Rachel Byrne (RB) - Hi, everybody. It's Rachel Byrne here. The Executive Director of the Cerebral Palsy Foundation. We are excited to be having a great conversation today. I'm really excited. We're gonna be talking about pain and chronic pain, and pain across the lifespan, everything to do with pain. So we hope that you will all join us. We'd love to get as many questions as possible coming through. I can see we've got a lot of people. Hi, Tracy. Hi, Johnny. Hello, Rainbow Center Charity. Hi, Elizabeth. We will just be waiting for Mary to join us. So Mary is a Physical Therapist, but also has a very much an interest area in looking at pain, and particularly looking at issues that affect adults across the lifespan. So very excited to have you join us. And I will just join you in. And we've got some great questions already, which is amazing. Let's see. Sorry, just waiting to see... Need to be able to go live with Mary. Now Mary you're on here as Elizabeth. I can see that, but I'm not able to include you. If you can add here, we can see that you're here. Oh, here we go. Fingers crossed that one works. Apologies, it should be coming through. Yay!
Mary Gannotti (MG) - Yay! Thank you so much, Rachel.
RB- Sorry, that was my... Thank you for coming and joining us. That was my bad technology on my end.
MG- Oh, I have no doubt. It was my bad.
RB- No, no, it totally wasn't.
MG- I'm so excited to be here, and I don't want to waylay the conversation, but I'd really like to talk about pain and adults with CP.
RB- Absolutely.
MG- Rachel, did you know that most of the people alive today that have CP are over the age of 18?
RB- Absolutely. And we hear the statistic all the time. It's the most common childhood disability. Well, children grow up, and we actually know that there are more adults living with CP than there are children with CP. So 100% percent-
MG- Yes.
RB- We need to talk about this. We need to focus on it. And we're gonna dive a bit deeper as to why some of this stuff is important to collect information around, because I think we need your help, really. We need people who are watching this. We need our community to help us be able to the outcomes.
MG- You know, Rachel, I was thinking, what do I wanna say to today? And I really only wanna say it in a few sentences. I've been working with researchers at University of North Carolina Chapel Hill, Michigan, so on and so forth, wonderful universities. And we know it's a problem, but what we need is answers. And we need directions to tell NIH where to go, and we can't get that unless we hear from the people.
RB- Absolutely. And so for those of you who don't know, NIH is the National Institute's Health. So it's the major funding body for research across all different disabilities, diseases, all those different things. But absolutely somewhere where we want to go to, to get some of these major dollars for research funding.
MG- Yes, absolutely. But the NIH over the last decade, has been really listening to consumers. I mean, they've listened to consumers in the past, but usually only those with dollars, like the Kennedy's. And thank God for the Kennedy's, and Switzer, and Roosevelt in the strides that we made in early decades. But now we need to figure out more information about helping people with pain with CP. And I see some of the question, help people with chronic pain that CP live with. Well, first of all, Rachel, there's lots of different types of chronic pain.
- And just to put it out there as well, the statistics, the evidence right now, but we don't really know, it shows that about 60% of adults with CP will have some sort of pain, chronic pain that they're dealing with every day.
- Oh, and those statistics are underreported.
- Yep.
MG- Because you know that when we do statistics, were very picky and we don't even really count the people that don't have have voices, whether they can report themselves or if they need a proxy. So those are underreported. And I saw that there's new evidence that now they're really focusing on children once again. Everyone's looking at my myofascial, I'm a my mother of a child with CP. Okay, so let's talk about the different types of pain. There is-
RB- Absolutely.
MG- Yeah, because that's what you need to figure out, is what kind of pain is your person are you having, is it a pain that's maybe centralized? So it might actually be from the brain and require some sort of trans magnetic stimulation, or some other types of therapy to really get at where it's at. Is it something that's musculoskeletal?
- Yep.
MG- Whereas it's actual joint pain, because it's joint malalignment? Is it something that has to do with muscle fatigue? Is the dyskinesia spasms? And then when you can identify that, then you have to the etiology, that's where you can really look at what is most helpful.
RB- And do we know, like, knowing the small amount that we do know, obviously there are some therapies and things that can be done.
RB- Yes, first of all, I see the comment that "In my experience, the majority of people don't know much about, doctors don't know much about CP."
MG- Particularly, a lot of population, we hear that all the time.
RB- And I think you highlighted this with the Women's Health Project, really people being as astonished that people with disabilities have a sex life.
- Yep.
MG- Like, that they're not a complete human being. Well, these people with CP, of course they have pain probably early on, and of course, into adulthood. And we know there's this phenomenon, we're not quite sure of the physiology of it has to do a little bit with a mitochondria, a little bit with the glucose transport. Some of it has to do with the physical inactivity, but it's a combination of effects that cause this accelerated aging. So in my experience in talking with people with adults around age 25 is where sort of, you know, sort of when your car hits 120,000 miles.
RB- Yeah. No, definitely. Back to this sort of person's point, the majority of doctors don't know very much. But that sort of comes back to the point on why we need to put more research out there, why we need to get more answers, and why we need to have people's stories heard. Because that's the big point of this conversation today as well, is to encourage people to share their stories.
MG- The most compelling thing are people's stories, a victory or sorrow to really highlight an epidemic. And I would call this an epidemic. That I think some of the things... I have one of the things that I do do is I teach a lot about childhood physical therapy-
- Yep.
MG- And I wanna upturn it. Let's focus on health and fitness. Stop doing some of the things that are gonna destroy your joints.
RB- Absolutely. And think about the long-term outcomes. And I think-
MG- Think about, is it the cost-benefit ratio of removing your... Having a laminectomies, or in terms of an SDR, or these procedures. Look it, she wants to share her story.
RB- We would love to hear your story. Now there's some other questions as well, but before we get to those, 'cause there are just some things that I wanna talk to you about. One thing is, we haven't really introduced you properly and told people your story, who you are, and what you do. Can you just give a little bit of an intro as to your background?
MG- Okay. So yeah, my name is Mary. I am a Physical Therapist, but at the same time, I trained as a Medical Anthropologist. Really interested in social justice issues, particularly in the third-world, because kids with CP weren't getting anything. And was really involved for a long time in working on developing programs in Latin American and the Caribbean for young people, infants and adults with CP. And then went back, evaluated, and then decided that, what are we doing at our hospitals here in the US where I think we have the best care ever-
- Yeah.
MG- And I compare my adults in Jamaica, in Mexico to my adults in Springfield Mass, and I say, "Wait a minute." And I decide that if I'm gonna work with one of the best institutions like Shriners Hospital, then I need to help guide them for their programs on how to treat children with CP across the lifespan. So we've developed a lot of fitness programs to improve self-esteem and musculoskeletal health, and really handpick the kids that need surgery, intensively treat them afterwards. And hopefully with our Yale program, which is a kin the Columbia program, we can serve the adults with CP better in the community. That's my interest is, how can we do right here? What we say that we do so great. How are we incorporating folks?
RB- Yeah. How are we actually doing it. We've spoken about that not long, but it's in another topic. But I think you brought up a really wonderful, almost comment around health and wellness. This isn't about fixing this. This isn't about changing something to fix something. This is about health and wellness, and being able to live your life, and all those elements that make life wonderful.
MG- In medical anthropology, my beginnings are in the Disability Rights Movement with Nora Groce, who helped with the American Disabilities Act. And a lot of really great advocates in... New England is great for academia and advocates. So I've had that pleasure. And so everything I do is with the chagrin of my girlfriends who have graduated... Lisa Blumberg, who's graduated from Harvard. And she has written beautiful essays on Boston Children's Hospital, "House of Cards" and living in the "Ballpark Normalcy." And we co-authored a paper on happiness of adults with CP and compared it to PTs. We all want the same thing. Everyone wants to feel good and be with their family. And I think it's a real big social injustice that people with CP are seen as subhuman. And look, we have medical marijuana, the CBD rubs work really well.
- Yep.
RB- People wanna talk about actual treatments, I think.
RB- Yep. So, no, but I think it's the way that we're talking about treatments though. And I think this is where we have conversations and have had conversations in the past. Treatments are evolving, and the way that we are thinking about what these outcomes of a treatment are going to be is really important. But yes, people do wanna talk about treatments, 'cause I've got some questions. And we might start off with Nicole. Nicole's asked a question, "Why is my endurance and pain worsening with age despite going to PT, moving in and taking prescriptions?" You touched a lot about that before, but this whole idea of aging and what happens to our body.
MG- Yeah, and functional time decline and endurance. Well, one of the things that I've really embraced is the work of Noelle Moreau. She talks about how you can actually structurally change the muscle with power training in CP. And by structurally changing the muscle, you're able to move quicker. And for function, and you need quick movements.
- Yeah.
MG- And that power training actually gives you some sort of muscular reserve. So what we would say is maybe your PT is not training you right.
- Yeah, these are conversations-
- We always want-
- That you should be having, because some PTs actually have the experience to understand it.
- What's happening-
RB- No, you have to inform them.
MG- With the muscle in CP.
MG- So Noelle Moreau, I mean, I'm sure that we can... We actually-
RB- yeah, we can swipe up and share all resources that we need to share. So people can find it.
RB- Yeah. We can do a little tag list later.
- Yeah.
MG- But we have several articles, and just talking about power training. I have a fact sheet for the, what is it called, The ACSM, the American College of Sports Medicine.
- Yeah.
MG- Health and fitness for people with CP that gives you prescriptions. You need to always be aware of spinal stenosis. I don't know what your functional level is, but depending on, or if you had a dorsal rhizotomy or otherwise, but this is something... Do you want me to talk about spinal stenosis?
RB- Yeah. Yeah. 'Cause this is something that's probably come out and become... Well, people have been aware of it, but there's probably more to talk about it now in the last couple of years, which is great. And it really does lead to functional decline. And you may not be aware that it's actually something in your spine that's causing this.
MG- Yeah, your spine can be... Yeah, talk to your PT and them, it's a two-way street. You know your body best, yes. And if your endurance is flagging, look and see what's going on with your muscles. You might not be training them right. You might be overusing them. Another thing that I've talked to my friends was CP about, was kind of like a old bitty over fifties women's club. We talked about this energy conservation. We'll use a scooter during the day, and then she had a dorsal rhizotomy. I mean, there's nothing wrong with this. Some people think it's great.
- Yeah.
MG- But some people end up with back pain, and some people have problems afterwards, but you have to rule all those things out.
RB- And then, so we've got another question for you as well. Okay, aside from PT, how can I manage my spastic pain and work on my endurance?
MG- Well, I mean, one of the things that we... Movement, movement, movement, right? Is that's what it feels therapist is gonna say. Someone said-
RB- Were both physical therapist, by the way. So anyone who's... We kinda smile at each other 'cause were very much, we think the same way.
MG- Very much think the same way. Nutrition is key. Hydration is key.
- Absolutely.
MG- But what I like is yoga. I mean, some people might not like that. But for spasticity, what you wanna do is actually these muscles, if you can work them dynamically and strengthen them, then you can, that can control some of that spasticity and alleviate some of the pain.
- Yeah.
MG- In terms of the back pain. Now, one of the things that we think that I haven't scientifically proven, but we would like to investigate with the back pain is the hamstring lengthening. I have girlfriends at 75 and above. Yes, please. More treatments for dyskinetic CP. So can I say, talk about my CP and what we wanna do?
- Yes.
- Okay.
- I've got two more questions to ask you first.
- Absolutely.
- 'Cause I just don't wanna miss anybody.
MG- No, there needs to be... So there's a lovely series of articles about pain and dyskinetic disease.
- And we'll share.
- Yes.
RB- Particularly sometimes with articles, and we'll talk about ways that we can make sure people can access the information. 'Cause one frustrating thing about general articles is sometimes you need to be registered to access them and things like that. But the information that we'll give you will give you summaries. After all of this, we'll make sure it's available to everybody. But the other question that I have, so there's two questions actually. So somebody's asking about pain medication. Obviously, pain medication does exist, and what's your thoughts around that, and does it work? I suppose that's the question is. Can there be pain medication that works on a spastic muscle?
MG- Well, it depends why you have, that's why you have to figure out why you're having pain.
- Yeah.
MG- Some of the folks with dyskinesia, they're having these dyskinetic sort of spasms and then that causes pain, so maybe they need to control that.
- Yeah.
- So you need to really talk to your dog doctor. Now the open-
MG- And find a doctor who has, I suppose, the understanding of what's the underlying issues that are going on, particularly with cerebral palsy NHE.
MG- And I think that being able to talk to people about evidence-based treatments, and being able to talk to other people. So really Rachel, I mean, I think that the knowledge is so infantile, germane, embryonic about this, that we can help each other. But going back to the origin of the pain with the opioids, I mean, opioids are highly effective.
- Yeah.
MG- But the problem with opioids is they make you constipated. And for women of a certain age, that's an issue. And if you don't walk, that's an issue. So that creates a whole host of issues. And then there's the possibility of addiction, and then all of that.
- Yeah.
MG- Now I think that if you have... I mean, I have my dear friend texting me all the time on the phone all the time with his 70 degree scoliosis, and I heard somebody there with the back pain.
- Yeah.
MG- Well, we know what helps. One trainer on the arms, and one trainer on the legs, and we do some traction. We know the exercises, but we just have to make it accessible.
- Yeah.
MG- And he does the medical marijuana and he does the CBD, so it has to come up with a combination of things that works for each individual with their bowel movements and what kind of supports they have.
MG- It's how things interact with other medications. When you're thinking about how and why, and then what works, you just sort of reiterating that before we sort of dive in, I think to MyCP and asking people for help. But I think when we are thinking about why, you think about, as you said, "Is it in the brain? Is it in your muscles? is it in something that's happened in your joints or bony? Is it actually apetitional picks?
RB- Is it a brace?
MG- Constipation can be very painful. There's other different things that can happen.
MG- This dysmenorrhea thing-
- Yeah.
MG- Is terrible for women. So there's lots of reasons. But the fatigue and the overall decline, there are physical therapy interventions. I believe high intensity training, power training, yoga, are the ways to go. I love the CBD rubs. And some people even take the pills.
- Yeah.
MG- I don't know if it's legal or not.
RB- Make sure you talk to your doctor, that's the main thing.
MG- Yeah. Oh, definitely.
RB- Talk to your doctor about these different things, and find out the regimen that's gonna work for you. I think this is where... Let's dive into this a little bit. But you're not alone, like that is the thing. There are so many individuals like yourself who are experiencing pain, and we need to work out how we can do that better. And if you're not alone, how can they come together as a collective? And I think this is where your sort of research interest really lies. Because one person's story, that's really important. Two people's story, that starts to become, "Okay, this looks similar." But if we can get thousands of people's stories, then that's really developing something that's really quite amazing, incredible, and hasn't been done before, particularly for adults.
MG- No, isn't this exciting? So let's talk about how we can do that. So we're very fortunate there's sort of a collaborative organization called the Cerebral Palsy Research Network. And we're really interested in collecting data, high quality clinical and patient reported data, so that we can improve clinical practice, particularly around this huge gap for adults with CP.
- Yeah.
MG- So mycp.org is a website, it's a forum, and you can share your a story. So we have a series of questions that you can answer if you're an adult with CP.
MG- And we'll send the link to that survey. So this particular survey around adults in pain, we have shared before, we shared it about 12 months ago. So some of you may have already completed it.
- Yes. Thank you.
RB- For those of you that haven't, we would really love to hear your experience.
MG- Because I think that, and I always tell my students this story, I know it's rather gross, but I tend to be that way, I'm a scientist. You know how they discovered about toxic shock syndrome for women with tampons? From one story, then there was two stories, then there was three stories, and then there was a federal law.
- Yeah.
MG- So let's find out where people's pain is, what helps them feel better and why they think they got it? And then we can start doing clinical practice trials to make a difference.
- Yeah.
MG- But we know there's lots of tools out there, but adults with CPR are different than people that don't have CP, because they have sort of this accelerated aging process and a lot other biomechanical stresses. Right, Rachel?
RB- Yeah. No, absolutely. So if were talking about what's required of them, the adult pain survey that they would be filling in, what information do you wanna collect on that?
MG- So first of all, we just start off and ask people general demographic information, because it's really hard in research if you don't have that information to make any conclusions about who's at risk for what?
- Yeah.
MG- And then screen people if they have pain or not. So you can get sort of a baseline of a prevalence. That so far we have what, 60 to 70% of the people that have answered in MyCP have chronic pain. And then those with chronic pain where it is, and sort of like, "I wish at times I could ride a bike." Riding a bike is a great idea. I'm very distractable. I shouldn't look at that. And your PT should be able to help you. I think riding a bike is really good. What would the aging process be for someone with CP? Well, we can talk about all those things in a minute. So anyway, coming back to MyCP, you're gonna be filling out these questions and asking detailed about your treatments, and what helped and what didn't help. And then in the end, we just wanna put a paper out there to say, "Look everybody, we really need to do something about it. And if you're gonna do fund any research about CP, let's include the points of view of the adults with CP, alocate to help or prevent and maintain it." All right. A non-verbal, my daughter, she-
RB- I think this question's actually really important. So it's, my daughter is six and non-verbal, I always worry that she may be in pain but is unable to tell me, is there some sort of daily exercise? Now, this obviously isn't just in relation to a child who's six, this could be for adults as well. Particularly if your person, you're a parent or a caregiver, for somebody who is nonverbal, and some of those cues are difficult to understand sometimes, it's really important that their voices are heard as well, because we know that. But what are some of the things that we know of, other than we know that the statistic is high? And so the probability is there, that they probably are in some sort of pain. But is there any, I suppose people wanna know how come they help. That's the biggest thing.
MG- Well, you know, I'll have to go to this research that was done by my colleague, Cindy Dougs. And all of the individuals that she had in her project were nonverbal and they were in chairs, and she took them on with the support staff on a daily program, and that out in the community. Well, of course, there's, COVID now.
- Yeah.
MG- But in terms of an activity program and showed changes on the CP child, which is a measure for parents that take care of children that are nonverbal and severely involved. So what I would say to this family, and we have these children at our Be Fit program at Shriners.
- Yeah.
MG- Is that having a routine program of whatever that they can do for movement. And again, I looking at the American College of Sports Medicine for the recommendations for physical activity-
- Absolutely.
MG- Which are 150 minutes a week and more, if it's hard to move. And stretching and, and so forth, and strengthening a couple times a week. What we would recommend is that you do, no, the survey is for anybody across international, we have a lot of New Zealanders.
RB- It's for, if you're all right? So there is a couple of little consents. So we're really looking for adult data. I think two weeks ago, we did actually a survey for infants. We will make sure that we cover all different age groups. So right now we're looking for adult data. Because as we've said, there are so many adults who are in pain who are not getting their stories told, and change isn't happening. But we're also looking for somebody who can complete the survey with their own answers, is that correct?
MG- Yeah, I mean, we understand that people might have to have someone read it to them and push, match or whatever, but we want people's own individual answers. And that's because in research, you have to treat those two types differently, but we of course want to hear as much as we can from people there. What happens is when you fill in the information, it will guide you to what surveys are appropriate for you. So even if the parents go in there, there might be something for them, but we're really looking right now for the adults. We would really like to hear what the adults have to say.
- So the other question that I have here, I spoke COVID-19-
MG- Well, so for that parent, if I answered her question. So try to build, and again, I can share this little schematic with Rachel, our colleague, Olaf Verschuren, did it in the Netherlands. It's a schematic of how to build in activity across the day.
- Amazing.
- Yeah, and that's gonna-
MG- And we'll share and we'll make sure all these resources are linked out through here. They'll also be linked out on our new resource, cpresource.org, which is super exciting. We're trying to actually have a place where you can go and get all this information in the one place. It's an evolving resource so we're gonna be adding to it all the time, but this is the sort of thing that we wanna make sure is there so that everyone can get it. I've got question for you though, 'cause during COVID 19, just quickly before we finish, you mentioned obviously previously it was about trying to get out and get active and get social and be outside. If you can't do that right now, and it's definitely something that I just didn't want to ignore, because a lot of people are sort of trapped inside their homes, and I'm using the word trapped because it does feel that way.
- Yeah. It's depressing.
- Yeah.
MG- And what has happened to me, I'm a professor and my academic curriculum is built around my students providing services to individuals with disabilities in community settings. So we really have to shift and see how we can help families. And I was able to talk to some parents over the last few weeks and what, and look and hear in chat rooms. We really need to make more videos, and the physical therapists and others are really called to try and do some sort of telehealth and recommendations.
- Yeah.
MG- And it's not the same. The other thing is, we know, I mean, if you have someone that needs assistance, I mean, you need assistance, you don't want a Zoom call. So I think that we need to really make some strong recommendations for when people can come into the house and help, or provide recommendations for exercise equipment.
- Absolutely.
- You know, like, I was gonna try and show you my little exercise room that I'm sitting in.
RB- But yeah. But that's sort of now what we are doing, right, we're sort of creating these things at home. The other question that I had you, you mentioned some of the programs that you've got going on at Shriners, are they available to others? Like, can people access them from outside of where you have?
MG- What we're trying trying to do is sort of spread it. And I know that people have sort of mimicked it. And it's a really simple model of using students in the community to work one on one with individuals with cerebral palsy, either in a gym setting, or at a university setting, or at the hospital setting. So we have a program at our university. We have Chapter 126, which I think you know about, which our gym, for people with disabilities by disabilities in Connecticut, and then at the Shriners hospital. So I have my students in three different community settings.
MG- And maybe what we'll try to do is so people can see what that community gym looks like. 'Cause as you said, it's been designed by people with disabilities, for people with disabilities. I don't know when we're able to, we might do a walkthrough, and we might try and do like a live sort of, I don't know. So people can see, because I think sometimes you then need to ask for that where you are, and say, "Look, I know these things exist. I know that people are doing it. How can we work together to do something similar?"
RB- Yes. And what also might need to happen is that you might say to a hospital, "You have this gym, you need to serve your community and allow us to join." Yes, CBD cream. If you have joint pain it and muscle pain, it's really good. It doesn't have THC in it. Someone says she takes CBD for sleeping. Yes, that is helpful. So yeah, chapter 126-
- So it's readily available now, you know?
- Yeah, it's very available.
- They've been able to make that into a therapeutic treatment, is amazing.
- Yeah.
MG- Just to finish off, so everyone, please we need your help for collecting this information, getting the survey done. We're gonna share the links. We'll put it on our story so it's an easy swipe up. If you haven't enrolled and you are experiencing pain, please do so if you know friends that are experiencing that, please share it, because we need your help. Well, this is something that we can't do. We've got the anecdotal evidence, I suppose. We've got the qualitative stories, but now we need some of these hard evidence so we can go to somewhere like the National Institutes of Health and say, "This is really important. We need funding dollars associated with it. Here's a study. Let's get it done."
MG- Yeah, and I hear the voice that the gyms are very limited on accessible equipment. There are also have really weird rules if you bring your PCA, your personal care assistant, and they might make you sign liability forms. Those things need to stop, and we need to have inclusive gyms. I mean, I was really excited when we built Chapter 126 for people, by people with disabilities, but it was like, "What the heck? Why can't you just go to people-
- Yeah, you shouldn't have to have something separate.
MG- Closer? I mean, they made it in New Britain, and it was so far away, there was no bus. So we need to get those dollars, not for research, but for gym equipment.
MG- No, but I think this is how this all connects together. And this is probably our ending statement is that advocacy work. All that sort of initial pieces, that all feeds into research, research feeds into different therapy, and that changes the community. And we need this whole circle and this life cycle of everything that's happening to be connected, so that research isn't disconnected from advocacy. And clinical change, isn't disconnected from best evidence, all those different things.
- Yes, and that your tax dollars are actually serving you.
- Yeah.
- Because the information that we have gotten, it hasn't been published yet. I think it's in print or review. From looking at claims data, the rates for all of these secondary conditions are so much higher. It's about quality of life and cost of care.
RB- And I see Jennifer Lyman has joined us. And so she's saying, "ACL has grants for this." So these are different things that's like, "Let's come together and get these grants and get them happening and get something to the community that needs to be there."
- That would be so fantastic.
MG- Yes, Railey, I think they give me a weird look. We hear that story too many times as well. It needs to become the norm that everybody is in the same place, and it is truly inclusive, rather than this sort of segregation that is still occurring.
MG- Yeah. This is probably really rude, but if you know me, you'll say, "It's okay." If you were cross-dressing or if you were trans, would they give you the same weird look as if you were in a chair? It's just like, "Come on."
- Yeah.
- We're accepting all people-
- Yes, absolutely.
- Of all races, all types of gender expressions, who cares if they can walk or not?
- Yeah.
- Let's help each other.
RB- Yeah, Evan, and we hear you, that you are one of the very few wheelchair users in the gym. Absolutely. So we need to get into the gyms. We need to make this sort of a community-based settings. And I think the great thing is, is talk to your therapist about that as well. Talk to your doctors about, "I wanna do this in a community setting." And I think that's something that we all need to do. Therapists also need to get out of the hospitals and into the community.
MG- Yeah, and if there's any entrepreneurs on the call, this is the new big business opportunity. Opening gyms that are inclusive.
- Yep. Absolutely.
- Go team CP!
RB- Please if anyone has another question, send it through. And for all of those who that said that they would love to share their stories, obviously the survey is one way to share their stories, but also we would love to share your story on here. Reach out to us at the foundation, send us a private message, and we'd love to share your experiences and your stories and start making sure your voices are heard.
- Yeah. And really good stories can provide really good insights.
- Absolutely.
- So we'd love to hear them. And please google-
RB- Mary, it has been... Oh, okay. Just quickly, can you give a good idea on easy tricycles to use?
MG- Oh, there's lots of great tricycles, but the best one is usually Rifton.
- Yeah.
MG- I did hot yoga and that. Oh, yes, hot yoga. I'm so, yoga, hot tub massage, that's part of my life and I don't have CP. I think it should be part of everybody's life, right?
RB- Well, it's that idea of health and wellness, again. By bringing in those sort of concepts rather than saying, "I'm just going to go to the gym and lift weights." Obviously, power is very important, but what are the other components of health and wellness that make you feel good?
MG- Yeah, and sometimes going to the bathroom is one of those. And opioids, don't allow that.
RB- Yeah. No.
MG- So yes. Please try mycp.com. We would love to get that information on your specific pain experience, and send that out to the clinical community so we can start doing some relevant research of what the best treatments are. There's a start for some, for sure.
RB - As I said, we'll put that in our stories. We'll put it in a couple of posts as well so it'll be easy. You can just swipe up.
MG- Thank you so much.
RB- Awesome! Thanks so much, Mary. It's always a pleasure
MG- Thank you.
RB- To talk to you. And obviously, if anyone has any questions that we didn't answer, also just put that in our DMs and we'll make sure we get that to you.
MG- All right, thank you so much. Bye-bye.
RB- Bye everybody. Thanks for joining us.
MG- Bye.
RB- All right, bye.