A LIFELINE FOR LIMBS Marcy Rubic

[00:00:00] [SPEAKER_00]: Welcome to the AMPD UP211 Podcast.

[00:00:02] [SPEAKER_00]: Today, we have the honor of speaking with a true champion in the world of health-related nonprofits.

[00:00:08] [SPEAKER_00]: Marcy Rubic, with over 25 years of experience,

[00:00:12] [SPEAKER_00]: Marcy has dedicated her career to making a profound impact on those facing limb loss and limb threatening conditions.

[00:00:19] [SPEAKER_00]: As the executive director of the Limb Preservation Foundation,

[00:00:23] [SPEAKER_00]: she leads a charge in providing crucial support,

[00:00:26] [SPEAKER_00]: funding groundbreaking research, and advocating for the limb loss and limb difference community.

[00:00:32] [SPEAKER_00]: Marcy's journey is one of passion, resilience, and unwavering dedication.

[00:00:47] [SPEAKER_00]: Marcy, how are you today? Good to see you.

[00:00:50] [SPEAKER_01]: Rick, thank you so much. It's great to see you, and thank you so much for the opportunity to be here.

[00:00:56] [SPEAKER_00]: That's so sweet of you. I have really enjoyed our conversations online, on phone,

[00:01:03] [SPEAKER_00]: and otherwise. Getting to know you, this incredible foundation that you are a part of,

[00:01:11] [SPEAKER_00]: and also exploring maybe the prospect of us coming to your symposium,

[00:01:17] [SPEAKER_00]: and maybe doing something in terms of content there with the show. I'm fascinated with

[00:01:25] [SPEAKER_00]: nonprofits. I follow many of them. When it comes to people that advocate in this particular

[00:01:33] [SPEAKER_00]: space, I go even deeper in my curiosity and fascination with people that dedicate their lives

[00:01:42] [SPEAKER_00]: to non-profit, to helping others, to giving us people in limb loss situations, limb differences,

[00:01:53] [SPEAKER_00]: the threat of limb loss. All of those folks that need help and need support systems that aren't

[00:02:03] [SPEAKER_00]: gratuitous. They're practical. Hey, let's help you pay a bill, or let's help you get the right kind of

[00:02:11] [SPEAKER_00]: prosthetic care, or let's find you the right type of specialist so that you can preserve

[00:02:17] [SPEAKER_00]: the limb that you have depending on condition. Yes, I do want to talk about the limb loss

[00:02:26] [SPEAKER_00]: situation and everything that the foundation does. I also want to talk about you,

[00:02:33] [SPEAKER_00]: because I think for our listeners, there's always that fascination with people like yourself.

[00:02:40] [SPEAKER_00]: You are not someone who has suffered a limb loss, but you've been in these charitable

[00:02:48] [SPEAKER_00]: spaces for a very, very long time. How would you describe your particular ambitions about getting

[00:02:58] [SPEAKER_00]: into this health-related non-profit space? How would you describe what made you gravitate

[00:03:07] [SPEAKER_01]: towards what you do now? Yeah, honestly, I just always really had a passion for healthcare,

[00:03:16] [SPEAKER_01]: and it was really healthcare above everything else, but I definitely don't have the kind of skills

[00:03:23] [SPEAKER_01]: to provide direct care. I was always a good communicator and good with words.

[00:03:33] [SPEAKER_01]: I just realized early in my career when I was working in public relations

[00:03:40] [SPEAKER_01]: that I really wanted to talk about healthcare. I really wanted to

[00:03:47] [SPEAKER_01]: talk about really advances all the time and connect with that, and the opportunities that came

[00:03:53] [SPEAKER_01]: my way were honestly raising funds for healthcare causes. For the past

[00:04:02] [SPEAKER_01]: decades, a couple of decades, I have worked for a variety of different hospitals and different

[00:04:12] [SPEAKER_01]: national healthcare non-profits. Honestly, it's a privilege to work with the patients,

[00:04:21] [SPEAKER_01]: and there's always stories of resilience, something major in their life that honestly shaped them into

[00:04:32] [SPEAKER_01]: someone that they weren't expecting to be. Honestly, you don't want anyone to suffer, but

[00:04:40] [SPEAKER_01]: it often brings out some heroic qualities in people, and it's really an honor to work with

[00:04:49] [SPEAKER_01]: them and to advocate and try to improve lives. That's really where I came from, and I've been

[00:04:59] [SPEAKER_01]: really privileged to work for the LIMP Reservation Foundation for the past five years.

[00:05:06] [SPEAKER_01]: It's just a wonderful journey, and we really get to see and get to work with patients who

[00:05:14] [SPEAKER_01]: are extremely grateful for the care that they've received and also grateful to receive assistance

[00:05:25] [SPEAKER_00]: to know that someone cares for them. You've been very generous in providing the show with

[00:05:34] [SPEAKER_00]: some of your patients' stories, and of course I sort of gobble that up because for me,

[00:05:41] [SPEAKER_00]: the podcast, what we're trying to do is to highlight some of those journeys, some of those struggles,

[00:05:48] [SPEAKER_00]: which are really beautiful. I do agree that sometimes out of tragedy can come just this

[00:05:56] [SPEAKER_00]: incredible bright light of resilience, and I try to champion that. Is there a particular

[00:06:07] [SPEAKER_00]: patient experience you had that really had a really large impression on you

[00:06:18] [SPEAKER_00]: from where you were sitting? Would you be comfortable sharing that with us?

[00:06:25] [SPEAKER_01]: Well, honestly, I think that we are very fortunate and that a really large percentage of

[00:06:32] [SPEAKER_01]: our board are survivors of LIMP conditions. Some of them have gotten to keep their limbs,

[00:06:40] [SPEAKER_01]: and some of them know. But our common bond, I would say with our board of directors, is

[00:06:47] [SPEAKER_01]: they really, truly deeply care about this community because they've personally experienced it.

[00:06:56] [SPEAKER_01]: So just had lunch this week with our board chair. He's just one of those stories, and his journey

[00:07:04] [SPEAKER_01]: started decades earlier when he was an osteosarcoma patient. Really, he's been through numerous

[00:07:16] [SPEAKER_01]: knee replacement surgeries, revisions, chemotherapy, pain, intense pain. And to

[00:07:27] [SPEAKER_01]: really go through these experiences as a very young man, and he's a solid patient survivor.

[00:07:35] [SPEAKER_01]: He's someone who actually got to keep his limb, but he gives back, and it's extremely important

[00:07:44] [SPEAKER_01]: to him, just like there are other grateful patients just like him that are on our board of directors.

[00:07:52] [SPEAKER_01]: That it's a very important cause for him and for the other patients, survivors, I will call them,

[00:08:02] [SPEAKER_01]: that are on our board. And it's not really, as you know, a huge community. So to have,

[00:08:10] [SPEAKER_01]: I would say the privilege of working with people who feel so powerfully about honestly helping

[00:08:18] [SPEAKER_01]: pay bills for people that are currently experiencing these conditions, and they've been there. They've

[00:08:24] [SPEAKER_01]: walked in those shoes, and they understand how difficult it is. So to work with that energy,

[00:08:33] [SPEAKER_01]: I'm just saying honestly, it's a privilege and it keeps me going. It just keeps me

[00:08:41] [SPEAKER_01]: grounded in the work that we do. So the story I told, he's just one of many. But we have

[00:08:48] [SPEAKER_01]: many other survivors like him and their strong feeling of giving back and channeling their

[00:08:56] [SPEAKER_01]: energy through us. It just makes for a beautiful experience in terms of the work that we do every

[00:09:04] [SPEAKER_00]: day. Yeah, and I would think developing those connections with people on your board or

[00:09:12] [SPEAKER_00]: patients that you come in contact with, stepping outside of the emotional box,

[00:09:17] [SPEAKER_00]: I would think from just a clinical standpoint, you must learn a tremendous amount just through

[00:09:24] [SPEAKER_00]: osmosis because I find that when the more people I talk to in this community,

[00:09:31] [SPEAKER_00]: the more I learn about limb loss and I'm an amputee myself. And you know, I realize on a daily

[00:09:40] [SPEAKER_00]: basis that I am not an expert that so often I think, wow, never thought of that. Whether it's

[00:09:48] [SPEAKER_00]: how someone manages a limb difference or limb loss, or what kind of treatment plans are in place and

[00:09:57] [SPEAKER_00]: how that's constantly evolving. Or something in the engineering of prosthesis and advancements

[00:10:06] [SPEAKER_00]: and prosthetics and all the various things that keep flowing in and out of our communities and

[00:10:18] [SPEAKER_00]: I mean, do you feel like that is sort of like a benefit to what you do?

[00:10:26] [SPEAKER_01]: So much so and I love that. It's just like we were founded by an orthopedic surgeon,

[00:10:35] [SPEAKER_01]: a very renowned orthopedic surgeon named Dr. Ross Wilkins and he studied at Mayo Clinic and

[00:10:42] [SPEAKER_01]: honestly he was a brilliant, brilliant person. And many other people that we work with, our board

[00:10:53] [SPEAKER_01]: members and others are coming with a vast amount of knowledge of innovation, medical innovation,

[00:11:02] [SPEAKER_01]: prosthetics, engineering. And so we really learn about the cutting edge of what is coming and

[00:11:12] [SPEAKER_01]: the current techniques and how they're really just advancing so quickly. And that's really exciting

[00:11:20] [SPEAKER_01]: because you can see that life is going to be better for the community that we serve. So that's

[00:11:28] [SPEAKER_01]: a privilege and also fascinating to understand the kind of amazing surgical techniques,

[00:11:38] [SPEAKER_01]: surgical products. As I said, the engineering and how they're creating connections and

[00:11:47] [SPEAKER_01]: to the body that are going to make things so much better in the future and really

[00:11:53] [SPEAKER_01]: truly already are, that's exciting to be around. And I hope that it gives our community excitement

[00:12:01] [SPEAKER_01]: too to see how it's going to impact lives and improve them in the future.

[00:12:07] [SPEAKER_00]: Yeah. And is there something you would say specifically? Let's say if you were talking

[00:12:13] [SPEAKER_00]: to me for the first time and you're like, oh, Rick, okay, you're right leg below the knee

[00:12:19] [SPEAKER_00]: amputee, what would be something that would pop into your mind immediately in terms of, oh,

[00:12:27] [SPEAKER_00]: I need to share this advancement or this technology that might be relevant to his experience?

[00:12:37] [SPEAKER_01]: Well, I'm sure that you know and many of your audience knows about ASU integration

[00:12:44] [SPEAKER_01]: and people are getting, people are very excited about it and I know that it's newer

[00:12:52] [SPEAKER_01]: in the United States but it's really been around in other countries. I think Australia is really

[00:12:59] [SPEAKER_01]: where the origins were. And to think about honestly advancements that are happening globally

[00:13:07] [SPEAKER_01]: to make the mind connect with the prosthetic in a more seamless way. I think just in the very

[00:13:17] [SPEAKER_01]: short time I've been with the limb preservation foundation in the past five years to see

[00:13:24] [SPEAKER_01]: the level of acceptance and the FDA approvals of this basic surgical technique

[00:13:33] [SPEAKER_01]: and I'm sure that we're just at the beginning of that. I just think it, everyone knows that in

[00:13:39] [SPEAKER_01]: the future we really will be looking at more Star Wars kinds of technology that'll be

[00:13:47] [SPEAKER_01]: just making it kind of like a no big deal operation. So I think that's super exciting but

[00:13:55] [SPEAKER_01]: other things that they're doing internally with a person's body to basically

[00:14:04] [SPEAKER_01]: using computer generated bones to insert in their body that are personalized for that person

[00:14:13] [SPEAKER_01]: is pretty amazing that they're printed for that person. I just think that's so fascinating and

[00:14:25] [SPEAKER_01]: it's so amazing to hear about it. It's so amazing to know the people that are the survivors that have

[00:14:32] [SPEAKER_01]: those pieces inside their body. I just think that's a very amazing thing and the people that care

[00:14:41] [SPEAKER_01]: for those patients they care very, very deeply. They want a better quality of life for their

[00:14:49] [SPEAKER_01]: patients. They want to restore a natural function and everything that keeps quality of life.

[00:14:59] [SPEAKER_01]: So I think it's exciting to work with them. I think it's exciting to be with the patients

[00:15:05] [SPEAKER_01]: and to serve many of those patients and some of their needs that they wouldn't

[00:15:11] [SPEAKER_00]: have met for them otherwise. Yeah and I find it fascinating too going back to the Star Wars

[00:15:20] [SPEAKER_00]: reference. I've you know huge science fiction fan myself and always have been in literature and

[00:15:30] [SPEAKER_00]: film and I would always think as a young person it's really neat where do these ideas come from

[00:15:42] [SPEAKER_00]: when you see these things in movies? Some of us just take it for granted but I was always

[00:15:48] [SPEAKER_00]: this really, really curious kid and I used to think gosh how do they come up with that?

[00:15:55] [SPEAKER_00]: Who thought of that and what's it based in? And then I started learning about what's referred to

[00:16:01] [SPEAKER_00]: as futurists. These are people, communities of people that typically filmmakers, authors, different

[00:16:10] [SPEAKER_00]: researchers speak to about what the potentialities are in the future and most of these people

[00:16:18] [SPEAKER_00]: have engineering backgrounds, they have medical degrees. It's basically someone that

[00:16:23] [SPEAKER_00]: forecasts what might be possible based on what we know now and where technology is at.

[00:16:31] [SPEAKER_00]: And so much of what you see in film is basically someone who really, really understands technology

[00:16:38] [SPEAKER_00]: and medicine saying this is something that could be a possibility and we have the ability to get

[00:16:47] [SPEAKER_00]: there. It's just a lot of our checks and balances in our medical communities and the scientific

[00:16:54] [SPEAKER_00]: communities have to catch up with it, right? Because something comes into the sphere

[00:17:00] [SPEAKER_00]: and then we have to go whoa whoa pump the brakes, we got to make sure this is safe,

[00:17:05] [SPEAKER_00]: there has to be trials for it, there has to be testing, all of this stuff. But you're right

[00:17:11] [SPEAKER_00]: there will come a point in time when losing a limb from whatever event, whether it's trauma,

[00:17:19] [SPEAKER_00]: whether it's from disease, replacing that limb will seem very ordinary. Well yeah,

[00:17:30] [SPEAKER_00]: I know a good lad guy, he hooked us up and now everything functions just as it used to,

[00:17:37] [SPEAKER_00]: mechanically of course, but yeah it's all back to normal again, right? So that acclimation period

[00:17:44] [SPEAKER_00]: I think for me anyway, it's exciting to know that that path won't take so long, that it'll be

[00:17:53] [SPEAKER_00]: something that foundations like the one you represent, the people that you represent,

[00:18:02] [SPEAKER_00]: all of those things will come to fruition eventually and I'm excited about that. And I

[00:18:07] [SPEAKER_00]: don't necessarily feel envious because so much has advanced already and I very often spend

[00:18:16] [SPEAKER_00]: entire days where I do not feel like an amputee at all and that's very comforting, but I know

[00:18:25] [SPEAKER_00]: that things are getting better with every year that passes, with every effort that someone like

[00:18:30] [SPEAKER_00]: yourself is making and the people you surround yourself with, things are getting better, things

[00:18:35] [SPEAKER_00]: keep advancing, we keep pushing the needle in the right direction. And that's very very exciting for

[00:18:42] [SPEAKER_00]: me as an amputee to know people in my situation in the future hopefully will have a much easier road

[00:18:50] [SPEAKER_00]: than let's say I did when my journey started six, seven years ago. Going back to the foundation work

[00:19:00] [SPEAKER_00]: and all those connection points that you make with people, I think there's such an emotional

[00:19:09] [SPEAKER_00]: aspect of what you do and I can't imagine that there aren't times based on the situations

[00:19:20] [SPEAKER_00]: that so many people in this community get sort of thrown into that it would be overwhelming.

[00:19:27] [SPEAKER_00]: And I mean overwhelming in the sense of, so you're in this charitable space, you're part of a

[00:19:34] [SPEAKER_00]: nonprofit, you're in a leadership role which carries a lot of weight. So I would think it

[00:19:44] [SPEAKER_00]: be completely normal at times to just feel so overwhelmed with that duty to help people and

[00:19:52] [SPEAKER_00]: define resources for those people. I mean can you describe that, what that feels like at times?

[00:20:02] [SPEAKER_01]: Well honestly it is very hard work and my hat is off to colleagues like me who are working for

[00:20:13] [SPEAKER_01]: really a small organization and it is always a question of resources and how do we do this and

[00:20:22] [SPEAKER_01]: how do we measure our success? How do we do better? How do we help more people? And that is

[00:20:29] [SPEAKER_01]: always the thing and it is always very hard to draw the line of how are we helping because

[00:20:37] [SPEAKER_01]: really the people that we help and the point in their life that they're at is they're really in

[00:20:45] [SPEAKER_01]: crisis mode. We are helping people who are, they're very under, the main program is our patient

[00:20:56] [SPEAKER_01]: assistance program. I believe that is the whole basis or the original basis for the foundation which

[00:21:02] [SPEAKER_01]: is honestly seeing people who had to receive the care, the medical care but understanding that

[00:21:11] [SPEAKER_01]: the situation is so much larger and in particular people who are under resourced who lack financially.

[00:21:24] [SPEAKER_01]: Those are the people that's really where we step in and where we're helping to pay their

[00:21:29] [SPEAKER_01]: mortgages and their utility bills and their transportation and paying hotels stays for their

[00:21:37] [SPEAKER_01]: families so that they can come and support them. And oftentimes these people are in a crisis mode.

[00:21:45] [SPEAKER_01]: They cannot work because of whatever their situation is be it trauma or tumor or

[00:21:52] [SPEAKER_01]: an infection that's gone rampant in their body. So really what we are here for is to provide relief

[00:22:03] [SPEAKER_01]: to them. We want to relieve some of their stress, relieve their financial stress

[00:22:10] [SPEAKER_01]: for several months to get them through the crisis and connect them with other people who have

[00:22:18] [SPEAKER_01]: been there so that they can see that there is a new chapter in front of them and kind of

[00:22:25] [SPEAKER_01]: help them through some of the very difficult emotional components in that time. So

[00:22:33] [SPEAKER_01]: yeah, that's really what we're doing and we are helping them through a crisis.

[00:22:41] [SPEAKER_01]: Helping people that otherwise there really isn't a singular source that pays these bills,

[00:22:49] [SPEAKER_01]: these living expenses and our intention is to relieve stress for them and give them

[00:22:56] [SPEAKER_01]: one less worry when they're already consumed with what's happening to my body.

[00:23:04] [SPEAKER_01]: What am I going to look like when this is all done? All those situations if you're dealing with loss

[00:23:15] [SPEAKER_01]: to just grapple and put your hands around what's this going to look like for me physically

[00:23:21] [SPEAKER_01]: and then you also have to worry about how am I going to keep a roof over my family's head.

[00:23:29] [SPEAKER_01]: Many times we are dealing with the breadwinner for the family

[00:23:36] [SPEAKER_01]: and sometimes the caregiver has to leave their employment as well

[00:23:44] [SPEAKER_01]: to take care of that person. So it's a very serious situation and for those that don't have a lot of

[00:23:53] [SPEAKER_01]: resources, we really fill a gap and there's a tremendous need for that that we find because

[00:24:03] [SPEAKER_01]: our growth we've had a lot more people that we've been serving in recent years.

[00:24:09] [SPEAKER_00]: Yeah and you know LPF obviously fills a gap and these are resources that are just I mean

[00:24:18] [SPEAKER_00]: they're critical because I get contacted by someone who is going through an amputation

[00:24:27] [SPEAKER_00]: considering an amputation. Very often people will reach out to me and sort of describe what's going

[00:24:36] [SPEAKER_00]: on with them and of course I want to offer not just hope but practical solutions and

[00:24:46] [SPEAKER_00]: the first question and I've said this before on the show, the first question I always ask is

[00:24:53] [SPEAKER_00]: what's your support system like? And usually people will go right to

[00:25:00] [SPEAKER_00]: the sort of like emotional component, well you know my family is in my life and

[00:25:08] [SPEAKER_00]: you know I have good relationship with my kids and then I'm like that's great but

[00:25:17] [SPEAKER_00]: what about the financial situation? How are you going to survive this financially?

[00:25:23] [SPEAKER_00]: You know where are you at in terms of financial resources because if I know anything about

[00:25:32] [SPEAKER_00]: amputation especially is I mean it's literally a pause button on life. It literally says okay

[00:25:43] [SPEAKER_00]: everything that you were doing up until this point that's going to be on pause for a while.

[00:25:52] [SPEAKER_00]: You cannot just you know this isn't like some outpatient procedure where you go back to work

[00:25:58] [SPEAKER_00]: in a couple days. This is a major life change, this is a complete hard right turn and you're

[00:26:08] [SPEAKER_00]: getting off on an exit ramp and it's going to be a while before even any shred of life

[00:26:16] [SPEAKER_00]: goes back to normal. So knowing you know that organizations like the limb preservation

[00:26:23] [SPEAKER_00]: foundation is out there is a critical part and other organizations like yours because we do have

[00:26:32] [SPEAKER_00]: this sort of tightly knit community and there are these sort of key players which you are

[00:26:40] [SPEAKER_00]: part of that that are supporting people to bridge the gap, to make it possible at some point to

[00:26:49] [SPEAKER_00]: release the pause button and go back to your normal life and that's so important. I think because

[00:26:59] [SPEAKER_00]: for most people they see it as okay this is a you know this is a complete deal breaker like

[00:27:05] [SPEAKER_00]: I'm done like there is nothing after this and I try to be positive in that space although it's hard

[00:27:15] [SPEAKER_00]: to say no it's not over. It's going to look different, it's going to feel different but

[00:27:21] [SPEAKER_00]: with the right kind of resources, with the right kind of help, with the right kind of advocacy

[00:27:27] [SPEAKER_00]: and you know putting your team together whatever that looks like everyone has their team.

[00:27:36] [SPEAKER_00]: There's that you know that personal piece and then there's you know the professional piece

[00:27:42] [SPEAKER_00]: you know who are you surrounding yourself with in order to get back to normal and you know I

[00:27:50] [SPEAKER_00]: tell people don't get so discouraged by so many of us that return back to life you'll get there.

[00:27:59] [SPEAKER_00]: It's just a patient process. You have to give yourself time to heal and time to fail along the

[00:28:07] [SPEAKER_00]: way because that's just part of making all of this work and you know hopefully you've been

[00:28:16] [SPEAKER_00]: able to see some people on the other side of that. I'm assuming you have. Yeah absolutely and that's

[00:28:23] [SPEAKER_01]: really what we strive to do is to get people you know get them through the most difficult

[00:28:33] [SPEAKER_01]: crisis point so that they can go on and get back to life. It may not look exactly the same

[00:28:43] [SPEAKER_01]: but we have our community of people and we definitely want to connect those who have

[00:28:50] [SPEAKER_01]: successfully you know gone through their journey so that they can actually you know be living proof

[00:28:58] [SPEAKER_01]: and and and be a resource as well to you can do this you know if if I can do this you can do

[00:29:07] [SPEAKER_01]: this and there's lots of heroic people that we have the privilege of working with who are

[00:29:14] [SPEAKER_01]: superstars you know and then just everyday people are superstars too. Just honestly overcoming

[00:29:24] [SPEAKER_01]: these situations that are not they're not easy there's not a quick fix it takes months and

[00:29:32] [SPEAKER_01]: months of time with lots of pain and you know learning how to redo things and yes we we want

[00:29:41] [SPEAKER_01]: to support that whole process and get people to you know get people to connect with others

[00:29:50] [SPEAKER_01]: is part of that healing process for for everyone even for the giver of that mentoring

[00:29:57] [SPEAKER_01]: is it's very meaningful for for all members. Yeah was I was I reading correctly are you are you a

[00:30:05] [SPEAKER_00]: Chicago native or no? I am a Chicago native. Okay that's what I thought because you went to DePaul

[00:30:11] [SPEAKER_00]: right? Yes. Okay I went to Loyola. Okay. Yeah so we're kind of similar sort of educational

[00:30:20] [SPEAKER_00]: background. DePaul was another school that you know I looked at I don't I don't recall specifically

[00:30:28] [SPEAKER_00]: why I didn't go there and ended up at Loyola may have been because my brother went to Loyola but

[00:30:33] [SPEAKER_01]: I mean do you miss Chicago at all? Yes we get back there every year it's just a wonderful city

[00:30:43] [SPEAKER_01]: it's so cultural and dynamic and just so many skillful professionals and the top of the line

[00:30:54] [SPEAKER_01]: everything there I miss Chicago I'm proud to be a Chicagoan but the mountains were calling me

[00:31:03] [SPEAKER_01]: so yeah it's beautiful it's beautiful out here in Denver in Colorado and I like to

[00:31:14] [SPEAKER_01]: you know have the best of both worlds whenever every year we are back there my family is there

[00:31:19] [SPEAKER_01]: and friends and so it's really special to get back and go to all the you know wonderful cultural

[00:31:27] [SPEAKER_01]: institutions and the lake and you know and the suburbs too it's a wonderful it's a wonderful

[00:31:36] [SPEAKER_00]: metropolitan area. Yeah it's an incredible city I'm actually doing a bike the drive next weekend

[00:31:46] [SPEAKER_00]: and we've done it a few times you know doing you know 35 miles of bicycling on Lakeshore Drive

[00:31:58] [SPEAKER_00]: you know in the summer is it's pretty spectacular for me it's very liberating empowering

[00:32:06] [SPEAKER_00]: and there's nothing like you know pedaling along on Lakeshore Drive not on a bike path

[00:32:14] [SPEAKER_00]: you're literally on Lakeshore Drive and just you know cycling through the city is it's awesome

[00:32:22] [SPEAKER_00]: and I've done it a few times and fell in love with it and I'm so looking forward to it next

[00:32:28] [SPEAKER_00]: weekend. I want to transition to the symposium I want to talk a little bit about the symposium

[00:32:39] [SPEAKER_00]: what it's all about what you're looking to accomplish in April it's in April correct

[00:32:47] [SPEAKER_00]: yes what you're looking to accomplish in April so if I'm attending the symposium I'm just an attendee

[00:32:55] [SPEAKER_01]: what can I plan on seeing when I visit well honestly we do this symposium with the

[00:33:03] [SPEAKER_01]: patient at the center that's really who we care about and providing we want everyone of course to have a wonderful experience but we really want to bring together all the different disciplines with the patient in mind or the survivor in mind

[00:33:20] [SPEAKER_01]: we want to connect them with honestly the medical community there's often you know never enough time to ask questions

[00:33:29] [SPEAKER_01]: questions that other people have on their minds when they're when they're visiting their physicians

[00:33:35] [SPEAKER_01]: so we want to provide access to the physicians the prostitutes we want to provide some innovation

[00:33:43] [SPEAKER_01]: show them yet we've had some spectacular researchers that really give us a glimpse of what's coming in the future

[00:33:51] [SPEAKER_01]: so we want them to have access to all of those disciplines but also of course the most important

[00:33:59] [SPEAKER_01]: thing too is making connections with others we want to provide connections for basic resources how do you

[00:34:10] [SPEAKER_01]: you know the how do you do this and how do you cope with this how do you manage this

[00:34:15] [SPEAKER_01]: what are some resources that are that are helpful for me at this point in my life if it's so many

[00:34:24] [SPEAKER_01]: you know adaptive sports are happening now we try to you know do touch on some of those

[00:34:32] [SPEAKER_01]: physical activities and on the emotional activities and create togetherness for the survivor

[00:34:40] [SPEAKER_01]: as well as honestly the caregiver the family member or the friend that is there they have their own

[00:34:48] [SPEAKER_01]: you know issues that are different so we want to create a space that is for the number one

[00:34:56] [SPEAKER_01]: for the patient but also for the caregiver and also for the community of medical professionals

[00:35:05] [SPEAKER_01]: who are treating these patients so that they can build connections themselves so we're really

[00:35:12] [SPEAKER_01]: intentional with creating just a great variety of different disciplines to come together because

[00:35:22] [SPEAKER_01]: asking questions being curious learning from each other and creating a positive energy

[00:35:30] [SPEAKER_01]: is extremely um you know how it is you you've gone to these kinds of things before and you come out

[00:35:38] [SPEAKER_01]: of it and you're empowered you know you really feel like you've received some information that you

[00:35:44] [SPEAKER_01]: can apply to your life immediately and you've made some good connections that are meaningful

[00:35:49] [SPEAKER_01]: for you that you can carry on after the event so our hope is to bring community members together

[00:35:58] [SPEAKER_01]: and create positivity that they can take far beyond the time at this symposium yeah I think it's a

[00:36:07] [SPEAKER_00]: good point the empowerment piece and feeling like you're part of a community I was fortunate enough

[00:36:15] [SPEAKER_00]: to go to the the convention for the amputee coalition last summer I didn't go this year

[00:36:23] [SPEAKER_00]: but um I went with my girlfriend Sarah and who's not an amputee she's in in medicine but

[00:36:35] [SPEAKER_00]: she was commenting about how that experience made her feel like she was now more part of that

[00:36:46] [SPEAKER_00]: my community that you know by knowing me of course she's she's she comes from you know medicine so she

[00:36:55] [SPEAKER_00]: she's very curious and she asks a lot of questions a lot of clinical type questions and I can see her

[00:37:03] [SPEAKER_00]: her gears are usually turning quite a bit when it comes to you know how I take care of myself or

[00:37:11] [SPEAKER_00]: you know what what my prosthesis is doing how it's performing um how I'm reacting to it

[00:37:20] [SPEAKER_00]: but by going to an event like you're describing where it's a community vibe it's very positive

[00:37:27] [SPEAKER_00]: it's very empowering you're talking about education you're talking about advocacy you're

[00:37:33] [SPEAKER_00]: talking about community all these things that are critical again when we when we talk about

[00:37:39] [SPEAKER_00]: support systems she came away from that experience as a non amputee non limb difference feeling like

[00:37:49] [SPEAKER_00]: she was more part of that community now and I think that's an important point because so often

[00:37:58] [SPEAKER_00]: caregivers family spouses of people that are in these situations

[00:38:07] [SPEAKER_00]: maybe don't feel as connected to it maybe don't feel that there's a lot of sort of connective tissue

[00:38:14] [SPEAKER_00]: there for them because it's not happening to them but I always say it is it's just as much a part

[00:38:23] [SPEAKER_00]: of your life as it is the person who you love because you're going through it together and

[00:38:30] [SPEAKER_00]: and their victories are your victories their losses are your losses you know just like any

[00:38:37] [SPEAKER_00]: other aspect of relationship it just becomes woven into the fabric of what that is because very often

[00:38:48] [SPEAKER_00]: amputees will come to me and they'll say well you know I'm newly single now and how do you

[00:38:55] [SPEAKER_00]: how do you navigate you know getting back into a relationship as an amputee and I see this come

[00:39:03] [SPEAKER_00]: up a lot a lot especially on um socials like social media the whole okay relationship as an amputee

[00:39:16] [SPEAKER_00]: and you know the easy response is always well if they can't get over it you don't want them anyway

[00:39:26] [SPEAKER_00]: I'm like well that's a that's a sort of a simple answer for a very very complex

[00:39:33] [SPEAKER_00]: sort of you know problem or challenge let's call it and I see it as you need to find someone

[00:39:43] [SPEAKER_00]: that you can welcome into that dialogue that you can invite them to learn more to experience

[00:39:50] [SPEAKER_00]: more and once they're invested in some of those you know aspects of what this you know limb difference

[00:40:02] [SPEAKER_00]: journey is like it's just it's a bonding mechanism in the relationship I think it brings people

[00:40:09] [SPEAKER_00]: closer they understand each other better so I always say you know give give people a chance to

[00:40:17] [SPEAKER_00]: to learn more invite them to learn more I mean I had all the same hang ups when I got back into

[00:40:25] [SPEAKER_00]: the dating pool which was you know how is this going to be perceived and then I felt as if I was

[00:40:33] [SPEAKER_00]: sort of pursuing this sort of weird version of you know ableism where I had to overperform or

[00:40:41] [SPEAKER_00]: hyperperform or do even better than men my age because I had quote unquote something to prove

[00:40:49] [SPEAKER_00]: and what I realized is that it's just this very very gentle patient process of just allowing

[00:40:57] [SPEAKER_00]: those things to naturally happen and give your potential partner an opportunity to learn

[00:41:04] [SPEAKER_00]: and to learn more encourage that sort of education and advocacy give them a chance to be in that space

[00:41:13] [SPEAKER_00]: I mean bringing someone to your symposium I would think for a lot of folks would be very very eye

[00:41:22] [SPEAKER_00]: opening to see that there's so much happening there's so much excitement and positivity

[00:41:29] [SPEAKER_00]: in this community right and to experience that energy it's really an extraordinary

[00:41:37] [SPEAKER_00]: experience it's it's can be really engaging and fun and I think that that's what makes events

[00:41:47] [SPEAKER_00]: like yours so incredibly important to the community because you're saying okay we've got

[00:41:55] [SPEAKER_00]: clinical people we've got survivors we have you know some of the latest tech

[00:42:02] [SPEAKER_00]: going on things like that I'm assuming it's it's kind of a convention like atmosphere no

[00:42:10] [SPEAKER_01]: yeah um it is it is we have a lot of we have classes going on um we are also

[00:42:19] [SPEAKER_01]: we have introduced and we're planning to introduce more social aspects just because

[00:42:26] [SPEAKER_01]: what we've talked about the connection you know the connections that are made are

[00:42:31] [SPEAKER_01]: are very important especially connections among each other you know while that education is happening

[00:42:39] [SPEAKER_01]: so um I know that as someone else who's attended these types of things you know you come away and

[00:42:49] [SPEAKER_01]: you're so energized and honestly your life has been changed a little bit because you feel so good

[00:42:57] [SPEAKER_01]: and so full of ideas um you know you you come away with hope you come away with a new hopefulness

[00:43:05] [SPEAKER_01]: a new vision for some things that you can do in your life to deal with things um and and provide

[00:43:13] [SPEAKER_01]: enhanced quality um so we're looking to do that that is our goal we want and we have been offering

[00:43:23] [SPEAKER_01]: people some assistance to actually come to our event just um I think that you mentioned the

[00:43:30] [SPEAKER_01]: amputee coalition and I think that it's extremely it's got to be extremely empowering to go to

[00:43:38] [SPEAKER_01]: a major event like that um for people that are in our community that are you know maybe more

[00:43:45] [SPEAKER_01]: in the west coast I think it's um accessible to them and one of our goals you know truly is

[00:43:52] [SPEAKER_01]: to make it you know how can we help you get here um and we do offer them opportunities to

[00:43:59] [SPEAKER_01]: you know really tell us your story and tell us if you have some financial challenges and

[00:44:05] [SPEAKER_01]: what we can do to help you be it either cover you know cover your hotel or cover your um travel to

[00:44:13] [SPEAKER_01]: get here um we want to provide those experiences because they truly can be um they can really infuse

[00:44:22] [SPEAKER_01]: some connections people connections as well as education and you know provide a good

[00:44:30] [SPEAKER_01]: you know really provide an overall boost to your psyche that lasts for a while and make you

[00:44:38] [SPEAKER_01]: really want to get involved and come away with new ideas to improve your life so um we want to

[00:44:46] [SPEAKER_01]: help people get there we want to help them have these experiences and connectedness

[00:44:51] [SPEAKER_00]: I want to just briefly talk about your intake process when you're you know setting people up

[00:44:59] [SPEAKER_00]: for success but um outside of that I want to uh get into some of the details about how people

[00:45:07] [SPEAKER_00]: can reach out to you so let's let's walk through you know someone that is considering okay I want

[00:45:16] [SPEAKER_00]: to reach out you know to the limb preservation foundation and I want to see you know how they

[00:45:23] [SPEAKER_00]: can help me um how does that process usually start well honestly they can of course check us out

[00:45:32] [SPEAKER_01]: our website um and many people um learn of us just in an ad hoc way they learn about of course

[00:45:42] [SPEAKER_01]: assistance program we offer scholarships also for um people that are going through undergrad or

[00:45:49] [SPEAKER_01]: graduate or vocational education that they've been through something major in their life and

[00:45:56] [SPEAKER_01]: they're obviously trying to enhance their future with an educational goal we are and we help them

[00:46:02] [SPEAKER_01]: so the website does um basically walk you through some of the process for how how to learn about our

[00:46:13] [SPEAKER_01]: patient assistance program our scholarship program um we have peer support we also have

[00:46:20] [SPEAKER_01]: as we just talked about our symposium and the symposium on the patient side we we truly try to

[00:46:29] [SPEAKER_01]: keep costs low to attend um and then if you cannot afford those costs to attend we do offer some

[00:46:39] [SPEAKER_01]: subsidies to help you get there um so I would say that the website is a great starter

[00:46:46] [SPEAKER_01]: there's lots of information about the process let's let's get out that address um yeah it's

[00:46:53] [SPEAKER_00]: limbpreservation.org it's limbpreservation.org that's if you want to inquire you want to get a

[00:47:04] [SPEAKER_00]: some sort of a process started in terms of finding help learning more about the resources

[00:47:12] [SPEAKER_00]: that LPF offers um so yeah that's critical piece right there it all

[00:47:19] [SPEAKER_00]: sort of starts with the website that can give you information if you're just looking to stick

[00:47:25] [SPEAKER_00]: your toes in the water as long as you have toes right see I can make amputee jokes because I'm an

[00:47:31] [SPEAKER_00]: amputee um but also uh thinking about the symposium what is the actual date uh of the next symposium

[00:47:43] [SPEAKER_01]: it will be it's actually happens always during limb loss awareness month in April

[00:47:48] [SPEAKER_01]: it it will be April 25th um which is a Friday afternoon in golden colorado

[00:47:57] [SPEAKER_01]: the other thing that is wonderful for people is those people that really have come out

[00:48:04] [SPEAKER_01]: of the other side of the experience and also feel like they have some story to tell

[00:48:11] [SPEAKER_01]: an experience to tell that will benefit other people um we really want to hear from those people too

[00:48:19] [SPEAKER_01]: as our speakers and playing a variety of different roles so if any of the um any of your audience for

[00:48:28] [SPEAKER_01]: the podcast really just does feel um that they have some incredible story to tell um we really

[00:48:36] [SPEAKER_01]: want to hear from those people people who want to volunteer with us um you know it is a community

[00:48:43] [SPEAKER_01]: as you know it's a it's a special community um it's a smaller community and we really need to stick

[00:48:49] [SPEAKER_01]: together um and that is really what our uh you know our educational event is about is fostering

[00:48:57] [SPEAKER_01]: that community and that connectedness and everyone has some different skills and talents and

[00:49:04] [SPEAKER_01]: um has good things to offer each other that's awesome great way to wrap it up

[00:49:12] [SPEAKER_00]: marcie rubick executive director of the limb preservation foundation i want to thank you

[00:49:18] [SPEAKER_00]: for being here i would encourage everyone to check out that website get excited about

[00:49:24] [SPEAKER_00]: this symposium in april again marcie thank you so much for being here and spreading

[00:49:29] [SPEAKER_00]: some incredible just an incredible story incredible news about what your foundation is doing

[00:49:37] [SPEAKER_00]: and everything that we're looking forward to in the future that's going to wrap it up for us

[00:49:41] [SPEAKER_00]: my name is rick bonkowski this is the amped up 211 podcast and i want to wish everyone

[00:49:46] [SPEAKER_00]: health and happiness see you next time