speaker-0: So, Brian, what's like one word that you told yourself when you were first diagnosed to like kind of keep you motivated?

speaker-1: I don't know if I had one word, I had one saying. Never a victim, forever a fighter. It's a tattooed on my arm.

speaker-0: Ooh, where'd you get that? Is it really? I didn't know you had a tattoo on your arm. Welcome to The Secret Life of Parkinson's, a podcast created by people living with Parkinson's to help break the stigma of a disease no one likes to talk about. Now here are your hosts, Jessica Krauser and Brian Baker. Well, now we're going to learn about some other words and how somebody with a Parkinson's diagnosis has been dealing with their...

speaker-1: I got two of them.

speaker-0: throughout their journey. So please meet Gary Gosselin. Gary, nice to see you again.

speaker-2: Nice to be here. Thanks so much for inviting me. I appreciate the opportunity.

speaker-0: Absolutely. So I met Gary in Washington, DC when Melissa and I went on our road trip without you. We were doing some advocacy work. It was a lot of fun, actually. And so I met Gary at one of the happy hours after. So. Right. It was it was you have to do what you got to do, right? And he shared with me this band, this.

speaker-1: with Nathan. as perseverance.

speaker-0: And then the other side says intent. ⁓ So anyway, so he ended, he ended this to me and we started chatting. so that then just kind of played into all of this. So Gary, nice to meet you. Thank you so much for coming on. but before we dive into these bands and what they mean for you, I just thought we'd get started on where you are on your diagnosis journey and, know, just, just your background.

speaker-1: I would.

speaker-2: So I was diagnosed in 2020 and had a small ⁓ tremor in my right hand, which has grown a little bit.

speaker-1: ⁓ went to a EP and sent me off to see the.

speaker-2: Roll it.

speaker-1: went through the neurologist and had a couple of situations where they put me on medication, of course. I said, we're doing that, we're going to find out more information.

speaker-2: they immediately wanted to. Nope, we're not. I don't more. I managed to find a movement disorder.

speaker-1: ⁓ medical up in Hampshire. Her name is Rebecca Thompson and she is a professor of psychology as well as being my my doctor. So, relationship with her, ⁓ is one of the Parkinson's Foundation's. Okay.

speaker-2: We are in New England about three, one down.

speaker-1: Mass General Hospital in Boston and another because we all. And then here in New Hampshire. ⁓

speaker-2: in this hospital in Boston. So ⁓ I have yet to start medication. ⁓ really? I'm going into my seventh year. I exercise a lot. Rebecca's

speaker-1: attitude, Dr. Thompson's attitude. ⁓

speaker-2: is when you're ready for this and you will let me know. But so far it's really from her voice, know, soft voice. And that's pretty much it. I'm delighted to say that, you know, I'm seven years in and I'm going strong. was on the Peloton for 45 minutes today and nice to be on that. So it's worth a lot of hiking as well.

speaker-1: Okay. four days a week.

speaker-0: Do you see a voice specialist or anything for like a voice?

speaker-2: Do project. Really important that you have.

speaker-1: Good, good boy.

speaker-0: We have a.

speaker-1: I think he is completely.

speaker-2: certified and

speaker-1: a wonderful young lady graduated from BU.

speaker-2: Great.

speaker-0: Do feel like that's helping?

speaker-2: Oh, totally. All the difference in the world. must say, you know, long we're forum, one of the things that I've learned beside what we're

speaker-1: and make them That's a good piece of... we're going to talk about.

speaker-2: self-advocacy. Yeah. I just can't help and people are tired of me hearing it. You've got to self-advocate and you do what everybody else does. So many varying options out there and so many of

speaker-1: . Just go with the flow, and you'll see what can do. called, if they're not.

speaker-2: not going to cure you, they're at least going to make a big difference in your life. And it may be true. But you know, I think you have to be involved. In my opinion, you have to be involved with a movie.

speaker-1: disorder specialist and you have to be

speaker-2: I'm one who over how I feel, that's that and.

speaker-1: So far, so good.

speaker-0: That's awesome. So tell us now about these the resolve band that you have since created and shared with us. How did well how did this start and what does it mean to you.

speaker-2: It's a very bizarre and stewardess story and I know we don't have the time to get into it. But basically being diagnosed in 2020, ⁓ I did a lot of self searching and soul reflection. And one of the words that I came up with was perseverance. And it's always been one of my favorite words. And I worked on a definition of. And. ⁓

speaker-1: details here. for the hearing.

speaker-2: 2020, I actually printed it out and put it on my file.

speaker-1: I'm still have final thoughts.

speaker-0: ⁓ I have plenty. Don't worry.

speaker-2: By my definition is to carry on in a course of action, even in the face of little or no evidence of. And that is such a strong, my opinion definition of perseverance, because it basically is saying, no matter what happens, no matter how awful things are, stick with it, keep going. And you may not even know that you're succeeding. There's no evidence that you are.

speaker-1: healthy.

speaker-2: but you hopefully are. So you have to take that. so from 2020 ⁓ to 2024, perseverance was my word. And I went through three different drug trials, two at Dartmouth and one down in...

speaker-1: Run with it. and that is real deep.

speaker-2: been a, you know, did my did my thing, had my and all of that. And my feet started getting a little bit soft. So I figured out that part of

speaker-1: and then. voice project was a great way to go.

speaker-2: ⁓ And they talk about intent and how important intent is.

speaker-1: and the definition of intent, the one I use, the attention.

speaker-2: having the mind, the will, concentrate on something to achieve a design. All three of those things working together. And so when I got to that point in 2024, I was so thankful for all the different people.

speaker-1: result. that have helped all the drug clinicians, the doctors in Boston, the doctors at Dartmouth.

speaker-2: and my family and I said you know I'd really like to come up with

speaker-1: My ⁓ something that I could, know, as a, um, to let them know how.

speaker-2: Okay. important they are to me. have these two words with me. And so I put together a wristband. I put an order in for 10 wristbands, being totally optimistic. And I just wanted to give it to like 10 people and that was going to be it. And so I put them together. ⁓ I gave them to the people and I started getting feedback from the

speaker-1: Bye.

speaker-2: clinicians and the doctors both involved. New Hampshire thing. Wow, you know, there's got

speaker-1: and then in. ⁓

speaker-2: grade and parts are wonderful. So ⁓ make a long story short, I ordered some more. And then I joined a support group called the middle years down in Boston. And in the middle

speaker-0: that.

speaker-1: ⁓ Let's put down at the hospital and run this.

speaker-2: the program director. wellness in the middle year. So basically

speaker-1: death of their diagnosis.

speaker-2: that are kind of in the middle year. We were in a group and someone said, you know, what is it that you use every day to help you? you know, what, what. So I just said, this is my wristband. ⁓ and wow, that's really interesting. So we went back into the main group and someone said.

speaker-1: So it's touched on sort of. left us and said, he said,

speaker-2: He said, ask Gary what he has on his wrist because it's really neat. So that happened. That's awesome. And then shortly thereafter, they did a spotlight article in the department of neurology newsletter. It was an awareness month. So they did that newsletter that sent a 2000 specials in area. then. Everyone.

speaker-1: parking. of the panel. They asked me to come in and do a presentation.

speaker-2: So I did that as well.

speaker-0: So what did you share about what did you share about your journey? how you I know you said you had some you had a lot of early days that you were just doing some soul searching, I think, in the beginning, what was that like?

speaker-2: I had to figure out how I was going to approach this.

speaker-0: How did you feel about it, I guess, at first?

speaker-2: I'm a pretty pragmatic guy and I'm pretty realistic. I my entire life. have ⁓ wonderful family. I had a wonderful career.

speaker-1: 35 years in commercial real estate.

speaker-2: And, you know, I've.

speaker-1: I'm unbelievably fortunate.

speaker-2: And one of the things that when I first initially started discerning, part of the drug testing was having my blood work done.

speaker-1: I'm sure you are very familiar with.

speaker-2: by the cancer center at Dartmouth and see 30 people waiting for chemo.

speaker-1: Hits Park Hospital.

speaker-2: If I say I'm pragmatic, nothing to complain about. So I decided early on that I was going to persevere, that I was going to be as... I was to try to do for myself. And literally through the wristband and through the short person of what I have been through has led me to the Parkinson's.

speaker-1: I I would do as much as I could. forum down in.

speaker-2: You see it out to Phoenix. To the world. I sent in an abstract, which I had no idea what an abstract was, but I did an abstract on the wristband. They accepted it and I'm working on a 48 by 72 inch poster board right now. I'm in on Monday and I'm going to roll that out and take that out to Phoenix and introduce 4,000 all over the world.

speaker-1: you both.

speaker-2: the resolve band. So I've been just a remarkable journey and probably most important of all, I'm on this podcast.

speaker-0: ⁓ well, thanks. So with your with your poster, like what is what are you sharing? Like what is the you know, is there is it feedback from, you know, people's messages that you're sharing or is it just overall like mindset? Like what what is what's the trigger?

speaker-2: It's quite, well, it's quite interesting because, you know, I got a lot of different advice and, know, academic poster boards, the rigor and the, you know, one of the things they say is, you know, lot of the academic poster boards are very scientific oriented, right? There's a lot of formulas and, you know, parts and flow parts and all this stuff. And they said, you know, you have a very, and you want to keep it.

speaker-1: on I, but. ⁓ Simple message.

speaker-0: Simple, yes.

speaker-2: is perseverance. So focus on that and let people know that the other part of the phrase theology to use is we're not alone. It's a part of what we found in giving out now 400. ⁓ It's a community. And I go to support. I walk into the room, 25 people there and probably 15 of them are wearing the wristband. ⁓

speaker-1: So wristband. course in this new ham. because they've been given them by the clinicians there.

speaker-2: So because.

speaker-0: So you give them to the clinicians and the clinicians hand them out? Like do they do that at the time that they're diagnosed or?

speaker-2: All the

speaker-1: upon what the situation is.

speaker-2: And, you know, so it really is. I give them out myself. ⁓

speaker-1: done an echo that we put on down in Portsmouth and had a booth there. ⁓

speaker-2: And I would also point out that I give them away. do not charge to them. I decided early on. that I get from people is so positive. And as I said, you know, I've been very fortunate in my life. And I feel like it's an opportunity. So out of 400 that I've given away, thing that I start for if they order it online is. Okay, so ⁓ but the worst word now in the world is surely

speaker-1: than me to give. The only. is the post.

speaker-2: everybody uses pretty much everything. But unfortunately it is curated. Not everybody gets one. But if someone wants one, they get it. But I don't give them out willy-nilly. And the only other thing I would say is that with the wristband, it's a package deal. I've had people say, we've got a race coming up. the wristbands, I don't need the box. I don't need the definition.

speaker-1: And he just give me.

speaker-2: Yeah. Right.

speaker-1: refuse to do that. And if the wristband is. where the resolve band name came from. ⁓

speaker-2: I put mine on every morning and I look at it and I see perseverance and I see intent and it gives me strength and the feedback that I've received from people.

speaker-1: is that that's circling the case.

speaker-2: So I'm trying to build a community. just ordered 250 more. ⁓ wow. Giving out probably another 100 at the forum. And then Lord only knows what I'm going to be able to give away.

speaker-1: I'll be. out in the sea.

speaker-0: So let me ask you. So when you when you put this on in the morning, we actually just had an interview with somebody who's newly diagnosed that was mentioning he's like, I'm so he's like, I'm kind of almost like he's jealous that we now can wake up in the morning and not think about Parkinson's every day because it's on his mind. He's only like five months in. Do you when like putting this on, are you constantly reminding yourself of Parkinson's or just of like what the hope and what the things that you

speaker-2: I need what I need to do. Yeah, the mind the mindset that I have I'd be positive about it one way or the other. know, in fairness, I, as I said earlier, I'm very

speaker-1: in it ⁓ that my symptoms are relatively mild. I go to support group.

speaker-2: I go to who are hurting, you know, their mindset. So I am not the least bit. I understand where other people are coming from and, you know, a joyful mindset might be very

speaker-1: Totally different. difficult for them and the feedback that I'd received.

speaker-2: see from people is that regardless of where they are, it gives them hope and strength to get and they realize you're not alone because they know they're wearing it and whether you're praying for them ⁓ or thinking about it or whatever it is. ⁓

speaker-1: give them through the day. other people. you to understand yourself and I think it helps a lot.

speaker-0: That's awesome.

speaker-1: Is will you hope other people get out of this?

speaker-2: I think people do feel alone. Oh, yeah. When I talk to people about it, I said, wear this and know that when you put it on, I'm thinking about you. And I think about all the different people that I've given them to. And I might add, it's specifically, I put it together for Spoke with G.

speaker-0: Yeah.

speaker-2: woman that is in my search right now who's going through a very serious operation down in Boston, and I gave her a wristband.

speaker-1: a week ago and it's an angel. It meant so much to me.

speaker-2: you know, and all of at that. ⁓ I think we're all looking for something, some reality. think one of the issues that I see and it's great if the wristband is unfortunately it's the wristband because some people put that wristband in, fight Parkinson's. ⁓ I'm going with something positive light and hopefully something that is going to develop strength.

speaker-1: Yes.

speaker-2: I find, you know, Parkinson's is kind of a, frankly, that's right. ⁓ I think having, giving, giving somebody more of a, I think more of a tool or risk.

speaker-1: I do think a of telling your children to to college. It really is a school and I people, and what I found is that people accept it that way.

speaker-2: people.

speaker-0: That's awesome. Thank you so much for sharing all of this with us and for sending us the information. And you're right. The box, I mean, the packaging is great. mean, whoever did this for you and even just like the cards, I love all of that information, but I really think it's, it means a lot in to it does get across that it's, is more than just a band. It is a mindset change and it is a way to, do you start your day? ⁓ whatever you're given, like you said, the woman in church, like, there's so many times, I mean, I could give this to my kids, like, you there's, have to like, get through things. And how do you get through hard, hard situations? So this probably goes to a lot of people on a lot of different levels. So

speaker-2: I would just, I would just want to add very briefly the Spanish version as well. Oh, nice. Because of the underserved part of a lot of these folks work that they do, the clinicians, speak of people that I work with. Some of their case loads are 75 % Spanish-speaking folks. so we developed that last year and that has the rose. When I sent you. Yeah.

speaker-1: We did come up with a because of the most. ⁓ Gold.

speaker-2: bands there are three different types.

speaker-1: Old band the ⁓ Parkinson disease patient or their caregivers. ⁓

speaker-2: speaking person and then the red person is

speaker-1: the advocacy work that I give to folks in Washington and

speaker-2: on that. when I'm speaking.

speaker-0: Yeah.

speaker-1: You broke something.

speaker-2: You got all three.

speaker-0: That is awesome. I didn't even realize that, but thank you so much. I absolutely love that. I'm glad you brought up the Washington DC trip, the one that we went on. Can you, you want to talk about a little bit more? Like how did it go for you?

speaker-2: Absolutely. It went very, well for me. was the first time that I'd had an opportunity to do anything like that. Same. the opportunity to be with 300 delegates from 45 different states and all coming together for the same purpose. One of the unique things I think about what we do and how

speaker-1: We're nearly there. Terrific. of the Fox Foundation and APDA do it is

speaker-2: we go in and tell our story. The facts and figures and bill numbers are nowhere near as important as them listening to our story. All funding is done by us free drug.

speaker-1: I've been involved with.

speaker-2: None of them would have taken place without NIA's funding. So for me to be able to go in and discuss that with them, understand that it's

speaker-1: these folks and have the opportunity to me and Frank to have this kind of funding.

speaker-2: the world to me and I think we made an impact and I'm looking forward to coming back.

speaker-1: and in March of 2020.

speaker-2: and doing it all over again.

speaker-0: Yeah, well, I'm sure they enjoyed at least not to be so ⁓ peppered with questions or issues, but actually getting a thank you as well. So I think that's actually a really good way to handle it. But well, great. Well, thank you so much again. I really appreciate you coming on. This is amazing.

speaker-2: My pleasure. appreciate your time very much. Thank you.

speaker-0: In our last 30 seconds, I will leave you with this. I'm going to read the definitions because I think that they're just so powerful. Perseverance to carry on in a course of action, even in the face of difficulty with little or no evidence of success and intent, having the mind attention and will concentrate on something to achieve a desired result. Gary, thank you so much. And with that, we will see you guys next time.

speaker-1: Thank you. Thank you very much.