Latest / Living Loud and Proud: Disability Conversations / Alliance for Headache Disorders Advocacy: A Chat with Advocate Roberta Boch-Parker
Transcript
- Phill Rosen Voice Over 00:00:00 Welcome to the Living Loud and Proud Podcast, brought to you by Disability Pride Pennsylvania. If you need a link to the transcript for this episode, please visit our accessible website at www.disabilitypridepa.org/podcast. And now, here is your host: Ellen Shimberg 00:00:28 Hi, I'm Ellen Schimberg. Welcome to Living Loud and Proud: Disability Conversations. I'm thrilled today to be able to welcome Roberta Boch-Parker, we're going to be having a conversation about the Alliance for Headache Disorders Advocacy. The alliance is advocating for equitable policies for those impacted by headache disorders. Founded in 2008, the A.H.D.A., is a nonprofit whose members include doctors, scientists, caregivers, and people suffering from migraines. We'd like to thank Highmark Wholecare for sponsoring today's episode. And without further ado, let me introduce myself, I'm Ellen Schimberg, the Chief Strategy Officer for Disability Pride Pennsylvania. And my guest, as I mentioned before, is Roberta Boch-Parker, an advocate and ally for folks with headache disorders. Roberta, I'd love to give you the platform to introduce yourself, say hello to our listeners, and then we can jump into our conversation. Roberta Boch-Parker 00:01:25 Hi, hi Ellen, thank you for having me here today. I'm really pleased to be able to speak, speak with you and to your listeners about migraine and headache disorders. I myself am a patient, I'm not one of the many experts that you that you listed there. But on some level, I do feel like I am a sort of expert. I've suffered from migraine disease for over 30 years. And my, my mother was a migraine patient and my daughter's a migraine patient. So you know, I have the patient perspective. But I also have the caregiver perspective also, you know, I had to deal with a lot in terms of doctors and health insurance, but also the education system, making sure that my my daughter got what she needed in terms of accessibility and yeah, and an access to school. So, like I said, I'm not a doctor, not a scientist, but on some level, I feel like I'm my own expert, of course on on my own own disease here. Ellen Shimberg 00:02:40 I know that from previous conversations with you, of course, you have migraines, you said your daughter and your mother, what, what got you into advocacy work? What was the sort of the, did you have a like a watershed moment that said, 'I need to do something more than just sort of consult with my physicians?' Roberta Boch-Parker 00:02:53 Well, you know, for years, I, of course found myself advocating for myself. People, there's a lot of stigma associated with migraine, people are not always very nice when they don't understand what's what's going on. Sometimes, sometimes they just look at you strangely, like, 'why are you wearing sunglasses inside? Why are you slurring your words? Are you drunk? You know, hey, you're at work, what's what's going on with you?' You know, so then I'd get feedback from other people, you know, learn that people are talking about me behind my back. And so, you know, I of course, didn't like that. So I take upon myself to try to educate others, you know, so, so I wouldn't have to hear about those things. But, you know, eventually, I learned to live with some of that, and, and it, and I did a decent job of educating the circle of friends or coworkers around me. But eventually, you know, my daughter was diagnosed with migraine, and it sort of started all over again, you know, I had to educate yet another group of people, and some of them included, like the parents of her classmates, but also her classmates. And, and actually, that was a bit of a challenge in teaching children about something like this, but you know, ultimately, it was during the pandemic with COVID. That's when I really felt the need to get get involved to help others. You know, I, so I also suffer from autoimmune disease. And so during the pandemic, I was not allowed to go out because I had a suppressed immune system. And so that was basically a rule for me. And so I couldn't get to the store to get things that I needed. And I started thinking about, 'well, that's just a rule in my case, but what about people who literally cannot,' you know, I wasn't allowed to walk into store but I thought about, 'what about somebody who literally cannot walk into a store? How are they getting the things that they need?' And it really opened my eyes. And so, you know, of course, like anybody else, I was doing a lot of online shopping. But once again, the accessibility kept popping up, because I did have some special needs, even in terms of online shopping. I have a special diet that goes along with autoimmune issues. And so I had difficulty finding things that I needed. Of course, we all heard about supply chain demand, that sort of thing. But, you know, when the prices started to skyrocket on these sorts of things, once again, there was, you know, the sense of inequity, you know, it's, these are things that I need to live, they weren't just things to tide over, you know, the, the, the boredom during the pandemic, this was, these were necessities that I couldn't get. And fortunately for me, they weren't dire. But once again, I started thinking, what, what if, what if my life depended on these things? And I started thinking about the other people who, you know, were not, and they were in more difficult situation than I was in. And so, you know, I just, I wanted to help other people. Because of that, it just didn't seem fair. And you know...(crosstalk, 6:29) Ellen Shimberg 00:06:30 That was the genesis for it? Roberta Boch-Parker 00:06:32 Yeah. Ellen Shimberg 00:06:32 I think a lot of times, what happens is we, you know, we go along in our life, and then we sort of hit a stumbling block. And that sort of opens our eyes to other issues that are that are carrying on, I know that my work with Disability Pride has made me much more tuned into how is the sidewalk blocked? If I was in a wheelchair, if I had mobility issues, how would I navigate this, and I think for those of us who think sometimes it does take the impact of something happening to sort of really open our eyes to see sort of what the inequities really are. And then we become aware of how unbelievably imbalanced so much of the stuff that we take for granted actually is. And so you are having a greater understanding of not only the issues about folks with migraines, but sort of the the autoimmune, and I think COVID really opened people's eyes to what our folks do, how have folks managed. Prior to COVID there's been a whole, there's been generations of people who've had access issues. And here we are, all these years later, still focusing on on some of the same things. Your, tell me a little bit about the advocacy work that you're doing. It was interesting to hear. And I wasn't aware of that migraines that young school children had migraines, and I can't imagine how challenging it must be for a younger child also to have a teacher who doesn't maybe understand, I heard what you said about people asking if you were drunk during the day, because you're suffering from migraine, I think there's a lot of stigma, I agree with you attached to it. So I'm assuming the approach to how we talk with young children and their teachers and how adults manage it are a little bit different. And how did you help your daughter navigate through this and her teachers and her peers and those other things, I think that'd be interesting to parents listening in, who have young children with with migraines and how you navigated that path for her. Or with her. Roberta Boch-Parker 00:08:06 In the beginning... Actually, in the beginning, we didn't know exactly what was going on, because it doesn't always present the same, you know, from so even amongst adults migraine can present differently from from adult to adult, but it does, it can and often does look different in children. And so she was about kindergarten age, when she started having migraines, but they were abdominal migraines. And so she'd complain of these horrible tummy aches, and, you know, we're we're looking at, you know, gastrointestinal type of roots. And here she was, you know, we came to learn that she was having migraines. And so you know, in terms of advocating for her at first, you know, you contact the teacher, but I didn't realize how prevalent the migraines would become for her. So at first it wasn't quite as difficult, you know, it was, you know, more of a concern for her comfort, that sort of thing, you know, letting teachers know, if she's complaining of symptoms like this or that, could you please contact me because it's a migraine, and, and so there were certain certain symptoms that it would be understandable that a teacher might overlook, but you know, just send her to the nurse's office and let her rest that sort of thing. But it did get to the point where they were routine enough that, at least I could recognize, so I would try to train teachers, because some, some of them would just let her you know, like, try to walk it off or, you know, try to push through that sort of thing. And, you know, these are things that would usually last for...an episode could be hours-long, or it could be days-long. And so, you know, I had to say to them, 'you know, like like cut the kid a break and you know, so she starts presenting with the symptoms, just just contact me and I'll just come get her.' So that's sort of how that, that started. But over time, the migraines became more frequent. And you know, I'd get emails about missed classwork and so forth, which, you know, is understandable, but sometimes there, there was like a little bit of attitude with the email, you know teachers are tired of it. Ellen Shimberg 00:10:25 I'm sure. Roberta Boch-Parker 00:10:25 And I can understand, you know, that does make more work for them. But, and so I had to reiterate, you know, this isn't a choice, she really is sick. And then I, you know, so they would believe that for a little while, but then they sort of came back again, you know, sort of questioning, you know, 'What's going on? Is she really sick?' And I said, 'Yes, she is,' and then it would be a matter of, 'Well, I don't understand, though, how can she be fine one minute, you know, she was just out playing on the playground. And then the students we get in the building, now she's sick.' And things along those lines. And so I'd have to explain, 'Well, she probably was fine on the playground, but she's exerting herself, or it's a sunny day, and those wonderful things actually triggered the migraine, and even the change in lighting from, you know, bright sunshine to, you know, fluorescent lights,' you know, so I said, 'Yeah, she probably was fine. And so, you know, these things that you're questioning are actually somewhat typical. And so once again, believe her when she says, you know, she's, she's having a migraine, or if she's in pain.' You know, there came a point where, you know, my daughter came to me in tears, because she overheard one of the administrators at her school calling into doubt, like the validity of migraines at all. And that was shocking that an educated person basically didn't even didn't believe in migraines. And so, you know, I received a few emails. And if I could back up a little bit, we sort of went through phases, you know, from from lower school, to middle school to upper school. So it was sort of like with each transition, I had to, you know, step in and reeducate a whole new group of people. And so, she, she overheard this, this comment and came to me in tears. And at that time, I guess she was having, you know, a spate of migraines. And so, you know, the emails started coming home that and, you know, there was a little bit of an attitude. And she actually got, I don't know, if they actually assigned her detention, but she was written up, so to speak, because she did go to the right place at the school, you know, they've sent her, sent her off, go see the nurse, because she has a migraine. Well, the nurse's office was full. So she was sent to the library, well, they couldn't find her, at some point. So she got in trouble for not reporting back to say, the nurse's office is full, so that, that's when I sort of, you know, really stepped up and went off on them and said, 'Look, you know, you're lucky, you're lucky, she went to the library, if that were me, you would have found me laying on the floor up against the lockers because these, these headache, the headache symptoms are debilitating, and you need to take her seriously. And also, it's really cruel of you to send her walking all over the building to find a place to rest.' And it just went back to you know, 'You should have just called me in the first place, and I would have come and picked up my child.' Ellen Shimberg 00:13:51 Come and gotten her. But you can imagine as, as, and I know that you've mentioned your thinking as, as parents if to kind of draw them on, go to the school and drop him off and go to the school. And I think this dovetails really nicely into the work that you're doing with the Alliance for Headache Disorders Advocacy. And you tell me a little bit about what that work looks like? And what is the sort of the the goal of the organization and their advocacy work? What do you guys trying to accomplish? Roberta Boch-Parker 00:14:15 Well, again, I'm just, you know, a patient advocate. And so I don't work for them, per se, but they did. I started with them, I suppose you could say in January, and that's when they started training advocates from all over the country. This year, we had all 50 states represented. And so, I mean, overall, the goals are to bring inclusiveness and equity, you know, to the treatment of migraine patients to reduce stigma, and you know, and you know, educate the general public as well, but in terms of the Headache on the Hill, which they've been doing, off the top my head...I can't remember how long they've been doing it, I think for 17 years now it's it's a long time, this past year was my first year participating. So. So I'm not sure how long they've been doing it. But you know, we went, we convened on Washington, on Capitol Hill, I joked saying, 'I'm taking my migraine to Capitol Hill.' And we met with legislative staff. So some people are lucky and they get to meet with the, the actual legislator, but their congressional staff, staffers were great to work with. And they listen to our asks, we have several asks, this year. One of them being funding for, for veterans treatments with through the VHA. And I'm happy to say that I believe they just released money for this past year. So the previous year's ask, came through. But while I was there, we're asking for next year. So just like regular people like myself, we're in Washington, DC, you know, lobbying. We're not official lobbyists, but we're lobbying lobbying Congress for effective change, for migraine and headache disorders patients. One of the things, again, this sort of ties into my own personal story, you know, I have, have a migraine interest. But, you know, once you start focusing on, on, on one interest like that, you know, it crosses over into other areas. And so, you know, one of the one of the apps was, we asked that they co-sponsor the NIH Clinical Trial Diversity Act. So, so for instance, a lot of women get migraines, and actually, a lot of indigenous peoples, I, I believe they're the ones with the highest population of migraine, but they're not represented in the research. It's usually white men that they study in terms of migraine, but they're not, you know, they're not the biggest population of migraine sufferers. But so, so in this case, we're asking for, you know, more inclusivity and diversity in the research trials. And again, that's not just for migraine research that's across the board for any kind of research through through the NIH. And so again, and asking for some help with our migraine situation, we're actually actually asking for help for others with disabilities. Another thing that we're asking for was the passage of the Safe Step Act. And again, it's, you know, we're asking in terms of migraine patients, but this is, again, something that helps anybody, there's basically like a trial and error procedure, in terms of getting medication. Like it's a fail first requirement that insurance companies require. So, there may be a specific medication for your particular disease. But your insurance company may not approve it, because they want you to try something else. We're asking that, like, let's let the doctor be the expert here. And if the doctor feels that, you know, you need a particular medication, that, you know, it should just be approved, you shouldn't have to jump through all these hoops. Like in my case, I went for several years through trial and error, trying all sorts of different medications. And they were not effective. And in some cases, they were sort of torturous. Actually, I had some real difficulty with them, only to be told, you know, 'we'll give it a little longer, give it a little longer.' And I was finally approved for Botox for migraine. And, you know, it was wonderful sort of working, working right away. And then I got a letter from my insurance company saying, you're no longer approved. And they wanted me to do the trial and error. So fortunately, unfortunately, because I had been through so much already, by chance, I already checked all those boxes. So they wanted me to go through the trial and error and here I had already done that. Ellen Shimberg 00:19:35 Would you say that your experience of not having a doctor's prescription be filled right away? Those kinda are typical for folks with migraines, where it's just not a, that they often have to jump through several hoops in order to get insurance approval? Roberta Boch-Parker 00:19:54 Things may be changing but yes, I belong to a few online groups in terms of these new migraine medications. And so, you know, you might see the commercials like, 'Hey, here's this wonder wonder drug. And you know, it looks like it's going to cure your migraine.' And, but a lot of people are saying like, 'Oh, I've had to fight to get the medication.' And so I believe it. You know, I've been fortunate for the past couple of years because I have a wonderful neurologist who kind of fights for me. So you know, when I, when I was denied, denied my treatment they were they were on it before I even knew what was actually happening. So but I, from what I'm hearing, a lot of people do have have difficulty with that, they are forced to go through it. And it's, I believe a lot of them are medications that aren't necessarily, you know, specific for migraine, but they have been found to be helpful (cross talk, 20:57) Ellen Shimberg 00:20:57 Botox being of being a prime example of a medication that was not necessarily originally slated for migraine and discovered to have multiple uses across other spectrums. Roberta Boch-Parker 00:21:07 Right. Ellen Shimberg 00:21:07 I know other folks using Botox and in ways that I know that had not been originally planned. The work and the advocacy work that you're doing in terms of having migraines sort of fall, I'm assuming as, as a disability, I'm assuming then that looking for accommodations in the same way under the ADA. So someone who has a migraine would need to ask for accommodations at work... Roberta Boch-Parker 00:21:07 Yes. Ellen Shimberg 00:21:07 ...and what those accommodations would look like. And I'm assuming it's individualized based on the person, there's not going to be a one size fits all for everybody, but a general policy about accommodations. Roberta Boch-Parker 00:21:20 It is and was school too. So for myself, you know, back when I was working, I did eventually have to leave my job because the migraines became too disabling for me. At the time, my accommodations were, were easy enough, you know, I was allowed to turn the lights off in my office, shut my door, that sort of thing. But for my daughter, she, some of, they gave her extra time for schoolwork, that sort of thing. She was excused extra abs-, absences. And again, referring back to COVID. One of the benefits to come out of that was that we did learn that accommodations are possible. You know, ironically, they were, they were offering people accommodations, people without disabilities were being offered accommodation so that they could continue working. And I know, you know, folks in the disability community spoke up and said, 'Oh, wait. You said that wasn't possible when I asked for that accommodation.' Ellen Shimberg 00:22:43 Right. Roberta Boch-Parker 00:22:44 But it is so. So you know, hopefully, you know, we won't revert back to the old ways. And you know, hopefully we can we can hang on to some of those accommodations. Ellen Shimberg 00:22:56 Can you tell me especially I'm referring to your daughter about universities, is migraine and does it fall under the ADA? I mean, how far have we gotten in terms of progress in terms of having migraines and other headache disorders falling under sort of ADA guidelines? And does she automatically qualify for accommodations because of that? Or is this something that you still have to fight for? Roberta Boch-Parker 00:23:20 I wouldn't necessarily say you have to fight for it. She's at University of Pittsburgh, Hail to Pitt! So you know, you you, you have to take the lead, you have to step up and explain your situation. But as long as you're doing that, they've been great in terms of working with her. So even, even when she was in, in school, before she went to college, she was actually at a private school. So they don't do the 504 plans, because it's private, but, but essentially, that's what her school was doing. And so, so it does fall under the ADA because it's not necessarily listed per se, but just by virtue of your own situation, you can demonstrate that it interferes with daily life, interferes with your studies. So we were able to demonstrate how the ADA was applicable to her. And therefore, you know, they they did offer her accommodations. And so she, actually, I don't know how, how the accommodations are structured on the University level, because she's actually doing a great job of accommodate, or getting the accommodation for herself. Ellen Shimberg 00:24:39 Being her own advocate. Roberta Boch-Parker 00:24:39 She's being an advocate for herself. Yeah. And so, you know, that was one thing she she did, you know, early on, she went and talked to the the Student Services Office, the Accessibility Office, and you know, she needed to file some paperwork, and things like that. But again, like in her case, it was more more so, like getting a note from her neurologist and they say, okay, you know, you know? Ellen Shimberg 00:25:09 Based on your, on your sort of interactions with other folks, your online support groups, what are yours? What is and I know that you're not currently working full time, but what sense are you getting from other folks about employers being accommodating to folks, you know, folks who need extra time or extra days off or sort of an accommodation at their workspace? And what kind of struggles are they, I dunno, they speak about it in your groups that you're a part of? Roberta Boch-Parker 00:25:12 A lot of the groups that I'm a part of, I do see people struggling, like asking questions like, 'How do I get accommodations?' Well, a lot of that is in terms of, I suppose, people filing for Disability, which is a whole separate conversation. Ellen Shimberg 00:25:57 Yes, it is. Roberta Boch-Parker 00:25:58 So, you know, I do see people talking about missing a lot of work. And but I have to say, like, with my own circle, I don't, I have a few friends who are disabled, but they're not working now. So they're not receiving accommodations. And so I don't really have a lot to compare it to. I know, even now, having had migraines for 30 years, people who've been, who've tagged along, so to speak, for 30 years still don't understand. And I'm not just talking about, like, they don't understand the pain that's in my head, which of course, you know, nobody can truly know somebody else's pain. But they still don't understand what what I go through, not only in terms of the illness, but just you know, day to day, day to day life, or you know, how much work it is to, to live with, with the debilitating disease. Ellen Shimberg 00:27:05 And I would assume that sort of, you know, there's y'know, triggers for migraines, but I would assume at times it just sort of comes without sort of, any warning. Which probably, makes it all the more challenging. What was the one thing that you would want anyone listening today, what would be some sort of takeaways about it you'd like us to know, besides the advocacy work you're doing, and about an understanding of, folks with migraines, and I'm aware that this is, you're not speaking for everybody. But just sort of based on your experiences, your child's experiences, and y'know the work that you're doing now that you've had a chance to do your first Headache on the Hill? What would be the takeaways? And what do we all need to learn from, from the experience? Roberta Boch-Parker 00:27:42 I think very simply, just believe the person, if somebody tells you they're in pain, or they're suffering, or, you know, whatever their difficulty is, just believe them at face value, and, and entrust them, that they're doing what they can for themselves. Sure, you can offer them a glass of water or a meal, but you know, trust that they know enough to seek help, you know, well, 'Well, have ya taken a Tylenol?' It's, you know, sometimes we're asked the silliest of questions, you know, like, 'Gee, I didn't think of that, I'm sitting here in excruciating pain, and it never occurred to me to try to alleviate my own pain.' So, you know, believe them. And, and trust that they are doing their best to, to not only take care of themselves, but to you know, to also, I suppose meet your expectations, you know, they're trying to work, they're trying to be a friend. And so you know, if they have to cancel, you know, a get-together with you, you know, don't hold it against them and, and know that they want to be with you, know that there's a lot of guilt involved with missing out on things. Just I don't know. Ellen Shimberg 00:29:04 A little more compassion for all of us. Roberta Boch-Parker 00:29:06 Yes, yes. Ellen Shimberg 00:29:08 Fantastic. Roberta, I want to thank you for your time today. For anybody who's listening who'd like more information, you can go to the website. It's the Alliance for Headache Disorders Advocacy, there's a ton of great information there. And I appreciate your giving us your time this afternoon. And to help educate everybody listening about the work that you're doing as advocate. We're all advocates for our disabilities. And we would love to come back in about a year and see the progress that you guys have made and the progress that the other folks with migraines and headache disorders are suffering at this time. Thank you so much. Roberta Boch-Parker 00:29:44 That would be great. That would be great. Ellen, can I just say one more thing. Thank thank you so much for giving me the opportunity to do this, because it just helps legitimize you know, to the outside world you know saying 'Hey, this is this is real. This is a real thing and you know.' I thank you on behalf of myself. Sorry, I might get a little choked up. Thank you on behalf of my late mother, who suffered for ages and thank you on behalf of my wonderful daughter. So thank you all to you and your producers. Thank you all. Ellen Shimberg 00:29:44 Well, thank you we appreciate we're all in this together fighting for a better more a-, more accessible world for everyone. Thanks, everybody! Phill Rosen Voice Over 00:30:24 Please visit our accessible website at www.disabilitypridepa.org. You can find us on social media @Disability Pride PA on Facebook, Instagram and TikTok.