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Emotional Health & Stress Management in NMO – Breakout Session – 2018 NMO Patient Day

Dr. Ira Lesser:

Okay. So, if you’re here, this is the talk on emotional reactions and stress reduction. Thank you all for coming. I’m Ira Lesser, I’m Chair of Psychiatry at Harbor UCLA Medical Center, a friend and colleague of Mike Yemen who invited me to come and talk. Was anybody here… I gave one of these last year. Was anybody here last year? Or this is… You were here last year. Didn’t remember anything I said, so came again for… No, just kidding. Just kidding. You still have stress. Okay. All right. So, first truth in advertising. Okay> I know very little about NMO. Actually, before last year when Mike asked me to present here, I barely heard of that, so you are the experts in NMO and I am not. So, I hope to learn as much from you is as you learn from me.

Dr. Ira Lesser:

On the other hand, I’ve had a lot of experience working with patients with all sorts of emotional reactions to medical illness, psychiatric disorders, mood disorders, et cetera, and so what I want to do today is share some of that with you. But I’d really like this to be interactive. Okay? We have 30 minutes and then everybody going to move around, so if I cut you off, it’s only because other people may want to speak and we want to do it all within the 30 minutes.

Dr. Ira Lesser:

So, what I’d like to cover today, if we can, I’m going to put up some personal accounts, people who have NMO and have written in the literature, just as an introduction. And then, we’ll talk a little bit about emotions and feelings that you all may experience either as people with NMO or family members, and I want to differentiate some of those from reactions to the illness, in those that may actually be indicative of a psychiatric disorder like depression. Talk a little bit about how you could differentiate those.

Dr. Ira Lesser:

Then treatment, if it’s of a psychiatric… if it’s depression or bipolar disorder, we can talk very briefly about that. And then, spend most of the time talking about strategies for stress reduction, wellness, and then finish up with a little bit about resilience. Okay? All right. So, I am and have always been pretty independent. Even after I was diagnosed with NMO, I drove to my doctor’s appointments alone. Then I began losing my vision and I continued to live by myself, learned to prepare food and pay bills and do laundry all on my own. NMO and vision loss have taught me that it’s okay to ask for support. I’ve learned that most people are willing to assist, and that if you express gratitude, they’re even happier to help.

Dr. Ira Lesser:

Managing any type of relationship is difficult when also dealing with a chronic illness. Often, family, friends, and significant others don’t understand the physical limitations that accompany an NMO diagnosis. Whenever I say that I am tired, it’s not the same kind of tiredness and fatigue that a healthy person might experience after putting in a hard day at work. Rather, it’s an overwhelming feeling of total exhaustion that isn’t necessarily remedied with a nap or even a nights full sleep. My advice to other patients is to give as much as they can to their relationships, but to know their personal limits.

Dr. Ira Lesser:

Just a brief introduction. So, I’m curious, those of you who have NMO or live with people who do, what kinds of feelings and experiences in this realm do you have, if you’re willing to share? Yeah? Please.

Audience:

I’ve had NMO for 10 years now. And those first two years were very overwhelming and stressful and [inaudible 00:04:01]. But I feel also too that I had a handle on this illness [inaudible 00:04:41]. And I feel like because I’m not working anymore and I have this additional diagnosis I feel like I’m much more overwhelmed than I ever used to be in the last 10 years. [inaudible 00:05:00].

Dr. Ira Lesser:

Yeah. Okay. Okay. So, thank you for sharing that. Certainly, losing independence, not being able to work, whether to tell friends, how much, all of those are really key parts of this, so thank you for sharing that. Anybody else? Yes? Please.

Audience:

I’ve had NMO now for 15 years, and like many, I was first diagnosed with MS and I knew people with MS that had the progressive form went downhill so fast that that made me nervous. Well, I got better. What are you doing to me?

Audience:

Making it where we can hear you.

Audience:

I dealt with it through talking with them and stuff like that. And then, when I found out I had NMO, they were all like, “Well, thank God.” And I was like, “Read the Mayo Clinic thing and say that again.”

Dr. Ira Lesser:

Yeah, right. Right, right, right.

Audience:

But I was doing really well because I was still able to work full-time, even though I was losing my vision, and I’m in accounting so that was difficult. But four years ago, I lost enough vision in both eyes that I was let go and have just been getting back into doing daily things like going out shopping and things like that, and that’s where my anxiety lies. When I’m at home, I deal with the depression and everything fairly well because I’ve been diagnosed with clinical depression most of my adult life, and so I was already medicating for that. But it’s the anxiety when I’m out in public, especially when we have to go to someplace like the mall or a large grocery store and there are just people everywhere who are so rude. I walk with a white cane, and it’s obvious to most adults, “Hey, she can’t see,” and they just don’t care. They run right over you. They step on you. They cut between my mother and I when it’s obvious that I’m using her to guide myself through the store, that’s what I’m having trouble difficult doing.

Dr. Ira Lesser:

All right, thank you. Yeah, anybody else want to share either now or. Yes? Please.

Audience:

I think I was diagnosed about… well, in June or July of last year, but I’ve been dealing with optic neuritis since December of 2016. So, I’ve been very stable with Rituxan, and so I’ve decided I’m just going to live my life like I was before I got ill, which has been fun. So, I’ve been pursuing the things that I would have been naturally pursuing and trying to find that point where did I take too much on and what will occur to, let’s say, my career, if I do get another attack, if I do lose my full vision? So, there’s a certain amount of fear when the reality of it hits me, and then I go back into the denial that I’m going to be okay, I’m going to just keep going, I’m going to meet my goals. And then, it hits me again like, “Oh crap, but I might go blind or-

Dr. Ira Lesser:

Yeah. I’m not sure I’d call it denial yet.

Audience:

Yeah. Well, but that’s what I’m saying. I’m not sure yet like-

Dr. Ira Lesser:

That has a negative connotation. The last few slides we’ll talk about resilience, and it’s really dealing with what you’re dealt with as opposed to saying something negative like, “I’m in denial.”

Audience:

Well, that’s the thing, I think when I realized the magnitude of what this illness can do, then I wonder if I’m just being in denial when I decide to continue pursuing my dreams.

Dr. Ira Lesser:

Okay. Got it. Well, thank you. Okay. And if anybody wants to share later on, if they feel more comfortable, that’s fine. Let’s move along. So, you’ve heard about these reactions and reactions you’ve had, so the question would come up, is this normal? Is this unusual? Or do I have a psychiatric disorder? Am I mentally ill? Whatever. And clearly, the pain, the disability, the loss of function can, and usually does, lead to sadness, appropriately. You have to come to grips with not being able what you did before, maybe mourn in a sense of what you’ve lost, and that’s all a normal reaction. It’s not abnormal, it’s not a disease, it’s not a disorder.

Dr. Ira Lesser:

However, there are times that this kind of stressful experience can lead to more symptoms. Many people have a vulnerability to depression or a vulnerability to many illnesses, and the stress of having a different illness can actually trigger a depression in somebody who wasn’t depressed before. And then, the depression might become almost take on a life of its own and may need to be taken care of independent of the NMO. And the question is, how do you try to understand which of those it is?

Dr. Ira Lesser:

So, this is something that was shown both on the slides and what people talked about. There’s sadness, there’s depression, there’s hopelessness. These are all possibilities. Anxiety, like you talked about, anxiety about going out, uncertainty about what the future might bring. It could be anger. Why did this happen to me? It could be guilt, guilt being a burden, a burden on family members. It could be guilt if you’re the breadwinner and you can no longer do that. There may be guilt associated with that. Certainly, fear of the future, worsening of pain, paralysis, what might occur. Sleep problems, fatigue. And then, there’s emotional reactions. There can be mood swings in either direction. There could be irritability, feeling out of control, slower thinking, less productive.

Dr. Ira Lesser:

And actually, some of the medications, the steroid medications that people are off and on, they in and of itself can lead to mood changes. Some people who are on steroids get a lot of energy and almost manic-like sleep disturbance, increased energy. Other people on steroids may become more depressed, so we have the medication that’s used to treat the disorder may also cause emotional things.

Dr. Ira Lesser:

So, a study that was done just to talk about normalizing this, this was a study done with 70 ish patients. Most were women, as the disorder mostly affects women. Average age was 46. And very considerable numbers of people had either moderate or, in some cases, severe depression. So, if you look at the general population, women in general, if you compare just to women, maybe 15% of women have a depression at some point in time. That’s a usual statistic. And here we’re talking about 28% had moderate or severe depression. This was on a rating scale. 30% had mild to moderate. So, if you had that together, we’re talking about 50% or so, which is considerably more than you would find in people who don’t have NMO.

Dr. Ira Lesser:

So, clearly, there’s an increase of depressive symptoms in this disorder. And most concerning was that 20%, one fifth of the people, had some thoughts of hurting themselves, some kind of suicidal thinking, not making attempts necessarily, and the study did not report anybody who made a completed suicide, but people who had contemplated hurting themselves or taking their life. About a third of the people were on antidepressants, but still even those in a half of those who were on antidepressants, they still had significant symptoms. And that may be because the medication was used at too low of a dose or it needed to be changed. And so, this just gives you a sense of how depression may turn into this.

Dr. Ira Lesser:

So, I’m going to just give you the symptoms of what we consider a significant depression. Okay? And part of this is very difficult to diagnose depression when people also have a physical illness, because many of the symptoms of the physical illness are the same symptoms that we use to diagnose depression. So, if you want to use our criteria, you have to have a sustained mood disturbance for at least two weeks, feeling down, or feeling and interested in things, getting no pleasure out of activities most of the time. And then, you need to have things like a sleep disturbance, usual sleep disturbance in depression is having trouble sleeping, often waking up early in the morning, or some people oversleep. You have a change in weight. People’s appetite changes. Most of the time, it’s weight loss. Sometimes it’s weight gain. You become agitated or your movements become slowed down, so a change in the body movements. Fatigue, decreased concentration.

Dr. Ira Lesser:

Now, if you see all of these, these are symptoms of depression, but they’re also core symptoms of NMO. And so, it makes it very difficult, if you have these symptoms to say, “Do I also have a depression that might be treated independently of the NMO?” So, that makes this much more difficult. The things that we would focus more on are negative thinking, thinking always negatively, thinking very bad thoughts, not being able to think any kind of pleasurable thoughts, and then having recurrent thoughts of death or suicide, which becomes very concerning, because that is not a part of NMO. Fatigue is, maybe moving slowly is, but having those kinds of thoughts are not. So, that would make a therapist or a clinician be more concerned that maybe there’s an independent depression.

Dr. Ira Lesser:

They gave me this to make sure I knew who I was when I… Okay. And now they don’t want me… So, I’m not sure who I am anymore. Okay. Is that better? Okay. And then, is the other side, so then there’s what we call bipolar disorder or manic depressive disorder. So, a manic episode is in some sense the flip of depression, although it’s not necessarily feeling great. People think, “Oh, I’m manic. I’m wonderful. I’m on top of the world.” But many people with bipolar disorder are very irritable. It’s an uncomfortable feeling. They have lots of energy, their thoughts are racing, they’re going very quickly. But it’s often laced with depression, and it’s a very uncomfortable kind of a feeling. So, for mania, you have decreased need for sleep, talk more, talk more fast, your thoughts are racing, you have hard time concentrating. And bipolar disorder is less well-described in NMO, although there are some case reports. So, these are the two major mood disorders that one might think about if you’re having a lot of emotional symptoms.

Dr. Ira Lesser:

Now, the treatment of depression, independent of NMO, so I’m not saying that… So, if you have depressed symptoms as part of NMO, you’re dealing with support groups and stuff we’ll talk about, maybe exactly what’s needed. But if it reaches a higher threshold, you may want to treat the depression independently. And the two major ways we do that are talk therapy, counseling, and medication. Clearly, the most effective and time limited talk therapy for depression is something called cognitive behavior therapy, CBT. Very effective, not everybody knows how to do it, so there’s some specialization in that. But it really makes people look at the way that they’re thinking and maybe help them correct some of the misinterpretations they have about things. So, “I will never get any better.” Well, that’s may or may not be true. It may be that you think that way, but it may be that you can. Or, “I’ll never have any friends.” Well, you have friends… so, it’s looking at the nevers, the always, and trying to help people change their thought patterns. Very, very effective.

Dr. Ira Lesser:

And then, antidepressants, and antidepressants can be quite effective. There’s some controversy that milder depressions don’t necessarily respond to antidepressants. All medications have some side effects. Antidepressants in general are pretty well tolerated. But if you can get by without medication… I prescribe a lot of medication. If you can get by without it, you’re probably better off.

Dr. Ira Lesser:

And then, if there’s significant depression, one really needs to think about, asking people about suicidal thinking. Suicide is on the rise in this country. That’s a whole other talk, but we really need to talk with people who are depressed about, are they having thoughts of hurting themselves? And then, there are specific treatments and specific things we could do to make sure that people are safe.

Dr. Ira Lesser:

Anxiety is also a significant part of NMO. Anxiety about current status, anxiety about the future, as was said, what will happen down the road? Will I be able to work? Will I not be able to work? That’s a significant thing. And there’s different ways of treating anxiety in the moment. There’s things like breathing exercises, which we’ll talk about in a little bit. There’s ways, again, the same kind of cognitive therapy, looking at one’s thoughts. And there are different ways of stress reduction that we’ll talk about in a different slide. Interestingly enough, the medications that we tend to use for anxiety disorders are also the antidepressants, even if somebody is not depressed, and many people who have depression have some anxiety so it’s the same medication actually works in both conditions.

Dr. Ira Lesser:

Okay, CBT, I talked to you a little bit about. So, let’s move on now from illness to wellness. Okay> Because that is really the goal, that despite having what can be a chronic illness or a recurring illness, the goal really is to achieve some degree of wellness. And there’s different dimensions to wellness, and it may be that we can achieve wellness in some areas and other areas are more difficult to achieve.

Dr. Ira Lesser:

So, stress management really ties in with those other things. There’s different ways of stress management. So, one is stress management is managing one’s thoughts, managing one’s negative thinking, managing one’s dysfunctional thoughts. There’s the emotional, there’s a social, there’s a physical, environmental, and so each of these things, you may want to make some kind of adjustments in each of these things to achieve wellness.

Dr. Ira Lesser:

Okay. Everybody game to do a two minute breathing exercise with me? Okay? So, breathing’s easy to do. Okay? You know how to breathe. Okay? There’s no question about breathing. But one of the major, major advantages of taking a few minutes with a certain kind of deep breathing is really, it can reduce tension really quite dramatically. So, I’d like everybody just to sit comfortably, and I want you to take a deep breath in, and maybe close your eyes, hold it for five seconds, and then slowly let it out. Okay? So, breathe in, breathe out. Again. Do it again. Breath in, breathe out. Once more. Breathe in, breathe out.

Dr. Ira Lesser:

Anybody feel anything with that? Okay. So, even that little thing, and this takes some practice, actually. So even doing something five minutes in a busy day, whether you’re home or whether you’re in an office. Try not doing it while you’re driving, but very calming just that breathe… And we use breathing techniques as a treatment of anxiety. That’s one of the major treatments that we have for anxiety disorder.

Dr. Ira Lesser:

Meditation. So, people know how to meditate. There’s different ways of meditating. There’s audio tapes or CDs you could use to do that. There’s something called mindfulness. Now, mindfulness comes out of an Eastern tradition of Zen Buddhism. It has to do also with breathing, and it has to do with trying to clear your mind of any kind of thoughts at the moment. So, a negative thought comes in and you just say, “Okay, I’m not going to deal with that now. I’m just going to stay thinking about my body, thinking about my breathing.” And again, I mean, you can Google this, there are lots of exercises about mindfulness, could be very, very helpful.

Dr. Ira Lesser:

Guided imagery is a technique where you think of a very calming scene, and this may be different for everybody. Some people like to think of being by the ocean and hearing the waves. Some people like to think of being in a forest. Some people think of the, whatever, near water. And you just try to actually visualize this and think about it, and you’d be amazed at how easily you can get into that, and again, stress goes down. The body cannot be relaxed and anxious at the same time. They’re two opposite things. So, if you can learn to relax yourself through any of these techniques, the body just can’t be anxious at that moment. And the more you do that, the more easily it becomes something that you could rely on.

Dr. Ira Lesser:

For those of you who can do some physical activity, yoga, stretching, whether it’s formal yoga or just stretching could be useful. There’s Tai Chi and Qheng which are Asian techniques of body movement. There’s progressive muscle relaxation, where you tense part of your muscles, and then you relax them. And you could do this starting with your feet, all the way up, tense them, and you relax them. And all of these things really help the body just relax.

Dr. Ira Lesser:

And there’s additional things, and this organization is a prime example of having the support of a network of people who understand what you’re going through. So, group support, whether it’s through an NMO support group or any other kind of support group. We need people around us. We need to be able to share with people, and that could be normally helpful for wellness. For some people it’s organized religion or spiritual or religious group. Again, not necessarily for NMO, but if that’s what is calming to you, and if that’s what you feel comfort with, that can be very helpful. And then, addressing the interpersonal conflicts if there are there. There may be marital conflicts, there may be intergenerational conflicts with parents and children, there may be sibling conflicts. All of those things, if they can be attended to, can calm people down. And then, clearly things like exercise, if you’re able to do that and a healthy diet, those all are important things to achieve wellness.

Dr. Ira Lesser:

And there are what we call some complimentary medicine approaches or things like massage, so massage therapy actually is being shown to have some real biological effects. Acupuncture may be useful. And then, there are herbal remedies. Some people don’t like to take traditional Western medicines, they may be more comfortable with other medicines. So, there’s things, Omega fatty acids, folate, and then, although it hasn’t been looked at to my knowledge, things like medical marijuana. Some people with other pain states, and I’m not advocating this, I’m just covering the waterfront, that that may be useful for some people.

Dr. Ira Lesser:

So, what should patients expect and families expect from their caregivers? I think that’s an important thing. I think that you should expect clear and reliable information from your healthcare team. I mean, a number of people said they were misdiagnosed, and that’s not the fault of anybody, it may be that NMO is not as well known to people. But you should expect things, and if you don’t think that it’s on the right track, you should expect to find somebody else. I think people should expect to be validated for their symptoms, so you shouldn’t go and feel that somebody is not listening to you or not taking you seriously. I think that people should expect active treatment for their depression or anxiety if it has reached a level beyond which they’re comfortable with. Certainly, there’s other resources. And then, foundations often provide information which might be useful.

Dr. Ira Lesser:

So, finally, let’s talk a little bit about resilience. Mike [inaudible 00:26:58] gave me this slide. Resilience, never give up. Fall down seven times, get up eight. Okay? So, what are we talking about when we mean resilience? Resilience is our own capacity to overcome adverse events, and adverse events in all of life. It could be a chronic illness, it could be a trauma that somebody had, it could be the death of somebody. Life is full of adverse events. And so, the question is being able to put it into some kind of perspective and adapt to it. Or other people say, it’s like rolling with the punches. So, for a patient with a chronic illness, resilience is the ability to deal with and maybe overcome feelings of grief, sadness, stress. Being resilient does not mean to not experience difficulty or distress. Emotional pain and sadness are part and parcel. It means being able to deal with that but not have that define who you are, to somehow do some of the things we talked about earlier to transcend that.

Dr. Ira Lesser:

Road to resilience, make connections with others in your world, your small world, your family, your support group, your church group, work related people, whatever. Try to avoid seeing a crisis as insurmountable. Most crises are time limited. You can deal with them. Move toward your goals. Take decisive action. Try to take control of things. Don’t be at the mercy of everything around you. You are enough at the mercy of an illness at times, but if you can take charge, you often feel much better. Find meaning, look for opportunities for self-discovery, and nurture yourself. Keep things in perspective, and take care of yourself to the degree possible.

Dr. Ira Lesser:

So, we have just a few more minutes. They gave me the five minute sign a few minutes ago. So, anybody have any kind of thoughts they’d like to share or questions at this point? Yes? Please.

Audience:

I have a question. Could it be possible, I feel like I was [inaudible 00:29:17] could it be possible to slide and then bounce back up out of that?

Dr. Ira Lesser:

Absolutely. Absolutely. So, as you slide, you did what cognitive therapists do. You took a look, you said whatever it was, “It’s not so bad. I could figure it out.” So, absolutely. So, that’s using your own inner strength to do that. And to be vigilant, so if it comes back again, you try the same thing, whatever. So, absolutely that’s a self-healing. And if you could do it yourself, you’re much better off than doing it with somebody like me or a counselor. Yes? Please.

Audience:

Yeah. I’m [inaudible 00:29:58] and I was diagnosed in April of 2014. I don’t know about the rest of you, but I find for myself, if something really stressful, a stressful event happens or big argument or something like that, it really accentuates all my symptoms, my pain, my mobility, my thought processes, and of course my mood. Anybody else?

Dr. Ira Lesser:

Yeah, yeah. Yeah, they’re a major-

Audience:

You’re not alone.

Dr. Ira Lesser:

You’re not alone. And there’s likely to be a biological explanation for it because when we’re upset, it sets off a whole bunch of neurotransmitters in our brain go wild, the immunological system gets involved, and all of that can affect the biological processes. So, it’s not like out of the blue, and what it speaks to is to attempt to calm these down, because these exercises do the exact opposite of upset. You get upset… And Mike Yemen is one of the country’s experts on this kind of stuff. When you stress, all of it happens, so if you decrease the stress, you calm down certain neurons firing in the brain. And then, the pain decreases. So, I think that what you’re describing is absolutely true of everybody. Yes?

Audience:

I have four adult children between my mom needs to be in a nursing home and mom [inaudible 00:31:50]. Is that role reversal thing when [inaudible 00:32:05] one is like where you’re not telling me what’s going on, and then the next minute you’re dumping too much information on them. I’m impatient, and it’s hard to deal with the family sometimes because it’s like you shouldn’t be able to go out and have fun. And how can you go do this but not that?

Dr. Ira Lesser:

Right. Right. Right. No, I think that that’s probably par for the course about people who don’t quite understand. You could try to educate them, but it’s also, it’s not easy seeing one’s mother or one’s son or one’s daughter ill, and people who see loved ones ill often react in different ways. Maybe, “Well, it’s not really that bad, so you should be able to do this,” or maybe, “You’re really that…” And even within your family, some of the children may have different views of that. So, I think the best to do is be honest with it and maybe try to get people together. It’s hard when they’re far flung. And if the children have their own issues with it, then they may need to have somebody to talk with, just to get that kind of sense of what they’re dealing with. Because again, it’s not easy seeing their mom with a chronic illness. Anybody else? Because I think they opened the doors, which means that you… This is the musical chair part. You get to go somewhere else. Okay. Thanks for your attention.

 

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