Welcome to the Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.
Phil O’neil:
Hello, I’m Phil O’Neil. Welcome to the MS Australia Raw Nerve Podcast, and our guest today is Jen Willis, a former principal. She’s 50 years of age. She has three children, and she’s about to embark on a 51 day expedition to the Himalayas to climb it. Nice to have you here.
Jennifer Willis:
Thanks very much, Phil. Good to be here.
Phil O’neil:
As somebody that suffers from MS, I have similar symptoms as you do. Poor temperature regulation, fatigue and dizziness, I would’ve thought probably don’t go hand in hand with climbing a mountain.
Jennifer Willis:
Yeah, yeah. Thankfully the dizziness for me has come not as an everyday thing. That’s more of a, if I was having a significant relapse.
Phil O’neil:
Sure.
Jennifer Willis:
Knock that one off the list for the mountain. The other ones make it challenging.
Phil O’neil:
Do you have issues, as a result of nerve damage, with colder temperatures?
Jennifer Willis:
Yeah, for me, I have, well, actually, I thought that cold was more bothersome for me, but having just been over in the Himalayas, I realize that it’s the overheating, which seems so backwards in the mountains. But when you’re layered up in a pile of down, you can get pretty hot pretty quickly, and it’s having to manage that is surprisingly what’s going to be my challenge, I think.
Phil O’neil:
If we can go back to the early days of the diagnosis, you actually were diagnosed, I think I read, 10 years before they actually, well, they think that you had MS for 10 years before they actually diagnosed that that’s what it was.
Jennifer Willis:
Yeah. I was living in Colorado and I’d had my third child. I had some horrible dizziness and some double vision. I had an MRI taken, and they thought at that point that it looked like MS but I had a spinal tap that was clear, and so that reduced the likelihood. Between that time and getting my diagnosis, I lived in back in Australia, so I was in Colorado, back in Australia, in Vietnam, back in Australia, in South Korea, and then came back to Australia and I finally got my diagnosis. I think one of the factors might have been different neurologists, different MRI machines. But assumptions early on after they thought maybe not MS, maybe not sure, vasculitis and small vessel disease both sort of considered before it was finally worked out it was MS.
Phil O’neil:
Yeah, of course, as we all know, it’s a roadmap and a jigsaw as well. What were the symptoms like leading up to the eventual diagnosis.
Jennifer Willis:
Then, it was my memory that sort of led me to start really investigating again more. I was working at a big international school and I was managing, overseeing the risk management, global travel, service, learning, outdoor education, a few other areas. I was always really good at doing a lot in that way. I just noticed I was having to keep more and more and more lists. I thought, “Oh, that’s a bit unusual for me.” Now, my memory’s significantly worse. But, yeah, it was the memory, really, that jolted me to go and get things checked again.
Phil O’neil:
Okay. When they gave you the diagnosis, did it come as a surprise to you, and what did you do immediately after that?
Jennifer Willis:
Actually, when it was mentioned again, that it looked likely I might have had MS, my response was, “Oh, thank God, that’s amazing,” because I’d lost my dad to brain cancer and the look on the… I’d had what seemed like they thought could have been a mini-stroke, just a visual problem, and I’d had an MRI, and the look on the doctor’s face when he came in to speak to me, I thought he was going to tell me I had a brain tumor. And so, when he didn’t, he just looked so devastated. He knelt down in front of me and he put his hand on my knee, and he just said, “Are you okay?” I just thought, “Wow, I’m dying.” And then, when he said, “We think you might have MS,” oh God, I was so relieved because I knew that the difference between an aggressive brain tumor and MS was huge.
Phil O’neil:
Of course. Yeah, yeah. A lot of people have had that reaction after getting diagnosed as well. For a lot of people it’s like, “Well, thank goodness we can finally put a label on this because for years, no doctor’s been able to actually tell me what’s wrong with me and now, finally, I can actually label this and know where to go from here.”
Jennifer Willis:
Yeah, absolutely. One of the things that was sort of quite nice, but interesting, is one of my girlfriends was so apologetic because for years she thought I was really just a hypochondriac, and there was always something wrong with me. She thought, “It’s all in your head,” and it turns out, I hear other people say this, turns out it was.
Phil O’neil:
And so, going forward from that day, what changed immediately for you?
Jennifer Willis:
Well, actually, and I probably need to be more clear, that my actual official diagnosis then came after that with a neurologist. That was with a GP and then with a neurologist. I think, what changed for me was when it was first mentioned that I might have MS, I was living in Colorado and I was looking up at the Rockies and I had this new baby, and I’d always, no, that’s not true, since I was a little girl, I dreamt of mountaineering. I was looking up these mountains going, “Wow, if I have MS, how am I going to do that?”
At that point, I made a commitment, “Right, if I ever get diagnosed, I’m going to go straight out and climb these mountains and I’m going to fundraise for MS research because it’s going to be the advances and the medications that make a difference in my mobility, hopefully, and the prognosis of an actual diagnosis.” As soon as I did get that diagnosis in 2018, I went on Facebook, I’ve just been diagnosed with MS. I am going to learn how to mountaineer and I’m going to fundraise for MS research. Watch this space.
Phil O’neil:
Excellent. It’s not just a metaphorical climbing of a mountain, but a literal climbing of a mountain as well.
Jennifer Willis:
Yeah. Yeah. Absolutely. Dreams grow when you start living them. I think there’s something about you have a dream. You realize that dream in the practical sense, not just like, “Aha, I have a dream,” but you actually live it. And then, you go, “Well, I’m not done living that dream. I want to keep going.” And so, my dream’s sort of taken me from two months in Nepal last year, learning how to mountaineer. I learned how to mountaineer on perhaps the hardest mountain there is to climb in Nepal. That was good, a good experience. Didn’t realize quite how hard it would be, but it was amazing. Built some incredible skills. I raised $10,000 last year for MS research as well. And so, suddenly, it’s like, “Oh, I’m doing this.” And then, it was like, “Oh, but I want to raise more and I want to climb again.” Hence, I’m off to Everest in a couple of months.
Phil O’neil:
When you did the initial posting of the diagnosis on Facebook, what were the people’s reactions to that? How did people react to you?
Jennifer Willis:
I think a mix of things like, “Oh, I’m really sorry to hear this, but of course that’s what you’re doing,” and “Well done on how you’re handling this.” I think, for my close friends, it wasn’t a surprise because that journey to diagnosis, it had been going on for so long. My kids sort of knew that this was what was going on because a few life decisions had been impacted around the thought, “Mum might have had MS.” In those 10 years, I was having symptoms and I had relapses before reaching that diagnosis, so I’d lived with, I guess I’d lived with MS. It just, no one had actually figured out that that’s exactly what I was living with.
Phil O’neil:
You’re stable now?
Jennifer Willis:
I’m not 100% sure, actually. I started on Copaxone just after I was diagnosed and that, actually, I’d had a couple of maybe relapses, maybe two periods of about six weeks each where I had some quite profound sort of dizziness. And then, I was feeling fantastic, and an MRI showed I was getting new active lesions. And so, I was pretty gutted at that point actually, because feeling symptom free and realizing I was getting lesions, it was quite confronting. And so, I swapped medications. I moved on to Tecfidera, and then onto another sort of same chemical medication, but called Vumerity. And so, I’ve been on that one now, maybe 18, or two years. I’m not 100% sure because my memory has just been bothering me significantly the last few weeks. But I’ve got shingles at the moment too. And so, it’s hard to know what’s… Am I just a bit, my body’s-
Phil O’neil:
Exactly. I’ve spoken to a few people about that with MS, you never know whether or not it is MS or not, and you tend to give it more credence sometimes than it deserves. But I imagine, you strike me as somebody who is very proactive in all areas of your life. When you found out about the diagnosis, did you then start Googling, and what interesting things did you find out that you didn’t know about?
Jennifer Willis:
Yeah. I guess, even when it was mentioned 10 years ago, by the time I was diagnosed, I could probably have done a neurologist job apart from ordering the scans. I guess, I mean, a couple of things that I learnt. In 2008, when it was first mentioned, my ex-husband’s cousin who lived in Colorado, was working alongside some people that were researching in MS. And so, I knew that there was a lot of very active research going on. I mean, I guess one thing is, back then, I thought maybe they were closer to a cure.
And so, now looking on, what was that now? 2008, 15 years later, I guess I understand there’s still not a cure, but perhaps sometimes I’m a bit surprised going, “Wow, it’s incredibly hard.” I think one of the things that I’ve learnt is that connection with Epstein-Barr virus has intrigued me because I got quite sick in my 20s, and they’d mentioned then they thought it could be something where I could end up in a wheelchair. And so, I sort of wonder then, was that early MS? Was it just glandular? Was that doctor well ahead of his time in thinking that? I guess, probably one of the things, too, that surprised me, that fascinates me, is the ability to start to recognize other medications that can be used across the spectrum of different illnesses. And so, I’m quite interested in exploring Mavenclad after I get back from Everest.
Phil O’neil:
Okay, yeah, sure. Yeah. I think I got to the stage where, after about the initial five years, I stopped trying to find that magic potion as well. I got to the stage where I went, “Okay, I’ve done everything that I possibly can to change the trajectory of this within whatever capacity I’ve got, and I’m now just going to see what happens,” because there is so much misinformation out there as well and you really do become an expert. As a layperson, you become an expert in something that you have an absolutely… As I’ve mentioned to people before, I’m a disc jockey. I can tell you Jimmy Barnes’s new record, but I don’t know anything about the brain and things like that.
But it’s incredible how, with the education that you provide yourself, how you can really get more of an understanding of MS too. Also, I think the misinformation is something that you really have to put to one side, don’t you?
Jennifer Willis:
Yeah. I think, one thing I like, and I don’t know how much you’ve experienced this with doctors, is that they use Google as well too now, and particularly younger doctors, is there’s a bit more humbleness and a bit more ability to go, “We don’t know everything.”
Phil O’neil:
I found that too, yeah.
Jennifer Willis:
There’s a wealth of information out there and they’re very accepting now of the self diagnosing individuals going in to a doctors. I’ll go in and say, “Look, I have MS. I’ve had these symptoms. I’ve Googled all of this. I don’t think it’s the MS. I think it’s X, Y, Z.” Instead of going, “Well, I’d rather you not get on Google,” they’re grateful. Yeah, I think it’s-
Phil O’neil:
I was surprised by that too. Because I’ve been in a similar situation where I’ve gone in and I’ve sort of thought, “Oh, I’m going to say something but, gosh, these people have been to university, but I’m going to say something,” and they go, “Oh, really?” And then, I found that the more you share the information with the doctor, because there are so many things that they also have to look at. For them, MS is just one thing. They’ve got everything that they have to keep across, and there is so much new information that’s constantly updating from myelin repair and all of these sort of things as well that, in a sense, you do have to, not necessarily educate your doctor, but keep your doctor informed as well.
Jennifer Willis:
Yeah. I guess, they learn through their patients as well as through the research. And so, I’ll think of that next time too when I’m feeling a bit guilty thinking, “Now, I’m going to gift you with some information today.”
Phil O’neil:
Well, that’s how I felt. I thought, “Well, who am I to be telling you?” But it’s terrific that you’re able to be able to do that. Oh, let’s talk about the climb. How high is it?
Jennifer Willis:
Everest? 8,848 metres. Well, I’ve read some 8,849 because I guess it’s growing.
Phil O’neil:
How long’s that going to take, and what kind of training have you done for this?
Jennifer Willis:
The expedition itself is two months. And so, training wise, people ask me about my training. Before the last expedition I did, I followed, there’s a program, a couple of guys set up something called the Uphill Athlete. And so, I followed their training program and that was a 24-week Everest training program. You’d understand, anyone with MS would understand, I fell off the wagon a few times with the training. And then, I got COVID while I was on one of the peaks. I summited a peak at six and a half thousand meters with COVID.
Phil O’neil:
Wow.
Jennifer Willis:
My thought was I’d do that expedition and then come back and rebook to go and have a go at Everest, sort of building off the base that I’d formed having just been in Nepal for a couple of months. Now, I’m looking at a couple of things that I need to build up so I’m not doing a formal training program so much this next couple of months.
I’m looking at building up muscle and how I can build up muscle as quickly as I can because I’m not very big, and so losing muscle will be a big part of this next trip. Building up my aerobic capacity. COVID in the mountains at altitudes have knocked that back a bit, so building that back up. And then, someone was asking me recently for some tips, and one of the things is I come from probably more naturally slender sort of, not athletes or anything like that, sort of quite unathletic actually, but naturally slender and I think I have very natural endurance, and a strong mind. I’ve already got, for me, perhaps those key things. It’s just adding, putting on some… Thinking of a car. If you went, “Look, the car runs pretty well. I’m just going to put on some bigger tires and bigger something else on the engine or a louder exhaust,” or hopefully not. [inaudible]
Phil O’neil:
Of course. Well, obviously, with MS, with balance and things like that and sensory symptoms and things, I imagine there’s a lot of overcompensation that you have to do as well in order to look for possible things that may happen.
Jennifer Willis:
Yeah. And so, a real lesson for me on that last trip was I was really worried about getting cold. For me, and I’m not sure for you, for me, if I get cold, it’s a bit like if my mind was a jigsaw puzzle being put together, someone’s just shaking a puzzle a bit and some of the pieces aren’t fitting together quite so well and I just feel a bit clunky. I was worried about being on the mountain and getting cold. Because of that, I wanted to make sure I had a Sherpa by my side, things like that.
Ama Dablam, the peak that I was on, has some incredibly strenuous climbing in different spots. And so, in my mind, I didn’t think so much about that. I thought negative 35, up at altitude, harder for your body to stay warm and I don’t want to get cold so big down suits, everything. What I found was I’d make these strenuous moves and, bang, I’d be so overheated. And then, I’ve learned of Uhthoff’s Phenomenon. Have you heard of that?
Phil O’neil:
No, I haven’t. Could you tell me please?
Jennifer Willis:
Yeah. Googling, going, “What’s going on with me when I got so hot.” I’d be on the mountain, I’d suddenly get really hot, and then I’d find that I was having to pee. And so, it was as if I was the Energizer bunny, climbing, climbing, climbing and someone drained my batteries completely and made me pee.
Phil O’neil:
Right, yeah, yeah, yeah.
Jennifer Willis:
And then, I’d cool down and I’d come back into feeling, “Oh, I’m okay. I’ll keep going,” but it was quite frustrating. I ended up peeing the down suit and things like that as well on the first climb, so then I had to be, sorry, Gabby. That was a borrowed down suit. I hadn’t told her that, if she ever hears this.
Phil O’neil:
Got some bad news for you.
Jennifer Willis:
Got some bad news.
Phil O’neil:
Now, it’s a way to find out.
Jennifer Willis:
Oops. Off to the cleaners. I think down suits get peed in a bit at altitude. Anyway, this Uhthoff’s Phenomenon though is, basically, in neurological illnesses where when the body overheats, different things happen to it. I haven’t read the mechanics of why, but double vision or blurred vision, sudden urinary urge, incontinence and instant fatigue. And so, this next trip, Everest is an easier climb in the gradient and a steady gradient. Ama Dablam is very steep in spots. This next climb, I’m planning on keeping my body cooler.
Phil O’neil:
Right. Excellent. It’s funny because you know mentioned that the weeing, I’ve always been somebody that needs to go to have a wee every two minutes ever since I can remember. For me, that’s not that new. But the dichotomy for me is with a lot of people that suffer from heat symptoms with their MS, I don’t have that. I go to the gym and I do very hard classes and I’ve never had an issue with heat. But only recently, I’ve had an issue with cold and I can’t go into the ocean at all if it’s, what used to be mildly cold wouldn’t be an issue. For me, now, it really affects me and I say to my wife, “This is freezing cold,” and she’s in the water going, “No, it’s not.” I’m going, “Yes, it is. How can you not realize how cold this is?”
Jennifer Willis:
Yeah, it’s crazy, isn’t it, how things change? Because I was the same. Cold for me. I was like, “Got to stay warm, got to stay warm.” For whatever reason now, the heat’s killing me as well. Got to stay moderate.
Phil O’neil:
Well, when are you off?
Jennifer Willis:
Early April.
Phil O’neil:
Early April. Oh, terrific.
Jennifer Willis:
Expedition starts on the 6th of April.
Phil O’neil:
There’s a website where people can find out more information about this?
Jennifer Willis:
Yeah. Yes. My website is just www.helpcurems.com. The reason it’s helpcureMS is because this whole journey for me has also been about following my dream to climb, but also raising awareness and actively fundraising for MS research.
Phil O’neil:
Which is terrific. There’s a couple of things that you’ve said that really resonated with me, and one is that no two snowflakes are the same. I always find that really interesting because that’s the same analogy that you could use or perhaps a motto that you could use or metaphor for MS as well. But you’ve thrown in something that’s of interest to you and that would be the snow.
Jennifer Willis:
Yeah, yeah, yeah. That’s very true.
Phil O’neil:
The other one that I saw on your website, and I really like that too, was again, using what you believe in terms of what you want to do. You quote Edmund Hillary on your website and you said, “It’s not the mountain we conquer but ourselves.” That really resonated with me because, you’re right, every day is something that you have to achieve personally for yourself with this.
Jennifer Willis:
Yeah, absolutely. And so, I’m heading over to attempt to summit Mount Everest, and it’s exciting. It’s amazing if I can do this. Just going there is making history, and I often think his story, her story, it’s making her story. It’ll be an Australian first as the first person with MS to attempt Everest. I didn’t summit Ama Dablam, the mountain I was just on recently. I made it six and a half thousand meters. My Sherpa got cold. He’s climbed Everest 20 times, but I was moving slower than he’d anticipated for the clothing he had. I gave him some hand warmers and we headed down from six and a half thousand meters, and I was tired. Mountaineering’s really, really tough. I’d been going in the dark at extreme altitude and extreme climbing for hours and hours at that point.
Phil O’neil:
Of course.
Jennifer Willis:
But I felt like I was as much a part of the summit success because, for me, I just looked on going and I have one photo where I look back and it’s just surreal that I was there. It doesn’t actually feel real when I look at what I climbed. If you look up Ama Dablam and you look up things like Camp Two or Mushroom Ridge, and you see where I was, it was phenomenal. I really felt like I had summited. Before I headed up on that expedition, I saw a painting in Kathmandu, and I’ve wanted to climb this mountain since I was 25. I saw a painting in Kathmandu and I said to the guy in the store, “If I summit, I’ll come back and buy that painting.” When I was coming back down from the summit, I thought, “I’m going to go back in and buy that painting because, my God, here I am at 51 with MS and I just did that. I’m at six and a half thousand meters on one of the hardest mountains you can climb and I was within a few hours of the summit”
Probably too, I knew I could have kept going, but I knew it was the right thing to come down. It is. It is the metaphorical summit. The notion of a summit is so much more than a photo of you standing somewhere, which is what I thought I wanted, meant nothing compared to a sense of personal empowerment and feeling inspired by my own self.
Phil O’neil:
Yeah. Yeah, yeah, yeah. We all have mountains to climb, but you’ve actually taken it literally. Of course, helping to provide funds for MS research, which helps all of us as well. But, also, your story is such an inspiration to us as well. Thank you so much for that. Thank you so much for sharing your time with us today on the MS Australia Raw Nerve Podcast.
Jennifer Willis:
Yeah, absolute pleasure. Thanks for having me.
Voiceover:
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