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Mary Paolone, MS RN, is the program coordinator, nurse coordinator, and mental health specialist at the MDA/ALS Center of Hope at Temple University. With degrees in nursing and counseling psychology, Mary has worked with chronic pain and chronic illness for most of her career. She has supported families impacted by ALS for over 15 years. “I just love them,” she says. “They’re my greatest teachers.”
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Your ALS Guide sat down with Mary for a video interview in August 2022. Below is an abbreviated version of that discussion.
What do you discuss when someone has just been diagnosed?
Managing emotions is a huge area. I often tell people, especially if they've just gotten the diagnosis, that it's really important just to acknowledge that it may be a bit like a rollercoaster for the next few days, weeks, etc. And just to be, if they can, somewhat allowing of themselves and also allowing of one another.
There can be a whole range of varying emotions—including no emotion. It can be shock and denial and can range from anger and confusion to the big questions of, “Why me?” And sadness. The biggest thing that I try to impart to people is just to be allowing of themselves, and to know that these reactions are totally normal.
What about the longer-term adjustment process?
It is a different pace for everyone, depending on our own personalities, our own emotional intelligence, our backgrounds, what we bring to it, and our coping skills.
There's so much happening at one time—all of these physical things that may be in the fire that's in the pan that you have to address, and yet all these background emotions. So to be very cognizant as well, as we move along. It's an adjustment time. For most people, the brain does settle in and grasp that, okay, here we are now.
It all is really just adjusting to the new. I often will tell people that it's not like getting a diagnosis of diabetes, or say, cancer. Not to say that they don't entail changes, but this diagnosis is a continual sense of, okay, I have my brain wrapped around this piece. And wow, I was really prepared for last month.
It's a continual sense of, “Oh, now this is different.” So then the mind and the emotions and the heart have to catch up to that. So it is this process of continual change, reaction, and emotion in response to that grief and sadness, and hopefully coming to some sense of acceptance. And it goes like that.
There's so much happening at one time—all of these physical things that may be in the fire that's in the pan that you have to address, and yet all these background emotions. So to be very cognizant as well, as we move along. It's an adjustment time. For most people, the brain does settle in and grasp that, okay, here we are now.
It all is really just adjusting to the new. I often will tell people that it's not like getting a diagnosis of diabetes, or say, cancer. Not to say that they don't entail changes, but this diagnosis is a continual sense of, okay, I have my brain wrapped around this piece. And wow, I was really prepared for last month.
It's a continual sense of, “Oh, now this is different.” So then the mind and the emotions and the heart have to catch up to that. So it is this process of continual change, reaction, and emotion in response to that grief and sadness, and hopefully coming to some sense of acceptance. And it goes like that.
How do you address depression and anxiety?
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Our emotional and our mental states can so greatly impact our physical wellbeing overall. The two really go hand in hand. So as they're going along the process and the journey of ALS, it's helpful and important to watch out for depression and anxiety. And I didn't even mention the intense amount of fear that can prevail and be present in terms of thinking about the future.
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We practice how to really stay present when planning—helping you hold that sense of what might be coming and helping you plan for the future while doing the best that you can to stay here, to stay present. Because most anxiety is future tense. So if we can bring people here and stay present, that can really help the anxiety.
I talk with caregivers, loved ones, and the people living with ALS about how to identify within themselves and maybe also within their loved one, the things to look for. We know that this is an absolutely emotional time, and there's no way around that.
So the questions really are, how much time is spent in a depressed mood, or anxious thinking or behaving, or fearful thoughts or worrying? Is it for 10 minutes? Maybe it lasts for a couple hours and then you begin to shift out of it. Does the person have the ability? Do they have tools to be able to move themselves out of it? Things like that. There are always questions that I'm assessing as I'm sitting with families.
I talk with caregivers, loved ones, and the people living with ALS about how to identify within themselves and maybe also within their loved one, the things to look for. We know that this is an absolutely emotional time, and there's no way around that.
So the questions really are, how much time is spent in a depressed mood, or anxious thinking or behaving, or fearful thoughts or worrying? Is it for 10 minutes? Maybe it lasts for a couple hours and then you begin to shift out of it. Does the person have the ability? Do they have tools to be able to move themselves out of it? Things like that. There are always questions that I'm assessing as I'm sitting with families.
How can medication help manage depression and anxiety?
It is not a weakness if somebody needs to have medication management for these episodes, for this time during their life when they may be feeling emotional overwhelm. It's incredibly overwhelming. I can't even imagine. Your whole life has shifted. People living with ALS may say to me, "I'm taking so much already. I was never sick. I don't want to take any more medications."
There can be a stigma around it. And not that I'm a medication pusher necessarily, but there's a really good biological and physiological need for it at times. That can just help the dips not be so low.
Our brain chemicals really do a great job being able to balance themselves. But there are times that environment, life stressors, and physical and medical conditions can come into play and just offset that balance or lessen the ability of the brain to really bring those levels back up to speed. And that's a place where some medications can be helpful.
There can be a stigma around it. And not that I'm a medication pusher necessarily, but there's a really good biological and physiological need for it at times. That can just help the dips not be so low.
Our brain chemicals really do a great job being able to balance themselves. But there are times that environment, life stressors, and physical and medical conditions can come into play and just offset that balance or lessen the ability of the brain to really bring those levels back up to speed. And that's a place where some medications can be helpful.
How can counseling be beneficial?
Counseling can be a space just for you where you can say anything and ideally have no judgment. You don't have to feel conscious in any way about anyone else's feelings in terms of what you want to share.
Counselors are trained to pick up on struggles or challenges that you might not even be aware of. And then they can help you strategize. It could be talking about difficult concepts or difficult decisions that you are going to have to face.
In the counseling sessions, it's kind of like the classroom. You can vent, you do whatever you need, you can learn strategies, and then you go back home and you practice. It can help give you more space at home for living.
Not every ALS center offers mental health support. Insurances will typically have mental health support plans within the benefits. There are also organizations that offer free mental health assistance. I always encourage people to use their resources, such as talking to the nurse, physician, or social worker at your ALS clinic so they can help set you up with resources and make sure that every piece of your support network is provided for.
Counselors are trained to pick up on struggles or challenges that you might not even be aware of. And then they can help you strategize. It could be talking about difficult concepts or difficult decisions that you are going to have to face.
In the counseling sessions, it's kind of like the classroom. You can vent, you do whatever you need, you can learn strategies, and then you go back home and you practice. It can help give you more space at home for living.
Not every ALS center offers mental health support. Insurances will typically have mental health support plans within the benefits. There are also organizations that offer free mental health assistance. I always encourage people to use their resources, such as talking to the nurse, physician, or social worker at your ALS clinic so they can help set you up with resources and make sure that every piece of your support network is provided for.
What about healthy communication in relationships?
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Communication is probably the number one tool and strategy to be able to maneuver through this whole journey in a productive way. We need to hopefully understand and accept that there's no right and wrong. Nobody's right. Nobody's wrong. So we can just leave those off the table. Out of the gate, we're already doing okay.
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Every person will experience this in their own unique way, with their own emotions, their own coping skills, their own ways of talking, not talking, asking, not asking, their own ways of emoting, which can be incredibly challenging to maneuver and to figure out and to navigate. So one of the things that I hope to really encourage for couples, loved ones, and family members is just open communication—and preventive communication.
Preventive communication could look like having weekly or monthly family or couple meetings. What's working? What's not working? Not a fault-finding session, not a blaming session, but what's working and what's not working? I would encourage people to start out with what's working. What's working well? What is it that I appreciate that you're doing? Okay, and maybe what's not working so well? What could we shift together here? Hopefully always remembering that we're on the same team. We have the same goal. Neither of us asked for this. Nobody asked for it.
And then the other piece that I see that can be difficult and challenging for certain relationships during these times is to think that it's worse for one than it is for the other. And ultimately, I don't know the answer for that. But what I do know is that when those that I've worked with think that way, it doesn't help them connect with the other person. It sets them apart.
Preventive communication could look like having weekly or monthly family or couple meetings. What's working? What's not working? Not a fault-finding session, not a blaming session, but what's working and what's not working? I would encourage people to start out with what's working. What's working well? What is it that I appreciate that you're doing? Okay, and maybe what's not working so well? What could we shift together here? Hopefully always remembering that we're on the same team. We have the same goal. Neither of us asked for this. Nobody asked for it.
And then the other piece that I see that can be difficult and challenging for certain relationships during these times is to think that it's worse for one than it is for the other. And ultimately, I don't know the answer for that. But what I do know is that when those that I've worked with think that way, it doesn't help them connect with the other person. It sets them apart.
What other coping strategies do you suggest?
Find things to laugh about. Laugh a lot. If you can, laugh a lot more than you ever have. Really laugh. Laugh at yourselves. Put on stupid movies that make you laugh. I don't care what makes you laugh, but laugh. There is enough with ALS that is doom and gloom. There's just a lot of it. It's everywhere. It's caked with it. So find things, if you can. And it may sound cliché, but we need to bring up that balance of joy and laughter. Where are those things?
So I really try to focus on that with people. And I would encourage anyone listening to this to find those moments of joy, and a lot of them—a lot more than normal.
So I really try to focus on that with people. And I would encourage anyone listening to this to find those moments of joy, and a lot of them—a lot more than normal.
How can people feel less isolated and more connected?
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We are social beings and ALS has a tendency to really narrow down our circle—for various reasons. Maybe we can't get out of the house, it's not as easy to ambulate, or we feel self-conscious because we might be drooling or we can't speak as well.
So now we're not involved in conversations as much and people are talking faster than we are, and we can't really interject. All those things are incredibly valid. It’s really important to be connected to a clinic and talk with your clinic team about ways to stay engaged. |
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Of course, we have to be mindful about depression, too. Emotions, depression, and anxiety can isolate as well. One of the hallmark signs to watch for is if somebody's becoming more isolated.
What remains the number one priority for most people is the sense of connection. It's the time that they spend with people, as long as these are uplifting, positive connections. It improves our moods. It raises our dopamine levels. It raises our serotonin levels. It raises our endorphins.
Get out in nature. If you can't get out of your house, just sit in front of the window and look outside. Maybe open the window and breathe the air. Just know that you're connected to something outside, something besides just what's around you.
And then talk to your team about ways to be able to stay connected, because there's all sorts of technology that can help you do that. And what people can we get together to help you get outside, to help you stay connected? Who can we bring to you?
This is such an important piece of mental health—for all of us. Stay connected. Please find that time to take care of yourself. Self-care is no joke, whether you are living with ALS or caring for someone.
What remains the number one priority for most people is the sense of connection. It's the time that they spend with people, as long as these are uplifting, positive connections. It improves our moods. It raises our dopamine levels. It raises our serotonin levels. It raises our endorphins.
Get out in nature. If you can't get out of your house, just sit in front of the window and look outside. Maybe open the window and breathe the air. Just know that you're connected to something outside, something besides just what's around you.
And then talk to your team about ways to be able to stay connected, because there's all sorts of technology that can help you do that. And what people can we get together to help you get outside, to help you stay connected? Who can we bring to you?
This is such an important piece of mental health—for all of us. Stay connected. Please find that time to take care of yourself. Self-care is no joke, whether you are living with ALS or caring for someone.
Join Mary's Virtual Support GroupsOnce a month, Mary hosts virtual support groups for ALS caregivers, people living with PLS, and those who have lost a loved one in the past two years. Learn more.
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