00:00 Hello everyone and welcome to SRNAs. Ask the Expert podcast series this podcast is entitled the role of nutrition in managing your health. I’m Sam Hughes from the CONQUER program (note1 ) at UT Southwestern Medical Center in Dallas Texas. And I’ll be moderating today’s podcast. SRNA is a nonprofit focused on support education and research of rare neuro immune disorders. You can learn more about SRNA 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 Tad Campbell and Christopher Flores. Chad Campbell is a registered dietitian in Dallas Texas. He’s a faculty member in the department of Clinical Nutrition at UT Southwestern Medical Center.

00:53 In addition to teaching graduate students he sees patients in an ALS clinic the UT Southwestern nutrition clinic and the total life care clinic at the Clinical Center for multiple sclerosis. Christopher Flores is a registered dietitian at Children’s Health in Dallas Texas. He has worked in pediatrics for the last five years. He started working in weight management and now works in the neurology department. His main focus is on the ketogenic diet and the medium chain triglyceride diet. He is also a provider in the pediatric clinic at Children’s Health. Welcome and thank you both for joining us today.

01:30 Now before we jump into some of the specific questions that were asked by patients and other members of the community I wanted to just kind of give you guys a chance to give a broad overview of what the current understanding is generally about nutrition and proper nutrition and a healthy diet. Kind of from both the adult and the Pediatric perspective. So Tad I’ll just throw it over to you first and if you want to kind of give us a broad overview of what our understanding of nutrition is currently That would be great. Sure

02:07 So first thanks for having us today. I think that maybe the first thing that you should think of when you think of nutrition is what’s with the best nutrition is really a balanced and varied diet. MyPlate is the government program put out by the USDA (note2 ) that was once The Four Food Groups and then The Pyramid and now we’re at MyPlate. But it is a really good exam a good job of providing a visual example of what your plate should look like and you can sort of tell from the proportions on that plate kind of how it should flow into your real life. So for instance you know half a plate being fruits and vegetables keeping a quarter of the plate for grains and then making half of those whole grains and a quarter of the plate for a lean protein and then maybe a serving of dairy or a little bit of a healthy fat with that meal.

03:01 By and large that is sort of the way we should all be eating. But let’s don’t forget there are other things like hydration and weight management. Those are pretty important they’re important in general nutrition but they’re also very important in the world of neuro muscular diseases. And I’m sure we’ll talk more about those here in a bit.

03:23 Yes. Thanks for that kind of broad overview.

03:25 And Chris is there any other Anything else you’d like to add or any special considerations from the pediatric point of view in terms of diet nutrition.

03:36 Yes. Well thank you for having me as well. So along with Tad it’s pretty much somewhat the same as far as dietary goes for pediatrics balance meals plenty of fruits and vegetables. The main thing that I stress out is we get started at a young age. It’s easier to set good examples and good habits while they’re young because once they get old there’s going to be a lot harder to change those habits because eating habits is always stress to my parents that you know we promote balance meal always promote healthy foods just because our kids don’t give in to all their wants when it comes to sweets or sugar beverages. I’ll have to add to that right now.

04:19 Yeah I think we all know we all can take taken note from the nutrition playbook about our general dietary habits and a lot of the questions that came in from patients were in particular about you know their disease process. And we’re working with patients who have these autoimmune these inflammatory conditions of the central nervous system. And there’s a lot of talk and controversy about what you should or shouldn’t eat with diet as you should or shouldn’t be on if you have these disorders or really any kind of disorder. There’s a lot of talk out there but I think that people are very confused about what might actually be scientifically valid versus what’s just anecdotal what’s just talked about. And so there are a lot of questions that came in that were more specifically about what do we take home from this as people who have some kind of inflammatory process going on that’s having an effect on our neurological abilities.

05:28 So from the nutrition and diet standpoint are there any specific recommendations or even broad recommendations for people who have inflammatory processes going on are auto immune diseases and how they can or can’t can or can’t affect that be it diet. Ted can you speak to that a little bit.

05:52 Absolutely. There’s so what I have what really we focus on and what we find being questioned a lot and there are muscular disease population is what can I do to deal with kind of these major things like fatigue and inflammation. So yeah I can tell you broadly what we can do and we can dive in as deeply as you will as you’d like for each of those. So if you think weight management fatigue and inflammation those are the three things that we hear the most about the three things that we can most affect these diseases with diet. But there are other things to be to manage as well so if you have common comorbidities like diabetes or hypertension or if you’ve got elevated cholesterol those need to be dealt with as well. But those things can launch their own inflammatory process. So first let’s get those under control.

06:47 And second of all the thing that we could all do regardless of health is to achieve and maintain a healthy weight. You know in neurology that we’re carrying extra weight alone is inflammatory. But when you have sort of a debilitating disease that may require that you have a caretaker to help you it may require that you have to transfer from a wheelchair to another seat or a toilet that can be difficult. And so the closer we are to our healthy weight than the easier those sort of life experiences become and how you get there you get there by following that balance and very diet that I mentioned in addition to that drinking water you know getting plenty of water with neuro neurological diseases a lot of times bladders are affected bowel health has something to be concerned about.

07:44 And so rather than avoid water we’ve got to drink plenty of it. And then one thing that I notice a lot in regards to fatigue is we can’t skip meals. It’s one of those things that seems very basic like everyone would know that. But when you’re the one skipping the meal you don’t really think about it that much you’ve just developed the habit that you don’t eat breakfast or you don’t eat lunch just the way it worked out and then you find that you’re sinking a few hours later and just getting a little slower or not quite as energetic. Have meals throughout the day. You know it’s if it’s difficult to start eating a meal that you’ve skipped for years you can start slow start with some fruit. Have a yogurt something small Over time you’ll want that food and you’ll likely find that your fatigue has decreased as well.

08:33 There’s also a ton of things we can do foods at least that we should eat to help control inflammation or avoid because we know that there are proinflammatory you know weight you get to the point of weight management is very important for you know general health and these disease processes can render people immobile many times and which can lead to an activity and weight gain.

09:00 So as a follow up question to that is it I think people think oh I need to lose weight so I’m going. So I have to exercise. But wait I can’t. You know I can’t do a lot of you know aerobic exercises and things to still lose weight. Can I really get to a healthy weight just through diet. Is that is that a concern that that is valid.

09:27 So I would argue that probably there are exercises that you can do even you know there are seated exercises for those who are confined to wheelchairs. Pool exercise is walking in the pool. Swimming is great. If you can’t swim walking it’s fine. But at any rate do what you can. Any increased movement is good for increasing your calorie needs which then helps with weight loss. It’s also good for maintaining any function that you currently have stretches are great for that. But yeah exercise is doable if you can’t exercise for some reason. And then there are definitely we all have things we can improve in our diet. So there are improvements that can be made there. Some people may find it difficult to lose weight just through diet. But that’s why I mean you should see a dietitian and get some help with that.

10:21 Chris from the from the pediatric side.

10:24 I know that you know kind of globally at least in the United States there’s a lot of conversation and concern about you know the increased weight of our children the obesity epidemic in our kids. Do you. Can you speak maybe a little to the way that that affects kids with these different disorders with different neurological diseases.

10:47 And any concerns from the weight standpoint with children yes of course.

10:56 So like I tended to increase my body weight or more precisely increased body fat inflammation. Inflammation does go up. Adipose tissue does produce inflammatory markers. So that will aggravate the inflammation state and also on top of that with excess body weight. Not only comes in more inflammation but the risk for other diseases like diabetes hypertension high cholesterol which just add to our current situation that some of the kids are on at the moment as far as for weight management it goes along with what Tad said. Exercise is important and if you can do something do what you can. The benefits of course are mobility muscle mass you will produce more muscle mass which in turn will help you burn more calories. But the main thing is trying to get the kids out of the comfort zone and start to do a little bit of more mobility and watching exactly what they eat not just focus on those sweets or the carbs because most of the kids I see are typically eating diets that are fairly carbohydrates.

12:11 I would say maybe at least 60 percent of their diet is probably carbs. So I’d definitely try to focus on reducing the carb amount as well as limiting some of their calories while promoting some physical activity.

12:27 Yeah. I think a lot of us just really need to be more conscious of what we’re eating.

12:31 I think if you ask most people myself included you know what. What did you eat yesterday or what is your normal diet. I wouldn’t necessarily be able to tell you everything that I eat all the time but it’s kind of being conscious of what you’re eating and why you’re eating it.

12:47 There’s some questions came in there there’s a question that came and now live that I think kind of speaks to a lot of the questions that came in. I’ve been on a gluten free diet since my diagnosis of NMO in 2013. I try to be as paleo as possible too. At this time my symptoms have resolved, you recommend this type of diet.

13:07 Now I think that there’s you know especially nowadays there’s a lot of fad diets out there and concern and conversations about gluten and dairy very specific kind of vegan or paleo kind of diets. And anecdotally you hear patients who say oh I did this I took this out of my diet or I supplemented with this. And I feel a lot better. Can you guys speak to either you know these particular concerns especially maybe gluten or something along those lines. And are there any specific dietary recommendations especially from pro or anti-inflammatory diet standpoint and any thoughts as to especially if there’s any scientific evidence out there about any validity to specific diets or supplementation.

14:09 Sure. Chris do you want did you want to start or do you want me to start. And yet so you mentioned paleo and gluten free and the other sort of popular diets and unfortunately the evidence isn’t that strong supporting any of those. However I would say if you saw an improvement after following a diet continue to do that you know if it if it’s working for you then keep doing it if it’s not too difficult. However regarding I mean paleo and gluten free in particular there are some things that you should probably watch for you should definitely be taking a multi-Vitamin if you’re doing any diet that ruled out entire food groups or large parts of food groups you’re likely missing some nutrients and particularly gluten free if you if you because. Because what a lot of people will do is they’ll start their gluten free journey by getting rid of bread from their diet. Well they may not realize that our bread supply has been fortified for many years with a lot of Vitamins and minerals that you’re now not getting.

15:11 And so definitely start a multi-Vitamin.

15:16 What is the rest of your question?. Oh inflammation. What to do for inflammation.

15:21 Yeah. Are there any dietary recommendations about anti-inflammatory diet.

15:28 Yes. So unfortunately you know there’s not a lot of diet information in the scientific literature that’s focus specifically on TM but there are there is some that’s focused on neuro muscular diseases in general and the notion of inflammation. And there was actually a really good review put out in American Society for Neurochemistry in January of 2015 (note3 ) that talked about diet inflammation. And so what I can give you here I’ll give you now is sort of their list of things that they’d recommend and I think everyone will agree with all of them. But starting with increasing fruits and vegetables. So fruits and vegetables naturally have a lot of anti-oxidants in them. So that’s beneficial. Decreasing your intake of saturated animal fat. And if you’re thinking of animal fat what saturated it’s anything that you could see at room temperature a solid so like butter or the rind on a steak that sort of marbling in a steak avoiding trans fats trans fats are inflammatory they’re being removed from the diet or from the food supply.

16:30 But you should consciously look at labels and make sure you’re not consuming any of them. Limiting the consumption of red meat. This is a recommendation that’s pretty much made for everyone. So this is sort of the genesis of meat with Mondays that people started a while back avoiding sugar sweetened drinks. Chris mentioned that about children and absolutely if you can start that habit at a young age or prevent that habit the habit of drinking them from forming at a young age makes it much easier to move into adulthood with better habits. Similarly avoiding hyper caloric meals so over eating just the process of getting too many calories at once is inflammatory.

17:08 You can decrease dietary sodium. Another thing that most all of us should do and I think most people would be surprised to know that the majority of the sodium we get in our diet doesn’t come from the salt shaker it comes from processed foods and ingredients that are in sort of the store bought convenience items. And then lastly avoiding cow’s milk. Oddly there is a tiny protein in cow’s milk fat that I’m sorry I think cow’s milk I meant avoiding cow’s milk fat. So drinking skim milk will prevent you from consuming that particular protein and help decrease inflammation.

17:50 That’s a lot of I think that’s a lot of generally good information of all generally good. And

17:55 then another thing you can do is sort of that we don’t really talk that much about and you don’t hear it a lot in people’s discussion of nutrition but lifestyle choices. You know if you think about sort of what you can control and your health your health is going to be determined by you know your environment your genes and then your lifestyle or your genes have been set your environment depending on your age may have been set but your lifestyle choices are your decision. So whether you drink too much or smoke or do drugs or exercise or not. Those are all things that you know. Not drinking not smoking do exercise. These are things that will help decrease inflammation simply.

18:38 Yeah. And

18:39 Chris from your from your experience working with kids I know your background has been working or it’s an interesting experience with the ketogenic diet and knowing how the ketogenic diet can work with children with seizure disorders. Do you have anything to add to what Tad was saying about children with neurological disorders specifically inflammatory neurological disorders if you can speak to that based on your experience with different diet yes.

19:16 Definitely so I just want to add to what Tad said as far as for inflammation diet that dietary information. The main thing that I’ve noticed in the articles that I’ve looked up is calorie restriction increase in vegetables and sometimes even Vitamin D supplementation. Like Tad said with the vegetables we get more antioxidants But we also get fiber and fiber’s very important for the good bacteria. I know that’s something that they’re looking into now as far as how it affects some of the inflammation that we see. But in addition to anti-oxidants we get to provide a good healthy gut bacteria. Vitamin D supplementation has also been seen. It shows that most people are pretty low with Vitamin D or U.S. they’re low in Vitamin D. So supplementation with that seems to be something of a topic. See how it helps as far as for the ketogenic diet that’s something that’s coming along with not only seizure disorders but also autism and even MS as well.

20:27 They’re trying to see how the ketones that we produce when we’re on a diet might somehow affect the genetic makeup of their mitochondria or affect how the mitochondria works. They’re trying to see if any defects in the mitochondria can lead to some of the demyelination that they see with some of the diseases. It’s nothing. No details yet but it’s something that people are starting to look at. So we don’t have any really good recommendations as far as for disease inflammation as far as how it will work at this moment.

21:01 You know there was because this came in pacifically about the ketogenic diet and I think at least from my reading that’s probably one of the most welldescribed specific diet.

21:15 The really for seizure disorders. Could you Chris kind of dive into a little bit more about what the ketogenic diet is and why they said a little bit about why it works but to give a lay person view of what that means.

21:28 Definitely. So a true ketogenic diet. And what I mean true it’s a diet that 90 percent fat and some of the diets out there that are said to be ketogenic are more of a modified Atkins which is just a lower carb amount. Typically maybe 20 grams a day. But a true ketogenic diet is 90 percent fat. It’s actually a very difficult diet to follow and it needs to be monitored by professionals for labs. You know in case they are becoming too exudate making sure their BHB, their beta-hydroxybutyrate it is not too elevated and that’s how we measure ketones in the blood. But basically with the ketogenic diet we pretty much try to mimic starvation mode we eliminate carbs we provide enough protein just to meet the DRI by eliminating the carbs we switch or our fuel to fat.

22:24 Now fat’s going to produce ketones which is another fuel source for our body our body prefers carbs prefers carbs. But when it doesn’t have carbs it goes for ketones. Now why are ketones important. Well ketones are able to cross the blood brain barrier and the brain can use it for energy. Now exactly how it works for seizure control. That’s what people are looking into all other talks or how it affects the mitochondria or it may have some effect on the genetic makeup a certain cells as far as the ketones go. But with a diet. There also are some complications that we might see. One of them is typically constipation. Again it’s a very high fat diet low fiber constipation will occur. And the other one that we look out for is acidosis is when there’s too many ketones in the blood and it drops your pH which is not good for your body.

23:24 Typically that occurs due to poor hydration or sometimes kids just really take to the diet and become very cathartic very fast. So those are the two main complications that we see again with a higher ketogenic diet the high fat diet so other possible complications or kidney stones. And for this reason a true ketogenic diet really needs to be monitored by a professional. A modified Atkins is more doable at home you know that’s one of those things.

23:55 Don’t try this at home kind of thing. Yeah.

23:59 And I think that kind of speaks to like Tad was saying before if you’re going to be attempting a diet that takes out either takes out whole food groups or focuses entirely on one. Even if it’s of you know this ketogenic diet as kind of the end of the spectrum the far end of the spectrum you have to be thinking about you know what you’re not getting that your body needs and supplementation and it kind of moves into some other questions that came in and it was really about dietary supplementation. Chris you mentioned Vitamin D and there’s a lot of evidence out there about Vitamin D and multiple sclerosis. And so I’m wondering if you guys can speak a little bit too. I guess one the role of Vitamin D from a from a from a diet standpoint in particular and then is there any other evidence to any other specific supplements Vitamins minerals etc. that have been shown or or even might potentially have a beneficial effect on inflammatory disease processes. Tad can you speak to that for a little bit. Sure

25:15 I mean I’ll tell you you’re right there’s a lot of a lot of information about Vitamin D and MS and consequently Vitamin D is generally managed medically by the physician whenever we’re in clinic. So I’m not often recommending Vitamin D because I feel like the doctors are watching this. But yeah I mean most people are producing their own Vitamin D from sunlight or getting it from dietary intake. But there’s so aside from Vitamin D there’s other things you know. Fish oil is you know the nice Omega 3 fish oil has been shown to decrease inflammation in the anti-inflammatories also at least MS has been documented in reducing relapses. Alpha Lipoic Acid is another supplement that I find I see a lot of patients are taking and that is generally done for its immunomodulatory effect and anti-inflammatory properties. Honestly if your disease has touched your bladder my recommendation is that you take a cranberry extract daily or drink cranberry juice.

26:25 Think of that as a supplement but it is and it can be beneficial in reducing urinary tract infections and other popular supplements might be things like turmeric. Ginko Biloba there’s been a study at least that showed that it has has somewhat helped with fatigue. CoQ-10 is a common supplement that people will take it’s actually a Coenzyme that your body uses in the production of energy and it’s been used. It’s been shown to help improve fatigue and even depression.

27:02 And Chris is there anything that you want to add to that list or any other thoughts. Again from the pediatric standpoint I understanding that you know kids you know when you’re talking about a 3 year old versus a 10 year old that they have different needs in and of themselves than that in that time span from a diet standpoint.

27:25 Can you speak to any specific needs of children in terms of diet supplementation definitely So like Tad said in our clinic as well. Vitamin D is always managed by the physician and they always provide the amount to give. But what we see is that for the most part most kids are low. Typically kids who are overweight or have extra weight on them. Now why it’s low it’s you know could be you know diet intake or maybe the increased amount of adipose tissue might cause more to be stored. You know it could be multi-factorial But you know some of the fat or some of the benefits of Vitamin D is you know of course we think Bone Health is the main one. But you know it also acts as a signal pathway for cell communication or at least initiated the start for that. And there are some genomic effects.

28:16 So basically the Vitamin D can go into the cell into the nucleus and act as a hormone and potentially you know affect transcription or transcription of certain genes. Now how it affects MS in that sense I don’t know that as far as I go into it. But for the most part that’s something that we see with the kids not just with MS but just in general. Typically when extra weight is seen Vitamin D is typically low whether they’re taking in dairy and or not. As for the urinary tract infection the only other thing I would like to add to that is blueberry is another one that can go hand-in-hand with cranberry. I know that one helps get rid of the bacteria and the other one helps prevent the bacteria from adhering. So when taken together I think it’s as a better effect.

29:14 And I think it’s important because this comes up a lot.

29:18 But when we talked about cranberry supplementation if you’re going to drink cranberry juice make sure that it’s 100 percent cranberry juice. Cranberry cocktail that’s filled with sugar. I think people will make that mistake sometimes accidentally.

29:35 So there is a question that came in.

29:38 I was a little more specific that maybe you guys can speak to. In the case that many times our patients when they’re struck with a spinal cord injury spinal cord attack a transverse myelitis and then they move into a rehab unit an inpatient kind of intensive rehab unit. I mean people think a lot about the PT aspect of it but not many people think about you know during the course of PT is there anything to think about from the diet standpoint in terms of helping support the physical activity that they’ll need to undergo through a therapeutic standpoint. Well you know in a therapeutic way and to think about the nutrition that’s needed to help move that along is that is that something to think about or does it make much of a difference.

30:36 Tad? Listen you’re talking to a dietician I think it’s always something to think about.

30:39 But you know it should be kept in mind that physical therapy is going to increase your calorie needs you’re actually exercising for longer periods of time so you know if you are already a healthy weight and know that you’ll need to you know make up those calories or you’ll likely lose weight if you are if you need to lose weight. I would say probably you know don’t start don’t be don’t get hungry but if you’re burning more calories that can be a good thing and it can also help you in your process of achieving a healthy weight. And again I mentioned water and hydration and you know especially if you’re PT is going to have you sweating and or even just have you more active than you typically are stay hydrated.

31:26 Those are definitely things to be concerned about.

31:29 Yeah. And then also kind of moving a little bit from that.

31:35 Many times our patients if they’re immobile and will get pressure sores or some kind of wound that might have trouble healing. Now I’m wondering if you guys can speak a little bit to the benefits of diet during the healing process of wounds and things of that nature.

32:02 Yes. So I start Tad. So the main things that we look we try to do when we see ulcers who are trying to treat them is definitely adequate protein intake making sure they get enough protein to meet their DRI (note4 ) sometimes extra depending on their age group or bump it up a bit. And also, Vitamin C and fluids of course depending on how much or how deep it is you know they could potentially lose more fluids and also Vitamin C helps with the repair helps with college and repair. So that’s another supplement we’re trying to add to their diet.

32:42 And I would agree with Chris on all of that. I mean and then maybe even go a little further and discuss with the patient the benefits of shifting your weight hourly to make sure that you’re not putting too much pressure on one spot for any length of time.

33:02 Yeah I think that’s all very important that that comes up definitely from time to time especially with the patients who are who are paralyzed from the waist down or something along those lines. One thing I am glad that we were able to have both of you on from both the pediatric and the adult side. I think an important thing for us to keep in mind is the lifespan dietary needs. And you know what. What children need are different from what you know adults need. And also as we move into more of the geriatric phase of life the later life as needs change. So I think what might be helpful is if you guys could just speak a little bit more to the specific need I think you know if you’re a parent with a child especially one who has a neurological disorder like the ones that we work with you’re thinking so much about all the things that we can do to help them by remembering you know the different needs of children through the course of their childhood from a diet standpoint and then moving into adulthood.

34:09 Can you guys speak to that a little bit a little bit deeper as to the differences between what one should be thinking about in childhood versus adulthood.

34:20 Yes. I think going to start with childhood and then we can go to adulthood. So with children I mean the main thing is you know at a young age they are going to need more calories the amount of calories will also depend also on the activity and what they’re going to hit growth spurts or not. Now the one thing that I always tell parents is let the kid deal with hunger if he’s hungry. Let him eat. offer healthy food. Don’t force them to eat. That can definitely start some bad habits later on to other. Need finish everything when they’re not really that hungry. Hydration is also important. Whether or be a young kid or an adult. Hydration is one of the biggest issues we see here typically because kids will prefer to drink juice or soda rather than water. I always recommend parents to offer water.

35:20 They can mix a little bit of flavoring to do they want. But the main thing is to get that habit started. Now I prefer water but if we need to add some flavor to it you know I prefer that over its use or a soda. As a kid I believe that juice is really not needed. If there wasn’t drinking apple juice I prefer them to eat an apple. And I don’t know where they get the juice and the flavor from the apple but they also get fiber and more Vitamins and minerals. And just from the juice setting a proper meal plan is also important to know that you know there are three meals one or two snacks is fine. But we definitely don’t want to graze all day on snacks. That’s something I see that’s pretty common with the kids they’ll walk in with a bag of chips or drink some

36:08 Soda while they’re waiting or while they’re just walking in and I definitely recommend parents stay away from that. Don’t let them graze set mealtimes. set snack times. Avoid that habit. And then something else is pretty common with most of my family too. There’s for some reason a popularity with a bedtime meal typically a bowl of cereal or some pastries right before bed. I always try to tell them to avoid that. Not only is that very high in calories but also they’re going to bet they’re going to store that weight and the weight is going to keep going up. Vitamins and minerals that focus on typically are your calcium Vitamin D phosphorus and zinc. Zinc is important for growth as well. So that’s probably the top one to look for. I would recommend a multivitamin just in general because most kids are getting a balanced meal.

37:07 And then Tad can you speak to kind of a transition from you know the growing developing style into more of the mature adult.

37:16 And you know you spoke before about general health and diet kind of through the adult lifespan especially as I think as we move into the geriatric phase of life how diet dietary needs change or especially differences between men and women and things of that nature. Sure. So

37:34 the hope is that by the time you’ve reached adulthood Chris has taught you really good habits. And so it’s you know as a typical adult if you’re eating good balanced and varied diet like I discussed earlier staying hydrated getting some regular exercise then you’re probably fine though if you’ve chosen a diet that cuts out entire food groups if you have a certain disdain for a certain type of food and just won’t eat it then you may also need a multi-Vitamin and that’s fine you can just start that. But really where we start to see the challenges are if you if you move into sort of older age without those habits then it may be more difficult to change the habits but even worse it’s going to be hard to lose weight. So if you go into older age with extra weight it’s going to be harder to get that off than it used to be for a couple of reasons one you just need fewer calories.

38:32 Your body as you get older loses muscle mass. Like Chris said earlier you know muscle mass will have a higher calorie requirement than other tissue. And so as you lose that mass then you now need fewer calories if you need fewer calories. You have to eat less than you need in order to lose weight. So at some point you just it just becomes really difficult to lose weight. Add to that that movement gets more difficult as we get older and more infirm then it’s even harder than to get regular exercise. So those things just make it all the more important to develop you know good healthy nutritional habits early in life and take them with you all the way through regarding men and women.

39:19 Pre-menopause women will need more iron post-menopause not so much. So no to that as you add things like iron supplementation to your diet you may experience constipation with that which is another nutritional concern one that you would likely want to work on with your dietitian.

39:40 Let’s talk about you know yes we here in Dallas you guys are worked with us and great and we have access to you guys the dietitians in our in our medical center here. And there are a lot of patients out there who have these disorders TM and NMO and ADEM are and places where there might not be this kind of professional dietitian available kind of at the fingertips of the of their physicians their providers or even for the patient. Do you have any resources that that you would recommend to people who might not have access to a professional dietitian to help kind of plan and educate about educate them about diet.

40:33 Sure I would say that that used the Association websites they have a lot of good information you know like for instance MDA’s website, Muscular Dystrophy Association (note5 ) they’ve got some good resources as does the National MS Society (note6 ). Myelitis.org (note7 ) a lot of these disease specific associations and societies will have information that may be difficult to find because the population is looking for it. Eatright.org (note8 ) is a great place to go for general diet information. And then often times I’m what I see is a lot of people who maybe they know what to do but don’t really know how to cook or how to prepare food. You know I spend a lot of time sending people to web sites where they can find recipes and snack ideas that are healthy easy to do. And I’ll tell you for fun I tell people to take a cooking class and that’s not a resource about this in particular but if you don’t know how to cook.

41:35 Take a cooking class it’s fun and there is no way to eat super healthy and eat out. You need to be eating at home and preparing your own foods from scratch.

41:45 Yeah I think that’s an important thing to keep in mind here.

41:48 You know I think it’s the 21st century and we have information at our fingertips and we can know you know the most cutting edge information about what’s proper diet and how to how to do all of this. But if you don’t know how to cook or don’t have those resources and then it doesn’t help very much. So I think that’s something that gets neglected a lot of the times in these kinds of conversations about diet. And I think we as people tend to err on the side of well the dietitian will tell me what to eat or they’ll tell me what to do. And there’s a certain we all as individuals not even not solely as individuals with diseases but just as healthy as people in general who are you know living day to day after take some ownership and making our food and finding the food that we need to eat and being conscious of it and starting young.

42:50 I think it’s like Chris was saying getting those habits set early will really define the way that that human as an adult will live their life and it’s a lot harder to change habits. The older you get the more ingrained that they are. So I think that that’s very important to hit on.

43:14 And I would even say that you know if in discussing you know cooking your own foods or sometimes you know that you know my dominant hand is spastic and I’m not able to chop or prepare or whatever. You know the task may be looking into adaptive devices. You know they’re cutting boards that will hold your vegetable for you while you cut it. (note9 ) You know there are knives that you don’t have to be so accurate with their rocker knives and go back and forth. (note10) And there’s all kinds of utensils and adaptive devices available. You know if you know to look for them that might make your ability to cook even better or easier.

43:50 Now if I could add to that also keeping it simple at first. For those that are just going start out you know don’t try to do too much at once. Definitely make small simple small steps and simple goals whether it would be just as simple as start to add more vegetables to your meal. Half the plate vegetables whatever vegetable you would like. Will be will be a step in the right direction. So to I will try to do too much at once. And that’s when they get burned out especially when they’re starting out.

44:20 Yeah I just from my own my own experience I’m certainly not a cook.

44:26 But when I do cook it does have to be very simple and one of my favorite meal that I make myself is just the salmon fillet and some chopped up Brussels sprouts. I just salt and pepper it all and throw it in the oven for about 10 minutes and then I have a meal and it’s just it’s just the time when I feel the most healthy when I can do something like that. But it’s very simple. And in my experience that’s very helpful to me. So I think that’s an important point Chris especially starting out is to just think of something simple and easy and healthy because it doesn’t have to be complicated to be healthy. Exactly. So we’re moving into the later part of the hour. I wanted to kind of throw it back at you guys a little bit.

45:19 As we as we slow down here to kind of give us your basic takeaways from the talk today. The basic overview of you know what are the main points of someone who’s living with TM or NMO or other rare inflammatory diseases neurological diseases about diet and nutrition how they can incorporate it into their lives. What are things to think about in terms of their diet book from the pediatric and the adults standpoint.

45:54 Just from takeaway points for the hour Tad would you like to start so I mean I guess the first thing I would say is achieve and maintain a healthy weight. So if you’re overweight get with someone and work join Weight Watchers is a great program to help with that if you do if you can’t get to a dietitian if you aren’t able to see a professional. Weight Watchers is great but achieve and maintain a healthy weight and stay hydrated. Drink plenty of water if you’re if you’ve got a bladder concern urgency or retention or any sort of problems with your bladder. What we have to do is find a way around that we’ve got to figure out how do we still get enough water into you so that you stay hydrated and stay healthy and still accommodate sort of the special situation that the bladder problems may create as you’re working to get to your healthy weight.

46:49 Do so with a broad and varied diet. Eat a lot of colors eat a lot of textures try different things. I had a lady tell me the other day I don’t like asparagus but I’ve never had it. And so how do you know you don’t like asparagus. No Mike. You know it’s very easy to sort of fall into the things we’ve always done because that’s what we like but challenge your beliefs around food. You know maybe you decided you didn’t like asparagus when you were 11 but you’re 45 now. Try it again. You know try it try it with something on it. Little parmesan cheese or something that changes the flavor for you something to get excited about. But try to eat a lot of different fruits and vegetables.

47:27 And then as far as grains go make sure you’re getting whole grains. Maybe make it your habit to have whole grain bread at home and whole grain cereals and whole grain pastas and you don’t do white breads at home maybe that are white grains. Maybe that’s the rule. If you just really love them you can have them when you go out to eat. But when you eat at home you know try to make them all whole grains whatever gets fat that change implemented for you. And then finally I would say that most of us should be incorporating Pre and probiotics into our diet. Chris spoke earlier about the benefits of fiber which are gut bacteria. I would say that you know if you if you don’t eat yogurt or if you do eat yogurt you don’t eat it regularly.

48:12 Try eating it regularly. Think that’s beneficial to your gut. Increased fiber is as well. And if you’ve ever taken and you’re interested you should maybe try a probiotic. I find those in clinic at least to be quite useful for people who have concerns with their bowels.

48:31 And Chris what are your final thoughts along with Tad.

48:37 Pretty much everything we said was spot on. You know I would also focus on portion control making sure that you know the biggest portion of our plate is in our starches. You know like Tad said. Definitely go for a whole wheat but you still don’t want to make the biggest part of your plate. Nothing but pasta are nothing but potatoes. The biggest portion I always want to be you always want to make it the vegetables and keep them colorful and hydration. I will stress that again too. Hydration is very important. A lot of us take it for granted. You know an easy trick to get a little bit more water in and work on our portions is always drink a cup of water before your meal during your meal and after your meal.

49:16 Yeah.

49:17 And a big takeaway for me from all of these come today and from other conversations that I’ve had about nutrition is you know especially when it comes to these kinds of disorders it’s not necessarily a one size fits all. There’s not eat this don’t eat this kind of kind of answer that we all wish that there were some times and there’s not a lot of studies and scientific data out there about these particular disorders and what to do. There’s a lot of new research going into it and hopefully that will be there will be some more clear answers in the future. But right now I think it’s very important that the takeaway be the the broad you know healthy eating healthy lifestyles hydration fruits vegetables whole grains lean meats very diet is important for everybody and no different for people with these kind of inflammatory neurologic disorder.

50:16 And if you have a diet and it works for you like you said earlier tired it makes you feel better. And it’s and it’s sustainable then that’s great. Go for it. But remember that it might not. That same thing might not work for the neighbor next door. I think that’s very important for us to remember. So I want to thank you guys Tad and Chris a lot for your time and your energies today. Your expertise from the community. I want to thank all of the listeners everybody who is there to hear this. And all of your questions and to SRNA for this this platform to educate people so I hope everybody has a great week. Thanks again. Tad and Chris thank you.

51:03 Thank you.

1 CONQUER (Collaboration On Neuroimmunology: Question, Understand, Educate, Restore) Project to benefit TM research at UT Southwestern.

2 U.S. Department of Agriculture MyPlate https://www.choosemyplate.gov/

3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4342365/

4 The DRI (Dietary Reference Intake) is 0.8 grams of protein per kilogram of body weight, or 0.36 grams per pound.

5 https://www.mda.org/quest/article/quest-article-nutritional-considerations-while-corticosteroids

6 https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Diet-Nutrition

7 https://wearesrna.org/living-with-myelitis/resources/resource-library/?fwp_topics=nutrition

8 https://www.eatright.org/

9 Etac Deluxe One-Handed Paring Board With Rocker Knife https://www.amazon.com/gp/product/B06XFW76WV/

10 Rocking T-knife https://www.amazon.com/Maxi-Aids-Rocking-T-Knife/dp/B00014VWUW/

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