Alice's Story: Climbing With MS

Date of Interview: 08/06/2023

Will (W): So, when were you first diagnosed?

Alice (A): So, I was diagnosed at 15. I went to the doctor with my mum at probably 13 or 14, to rule out MS – because my grandma had MS. I had a few funny symptoms, that I called ‘wobbly eyes’ at the time, but basically, I struggled to focus my eyes on reading or like small things... and I also had numbness and tingling in my right hip and that affected my balance.

I was sent to a neurologist in Nottingham, and he said something like "just to be on the safe side, we'll send you for an MRI" – which we weren't concerned about it at all, but when we got the MRI results, I had some lesions on my brain, which means scar tissue. For most people, MS attacks the brain and spine, but luckily for me, it's only attacking my brain for now. So, I went away and came back for another scan after six months to monitor progression.

W: You're still quite young though, so how long ago was this?

A: I got the first scan results in January of 2019, and it's quite interesting, because my nan who had MS died, and I think I went to her funeral something like five days before I got my scan results that said I potentially had the same thing.

W: Did the second scan show progression?

A: It showed that there were more lesions, and then before I had a third scan… in November, I became ill, and I lost all coordination. Within a few days, I lost the ability to walk. I had complete double vision, and I couldn't string a sentence together at all. I couldn't really think properly.

W: How quickly did you manage to recover from that?

A: So, I had an intense round of intravenous steroids and that helped a lot. I think it was five days of steroids... and by the end of that, I was able to walk assisted and my vision was coming back. I gradually recovered and I don't have any lasting symptoms, but I did for a long time, probably until like last summer.

W: I mean we only met climbing this last winter really... so when did you start climbing? And was that one of the first trips you went on?

A: Um, no, I did my gold D of E residential in North Wales in July of 2021 I think… so, I had just turned 17, and I got into climbing, and my first experience of climbing outdoors in Snowdonia.

W: What a place to start! How do you manage your symptoms when climbing?

A: So, I've like tried a couple of different medications. First, I had a twice a day oral medication, but I struggled with the side effects of that. Then, I moved on to an intravenous, which was an infusion every six months, and that’s helped me a lot. But people tend to fail that after two years and I've been on it for coming up for three… Um, so it's not really a long-term solution, but there's not a lot of research on paediatric MS, because it isn’t that common.

W: No, absolutely, I think it only came up in our conversation because we were talking about acupuncture for climbing injuries…

A: Yeah! I've always been quite into yoga and meditation, and all that stuff. So, we tried a more holistic approach. I've had reflexology and acupuncture, and both of those have helped with pain management so much. Like, it was awesome to get feeling back in my hip!

W: Have you ever had a sudden pain or gone completely numb whilst climbing?

A: Yeah, having any kind of pressure around my hip can make it go completely numb. So, having a harness on, does do that sometimes, but I've gotten quite used to it, so it doesn't affect me.

W: Do you have plans for treatment going ahead?

A: Yeah, next year I'm having a year out from my photography course… so I'll finish all disease modifying treatment hopefully forever and then next year, or not next year, I'm starting chemotherapy in just two weeks. And then, I'm having a stem cell transplant, also called H S C T, and the idea of that is to halt progression.

W: How are you feeling about that?

A: I'm nervous for it. Definitely. Um, but I feel like it's kind of my only option because my options are to stay on the disease modifying treatments, which eventually won't work and will damage my organs… Um, let the disease get worse, which isn't really an option because like that's how it was for my nan when there weren’t treatments available and obviously, she didn't do well with that. Like, the whole time that I remembered my nan, she was paralyzed from the neck down and blind, and obviously I don't want that. Then the third option is to have this treatment and it's going to be hard to go through, but it should hold progression. Then I'll hopefully not have to always take medication.

W: Have you got any plans or ideas in mind for what you'll do on the other side of treatment?

A: I mean, back to university… Um, I don't really know. Just live my life more. Yeah.

W: It already seems like you do so much, and that’s such a brilliantly nonchalant response.

A: Yeah. It just used to affect me massively. Like, I used to not be able to walk for more than 20 minutes or anything, and I would really struggle to do everyday tasks, but I'm tremendously lucky now that it doesn't affect me too much and that I can do pretty much anything that anyone else would.

W: What is it that you would want someone reading this interview to get out of this conversation?

A: I would just like people to have more of an awareness of paediatric MS. So, how MS can affect younger people.

W: I think we did speak about your mum running an awareness campaign for stem cell transplants too, right?

A: So, basically the doctors have agreed that it's the right treatment for me, but the NHS won't pay for it unless I have like a higher level of disability, but obviously that's risk because that disability can last. So, if I was to wait for another relapse, I could permanently lose my vision or ability to walk or something like that. So, we're paying for it [HSCT] ourselves, but it's £85,000… so, we’ve needed to do some fundraising.

W: Just to double back, you said you are studying photography… so, when you finish your treatment, where do you see yourself going?

A: So yeah, when I’m done with chemo and finish my degree… I'd really like to travel with my photography. I want to go into photojournalism. So, documenting people's stories and people's lives in different places around the world. Just live, you know?

W: What a final line… thank you, Alice.

​