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Real Voices: Making MS more visible

Amy Newton was diagnosed with multiple sclerosis at the age of 34. In this week’s Real Voices, she describes how she has thrown her efforts into volunteering and activism, and how she wants to improve visibility and understanding of this condition.

The road to diagnosis

My symptoms began with extremely sharp pains in my head. One side of my face went numb, and I thought it was a trapped nerve. My walking went funny, and I felt drunk despite having had no alcohol. I was also suffering from fatigue. I left it for a while before seeking out the doctor, as I didn’t want to make a fuss, but eventually my husband dragged me to out-of-hours at the GP. Initially they thought I’d had a stroke, and a bleed on the brain, so they sent me up to the hospital. The doctors there did a CAT scan, and then they told me they thought it was just a bad migraine. I went home, and continued to get steadily worse, I was just feeling awful. The doctor then made me a neurology appointment. The neurologist got me to do loads of tests, such as touching each fingertip with my thumb, which I couldn’t do. I was declining so quickly at this stage that over the course of this one appointment, my ability to walk got worse. The neurologist sent me for another scan, an MRI this time.

The MRI results came back and showed patches on my brain, so the neurologist decided to admit me to hospital. I’m a behavioural scientist, so I knew that patches on the brain was not a good sign. I went into the ward, where they did lumbar punctures and so on. At this point they were still entertaining the possibility that it was a stroke. I was taken down to the stroke ward, and I couldn’t eat because I had such extreme vertigo. Even though I was absolutely starving, every time I raised my head off the pillow I felt incredibly dizzy and nauseous. They were about to start the stroke treatment, when suddenly there was a huge commotion and my doctors were told not to as it’s apparently very dangerous to start stroke treatment if you haven’t had a stroke. I was moved up to neurology, and had a load of blood tests. I was in hospital for around three weeks, and I fought to leave because they weren’t actually doing anything apart from a bit of physio. By the time I left I was able to walk using a walking stick, so they allowed me to go home. They told me what I was experiencing was an “neurological isolated incident”. Within a week, my eyes blew. At first I thought it could be motor neurone disease, due to my lack of mobility.

I went back into hospital again. This was the first time that I had the notion that it might be MS, as the areas of inflammation I had on my brain are one of the key indicators of it. The doctor said “I’m not a neurologist but I think you’ve got MS”. I got released from the hospital again, and the next thing I know I get a phone call saying that they’re starting me on medication. It was to be regular injections that I would have to learn to do myself, and I had a phobia of needles at the time. They went through all the logistics of these injections, and it was only right at the end of the call that they asked if I had questions, and I said “Wait, what are you actually treating me for?”. They still hadn’t said what was wrong. The person went “Oh, it’s for MS” in a really dismissive tone. That was how I learned I had MS at the age of 34.

Since diagnosis

I had to leave my job as a behavioural scientist, because my memory is so limited. When you work with young offenders, which I did, it’s very important to remember everything that they tell you during their cognitive behavioural therapy. You have to take note and remember what they told you, and what they didn’t tell you, and remember their body language and cues and so on. If you can’t remember these things, you will not be able to progress that young offender’s therapy. I just wasn’t able to do that anymore. 

MS is known as the “snowflake disease” because no two cases are identical. Everyone with the disease has a different experience, and is affected differently from others. The main ways in which it affects me are the fatigue and pain. If I didn’t have to deal with those two elements, I’d be fine. I could deal with the lack of mobility. Also, my MS is an invisible disability, so people don’t realise that I’m ill, because I look normal. 

Moving into volunteer work

I’m not someone who can just sit still and put up with it, so I quickly joined the MS Society Committee in Fife. My main motivation was that I needed to make more people aware of the reality of living with MS. My kids were in primary school at the time, and I didn’t want their friends thinking I was a drunk because I was stumbling when walking. I had the idea to develop a MS kit, a kind of suit that would simulate the feeling of having some of the primary symptoms of MS.  I had to base it on my own symptoms really, because as I mentioned, everyone with MS experiences it differently. 

To replicate the fatigue and heaviness, I added weights to the arms and legs of the suit. This was a really good indicator of how exhausting it is just to move your limbs every day. I also experience a loss of sensation in my limbs. I can still feel but not as much as I used to. So I added gardening gloves to the suit, because when you wear them you can only feel a small amount. During my time working with young offenders I had used medical-grade beer goggles, and these were perfect for replicating my optic neuritis. It’s a very simple kit, but it’s incredibly effective. I got some friends with MS to try it out, and they said it was absolutely spot-on. I took it into primary schools, along with my 12 wooden spoons for the spoon theory exercise. The spoon theory is that each spoon represents a unit of energy. Others can replenish their energy throughout the day, but people with MS have a certain amount of energy at the beginning of the day, which then decreases with every activity you do. So even just to get out of bed, that’s one spoon of energy gone. When you get dressed, that’s another. I went through the morning taking spoons away with the primary school kids. By the time they got to lunchtime, they’d run out of spoons. They asked what happens then, and I said you can borrow spoons from the next day, but then you’ll have even less energy tomorrow. When you completely run out of spoons, that is what you call an episode. The spoon theory is a really useful way of explaining MS. I’ve also been able to show the MS kit to medical students, and they try it on and I get them to do everyday tasks, such as shaving or drying their hair. It really gets the message across to them, of the reality and difficulty of MS. My local MSP Willie Rennie has also tried the kit, he wore it for a full hour and said it was absolutely awful and he was feeling the effects for days afterwards.

I became the branch coordinator for the MS Society in Fife. When I took over, we had a load of money in the bank, because the committee wasn’t spending it. I began thinking of ways we could spend this money. When I was diagnosed I was 34, which is young. I am still young now at 45. The exercise classes for people with MS were quite boring, and clearly designed for much older people. I felt old doing them. My village hall had a burlesque chair dancing class, and I went along to a demonstration. I thought it looked like great fun, so I asked the instructor if she could adapt a class for people with MS. She agreed immediately, and said they could alter the moves in the routine to make it accessible. So we started doing burlesque chair dancing taster sessions for people with MS, and everyone who came absolutely loved it and had a blast. The classes were full of people with all different levels of ability. You could not tell the people with disabilities from the able-bodied people, because the teacher was that good at offering alternative moves suited to every single person. 

We also do fun days every year for people with MS and their friends and family. We arrange to go to Craigtoun Park and pitch a massive tent, where we have food and entertainment for everyone. We’ve also adopted a train station, Leuchars Railway Station, and we held an art competition for primary school children to display art there. A local Fife artist who herself has MS replicated the winning pictures onto hardboard and we displayed them by the planters on the platforms.  

We’ve also set up a scholarship with Fife College. Many people with MS can’t do the jobs they did before, so quite a few consider going back to college to retrain. So I got in touch with the Fife College scholarship team about starting a scholarship for someone with MS to study there. I said the only criteria is that they reside in Fife and have MS. They argued for more criteria, such as having 95% attendance. I said that there would be no minimum attendance, as MS is difficult enough. Some days the student might not be able to get to class, and it’s not their fault. I also made sure that the scholarship students would have the option to attend class via Zoom. If they want to use the scholarship money for takeaways because they’re too tired to cook after class, or for taxis because they’re too exhausted to wait for the bus, that’s fine. The money is simply to make that student’s life easier, in any way they need. A lovely young man was chosen as the first recipient of the scholarship in 2019. 

Hope for the future

My vision for the future is making MS Society Fife more visible. I want to make more people aware of MS and the experience of living with it. There are still so many barriers for people with this condition. Even tiny things like sandwich boards on the street, which block someone in a wheelchair from getting round them. This is becoming more of a problem, since so many businesses have outdoor seating due to the pandemic. People in wheelchairs struggle to get down the street if there’s seating and tables in their way. In St Andrews, our pavements are really old and craggy, and there’s so few dropped curves around the town that it’s nearly impossible to use a wheelchair. I just want to raise awareness of these issues, and try to make life easier for people with MS. I want to break down the taboo, and let people know that not everybody with MS looks the same. Sometimes you can’t tell a person has MS just by looking at them. A person with MS could look normal to you, but on the inside they feel as if they’re on fire. The way I describe my nerve atrophy pain to the doctors, is that it feels like barbed wire being pulled through your veins backwards. It’s intense. When I’m having an attack like that, my own children can’t even touch me. The lightest touch when I’m in that state feels like a knife going through me. 

I’ve spoken to many young people with MS, such as a girl in primary school who’d been diagnosed. I took my MS kit to her school, just to show her classmates that it isn’t that she doesn’t want to join in and do everything they can, it’s that she simply can’t. The children were so lovely, and they promised to grow up to be a doctor so they could cure me. I want to tell people that you never know what anyone is going through, and you can’t tell if someone has an invisible disability, so please always be nice.