JB “So we breathe out lift that leg and breathe in as you come down. And as you do this, just try and think does this feel the same as when you did it on the other side? Is it different or do you have a bit more movement or do you find it a bit more difficult?”

JB What we find with Pilates, what we learn is that our bodies are often not balanced, sometimes one side is stronger than the other and what we have to work on is balancing ourselves so that we’re totally balanced.

EK And so we can become balanced through doing Pilates?

JB Yes. Because what I’ll be saying to you is if that leg feels weaker we do more on that side so that you strengthen that side up. But because you never normally put yourself in these positions, your probably not aware that one side perhaps is weaker than the other.

EK So is this going to help keep us mobile because our brain is making connections.

JB Yes, and what it’s also doing is working on your core strength. It’s really important for people with MS that they have strong core strength as this means that their arms and legs will work much better. So we’ve worked round your abdominals, we’re working round your pelvis and that’s all part of your core strength. It’s working muscles in a small way, but you can feel that muscle starting to work now.

EK Yeah I can actually..SC Yes.. EK I’d quite like to stop, SC My glute is burning!

JB Let’s rest from there! OK. We’ll straighten the legs out

EK So do you find then that people who do Pilates if they come in and they’ve got impaired movement in anyway that through doing this they become more mobile, it eases (their symptoms)?

S Yes. Because we’re looking at where their imbalances are so we’re improving balance. We help people identify where weaknesses are and try to improve them.

EK Oh, right, so you can actually do targeted exercises (JB Yes) to increase mobility?

JB I would look at someone with MS and do more work in a specific area because that’s where they’re particularly weak, but with a lot of people we just do core exercises because they’re good for everybody.

What we usually say at the end of the class is ‘you should feel taller and lighter and much stronger within yourself’. And that’s what most people will tell you at the end of the class. That’s how everybody feels, whether you have MS or not. But you genuinely have that feeling because you’re working all those muscles so that you’re feeling stronger in your core, which makes you feel taller and lighter.

SC I’ve found that it also really helps with my balance. (JB yes.) I was a dancer back in the day, but I feel my balance has been impaired on my feet, but pilates has actually really, really, helped. It kind of re teaches (JB Yes) you how to balance.

JB Most people don’t check their balance, so once we get you standing and doing the balance work you become aware of what your balance is like.

EK. Right. So actually what you’re doing is you’re increasing your own awareness of your body (JB. Yes). You’re more kind of alert to what’s going on.

JB. You’re more aware of how your body works: what works well, where you’re slightly imbalanced. Most of us are imbalanced: I’m imbalanced, because I broke my leg a few years ago on the left side, I know I work harder on that leg and I have to constantly work on that because, as you find, you lose it, and as you get older it becomes much more challenging. But for people with MS we can work on the bits that we need to improve, and that helps them in their everyday life. We take some of the exercises and work specifically on single ones that target areas we need to improve.

EK And I suppose also feeling positive about it all, that’s going to help with things like the fatigue, the depression and all the (JB. Yes) other symptoms. So actually this is core (SC yes) (JB yes) and you’re gaining a sense of control over you’re outcome.

JB. Because if your core is stronger then you should find it easier to do things and you’re less fatigued, which makes you feel better and you improve as you go through things like that.

SC And also somebody once said to me that if you are having to balance or something but there’s like a blockage somewhere, then your brain will reteach your body to balance in another way. (JB Yes) So you reteach yourself through a slightly different path. It means you’re always growing, always moving and you can improve.

EK You’re creating new neural pathways. (JB yes) in order to do what you’re used to doing. (JB.Yes) (SC Stronger).

EK So what causes the tight calves?

S. Partly because the muscles around there aren’t working as well as they should do, so they tighten up quicker. If we can stretch them out muscles work much better when they’ve got proper length. If you can keep the length of the muscle then the muscle will work better.

EK Is that because the nerves aren’t working properly, the messages aren’t getting to the muscles? Is that what it is?

JB. Yes, partly, the muscles become weak because of the condition.

But people need to learn the different levels of the exercises so they can tell the instructor, ‘No I just need to do this level, or that’s too advanced for me.’ Everyone must work at their own level which is really important as well.

EK That’s brilliant, as that would enable people to join classes in the community. Because MS can be so isolating can’t it? So if you’re doing this and learning your own level, you can go into the community..

JB Yes. It’s really good to join a class with other people and doing that in your community. That’s overall what we’re trying to achieve with this at Revive MS Support.

SC I’ve had it, this is my third time, (M Your third time) and big gaps in between. (M Have you enjoyed it?)

M Do you know the principles of it, how it works?

SC Kind of, but I don’t know the connection with the MS and a couple of people have said to me that actually it’s a really beneficial thing to do.

M. Right. It is. There are reflexes in the hands and the feet that correspond to parts of the body. By stimulating these reflexes you bring about relaxation in the body.

M. For MS Reflexology works on two levels.

• It works on an energy level
• It works very much on a practical level and the skeletal system

If you are walking and perhaps you walk with a stick or you’re unsure or maybe afraid of falling, what happens is, you look down.

• You look down and as you look down your point of balance goes.
• Your head goes forward, the shoulders go forward:
• You turn in your toes and the arch on the inside of your foot curls:
• And the big toe curls in – and your big toe is the toe of balance.

So in actual fact what happens is instead of steadying yourself you’ve more chance of falling.

M. As we work on the feet we open out all the reflexes and the toes.
We straighten out (where they’ve curled in). Quite a lot of people just walk out much straighter than they walk in.

M. But it also helps with the fatigue the digestive syste, with constipation, in the bowel, because by relaxing someone, the organs in the body function better.
SC Wow.
A lot of people with MS suffer from tension; from anxiety and if we can relax them and relieve that, we separate the symptoms of MS from the symptoms of anxiety. Because anxiety causes a lot of secondary symptoms – and reflexology can treat these too).

So really those are the main benefits of reflexology.

SC It’s very nice having it done as well. It’s a win win!

M Yes, it is, it’s lovely!

SC. Really lovely!

M Some people fall asleep when they’re having it done. And some people don’t.

SC yes.

M. Some people have very painful feet and other people have literally no sensation in their feet at all. And it brings back the sensation in the feet. It’s a temporary thing, because unless you have reflexology every day it works for a few days and then the symptoms come back again.

Reflexology has been sanctioned since 2003 by the NHS as beneficial to symptoms of MS. Tai Chi is another one that’s actually been sanctioned. I think there’s an article in the Guardian about it. But not many people know that!

SC Most probably it introduces people to it who might never have heard of it.

M Yes it does

M. Reflexology and complimentary therapies now are quite popular, but for many years nobody had heard of reflexology. But I was speaking to a lady who’s American and she was telling me that when her grandmother had polio in the States, and they used reflexology as part of the therapy. It was used as well as physio, so it’s interesting that it’s been used for quite a while.

SC Yes, and for other ailments.

SC. It’s very hard, I’m trying to keep awake. (Laughter)

M. In reflexology you’ve five zones that actually reflect parts of the body. So for instance this would be the spine, (points to a line from the big toe to the heel). Because that’s the central part of the body and you would work out from the spine. Your left foot represents the left side of your body. So this would be your spine and we’d work across so this would be the shoulder, (points to part of foot by little toe) so it’s as if you’re coming out across the body like that.
SC Oh, Wow, and that’s the other side.

M. Yes and this right foot would be the right side of the body. So all the organs in the body on the left side of the body are reflected on the left foot and all the organs on the right side are reflected on the right foot.

SC Amazing.

M I have done this for many years and I never cease to be amazed what actually is reflected in the feet. It’s quite amazing. Quite amazing.

SC. So it’s important to look after our feet.

M. It is. And it’s important too to be aware if you have tension or a sore part in your foot, it’s good to go and find a reflexology chart and see where that refers to in the body. Quite often your foot is telling you something.

M How are you finding the pressure? It should just be a firm pressure. If there’s any tension then that would indicate tension in the equivalent area of the body.

But it doesn’t mean there’s anything seriously wrong. It’s just an indication of where you hold your tension.

And sometimes too, if your posture changes a little, you can imagine if your feet support you then if your posture changes a little it’s going to put pressure on different areas of the body.

What this does is help to bring the feet back again, to a sort of normal position, which helps the posture and also the other pressure points.

SC Cos I’ve got sensitive soles of my – I mean I’m loving it – but I’ve got sensitive soles of my feet. Which is why I cannot walk on pebbly beaches without looking ridiculous.

M. Well the Chinese, what they do, they have paths, I don’t know if you’ve ever been to Hong Kong at all, but in Victoria Park, they’ve got paths with rounded boulders, not big boulders, little ones, and they walk along that and what they’re doing is actually opening up the feet. They’ve done it for centuries.

SC Yes It’s amazing watching them do Tai Chi in the garden at the age of like 80 and 90.

M.I know. Wonderful.

I was amazed at that in China actually because you go in the countryside here in the fields and there’s nobody in them. And in China there’s like two little people pruning their trees or tending to their fields, whatever, and they are working all the time and where we have a tea break, they have a tai chi break because it releases all the tension in their muscles etc.

SC. Makes sense, doesn’t it?

M. Yes.

SC, It’s very, I’m finding it very relaxing.

M. It is. Quite often people fall asleep.

EK Tom I think it’s fair to say that we know more about the moon than we know about our brains, so can you tell me what my brain actually is?

TP In the context of brain health and preserving the brain in conditions such as MS, it’s probably best to think of it in terms of an organ, like your heart and lungs, something you can look after, something you can do something about to keep it healthy and exercised. (EK Oh, that’s good!)..

TP So the brain is an incredibly complex organ. It’s got roughly 86 billion neurons. That’s about 11 times more neurons than there are people on this earth!

EK Wow… What’s a neuron?

TP A neuron is a nerve cell that carries an electrical signal, like a wire carrying information, – and that (for example) is what allows you to think.

*These neurons use up quite a lot of energy.

*The brain only accounts for about 2% of body weight but it uses about 20% of its oxygen and blood.

That’s important to remember when you’re thinking about brain health.

EK So my brain is a bundle of neurons (that needs oxygenated blood to function properly).

TP Yes.
The brain is a massive interconnected network of nerve cells.
There are a lot of other cells supporting the nerve cells but it’s probably worth thinking of the brain more generally as tissue when we’re thinking about how to keep it healthy.

When we’re thinking about Multiple Sclerosis, and the symptoms that you experience from Multiple Sclerosis it’s worth mentioning two types of nerve cell.

*We’ve got the motor neurons that will tell parts of your body what to do
*We’ve got the sensory neurons that run right the way out to your extremities.

So for instance if you picked up a hot coal the nerve endings in your fingers would send a sensory signal to your brain and your brain would process that information with this great big network of interconnected neurons and then send a signal, the motor signal, back down to your hand to release it.

In a condition such as MS those signals can get interrupted.

TP The brain is under attack in MS. There’s a response from your immune that says, wrongly ‘there’s something foreign sitting inside my brain’ And it attacks the nerve cells in your brain. Very specifically it goes for the fatty sheath that wraps around these nerves. If you think of a nerve as an electrical cable the fatty sheath is what insulates it.

EK The myelin sheath.

TP The myelin sheath. This attack strips away the myelin sheath around the nerve and that means that the electrical signal can’t travel quite as well as it did before and if that attack continues the sheath can be removed all together and the axon which is the middle bit of the nerve can break and the signals that are going between your brain and your extremities no longer work properly.

EK Right.

TP So in Multiple Sclerosis, the symptoms you experience will be dependent on where this damage is occurring in your brain. The hallmark is lesions, areas of inflammatory attack going on in the brain. Depending on where these lesions occur will dictate what kind of symptoms you have.

It’s not just the brain: it’s the spinal cord and the optic nerve as well. So that’s what called your whole central nervous system. The CNS.

EK And nobody knows what causes the attacks in the first place, do they?

TP a) No, that’s the bad thing about MS, without knowing what causes it it’s difficult to prevent it or to cure it.

b) But the treatment situation and what you can do to preserve your brain health has improved incredibly over the last 20 years.

EK Are there things that I can do without getting in heavy medication to actually help keep my brain healthy? To stop the attacks?

TP. Yes. MS Brain Health is an initiative being led by a group of international experts that recommends what people can do in order to protect their brain and lead a brain healthy lifestyle.

Drugs will help to reduce the frequency of relapses and they may slow disability But there are also lots of other things you can be doing as well.

TP It’s important to remember the brain is an incredibly adaptive organ. It can to some extent help itself – and this concept of brain health is to preserve as much brain tissue as you can. It’s designed to prevent unnecessary accumulation of disability, unnecessary relapses.

But it requires everyone, that’s the people with MS, their carers, and the whole healthcare system to understand there’s a sense of urgency. The whole brain health initiative started with a report called ‘Brain Health:Time Matters’ LINK

It was emotive, designed to inject a sense of urgency into everyone to realise that if you take action you can prevent this unnecessary loss of brain tissue, you can shut down the disease activity.

21.17. The things you can do have a catch phrase: “Preserve the Reserve”.

EK What does that mean?

TP The brain has a natural buffer, as we’ve already said it’s got vast amounts of neurons, and it can also repair itself.

When we were talking about the immune system’s attack and how it stripped myelin off, there are also these other cells called oligodentrocytes. (Link to Anna Williams interview). They provide a support function and try to put the myelin back onto the nerve cells and repair them.

So the brain is always actively trying to repair itself. You lose tissue when it gets over-run.

EK So if I’ve got disability say in my leg, then my brain might find another way, might find another neural pathway, if that’s the right term to make that leg work again, to stop that disability.

TP. Spot on. What you’re talking about is the cognitive reserve. This is the flexible part of your brain that can rewire and adapt if part of it gets damaged.

TP There’s also the brain reserve itself. Put simply this is literally a function of how big your brain is. So some lucky individuals are born with bigger brains than others. Evidence shows cognitive dysfunction such as problems with memory, concentration, processing of information happen later on in life for people with bigger brains. You’re either born with a big brain or you aren’t. And the more you’ve got, the more you can afford to lose.

TP But whatever the size of our brains, we all have a cognitive reserve. And that’s the flexible element, something we can do something about.

* See below for an extraordinary example of this flexibility, of how the brain can re-train itself.

EK So I’m losing brain cells because of the MS, but what you’re saying is my brain can repair itself and also even if those cells die off I can find different ways of maintaining my health, my mobility, my cognition, all the things that are impacted, because I’ve got this reserve?

Possible Image? https://www.ecosia.org/images/?q=images%20neurologocial%20reserve#id=7C87BE21FEFF7DD4555934AC35C9E7961EB811BC

TP. Yes. The current thinking is that the brain carries on growing ‘til it reaches it’s maximal size at around 40 years of age then in everyone regardless of whether you have a condition such as MS or if you’re completely healthy your brain slowly starts to get smaller as you age.

In a healthy person it’s about 0.1 to about 0.5% a year and in a person with MS who’s completely untreated it’s somewhere around the region of the upper end, so 0.5 to about 1.35% of the tissue’s being lost every year.

So the key is to try and slow that down, and that applies to healthy people as well as to people with MS.

EK Right, so how can we all help to keep our brains healthy and keep our reserves, because that will keep us active mobile…

TP Well there’s quite a few things you can do to protect this reserve. It’s all about adopting a brain healthy lifestyle and anyone can do this.

TP It’s not rocket science and probably actually a little bit boring. It’s all the things you can expect, so, keeping yourself active and fit is a very good idea,

EK Is that because of the oxygen the brain needs?

TP Yes. We go back to the brain being an organ and it’s an organ that uses a lot of blood and oxygen. If you can improve the blood and oxygen flow to the brain, you’re going to have a healthier brain.

Conversely and this is probably the bit that people don’t like to have to deal with, there’s things that you can avoid that would definitely improve your brain health.

The no. 1. Is smoking. The evidence shows in Multiple Sclerosis, that people who smoke will lose more brain tissue faster, they’ll have more relapses, more disability progression. So that’s one thing that can be cut out immediately to improve brain health.

TP. Same again, I hate to tell you these things, but alcohol as well. An excessive amount of alcohol is associated with earlier death.

TP So just going back to the exercise again. The exercise is specifically aerobic exercise, something that you feel. But not too much. Because too much in someone with Multiple Sclerosis could actually make the symptoms worse.

So be as active as you can and keep doing it. I think the really interesting part of brain health is the bit to do with exercising your brain.

You may have heard that it’s almost like your muscles. You can exercise your brain with mental activity. The evidence from studies says that it’s ‘effortful and successful learning’ that will preserve brain mass.

EK So is that doing the crossword?

TP That’s one way. Information, the way that you think is stored in the network of connections between all these billions of neurons. These connections are reinforced by having a particular thought. And if you don’t have a particular thought then the connection loses its weight. Studies are showing that several thousand neurons every day are added to your brain but a big chunk of those will die off within a few days unless they’re used. So it’s similar to exercising your muscle. Use it or lose it.

So you need to put some effort in and you need to keep doing whatever it is.

EK OK so it might be like reading, doing a crossword, just keeping engaged, active, alert.

TP Yes. It’s all about thinking. About using the brain.

EK So if I’m having say for example a positive thought, and I keep having positive thoughts, then I’ll engrain a kind of positivity about my life and condition, I’ll create that in my brain which will help me deal with whatever it is that I’ve got to deal with.

TP Yes. That’s certainly the theory. In artificial intelligence where we try and model computer brains on human brains, you have this architecture that’s like neurons between the connections. And the more you use those connections the stronger they get. The less you use them, the less strong they get.

EK So I need to keep exercising. I need to keep positive, and what about my diet? Do I need to be sensible and not eat loads of fat, sugar, all the stuff that we’re told. Lots’ of green things…

TP. Well, anything that’s going to make your body more healthy generally is going to make your brain more healthy. So having a healthy balanced diet is obviously an important factor. I think we’ve covered what you should do which is:

Physical exercise: mental exercise.

We’ve covered roughly what you shouldn’t do which is:

Smoking. (especially detrimental for people with MS)

Drinking too much alcohol. Excessive amounts of alcohol have a detrimental effect. There are recommendations about how much alcohol a man or a woman should drink in a day.

There’s also something else that’s important.

This is the importance of adhering very strictly to treatments. And I’m not just talking about the treatment that is for the MS itself.

It’s also critical to keep up with any other treatments that your doctor has prescribed for you. So, if you have, for instance medication to lower cholesterol, – so statins, or you have high blood pressure and you have medications to lower that, or you have diabetes and you need to take insulin – You need to make sure that you adhere to these medications as well.

It all goes back to the brain being an organ and an organ that uses a lot of blood and a lot of oxygen, all these other conditions if they’re not managed very carefully in addition to the management of MS, they can also have a bad effect on the MS and worsen it.

TP So the one example that’s always made an impact on me, is the case of a forty four year old French civil servant. I don’t know if being in the civil service had anything to do with this, but he was married had two children and when he was young he had a condition called hydrocephalus which means that he had water building up on the brain. That was drained in his childhood and at 13 they took the stent out and he continued to live a normal life and then at 44 he came into the hospital and he complained that his legs were weak. So they ran a brain scan, you’ve probably heard the term MRI (magnetic resonance imaging), and they were absolutely amazed to find there was this great big hole sitting in the middle of his brain!

There was about 25 -50% of his brain left and he’d been operating absolutely fine for the last 30 years on only this tiny part of his brain. The reason I’m saying this not to be alarmist, it’s just to show the brain can adapt massively to damage.

EK So basically he had a circle of brain and in the middle was water. And it had no impact on his life that he knew of until he turned up with a bit of numbness in his legs at the age of 44?

TP Yes.

EK That’s extraordinary.

TP He was just below average intelligence, but he functioned normally and yes, so I guess perhaps what had happened is the brain had had time to adapt as the water slowly built up in his brain over 30 years and it had remodeled itself so that parts of his brain that would have dealt with one particular function like walking or drinking had remodeled and other parts allowed him to carry on thinking. So that’s an incredibly extreme example of what could happen.

EK Right. Tom you’ve just mentioned about MS treatment.

TP: The central tenet is to preserve as much brain tissue as you possibly can. And one of the ways of doing that is to treat MS promptly, to stop that tissue from being lost, in the first place. So if you treat early the tissue isn’t going to disappear.

EK: So you’re saying for MS I need to get effective treatment early to kind of halt the disease in its tracks, or slow down the rate of relapse.

TP It’s important to treat early to preserve your brain health. That’s what this MS brain health policy is about

EK: OK: And there are loads of things that I can do for myself, such as watch my diet, (link to alkaline diet Ross Bridgeford https://liveenergized.com/) do things that keep my brain healthy. Keep it oxygenated and the blood flowing by keeping as active as possible. By doing things that exercise my brain and stimulate my cognition – like learning a language or a new instrument, or a crossword, or reading.

TP, Yes.

EK: By not smoking, drinking sensibly, and getting exercise, again, keeping my brain oxygenated. So shall we go? How fast do I have to walk in order for this to be aerobic?

TP As much as you feel comfortable with.

Image.. Still from film.. TP EK walking away from camera…

*An extraordinary example of how flexible the brain can be.