Alejandro

Now, with respect to this particular trial, there is this type of lesion in the brain, white cells, that is not responsive to that DMT. So, there's activity. There's MS activity happening in your brain even when you're taking these disease modifying therapies, or at least the one that I'm taking. And I don't think there's any others that would stop it. And so, we are testing with the drug, with thinking that it could actually stop the activity, that is not stopped by other DMTs.

So, I had a first visit and a phone call. Once I got the protocol and the details of what it was, then they had a list of the things that I would have to consent to and it's like, you're committing to this, if you are going to be working with us.

We went over it once and then weeks right before we actually got the schedule done. And then, when we got the schedule done, and I got the schedule, we also went over it over the phone—like, these are the things that you're going to be agreeing to. And we went over the things I still— you need to confirm before you do MRIs and the things you needed to confirm before the lumbar puncture. So, we did all that, including COVID, making sure that I didn't have COVID. But then, when I thought I had done everything, and I was ready to get my dose, then we went over the form again and just a reminder of all the things that I was committing to and also, what the program was—so again and with a person, and with the person waiting for me to nod and acknowledge every single part of it, before we move into the next section, which is all welcome. Because there were things there that I had read about, but it was a good reminder. So, when I signed up, before I got my dose, I was like—I said, yeah. I have the information I need. It was not a matter of, oh, I forgot to ask this, I forgot to ask that. I felt pretty good that I had information that I needed. And so that gave me peace of mind, too. And so, I signed it. And I got my first dose.

I mean, in this case, I prefer not to drive because I'm still driving. And I have no problems with driving, but because I'm getting fatigued throughout this procedure, and especially for the lumbar puncture, but also for the MRI, I'd rather not have to drive after I'm done. So that does mean having to pay for the cab. So, in that case, that's something they cover.

I have to inject myself every day, which is something I've never done. But it's, I think, what they call-- it's a subcutaneous injection. So, you're just injecting the fat in your body. So, it's not a very deep injection. And it's a bit painful going in, when you're actually putting the medicine in. But it's not something that, if you deal with MS pain, just can be pretty painful. It's almost like it's close to nothing. It's not a nothing, but in the big scheme of things, it's not a problem. And it's the first time I'm doing that. So, I feel like, if you wanted to do it, I think anyone could do it, for the right reasons. And I've tried acupuncture, and you get more stings with acupuncture. And they say they don't sting, but they do. And sometimes it can really sting. Also, I wouldn't want to tell people, don't do it because it hurts. I think it's a good therapy.

And then to do that, first, I had to go in, get blood work, get a set of MRIs, and do a spinal tap or a lumbar puncture, which was not a great experience. It was all worth it, but I think that it's just something that you wouldn't do it, if you didn't have to, you didn't have a good reason for it. I think this is a very good reason to do it. And I think that for the lumbar puncture, I just think they want to see what's happening in your spine before and after you follow the treatment.

And especially the first one, when they did the lumbar puncture, that was two heavy days—so something to keep in mind.

Now, I know I started—part of what I've done in terms of research is I do work with [ORGANIZATION]. And I appreciate everything I learn in that experience. Because they learn, and I like that. I learn, and I like it. And it gives me the sense of somehow, in some weird way, me being sick may help somebody get better. So, the fact that they—I think they asked me if I was interested in donating my body to science once I'm dead. I find that very, very cool. I mean, hopefully they don't help me die in the first place, which I don't want to do. I don't want to die. But what I mean is more about the idea that, more than ashes, your body can be used for something. I find that to be really, really neat. If they come and pick up the body, even better. It resolves a lot of logistical things.

Back then I was falling but I always had a reason or an excuse of why it happened, which was true. It's like I fell because I was walking. But more about I was walking and doing something else, just not paying attention. And it won't happen again. And I would do things like that. So, every time I fell, I just attributed it to the circumstances, and not necessarily to the fact that I wasn't going to clear it anyway, even if I'd been thinking only about this. My foot drop is there, and the weakness gets worse with fatigue. So, attribute it to fatigue, keep going, be more mindful next time.

I have balance issues, and I have the foot drop. I can still walk. I can still walk unassisted for short distances. In fact, I could probably walk 10 minutes without much problem, outside, without the use of assistive device. But if I do that, I prefer not to talk to anyone, not to be holding anything in my hands, not to be thinking of anything else other than my walk.  

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But if I wasn't doing that, I would be running a risk of getting fatigued very quickly, falling, and just cognitive distortions that come with fatigue. And that could be like just a little bit of a feeling of I don't know where I am or I don't know where I'm going to get, a bit of anxiety building in quickly.  

I have memory issues. And those could be described as you told me something once. I may forget it, so I write it down. Names, it can happen. It can also happen that if you ask me a question I'm not prepared to answer and I'm answering on the go, it may be that, in the middle of the question, I forget the question in the middle of the answer.  And then it will happen that I will change words. So, we could be talking about a car, and I may just call it something different. And normally it's something related to car, it could be whatever. It could be a box with four wheels. You communicate whatever you think that is going to get across. That's what I do. 

I started figuring out who I was going to see next because I didn't want to go back to the first neurologist. So, I found another one. I found another one who was not a specialist in MS and gave me good advice to go to my current neurologist MS specialist. I met somebody who's really oriented to treatment, both in MS and symptoms. That's my current doctor. So, when I saw her, she was so what I needed, which was I needed a treatment and I needed somebody to talk to about my symptoms and just the day-to-day. Again, I think it's specialized in doing that.  So that was, I think, January. So, going back to September of 2017, when I got diagnosed, then a few weeks to go through the [INSTITUTION] process, and then, finally, getting in to seeing somebody that I felt comfortable with. That was in January of 2018. Yeah. January 2018.  And during the meeting, and going over potential treatments, that's when we picked—well, I picked the treatment, but I thought it was a great choice.

But that help from the neurologist, even when she tried her best, was really not enough. And it would not have been enough. Because at that point in time, I needed the help of many. It was only with the help of many that I started to change things around. And then I changed in a good way. I do feel that if you have a professional team, if you've got one person, and that person connects you to another, then that's a good start. But even sometimes, it's even difficult to find that one person. And even when I thought that one person was doing everything for me, I think that would have been fine. That could have been fine. Right? There's nothing wrong with that. But it didn't work for me. There was a point it didn't work for me. And there was candor to me. So now I think about teams. And it's not that I need to hear it from one or a second or a third opinion, it's really not about that. It's really just about being able to have that conversation and ask more questions.

I continue to go to [INSTITUTION]. And I have protocols in place so that every year they're seeing me. And I'm happy. I love them, the same way I love everyone who's helping me and not helping me. But I do love them. They do a great job. I'm always looking forward to my next visit. Even if it means MRIs, going two or three hours in the thing, and doing a bunch of tests, and normally tell you you're not doing so good on things, I still love it.

I did because I felt I had to. It had to do with ethic, work, and responsibility. I needed to say I can't work. My doctor told me I can't work. And I need to tell you why. And I went to the people I work with who I trust. And even that was weird because I was not thinking that they were going to be mad at me, or they were not going to like the news. It was the admission, to me, of all those times I had said I was doing fine, and I wasn't. That was very difficult. Very, very difficult.  

And once I did it, I was not happy I did it. I only say that because that weight around me didn't lift as a thing of relief or peace because I was still profoundly depressed. I don't think anything I could have said or done at that time would have make it better. But it did help me. I didn't look at it at the time, but they did help me greatly. And one of the things they helped navigate was who else needs to know and what do they need to know about me being outside. And those questions were not clear to me at the time. They are clear to me today. My answer is no one is entitled to that type of information in the work context, no one except your employer at the time. And just they need to know very little, but enough. That could be different for every single individual but, to me, something I never thought about before was something very difficult to execute.

Of course, at work, it's the fear of people looking at you differently. And for me, many of my good friends that I work with, or have worked with, and now they're still part of my profession. And there was this idea that by telling them, I was just outing it to the whole profession. Which is, by the way, insidious. And it's a terrible way of thinking. And it needs to stop, that way of thinking. But I know. I know. I know why I did it. So that was a big part of it, not showing weakness, and then the idea that if you are in a profession where you're supposed to help others, when you yourself are showing a weakness, that you perhaps are the person who needs help, that idea can play with your mind. So those were really the things behind it, to the point of when you're asked a question, “How are you feeling today?” You may be feeling terrible, but you answer fine because you're not going to tell. And that has also this effect of that's how you start living your life, with this thing inside of you that's very active, very aggressive sometimes, and then this other conversation to the outside world that is just like everything is OK. So, to me, every time I hear somebody say everything's OK, that's an invitation for me to ask the follow-up. What do you mean OK?

So, I went to the first meeting. I had a good time. This is the group where it was only 60s and 70s and 80s people, all with years and years of MS experience, and just talking about how you were doing that day, and perhaps talking about what you were doing for helping to go to the bathroom, and just talking in very explicit terms about what we're going through, which was a great thing. Because perhaps only in that group, you can share that way. And it was great. And it was good to see myself doing that in several years. I heard that younger MS-ers tend to go to one meeting, and they don't go back. There's this feeling of that's going to be me soon. Or that's how I feel, and you don't want to see that. I can understand that. But I mean, if you look at it from the most basic-- at the most basic level, they are still breathing. Right? And they're still showing up, at the most basic level. But that is just scratching the surface. I mean, you really get a ton of that understanding, of people who get it, everything that you're going through and more. And whatever you say, it's not the first time they heard it. It's not the first time they heard it. And you go through challenges, and you go through wins. And yes, sometimes the win is that they showed up.  

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.

I contacted my neurologist. I said, “You know, I'm having trouble sleeping.” And sure enough, she prescribed some medicine for that. She thought that by getting back my sleep, probably fatigue would start easing.  And I tried it, and it didn't work at all. And that's when-- it's supposed to be working. Took a few days for me to recognize that. When it didn't happen, I contacted her, and I told her about what I was going through. And she just told me, “Alejandro, what you're going through, actually, it's depression.” Basically, I described it well enough when I said it that she said, “Just don't believe—” I mean, I told her some things and she said, “Don't believe what your mind is telling you, the storyline. You're depressed. We'll do something.”  And so, I went in. And I tried all that, but we didn't catch it. It's not that it was something that you could say, “Oh, this is it, magic.” So, it became something more profound. And it took several weeks for me to actually be able to recognize what it was and learn what it was, and perhaps just recognizing what it was. And something very important for me, to separate it from the MS. And once I did that, things started turning. Because for a while I was just thinking this is all-- I don't know what's happening, but it's not me, so therefore it's MS, because that's the only real thing in my life. But it turns out that, no, it was textbook depression. And at that point I didn't care where it came from, because it was important that I knew that you can treat it. That, you can do something about. And with that realization, which was maybe 18 months ago, I was just back. I was back.  So now I know more about depression. Now I know about MS. I know about severe anxiety. I realize what it can do to you. And I realize when it's doing it to me. And I can do something about it.

Well, I think what hurt the most, when I was not getting the help, is that I didn't know how to ask for it. So, it was like, I know. I know I need help. So, it's not any more about whether people know that I'm sick or not or that I'm going through this. At that time, I didn't know about mental health. All I knew was that I had MS, and it was making me feel horrible with life. But people will tell me I was depressed. But I didn't know what depression was. But I knew that I had my neurologist, and that's the only person I have. And I had all these questions, and I knew I needed help.

That's how you adapt to something like MS. You just withdraw from social events. But then it was too much. And that separation really was not good. And that fear of going outside the house, fear of falling, fear of people seeing you weak, that became a very heavy burden to carry, which led to severe depression. Coming back from that, after I got treated, I did go back to doing the things that I like to. OK? And part of it was come back, but also part of it was, I can still do it. So instead of shutting myself down and saying, you know what? I’m not bothering, I was saying, I can actually walk to that place and have lunch, or I can actually jump in the car. I don't know about tomorrow, but I can do it today. So, if I can do it today, and I want to do it today, what am I waiting for? Right? And then it became just a thing, not even thinking about it, just doing it. Right? So doing that, changing the way I was thinking, did wonders. And now I feel engaged.

I have a new definition of resilience, which I used to call perhaps like a quality that someone may have, the quality of being resilient. But now I think of it more as a skill to be resilient. And sometimes it doesn't work. I know that now. And that's fine. So, it says nothing of me if there's a time where I can't be, because I know when I was down, even when I consider myself as having a good resilience skill, I was not able to use it. I was unable to use it. And it was a time I needed help. And that is just something I never thought about before.  And now I have help. I have professional help. I have friends. I have a circle that starts with me, surrounding me. And I have all these layers, or layers and layers of people. And they're all closer and closer to me. I call them, they call me. I talk to them, they talk to me. It's completely different way of living from whatever I had before.  It makes me so happy, because I am in the middle. And I am number one. And I have a beautiful, two-year-old daughter. I have a wonderful, beautiful wife. I have a six-year-old daughter. I have all that. And still, I'm the precious one. And I'm OK to say that on national TV.

Be nice to yourself. Because that is so counter to what you can be thinking at any point in time, that just giving yourself just a second or a minute or 10 minutes to stop thinking and feeling whatever it is, and just give just 5, 10 seconds, 10 minutes to yourself, and say, OK, I’m just going to be nice to myself, even if it hurts. And it could be just laugh out loud, even when you don't feel like doing it. But give yourself that laugh, that moment of forced happiness, right? And it's going to multiply. You've got to start somewhere. You've just got to start somewhere.