AMI PODCAST
Season 1 - Episode 10
The Truth About MS And Mortality
Newer, highly effective medications mean that MS outcomes are improving and that there's a lot to be hopeful about. This episode isn't meant to scare you, but to clarify what it means to die due to complications from MS, so that you can minimize your risk factors and live your best possible life.
Transcript
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Speaker 1:
I'm Ardra Shephard and this is Tripping on Air. A place to talk shit about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love, so weighing in from the partner perspective is Alex Hajjar, my friend whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you. The first rule of MS is that everyone's MS is different. Disease modifying drugs are changing MS outcomes, and there are many reasons to be hopeful, and if that's all you can handle hearing right now, I get it.
Stop listening and tune into the gift guide episode. MS is a lot to process, and none of us needs to figure it out all at once. If you're still listening, buckle up because the second rule of MS seems to be that we don't talk about worst case scenarios. This episode isn't designed to scare you, but to educate and empower you because what gets measured gets managed.
Alex, how do you feel about unpleasant information? Are you all in or do you prefer a la la la, I can't hear you kind of vibe? Are you a, you can't handle the truth kind of guy? What's your ammo?
Speaker 2:
Yeah, my thing is I'd like to know what's going on, I like to be informed, but I try not to maybe spend too much time on the hovering or wallowing maybe on the details. I'd just like to know what the status of things is and then go back to the day-to-day minutiae of our lives anyways.
Speaker 1:
I mean, I feel like that sounds reasonable. That sounds healthy.
Speaker 2:
Thank you. I think it is. I hope it is.
Speaker 1:
You're welcome. The rumor is that MS is a life sentence, but that it's not a death sentence. A 2022 WebMD publication adds that on average, folks with MS live seven years less than people without MS. WebMD is trying to reassure us here, but I feel like you're not going to die from MS, but you're not not going to die from MS isn't particularly comforting and it's definitely confusing. I mean, it sounds a lot to me like MS is coming for you, albeit eventually. I think we need to talk about what's impacting that mysterious seven years.
Speaker 2:
Yeah, that seven years is a daunting figure, but I wonder, is it fair to say that some doctors and MS websites go out of their way to minimize these risks, to say sort of that you're not going to die from MS? This is the big myth that we alluded to in the last episode, right?
Speaker 1:
Totally. I mean, I threw WebMD under the bus, but this message is everywhere. Fortunately, there are doctors who believe we can be trusted with the truth, and I want to reference Professor G and his MS-Selfie newsletter, which you can find on Substack. I mean, I totally think you should check out the MS-Selfie newsletter anyway. In particular, he recently wrote an article called Sudden Death in MS is very, very rare, so rare that we're not even going to talk about it. He states that actually three quarters of deaths in people with MS are due to complications of MS. It feels like semantics to differentiate death by MS and death due to complications associated with MS. But here we are, we need to clarify what those complications are. Does that number surprise you, Alex? Three quarters?
Speaker 2:
I mean, no. I think the last few years has created a buffer for me to say no, whereas maybe beforehand I'd be like, wow, that is a lot. But now, I mean being immunocompromised is a thing that we all learned a bit more of during the pandemic, so maybe not now as much as it might have been beforehand. I read the article and the most common causes are things like aspiration, pneumonia, sepsis from a UCI, pressure sores from not being mobile, a pulmonary emboli from lack of mobility, falls, head injuries, Covid, and other infections from being immunosuppressed, and being on those medications that do that sort of thing. A lot of these feel like reasons older people die anyway, that might sound wrong. Everyone could probably learn how to age better and prevent some of these risks.
Speaker 1:
Yeah, I think that it's... Well, that's like the harsh truth. We all die from something, but the reason it's problematic to say, don't worry MS isn't going to kill you, is because the things we need to do to make that true need to happen from the start. I mean, when we talk about those future seven years that we feel like we don't care about, it feels like then it's a problem for future me, but actually it's the things that we do now that are going to impact those later years.
Speaker 2:
Yeah, I guess it's a bit of a butterfly effect. Is there maybe a threshold where it's too late, like you've missed the boat, you've had progressive MS or some of these risk factors? Is there a time, a trigger for that as a way to recognize it?
Speaker 1:
I think the most important thing that you can do to prevent becoming disabled, which is what invites a lot of these risk factors, is to get your MS under control with a highly effective disease modifying therapy as early as possible. But like you said, some of us may have missed the boat on that. I'm definitely in that camp, and it still feels like these are old lady problems for me to worry about in the future, but I am ambulatory and I mean, I'm not athletic, but I am still walking and yet I've already had to deal with pressure sores. I've discovered that there's a very fine line between, I'm not paying $300 for band-aids, and here's the deed to my house, fix my fucking pressure sores.
Speaker 2:
I mean it's harsh, but you were dancing. So is dancing a good way if you are ambulatory to avoid pressure sores or anything? I guess what comes-
Speaker 1:
Are you talking about the ten-second video I posted of me in Mexico, supported by a pole and just moving my arms a little bit?
Speaker 2:
Yeah.
Speaker 1:
Is that what you're talking about?
Speaker 2:
That's what I'm referring to.
Speaker 1:
Sure, if I did that all day long... Okay, pressure sores, they can kill you, they're painful, they're terrible, be on top of them. I mean, all the stuff they say, diet is important, get enough protein, get up as often as you can, change positions. I don't know. I'm bony and it's still a problem for me. These are things that you feel like you're trying to do everything you can to get them under control, but you do really have to be on top of them.
Speaker 2:
So one thing that we've found pretty useful, Nicole, she got this sweet deal from, I can't remember where, but she ended up being able to get a new watch, an Apple Watch or whatever that has... She uses the alarms for taking meds, and then she also uses the alarm. There's health related app alarms to get up and move around. And so she's getting up out of her chair more often and she's walking around the apartment more often. And so things like that, technology, if you are able to get ahold of it, can be extremely useful. I guess another extremely useful piece of technology, not high-tech, but a bidet, which we talked about in the Christmas episode, I think.
Speaker 1:
Yeah, I mean you think of urinary tract infections, UTIs, whatever, bladder issues can also lead to sepsis or kidney problems. They can be really serious, and so part of managing that, mitigating that, is getting your bladder issues under control as early as possible. We did recently invest in the bidet and I am recommending it for everyone. But you know what? I think drinking a lot of water is also a good hack to get you to get up and move more when you have to get up to pee.
Speaker 2:
Yeah, we have a liter of water sitting in the kitchen, it's not far, but we have to actually get up to get it, so you're right about that. I think one of the things from that, the Dr G episode that I mentioned earlier was aspiration pneumonia, that was a new thing for me. Does it create problems with choking, you said?
Speaker 1:
Yeah, so one of the symptoms of MS can be difficulty with speech and swallowing, also something that I've experienced, and if you aspirate enough food and you're sedentary, that can lead to pneumonia. It's awful. Yeah, I don't know. What do you do to prevent that? Chew your food. Actually, you can get thickening agents. If this is a symptom, then you really do need to have it looked into. I did have a little bit of physiotherapy for this symptom and it felt like, yeah, chew your food, stop eating like a Neanderthal, don't eat laying down. Basic stuff.
Speaker 2:
I saw thick water in the store not that long ago. I didn't know what it was for, but I guess this is the kind of thing that you would use it for, right?
Speaker 1:
So interestingly, I was noticing that when I did tend to choke, it would be on very viscous things, mostly a gin martini would just slide into my lungs, and that actually can be part of the problem, like water... So these thickening agents, I guess, can signal your body to swallow them a little bit better, if that makes sense. I'm not putting a thickening agent in my martini. I think I just have to be really mindful.
Speaker 2:
A thick French 75, I don't know if that will fly.
Speaker 1:
No, definitely. I'm not ready to go there.
Speaker 2:
So I think... Well, preventing falls is another one, but I think we maybe covered that with the dancing as well, but is there-
Speaker 1:
I definitely don't think we covered that with the dancing. That was a risky proposition because, yeah, I don't really advocate for being supported by a pole when you are a bit unstable. I feel like we don't always take falls seriously enough. The WHO, the World Health Organization actually reports falls as the second leading cause of unintentional injury deaths worldwide, and that's a scary number. But the reason why I think this needs to be something on your radar really early is that things like steroids can contribute to increased risk of osteoporosis in people with MS. So again, another old lady disease that I also already have. I had a fall from standing last year and fractured my spine, and that can be a very downward spiral slippery slope.
Speaker 2:
Yeah, I feel like some of these things are really emotionally heavy as well when they strike, right? This is now your body is saying something and then how do you respond emotionally?
Speaker 1:
Yeah, it's really hard. We talk about the mythical seven years, maybe it's five, that get knocked off the life expectancy. Again, it's changing because of the use of highly effective DMTs, but I've said this before that MS does feel like it has me aging in dog years. These are the health problems that we associate with very older bodies than we are having to confront them earlier. But osteoporosis is preventative and I don't think it's on enough MS radars early on because the prevention for that is something you have to do really early on. Steroids increase the risk. A lot of MS diets are dairy free and I have learned how hard it is to get enough calcium from kale. These are things that you want to have on your radar.
Speaker 2:
Blood from a stone, I guess.
Speaker 1:
Yeah.
Speaker 2:
I know, again, what we're talking about in this episode can bring people to a bit of a darker place, I guess. Is that something we should be confronting?
Speaker 1:
Yeah, I think that it's irresponsible of us to ignore that suicide risk in the MS population is twice that of the general population. One thing I've learned throughout having this disease is how much more I can handle than I thought. I still sometimes wonder about my threshold, and I think it's fair to have the occasional existential meltdown, I think it's normal, but I think there's definitely a difference between periodically freaking out and living with the profound feeling that you can't go on. 50% of people with MS will experience a major depression, which we know is a major risk factor for suicide. I think it's incumbent upon us, those of us with MS and the people that care about us to recognize depression and seek treatment because it's something you want to have on your radar so that you're not caught off guard and you know where to get resources and help.
Speaker 2:
I'll admit myself, from my personal experience, I have my first one-on-one therapy session scheduled for next week. I don't know if I'm going to touch on MS stuff right away, but it's one of these things where I even have a difficult time, I think, recognizing whether I'm having a darker day or something like that, but I wanted to give it a try. I have friends who are encouraging me to do it, and I think it's good for everyone to at least explore that, whether they think they're dealing with it or not. But yeah, I mean I'm sure I'll flush it out, but I just wanted to put it out there because I think it's responsible, like you said, for people with MS and the people that care for them to explore these options.
Speaker 1:
Yeah, I love that, Alex. That sounds like self-care. I think we live in a culture where we are conditioned to think we should never have negative emotions, that we shouldn't entertain any dark thoughts or feel anything less than positive, and that's not accurate. But I do think it's important to be able to tease apart the difference. And also, who doesn't love an opportunity to just talk about yourself for an hour?
Speaker 2:
Yeah, I like the idea that you could just unload all of your emotional baggage onto a nice... What's... A bipartisan person, for lack of a better phrase. I mean, having shouldering all these issues can be lonely, can create loneliness, and loneliness shortens lives. This is like investing in your social capital as if it were a drug or another type of addiction, I guess, or issue-
Speaker 1:
Yeah, I love that you brought that up. Loneliness has been in the news regularly recently, and we know that it does shorten lives, so yeah. If you have to think of making time with friends and family as a prescription for wellness, then do that. But you really do need to prioritize it as much as you would prioritize eating well and exercising or getting enough sleep. It's really, really important, and it can be hard.
Speaker 2:
Yeah, there's a lot going on. I think that most at risk are younger males within the first five years of diagnosis to experience this sort of stuff, which to me suggests these deaths don't necessarily correspond to unbearably high levels of disability and may be preventable if modifiable and transient factors like depression are treated.
Speaker 1:
I totally agree. Yeah, that is key. And in fact, get all of your symptoms treated. When I was researching for this episode, I found that bowel dysfunction is a predictor of suicidality, which on the one hand I feel like that's shocking, and on the other hand, I'm like, yeah, I get it. But that speaks to get the stuff treated that can be treated. I know it can feel like there's nothing that can be done or that you're always at the doctor's office, but these things really do matter and they shouldn't be deal breakers. I want to talk about medical assistance in dying, which is known as MAiD in Canada where it's legal, because like suicide, we cannot ignore that for some people, MS becomes so disabling, that life becomes unbearable. The most recent statistics from Canada say that MS accounted for 14% of the MAiD deaths that were attributed to neurological conditions. So to pretend-
Speaker 2:
That's high.
Speaker 1:
That this is not, not happening.
Speaker 2:
Yeah. I think we could talk about an entire... We can give a whole episode to MAiD if we really tried, but the purpose of this conversation is to acknowledge that MS can end this way, and these deaths need to be counted and not ignored.
Speaker 1:
Yeah, I think we do a disservice to the community when we don't acknowledge how hard this disease is. We need to do a lot more to support people living with severe MS, and we need to direct our research funding dollars to getting this thing cured and particularly finding ways to address progressive MS, especially. Do you guys have any longevity life hacks? What approach do you and Nicole take?
Speaker 2:
I think like what I said earlier, we want to understand what is going on, what are these symptoms, how do we prevent them on a day-to-day basis? But on a day-to-day basis, we just try to live our lives as anybody else. Read or go for a walk or go to the park. We just got one of these sunshades, obviously, to ward off the sun while we're at the park or at the beach or something like that. We want to just enjoy life as anybody else would. And maybe on a day-to-day basis kind of ignore the big picture to a certain extent because it can be scary, but when it comes to it, we do try to hit these sort of things head on. And I think communication is probably a good medicine in a relationship-wise. I mean, how about you? How do you extend your view?
Speaker 1:
I think I try to be very proactive. I think about the future. I am very much about living for the day and in the moment. Carrie is different. I think he thinks more about the future, like, we need to save, and MS is going to be really expensive. I'm like, no, let's set it on fire. I want to die with nothing in the bank.
Speaker 2:
I've mentioned in many episodes, I think my aunt has had MS and I've known that my whole life, and I think watching her move through life, she's a strong lady and she's independent to a point and she's gone to work and she's retired and she does all this stuff on her own as well. I mean, using her as a template, and again, it's different for everyone but her, she's always been generally positive and she's always laughing and she's telling jokes, and I think that is a good model. Again, if you pay attention to your own unique symptoms and unique situation, that's one thing, but in the long run, life is going to be life and that's, you've got to just live it for yourself.
Speaker 1:
Yeah, and I think again, it's not about fixating on any of these risk factors, it's just about controlling what you can, and being proactive and investing in your wellbeing and then living your life. I don't want the takeaway from this at all to be like, oh my God, freak out. But I think it's not fair to say those seven years at the end are the shitty ones anyway, so don't worry about them. I don't know. My parents are in their seventies. Seven years now, feels like a long time. I don't want to be ripped off of those seven years, and so I think it's important to do all the things that we can to make sure that we get those seven years and that they're seven good years. We just need to know what the shit is that we need to troubleshoot. That's all, I'm just saying, trust us with the information because that three quarters of people with MS dying due to complications of MS is a number that I think we can influence and bring down.
Speaker 2:
Being informed is the biggest help. Day to day you got to do your own thing, but being informed is critical. So if you feel like you got to talk to somebody or if your doctor's telling you something, you feel like they're sugarcoating it, tell them to just shoot it straight. I think that's the critical stuff there, is getting to know your version of MS and how you can treat it day to day while looking at the bigger picture and enjoying your life.Speaker 1:
Well, nobody gets out of this life alive. There are things we can do to maximize the quantity and quality of the time we have. We'd love to hear about your longevity life hacks. What are you doing to invest in your future wellbeing? Look after yourselves troopers. MS is hard.
Thanks for tuning in and if you found this episode helpful, please like, subscribe, all the things. Talk Suicide Canada provides 24/7 free confidential support to anyone who is in crisis, and can be reached at 833-456-4566. If you're in crisis, please seek help.
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