both sides or what and they gave me a choice but for me I wanted to actually see if DBS was really making a difference on my less affected side and so in a way you become your own control pet group right you measure your affected side versus your out effect inside and and I was sort of using the analogy of construction on a house renovation when you have the walls open and you're wiring for speakers you might as well wire the whole thing it's a good analogy so what I've found out over time is that my right side definitely has not progressed as fast as my left side which is quite a bit more slow and the um settings that they set me on originally have all really focused more on left than right but what's really interesting was I I became involved in a five-year re research project to try to develop what's called closed-loop DBS all right and so what what that meant was close regular DBS is the same voltage and settings all the time unless you manually adjust but closed loop was supposed to take us to the Next Generation where was DPS on demand so as you needed more it would adjust you more and it would rate read brain waves and through AI would actually make adjustments easy it's kind of like writing an e-bike you know I was in these five-year experiments where I'll all of a sudden felt like I could ride indefinitely based on me I feel self-adjusted uh it was really a wonderful feeling but my point on here and to answer the question that that comes in is during these research sessions they would switch me off all day long and put me on Nomads and it was almost like as soon as they turned me off I felt like a stroke had come into my body where were my left side would sag and I couldn't keep my eyes off uh this would be something you would do put to torture political prisoners right I mean I really honestly could see the impact of something that I was taking for granted you know these four volts of uh uh of energy had a material effect I don't know and when I used to give talks I used to ruin my DVS controller and I would turn it off in front of an audience and they would watch to see their eyes would drop even the miles would drop us they would see this person just basically start to shrivel away in front of them um I don't do that anymore because so I had a situation where I couldn't turn it back on one time and it was a little scary so I promised my girlfriend Jen that I would know not to these show off anymore good idea so talk to me about dystonia I noticed your hand and and you've talked to me about let's let's tell us what's going on with the Sony after you yeah so I'm entering this new phase now with some of the symptoms and the DVS are not as effective as they were before I'm told that you get about six really good years for the average time of patient of benefit some last much longer decades and others sort of he got it six years and then advancing disease happened so in my particular case I'm starting to get more rigidity and I'm definitely getting what's very severe dystonia in the hands and in my toes to the point where it's hard to hold things impossible to type uh and uh it's something that I'm working on I have these braces on my hands this is not bling um these are basically splits that try to hold your hand into a position where you can actually squeeze them but I have trouble nowadays like shifting gears on a bike Outdoors or or holding a fist for boxing like I came with my right hand but the Sony is definitely catching up and so are some of the other non-motor symptoms the fatigue of the cognition I'm speaking trying to speak strongly right now but my voice and the way I used to make a living and you know talking I has been greatly impaired um you you're catching me at a good moment right now but at the end of the day I'll be just barely a whisper I'll be like Muhammad Ali who can barely get words out and and try to single more with Whispers And and things do you have to preserve your voice and really think about when you are going to use it and how and very much knowing today that we were going to have this conversation did you have to preserve your voice in the morning so you wouldn't over tax it yes I did a number of things I I tried to preserve in the morning I didn't exercise in the morning like I normally do I was gonna wait till afterwards to get on the bike um I I from time to time will take um met methylphenidate which is a form of Ritalin which helps me with cognition and fatigue so that I can get words out uh and my my secret sauce special thing was right before I got on this call I stepped on out of the balcony and got a whiff of coal there to get that dopamine running oh that's kind of a fun strategy somewhere so look as we segue into sort of middle life and uh living with Parkinson's if you were looking back at how you would have defined yourself even even five ten years ago living with with Parkinson's what were some what were some nouns you would have used back then to Define yourself um well I like to think of myself as a warrior yeah someone who was not going to let the disease get you down and try to defy the odds uh getting through that um Warrior might be a word that I I'd like to be called um uh uh others might call that Dreamer yeah yeah there was there were many and this is something that I've come to learn is sort of this rah-rah um optimistic top toxic optimism is not something that's always beneficial to the rest of our track we run the fine line as spokespeople for our disease to show the people that the positive side of of being optimistic and having faith but there is the reality also that this is a tough disease to live through day by day and I think that balance is coming more into perspective for me is we we've come into the last couple of years when I first met you I would have said and I still say innovator um I think dreamer with great uh friend athlete um how else research researcher research Junkie yeah yeah Traveler yeah yeah yeah I mean I've traveled all my professional career uh internationally I'm one of the few words as people that have three million actual travel miles and that's but in the sea miles of travel and yes you know since my diagnosis um well that's another part of it right is that with Parkinson's I've had to learn to sort of back off and accept that that that that's a life of the past and I mean getting off of planes going for dinner meetings any one dinner meeting a different country than flying back from Europe I I can't do that anymore that that would destroy me in there and so you kind of back off from that but I still love travel I still have found other ways to do it I put a tent on the top of my car and Jen and I drive across the country camping and meeting friends which has been something new for me that I would not have thought about uh in my past life um so let's talk about your current life your middle life as your here's evolve as we're all aging and evolving with our with our aging bodies and with your disease process um what does midlife look like for you and how are you what's your philosophy now and how are you living with Parkinson's now well midlife has has been a cool splash of cold water on my face you know um since moving here to Boulder I moved here in 2019. uh and then was continuing work and then 2020 sort of the world would change in a dramatic way covet hit and while I was continuing to work that year I faced a number of personal uh insults to my life which really changes my younger brother passed away from Parker from from um cancer uh and then this wonderful career that I had came to a complete screeching house all in the same week as my brother's passing because I we had to restructuring and unfortunately I I was laid off in that and so all of a sudden this happy-go-lucky guy was dealing with the realities of the world of family members getting sick I'm trying to get to a memorial service during coven when everyone was telling you don't go and then all of a sudden the same week losing my employment and employment of you know almost a 30-year career you know okay I can't do it screeching out and at that point I I really started to see the degradation of our fellow patients out there you know I would run into them we were in all living in Social isolation and the Davis Finney Foundation posted an interesting article on what they were calling sarcopenia right which is muscle wasting where you basically you see this in cancer patients and you see this in the elderly or muscle mass just degrades and then all of a sudden I was watching this very healthy tribe around me starting to sort of deep diminishing how and so I started really asking myself is this what midlife is all about right middle of Parkinson's uh and so I you know I went from this life of you know high speeds not as high as what I was a executive recruiter but this full life of you know nine to five Zoom calls um for work and then squeezing in a workout and then going you know getting on the bike on the weekends with people like yourself and Davis all of a sudden to like I'm not even trying to get on a bike right now you know and I'm going to this fog of cloud trying to deal with insurance companies on disability you know trying to show people that I I wasn't as healthy as I really was faking consuming uh it was a very tough time and a very uh it was some dark days for me to be very Frank I was very fortunate to have my care partner in the world uh the care partner in my life come out uh to help me with the replacement in my battery and then coveted and she moved in uh indefinitely because she couldn't go back to Michigan and the partnership saved my life you know I in there um it's amazing isn't she oh well for those of us who tried to do this alone it's a very challenging thing and to find the right person who can show the carry and the affection to help you get by is is worth it's invaluable I should say um but what this thing taught me though this era and I'm still learning this right now is that Parkinson's is not a passing fad you know it's here to stay and we've got to deal with it and live on and it took me back to the days of when I used to train in martial arts and when I was a college student I I was able to take one or two electives because we were science Majors but I took a course on Chinese history and going back to my roots as an Asian American I started thinking about uh this thing called taoism there were taoism and so my current thinking now as I enter this mid-stage of of Parkinson's as a philosophical change on how to think about the Tower of Parkinson's Tau translated is the path or the way or the road and so what I'm thinking about now is how do I deal with Parkinson's through this midlife crisis uh or mid-stage as I did in my early stage to prolong the longevity and the living well that I did in stage one uh and the the word Tau is it has been used in modern days as well that taoism uh came is hundreds of years older maybe uh from the old Chinese philosophy but you may have seen it in a more modern-day Bruce Lee for example use what he calls the Tower of the intercepting fist which is in the 1970s was something that he really professed and in the 1980s someone wrote on Towers The Tao of Pooh Winnie the Pooh right trying to translate Living Well through Winnie the Pooh characters so here I am in 2023 trying to Define what is the Tower of Parkinson's in here I'm sorry how do you define that what does that look like for you well I've been starting to prepare for an upcoming talk that I'm giving a tour to a uh it's a keynote address and I've been doing some research on this not to get bogged out in the philosophical academic side but taoism as I understand it comes down to three main pillars which really do hit home for me those three pillars are Simplicity in life learning patience and developing compassion and through the course of my days I've tried to find elements of all three of those pillars that I've adapted to so for instance Simplicity my life is a lot simpler now than before because my job is to get on that bike back there every day and make sure that I can do a route for 30 40 minutes and work up because I know that helps me I'll get better somebody asked if you write a two Kinder asks do you do a two or three wheel bike I use it too but it's been interesting for me because with the um uh introduction of the dystonia in my hands and I'm getting into my eyes a little bit where I blink and sometimes it's slow to open uh I'm wondering if I'm safe on the road and so I'm going through Botox in my hands and eyes let's see if I can improve that a bit um I I have not yet gone to a three-wheel but it may be indoor that's an indoor trainer there behind you yeah that's the Wahoo treasure that I use uh five days a week or or more yeah I'm addicted to that bike out there it's my best friend that got me through uh coven but I did get an e-bike uh when I turned 60 my parents uh gifted me a Gravelly bike which I love it and I can't wait to get back um because when you have uh the battery assisted help you feel like you could do a lot more riding and I'm not done yet I've got a lot of writing to do in my life completely yeah so what do you feel like if you you said you get on that indoor trainer five days a week what do you feel like if you don't get on a trainer or you don't exercise you know when I'm traveling I don't have access to the bike I feel sluggish I mean the symptoms the lightnesses there there's two I think there are two elements that that you you come through when you have the dedication to an exercise what did you get up in the morning and you prepare your day so that you go out there and train and then there's a physical act of doing it um you just feel better afterwards saving goals uh and preparing for events really helps me out because I I'm the type a person that likes to push myself a little bit harder than I should but I feel that if I push myself I'm only getting better but you well if you saw me getting off that bike uh after some of the rides that we're preparing for this tour this Wahoo Again Tour I'm second winning and I'm almost like a zombie in fact you're reminding me I've got to get back on insert because oahulugan event for those of you who don't know is this great virtual ride it's our metaverse when we actually ride against ourselves in a virtual way but it's so much fun I'm addicted to that now yeah so Kevin yeah you sure did thank you so I want to take you back to your Tao of Parkinson's uh you started with uh Simplicity was and you were talking about the Sim your routine is fairly simple now compared to what it was definitely and I've learned to say no to things too I I say yes to everything you know every committee every Zoom call every uh talk I I would accept them without fail I think part of it was I didn't want to miss out but now it's being able to cut things off has real benefit on there patience is the second pillar and this idea didn't say that you know I'm moving slow uh but that's okay right and you just build more time and you know when I park the car and try to get out it it takes me it would seems must seem like an eternity to to unbuckle my seat belt and and get out but to me that's okay I've accepted it now the thing that is the harder is being patient with others because they may not know what we're going through and you can't get angry at them you've got to learn to educate them and I think that's part of the learning that I'm going through right now so patience for yourself and patience for others it sounds like that's right and as part of that patience what I've been doing is accepting the weaknesses that I have and now working on training those weaknesses so if this is my workout now is not like the boot camps boxing that I used to go through where we would just work ourselves into the ground nowadays I mean we split my workouts into one-third cardiovascular one-third balance index 30 and one-third weight training uh in there and the thing that I I'm not the most balanced person anymore but I love spending time on a voice of all with one leg uh and trying to hold it up and shifting with different dumbbells uh and things in there just to try to work the things that I know are going to let me live longer uh in there it's an acceptance and of hate it's patience in a different way there's still things but you know the days of getting out there and riding 60 miles uh that that's hard for me yeah even on anybody I'm sorry even on an e-bike it's hard yeah I haven't posted that far I don't know if the battery would last that long yeah Helen here asks if uh do you think treadmill could be used for walking light easy walking she says she doesn't want to do marathon stuff yeah you know this past summer um the Brian Grant Foundation Brian himself asked if I would join his relay team and I'm not the greatest Walker anymore in fact I ski better than I walk but I use the treadmill a lot we were going through a heatwave this summer and I couldn't get outside in a 100 degree heat to walk so I walked every day on the treadmill uh and built up my mileage and my very slow pace on uh I think the the key is take whatever tool you can use and a tool that you enjoy and then do it uh and then set little goals you know if you can go you know at a certain pace for for three miles today try for three and a half you know tomorrow and I again I'm I'm a real geek I I tend to chart everything out there because I like report cards where I show that I'm doing well all right so we've gone through Simplicity patients and then the final one is compassion and how do you how did that show up in your life well compassion is something that I in order to be compassionate you have to be um aware and I think the sensible aware of the people around you is so critically important uh so I've been some of the best people through Parkinson's you know I I mean the people in the foundation the board the ambassadors you you all are my friends that I will call off when I need help and likewise I would hope that you would call me if you need some assistance on things um compassion to me is gratitude and there's a great movie out right now starts have you heard or seen it I haven't seen it yet but it's been recommended a few times yes right yeah it starts it happens to be a therapist that has Parkinson's and he talks about the tools of gratitude and other therapeutic tools that he uses in his counseling for his patients but I found that his model for picturing and allowing gratefulness even during your dark days to help Drive the positive things in your life to be really really um beneficial to me you know I I did this Triad of the towel that I'm trying to discover is still work in progress I I don't think I'm there even close to the tip of this Iceberg but I think I I think I had it down for phase one or Arrow on I think it's integral to thriving well as Parkinson's takes over more of my life and and so I I'm thinking as I'm contemplating this style of Hearts why why is it important well it's allowing me to dig out now for my dark days you know but it's more than just digging out Holly it it's actually allowing you to flourish we we talk about every day is a victory and we have to celebrate those victories uh and the victories will become harder as as we enter more of this mid-stage Parkinson's um but what I'm hoping that it does is it allows you to really live well and stretch what could be a two-year period into another decade that would be my absolute goal in here and then finally it helps you prepare for the late stage when you finally it comes our way because I think it's if you live this journey of of handling a positive and accepting it all for what you have now at the end you you'll you'll sort of be embracing it versus fighting it on there yeah that's my hopes with this towel is is to find the way of Parkinson's yeah that's beautiful and I'm looking at a comment from dawn here who says they've just started and stunned how much they still have to learn it's humbling to meet people who've gone through more so you're your leadership in this and your the way you are discovering your path uh is really helpful for others to see and and model some of the things you've experienced and take pieces of what you've done and what others have done to to make it easier for them thanks thanks Molly you know I I'm the most rewarding situation happened to me a few weeks ago where someone was introduced to me and they they called me and said you know it's a mutual friend says that I need to come and talk to you to learn more about the science I have what's going on with Parkinson's can you've been a recent newly diagnosed patient um anyway we had a conversation which started with the science but ended on this philosophy in life on dealing with it and he wrote me a thank you note I have to say I came wanting to learn about the technical aspects of the disease and I came away after our morning together oh the better appreciation on philosophy and life and that just touched my heart because we he was going through a really challenging Partners Acceptance in the early times and I was glad to be able to let him put him on the track of thinking you know we talk about the palliative model of of Parkinson's care but part part and parcel of this palliative care is figuring out the entire journey of what we're facing here so the beginning will teach you a lot and you want to master it and yeah and you'll go through that phase of feeling really like I think I'm I'm just starting to get it and then then you'll hit this mid face and then you'll have to adjust and I'm hoping that that mid phase becomes just a equally as celebrated as it was for me for the first part the first thing yeah am I getting too philosophical no not for me certainly hopefully our audience uh can can take some some learnings from that and and uh sort of the approach that you're you're leading into which which is really helpful and you know acceptance and adaptation is what I'm hearing is every new thing that's thrown at you it looks like you're adapting to incorporate a new approach to living well with with Parkinson's and you know when I asked you half an hour ago how you would have defined yourself 10 or so years ago today Kevin as we're wrapping up how do you define yourself today I like to think that I'm an ongoing scholar look I'm still learning and and trying to um digest what what's coming my way and the digesting in a way that I can give it back to the community and also help myself at the same time um that's wonderful if you could go back and talk to Kevin 14 years ago what would you tell him now oh get out of your cocky ass you know it's like yeah we think we know it oh I mean I talked to my I think about my own life with why as a kid with my parents and then I look at you know my college age and post college kids and we always think we have all the answers but uh Parkinson's is very humbling it's humbling in the sense that he will always challenge you yeah so all I can say is well I'll close with this one thing that my martial arts teaches to tell me they said in times of peace and Tranquility of brick houses is is the right structure uh but in turbulent times like typhoons and hurricanes bamboo survives I think that what we need to know is when the the brick house and when to be bamboo in there and and then being floppy sometimes is actually a stronger way to be and so for me I'm hoping to adopt that change that adjustment which is coming my way I love that that just gave me goosebumps what a great way to close your conversation well I've enjoyed this a lot as well it's always great talking with me I hope that um for the people viewing this that that you know you you get your own nuggets and develop your own philosophy on how to do this because it's a long road and you you all will have your own ways and of coping and adjusting but just know that we all have are doing this as we speak yeah and we're here at the Davis Finney foundation so feel free to reach out you can contact many of our all of our ambassadors through the Davis Finney Foundation website if you're looking for others like Kevin to connect to and share experiences and and we're here for you so please feel free to reach out to our website and find us and connect with us thank you all for watching Kevin thank you for being here for all you're doing for our community and look forward to catching up with you again my pleasure Valley you too be well be that bamboo structure they uh thank you

Channel: Davis Phinney Foundation for Parkinson's

Views: 16,603

Keywords:

Id: oIVDiffEVA0

Length: 58min 18sec (3498 seconds)

Published: Thu Feb 02 2023