00:00 Hello everyone and welcome to the Transverse Myelitis Association’s Ask the expert podcast series. This podcast is entitled managing your health. After a rare neuro immune diagnosis. My name is Sam Hughes from the CONQUER program at the University of Texas Southwestern Medical Center in Dallas Texas. And I will be moderating the podcast today. SRNA is a nonprofit organization focused on the support education and research of rare neuro immune disorders. You can learn more about us on our website at wearesrna.org. This podcast is being recorded and will be made available on SRNA website for download via iTunes. During the call if you have any additional questions you can send a message through the chat option available with GoToWebinar. For today’s podcast. We are pleased to be joined by Paula Hardeman and Katherine Treadaway. Paula Hardeman is a physician assistant and the lead advance practice provider in the neuro immunology program at UT Southwestern Medical Center.

00:58 After completing PA school she worked in a primary care office where she was able to implement many programs to help patients learn about and better manage their chronic diseases that has diabetes high blood pressure and asthma. In 2010 Paula joined the neuro immunology team at UT Southwestern. Not only is she involved in the evaluation and treatment of patients with demyelinating disorders. She also develops and coordinates various research projects and health and wellness programs Katherine Treadway received her bachelor’s degree in sociology and master of social work at Louisiana State University Katherine has been at the neuro immunology program at UC Southwestern Medical Center since 2002. She works with a dynamic multidisciplinary team and both the adult and pediatric clinics participating and research and patient care She assist patients by serving as their advocate locating resources providing counseling support and information and arranging home and outpatient care.

01:57 Welcome and thank you both for joining us today. We got a number of questions coming in on this topic and a number of them kind of fit into some categories so I’m going to kind of lump them together and we can kind of go point by point. So first there were a number of questions that came in that kind of had to do with managing physical therapy after one of these disorders. So the first question we’ll start off with is I’ve been exercising and doing physical therapy since my diagnosis two years ago. I never gained a fair amount of strength if I cut back on my exercise program is my muscle strength likely to decline to where it was. So basically, what can we expect in terms of long term physical therapy needs.

02:48 After one of these diagnoses That’s an excellent question.

02:53 And so I’ll kind of start off with saying if you’re a person who was in high school and you were an athlete and you were accustomed to running three and five miles a day and is graduating in life/work situations have occurred and you’re not running as much when you try to go out and run that three to five miles. I bet it’s pretty difficult. So the same happens with post transverse myelitis or any of the rare conditions if you’ve been working with physical therapy or doing certain trainings to help rehab get you stronger and then what becomes necessary is to be able to maintain your function you will need to do some form of exercises whether it be stretching or different yoga or actually strength training to help be able to maintain function. The difficult part or the tricky part is that this is going to be different for each patient. Some patients will be able to find a regiment where they may only need to do exercises three to four times a week. Some patients may realize that they need to do something daily.

04:01 So it depends on where some of your deficits are and the function that you’re trying to maintain that on that exercise is really key for maintaining your emotional health as well as exercise. It has been shown to help cognitive function to help reduce fatigue reduce depression anxiety. So for your physical strength as well. Just an overall sense of well-being I think exercise is really important. And I know for some of our patients we’ve had to write letters to advocate for more physical therapy for them because there can be improvements. Many years after the event even so your physician may need to get involved in helping him advocate for you with the insurance company.

04:55 I’m glad you brought that up Katherine there there’s actually a question that came in relatively late yesterday that had to do with or at least part of it was talking about anxiety that they’re experiencing along with their tiredness and fatigue and everything I think if that’s normal and what they can do about that. So I’m glad you touched on that. Is there anything you’d like to expand on that in terms of kind of anxiety and depression in the context of ongoing concerns.

05:27 Post-transverse myelitis or any of these disorders.

05:29 Sure. I mean I think that those are normal feelings.

05:33 And just understanding that emotional changes can happen at any time during your journey and may not be directly after the event of what’s happened. And it could happen at some other time and with a chronic illness. And I would encourage people to educate themselves and be open with others about their feelings and fears because the more you know the less fearful it is. And that way you can base your reactions on facts rather than your worst fears. And there’s a lot of things I suggest as far as decreasing anxiety and there’s a lot of strategies you can use including Guided Imagery meditation and mindfulness deep breathing exercises massage even using essential oils can be relaxing. And I just encourage people to really explore what works for them. There’s this really cool app it’s called calm. C A L M (note1 ) and they have a bunch of meditation exercises mindfulness.

06:39 They even have sleep stories to help you go to sleep. They even have one for children. And in a lot of stuff on their app is free but you can just explore. There’s so much imagery and things out there that you can use. And of course, again exercise and yoga can be using a lot of your mind and body strength. So that can be really relaxing. And just say practice because practice makes habit and then habits just become part of your regular routine. And some people may want to reach out to for prayer or to a spiritual leader that might help bring some calmness to all of those things I think just focusing on the lifestyle changes that you can control. And I think when people are hit with a chronic illness or have one of these have transverse myelitis or NMO one of the first things to go for the family is enjoyable activities you know recreation goes to the side and encourage people to not let that go to the side because doing those activities does reduce stress that refreshes your spirits contributes to your overall health.

07:52 And those things might be just hanging out with friends having a date night with your partner and family night. Some people escape with music or art. And I just encourage people to find that place where the transverse myelitis doesn’t touch ADEM doesn’t touch you know find your illness free zone where it’s just you and your loved ones in there.

08:18 And of course there are different medications that patients can talk to their health care provider about taking to help with some of the depression and anxiety that can come along with these various diagnosis’s. Katherine is completely right. You don’t necessarily have to have the anxiety or depression that occur immediately after the of this that can occur later on. And so I always encourage my patients to think about prior to the diagnosis. If you were worried about something or if you were stressed at work what type of symptoms did you have and most will voice that they had muscle spasms or they had headache or they could tell they felt stiff. So now moving forward you have this rare neurological event that can also cause muscle stiffness muscle spasms maybe even cause you to have a headache and not feel good. Combine that with the natural stressors the body goes through when we are stressed and that can help you to realize that when you get stressed or when you get depressed or when you get anxious that could further exacerbate your TM NMO or ADEM symptoms.

09:25 And so it’s very important to work on different coping mechanisms whether it’s some of the different strategies that Katherine discussed or sometimes some patients may need certain medications to help them as well. So please talk to your healthcare provider about that to see if there’s any options is going down the medication route.

09:46 Yes. Thanks.

09:48 That brings up a good thing that Paula was just saying talk with your medical team. I mean talk about sensitive subjects that might be depression or cognitive changes or sexual dysfunction. Please talk to us. And if you do feel like your problems and worries are getting the best of you seek out some help from a therapist. I think some people think of this as a sign of weakness. But I think of it as a sign of strength because you are empowering yourself to be the best that you can.

10:21 I think that is important to remember and like you both just put together that connection between you know cognitive and emotional symptoms and physical symptoms are really very related. And being able to work with your care team to identify solutions to help one or the other can potentially affect the other. I was wondering Paula you might be able to help out with this question of course talking about fatigue anxiety and all of these kinds of things. You know these diagnoses and the events that lead to these diagnoses can be very stressful and adds to these normal stress. But how much of this of these disorders can lead to more of an organic reason for these conditions. For example, there’s a specific question that came in talking about fatigue. Their just diagnosis with TM has suffered with fatigue and they just had some blood tests done.

11:26 And when so that their cortisol level was very high. Would this be a symptom of TM and how do I go about managing my fatigue. So when I see that I think of high cortisol levels and think of a lot of different issues that could come from that. Could you maybe speak to what that would mean for one. And if that could be a part of the disease process.

11:49 Sure. So it’s a little complex and we’re going to start off with kind of just a basic in that in this particular example. So the simple answer is No. So having TM did not affect that patients cortisol levels. But what could be affected if the patient was treated with steroids at any time. So different medications that may be used to help control the TM or work on some of the symptomatic management could cause certain blood tests to be abnormal and then creating a new symptom. So this is one of the things you have to really talk about with your healthcare provider when you’re discussing various medications to go on. What are the potential side effects and how is that going to affect how you do your day to day functioning. How is that going to affect your other internal organs so you have to remember you know medicines can infect your liver can affect your kidneys can affect your hormone levels which can all lead to you may be feeling fatigued or might make you feel like you’re having palpitations or can it make you feel like you’re nauseated.

12:55 So it’s important to have a clear understanding of different medications and how they impact the body. But I also think this question brings up a good point of what I always want my patients to realize is that your TM NMO or your ADEM is not always going to be the cause of your current symptoms you’re having. So for instance with fatigue there are a lot of other causes whether it’s adrenal causes whether it’s entire chronology causes meaning your thyroid or whether it’s diabetes. But there’s a whole host of other different disease states that can cause fatigue.

13:33 So sometimes your symptoms may not be truly related to your transverse myelitis or your NMO or your ADEM and this is why it’s very important to talk to your healthcare provider and have a good internist who’s going to communicate with your neurologist so they can help decipher if it’s something more neurologic related or is there something else going on with the internal organs that we all have yeah I think that’s important to note.

14:03 And there’s another question that came up asking about stiffness and pain and moving and long-term care for that. So basically, they have TM when they were 35 and they’re now 58 and within the last three years stiffness and pain have increased.

14:24 And so I’m wondering if maybe you can speak to you know when you have an event and your years out from it and you’re aging how the interplay of dealing with symptoms post TM or NMO or one of these diagnoses especially if it’s a one-time event. How to manage that with the natural aging process and how do you how do you flesh that out as a provider.

14:53 It’s very tricky to flesh out because as we all age things are going to not work as well in which tricky with some of these are disorders they’re a progressive disorder so you expect to see a little bit of progression of symptoms. Unfortunately, with these disorders being rare it’s hard for us as providers to have true evidence to be able to predict what the progression could look like in these different patient populations. So with that said I think with the podcast participants are going to realize there’s an underlying theme of discussing these different things with your health care provider and they will be able to give you some insight on that or just certain natural aging to occur.

15:38 For instance I hear with my patients frequently that they’re starting to have knee pain. Probably if there are some gait mechanics from the TM or NMO or ADEM that can affect your cartilage and other support ligaments in the knee and cause you to have knee pain. But it may be also some aging factors in there to arthritis. So we’re all going to get a little bit of arthritis as we age which could be causing more of the pain and not necessarily the neurologic condition that the patient may have. But there are some different tests that can be done especially if we’re looking for bone degenerative changes to simple x rays will be able to give insight. Is it more of a muscle skeletal? So those are just the bones having their normal wear and tear or is probably some impact of the neurologic condition causing a little bit more of the aches and pains that we can experience as we age.

16:36 Sounds like that touches on the physical therapy aspect of things if there is a problem with the gait mechanics because of the nervous system injury that that’s not being managed. Well from a physical therapy standpoint then it can lead to worse problems down the line. Is that a good summary?

16:56 Now that is a very good summary. And so it is very important even if you feel your data is normal after a bit I think it’s very important to go work with the physical therapists who are trained in various gait disorders because you could be doing a little bit of bad stuff while you’re walking to accommodate that you don’t even realize for weakness that you have. And fast forward of doing that five 10 years down the road and you’re starting to put unnatural wear and tear on your bones which is going to further lead to other problems that you can have the low back hurting or your hips start to hurt. And so the physical therapy is a good way to help prevent some of these other wear and tear activities that can occur.

17:43 I would like to add to that that I would seek out a physical therapist who has neurology experience a lot of physical therapists are trained more on the orthopedic side. So we’re very lucky here. We have many neurology trained physical therapists that I would look for that. And just like Paula is saying one of our physical therapists used to tell me we send people to me as early as possible even when there are no issues. So they just like Paula is saying be sure that you’re not compromising and wearing and hearing some other part of your body that you’re not aware of.

18:24 Yeah. It’s such as on the concept of preventive medicine. Right.

18:29 Which is something that we as individuals when we’re when we’re sick or when we are dealing with something we don’t necessarily think about the long-term effects of something that’s going on right now. We’re concerned with that right now but if we can especially with these long term or chronic illnesses we need to remember that it’s important to focus some time on preventive care in order to minimize whatever longer term issues might come up just because of you know the addition of natural aging or all of this. I think that’s a very important point that you can make.

19:03 Well and another thing Paula and I were talking about the other day is to how important it is to build your medical team have a primary care physician. That’s kind of coordinating and helping you with all your care. How your specialist as well. If you can be in a university setting you know we’re able to look at each other’s information on the computer. It may not be as easy in other places but I think building up that team is going to just make you so much stronger because it’s a lot easier to be enthusiastic as a team than being alone.

19:40 Yeah that’s so true. And it’s so needed because there’s so many different specialties in it. It does take a team to manage patients with chronic conditions and so I look at the patient as being the quarterback of the team and they need to develop their other members. With it being a primary care a neurologist maybe a physical therapist or occupational therapist depending on what deficits they may have. And sometimes your other team members might need to include a neuro psychologist if there’s certain cognitive issues occurring. A social worker or a psychologist if there’s problems with anxiety or depression and all these members of your team should come together and discuss potential ways to help keep the patient functioning or are maintaining their current level of functioning.

19:40 And we, go on Katherine

20:42 I was just going to say are out there just in maintaining function for people who are out there working part of their team they may want to investigate who are state vocational rehab program (note2 ) is like here in Texas of ours just moved under the Texas Workforce Commission at the Texas Workforce Solutions. But every state should have their own vocational rehab program where somebody can call in work with a vocational rehab counselor and open a case if you’re having difficulties at work. They’re there to help people who have impairments or disability to keep working and they can educate people about the ADA laws. What kind of accommodations can be asked for. And there is a really great Web site and resource for patients who are working and call the job accommodation network (note3 ). It’s through the Department of Labor and they give all these examples of accommodations to work with your employer and even how physicians write letters of accommodation or the patient could call in and just find out you know this is what’s going on at my work.

21:54 What do you suggest. And they have legal professionals there at that organization and I would encourage people if they have been at their employer for a certain over a year see if they’re eligible for family medical leave just to have that protection in place for intermittent intermittently when they need to go to their appointments when they go get imaging done or labs and things that come up and just have that are having a really bad day to have that protection through your through the government. Basically

22:29 it’s a federal law so not FMLA Family Medical Leave Act (note4 ) it’s important to know your resources that at the end of the day we can we as providers can do what we can but the patient the person in the middle of it is really the biggest advocate for themselves and finding out those other advocates for them are going to be important in knowing what their resources are. Paula and Katherine, you both spoke to kind of finding that team of providers to help manage care and find resources in all of this. There were a couple of questions that came up that spoke to that about the difficulties in doing that. Specifically, there was a question someone asking about their adult child with a 10-year history of ADEM or ADEM from 10 years ago saying how difficult it is to manage the neurologists and the urologist and the other the other providers that are necessary.

23:33 And I know you speak to the importance of the team dynamic and you might not be able to really answer this question but I think many people would say that that’s easier said than done. So I’m wondering especially with these rare disorders when them there might not be a specialist in these disorders in their vicinity or even in their state. How do you have any tips or tricks or things to think about when it comes to putting a team together or managing interstate providers or things of that nature. How to how to best find the primary care provider to help facilitate the other kinds of care. Do you have any thoughts on that.

24:18 My one biggest thought I would say and I completely understand that if the team is not already somewhat put into place that looking from a patient perspective this could be a huge task to take on to develop your team. So I guess my one piece of advice when starting it as you’re seeking out health care providers. I think the one key thing that they need to exhibit they don’t necessarily need to know and truly understand TM or NMO or ADEM but they need to be able to truly listen to us the patient and understand your concerns your fears and help navigate you to the right places. So it may be important just to have the first initial visit with any provider and ask key questions of are you going to partner with me and help me navigate through this course and advocate for me when I need a health care provider to advocate for.

25:11 And I hate to say it but if your overall sense is that they’re not willing to do that then that’s probably not the right provider for you and you need to look elsewhere. I know on SRNA Web site there are providers that are listed there (note5 ) that are more familiar with these rare disorders that can be a place to start and at least getting names of people who can be more resourceful for these patients. And then it’s also reaching out to other patient advocacy groups and various Facebook groups and just asking the questions of Who have you found and been able to work together in forming these care teams.

25:52 The other side that I’ll just throw out there is you know patients do have to advocate for themselves in one way that’s a very important way of advocating or highlighting the importance of having these care teams is to talk to your local and state representatives (note6 ) local and state government (note7 ) will listen better to the patient because you are their constituents versus if I reach out to them saying the need of helping the fund to put together such programs they will listen to you more and you reaching out to them is going to be more meaningful than me doing that. So I would really encourage patients to reach out to their state and even U.S. federal representative and tell them that we need to be able to have these care teams put in place for patients with rare disorders.

26:49 Yeah I think that’s all very important to remember it’s not just medical resources that we have but even some of these legal resources or governmental resources to help you know try to affect change a little bit and that can seem daunting or futile but I think it’s important that even a small a small seemingly small thing can lead to larger repercussions if you know a lot of little small things come together. Katherine do you have anything to add to that in terms of care coordination.

27:23 I realized that it can be really overwhelming navigating the healthcare system.

27:29 I would encourage people to get summaries of care from their physicians and try to bring that to the different providers to try to keep everybody on the same page you know bring a list of your medications you know go to those appointments bring a family or friend or family member or a friend to your appointments so that they can hear everything too because sometimes your thinking is trying to absorb things. But somebody could be there to take notes for you just to help you remember you know everything that was discussed Yeah.

28:09 I mean I’m in that boat because I do it for my daughter and she sees multiple providers but I just try to keep it all is organized as possible. And each of those people and are not all at the same facility either. So I think that’s just when the patient or parent really needs to just kind of step in and try to keep those get copies of your scans whenever you can. So you have those on hand when you’re going to appointments not trying to scramble to find them.

28:41 Yeah.

28:44 Go on Katherine. No go ahead. I was just going to say that all for good advice.

28:51 And I think I think I was well I just would say one more thing is that some of the most valuable resources I’ve learned about are from other parents who have a child with the rare illness that my child has. I would have never found out from it otherwise. You know I have found some amazing resources so I would just say to network with other parents other patients with the same illness. So you know they may know some wonderful resource that you don’t know about and vice versa.

29:29 Yes.

29:30 That’s I think very important and one of the purposes of SRNA here is to really create that network not only have like a hub to see what resources are available what providers are there educational materials that you can give to your provider as a patient but also these networks the Facebook groups the support groups that are created under the auspices of SRNA for these connections to be made. I can speaking to the Dallas Fort Worth TM and NMO support group here. A lot of their meetings are just consist of roundtable discussions of what’s worked for you what hasn’t worked for you. Where do you go. How did you manage this. I know from speaking to them and being they’re very valuable to them so I think it’s important to again like we’ve said here it’s not just looking at your doctor or your provider to answer all your questions. It’s helping finding the information from all the areas that could exist and then and then trying to condense that down with the help of your providers.

30:40 It’s the same plan to throw in the resource for parents and we. I’m so lucky here because we have school services at Children’s that helps us out with educating the schools that we have handouts for ADEM and limbic encephalitis NMO and TM. I came across this website. It’s called understood dot org and it goes over all about five or four plans about individual educational plans. I mean a lot of things that you don’t know about unless you have a child that needs these plans. It has common accommodations or all kinds of articles on this Web site and I think it would be really valuable for someone especially maybe just starting and doesn’t have somebody from school services to try to navigate that for them.

31:35 That’s important to remember especially the added layer if you’re a parent or guardian of a child with one of these disorders or if you yourself are a college student and trying to figure out what accommodations you can have while you’re in school. That’s a that’s a whole other layer and a whole other area of resources that are available. Moving on a little bit. There are a number of questions that came in regarding kind of how to handle pain and fatigue. They tend they’ve tended to go hand-in-hand in these questions. In the long term after these diagnoses specifically the questions came in about TM And so the questions are really along the lines of you know do the physical therapy do all the exercise do the swimming do the rehab I’ve done all of this. I am in great shape but there’s still been years of constant pain.

32:40 And that is obviously a concern and a hard thing to handle. And of course it can drive that pain can drive a lot of other issues. Did you speak to a little bit how what to expect in terms of pain after these diagnoses and then what are the options as to how to manage pain after TM or NMO or any kind of these demyelinating attack.

33:08 Sure glad to hear the one of the patients with the end of the question that they’re doing all the exercise components that can help with pain and so some people seem like that a backward thought process. We’re going to do exercise that can help with pain. But wouldn’t that make it worse. And actually that that’s not true. And so if you’re able to do any type of physical activity whether it’s stretching or swimming or just even simply walking that can actually help improve pain and especially the fatigue component that can come with it also. And also just remember this is not saying that you have to go out and do a hard 60 minutes of swimming even if it’s just simply 20 minutes a day or you can break it up and have 10 minutes in the morning and 10 minutes in the afternoon getting out and having that physical activity will help immensely with managing the pain if you’re doing that and you’re still having some pain that’s interfering with your daily function.

34:11 Then there are different medications that can take and I’m not recommending or saying that there are narcotic medications. There are a lot of different type of medications that we can use of patients have neuropathic pain. So if you’re having pain that’s causing you to have a lot of numbness or tingling in your extremities there are different types of medication that can that we can use to help with that. A lot of the medications we use are old seizure medications or old anti-epileptic medications. But they work very well at controlling neuropathic pain. If you’re having a pain that is more associated with muscle spasm then you may want to talk to your provider to see if you can get in with someone to do Botox.

34:58 So Botox can help relax the muscles and it’s injection of course that you would go and get about every three months or so but that can help also with the reduction in pain. And then there’s other modalities that can help with pain depending on the type of pain you’re having. We will send a lot of our patients to our pain group who can do different types of injections to help with managing the pain as well. So it is tricky just to have one exact way to treat pain because there’s just different ways of getting the pain control depending on the type of pain the patient is experiencing.

35:43 And of course. Katherine. I was just going to add a couple of things that guided imagery has been shown to be really helpful in decreasing pain. Mean there’s been a lot of studies out there and there are specific imagery. I mean you can just Google it. There’s a health journeys that develop by Belleruth Naparstek (note8 ) She has so many different relaxation things like guided imagery for pain and I know the pain management program. They do a lot of biofeedback. And then this may lead into another question but I think that eating and having healthy eating skills is really important as far as pain control too. I listen to tons of podcasts myself. And on the drive home message I keep hearing over and over is that sugar can cause pain sugar can cause anxiety. Sugar can cause depression and that’s not just sugar but processed foods as well.

36:45 And just how important it is to eat real food and healthy fats like olive oil real butter coconut oil and incorporating lots of vegetables and protein into your diet. That that really can have an impact.

37:02 Yes that is that’s true. And I’m going to predict that now that Katherine has mentioned about diet that all of a sudden there’s questions now coming up on what diet is recommended for patients with rare neuroimmune disorders and the simple answer is there’s not one. So the way we practice medicine is we look to the evidence and look for evidence based medicine.

37:26 So unfortunately from the nutrition standpoint there hasn’t been any well controlled studies looking at. If you go on a dairy free or if you go on a gluten free diet how does that impact TM or NMO or ADEM. But I do agree with Katherine if you avoid the processed foods or you avoid foods high in sugar. My patients will report that overall, they feel better including their pain and will actually improve with going to more of the cliché. But the whole foods. So just your fresh fruits and vegetables your lean protein making it more of about balanced diet can help with some of the symptoms as well.

38:15 Yeah you all touched on some of the questions that came up about diet before we kind of elaborate more on that. I

38:24 gather you talked about the pain management standpoint I was thinking as you guys were talking about the pain management groups many people when they think about pain and how to take care of it think of the you know the pharmacologic methods and narcotics. The other the other ways some people may think about you know exercising and whatnot but a lot of people don’t think about the other forms of pain management groups move into which is more of the cognitive therapy aspects of it and going that route and using those resources. So I think that Katherine you might be able to speak to this either of you about you know having going to a special therapist cognitive behavioral therapist to help manage pain long term pain that might not be well controlled with diet exercise or medications. Could you speak to that for a moment?

39:19 Having your correct Sam there is. We have several referrals for psychologists who specialize in pain management. So I think is such an important piece of managing your pain is your emotional and mental well-being because we know our mind can be so powerful over our bodies. And they definitely can implement them like I was saying biofeedback and kind of behavioral therapy. All of those things have been shown to help decrease pain. And just having someone there to coach you and there’s lots of coaches out there now you know coaching with nutritional coaching personal training coaching. There’s all kinds of things out there.

40:06 But there is psychologists who specialize specifically in pain management and the use of psychologists in pain management is starting to become more mainstream. And you’re a what I’ll call your traditional pain management center so I agree with you Sam that some people may have these pauses when you say to go to pain management thinking that they’re just going to get a whole bunch of narcotics and have to come back every month to get them refilled. But a lot of pain management centers are actually developing this most disciplinary approach where they can have you meet with a pain psychologist to do some of the cognitive behavioral therapy training to help change your response to either stressful situations or even sometimes just your response to when you can tell that you’re starting to have pain. There is definitely some evidence out there to suggest that when you start having pain there’s a whole cascade that occurs mentally and that could further exacerbate your pain.

41:06 So the psychologist can work with you to retrain that thought process. In addition, they can have whether it’s the PT or are different modalities work with you to work on the functional aspect of the pain as well. You

41:22 know I heard some of our patients to say the physical therapist he has been amazing in that regards. And Paula already brought this up just again to remember that transverse myelitis or whatever other rare illness is not always the reason or it’s not always the issue. And this came across just personally in my life. My husband has horrible feet pain and he thought it was his diabetic neuropathy which it could be. But he also found out he had plantar fasciitis in both feet horribly. I guess he went to see a physical therapist for something else. So just know that just don’t assume you have to live with a symptom. Talk to your provider. And usually they’ll be able to get to the bottom of it and try to figure out what’s the best course of action.

42:13 It’s important to remember hit on that again that it’s again not always the chronic illness or other things that happen in life and working with your care team to figure that out is important with the conversation about diet. It sounds like from what you guys have said Paula that there’s not necessarily a recommended type of diet a fad diet in order to for these kinds of disorders or how to how to handle the disorders in general. But just that the general concept of healthy eating you know clean and trying to eat cleaner unprocessed foods low sugar good fats all of that you have. Are there any thoughts about supplementation. Like I think of vitamin D and multiple sclerosis or other kinds of supplements. There’s a question that came in about turmeric or any of these other supplements or to be vitamin or otherwise helpful with aspects of neurological disease. Do

43:20 you have any thoughts or insight into that.

43:25 Sure. And it’s you know I hate to start off with saying that there’s been no evidence to show you know improvement with things such as tumeric because I know there’s a lot of suggested information to say that it’s anti-inflammatory but there’s been no proven studies to show that it will change a person’s day to day symptoms with TM or ADEM or any of these other conditions. Whereas vitamin D is a little bit tricky. And so yes we do have a lot of data more of the MS patients that vitamin D has higher levels of vitamin D has been shown to decrease relapses. And so we are extrapolating that across to some of our NMO patients and patients with recurrent TM in some ADEM patients but it’s still I would say not 100 percent proven in these patient populations just because it hasn’t been truly studied.

44:28 And so this is the frustrating part where the science is probably behind the times of what patients are doing day to day. I tell my patients that they can you know take the tumeric but I try and set the realistic expectations. It’s not going to change your immune response to things. It’s not immune suppressant or anything of that nature. However, if it helps you to feel better if it helps you to feel your spasms are better. I don’t see any problems with that. But I do just want to be clear of setting expectations with patients that it’s these different foods and supplements aren’t going to do anything to change their immune response but they can definitely show some benefit into your day to day symptoms.

45:16 Yeah.

45:17 Yeah it sounds like the main thing with these takeaway is that we because of the rarity of these disorders and the lack of you know good clean scientific evidence as to diet or supplementation or things of that nature it can be a lot of trial and error and remembering that there’s not necessarily a cure all panacea for any for any particular type of thing. But if it’s something that you want to try an experiment with see if it works for you as an individual work with your provider to make sure there’s not any long-term harm or damage that could be caused by it.

45:58 That’s fair. And if you can work with your provider with this would that be a good summary Paula? that would be.

46:05 Excellent summary. Yes. Thank you Sam. Hey I’m. Go on Katherine I also thinking of one other thing that could increase or contribute to pain and that is lack of sleep.

46:20 And I think Paula is going to touch on that how important sleep is. Thank you for the reminder Katherine.

46:28 Now that is that is so true. So everybody probably need at least a good six to eight hours of sleep and so I give a range because I do think there are some people who can function normally on six hours of sleep and there are going to be people who need to have a little bit more and have about eight hours of sleep to function. If you’re having interrupted sleep either because you have the dog or cat in the bed with you or you have a partner that’s snoring or the kids sneak in at the middle of the night and they kicked you in the back which might cause you to have some pain too. But impaired sleep can definitely effect of course fatigue is a given and that can affect your cognitive functioning and it can make your pain seem as though it’s worse just because you did not get a good restful sleep.

47:20 So patients need to be mindful that the purpose one of the main purpose of sleep is to help repair and restore. So it’s important to get in all the good cycles of sleep so the body can repair and restore itself. And so if your sleep is interrupted for various reasons this can also be a while you might feel like your symptoms are progressing or why things may be getting worse. So I always remind patients that you know you have to make sure you’re practicing good sleep hygiene and the first step is the purpose of the bed. The bed is and everybody everybody’s going to blush when I say this. The purpose of the bed is for two things. Sleep and sex only. So you’re not supposed to read in bed.

48:02 You’re not supposed to have long discussions with your partner in bed. You’re not supposed to watch TV in bed. You’re going to get into bed when you’re planning to go to sleep or have sex. And so when you’re getting in the bed to go to sleep you should just allow yourself to lay there for a few minutes. And if you haven’t fallen asleep you need to get out of the bed and do nothing that’s going to stimulate the brain. But just something that’s going to continue to help you to relax until you feel sleepy and then crawl back into bed. And so there is there is some CBT or cognitive behavioral training that can be done with patients to help work on the sleep aspect especially if you have problems falling asleep. Other pointers have good sleep hygiene is to make sure your bedroom is peaceful so do whatever you need to do to make the bedroom feel like a serenity.

48:54 So if it’s putting up special curtains or if it’s having lavender scent in there or if it’s having it if there’s a color that helps to put you at peace then these are the things you need a corporation to the bedroom. You want to make sure when you’re getting ready to go to bed that the bedroom is as dark as possible. If you have some type of outdoor light that is shining into the bedroom. You can purchase a room darkening curtains to put out to help keep that light out. And the other thing is you know make sure that the pets and the kids and the husbands cooperate and not having the pets or the cats or dogs sleep in the bed with you if your partner is snoring send them to their own provider to get a valuated for that so they can stop snoring or snore less or might have to try using earplugs just depending.

49:49 The other key thing that patients will do is don’t look at the clock if you wake up in the middle of the night avoid it avoided avoid it because that will further exacerbate your insomnia. And so if you wake up in the middle of the night and just try to go back to sleep but don’t look at the clock. If you feel like you’re still not falling out of sleep then you should get out of the bed. Either you know a chair and read until you start to feel sleepy I actually tell patients to try not to even keep a clock in their bedroom because sometimes even the illumination of the clock can be enough to affect your normal sleep patterns.

50:30 And it also means that maybe sometimes it’s not a wise idea to have your cell phone near the bed either because that also will give off a light. And if you’re getting text messages throughout the night or different indications on your phone it’s going to light up which can also impair your sleep. So, there’s various Web sites out there that can go through and give more detailed instructions for good sleep hygiene. But this is important in the overall management with any chronic condition.

51:03 Yeah, I think that’s all important the proper sleep hygiene which there are tons of tips and tricks for that. All over the place any provider should be able to discuss proper sleep hygiene and good sleeping practices. For anybody in general it can affect like you said fatigue pain cognitive thinking and all of these things that can all exacerbate each other. Some questions that have come in as this conversation has been going on are about issues that arise from TM and these disorders like you know urinary issues through the night that wake you up or spasms wake up that wake people up in the middle of the night and it’s hard to get a good night’s sleep. I know that we only have about five minutes left but maybe you can speak very briefly to that kind of hard question about how and how to best or their tips to balance that issue.

52:07 Sure. So real quickly in regards to the bladder. You know the first and easiest thing is to go to the bathroom before you get in and get into bed and limit your liquid intakes about a couple of hours before bedtime. And so, if patients are already doing that then the other step is to talk to your healthcare provider about different types of medications. There are actually some medications that can help alleviate the getting up to going to the bathroom at night on the pain and spasm side. I find what works best with that is to actually do some simple stretches right before you go to bed to help the muscles relax and that seems to be able to alleviate the pain in the middle of the night. If patients are already doing that once again there are different medications that can be taken only at that time that can help decrease the number of spasms that may occur during the middle of the night that could further exacerbate or went up during the night.

53:09 Thank you for that.

53:10 Hopefully that can help some people who have these issues and I think you touched on things about you know bowel and bladder regimens bowel and bladder programs that can help balance these things and finding what best times to eat. Best times to drink. Best times to go to the bathroom prior to sleeping and trying to make things as routine as possible can help with all of these things. In the last five minutes that we have here I wanted to throw it out to you guys. Paula and Catherine to each give us kind of a summary and overall kind of minute or so take away from this conversation today that you’d like for people to have Katherine would you like to start?

54:00 I’m trying to just say that there’s many strategies for healthy living. And I think we talk about several but just to find what works for you and I think when people are faced with a devastating or chronic illness that it really gives them the opportunity to prioritize what is really important in their life and just kind of forget all the small stuff because you know I see people worry about small stuff in my life all the time. I think wow I wish that was all I had to worry about but just to really prioritize what’s important to you. Don’t be afraid to say no. You’re giving someone else an opportunity to be able to do whatever that is. So don’t overload yourself where you’re getting diminishing returns and communicate to your team and your group in your family what works for you and what messes you up because they are not walking in your shoes. They don’t feel your invisible symptoms. They know you can’t expect them to have an appropriate.

55:06 And but that empathy that you think they should.

55:12 And I just love this quote This is on SRNA Web site which is “Alone we can do so little, together we can do so much” said Helen Keller. I think that kind of sums it all up.

55:25 Yes that’s a great quote and I agree completely with Katherine. I think the take home message for patients with these rare disorders is to be your own advocate and really communicate what you’re feeling with what’s going on with your family your health care providers your job anyone that is you know you come in day to day contact with and not everything is going to be your neurologic conditions. A lot of things influence the symptoms of the neurologic conditions and so that’s why it’s important to have open honest discussions with your health care providers and you also advocated for yourself to say you know your own body and something is not right. Have your team work with you and not against you. I know it can get frustrating at times but trust me it definitely will pay off if you continue to advocate for yourself.

56:24 Thank you both for that I appreciate it.

56:28 On behalf of SRNA and all of the community who’s listening. Yours Paula and Katherine your time and your expertise too that you gave today. I want to remind everybody who’s listening that this podcast has been recorded and will be on SRNA Web site wearesrna.org. There are a number of questions we weren’t able to get to today and I apologize for that. I hope that the heart of many of the questions were addressed here. I also want to remind everybody that all of the podcast that we’ve done over the last couple of years are recorded. And on wearesrna.org and there are a number of previous podcasts about a number of these issues like pain and fatigue and cognitive issues and things that we’ve discussed here that we some things that we weren’t able to pass on very much so I recommend if you have further questions or want more details.

57:24 The podcasts are a great resource for that and everybody keep a look out for the announcements for next month’s podcast and again on behalf of SRNA. Thanks everybody for listening. Have a good week.

1 https://www.calm.com/

2 State Vocational Rehabilitation agencies https://www.fda.gov/downloads/aboutfda/workingatfda/ucm277757.pdf

3 Job Accommodation Network (JAN) https://askjan.org/

4 FMLA (Family & Medical Leave) https://www.dol.gov/general/topic/benefits-leave/fmla

5 SRNA Medical Professional Network https://wearesrna.org/living-with-myelitis/medical-professional-network/

6 Find your elected officials https://www.commoncause.org/take-action/find-elected-officials/

7 How to Contact Your Elected Officials https://www.usa.gov/elected-officials

8 Health Journeys https://www.healthjourneys.com/

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