Five Things I Do to Stop All MS Attacks

woman embraces the dawn

I  stopped drinking milk

I switch from cow’s milk to soy.

I was never drinking glassfuls.  I was really only drinking it in two coffees I have each morning and sometimes in a bowl of cereal at night.

I didn’t think it would make much difference but it has made a huge difference.

There are so many kinds of non-dairy milk available now.  Almond milk, oat, pea protein.  There are more types and varieties all the time.

Switching is now very easy. I think it tastes better.

Why no cow?

Cow’s milk has been linked to multiple sclerosis in many studies.

The protein butyrophilin  closely resembles the oligodendrocyte glycoprotein, which covers myelin. 

It’s thought to perform ‘molecular mimicry’ and initiate the autoimmune response that triggers the MS attack.

In experiments, cow’s milk has scarred the brains of rats and also mice in a separate experiment.

This one study specifically finds that:

The demonstration of molecular mimicry between MOG (myelin oligodendricite) and BTN (butyrophilin) , along with sequestration of BTN-reactive Ab in CSF suggests that exposure to this common dietary Ag may influence the composition and function of the MOG-specific autoimmune repertoire during the course of MS.

The Journal of Immunology, 2004, 172: 661–668

That’s reason enough for me to stay well away from cow’s milk. (Doesn’t it belong to baby calves anyway?)

I try not to eat fake food.

Have you ever noticed in a supermarket, you walk down aisle after aisle of edible non-food?

I’m not perfect, but I definitely avoid food that comes in packets and boxes, apart from whole grain food like rice or pasta. 

Instead, my family gets a big box of fresh seasonal vegetables and fruit from a local supplier delivered every Friday night.

Every Saturday morning is a bit like Christmas, seeing what we’ve got in the box. 

Our mission is to eat it all without waste. 

There is loads of colour in this box and eating food with loads of colour is good for the gut microbiome.

Sweets

That doesn’t mean that I don’t enjoy things like cake. I have a sweet tooth, but the less sugar I eat, the less I want.

If I want something sweet, I like home-made things and usually only put in about 1 quarter of the sugar in recipes. I think that’s sweet enough.

Of course, I love chocolate as well. You would think that avoiding dairy means no more chocolate. Wrong! 

Dark chocolate often has no dairy. If the wrapper has a warning that it may contain dairy, I consider it safe enough. I try not to be too obsessive or anal about these things.

Have you ever had good dates? We call them nature’s chocolate. Even the kids. 

 

Vitamin D Tablets

I take extra vitamin D most days. That is, most days I remember. 

 I’ve had a number of blood tests that have showed my vitamin D levels were quite low. 

 

I usually take about 5000 International Units (IU), which is 5 tablets of 1000 IU each and then if I forget for a while that’s okay. It stays in the system for quite a while.

Vitamin D is non-toxic and you can’t overdose.

Exercise

 My two daily goals are to write everyday and to walk everyday.  (These days it is sometimes jog because I am able to run again.)

Exercise releases feel good chemicals that are neuroprotective. A nice hit of endorphins from exercise helps me feel more confident, happier, better organised for the day ahead. It clears the driftwood from my mind.

I tend to exercise for my mental health as much as the physical health benefits.

I get ‘high’ everyday

 This one could describe 15 different things I do to get small and big highs. 

I’m a pleasure seeker. These include doing any of the following:

  • a walk through the bush
  • time in nature
  • classical music
  • sex
  • meditation
  • reading
  • expressive dance routines with my 5-year-old
  • delighting from the blast of a cargo engine with my train-obsessed toddler son
  • family gets me high
  • a good cosmology documentary
  • learning about anything new and interesting that I didn’t know
  • good conversation
  • helping someone
  • music, red wine, movies, books, relationships…

With a family and busy schedule, it doesn’t matter what I do, but I try to fit in at least two forms of getting high every day.

These things all can get me that little burst of happiness we all need.

Why Classical Music and its Neurochemical Cascade is Good for People with MS

closeup violin being played

When I drive along the freeway in heavy Sydney traffic, there are two things I need.

First, air conditioning. I need to stay cool to stay calm. The second thing I need is classical music. The relaxing, Baroque kind. Or piano sequences.

And then I breathe slowly. Everything in the world moves at a different pace — the pace of an elegant French film.

All cultures around the world use music. If you love classical music, you’ll understand why it’s a key part of life, ritual, and enjoyment.

Classical music helps us make physical improvements

Jennifer Powell, A health writer with multiple sclerosis describes music as a “spiritual experience.” I completely agree.

 Jennifer uses music specifically to help her with pain, anxiety and sadness.

Music has the power to transport us. Smell and music have the incredible ability to recapture back to certain experiences and memories. The smell of lavender sends me back  to when I was seven. Music has a similar effect to position me into a time and place, and a positive emotional experience.

There’s a reason for that. The same part of the brain that controls how we process senses is partly responsible for storing emotional memories, according to LiveScience.com

Jennifer describes to Multiplesclerosisnewstoday how she uses the music in the same way “she would use guided imagery”. She follows the melodies and notes. Through the use of a metronomic pattern, she has been able to use music as a therapeutic tool with the aid of her neurologist. This has helped her improve her walking (she suffers ‘drop foot’).

Playing the piano also helps her dexterity. The rhythm and of specifically chosen pieces helps the fingers play more naturally and as one part of a whole body and mind experience. It’s a lovely story.

If you’re like me and can strum a few chords of guitar and pluck the odd note, they say it’s never too late to start learning. But for now, I like to listen.

neon sign reads you are what you listen to

It gives catharsis and positive emotional experiences

Music is delivered via sound waves. When you listen to the sound waves of classical music, it produces dopamine. Classical music and its attendant dopamine elicits a positive emotional experience.

These emotional events modulate cognitive processes. It prevents stress hormones from being released. Like Jennifer, I find music highly cathartic. It helps unclog and re-experience feelings of tenderness, triumph, joy, and sadness. Then release those feeling so I can move on, a little lighter.

Feeling relaxed and unstressed helps our thinking and memory.  That is been shown in a number of studies, including this one.

It strengthens and protects our brains

If you were to put someone in a machine and scan them singing, large areas of their brains activate.

You don’t have to take my word for it. Take the word of Professor Sarah Wilson who is from the School of Psychological Sciences at the University of Melbourne. She scans singers!

“Music activates the reward network. It releases dopamine, the feel-good chemical of the brain,” she says.

Like physical exercise, singing gives our brains a good workout and has neuroprotective benefits.

Listening to classical music reduces the level of blood cortisol. It helps relieve anxiety, relax us, and helps us sleep.  It helps to heal wounds and generate blood vessels.

If you want to start incorporating classical music into your life, Greta Bradman has the answer.

Both a psychologist and radio presenter on ABC Classic shows, Greta shows us five ways we can incorporate classical music into our lives for better mental health and happiness.

ballet dancer

It helps improve sleep and reduce depression

That blessed past-time. I love my sleep. Nine hours a night. Ten, if I can. I’m in bed around 8pm and the kids wake me up around six in the morning. Without it, the black dogs of depression start skulking my way. Let me just go ahead and link the two: depression and poor sleep.

Sleep is one thing so crucial to our mental health. Post-natal depression in new mothers (and fathers) happens alongside  sleep-deprivation. This article  also think so.

I love this study of people with depression who listened to Indian classical music. The findings were that it was as effective as a sleeping tablets.

In a hospital, young people (aged 19 to 28) with sleep problems were split into three groups by a team of nurses.

Before sleep time, one group listened to classical music for 45 minutes. One group had an audiobook. The control group had nothing.

The group that listened to 45 minutes of classical music before sleep had improved sleep quality.  The effect wasn’t shared by the control group or audio book listening group.

Another nursing-led study investigated chronic pain and depression. It found music resulted in lower pain and depression in those who listened to those who didn’t.

*

video game

A lot of people drive in peak traffic listening to music. Quite often it’s ‘chainsaw music’ and driving is a game of war. For a lot of newly licensed teenagers, driving is a video game. There’s adrenaline, speed, and danger.

While the car is transporting them through the city,  the music is transporting them into a heady arcade rally of opportunism and near misses. Respect. I remember zooming around delivering pizzas — our little red Diahatsu Charade pumping with Primus, and a mix that was unlistenable to anyone over 30.

Im just the same now.  Driving is the chance to conduct a symphony.

Fluidly navigate heavy traffic. Make dreamy, drifty lane changes. The tinkling string of green lights. Harmonious blending into motorways.

Two hours on the freeway feels like an energising twenty minutes. Time passes differently. The drama is all there, but it’s gentle. It’s emotional, cathartic, and quite a bit titillating.

The paradigm shift of a tree change

riverbank

Tree change for a higher quality of life

A few years ago we were in Sydney. The traffic woke us. The buses roared below our apartment. We drank too much. We worked too much. One day our rent went up and I said ‘I have a house’.

That’s not to say we passively drift with the breeze and end up wherever we end up. In fact, we have the rudder and direct the flight path with earnestness, as well as lightness.

Right now the carpet is hovering over the meadows of asphodel. By that, I mean we have a heavenly life in a country village. We are two hours train ride from Sydney. We neither make nor need a lot of money. Yet we are veritably bathed in riches.

Revealing you are going

When you first move to the country —outside a metropolitan city — many people you leave behind think you’re having a tree change. And that a tree change is a sign of weakness. And that it won’t last. They don’t say it, because that would be rude. But that’s what they think.

They see the pursuit of a humble, quaint, and frankly boring existence with a backyard. 

They might even become patronising. Couldn’t cope with the city? Toss ambition to the wind and opt out of life. 

People have interesting reactions. Bemusement. Disbelief. Puzzlement. Disappointment. Envy. Curiosity. Rejection.

What you are doing is confronting. It offends sensibilities. It’s a middle finger to the man and the hapless followers of the man. It defies the convention of work. Of pain. Of doing-what-we-have-always-done-because-that’s-what-we-have-always-done.

Have pity.

When you shine a light on dysfunction, it hurts the eyes a bit.

A new mindset

Here’s the thing. Escaping to the country is not a tree change. It’s a Paradigm Shift.

It’s a move from  ‘How much can I make?’ to ‘How little do we need?’

Our two-bedroom cottage is like a mansion to city visitors.

We have trees in our garden. We pick fruit on the street when we leave the house.

We walk our kids to school and preschool.

We make boats from sticks and leaves and race them along the gutters during the rain.

We wear gumboots and go rainstomping.

Everyone knows us by name.

We have all had COVID and received deliveries of cake, soup, craft, puzzles, and chocolate.

There are four cafes in our main street. We go to each of them regularly.

We all sleep in one bed, most nights.

I work from home in the garage. We renovated it and made it a nice little retreat pad. When people stay over, this is where they sleep. There’s a nice little Japanese-style bathroom and laundry on the end, down a step.

This is the meaning of life. And these are kind of obvious things, are they not?

Your values, perhaps for the first time, become very clear. You see what is truly important: Your family. Your relationships. Contributing to your community. Eating well. Love. Maintaining your body in good condition. Allowing your spirit to frequently soar.

But when you’re busy, you forget them. They don’t really land with you. You know they’re the most important things in life in your head, but you don’t make any emotional connection with the truth of it. Until you go slow.

And then you are struck by how much certainty you have that these are by far the important things in life.

In late capitalism, we are kept very busy. Kids. Work. Shopping. Football. Culture. News. We don’t have time to think. We’re very active.

It’s a great gift to yourself to go slowly. Cut back to the basics. Go a bit Walden for a while. The benefits can’t be truly appreciated until you do it.

A Positive Narrative helps with MS

person standing by sea with red umbrella

Quite a few years ago, I had an MS attack and needed a cane to walk. I was devastated. My friend, Bronski, said that was so cool. 

“How is that cool?” I demanded

“It’s sexy”, she said.

“It’s not sexy!”

“Yeah, Melody Gardot,” she stated. “It is!”

Melody Gardot is a sexy jazz singer — to whom I bear no resemblance — who uses a walking cane because of an injury. 

Hm. I thought about it.

I suppose I had the choice. Feel like a young invalid. Or feel sexy to someone.

Okay, I decided. I can do this.

Smile, for heaven’s sake

Here I am, venturing out with my stick. Surprise! I am young! Look, I’m sexy. It was like a joke. Ridiculous. But it made me smile. 

When you have multiple sclerosis, life is uncertain. Every day we wake up, we don’t know what life is going to spray us with. Our default mindset is to be defensive. To feel pessimistic and go negative comes naturally. It’s a self-defence mechanism. 

catching thought. Woman with burry two head montage

The problem with this is if we visualise a bad outcome, we aren’t surprised when it happens. Things that we focus on, tend to magnify. 

Optimism is a learned behaviour. It doesn’t come naturally. We all start with a default mode of negative.

To find Optimism, we have to let our Executive function take control. 

Every day, I need to train my brain to catch itself going negative. Just catch it. Be aware of it. I don’t need to be radically optimistic. Or upbeat. Just catch it. When you get good at catching negative spin, you get good at spinning it too. 

Imagine what good could come out of this? If I can’t change that, how about I do this

I’m not suggesting you are anything other than completely honest with yourself. 

Be your own best friend

What I’m advocating is to be kind and gentle. And be your own best friend. 

What would a best friend do? They would probably make you laugh. And they’d make you a cup of tea. They would rummage around in your junk drawer of negativity and try to find something positive. 

I truly believe that practicing positive thinking makes your life better.  Hand in hand with this, being careful of the words you choose is also important to me. 

Choose your words

For example, I can say my untidy house looks like a disaster. Or I can say the untidiness is irksome. I can say I feel furious about something. Or I can say I feel peeved, a bit put out. Rather irritated. Downplay the drama. Keep cool.

Multiple sclerosis is an inflammatory response. Don’t get inflamed by little things. I try not to flare my temper if I don’t have to. Usually, I don’t have to. 

Storm breaks out before the picnic? We can’t control the weather, but we can buy the most gorgeous red umbrella!

Missed the train? We can’t avoid a two-hour wait at the train station, but, joy! We can get stuck into that book! 

People who take a positive view of things are happier and healthier than those of us who don’t. It is pretty amazing what you can achieve when you back yourself and believe it just might be possible. Even if you only get halfway there, it’s better than the alternative.

It makes you better looking

And another thing. The more I practice a positive narrative, the stronger my resemblance to Melody Gardot becomes. Consider that for a while.

Wild snakes in a lightning storm – what it’s like to go running with MS

road in the forest

As a kid, I liked running. Our street curved around a disused quarry that had an active train line running through and Tickhole Tunnel plunged through the rock.

The smooth asphalt  took a sharp incline up to the busy main road with four lanes of traffic and a red stop sign. From the house, up past the quarry to the stop sign and back was a perfect one kilometre. Sometimes my brother rode his Peewee Fifty motorcycle.

Mostly I ran by myself. Running with rabbits. There were times  I climbed the creamy sandstone rocks and clambered up the flat concrete roof of the tunnel, and watched the trains roar underneath me. I felt like I could have anything I set my mind to. That my creative power was vast.

Old Quarry

I last attempted running in 2006. After work I tied my shoelaces so I wouldn’t trip and ventured onto the local bike path. I’d had a relationship breakup. I wanted to feel that power again — that surge of endorphins, the heart pumping, the lungs working like a machine.

I ignored the tingles — the rubbery electric bands wrapped around my legs. Running made them worse. Stronger.

One hundred metres in and those pins and needles – paresthesia— was like being plugged into an electrical circuit. It would start at the thighs. And then rise every few metres. The top of my legs. My butt. My lower back. My chest. The lesions on my brain and spinal cord were sparking. Wild snakes in a lightning storm. It felt dangerous. My nerves were singeing. Burning. Fraying. Myelin coils cindering toward a time bomb. A tight, full-body corset of electricity around my ribs.

You know, it’s hard to run in a corset. Then the circuit cut out. The signal gave way. In the end it was the knees. They couldn’t remember how to run. Brain and legs in motion were not in sync. I limped home and cried. How do you get over a broken heart if you can’t run wild?

preparing for a run

Ever since then, I’ve replaced running with walking (when I could walk). Stairs (up, easier than down). Bushwalks. Hiking. Some bike riding. Some half-paralysed swimming. That was my salve for a time.

So, I thought, I’ll just try it. I know I can’t. I know the tingles will come and poke me in the ass. I won’t be disappointed. I’ll just have a little go. Because I feel pretty good. There were no lingering tingles anywhere. When I tipped my head forward, my fingers had stopped buzzing ages ago. Good signs. Worth a try.

I stripped down to my leggings, put on a T-shirt, and a jumper, gloves, sunglasses, and a beanie. We are a family of early risers, so no one would see me as I tried running again in the dawn.

I jogged for a hundred metres. This is good, I thought. I’m jogging, nice and slow, but it’s happening. I’m doing this. No tingles.

After five hundred metres in. Wow — I’m doing this. Still no tangles. I’m not falling.

I did the loop through the bush, past the oval — a lake of silver frost — beautiful — heart and lungs labouring — endorphins, feel-good chemicals flooding my brain. One. Full. Kilometres. No tingles.

I decided one morning  would do that every day for as long as I could.  I’ll enjoy it while it lasts.  That was three years ago.  Still running.

How to Survive MRI Scans

person with multiple sclerosis entering MRI machine

When you book an MRI appointment, you are asked a lot of questions. Many of them start with the words “Do you have…”

“Do you have a pacemaker?”

No.

“Do you have any shrapnel in your body?”

No.

“Do you have any bullet wounds?”

So far, so good.

“Do you have any metal dental fillings? Mercury, stainless steel, titanium, gold?”

Just the cheap ceramic ones.

“Do you have any metal fragments in either eye?”

No.

“Do you have a hearing aid?”

No.

“Cochlear implants?”

No.

“Neurostimulator?”

No. 

“Heart stents?”

No.

More and more. 

My better half listens to me on the phone. No, no, no, no. I get a strange look.

One more question. 

“Are you claustrophobic?”

The Magnetic Resonance Imaging machine (MRI) is a two-million dollar deep scanner. It uses radio waves, powerful magnets and a computer to take pictures of your organs.  

Here’s something you may already know. As impressive as that machine looks on the outside is equal to how uncomfortable it is on the inside.

I remove my eyeglasses and step into the bright room. I’m wearing something that closely resembles a tablecloth. There is a bench seat upholstered in white vinyl where I sit. It’s all rather…clinical.

The blue-gowned radiologist approaches. “I’m going to inject you with contrast dye.“

I start thinking of a few favourite movies. Logan’s Run. Gattaca. 2001: A Space Odyssey. 

“You might have the sensation that you’re wetting yourself. Don’t worry. It’s just the dye.”  

Brave New World.

The radiologist straps my legs together with a wide velcro belt so I can’t move. Then Another around my waist. Another across my chest.

1984.

“Try to stay as still as you can.”

A cage is clipped around my head. Vertical bars run in front of my face.

Silence of the Lambs.

The kind of headphones worn by helicopter pilots are placed on top. 

I hear radio signals. They’re in the control tower and talking to me through the headphones. 

Interstellar.

“All okay?”

“Roger,” I say. Don’t laugh. 

A slight judder of the platform and it’s mission ahead. I’m being remotely rolled into the tube. 

I lived in Japan for a year. I never stayed at a capsule hotel. No regrets. Doing it now. I suck in a last breath.

The ceiling is a couple of centimetres above my face. If it were glass, my breath would be fogging it. 

Yes, I can breathe. No, I am not claustrophobic. No, I am not going to have a panic attack today.

The machine kicks into action. Around me there’s a slow-moving orbit of discordant technology—banging and clashing without rhythm. 

It’s an industrial nightclub in here. Thank goodness for the headphones. The music starts filtering through. I gasp and realise I will be subjected to an hour of Milli Vanilli and Rod Stewart. Do I hit the panic button?

 

vivid astronomical photo

If you have multiple sclerosis, you will be familiar with all of this. 

MRI scans are used to diagnose MS. There needs to have been at least two episodes some time apart.

Brace Yourself, We’re Going In

Getting an MRI scan is always a confronting experience. Like a splash at a winter beach, it’s bracing. Every single time I slide into that tube, the same panic follows me inside too. And that’s okay. It’s allowed to follow me in. I realise now that it’s inevitable. As long as it slips back out within a few minutes.

The first few minutes are the key. When you get through those first few minutes, you’ll get through the scan. The panic will come, that wily fox, but he won’t stay for the whole hour. He’ll only stay for as long as you let him. So have a face off. But don’t let him stay. Sort him out immediately.

The last time I had an MRI it was not stressful. It was mostly relaxing. 

 How do you do that? 

I have put together my top best tips.

First of all, I close my eyes. 

Close your eyes

They tell you to do this, but seriously, it’s so tempting to defy a direct order, isn’t it. From my experience, I think it is better to close your eyes. Close them as soon as the platform starts rolling. 

They’ll tell you that the machine is “very close”. What they mean you’ll be inside a hi-tech coffin. So don’t look. I’m human. And humans are naughty, right? So, usually I’ll take a peek. Then regret it. That fox will flash its tail. So close your eyes. Stop peeking.

Breathe slowly

If you’re not into meditation, you don’t have to be. But get into breathing. 

By that I mean breathe slooooowly. And deeeeply. Big deep satisfying lungfuls. The slower the better. Do it and two things will happen. First, you’ll have something to focus on. Second, the oxygen will go to your brain, make you feel good, and cause you to relax. 

On airplanes, oxygen masks fall from the ceiling if there’s a crash. That’s handy if the plane loses oxygen. And it’s handy for the crew who need you not to lose your shit.

Slow, deep breathing helps me do all sorts of things. Like city driving. Stressful work meetings. Difficult phone calls. Anytime I feel rushed or lack control, and want to sloooow it all down. I become my own personal slow coach. I whisper it to myself. Slooooow down. 

That’s it. Close your eyes. Breathe slowly. Remember, people are paying thousands of yen at oxygen bars in Tokyo for this. 

Enjoy the Symphony

For entertainment, you have the band. You’ve got headphones on, but you can still hear the noise. And it’s STILL LOUD.  But that cacophony is NOT from the furnace of chaos. It is not a shrieking fusillage about to explode. That noise is PRECISION ENGINEERING.  All working for YOU. And it’s a symphony.

Pay attention to the sounds. Listen to the distinctive jobs each instrument performs, the instruments they play. Your little factory of tin people on their delicate glockenspiels and giant cymbals. Tap tap tap tap. There’s even a conductor who leads them in.

I listen while I relax. With a sense of detached observation. Is it a melodrama? A musical comedy? Each section has a score. I have heard goppa goppa goppa goppa, and suckitup suckitup suckitup suckitup. 

Mindful ‘Me Time’

The most recent MRI scans I had were totally different from the first few. When they were finished, I could have stayed longer. Seriously. When you have a busy life. Or a business. Or kids. Or all three, you don’t get much Me Time.

I understand you wouldn’t book an MRI for a recreational reason — an MRI is a bit of a hassle — getting undressed and all of that, like catching a plane — but this is your time. There’ll be no sandwiches to make or Facebook Messenger pinging you. For one brief oasis, you will not have to do anything. You temporarily have Zero Responsibilities. Relish it!

The other people in the room will have to and make things work. Your role is simply to lie there and breathe. 

For refreshment, you have air. The air contains oxygen. Rest an elbow at that free oxygen bar. Breathe. 

A shift in perspective changes everything. 

The MRI is kind of like compulsory time spent with you. Only you. (Although you can take an invisible friend.) 

You have a universe inside you. It’s your chance to daydream. Daydreaming makes for seriously creative and productive time!

MRI is time for My Radical Insights or the artful My Ruminations (Interior).

Time to bask in the glory of being You. Lucky thing! You get to be You. Feel your power. 

Despite my dislike of the MRI experience, I say go in with a sense of adventure. I mean, you have to, don’t you. And you have to laugh at the situation.  

I’d love to hear your thoughts about MRI scans. 

Tell me what you do to get through them, or what you think of when you’re in there

My Story

Danielle Spinks-Earl

My name is Danielle. I’m 44 years old. I have had multiple sclerosis (MS) since 1998.

MS is an autoimmune disease. The name is a description of the symptoms: ‘hardening of the tissue’ or multiple scars. The causes are not yet understood and there is no known cure. 

When an episode of multiple sclerosis occurs, something triggers an immune response from the central nervous system. For reasons not well understood, the target of that immune response is myelin, which is the fatty insulation that surrounds our nerves to protect them. The effect of the scarred myelin is known as de-myelination. It can lead to all sorts of strange and varied symptoms and interrupt the transmission of signals from the brain to parts of our body.

At first, it felt like pins and needles. They were in tight bands around my chest, and my legs. The symptoms faded over several months but never entirely went away. I had an MRI scan. It showed demyelination. Nothing was diagnosed. 

A couple of years later, an episode of optic neuritis left me close to blind for two weeks. Pictures of my brain were clipped to a lightbox on the wall. The grey brain matter of my brain was covered in what looked like white finger prints. It was typical of Relapsing Remitting Multiple Sclerosis, my neurologist said. “Textbook case.”

Since my diagnosis, I’ve been in hospital four times with severe attacks requiring high doses of intravenous prednisone (a corticosteroid) to calm the inflammation.

There have been so many random acts of disability I’ve lost count.

Paralysis on one side of my body a few times. Vertigo (urgh! Like being on a yacht in rough weather for days). Blindness (fortunately not for too long). Difficulty walking (often). Loss of taste and smell (once). Burning sensations. Pins and needles (I could write a volume on that). Tightness, weakness, balance problems. Whenever I tipped my head forward, I would get a buzzing in my hands and fingers. I’ve also had a disability permit for my car. And been very worried about my future. 

Initially I had decided not to take any of the disease modifying drugs because I thought there were not enough benefits to warrant the side effects.

After about 12 years, the course of the disease seemed to change. My attacks became more severe and more frequent, so I began a relatively new drugs glatiramer acetate (brand name Copaxone). I took this for 18 months but had so many attacks during this time, I eventually decided to stop.

Along my journey I have talked to different people with MS. I searched for different things to try, drugs, acupuncture, anything. 

MS is a harrowing disease. It’s completely unpredictable in terms of what’s going to happen to you. And it’s isolating. Nobody else can truly understand what it’s like to be in your skin. The pain is not only physical, but existential. Every time you have an attack, you don’t know if you’re going to get better or worse. 

Today, I now manage my ms entirely through diet and lifestyle. 

Specifically, I have adopted a vegan diet with seafood. I’ve quit dairy, and added meditation, and plenty of exercise.

sitting at fortress 12 Great Wall of China
You can buy a T-shirt if you get this far. Fortress 12. Great Wall of China, March 2019

It’s eight years now since my last MS attack. When I tip my head forward, I no longer get any buzzing sensation in my hands. Recently started jogging, something I didn’t think would be possible again.

I’m not saying that I have cured my MS, or that I have even stopped it. All I am saying is that I have never felt better.  I wish someone had told me this 20 years ago, because it would have made such a big difference to my mental health and my entire approach to life.

If you have MS, my purpose is to show people with MS that a positive future lies ahead. You’re not alone. There is evidence to support what I have done.

Living without multiple sclerosis is possible. Your quality of life, symptoms, and the course of your disease can all be controlled if not massively improved through your lifestyle.

 I want to share what and how I have done it so you can too.

Be well.