Caregiving Though GBS with Cindy Washburn

He starts with a lisp. Then he can’t swallow. Then he can’t stand. Cindy Washburn joins us to share the caregiver perspective behind her husband Miles’ sudden Guillain-Barre syndrome (GBS) crisis, and what it’s like to watch the person you love lose basic functions while you fight fear, push for answers, and try to stay steady in front of them.

We talk through the emotional whiplash of going from retirement plans to emergency rooms, including what happened when they were initially sent home, how fast symptoms progressed, and the moments that broke Cindy’s heart, like the feeding tube attempt and the looming risk of a ventilator. Along the way, she names something every caregiver recognizes: the worst stress is the unknown, and it can swallow your whole nervous system if you don’t find support.

We also get practical about Guillain-Barre syndrome awareness and advocacy. Cindy explains what they learned about GBS as an autoimmune condition, why tests like a spinal tap can matter, and how IVIG treatment and plasma donations can play a lifesaving role. We zoom out to the long tail of recovery too: fatigue, nerve pain, anxiety, and the fear of it coming back, plus how a spouse can respond with empathy without losing their own footing.

If you’re a Christian caregiver, a chronic illness patient, or someone trying to understand how marriage changes after a medical crisis, this conversation offers honesty, faith, and tools you can use right away. Subscribe, share this with a friend who needs encouragement, and leave a review so more caregivers can find these stories.

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Transcript

Welcome And Why Caregivers Matter

L. A. Sprague 0:01

I'm your Jesus loving and potty host, Ellie Sprague. Welcome to Christians with Chronic Illnesses. Cindy Washburn, thanks so much for being on Christians with Chronic Illnesses. We really appreciate it. Cindy is for the audience listening. So we interviewed Miles Washburn, Miles for GBS, who has Guillain Baret syndrome. And he's doing a fundraiser riding up a mountain fundraising for current patients with GBS as well. And I thought that it would be really cool to hear a caretaker's perspective on the show. So if you're listening, I hope that you are encouraged. And also if you are a caretaker and feel like you need a place to share your side of the story, or if you and the person you caretake would love to be on the show together, I'd be more than happy to talk about giving you guys a space to chat about that. But I'm super happy to have you today, Cindy. I think that you and Miles are incredible. And when I had asked Miles if there's anyone he thought that would be, you know, encouraged being on the show, he was like, You have to have my wife. He immediately was like, I'm pulling her right now.

SPEAKER_01 1:22

That's very sweet.

The Interruption And A Bible Parallel

L. A. Sprague 1:25

So, Cindy, why don't you tell us just a little bit about yourself?

SPEAKER_02 1:30

Well, Miles and I have been married now nine years, and you know, everything is, I'm just gonna jump right in with this. Everything, you know, is going great. And he finally decided to retire. So, you know, you start making all these plans and trips and things like that that you want to do. And, you know, that's the life, the road that you're going down. And then all of a sudden, you have what I call an interruption, you know. I think back to Jarius in the Bible, where he went to hear Jesus preach. You know, he's a leader in the synagogue, and he's standing there to hear Jesus preach, and someone from home comes to him and says, Your daughter is dying. And so he's, you know, just very upset and scared. And so he goes, makes his way through this huge crowd to get to Jesus, and he falls at Jesus' feet and said, Please come heal my daughter. Jesus was like, Okay, you have the faith. So absolutely. So they start going through this huge crowd, and then all of a sudden, Jesus stops. Someone touched his cloak, you know, which is the woman that led for 12 years. So Jerry has had this interruption going on in his life, and he's just like, what, what, you know, which is what I was doing. What, what's going on, you know? And that is what happened with us. All of a sudden, you're seeing, you know, a loved one who is is, you know, having this, these symptoms where he can't move, where he can't swallow. And the stress that you have, you know, when you don't know the stress level, it is just a whole new level because you don't know what's going on. So, you know, we start this whole process of going down this this road trying to figure out what was going on. And so going back, you know, to the story of Jarius, you know, he's just like, Jesus, what are you doing? What what what have why, you know, pretty much have you interrupted going to my house to heal my daughter? You know, and I kind of felt myself saying, God, what's going on here? You know, we we were going to do this, we were going to do that, you know. And then it was like God says, I know what's going on. I'm ahead of you. I none of this is outside of my control. Just rely on me, trust me, you know, which you know, in the end with Gary's story, you know, his daughter was she died, and Jesus brought her back to life. So, with me, with this story uh with about Miles, where we are today and what we have been through has just been amazing, and how we have just relied on God to get to where we are today. So, all of that being said, you know, as a caregiver, the stress and the anxiety that you have, in addition to what your spouse or your loved one is going through, is just over the top. Yeah.

L. A. Sprague 5:10

Sounds like it. So I would love you to expand more on. So you're talking about how you relate to Jarius, how his life was well well, probably already interrupted with his daughter, you know, being sick and dying. But then also, you know, with Jesus stopping and then her actually passing, and then Jesus rising her. Wild story.

Retirement Dreams Before GBS

L. A. Sprague 5:31

But I would love to hear a little bit more about that beginning of before it was interrupted. What was you mentioned that, you know, you were asking God like what's happening? That there was stuff we were wanting to do. What was you and Miles's life and plans before he got sick?

SPEAKER_02 5:49

Well, travel. We were wanting to do, you know, a little bit more traveling than what we had done. He, we have a mountain house, and so we were looking forward to, you know, spending time up more time up there, him fishing and you know, me hiking. So just a lot more time doing things that we've always wanted to do because he and I both have worked all of our lives. And so we finally get to this point of where you're retiring and you're going to maybe get to enjoy life, sleep in a little bit later, you know, and all those fun things that you don't get to do when you're working. And so that's that's where we were, you know, at the time when this, you know, GBS hit him, just spending more time together. And, you know, it just it just threw us for a loop when this hit.

L. A. Sprague 6:49

Yeah.

SPEAKER_02 6:49

Because it really did disrupt our lives. And it still has to a certain point.

L. A. Sprague 6:57

Yeah, so when what was the time frame between when Miles retired and between the GBS hitting?

SPEAKER_02 7:06

If I'm not mistaken, I think he retired in 24. Okay. And then February of 25 is when he got hit with GBS. Wow. Yes.

L. A. Sprague 7:20

When are you retired as well? I am. Okay. And when did you retire?

SPEAKER_02 7:26

I had retired before Miles, so I've been retired now four years. Okay, gotcha. Yeah.

L. A. Sprague 7:32

So you were that's such a unique struggle because you are finally at the point of you were working, you're retired, and Miles is retiring. You have dreams. All right, we're gonna travel, we're gonna finally like it's almost like it's that whole kind of expectation that we have, I think, especially as Americans, I don't know how it is other places, but we work when we're young, you know, and when, you know, when we really can, for the hope that someday we'll get to finally rest and do what we really enjoy. So you're really looking forward to that. And just maybe a year goes by and all of a sudden you're hit with, well, Miles is hit with a chronic illness, and you are hit with having to kind of take a caretaker role. So that's a very difficult, it sounds very difficult to to navigate that. Disappointing.

SPEAKER_02 8:30

Yes. Well, you know, and the difficult part though was not knowing what was going on. Like I said, you know, that's where your stress goes to a whole, you know, different level. But once he was diagnosed, then you're like, okay, we've got something we can work with now. So let's work with what we know at this point.

L. A. Sprague 8:57

Right. Yeah.

Early Symptoms And The First ER Visit

L. A. Sprague 8:58

So I know that in Miles' interview, he talks about that it happened pretty quickly, that he was pretty healthy until one day, and it seems like the GPS just kind of hit him pretty hard. So, in your perspective, was that the same perspective that one day it kind of just hit, or did you see signs leading up to that?

SPEAKER_02 9:39

Well, he had actually gone to our mountain house because we had had a tree that had fallen over in the driveway because of snow and ice. So he had gone up there and he called me on the way home and said, I have a lisp. So when he was talking, he had a lisp and he's like, I don't know, you know, what's going on. He said, you know, I think I just need to come home because he was going to spend the night. So, you know, he came home and I heard him, you know, when he was trying to talk. And I'm like, you need to get to your doctor, you know, and see what's going on. But you really don't think much about it at that point because it's nothing that's really, I guess, catastrophic at that point. And then after having come back from the doctor, they were like, Well, you may have been allergic to something or whatever. So we just kind of let it go. But then it got to where he's like, we were trying to eat dinner. And he's like, I can't swallow. I'm like, what do you mean you can't swallow? You know, and he said, I can't swallow. Okay, okay, we're going to the ER then. And that's where it all started at that point, you know, all the stress and emotions and everything that kick in as a caregiver, you know, of course, he's already stripped.

SPEAKER_01 11:12

Right.

SPEAKER_02 11:12

You know, and you know, just you know, having all kinds of issues. And you as the the wife, the spouse, you're getting anxious. And you know, and that's not going to help them, but you can't help it, you know. And so then is when I have to look back, like Psalms 56, 3, where it says, when I was afraid, I put my trust in you. And that's what I had to do in my mind, you know, because at first you're you're just you don't know what to do. And that's where in my mind I had to say, okay, God, you know what's going on, you know the outcome of this. So I'm gonna put my trust and faith in you. I'm going to rely on you. So all during this process, you know, when he's trying to be all anxious and stuff, you're trying to say, you know, it's okay. It's probably not anything. It'll be fine. We'll get through this. You know, God's got this. You know, God's not gonna let us retire and then something happen. And, you know, and so, you know, at the ER finally, and the doctor that was there obviously had not seen GBS before. And he just told Miles, you can swallow that there's no way you're not swallowing. You're swallowing, you're fine. And I said, Listen, if my husband tells you that he cannot swallow, he cannot swallow. Yeah. Well, maybe he's just having an allergic reaction, you know, blah, blah, blah, blah, blah. So they sent us home. Wow. Yes. So you can imagine where your anxiety and stress level is at this point. But imagine my husband's. It's over the top. And so we had been at the ER all day. And so I give out. So I said, you know what, I'm just gonna go lay down for just a moment, just to rest my eyes. But here's here's your phone. I've got mine. If you need me, you call me. I hadn't laid down two minutes, I guess. And he called me. So I jumped up, ran into the living room, and was like, what's going on? He said, Well, I really, you know, could go to the restroom. I said, Okay. He couldn't get out of the chair though. He could not get up out of the chair he was sitting in. Wow. So, you know, I'm trying to help him by pulling on him to get him up. Well, he had no strength, hardly in his legs, and he hit the floor on his knees. So, you know, of course, here goes our stress levels, just you know, skyrocketing. And so we ended up getting a hard bottomed straight back chair for him to pull himself up and me helping as well. I said, right then, we're going back to the ER. He said, Well, pack me a bag because I have a feeling I won't be coming back home. So that's when we ended up back at the ER and things just progressively got worse at that point.

L. A. Sprague 14:42

Yeah. How did they get worse?

SPEAKER_02 14:46

He got where he started getting numbness

Rapid Decline And Hospital Crisis

SPEAKER_02 14:50

in his arms and his legs. We ended up putting him in a wheelchair. And just we could he just felt like you know, things were just getting worse by the moment. So finally they got him back into one of the ER rooms. And this time we had the chief of staff that was there as the doctor. And he looked at my husband and he said, From what I'm seeing, it sounds like you've had a stroke. So they take him out, you know, to go and do, you know, what all they the tests they needed to do. And I just sat there in that ER room praying, just praying, you know, God, you've got this. I know you do, you've got this. And you can't help, but as a human, to be emotional still, even though you know that God's God's got it 100%. The emotions just take over, and you know, there's nothing you can do about it. You pray for, you know, calmness and peace and all of you know, all of that, and God gives you that, and you just you you deal with it and the anxiety kind of together. I know that doesn't sound you know right, but it it's just your human nature dealing with what you know God is doing in your life in this situation.

L. A. Sprague 16:26

Yeah, well, even Jesus had emotions.

SPEAKER_02 16:29

Yes, yes, he did. Absolutely, he did. And you know, and I think you know, you're just like I said, it's just the anxiety just takes over.

unknown 16:41

Yeah.

SPEAKER_02 16:41

And then seeing my husband being so scared, he looked at me at one point and he said, I don't think I'm coming home. What do you think that does to your spouse? You know, whenever you hear your other half say that, you know, this is this is a man that God brought into my life. He literally brought Miles into my life, you know, was not looking for anyone. You know, I'd had a marriage prior to to Miles that unfortunately did not work out. And I said, you know, that's it. Uh I'm done. I, you know, I can live on my own. I'm fine, you know. But and I told God, I said, you know what? If there is anybody out there, you're gonna have to bring them to me because I am not looking. So I know God brought miles into my life. And to think that he thought that he would not be coming home and not survive this just broke my heart in two, you know. But again, my faith is strong, and I knew that God was going to handle it. I knew he was one way or another, God was going to handle it for both of us, you know, and just like with Jarius again, he healed Miles, you know, he has well, he's he's always going to have GBS, but at least now he does not have any of the symptoms, you know, that he did initially.

L. A. Sprague 18:25

Yeah, thank God.

SPEAKER_02 18:26

Yes, absolutely.

L. A. Sprague 18:28

So, what were some of your thoughts and feelings as you progressively see Miles getting worse? You know, first you see him have a lisp and then not swallowing, and then he's having numb limbs, and then he's at the point where he's telling you, I don't think I'm gonna come home. What are some of your thoughts and emotions that were going through you at that time?

SPEAKER_02 18:52

Oh, well, like I said, I mean, it was just so stressful, the anxiety, the the you know, uncontrollable tears, you know, and you're again, you're trying to be strong, you know, for yourself. Yeah, you know, you're trying not to to cry in front of them. You're trying, you know, not to be stressed. You know, I'm just constantly saying, honey, it's gonna be okay. God's got this. It's gonna be okay. He didn't put us together for something like this to happen right now. I just know he didn't, you know. But inside, my insides are just turning, you know, and I'm just praying, God, you know, what is going on? What, you know, what what can I do? What can I say to my husband where, you know, will help calm him, you know, down, you know, and he's just, you know, uh so anxious and just thinking, I'm not coming home, you know, I don't know what's going on, you know, all these things. And I'm trying to just be humble and kind and just, you know, it's gonna be okay, sweetheart. God's got this. Just keep praying, you know, God's gonna get us through this. And he did.

L. A. Sprague 20:07

At any point, did you kind of doubt what you were saying, or did you like fully believe it the whole time?

SPEAKER_02 20:15

I fully believed it. Wow. I really did. I fully believed it, even though I saw what Miles was going through. I just knew that, like I mean, like I said, I knew God had put us together. And I just knew that God was gonna pull him through this. But I didn't know exactly how the outcome would be, whether there would be paralysis, permanent paralysis, whether there would be, you know, any type of, you know, symptom that he would carry forever, that maybe he couldn't, maybe his speech, or he couldn't swallow. I mean, him not swallowing was the worst thing because you don't realize how many times you swallow a day or in a minute. I mean, it's it's just something that we do that we don't pay any attention to. And that was scary because at first when we got to the ER, he just had a handful of paper towels that he was, you know, spitting in because he couldn't he couldn't swallow. And we were scared that he might aspirate or choke or you know, or anything. We didn't know what was going on. And then eventually in the ER, they gave him one of those little suction things like you have at the dentist office, you know, where they you're using when they're cleaning your teeth or, you know, whatever. He had one of those and just kept, you know, kept the spit at bay by using, you know, that suction tube. And he had that until almost maybe the two days, well, maybe you know, maybe a day before we left the hospital. He was using that the whole time he was in the hospital. I mean, he couldn't. Eat. He didn't eat for six days. You know, he couldn't swallow, so he couldn't eat. So eventually they did have to put in a feeding tube so that he would get some nourishment. That day when they did the feeding tube is when I walked out of the room when they were doing it, and I literally broke down at that point. That that was because they couldn't get it to go in and it was hurting him. And they were telling him to swallow. They want you to swallow to get it in. He's like, that's why I'm here. I can't swallow. So that was just that that was just terrorizing to me. And you know, him being in pain. And and I like I said, I f I had to leave and I just found a little corner and I just wrote down. And it wasn't because of my lack of faith in what God was doing. It was just seeing my husband, you know.

L. A. Sprague 23:18

In pain.

SPEAKER_02 23:19

Yes, hurting. That was the reason for that.

L. A. Sprague 23:23

Yeah, absolutely.

SPEAKER_02 23:25

Yeah.

L. A. Sprague 23:26

That makes total sense. I think it would be probably more concerning if you weren't feeling emotional about that.

SPEAKER_02 23:33

Yes.

L. A. Sprague 23:34

Honestly.

SPEAKER_02 23:36

Oh my goodness. Yes, it was uh it was a time, you know. But but you know, in John, God God doesn't promise us to be free from you know pain and things like that. I mean, you know, he tells us to expect tribulation, you know, and so that's you know, kind of where I was with this, you know, okay, God, again, you know, I was afraid, but I put my trust in you.

unknown 24:04

Yeah.

L. A. Sprague 24:05

So in that moment when you broke down because you're experiencing the pain of the person that you love the most on this planet, did you reach out to anyone for help or were you just praying, or were you just kind of trying to like control your physical reaction? Yeah, what did that look like in that moment?

SPEAKER_02 24:28

When I found my little corner and just broke down, you know, I just started praying. You know, Lord, please let them be able to get that feeding tube in. And please, you know, not let it hurt. Well, you know, they one tried to put it in and then they took it back out because it got stuck. And then another doctor came in and, you know, he finally got it in, but it was still difficult even the second time. But, you know, for me, it was just praying that they would get it done so that he would not still, you know, be hurting. And, you know, at that point, his brother was um keeping him up to date on what is going on. And so, you know, when I could talk, I called him. And as soon as he answered the phone, I started again. You know, I couldn't even talk to him because I was so emotional. And he, you know, he was like, Do you want me to come? Do you want me to come? Because he lives up, you know, in Massachusetts. And I was like, no, no, because you know, my brother-in-law works at the hospital. So he was the one that was keeping us kind of you know informed of things. I mean, he was amazing. It was amazing to have him there. And then finally, you know, after I hung up with him and got myself together, went back around to where he was, and they had finally gotten the feeding tube in for him at that point. That was probably the hardest thing for me after the ER. Once they got him into ICU, his breathing, they had to monitor his breathing because they were going to put him on a ventilator. And he had to blow in this little apparatus to get to a certain point. And if he could keep blowing to that point, then they would not intubate him. And by the grace of God, he was able to keep doing that, and he did not have to be intubated, which you know was our fear that that was going to happen. What is that? That is where they put the tube in him and it it reads for you, is what it does. Yeah. And because his breathing had become shallow, because everything is being attacked and everything has stopped, you know, working, so to speak. You know, he can't swallow, he couldn't even push the remote on the TV, he couldn't lift up his arms, his neck when they would try and do the spinal tap and stuff and laying back, they had to hold his head to lay him down because everything had started, you know, paralysis was setting in, you know, paralysis was setting in. And so that, you know, all of those things, you know, combined and with him, his breathing not being as strong as it could be, that was when they were saying, you know, we're gonna, you know, have to, you know, intubate you, you know, and put you on, you know, a ventilator. Ventilator, yes. Thank you. You know, because we thought they were gonna have to do that. But like I said, you know, we just kept praying, Lord, please, every time he would blow that little apparatus, please, Lord, let him, you know, keep, you know, keep it up, keep it up. And he did. And again, we give God the credit for that as well.

L. A. Sprague 27:54

So it sounds like every small moment, every small thing that they had to do to help him to check on him,

Prayer Through Every Medical Decision

L. A. Sprague 28:01

you were in constant prayer of God, like help him be able to pass this test, help him help them to be able to put this, you know, in him peace, like as peacefully as possible. Yes, yeah. So you were for you, prayer was a huge part of being there for him.

SPEAKER_02 28:22

Absolutely. And I got on the phone that night because I came home that night because we had two dogs, and I did not spend the night in the hospital. I was going to, but Miles was like, no, you need to go catch the dogs and you let the dogs out and all of that. And so I did, but when I came home, I called every friend, every person that I could think of, all my prayer warriors to start praying. And LA, I know that is why my husband was able to walk out of that hospital like he did. We had prayer warriors everywhere, out of state, everywhere, praying for my husband. And there's no doubt in my mind that that is what, you know, what was there because God is greater than the unknown and greater than what we are facing. He already knows the outcome of how it's going to be. So I think that was where I had my peace, what little bit I had, was that knowing, you know, that God's got this, no matter what. I know that God has got this in one way or another. His will will be done. It may not be ours, but it's going to be his will. And there was where my faith was and my trust was, was relying on him through it all.

unknown 29:51

Yeah.

L. A. Sprague 29:52

And Miles seems to be like kind of on that same page as you and also very open about his story. So I presume he probably was thankful that you were sending out prayer requests to a lot of people. Is that right?

SPEAKER_02 30:07

Oh, absolutely. Yes, he was. And he was even, you know, sending some from his phone after he got where he could start using the phone. He was still, he had was in ICU for, I think, four, four days or five days, and then they moved him to the step-down unit. So at that point, he could start using the phone a little bit because he had had the IV IG plasma, which is what started, you know, him getting better. And so when he could start using his phone, he would, you know, start telling people, pray, pray, you know, pray that I, you know, can get over this, pray that, you know, this will, you know, this IV IG plasma will start working more so. And so he was definitely doing the same thing. And he and I were praying constantly together. You know, I would not leave that room that we did not pray together, that you know, we know Lord, you've got this. We know you do. You know, it was still very, very scary. And I think when you see a loved one with a sudden illness like this, I mean, the emotional just, you know, stress of it, the helplessness that you feel is is just beyond anything that you can ever think that you will have to go through. And I know, you know, there are a lot of caregivers out there that have to deal with a whole lot more than what I've had to deal with, you know, and I think having God in your life is is the most important thing that you can do during something like this, you know, is knowing that you have a personal relationship with God and that God's will's gonna be done. And sometimes it may, as we know, it may not be the outcome that we want. But God knows what's best for all of us. And I think, you know, just having my faith in God, you know, having grown up with a grandmother that was a godly woman, and my mom, who is a godly woman, and raised my sisters and I, you know, to have a personal relationship with God. I mean, I thank them, you know, both of them for that. And, you know, as and this going through this, I think has just made my faith even stronger. That if you believe and you trust and you rely on God, that He is going to hear your prayers. I am a firm believer in prayer.

L. A. Sprague 33:00

Thank you for your perspective on that. Well, I'm really glad to hear that you and Miles are on the same page when it comes to prayer and also with like, you know, his openness to other people about his situation. I think for you know, caretakers and patients listening, at least at least for me, like a patient's perspective, it's so important for the caretaker and the patient to be on the same, you know, kind of wavelength regarding, you know, what information are we sharing, to who are we sharing it with, how are we feeling about asking for prayer and things like that. Because I know it can be like I have a relative who loves to share prayer requests and such, and that's so appreciated because you know, for those two of us who believe in prayer, that's very that's that's very appreciated. On the other hand, though, there are plenty of Christians who believe in prayer who are more private people, and so to them it can feel uncomfortable, you know, having so many, you know, whether it's like social media posts or text sent out, and it can almost feel like an invasion of privacy. So I'm so happy to hear that for you and Miles, you're on the same page, and that that was able to be something that didn't bring any point of tension or stress for you guys. And so I love that. And I highly encourage anybody listening, you know, if you're I don't know, a spouse or even a caretaker or whatever, just ask the person who you're you know caretaking for what is their preference, you know. Do they prefer being more private? Are they okay with being an open book? Just see where they're at and and pray for them and trust that God is is hearing you, you know, and hearing the integrity of you respecting their space as well. So I love that you guys had that, you know, figured out and we're on the same page already. So that's awesome. And I mean, and thanks for everybody who prayed for you guys in that season for real. Absolutely, absolutely. Um so when you were in the hospital with Miles, was there at any point? I know that you were talking about that you

Living With Fear Of A Relapse

L. A. Sprague 35:15

had a lot of faith that you know God had a good plan for you guys, and that's awesome. Was there any point where you know, when they were having to help feed Miles and things like that, was there at any point that you were wondering, is this going to be our life from now on?

SPEAKER_02 35:35

Absolutely, absolutely, because like I said, the the unknown is the worst kind of fear and the worst kind of stress, you know? Yes. Um, like I said, once you know, then you you're like, okay, well, we can work with that. But when you don't know, that's that's the fear, not knowing what's going on, not knowing if the IVIG plasma is gonna work. Just the fear of, okay, is this something that we're gonna have to go to rehab for? Because a lot of patients do. They don't come home, they go straight to rehab or somewhere like that. You know, speech therapy. Did were we gonna have to do speech therapy? I mean, all these things, you know, going through your mind. But you know, when you love someone, whatever you have to do for that person, you do. And I just, you know, resolve to that fact that whatever I have to do for him, I will do with God's help.

L. A. Sprague 36:44

Right. Yeah. Well, that's a perfect caveat because I would love to hear how your guys' lives are now. So, of course, with Miles' story, and again, for those of you listening, we interviewed Miles before. We highly recommend you go listen to his episode Miles for GPS. It was great, he's awesome. But I would love to hear how your guys' lives have kind of changed and adjusted since the initial onset of GBS, because I know from your testimony and his as well that he's doing so much better, but he still has, you know, fatigue, and as you mentioned earlier, maybe a little bit of anxiety. And he also mentioned like GBS mouth. Sometimes he can't quite like like his mouth can't quite formulate what he's trying to say. So I would love for you to tell us on a day-to-day basis, what's your guys' life like now? Has it changed much since before GBS?

SPEAKER_02 37:46

Well, I'm going to revert back real quick to Jarius, where his daughter, you know, lived. And for me, with our interruption with the GBS, we came out on the other side too. You know, we've come out where Miles walked out of that hospital with just a cane. You know, he could have had he could have come out in a wheelchair. He could have had to go to rehab, but he didn't. The doctor said he was the poster child for recovery of GBS. And again, we know why that is, because of all the prayers. But our life day to day now, you know, GBS not only affects the physical health side of it, it also affects psychologically. There is still anxiety, fatigue, nerve pain. But I think the hardest thing to cope with that Miles deals with is the fear of it coming back, the fear of it happening again. So a lot of times when he's having that fear, that's where we have to trust in God that it won't come back again. But we know that if it does, then there will be a reason for it. You know, God will have a reason for it because I feel like that all of this has happened so that it strengthens our faith and it is enables us to tell others what happened and why we were of where we are today. Now, on a day-to-day basis with Miles, it's kind of like Cracker Jacks. Sometimes you don't know what you're gonna get, meaning that he could wake up with anxiety and just you know, just his nerves, you know, he's just very anxious that day. Or he could wake up with that sense of fear, and you know, he he talks about it. And so my job is to just comfort him and say, I understand, but we're going to believe that this is not gonna happen again. But I think that is the biggest thing from day to day with him, is the fear of it coming back. He does have nerve pain certain days, and he feels like that he can't ride, you know, bicycle that day. And, you know, so he may like not to ride that day. But again, it's not knowing each day how he is going to feel his emotions, I guess. His emotions are probably the biggest change that I see since he's had GBS.

L. A. Sprague 40:52

Yeah. So, how do you balance in your responses in those moments? Because as you said, you tell him I understand, but we're going to believe for the best. How do you balance both having that empathy and meeting him where he is in that fear and anxiety, but then also steering him towards a more positive outlook?

SPEAKER_02 41:16

Yeah, sometimes it's difficult, you know, because it can almost be like a repetitious thing that where you're constantly, you know, having to say, you know, we're gonna believe that it's not gonna come back, or, you know, you're fine, you're fine, honey, everything is good today. Why don't we do so-and-so, so and so? You know, let's go outside, let's go to the grocery store, anything to try and get his mind off of it. So it's constantly for me trying to still be that humble and kind caregiver, trying not to sit there and think, you know, oh, here we go. We're we're gonna start with the fear thing today, you know, or are we gonna have the anxiety today? What is it that I may have to deal with? But mine is nothing compared to what he deals with. So, and that's how I put it into perspective. You know, I put it into, okay, what if you were in his shoes? How would you want someone to respond to you? And that's how I try and deal with it every day, is just to be, okay, I want to be the spouse that I would want if I were in his shoes.

unknown 42:48

Right.

L. A. Sprague 42:49

Yeah. I love that. I love you have putting on those lenses of trying to see through his point of view. That's very selfless and a very beautiful thing. So we've talked quite a bit about how you help Miles and how he's dealt with this process and kind of what it was like for you in the hospital. I would love to hear more. Hold on, I gotta catch my breath. What's possible up and down, your heart rates like blowing up. Um but I would love to hear more about just the reality that you're human, you know, you're you're his caretaker, but you're human, and like you express sometimes it's difficult because in reassurance with his emotions, it can feel repetitive, and with the every day is so unexpected, you don't know you know how he's gonna be that day. Yeah, I'm I'm just curious how how has all this impacted you since the change in on to FSGBS? And I would also love to hear more about how you cope with that change. And maybe if you guys, you know, have I'm not sure if you guys have any boundaries set. Like I'm not sure if there's like days that maybe he feels like he needs something from you and you're like, listen, I can't reassure you today. Or I don't know if there's like, like, I know that, you know, you can't, you know, you're kind of in the chair most of today. I understand that, but I need some alone time. I'm not sure what that looks like. But I would just love to hear how you take care of yourself as the caretaker.

SPEAKER_02 44:40

Well, I think my running helps. I start my morning, you know, running. Uh, it gives me a

Caregiver Routines And Self-Care

SPEAKER_02 44:47

lot of time to be in constant prayer with God and to listen to sermons that I may want to listen to or speakers or whatever. And I think that sets that helps set my mood a lot of times. Now, some mornings, if I've had a bad night's sleep as well, and he's just like, you know, I'm just gonna sit in the chair today. You know, part of me wants to say, but I've got so much I need to do today. I thought we would do this and I thought we would do that, but I don't say it. You know, I'm like, okay, if that's what you need to do, then that's fine. But I'm still going to do the things that, you know, I had planned to do today. We used to do a lot of walking with the dogs and hiking with the dogs. Well, we don't do that much anymore because though this um his cycling is taking up a lot of his time because he can be gone, you know, three to four hours during the middle of the day. He will only ride during the day when it's warm. He can't handle the cold anymore. And so he rides once it starts warming up. So that is almost like in the middle of the day. So by the time he gets back and he showers and all of that, it's the afternoon. And so then it's like, okay, well, I have to start dinner now, you know? So it's like my day is I stay at home taking care of the dogs, you know, which I can leave them, you know, for a while to go and go to the grocery store or whatever. But, you know, I feel bad because they're in the house all day and not getting their exercise like they did before. And so I try and take them on walks, try and get them out and let them play. And then, like I said, by the time he gets back, it's time for me to start dinner, you know. So, you know, it's just it's just a juggling act that I do more so now than I guess I did before, because before, you know, we would just get out and go and do whatever, you know. But if he's having a bad day and he just wants to sit in his chair, then okay, that's fine. That that's what we'll do. I never get upset with him about that because again, as I said before, you know, I want to be the spouse that I would want if I were in his shoes, you know. So, you know, my day-to-day things, you know, maybe have changed some, but not not a whole lot. They really haven't. One thing that I have noticed is that he was always so jovial, just such a jovial, happy go person, you know. And I have noticed that some of that, he's still, he's still mild, he's still, you know, jovial. But I have noticed that it's not as much, maybe, as it used to be. And I think, you know, a lot of it is from you know, the stress and the fear of GBS coming back, you know, and then when he gets home from these long bicycle rides, I know he's tired as well. So there are, you know, factors that are playing into that. But that is one thing I think that I really have noticed more so with this.

L. A. Sprague 48:25

Yeah. So kind of some unpredictability. And I want to thank you so much for yeah, just you know, kind of admitting the human, the humanness and the having to adjust day to day with, oh, okay, you have to be in the chair today. So maybe that means that something we were planning on doing together or chores we were planning on getting done together, whatever. Now I'm kind of gonna have to do solo. And I really appreciate you just talking about, yeah, just I think just the humanness of even though it's not his fault, of course, and of course he's not being, you know, intentionally trying to get out of things, there's there's some disappointment in that, you know. And I'm sure there's some grief and sadness in watching too, some of feeling, you know, as if like maybe if his light has faded. And as you said, like, you know, you're trying to be the spouse that you can be for him. So you don't, you know, you don't fault him for that, you're not mad at him for that. But it's okay to grieve some of those things that you didn't used to have to to grieve, you know. Right, that's that's all right. Yeah, I I really appreciate your your honesty with that, and also your your resilient love and you know, loving Miles through all of this, and your compassionate heart that's very Christ-like, I think, to instead of immediately, you know, maybe saying like, but I was wanting to do this today or whatever, instead you you take the selfless road and just choose to trust him and choose to give him that, you know, time and space that he needs.

SPEAKER_02 50:08

That is true, you know, and who knows? I mean, down the road when he has not had GBS to come back, that maybe, you know, he'll he'll his jovialness will, you know, come back a little more. And maybe the nerve pain that he has will eventually, you know, slowly start, you know, going away a little bit, you know. So these are things that we're hopeful for, that we hope that down the road, you know, the nerve pain will lessen some, the fatigue will lessen as well, you know, but you never know. You never know with GBS because there's just not that much awareness out there about it. You know, I mean, when we left the hospital, we still didn't really fully understand what was

GBS Awareness IVIG And Plasma

SPEAKER_02 51:02

going on with him, you know? And so again, the purpose of what he's trying to do is one of the main reasons is to make awareness, you know, of GBS, you know, for people to to know more about it.

L. A. Sprague 51:17

And you seem equally as passionate about that, which is so cool.

SPEAKER_02 51:22

I really do because I don't want, I don't want someone to go through what we went through because, you know, there's it's it's not out there. It's there's not a lot of patients with GBS. So it's not like, you know, uh, and I I hate to say, but it's not like cancer or heart, you know, issues or things like that. It's something that there's so few patients with it that there's just not an awareness of it. And so getting that out there so that even one person, you know, can find out about it. I mean, Miles has been distributing pamphlets and paperwork all over this county, not to mention a couple of other counties, to neurology offices, to medical offices, to wherever he can take these pamphlets and put the information out there so that, you know, even the doctors who haven't seen it in five years know, you know, what it's about because I don't think they are able to touch on that a whole lot in medical school, you know, because there's so much for them to have to take in. And I just feel like that GBS just it needs to get out there. People need to be aware, you know, if your spouse or your mother or your dad or somebody starts having some of these symptoms, you can immediately say, Oh, I heard a podcast about something like this. I wonder if this could be it. And you go to the hospital and say, Can you please check for GBS? And of course, the way to do that is with a spinal tap.

L. A. Sprague 53:03

Wow. Okay. Geez. Yeah, yeah, yeah.

SPEAKER_02 53:07

And what was the IV that helped him? It's called IVIG plasma. And that is what goes in, to my best of my understanding, it goes back in and starts healing up these nerve fibers. Because what GBS does, it's you know, it's an autoimmune syndrome that attacks the immune system in your body. It starts eating away at the sheaves that surround your nerves. And so once those sheaves are away, that's what happens. Then your nerves, that's where the paralysis and all that stuff comes in. And so the IVIG plasma comes in when they start administering that and starts helping to somewhat heal these five, these sheaves around the nerves that have been destroyed. Wow. I'm sorry. Yeah, that's that stuff is a lifesaver, and that's why plasma donations are so important. You know, it's so important that people donate plasma. But you know, I heard the other day where they are, what was it? I heard that they're coming up with some way to artificially make the plasma so that they don't have to rely on humans or people to give plasma. So that would be a major breakthrough if they did something like that.

L. A. Sprague 54:37

Yeah. Dude, that'd be awesome.

SPEAKER_02 54:41

Yes.

L. A. Sprague 54:42

Well, thanks for sharing the information about GBS. I love that it seems, you know, you guys have a passion to share that information to spare some people, you know, the time and the pain that you guys went through. And so thanks for doing that. It's awesome. So I'm curious, obviously, through you know, this experience you've learned, a bit of advocacy, you know, with GBS. So I'd love to hear some more of what you've learned at while you know, as being a caretaker, since things have changed, what do you think are some things that God is teaching you?

SPEAKER_02 55:21

Patience, understanding how to be humble,

Patience Boundaries And What Helps

SPEAKER_02 55:30

and more so of how of relying on him, you know. And that's the thing, you know, for caregivers. Sometimes it can be very frustrating. Mine maybe not so much, but I went through with my mom and my dad. My dad had dementia and being a caregiver for him and the stress and you know, the emotions that were in that, and seeing how my mom bless her heart, could get really upset sometimes, you know, with my dad. And during that, I thought, I would never do that. I'll never do that. I, you know, I just I I just I could never get upset with someone who was going through a chronic illness or anything like that. And so, in a way, it's almost like going through that with my mom and dad prepared me for where I am today. Wow. It it prepared me to be humble and kind and you know, to do whatever you can to make them comfortable and to help alleviate what pain they may have or whatever they need, you know. A lot of times if Miles has got nerve pain going on, can I get you uh gabapentin? Because that's what they take, you know, to help with a little bit of the pain. And he doesn't like to take any medicine at all. And so, you know, and he's like, no, no. I'm like, well, you know, honey, by not taking it, it puts more stress on you. It puts more stress on your body. Whereas if you take this, it kind of eases that pain and causes less stress on you. So, you know, just doing things like that, just just being, you know, the person that you would want, you know, someone to be to you if you, you know, were in that situation, you know, how you would want them to react to uh whatever you know is going on, you know, at that time. So just I and I know it's difficult. I know as a caregiver, it's difficult some days or worse than others. But when again, when it is someone that's close to you and your family or your spouse, I mean, just loving them, just letting them know that you're there for them is the main thing that, you know, that I can say to a caregiver who maybe is going through a difficult time. I always, you know, with something, you know, like this, always tell God, I am your vessel. You use me to say what it is that you want to say, maybe to that one caregiver that's out there who is just very emotional and very tired and just worn out, you know, just a word of kindness or or just hearing me say, you know, get in a little quiet corner and just get on your knees and just lay it at the altar, lay it at God's feet and say, I can't do this. So I'm giving it to you and letting you do it, letting you handle this. You know? So that's to me, that's that's how you know I did that first night when I came home, you know, after I called everyone that all my war prayer warriors, I got on my knees and I said, Lord, I cannot deal with this. I I can't. I give it to you and I'm leaving it at your feet. And I did.

unknown 59:28

Yeah.

L. A. Sprague 59:29

So for you, it was super important to, like you said, literally posture yourself for prayer and just admit to God this is too much for me. I can't do this. So I need your help. I need you to to do this for me. I need you to comfort miles for me and give me the strength, and also reaching out to other like-minded people that would pray for you and be there for you.

SPEAKER_02 1:00:00

Yes, absolutely. Yes, and you know, and I have I have you know some family. My sister uh is close by and uh she is the one that is married to the doctor, and she's a doctor as well. They're both radiologists, but my sister has retired, and so my brother-in-law is still working. So, you know, having him there to be able to come in, you know, and look at Miles's chart, you know, and tell us something in layman's terms, you know, that maybe the doctor came in and said, and we're miles and I are looking at each other like, what does that even mean? You know, and then to have, you know, a family member as my brother-in-law to come in and say, well, this is what it means. I mean, that was a blessing within itself right there, you know. And that's the thing too with caregivers, you know, when you are, you know, the one that is going to be taking care of this person when you bring them home, find out all that you can before you leave. And I know like us, we didn't even know really what to ask because it was GBS. You know, you didn't you didn't know what to ask, you didn't know what really to expect, you know. Unlike, you know, if someone has had heart problems, you kind of know, you know, no stress, you know, let them relax when they get home, blah, blah, blah. But with GBS, we knew nothing, except a little bit that we had learned in the hospital. And so, you know, I just encourage caregivers to find out all that you can, you know, before before you leave the hospital. And then when you get home, research it. Do research too, you know, like we did to find out more about what's going on. Because knowledge is powerful. You know, the more you know about something, the better care you can give someone as well.

L. A. Sprague 1:01:58

Yeah. Thank you. That's a good reminder for us who are patients as well, to not give up on our search and trying to improve our lives the best we can. So thanks for that encouragement to do research. And in a way, that's that's advocating for ourselves too, I suppose, isn't it? Yeah. Yes, exactly. Yeah, I think my one of my last questions for you would be when Miles is having a rough day emotionally or physically, but in this case, I think particularly when he's struggling with the anxiety, how do you differentiate your emotions from his? So let's say he's having a pretty rough day with anxiety. You've kind of done what you can to, you know, encourage him. How do you allow yourself to have a good day, even if he's having a bad day?

SPEAKER_02 1:02:55

I think I'm one of these people that stay busy all day. I'm always doing something. Miles is always saying, can you not just sit down? Can you not just rest? You know, but I'm one of these people and have always been that way, where I'm just constantly doing something. So I just busy myself. You know, I busy myself and not, you know, try not to let anything get to me. I just try and stay busy. I love to bake. So I may get in the kitchen and lo and behold, we have a ton of cookies, you know, or something like that. Or I take the dogs out for a nice walk when it's a beautiful day, you know, just to to calm myself down if I'm feeling anxious because he's anxious, because I hate when he's anxious, because there's nothing I can do, nothing I can do to take that away from him. And he hates it. He says, I hate it so much. I hate the fatigue, I hate it all, but there's nothing he can do about it. So, you know, there's nothing that I can do for him, you know. So if he just wants to sit in that chair and watch TV or read or whatever he wants to do, then that's fine. Then, you know, I will find something to keep me busy. Even if I want to read, I may decide to sit down and read with him, you know. But I for me, it's just staying busy. It's just constantly finding an outlet of something, you know, to do. I may go and visit my mom, or I may, you know, I may decide I might want to go shopping or something, you know. So that's how I deal with it. I'm just constantly going and doing and, you know, just try and not let it get to me, I guess.

L. A. Sprague 1:04:57

Kind of finding things that you enjoy and keeping yourself in momentum. Yes, exactly.

SPEAKER_02 1:05:04

Yeah.

L. A. Sprague 1:05:05

Well, I think our last question today would be for all the caretakers out there listening, what would be one

One Message For Every Caregiver

L. A. Sprague 1:05:13

word of encouragement you would have for them?

SPEAKER_02 1:05:16

I know it's difficult, and it's not something that you probably plan to happen in your life, but neither did the patient. The patient didn't plan it either. So I would say just again, be humble and kind and loving to that person, even when the days are tough. Just remember that they didn't plan for this. This is not what they wanted for their life. And that, you know, if it gets too much and you need to seek counseling, whether it be, you know, at a uh health facility or whether it be at your church or a friend, even a friend, sometimes just talking about it to someone, I think can help relieve maybe some of the anxiety or the stress that you know the caregiver may have because it's psychologically stressing on the caregiver, just like it is on the patient. But again, you know, I have to keep telling myself, my husband didn't ask for this. So, you know, what can I do to make his life easier?

unknown 1:06:37

Yeah.

L. A. Sprague 1:06:38

Thanks, Cindy. I appreciate that. Thanks for that wise word of encouragement.

SPEAKER_02 1:06:44

I hope that it it does encourage someone, you know, and and you know, I I don't know how this would work, but you know, I would be open to anyone, you know, having questions if, you know, if there's ever someone who has a question, you know, about it or just needs someone to talk to, you know. I mean, to offer a word of encouragement to them. You know, I would be happy to do that as well.

L. A. Sprague 1:07:09

Yeah. If you'd like, I could put your email in the show notes. If that's it for you. Okay. Sure. Thanks for that. That's so sweet.

SPEAKER_02 1:07:17

Absolutely. Absolutely. Well, and I didn't realize that you had a chronic illness. Yeah. Wow. Okay. That's all right. I'm sorry, sweetheart. So it's all right.

L. A. Sprague 1:07:31

Thank you so much for your perspective. It's it's helpful. I I have a husband, and so it's helpful hearing, you know, where he might be coming from someday. I mean, right now he's pretty well adjusted, but you know, someday I'm sure it'll wear on him. So yeah.

SPEAKER_02 1:07:50

Well, you know, as it would anyone, you know. Of course. Um, but again, when you love someone, you know, you just do you do what you gotta do. Yeah. You know, you be there for them if it's nothing but to sit there with them and hold their hand. Sometimes sometimes that may be all they need. It's just for you to hold their hand.

unknown 1:08:13

Yeah.

L. A. Sprague 1:08:14

Well, thanks, Cindy. I really appreciate you being on the show. And I hope that everyone listening, I'm sure that it was encouraging to many caretakers. So thanks for sharing your story.

SPEAKER_02 1:08:25

Oh, absolutely, sweetie.

L. A. Sprague 1:08:27

Thank you so much for being a part of the Christians with chronic illnesses community. Please remember to follow Rate and subscribe to the show.

Follow Subscribe And Share Your Story

L. A. Sprague 1:08:34

You can also follow us on our socials at CWCI Podcast. And if you're interested in sharing your story, please email us at cwcipodcast at gmail.com. If you are interested in contributing to the production of Christians with chronic illnesses, please see the show notes below for subscriptions starting as low as $1 a month, or email us for a more direct way to give. This show is hosted and produced by Alex Breck, and our incredible logo, thumbnail, and overall CWCI artist is Brianna Middleton. This show is intended for entertainment and encouragement purposes only. Please talk to your doctor before trying anything you hear on this show. Until next Monday.