Parenting and Pregnancy with MS

We had to sit down and talk about it. Well, the way I explained it was it has to do with my nerves. And the number one issue of it is stress. And this is something that I have to work through. And they feel much better now, much better than when I first started dealing with it. So, I just explained to them-- I just want them to do the best they can. And my oldest daughter just finished-- she graduated from college. She's an IT major. So, she got a job with Microsoft. So, she's doing good. I know. And I just wanted them to keep pushing-- you cannot worry about me. I'll be fine. I'm going to take the medication, and everything's going to be fine. So, I just explained to them that it was, like, with my nerves, something with the nerves. And I just have to take medication to help me get through it. Yes, so they were just listening. And they probably looked it up as well. They probably looked it up on their phones, and everything, as well. But they were fine once I started getting better.  

When I eventually did tell my kids-- because I told my kids before my people at work-- when I eventually told my kids, that's always a delicate issue when you're dealing with little kids. And I told them-- I think I compared it to diabetes because they had a teacher that had diabetes. And so, I think I referred to him, and I said, you know how he's got this-- essentially, I said, you know how he's got this disease that you know-- you all know that he has the disease, you all know that he has potential to have like high blood sugar, or whatever, low blood sugar or whatever happens. And-- and people know what to do. I said, well, I have something similar. But he's not going to die from it, I said, because I know that's one of the first things that kids worry about-- or I think that's what they worry about. So, I said, I have this disease, and it's-- it's a lot like Mr. H. It's not a contagious disease, and it's not going to kill me, but it’s-- it will affect the way-- it affects the way I do some things. And so, it just took a while. We kind of eased into it through that.  

INTERVIEWER: How do you how do you talk to her about your MS?  
I have shared my experiences with her, not the negative part of it but the positive part of it. So, I tell her that this is what it is, but this is how we need to lead our life. She has started understanding that, and I have coached her that, even at the age of 10, whatever she could understand. But I think that she has understood that this is what I am. And believe me, one day, and I'm sharing this very personal stuff. So, one day I was showing her my old DVDs, my videos, and I was climbing the mountain. I used to do that, so I used to climb mountains also. She asked me a question, “Dad, did you ever walk, or you were always like this?” I said that I was never like this. You have a video that proves that I used to do all of these things. I am jet skiing and all this stuff. I saw that smile in her face that it is not like that. And she asked me the question, “Can you tell me what actually had happened and why you limp today?” And then I told her the entire storyline. And whatever she understood. But I found that her reaction towards or helping me has gone up multiple folds, I have seen that.

She's 11. She's probably the best thing I've ever done. And having MS has maybe made me a better mom. Because she's my number one job. And she doesn't have to compete against another job or career.  I have to slow down. I'm not the go, go, go, person that I was before. So, it allows us-- we're very close and very connected. And it's because I am the one who-- I can sit around with you for three hours and play with dolls, doing whatever imaginary things. Well, we're out of the doll phase, but anyway, you know what I mean.  So, I guess she's like my little sidekick. My little best friend. And it's nice to be able to grant her so much time. So, I'm lucky in that way.

I think I probably could have done more or been more involved or just probably been a better parent without this. Because it affects so many areas of my life, it has kind of taken away from how much time and energy I can give to other people. And yeah, I think I could have probably done a lot of things a lot better without the MS, whether it's just thinking and doing and just being involved as much. I just wasn't always able to be there when they could have used a little bit more.  

INTERVIEWER: Can you talk about how getting diagnosed with MS has changed your ideas about being a father?

Yes. The diagnosis of MS and being a father-- wow. That's-- it used to be that answering that question, or knowing that I had to answer that question, would weigh me down significantly. It doesn't today. So, if you're watching this and you're having this feeling, I can tell you it's real. But you can get someplace better.

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My experience-- yes, every single time, I was looking at the things I was not doing anymore and saying, oh, my god, I cannot keep this soccer game. I'm not going to be able to play soccer with my daughter.

Oh, my god. I can't. I can't run, let alone just catch up. If my daughter starts running and she wants to cross the street, I can't get in the way of the upcoming truck or bus. It's going to be faster than me.

I'm not going to be able to hold my two-year-old daughter. I don't have the strength. Oh, my god. Will I be changing my diapers instead of me changing hers? Yeah, of course I'm thinking of all those things, and probably worse. But those were recurrent. I mean, the diaper one is probably not. But yeah.

I was having dreams of walking up and down the stairs, being able to fast, quickly walk up and down the stairs, and then giving them relief. And then waking up and being the same, but at least at that time, in that dream, was doing it. And dreams of running also.

Don't think about it anymore. Because there's no guarantees in life anyway. I'm doing a lot today. I'm doing quite a bit. I'm not saying I'm doing as much as I can. But I'm doing a lot. And it's not productive to be thinking about anything else. And I don't know. But I'm having a very good life, so what am I thinking of? [INAUDIBLE] really.

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When I learned about the second daughter, I told myself this was the year when I was going to learn what a man is and how to take care of myself, and I was going to be number one. But now I can't. I can't because now I'm number two, or number three, or number four, or number five, because we have other things to worry about-- daughter coming, other daughter, finding a house, keeping track of work.

And then not knowing, of course, about MS [INAUDIBLE] but still. Other things that are more important, more present. So, we're going to focus on those.

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I liked taking my daughter, walking her to her daycare. And I remember many times just carrying her, and how I was very careful, how sometimes I was just terrified that I was going to fall, that something was going to happen. And it never happened. Absolutely terrified of that happening, which I'm not anymore. But I'm also, more than any other time, aware of my limitations and things I shouldn't be doing. So, it doesn't bother me anymore. And none of this stuff bothers me anymore. No time for that.

When I was diagnosed. So, at the very beginning I was newly married. I was at the point where-- so when I got married, I wanted to have kids. I wanted to start a family and be a dad and do all the things dads do and just be the average I go to work, I come home, I take care of my kids, I go to work-- just beyond the hamster wheel, if you will.  Well, now I have this chronic disease. What does that mean for doing all the things dads do? I might not be able to play catch. I might not be able to-- if they want to go camping or hike a mountain trail, I might not be able to do that. When I have a newborn, am I going to be comfortable holding them while walking upstairs? It was worried about that type of stuff. How does this change the plan I had for my life?  

I wasn’t in a wheelchair. I didn’t have a cane. I was active. I was active and, but, you know, all the, you know, maybe mom is going to be at the back of the line. I mean, I was there for field trips and stuff. I might be a little on the slow side on some days. The majority of time, no, I wasn’t. So, yeah, I went, I did a lot with them. In fact, their father was busy working all the time, so I was working and mothering all at the same time.  
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And they really didn’t get deprived of anything because my son, one of his Scout mate's mother was bedridden, and that wasn’t me. So, yeah, everybody has their own problems. And, you know, my kids never really thought of me having MS. Now my daughter does, the young one, because I had her so late in life that, you know, and it’s come, I think maybe my MS has topped, and that’s, it might not go any further. So, I just, you know, I had to just, I’m the mom that wears the flat shoes. I’m the mom that can’t wear high heels. You know, but I’m also the mom that’s the age of her friends’ grandparents so [laughs] but that’s, you know, it really did not affect the kids.  

INTERVIEWER: Who was helping you get the kids to and from school and to activities?   

Some very, very kind neighbors. I mean, I used to be one of the carpool moms, getting them to school. So essentially, I dropped out being able to do much of anything. My husband did some, as much as he could. And nobody made me feel terrible about it really except for my son. But the great neighbors, just the carpool, they would swing by. And I didn't have my carpool turn anymore. And we managed it. There were also school buses in [LOCATION] for everybody. So yeah, it was a combination of driving kids to a sports thing maybe. But eventually they were both able to take buses home from school.

INTERVIEWER: So, during those periods where you were having more symptoms, can you talk about what it was like to be a parent during those times?

Yeah, it was very stressful. Because I would just be laying in the bed. And I would see my youngest daughter just walk past my room. She would be looking to see if I may be up or going to get up. So, it was kind of-- it was very stressful just not being able to get up. Because we would always get up and go out or doing things. Because she dances, too. So, we were always going to either dance, or school. She runs track, so we were always do something like that. My oldest daughter was in college. So, she was in Delaware. So, I would just talk to her, text or call. But my youngest daughter is the only one that really saw it on a daily basis. And she probably was very worried. But I would tell her, “I'm OK, I'm just resting.” And I really was trying to rest, thinking I needed to rest a lot. Just so my body will be OK if I really needed to get out and go.  

Now they're very understanding, and obviously, very helpful. In a lot of ways now, I’m-- I'm happy to have that. I'm happy that they're able to grow up with-- or they were able to grow up with somebody who has a disease so they have that understanding, that-- that better understanding of what people in that position might be going through. It's a-- it's a different perspective, I think, a better perspective to have, a more complete world view.  

My oldest daughter understood really well. My youngest daughter being in fifth grade, she understood. She just went, oh, OK, because it wasn't like-- you know, when you're in fifth grade, it's not quite in her dimensional world. It's-- it’s just a diagnosis, and it's like OK, what is that? It didn't really mean much to her, I think.  I'm not going to say she didn't take it in. It's just-- she's just in a different place at that time. And my oldest was in high school, so she was worried. What did that mean? And what was going to happen to me? I think though they managed well, both of them. I think it's because I didn't play it like, "Hi, I'm going to be in a wheelchair in two years," or something. I just said, "Well, you know doctors think that because I'm older, it's a better chance that I would be totally functionable. " They did OK. I've never really asked my oldest daughter if that bothered her, but I knew it bothered her in some way, shape, or form. But I think they all just kind of-- as they saw me just become-- do everything that I used to do, it was a little more easing to them. So it wasn't-- it wasn’t like I had lost my sight or had to be hospitalized, because I never have been in the hospital, and I never had any of those extreme cases.  So for them it was just dealing with whatever minute problems I had. And I didn't talk really much about like oh, don't because my legs are numb or something. I didn't talk about a whole lot of that. So, I think they just adjusted, and they knew that I had limits. And they still know that, but-- I don't know-- I think they did OK with that transition.  

Well, I had a flare up-- after I was diagnosed, I was in my late 20s, I think. Yeah, it was just before my birthday. And my husband and I were married. Had been for about four years. But did not have any children, but we were always planning to. And so, basically, I got concerned. Well, my doctor initially told me, because of the cortisone, I guess, not to continue to use birth control. And I was cleared to become pregnant about a year later. And our son was born in November of '72.  As it turned out, early in '72, what would have been about the time of implantation of the fetus, I had another flareup from walking, et cetera. But then I had my baby, and we came home. And life continued. Then two years later, we decided to have another one. I had another flare up, again, what, in retrospect, is about the time of implantation. And so, I then had my tubes tied. So that solved that problem.

When I moved up here, I literally only had three neurologists over this time period, and two since I've been in [LOCATION]. And both of them up here were very receptive. My first neurologist, when I moved up here, a lot of people, a lot of women experienced side effects after having babies. There was a lot of relapses. So, she did a little bit of the doom and gloom post-pregnancy, in the effect of, “Oh, well, you may not be able to nurse because you'll need to go right back on your medication,” which I was really not OK with because I really wanted to be able to nurse. That worked out for me and for my child, and that was something I was going to do, even if it meant I had to postpone going back on my medication. I feel like it was a fairly positive representation. I also wasn't going to let it stop me from having kids, if I was able to and wanted to.  

I think, this has been, maybe one of the more positive areas of development in my experience of being a neurologist. over the past 20 years or so. long time ago, When only some therapies were available. it was always a very hard decision for women to decide if they wanted to pursue pregnancy. The other thing is that I think, you know, oftentimes we'd see people who said, “my doctor told me I should, you know, make sure my MS is under control before I think about a pregnancy.” So it's, you know. so it's a hard space for most women, I think to think about pregnancy and that journey and all its complexities. But the MS and its treatment definitely offer increased complexity, and it still does, I think. What's a little bit different is that we have found in our clinical practice, which is not necessarily consistent with FDA labeling, medications that some of the longer acting medicines, or one in particular can be used pretty successfully to help women who need treatment whose MS appears not to be quiet enough that they can take the risk of going off treatment. it's long acting enough that we can sort of help people relative to when they receive the medication, and at least in our experience so far appears to be carrying people pretty nicely for the most part through the pregnancy and postpartum period.