Griswold’s Solution Series uses a proprietary SolutionsMiningTM Methodology that researches current literature, social media and blog mining, non-profit, and a live webinar to present tools to assist with those living with disability or aging challenges. This unique approach will utilize ‘brain writing’ and audience participation to highlight best practices and resources for those living with MS.
Derek: Good afternoon, everybody. I hope everybody’s having a great day. My name is Derek Jones and welcome to our webinar today. We’re very excited to run the webinar titled “The Invisible Side of MS: Managing Psychosocial Barriers”. This webinar is part of Griswold’s webinar solution series.
March is MS awareness month and we’re very excited about the content of this presentation. We want to first acknowledge anyone who might be living with MS, family caregivers, health care professionals and all the non-profit and advocacy partners who may be here on this call today. You are certainly a big piece of why this webinar was put together and personally, for Griswold Home Care, our founder started Griswold Home Care after she was diagnosed with MS. So we’re happy to have you here today and we acknowledge everyone on this webinar, whether you’re a health care provider, a professional caregiver, a family caregiver who may be dealing with MS or someone who might be living with MS, we believe the content and the structure of this webinar will be very useful to everyone here today.
Our goals for today are to uncover the invisible symptoms of MS and provide solutions for managing them. This is part of Griswold’s webinar solution series, which is very different from most webinar that are out there today, which is why we’re really excited. The first thing that we’ll do is we will review Griswold’s SolutionsMining process and then we will present tools and solutions to help address any issues that might be affecting those with MS and psychosocial barriers.
I do want to mention that today the webinar is being held right here in downtown Philadelphia at 17th and Market Street at the Greater Delaware Chapter Valley of the National MS Society. Here in the room today we have Kelly Walker, MS Navigator with the Greater Delaware Chapter of the MS Society, Chris Kelly, Kelly Howard, and myself today. Again, if you were to walk into the chapter here actually at the Greater Delaware Chapter, you would see a sign right on the front door that says, “We want to do something about MS now” and that’s why we’re here today, to provide practical solutions for any of the attendees who may be on the webinar today.
With that, I’d like to introduce our two presenters. Kelly Walker is an MS Navigator with the Greater Delaware Chapter of the National MS Society. I’d like to turn it over to Kelly to do a short introduction of herself. Kelly, welcome to the webinar.
Kelly: Thank you. Hi, everybody. I’m glad you’re all here with us today. As Derek said, I am an MS Navigator here at the Greater Delaware Valley Chapter of the National MS Society, which basically means that I work directly with our clients. Our clients are those people that are living with multiple sclerosis. What I do as an MS Navigator is I speak with those people and try to help connect them to different services and resources. So those services and resources can range from home modifications to help them get around their home to counseling services to education, a little bit of everything and what we maybe can’t provide for them here at the Society, we try to find someone that can.
Derek: Great, thanks, Kelly. Our next presenter is Chris Kelly. Welcome to the webinar, Chris.
Chris: Thanks, Derek. Good afternoon, everyone. The first thing you should know about me is that I am really fired up for this webinar. I’ve been working in the field for about 25 years and this is a really unique opportunity and one that I’ve not come across before. As Derek mentioned, it’s MS month. I’m actually presenting across from an MS Navigator at the Greater Delaware Valley Chapter and the other exciting part is just the diverse audience that we have, a tremendous mixture of caregivers, clients, franchisees, healthcare providers.
I actually spent the early part of my career working as a recreation therapist and as a counselor. I’m really fortunate to have spent some of those years working with people living with MS and saw firsthand how important this topic is and just really, really appreciative to be here and share this webinar with you.
So we’d like to start off by talking about our themes and our process. The term “SolutionsMining”, dissecting this term from the standpoint of solutions, we really wanted to focus on tools that solve problems. If you think 15 years ago, it was really difficult to find information, particularly if you were a client or a family caregiver. Today, thanks to organizations like the National MS Chapter, there’s so much information that it takes a lot of energy and effort to find the information that you need. We wanted to take those tools and bring them to you.
From the standpoint of the mining theme, we wanted to make sure that we were committed to mining for core, timely barriers, things that are really unique, current facing the MS community so we’re really excited to share some of this with you today. In terms of our methodology, we have four key layers. The first, lit review, which is really diving into the peer-reviewed journals. The two reasons for this, number one, they’re reliable. There’s a lot of rigor that goes into research design. The second very exciting reason is that we reviewed 10 articles and came away with a sample size of 10,000 clients and caregivers. So a two-hour review of articles resulted in findings from close to 10,000 clients and caregivers, which is terrific.
Our next layer is social media, so taking a look at the blogs and discussion boards. We reviewed 500 verbatim subjects, which we’ll talk more about. The benefit here is this is raw, unfiltered, patients, clients, caregivers going in asking questions that are relevant for them. Once we identified our core theme of the invisible symptoms of MS, we reached out to Kelly Walker and her team here at the National MS Society Chapter in Philadelphia. They’re working everyday with clients and caregivers and healthcare providers and we wanted to validate the barriers, if this barrier is relevant and current, and we also wanted to make sure that there was an opportunity to partner and share some of the tools and best practices that we came about.
Then finally the last layer is today, is really the solutions webinar and toolkit. We wanted to share our tools with you, but probably most importantly, we also wanted to learn from you, learn from our audience through an exercise that we’re going to go through called “brain writing”. So before we actually go into our findings, Kelly, we were wondering if you could provide a brief overview of MS for those who are newer to the condition.
Kelly: Sure. Thank you. MS is thought to be an autoimmune disease that affects the central nervous system. It is a chronic, unpredictable disease, as I said, of the central nervous system and it has no known cause or cure at this time. It generally reaches people between the ages of 20 and 50. So people are generally diagnosed between those ages, although you do see younger people and much older people that are being diagnosed with MS. It does tend to affect women up to four times more often than men.
Here on our next slide you will see kind of a simple picture of what happens. Basically MS damages the tissue surrounding the nerves, called myelin, and a good analogy for this would be a power cord and that rubber around the wires, when that rubber is worn away, those wires can become frayed and damaged and they short circuit. So when you’re plugging in your computer with that damaged rubber cord and the wires are exposed, they tend to short circuit and your computer doesn’t work right. Well, the myeline protection on those nerves, when that gets damaged through multiple sclerosis, it kind of short circuits those nerves so any messaging sent to and from the brain can short circuit and that’s what causes the symptoms that people feel from multiple sclerosis.
Chris: Thanks, Kelly. That’s a great analogy. Anatomicals can be very complex and it’s great to share an analogy that people can relate to. So let’s dive in now. As I said, our first layer of research was through peer-reviewed journals. We have two articles and quotes that we wanted to share that we think are really powerful. The first, the title of the article is “Predictors of Quality of Life Among MS Patients”. The author, Bassem Yamout, published this article January of this year. The study included 201 clients and caregivers and really the quote says it all and I’ll read it. “The quality of life in patients with MS is not solely determined by physical disability, but rather by the level of social support, living area, depression, level of education, employment, fatigue and religiosity . . . we suggest that these should be evaluated in every patient with MS as they may be modified by targeted interventions.”
I think it’s important as you look at some of the aspects of quality of life that are captured here and think about the traditional office visit, how difficult and complex it is to bring up some of these ideas and then to also have the time to work through them. So this was the first quote that sort of drove us through this theme of invisible symptoms.
The second article is entitled, “Invisible and Visible Symptoms of MS: Which Are More Predictive of Health Distress?”. This was authored by Carmel Parker White from East Carolina University and, again, this is a study that included a survey of 145 people, clients and caregivers who were living with MS. Again, a very powerful quote, “Invisible symptoms may be more troubling to patients than visible symptoms and we should ensure that adequate screening and treatment are provided for those with MS.” So a couple of key points here, first, we have no intention to minimize the impact of visible symptoms. They’re obviously extremely difficult and in many cases contribute to some of the invisible symptoms that we’ll talk about today. What I found from this research is that the visible symptoms are seen, discussed and validated as part of the office visit and interactions with a prescriber or specialist, whereas the invisible symptoms, in many cases, are not discussed.
So what we try to do is build on this theme of screening and assessment. We did some research into some of the proven models for psychosocial assessment. We found several in the nursing field, the social services field and also in the health education field. What we tried to do here is pull out some of the key components of psychosocial assessment. So as I’m going through these, if you’re a healthcare provider, these are things you want to look for when you’re working with clients and caregivers. If you’re a client or caregiver, these are the things that you want to make sure that you’re reflecting on and sharing.
Starting from the top right, we want to look at values, emotions, beliefs and attitudes. Some examples are anxiety, depression, the uncertainty and fear that can come with a diagnosis and starting a new treatment, for example, anger, isolation. The second area of assessment is knowledge, the understanding of MS and particularly how to self-manage. This really drove this idea of solutions and tools. There’s a lot of great information about what MS is. We wanted to make sure that we were focusing also on the actions that people can take to self-manage between office visits.
The third level is confidence. Again, an area not often discussed. Confidence, number one, in the diagnosis, in the team that a person is working with, in the treatment that they’re starting and then overall in their ability to manage MS and the treatment. You know, it really helped me to think back and how often we actually assess for confidence and ambivalence, particularly when someone is leaving an office visit. Then the next area is support network. Pretty obvious but just the (?) for access and awareness of family, friends, peers and non-profit organizations.
Then finally, aside from the direct issues related to MS, what is going on in the surrounding environment. Are there financial challenges, competing needs? Life doesn’t stop. There might be someone else in the family that has another health condition or this person might have another health condition. Then finally, access to care and services that they need.
So another key area from our lit review was this concept or perception of a disconnect between prescribers and clients. We want to make sure that we’re emphasizing here when we use the term “disconnect”, there is no blame. We have already captured the complexity of the invisible symptoms. On the prescriber’s side or the healthcare provider’s side, there are time constraints. In many cases, medications have been prescribed and, rightfully, we have to make sure that a person’s responding well and that we’re talking about any side effects that occur. But having worked with prescribers and all levels of healthcare providers, people care, people obviously care. It’s just not an easy topic to discuss.
On the client or caregiver side, there’s a huge reluctance to talk about these issues due to stigma. You might have patients and clients that aren’t aware that they’re having these challenges. Some are aware and may have sort of a stoic perception that they’re just going to fight through it. Then there are other people that just can’t find the words. We often hear that they have the issue but they struggle to articulate it. So, Kelly, we were wondering if you could describe how some of these symptoms present for people in your role as a MS Navigator.
Kelly: Sure. So most of the people that come to us, most of our clients have already seen a neurologist and have talked about the physical symptoms, which can range anywhere from paralysis to mild tingling and dizziness and anything in between, really, cognitive issues, depression. There are a lot of physical symptoms. When our clients come to us, they may be coming to us to request one, specific thing, one service such as needing durable medical equipment like a wheelchair or a walker. Of course we try to assist with that.
When we do have the time to spend with that client and talk to them a little bit more about what maybe their other needs may be and in doing that, some clients are more upfront than others but in having those conversation with the clients, we often find out that the needs are not just physical and that there are these, what we’re calling these silent symptoms of MS, and we’re able to uncover these a lot of times in these discussions with out clients. Those range from everything from fatigue and working and trying to figure out how maybe they can get accommodations at work so they can continue working or they’re worried that they now need a caregiver and their loved ones are their sole caregivers and how can we help with that and how can they manage that.
So there are a lot of these kind of psychosocial or silent symptoms that maybe not the reason why the client comes to us initially but then in speaking with them after awhile and developing a rapport and relationship with these clients, they come to surface. We can help with some of the physical things too by providing things like durable medical equipment, but we also try to help by providing counseling and home care and their management and those sorts of services to help the other side of things.
Chris: Kelly, I know when we were talking earlier you had mentioned, we talking about this disconnect in the dialog. Can you talk a little bit about why, just from your perspective, why a person calling an advocacy or a nonprofit organization would feel a little bit more comfortable talking about some of the psychosocial or invisible symptoms versus the discussion in the doctors office that tend to be more about the physical symptoms?
Kelly: I think a lot of times our clients come into the office and sometimes we meet them outside of the office. But a lot of times too we’re on the phone and sometimes it’s easier to have those conversations over the phone, I find, with clients or for anybody sometimes it’s easier to have that difficult conversation over the phone. I think also because we ask similar questions, not just physically how you’re feeling but someone calls and they sound unhappy but they’re saying that maybe they need financial assistance for something, we ask more questions to try to find out what’s going on, what their needs are besides just the physical needs, if maybe counseling would be appropriate or if they need some other kind of support or if there’s some programs that we have or some educational materials that would benefit them and help them understand what they’re going through a little bit better.
Chris: Awesome. Thank you. So the next slide is really capturing our final lit review findings. We wanted to call out that the Center for Disease Control has emphasized the importance of a term that may be new to some of you called “healthcare extenders”. They’re defined as providers really working on the front lines to extend the care team and primarily focus on psychosocial issues.
So what we’d love to do, we’re really fortunate to have Kelly Walker here as an MS Navigator purely because of the triage that we’re trying to depict here on this slide where we’re showing the healthcare provider with the client and then you see the MS Society logo. We would love to sort of talk about this visual and how the client moves from their initial discussion with the prescriber to the call in to you, Kelly, at the MS Society and then how you would triage and work with the different healthcare extenders that are listed here.
Kelly: Okay, great. So a lot of times we get calls from our clients. They will probably initially call our 1-800-FIGHT-MS number, which is our information and resource center, a lot of times, just to get general information and to get signed up with us, become a client, and we’ll get some news here at the chapter that there’s maybe someone in our chapter that needs some help and we reach out to them, a lot of times, as I said before, maybe certain things, very specific things. But in speaking with them we realize that maybe there’s some other things that we can help provide or get them in touch, maybe, with some other services.
So as a Navigator, that’s exactly what we’re trying to do is help the clients navigate through these systems. So when they come to us, if they’re saying they’re having a hard time falling, we would ask if they’ve talked to their neurologist about physical therapy or occupational therapy. If so, then we try to set up that service for them. If they express some anxiety or some depression, then we try to put them towards counseling services and help provide that but it goes both ways. We try to provide them with resources but we also receive a lot of information from these other resources that are (?).
So outside of trying to propose care and care management and that sort of thing, we also get a lot of referrals from social workers and discharge planners and neurologist officers saying that this client, after we’ve assessed them, is in need of these specific things. So a lot of times, from my perspective, we’re the point person that maybe starts the process but there’s an ongoing conversation between all these entities. There’s a lot of back and forth and everything from helping our clients maybe find out where their local yoga studio is if that’s something they’re interested in.
The information resource center, once again, can help them locate these things. We can put them in touch with the service that they need. As I said before, one of the things I think is important is that when our clients call maybe with one specific need, we do try to talk to them and maybe assess what their other needs are and going back to the silent symptoms, if we do feel that someone is in need of counseling or maybe some support, we do try to provide that and we try to make that all part of our overall discussion about all of the symptoms and taking care of everything, not just the physical side.
Chris: And, Kelly, just on the topic, I’m sure this occurs where you might get an incoming call from someone that might be living alone or might need more support in the home versus outside the facility, could you talk a little bit about those discussions and how you helped those people?
Kelly: Sure. So the Navigators try to be proactive, so for speaking to someone I keep using this example of durable medical equipment but that does speak very much to the physical symptoms. So someone calls and says, “I need a certain piece of equipment because I’m living at home and I’m having a hard time getting in and out of the bath tub and bathing myself and cooking for myself,” then we try to help with those things but then we have a further discussion with the client about whether maybe there’s some other help that we can provide them or look into for them. We have that discussion with the client.
We also, as a chapter, as an office and in our services department, the Navigators in the services department get together and talk regularly about how we can help this client as a whole, not just maybe the one, specific thing that they filled out an application for but when we notice that maybe there’s some other things that we could provide or help with, we try to talk about that and offer those things to the client. If it’s not something that we can provide directly, offer to find them services or resources.
Chris: And if you look at the graphic, we’ve defined healthcare extenders as professionals but you’ve seen that we’ve put family and friends. I know when we talked earlier, can you just talk a little bit about how critical the not just the immediate family caregiver would be but then also friends as being part of the extended team?
Kelly: Right, so MS can be a very isolating disease and that’s one of the things that we talk about here at the Society is that we want to keep connections alive, we want to keep people that have MS connected. So it is important that people with MS have a strong, let’s say, foundation, whether it be family and/or friends. So when we see a client that doesn’t have that support, we try to find a way that somehow we can find support for them. In saying that, I would say that it’s also important to provide support to these family members and friends and caregivers of the person with MS. Then it’s something that we try to help with here through counseling and respite care and that sort of thing. But we try to take care not just of the client but try to see the whole picture and the people that are supporting that client as well and try to find people that can be supportive of that client if they don’t already have the family to do that.
Chris: Awesome, awesome. Just for the audience, a few other points that we were able to glean from out literature review, one was that when you see the term “counseling” or “family therapy”, that there’s a myth perception that this would be an extender or a service that would only be appropriate for someone that would have a primary diagnosis of a mental health condition. Depression can be actually part of MS so we really want to break down that thought and that barrier that counselors, family therapists, marriage counselors can be really impactful.
Everyone hears that yoga and tai chi and Pilates and massage therapy and some of the alternative approaches are beneficial from a wellness standpoint but specifically for MS they’ve been proven to improve flexibility, mood, balance and stress reduction. So we wanted to make sure that we call those two things in particular, just because they’re really critical and do have direct impact on some of the invisible symptoms that we described.
So let’s shift from our literature review layer to our next layer, which was our findings from social media. Again, the benefit of social media is that when you’re doing research, basically the people that you’re doing research with are responding to your question. So what you’re learning is really limited to the questions that you’re asking. When I go on a discussion board, this is really driven by the people themselves. It’s raw, it’s unfiltered and, again, we went through 500 different verbatims and what we tried to do was focus on the subjects of the postings.
We definitely read through them but if you think about it, when you write a subject of an e-mail or if you’re on a message board and write a subject, for a couple seconds you stop and you think, “Okay, what is this about? What am I trying to say and how can I say it in the fewest words?” So we felt that that was really impactful. We captured three of those sample verbatims that really, to me, represented the common themes that rose to the top of the 500 different discussion boards that we went across.
The first is depression and MS. As we read through this, I would say it was the most common posting or most common topic that we saw. Most of the sentiments were questions around, number one, “Is this normal? Are other people dealing with this?” then also what to do, what people can do to help to improve their mood.
The second very common theme was this concept of newbie with questions. Generally, people who were just diagnosed, in many cases given a lot of information, any time you hear about a new diagnosis like MS, there’s a shock that takes place. People, in some cases, stop listening. You’re given a lot of information. So it’s very common for people to get back home, feel overwhelmed and turn to discussion boards to learn from people that have more experience. That’s, again, where support groups can be really helpful.
The third theme was just this common question of, “Am I just crazy?” Generally when we read through these postings, it was people that were concerned about mood changes, memory challenges, cognitive challenges and difficulty concentrating and, again, looking for other people that were going through that and had solutions and suggestions for them.
Some of the everyday challenges, it was really great to read through things that I would never think of, for example, taking meds through airport security. People, in some cases, were using autoinjectors and it’s just something that you wouldn’t think about, probably something that’s not going to come up during an office visit, but that’s something that was really important to this individual and a really significant long thread resulted from other people that brought up other practical concerns just to get through the day.
The next one was scared of romance, which really captures just the impact of MS on relationships. In some cases, it was someone had just met someone, had just started to date and were wondering do I tell. In this case, the person was saying, “I just met a girl. Should I tell her?” When you’ve told people what happens, just a lot of ambivalence around, and not only telling people in relationships but even telling family members, children, grandchildren. But this in particular was just around the impact of MS on relationship and how to talk about it.
Finally, anxiety around that scared really captured when people are first dealing with symptoms, they haven’t been diagnosed. In this case, the person had a history of MS. When you have a history in your family, it’s top of mind to have a symptom that they had not had before and they were reaching out to see if anybody else had had this and could give them any advice.
Kelly, I know we went through a lot of territory here. As I read through any of these, do any of these sort of jump off the page as more common than others in your role?
Kelly: I think that definitely just the anxiety. I think anxiety is the really big one. It’s, like you said, it’s an unpredictable disease so for someone who’s newly diagnosed, of course there’s a lot of anxiety about what is this, what’s going to happen to me. But because it is such an unpredictable disease, that anxiety is always present for a lot of people because, as we said, it affects your central nervous system. So basically anything in your body that has a nerve, then it can be affected pretty much at any time. So that anxiety seems to be present for a lot of people that I speak with that have MS because you just kind of don’t know what the next day might bring.
Chris: Right, a lot of unpredictability and uncertainty.
Chris: Okay, our next [inaudible], as we mentioned, was going to the National MS Society, coming to Kelly, bringing our findings from social media, our topic, our findings from lit review and we thought it would be neat, we were really excited when we heard Kelly’s reaction so, Kelly, do you mind sharing just your reaction when you saw the e-mail from, I think, Kelly Howard had sent an e-mail to you that shared the PowerPoint presentation and the topic, just what your response was?
Kelly: It was very exciting and I’m pleased to be a part of this just because, as I said before, as an MS Navigator, I am the person who’s speaking to clients on a daily basis and the more that you speak with clients and the more conversations you have with each client, you start to learn more about the silent symptoms that they’re experiencing. As we’ve just said, anxiety and uncertainty is a big one so as you see on this slide, these are natural thoughts of some of our clients. It just kind of shows the insecurity and the anxiety that can be caused when you just are not sure what’s going to happen the next day.
Getting calls from people that are working, that are starting to feel more and more fatigued and maybe having cognitive issues and you’re trying to work with clients to maybe figure out ways that they can get accommodations at work but still stay connected through work and continue working, those sorts of things. So I found this topic to be very interesting and very pertinent.
Chris: Awesome. Yeah, I guess MS means creatively and just the concise nature that the [inaudible] capture is just tremendous. Really, really nice job.
So the final layer is our webinar today and this is something we’re really excited about and that is we would like to learn from you now. We’ve walked you through our lit review findings, our social media. We talked about our theme of invisible symptoms. Part of adult learning is that it’s a two-way process. We’ve identified an activity that we’ve done in the past. Webinars tend to be a one-way education where you’re basically listening to a presenter and then at the end of the webinar you ask questions. Some of them we get to and some of them we don’t.
We wanted to break out of that box through a process called “brain writing”. Brain writing is just a fun, engaging way to brainstorm. The spirit of brain writing is that you want to try to share as many ideas as possible within a short time frame. These ideas could be tips, they could be resources. It could be experiences that you’ve had. Again, we want to try to make sure that you’re not agonizing. We want to make sure that you just type and give us your responses and your comments.
The general process that we’re going to go through, we’re going to share some of the tools in our toolkit. After each tool that we share, we’re going to give you a few questions as thought starters. We’re going to give you 45 seconds for each question and we want you to go into your solutions via the webinar questions flash chat function and we’ve given you a graphic here to show you where that would be. If you’re not seeing it, you can click on there’s a red arrow that would pull the margin out and you can click in the question/chat function area there.
Again, don’t overthink or agonize. There are no right or wrong answers. The outcomes to this whole exercise are, again, that we learn from each other. But we’re also really excited that after the webinar, we’re going to develop a publication that will take all of the slides that we’ve presented but we’ll also add the comments and tips and resources that you’ve shared with us and we’ll share that back out to everybody who’s been on the webinar.
We do want to mention that since we’ll be sharing your comments, please just avoid sharing any information that you would not want others to see. But, again, we’re really focused on solutions.
Derek: Great. At this point, I just want to recap. This is a very different part of the webinar and what we’re excited about. So at this point in the webinar, we’ve presented the SolutionsMining methodology that has identified the topics of invisible symptoms. What Kelly Walker and Chris Kelly have done is bring tools that can help those with MS, healthcare providers, families living or managing invisible symptoms of someone they love and we’ve precipitated and dug through many, many tools and the MS website to bring the most relevant tools to address the invisible symptoms to the top. Chris will present those tools and as he presents them, we’ll ask for your comments on these specific tools but, as Chris mentioned, we want to hear what tools maybe you’ve used in addition to these tools and any other comments that Chris might ask so we can all learn from each other.
Chris: Awesome. Thank, Derek. So this next slide really shows what we’re calling our solutions webinar toolkit. It’s a series of videos which we’ll walk through. We have an assessment tool, clinical practice guidelines and then some tools related to connecting with peers. So we just wanted you to be able to see all of the tools in one place. But now let’s walk through each of the tools individually.
We’re going to start with the National MS Society has a great library of videos. There were four videos given the topic that really jumped out at me. They are “Mood Changes and MS” series. There’s one video that captures understanding depression, one that captures managing anxiety. The great thing about these videos is that we’re actually modeling through the courage of other clients and caregivers, what it looks and sounds like to talk about these issues. I give them a lot of credit. We’ve talked about how difficult it is to bring these things up and these people have not only chosen to talk about them but on a national stage, in a video on a national website.
The other benefit of these two videos is you have an opportunity to hear healthcare providers also talk about the fact that assess for these symptoms and talk very positively about how they could be overcome with treatment. Towards the bottom of the slide, we have a video called “Career Crossroads” that the National MS Society has developed, which not only, again, has clients talking about how MS has impacted their lives and their jobs, but also includes some scenarios where a client had to think through, given the symptoms that they have, how are they going to bring this up with their employer and you get to really see how that played out with their employer, which I think is really powerful.
In the fourth video, “MS in a Personal Relationship”, really, you can see the image here. This is a husband and wife who talk very openly about the way the diagnosis of MS and just as the symptoms progressed can impact the personal relationship and some tips that have worked for them. So four incredibly powerful videos that model everything that we’re discussing and, to Derek’s point, these are in the library. We wanted to make sure that we pulled them out so you didn’t have to search for them and serve them up as part of this toolkit.
All right, so what we’d like to do now is have our first brainwriting exercise and just to recap, we want to make sure that you go into the question/chat box. We’re going to give you 45 seconds. You can see here we’ve listed a few questions and I’ll go through these very quickly. As you heard about the topics covered in these videos, depression, anxiety, impact on work, impact on relationship, what was the first thing that came to your mind? If you’re a professional, how would you use these videos? If you’re a client or a caregiver, what kind of impact would these videos have on your life? Then to Derek’s point, other than these videos, share any other tips, tools or resources that have helped you to manage barriers. It could be books, articles, anything that would help others that are dealing with some of these challenges and we’ll give you 45 seconds starting now.
Okay. Hopefully everybody was able to give us your solutions. The next tool that we’re going to go through is our MS quality of life inventory. This is a validated assessment tool that was developed by the consortium of MS Centers, health services, research subcommittee and actually funded by the National MS Society. It’s a tremendous tool that healthcare providers can use to assess for and discuss invisible symptoms.
We want to actually dive into this webpage so that you can see the great way that the MS Society has taken some of these tools and organized them. You can see there’s a collection of tools around health status, fatigue, impact on visual impairment, mental health inventory, social support surveys. Then as we scroll down, you can see the administration time is given, the administration method, the scoring, comments, just a great, great repository of information for particularly healthcare providers who are looking for assessment tools.
Okay, our next brainwriting session is to think through, for the healthcare providers we just went through the MS QL assessment, what first thing comes to your mind if you haven’t used this tool, how would it help you. If you have used it, how has it helped you? If you’re a client or a caregiver, just speak to the idea of an assessment tool that can help a healthcare provider to sit down, give you a survey and have you identify and talk about some of the invisible symptoms. So, again, we’ll stop and we’ll take 45 seconds and you can enter your brainwriting comments starting now.
Derek: Great, and just to recap on the technology, there is a red or orange GoToMeeting arrow that’s pointing to the right on your panel and if you press that button, the GoToMeeting panel will expand and you can use the chat/message feature to answer any of the questions that Chris has asked. We’ll take about another 30 seconds. Thank you.
Chris: Okay. The next tool we’re going to go through is the clinical practice guidelines and, again, the National MS Society has done a great job of capturing a number of different practice guidelines. We’re going to dive down into the webpage and, again, all these links will be shared and you’ll have an opportunity to see all the different clinical practice guidelines. The first, the American Academy of Neurology guidelines are more or less overall guidelines for treating MS but you can see important topics such as managing injection anxiety, which can be common. There are health insurance appeal letters and toolkits for clinicians, the McDonald criteria for diagnosing MS and just tremendous resources for clinicians in terms of a guidebook, SSA letters and then the Private Disability Claims Guide for Clinicians. Then towards the bottom, really important, a tool around managing cognitive function.
So we’ll give you 45 seconds to think through when you think about clinical practice guidelines, if you’re on the professional side, how they’ve helped you, any other resources that you would share and then, on the client and caregiver side, your thoughts around the fact that there are proven valid guidelines that are out there to guide treatment.
Okay. The last tool we’re going to share is called “MS Connections”. Again, I know I keep touting the National MS Society but they’ve done a tremendous job of organizing a lot of this information. This is really a portal designed for peer connection, helping clients and caregivers to connect with each other and what I love is very clearly with links you see all the different options that if someone would more prefer an in-person discussion, there’s in-person connection. If someone didn’t have online access, they could be doing a connection through a phone discussion. They have chat rooms, message boards and then also an actual formal portal called “Online Peer Connections”, so there’s just a lot of diversity and a lot of options.
So we’re going to brainwrite our last time, think through again if you’re a client or a caregiver, just the benefit of online and in-person support groups. If you’ve done that, how it’s helped you. If you haven’t done it, how it might help you. Then any other support groups, tools, resources that have helped you to connect as clients and caregivers.
Okay. We hope that was an engaging process. We’re really excited to, after the webinar, to go in and see the comments that you’ve shared. Again, the spirit of this was to break out of the one-way dialog and learn from all of our audience members. We did want to share two key takeaways before we get to our close. The first is the quality of life for MS clients is directly related to psychosocial issues or invisible symptoms that are rarely addressed or discussed with prescribers and then healthcare extenders and tools can play a key role in helping to uncover and manage the invisible symptoms.
We definitely wanted to make sure that we provided an opportunity for questions so if we go to the next slide we have a graphic here that will show you how to go, you click on the red arrow, expand if you need to if it isn’t already out there, then you can just go in and type any questions that you have. We’ll go through them and with the time we have left, we’ll call out a few and try to answer them to the best of our ability.
Derek: Thanks, so at this time, we will begin compiling questions. We’ll take a minute to compile those and then we will begin answering. So any question is relevant. If you are a healthcare provider, any questions on resources that are available at the MS Society. If you are a client who is living with MS or a family, if you have questions about the tools that have been presented, any questions that we could be helpful with, we have, again, Kelly Walker here who is an MS Navigator and Chris Kelly as well to help answer these questions. So we’ll take a minute to compile those questions and keep them coming in. Thank you.
Okay, so we’re compiling questions. Keep the questions coming in. We just wanted to highlight a quote from Barbara. Barbara comments, and we’re excited about this, Barbara comments, “Make the decision to control MS and not let it control you.” Thanks, Barbara. We totally agree and that’s why we’re here today as well. So keep the questions coming in and we will compile and begin answering them in just a moment.
Okay, so we have a question from Lorraine. Lorraine asks, “What can you do for excessive fatigue?”
Chris: Great question, Lorraine. I think the first point is anytime you have any change, so if you haven’t been dealing with fatigue and this is a new symptom, you definitely want to go to see your healthcare provider first and foremost to just rule out that there are any other causes other than being an invisible symptom of MS. From the standpoint of things that can work for fatigue, there’s actually some great resources that will include in the followup publication that we’ll talk about, the fact that yoga, pilates and some of the, believe it or not, exercise programs can actually help to increase energy level. Again, you want to make sure any exercise program or routine that you’ve not tried before, you want to make sure you talk to your healthcare provider before you start anything new. But first just rule out any other causes and then things like healthy nutrition, staying active.
Also there are some cases where the fatigue may be due to a medication that you might be taking. That can be, in some cases, a common side effect. So without knowing your particular case, I would really recommend that you share this with your health care provider and let them guide you and there’s also a great video and fact sheet on the National MS Society website specifically related to fatigue, which we’ll make sure we include on the followup publication. Great question and I hope it improves.
Derek: Great, keep the questions coming in. We have another question. This is from Steve. “Does the MS Society recommend specific neurologists?” Kelly, would you like to take that one?
Kelly: So the MS Society doesn’t necessarily recommend specific neurologists. We do have some MS Centers and depending on where your’e calling from, the best resource would be to call the 1-800-FIGHT-MS number, which is our information and resource center and they can find out where you’re calling from and research neurologists and all sorts of doctors and services and resources within a certain mile radius from where you’re calling from and provide you a list of neurologists in your area.
Chris: The only other thing I would add, a little while ago we talked about social media, I know that the MS Society and there are other organizations that have chats and discussion boards and it’s actually a really common question for clients to go on those sites and the area that they’re in and ask if anybody had good experience with a specific neurologist. Also, most cities and states have what they call a top doc category where these are physicians that have been recognized for either their client surveys or by the group that they work in, whether it’s the American Academy of Neurology, so discussion boards and then also searching top docs. Again, we’ll do some research for you and make sure that any other information is included in the followup publication that we offer.
Derek: Okay, we have another question from Mike. “Does the National MS Society subsidize care services for people with MS and what are the high level requirements to pursue those?” Kelly?
Kelly: Okay, so, Mike, if I’m understanding your question correctly, we do have the ability to help out with the direct services, things like financial assistance, care management, physical therapy, occupational therapy. And, once again, if you call the 1-800-FIGHT-MS number, that’s our information and resource center, which is staffed by licensed social workers, when you call them and they can find out what your needs are specifically and then mail you not only educational materials but our financial assistance application and any sort of supporting documentation for the actual service that you’re looking for. Once again, if it’s not something that the MS Society provides directly, we do try to find other resources for you out there.
Derek: Great. Thanks, Kelly. We’ll compile one or two more questions and hold one moment.
All right, great, we’ll take one more question. The question comes from it looks like Lorraine. “Are there any studies that show the varying effects of MS on an individual and why others might live more active years with the disease?”
Kelly: So I’m not sure if there’s specific studies. I would imagine that there are some that have been done or taken place. One thing I can say is, in my experience with talking to hundreds of clients, is that MS is a very individual disease and it affects every person differently. So even though there may be some common symptoms such as numbness and tingling that a large portion of people with MS experience, it is a very individual disease and one person’s experience with MS is completely different than the next person.
Derek: Great. Thanks, Kelly. I have one more question here right before we close the webinar. Someone asked, “When I call 800-FIGHT-MS, what are the qualifications and background of the individual to answer those calls?”
Kelly: Those people answering the phones are licensed social workers. They have masters degree in social work and I believe there’s approximately 40 of those people answering the phones. Some of them have specific training in specific areas such as employment and MS and health insurance and applying for disability. So they’re all social workers and some of them have very special, exact expertise.
Derek: Great. Thanks, Kelly. All right, great, that concludes the questions. Again, we’ll compile all the questions and comments from the brainwriting that will come out to everyone that signed up for the webinar. At this time, I would like to turn it back over to Kelly Walker to discuss services that are available through the National MS Society.
Kelly: Sure. One side of the screen there are some just very basic facts about multiple sclerosis and the other side is our “How We Can Help” flier, which is just an overview of some of the services that we can provide, anything from financial services to education, employment services, health insurance appeals. There’s a whole plethora of things and as I said repeatedly, if you call the 1-800-FIGHT-MS number, that is your first resource to get information on all of those services.
Derek: Fantastic. Thanks, Kelly.
Kelly: Thank you.
Derek: Great, and in closing here, Griswold Home Care would like to thank everyone, including the Greater Delaware Chapter of the MS Society, all the families that have attended, all the healthcare providers and just as a recap, Griswold Home Care is a mission-driven, non-medical home care services company. We’re in our 31st year of operation and we were founded here in Philadelphia after our founder, Jean Griswold, was diagnosed with MS. With that, we’d like to conclude the webinar and we’d like to thank our presenters Kelly Walker and Chris Kelly. Thanks, everyone, and have a great day.
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