TRANSCIPT
Jason Benetti (00:06): Welcome to Let's Talk CP, the new podcast series about all things cerebral palsy, presented by the Cerebral Palsy Foundation. Each episode features different clinicians, parents, people with CP, and other experts talking about ways to help you better navigate your journey with CP. I'm Jason Benetti, play by play announcer of the Chicago White Sox and ESPN. And I have CP.
Cynthia Frisina (00:34): And I'm your host, Cynthia Frisina, the Vice President for the Cerebral Palsy Foundation, creator of National Cerebral Palsy Awareness Day and most importantly, mom of two wonderful daughters. My youngest daughter, Catherine, has CP and is the reason I got involved for advocating for CP research and other families. On today's launch episode, I'm so excited to have two incredible people on with me, two incredible moms, two incredible advocates, Wendy Sullivan and Jennifer Lyman. They're also really good friends of mine and friends of the foundation and the CP community. Wendy and Jennifer, welcome. So glad to have you here today.
Wendy Sullivan (01:17): Thanks for having us.
Jennifer Lyman (01:20): Thanks, Cynthia.
Cynthia Frisina (01:22): Awesome. Well, first of all, before we even get into today's episode and what we're going to focus on, it would be great for our whole community to have you both introduce yourselves and tell us a little bit about who you are and why you agreed to be on this podcast with us.
Wendy Sullivan (01:39): Thanks, Cynthia. I'm Wendy Sullivan and I, too, am a mom of a daughter with cerebral palsy and she is now 18 years old, so she's not a child anymore. She has a form of cerebral palsy. It's called left hemiparesis because she had a stroke in utero, and I'm very thankful to be able to be a part of this. And I know I wish I would have had a conversation, or a place to go, when I was working with Kelsey growing up to learn more about cerebral palsy and issues and medical opportunity.
Cynthia Frisina (02:17): Yes, I know. That's part of the reason that we wanted to do this podcast and have moms like you, parents like you, on with us, is to provide a lot of information and support that we never actually had when our kids were very young. Jennifer, let's hear from you a little bit about your background, and thank you again for joining us today.
Jennifer Lyman (02:42): Oh, my gosh, thank you, Cynthia and thank you, Wendy. It's great to hear both of your voices. I'm also a mom of a 16 year old now, [Valor 00:02:53]. He has quadriplegic CP, specifically mixed spastic [dischronic 00:02:58] cerebral palsy. He also has optic nerve hypoplasia and cortical visual impairment, pretty significant speech issues, but in general, he's awesome. He's happy, he's healthy, he's into fitness, and it's neat to see a kid, people think of him as disabled, and I always say he's healthier than so many people I know.
Jennifer Lyman (03:31): His CP is due to periventricular, the damage to the white matter along the ventricles of his brain that occurred shortly after he was born premature 15 years ago. And yeah, I'm just thankful to be part of this and be able to share our story, and share with what we've been through over the past 15 years, and hopefully provide some guidance for new families, and even older families. I think we're all going through this together and we're all learning constantly about new tricks and ways to navigate the journey.
Cynthia Frisina (04:10): Absolutely. You two are probably some of the most knowledgeable parents I know, when it comes to navigating a CP journey, and that's one of the reasons why we wanted to have both of you on as our very first guests for our brand new podcast.
Cynthia Frisina (04:27): Today families are consuming information in all different ways, videos, fact sheets, websites, word of mouth, social media, and podcasts are a newer genre for cerebral palsy. Jen, you just started an awesome podcast called CP Health. And the Cerebral Palsy Foundation also is now wanting to really provide more information for families in bite sized chunks. And our series that we're kicking off and launching our whole podcast initiative is called, What to Expect. So we have the first three episodes are going to focus on what to expect when you go to the doctor with your child, as well as what kind of questions to really ask your clinician.
Cynthia Frisina (05:18): And this is going to cover a range of important topics, including understanding cerebral palsy better, spasticity management, how to interact effectively with your clinician, especially questions to ask when a clinician or a provider recommends a specific treatment or a procedure. It really can be overwhelming and confusing for families. So we're bringing in the experts with you two today, the parent experts that so many families are going to want to hear from.
Cynthia Frisina (05:52): The first question I want to ask to both of you is we've heard a little bit about backgrounds, but you both do so much more in addition to just being a parent, and being a mother. You're both very active in the field and wondered if you could share a little bit about what you do in the cerebral palsy community. You've been both been doing things for a long time, and what made you decide to do that? So, if you briefly could both share a little bit about that. I know families in our community would be really interested in hearing that. Jen, why don't you go first, we'd love to hear your story.
Jennifer Lyman (06:34): Sure. Well, I don't know if it's fate or fortune or what the universe worked for me. Before I had Valor, I was a case manager for kids with pretty significant disabilities in therapeutic foster care. Prior to that, I was a recreation therapist with children with significant disabilities. I also worked with adults with cerebral palsy, and had worked in group homes, and on the ski slopes, and did a lot of research in dance and movement.
Jennifer Lyman (07:12): And so I almost feel like my life was meant to raise a kid with a disability, I don't know. I just feel so fortunate to have Bower, and to also have experience on the other side, as a case manager, especially. And actually as a recreation therapist too, because I really... The focus on participation and the focus on physical activity and things like that kind of came easily to me, I think a little bit easier than it has for my husband, but the case management part really, really was helpful, especially early on.
Jennifer Lyman (07:53): So, that's how I got into it. And then moving forward, you guys have both been involved with the Cerebral Palsy Collaborative, which we all started together to help with the work that you were doing, Cynthia, and Wendy, both of you all, to advocate for the appropriations language in the federal appropriation bill for cerebral palsy. And really getting all of the different nonprofits to work together, to sign off on this letter for this advocacy.
Jennifer Lyman (08:26): And then last year I went back to school in health education. Just because I felt like I wanted to learn a little bit more about how to be more effective and... Wendy you're the past Chair, and I'm the current Chair of the American Academy for Cerebral Palsy and Developmental Medicine. [crosstalk 00:08:46]
Cynthia Frisina (08:47): It's incredible, what you both do. That's amazing.
Cynthia Frisina (08:53): Wendy, let's hear a little bit more about why you decided to get more involved and do all the extra things that you do in the CP field.
Wendy Sullivan (09:05): Sure. So I, before having my children, was in the healthcare industry, I was in the pharmaceutical industry and worked with physicians and called on hospitals and doctors in a lot of different areas, neurology, psychiatry, nephrology, but nothing that had to do specifically with cerebral palsy.
Wendy Sullivan (09:28): And after Kelsey was born, I was quite interested to find the latest research on what was being done, related treatments... And as I did the searches, what I normally would do in the pharmaceutical world, in which there are double blinded, placebo controlled trials, I didn't see much of that. I felt that this was a place for me because, one, I knew that it would benefit, hopefully, my child and children for many, many years to come. So it became a passion of mine.
Wendy Sullivan (10:02): So I then was an Executive Board Member of Reaching for the Stars, and we've done many trips to Washington DC. And now I'm a Circle Advisory Board Member at the Cerebral Palsy Foundation, and continue advocacy work, and also continue online community council of the AACPDM, as Jen had mentioned.
Cynthia Frisina (10:24): Awesome. So you two are the best parents I can think of to help us launch this podcast. And I want to jump right into questions that many of our families have. As you know, the Cerebral Palsy Foundation has a large social media presence on Facebook and Instagram. And we get questions all the time from families.
Cynthia Frisina (10:44): And one of the burning questions that families ask us, and you two, it would be great to be able to provide your opinion and your insight on this is, what advice would you give to families, especially those who might be earlier on in their CP journey, children of any age, but those who are early on and haven't navigated this whole process yet, in terms of questions to ask their clinician in an appointment? Especially, how do you prepare effectively for these appointments? How do you really recommend, from your experience, setting up those appointments and asking questions, especially if a clinician is recommending a treatment or procedure that you're not familiar with?
Cynthia Frisina (11:39): Jen, I'd love to hear your thoughts on that.
Jennifer Lyman (11:45): Sure. Well, I guess I'd like to start out with, before you even see the clinician, when you call to schedule the appointment, I highly recommend talking to the scheduler and asking for an extended appointment, in advance. They'll automatically, usually when you call to make an appointment, they'll set you up with a 15 minute appointment with your doctor. You're going to need longer than that.
Jennifer Lyman (12:13): Make that appointment the 45 minute appointment, that the scheduler might need to ask your doctor, or make a separate phone call and get authorization to do this, but it's well worth it because it will let your doctor know in advance that you've got a lot of things to talk about. It will also allow them to block a bigger chunk of time, so they won't feel rushed. And, I feel like the conversation, once you get in with your doctor, will be easier and it won't seem as rushed as some of these 15 minute appointments can really feel. So, that's my first little bit of advice. However your institution or physician's office does this, just make sure that you ask for that extended appointment.
Cynthia Frisina (12:57): That's such a great suggestion.
Jennifer Lyman (13:00): Thanks. I guess there's two things, I really do recommend writing questions out in advance. Both your questions and your thoughts, so bring a notebook or whatever it is that you use, if it's on your iPad, or iPhone, however you take your notes, make sure you have your questions written out, and also have your information written out. And have a kind of an ongoing... Start thinking about it from prior to when you make your appointment, just have an ongoing work of things. If they come to mind when you're driving down the road, pull over and write it out. Is there certain equipment that you need, that you think about and forget about when you're not using it? Is it time for your child to get new orthotics? Is there something, a gait trainer, or something else, that you're going to need a prescription for?
Jennifer Lyman (13:58): These things take a lot of time to get approval. And the physicians have got a lot of letters that they've got write, and coordination they have to do. So knowing in advance, that these are requests that you're going to need, are really helpful to be able to have written down and raring to go when you get in for the appointment.
Jennifer Lyman (14:18): I guess another thing that I've really... This is the case manager in me, I did this for all of the children that I did case management for, so I feel like when Val was born, it was ingrained in my system. I created a binder. The first page of the binder is a list of all of my son's doctors, always ask for their business cards. So yeah, I've got a business card section on there as well, but just the typewritten list of all of the doctors, their phone numbers, their addresses, all of that kind of stuff.
Jennifer Lyman (14:59): The second section is our goals. At the time when we first created the binder, we had birth to three kinds of things. So we had an individual family service plan and we wrote out the goals for him. And I had that in there. And then after that, by body system, I have his medical records. I know a lot of people are using electronic medical records, but I still, to this day, I use the unfortunate name, instead of a scrapbook, it's a crapbook. And everybody gets a chuckle out of it, and you got to laugh when you're carrying around a four inch binder of medical records. But it's been tremendously helpful over the year. So those are my main things in preparing for the appointment and-
Cynthia Frisina (16:03): That brings up a great question that I have for Wendy, because I wish when Catherine, my daughter, was young that someone older, and wiser, and been around the block, had told me the things that you just said, Jen. I didn't know at the beginning to do all of those things.
Cynthia Frisina (16:21): But Wendy, I have a question for you. And that is, one of the things I think so many families struggle with, at any age, but particularly at the beginning is, what advice do you have of how parents should go about even finding the right clinician, or clinicians, for their child? I think the terms are confusing, physiatrist, neurologist, orthopedic surgeon, there's so many different kinds of providers and clinicians that parents may not understand the difference between them all. And then who do you go to?
Cynthia Frisina (17:03): Wendy, what's some of your advice, as you've navigated the past 18 years with Kelsey, to other parents about how to think about finding the right set of providers for your child? What are some of the steps that you might recommend of how a family might go about that?
Wendy Sullivan (17:26): Yeah, that is a great question because there is so much, as cerebral palsy is a term that can be over many, many, many disciplines. I was writing down, as Jen was saying, because my binder turned into... I just kept them in folders, so when I walked in, I didn't scare the doctor, because there were so many. We had ophthalmology, neurology, neurosurgery, orthopedic surgeon, PT physical therapists, occupational therapists, vision therapists, speech therapists, it becomes overwhelming.
Wendy Sullivan (17:57): But I do think trying to find a really strong quarterback is one of the... And I'm using that term loosely because they kind of help the team go where they're going. If you can find a pediatrician that is knowledgeable about cerebral palsy and can help direct you at first navigate to specialists. Sometimes if they are in with one of the larger health systems in an area, they can help maybe get your appointments a little bit earlier with a specialist, I know at first.
Wendy Sullivan (18:31): Sometimes you really want to start seeing people to get help, and you'll make a phone call, and they'll say it's three to four months down the road, six months down the road. And that just doesn't seem acceptable, especially now that we know that the earlier you can get intervention, the better off children can be many times if they are doing that.
Wendy Sullivan (18:51): So I would maybe interview a couple pediatricians. I know there are also developmental pediatricians, that was a little challenging for me, I didn't seem to find a lot of help there. But my pediatrician was pretty good at helping us see, and being that quarterback, looking at different test results and saying, "Okay, let's be sure to get you into neurology, pediatric neurology, neurosurgery," and kept all the things together in one place, and would do a good job. Every so often, just having a little meeting, like, "Okay, how's everything going at all of these different specialties?"
Wendy Sullivan (19:30): I think there's a lot more rank ratings on the computer now and reviews, but there definitely are some doctors that are better than others, either bedside manner, or specialize in certain areas better. And I felt like, after I talked to another parent that had a child with cerebral palsy, that maybe had a child with cerebral palsy that also had the visual impairments, that it just made a big difference finding the right doctor. And having doctors recommend doctors is helpful sometimes too, because they know their colleagues [crosstalk 00:20:05] they might know who might be...
Cynthia Frisina (20:08): Yeah. That makes a lot of sense. Now what's interesting, and Jen, I would be interested in your thoughts on this is, as we know, different parts of the country, different cities sort of handle developmental disabilities and CP in particular a little bit differently, it seems.
Cynthia Frisina (20:26): And Jen, I wonder if your experience being in a different city was different, in terms of how you navigated finding a right set of clinicians, or thinking about it in general? And I know that you also didn't necessarily stay in your city for medical care, and you considered other options as well. Are there any suggestions in addition to Wendy's great thoughts that you had in terms of selecting clinicians and putting together a care team?
Jennifer Lyman (21:04): I might have to pause. I apologize, my son is having a rough time right now. I apologize.
Cynthia Frisina (21:13): That's okay, that's part of the process.
Jennifer Lyman (21:16): I know.
Cynthia Frisina (21:18): It's a real moment in podcasting, we're good with that.
Jennifer Lyman (21:22): Let me run into his bedroom real quick, and just check on him.
Cynthia Frisina (21:24): This is real life, and this is why we wanted moms on our podcast because everyone can relate right now to this whole situation. So, Jen, do you want to collect yourself for a moment while I ask Wendy a question, or...?
Jennifer Lyman (21:39): Yeah, sure.
Cynthia Frisina (21:40): Okay, That's what I'm going to do. So, Wendy, I do have another question related to that. So many times our different clinicians and providers recommend a specific treatment or procedure that we may not be familiar with. This happens pretty much to all of us, at some point in our journey. It could be a procedure like botulinum toxin for spasticity, or it could be a surgical consideration, or a vision consideration, or physical therapy recommendation, or whatever it might be.
Cynthia Frisina (22:18): But are there questions when a clinician makes a recommendation like that, for example, botulinum, toxin injections, or something that's going to be maybe more invasive, are there questions that you recommend that a parent could ask of a clinician to help get a little bit more clarity to that procedure or that treatment that's being recommended? We get asked this all the time.
Wendy Sullivan (22:50): Yeah. I think it is hard to understand sometimes the scope and the... So I do think there are some things to ask that can be helpful. Usually the questions are, how the procedure be performed? How long will it take the day of? How long will the recovery be? What type of results should I expect, high and low end?
Wendy Sullivan (23:17): I also find that a nurse sometimes can be a little more descriptive than a doctor, and might have some more, especially with surgeries... I think a lot of times, not on purpose, surgeons tend to say, "Oh, you'll be better in three days." And the nurse will be like, "Oh, you'll probably be more like a week before it starts feeling better." Because they hear more of the phone complaints, so I think some of that is helpful.
Wendy Sullivan (23:44): And then again, I do think going back and doing some research and being able to ask other parents, and I did find getting a second opinion, and sometimes a third opinion was helpful.
Wendy Sullivan (24:02): And if it had to do with things like botulinum toxin, or other orthopedic type surgeries, physical therapists... Kelsey's pediatric physical therapist or occupational therapist also had a lot of good information and had usually seen and been part of the recovery team for them. So I felt like getting a number of different data points from different people that are working with my child was very helpful for me. And then, like Jen said, writing them down and making sure to make the best decision that you can for your family and for your child.
Cynthia Frisina (24:45): I think that's such great advice because I think one thing that parents of children with CP struggle with, I know that I did, and I know that we've all discussed this as well is, early on when recommendations are given and treatment procedure information suggested, is that research is hard to find and best evidence, and whether things are FDA approved or not, or... It seems like many clinicians, you could go to 10 of them ,and they're all going to give maybe a slightly different recommendation of what they think is best for your child, or how they might do a specific treatment.
Cynthia Frisina (25:32): Jen, I don't know if you're back with us.
Jennifer Lyman (25:35): Yes, I am. I absolutely agree with everything both of you guys said. Yeah, it seems like everybody does things a little bit differently, and every child is a little bit different. I think that's part of the struggle with research and CP is that it's so varied. Cerebral palsy is so varied that it's really hard for them to come out with specific standards and techniques that's going to work for every child, what works for Kelsey, may not work for Valor.
Jennifer Lyman (26:13): So really having that team approach and discussing it with the physical therapist, the occupational therapist, as well as whoever it is that's doing the botulinum toxin or the boning procedure, or the tendon lengthening, or whatever that may be. And really having that understanding of what the expectation of the outcome is supposed to be. I feel like that's a really important conversation that I think the physical therapist should really be having with the families. You know, knowing what your child's GMFCS level is, having an understanding of that. And then having that conversation that really says, "What is the goal of this?"
Cynthia Frisina (27:01): So, Wendy, I really want to focus in on your best advice you have for other families when it comes to interacting with doctors or therapists. If you could put yourself back in your early shoes, what is the best advice that you feel like you could give other families, that you really wish that you would've known back, then that you know now?
Wendy Sullivan (27:31): Well, there is a whole thing around seeing doctors, and you have to remember, it's all about your child and you are there to advocate for them, but you need to be on the same team as your physician. So you do want to ask the hard questions, but it is a team effort. And one of the things that I remember is how exhausting doctor's appointments are. Especially if you do travel out of state and maybe see a couple of different doctors, or even if you are in state and you're going to see a couple doctors in the same day, or in two days back to back. So I would encourage that, first of all, prepare a little bit for that, take a snack, have favorite toys, all those types of things, mentally prepare yourself.
Wendy Sullivan (28:17): And then I do think that it is important to remember that you are an advocate for your child and you do know your child best. And doctor may have a lot more training in certain medical areas, but you as a parent know that child. And I don't think that there is much more than a parent's intuition can give, so go with your gut always. I think that is so important. And if something is telling, this is not right, or this is not what I think is best for my child, then you can always pause.
Wendy Sullivan (28:54): This is a journey, and it's a marathon having a child with cerebral palsy. So, I think that is important to have some mental preparedness, have a team for yourself. And so when you talk to the doctors, make sure that... Express yourself and if you don't feel like they're understanding what you're saying, ask, and say, "Can I explain that again?" They are people, and they are in their profession, so they do want to help children get better.
Wendy Sullivan (29:25): So those are just some of the things that I thought of, off the top of my head, but... And have a support team behind you, if you can. Even though you're talking to the doctors, even before you go, maybe talk it over with a family friend, or your significant other, someone, just to make sure you know what you're asking before you go in and that it makes sense. So you can explain what you want to say. That would be helpful as well.
Cynthia Frisina (29:55): Awesome. That's such great advice.
Cynthia Frisina (29:56): Jen, how about you? Do you have other suggestions or advice? Your best piece of advice for parents, other families, someone else going through this same journey, that you've learned, that you really wish you would've known earlier on, and you know now?
Jennifer Lyman (30:13): Well, I think Wendy is right on with the team approach, and I do really feel like that is the most important. I think you asked me earlier, we did travel a lot for my son, trying to put together a team. And my outlook on it was I wanted to find, for each different aspect of our need that my son had, I wanted him to find a person who was doing this research, truly had invested their career in the specific area that we're looking at. And it definitely involved meeting some personalities and I found people that know so much about whatever issue it was that we were facing. But as the family, we are the advocates for our child and we're sort of the team leader. We're the quarterback in that respect.
Jennifer Lyman (31:15): And especially if you're going out of state, if you're going to different doctors around the country, you are having to carry a lot of that load of communication between the different entities. But I really do stress that everybody's on the same team here, and if you feel like you've got a personality conflict, or it doesn't feel right, it's okay. There's lots of other doctors out there, and you can always find somebody else to fit better with working. But I think that's really important and not to be afraid to try somebody else out.
Cynthia Frisina (31:54): That's great advice, both Wendy and Jen. One thing that I realized we didn't address, which would be great to hear both of your perspectives on this is, we didn't really say or explain why a care team is useful and valuable for your child.
Cynthia Frisina (32:12): I know that when Catherine was first diagnosed, I didn't even know to think about that. I didn't know what a care team was, or for a child with CP, why that was important, why there would be providers or clinicians from different disciplines that might be useful to all be on Catherine's team.
Cynthia Frisina (32:35): Would you have some thoughts about that for other families, of why a care team is important?
Wendy Sullivan (32:42): For me, Kelsey's cerebral palsy, like I said, she had an interventricular hemorrhage before she was born, that's primarily the biggest thing you... If you saw her, you would think, "Oh, she has a limp on her left side, and her left arm is affected," but come to find out some of the bigger challenges was her cortical visual impairment. She had some other eye issues that impacted how she walks even without the limping, without the noticeable part on the left side. So it was really important to have vision, and physical therapy, and occupational therapy because it is a whole child. So having a care team I think is probably mostly important because cerebral palsy affects so many different parts of the body and we all think of it, it is a motor skill disability.
Cynthia Frisina (33:40): How about you, Jen?
Jennifer Lyman (33:43): Well, it was funny, I was kind of hoping Wendy was going to answer the question first, because I remember how significant the vision issue was for Kelsey. Wendy, I remember you telling me this years ago and that, I believe I'm correct, they didn't realize it initially. And it wasn't until, I think you picked up on it, Wendy, and you realized, "Wait a minute, her vision is impacting her more than the physical part." And so it was you that pulled that together. So it really goes back to the importance of mom knows best here.
Jennifer Lyman (34:19): But yeah, I feel the same way as Wendy, it's nice to have specialists who can look at vision, for example, or at hand use, or at how the child copes in certain situations, or a behavioral psychologist to... If you can get all the different opinions and pull them together, and sometimes it makes things more of a mystery, sometimes it gets confusing. But I think it's helpful. Honestly, I feel like, as the parent, we need them to have as much information as we possibly can. And if we bury our heads in the sand and don't seek out the information for our child, then we can't advocate for our child the way we need to.
Cynthia Frisina (35:12): Both of you have been so fantastic today. And I think we can all agree that in the last decade, there is so much more support, and information, and research, and collaboration in the CP community, than there was 10 years ago, which is wonderful. And I so appreciate, on behalf of the Cerebral Palsy Foundation, and really our whole community, that you two were guests today. This has been fantastic.
Cynthia Frisina (35:40): I would encourage that everyone join the conversation with your family, with your friends on social media, let us know what you'd like us to cover, what kind of guests we can have on our podcast.
Cynthia Frisina (35:55): Our What to Expect podcast series is made possible in part by the support of Ipsen Biopharmaceuticals.
Jason Benetti (36:03): Thanks for joining us for this episode of Let's Talk CP. I'm Jason Benetti, CPF ambassador, and sports television announcer. If you like our show and want to know more, please visit our new CP Resource Page @cpresource.org, where you can listen to all of our episodes, and subscribe so you'll never miss a show. While you're at it, if you found value in Let's Talk CP, we'd appreciate a rating. And please tell a friend or another family member about the show to help others and increase cerebral palsy awareness, and education. Be sure to tune in to Let's Talk CP for our next episode.
**This podcast represents the opinions of our guests and the content should not be taken as medical advice. Each person and situation is unique. So please consult your healthcare professionals for any medical questions.