S8E15: Physiotherapy for MS: fatigue, mobility and movement – Webinar highlights

Jody Barber (00:00)

I would say some complementary therapies that might be worth exploring, might be massage, those touch therapies, myofascial release type massage, and or acupuncture to have a look at, because they work on the connective tissue as well. So acupuncture has a higher evidence base for support with pain relief. If it’s the pain and the soreness and the discomfort, but you’re going, yeah, but I still exercise, but it’s still uncomfortable. The other thing, is more a movement therapy, like exercising in water, where you’ve got the analgesic properties of the water that might help make it easier to move.

 

Overcoming MS (01:14)

Today’s episode features audio from the Expert Insights webinar, Ask Jody, your chance to speak to a healthcare professional about living well with MS, part of the Living Well with MS webinar series. Overcoming MS facilitator, VickieHedge, alongside myself, Regina Beach, interview physiotherapist Jody Barber about living well with MS.

 

Vickie Hadge (01:39)

We’re so pleased to be joining, you today’s session with Jody Barber, physio therapist, yoga teacher and co-chair of therapist interested in multiple sclerosis. My name is Vickie Hadge and I’m an OMSer and trainee program facilitator living with MS. And I’m joining you today from Connecticut in the United States.

 

In a moment, we’ll be welcoming Jodi and my co-host for today’s webinar, Gina Beach, to the virtual stage.

 

Gina Beach (02:06)

Can you just briefly go over your areas of expertise and maybe where your interest in MS came from?

 

Jody Barber (02:14)

So my personal journey as a healthcare professional with MS has been over 35 years. And when I was reflecting this, it’s been, it’s quite poignant because 35 years ago, it seemed to be that people with MS weren’t given much hope, weren’t given much kind of really attention in the field of rehabilitation. And I was curious about why can’t, why are we told we telling these people can’t do anything to help them? You can always help somebody.

There was a lot of query about whether exercise is damaging, if it’s helpful, and a lot of unknowns. And this is with MS and with neuromuscular disease, my other area of interest and expertise. And so we were a bit cautious, or therapists were cautious about doing too much because you might make their fatigue worse or something like that. So I was fortunate to work at a Specialist Hospital in London, around the advent of the first beta interferon double blind randomized controlled trials. So it was very, very, very exciting to be around at that time. And at the same time when other things like chili peppers for managing the bladder and spastic bladder and also intrathecal baclofen. So all of these other things to support disease modifying therapies and also symptoms were kind of emerging.

And with that came this sense of hope and more therapy surrealism, you can help rehabilitate someone So over 35 years, I worked in specialist center and then I worked in a community team while I brought my family up for 23 years. And with that, I was really privileged and still see some of those clients to my family’, you grew up with people from point of diagnosis to in some cases, a more advanced stages of disease. I feel like I’ve had a real lived experience as a therapist of supporting people, but also educationally I’ve been hugely supported by the MS Trust. There’s a lot of support for therapists in educating. And that’s really evolved over those 35 years. There was very little understanding. So I’ve been, and now I’m part of it’s quite funny, I’ll teach on courses about how to become an expert in MS to newer therapists and I wasn’t privileged to those courses. We were gathering that evidence as we went along but we were there as the new therapies and things were emerging and learning, well you can, what’s the best exercise for fatigue, what’s the best and all these questions have been and still being asked. it’s been a really interesting career and I’ve met and watched people thrive and people survive well and live well to their later stages of disease as well. So it’s very, varied.

 

Gina Beach (05:00)

And I do think this is not a condition anyone wants to be diagnosed with, but I feel very fortunate that I was diagnosed recently. And we do now know that exercise is crucial and is a disease modifying activity. And we do know that there are things we can do for ourselves to live well and stave off symptoms. Is muscle tiredness over time a common MS symptom in your experience? And if so, can physical therapy and exercise help?

 

Jody Barber (05:27)

Okay, so the thing about MS is that, it can affect anywhere in the nervous system, but it often will affect if there’s damage to the myelin and even if that’s repaired a little bit and your symptoms may, say you may have had numbness or a bit of weakness and that may have repaired or whatever.

The myelin sheath, is responsible for that fast conduction of nerves. And it’s often those long nerves down into the legs where people notice it. And it is one of those, people say, well, you’re walking all right, you’re okay, but you know that things are feeling heavier and more tired. So there’s those symptoms related to the changes in the nerve conduction. And when we go to kind of reach and do something with our hands, we rely on summation. We rely on all of the nerves coming down at once to be there for us and then selecting who needs to stay there and who doesn’t. And it’s those long nerves conduction, that sustainability that I think the early signs That kind of fatigue. So is that fatigue because of the reduction in the speed of nerve conduction you can have. And that’s like a direct MS symptom. And then there’s the fatigue you will get from, that kind of slowing. know, know, my muscles work, but they just don’t feel like they’re firing on all cylinders like they used to.

But it’s really, really important to find a way to exercise around that. Because what I see as a therapist and what I see less so as the therapist to see people much earlier on is the muscle atrophy because it’s been harder to exercise with that fatigue coming on and knowing how to adapt your exercise with that fatigue and knowing is the fatigue due? Is it something that I can manage? Is it heat that’s affecting that? Is it?

Am I doing too much? Am I doing the right type of exercise? And while I can’t give specifics, that sometimes I find really helpful. I’ll say to someone, just diarise, what were you doing before? What were you doing after? So you can understand a little bit how your own body is responding to exercise. And also comes down to individual choice.

Some occupational therapists, cetera, will talk about fatigue management, but some people would say, I’d rather go out and do that Pilates class with my mates, have a cup of tea afterwards, and then rest the next day because I really enjoy that. And other people, it might be more small chunks of small amounts of exercise. Whichever way you choose that works with you, it’s about finding ways to exercise around the fatigue and the muscle ache.

 

You can also get muscle ache due to delayed onset muscle soreness from exercising a muscle that hasn’t exercised for a while. And all of us in the general population can experience that. So, you know, not all muscle aches are related directly to the MS. sometimes we can’t, honestly, we can’t answer. It’s just holding all of those things that could be responsible in one basket and finding ways around that. Have I exercised too much? Has it made me too fatigued? Has it made me too sore? That would be normal soreness in terms of if I was exercising without MS or is this MS related fatigue? So it’s never a finite answer, but it’s holding those questions and I think diarising, having a discussion with yourself, having a discussion with a healthcare professional if you’ve got access one to try and flesh out what’s going on and finding ways to exercise within all of that,

 

Gina Beach (08:49)

So besides physical exercise and physical therapy, which we know are really helpful for its fatigue, do you have any other suggestions for maybe complementary medicine or other techniques people could use to deal with leg fatigue and stiffness? And would that differ if someone has relapsing forms of MS compared to progressive forms of MS?

 

Jody Barber (09:10)

If you’ve got kind of aches and pains, we’ve got lot of free nerve endings in our skin. And if you’ve not moved your skin, your body much, our connective tissue is continuous from our skin all the way through to our bone, all the way through our bones, all the way through our muscles, all the way through our organs. So sometimes you can feel soreness from moving something that hasn’t moved for a while, or it could be sensory changes due to the MS.

So if it’s that kind of pain, that discomfort that’s preventing you from wanting to move, I would say some complementary therapies that people might, that might be worth exploring, and I can’t say definitively, might be massage, might be, you know, those touch therapies, myofascial release type massage, and or acupuncture to have a look at, because they work on the connective tissue as well. So acupuncture has a higher evidence base for support with pain relief. If it’s the pain and the soreness and the discomfort, but you’re going, yeah, but I still exercise, but it’s still uncomfortable. The other thing, is more a movement therapy, like exercising in water, where you’ve got the analgesic properties of the water that might help make it easier to move.

If you’re in water, you’ve got the hydrostatic pressure of the water. Walking in water is really good for helping with circulation and helping with the swelling as well. The hydrostatic pressure because of the deeper the water can help with that. but also any dance, stretch, yoga, anything, movement for joy as opposed to like, I’ve got to do it because I have to, I would say move away. So move, I’d move more into what activities can you do? that could be seated dance could be, you know, there’s lots of contemporary dance, something that helps you move in a body that in your body that doesn’t feel that it’s combative.

 

Gina Beach (11:05)

That’s really lovely. That idea that all movement counts we don’t have to just grind it out and do reps of specific exercise to still get the benefits of movement. I love the tip about exercising in water. It also prevents overheating, so you can usually move for longer because you’re not getting fatigue from the heat. So that’s great. Thank you so much, Jodi. Our next three questions, I’m going to turn it over to Vickie.

 

Vickie Hadge (11:31)

Could you please ask about the best physio exercises for rebuilding core strength?

 

Jody Barber (11:37)

So firstly, I want to qualify what core is. So just so that we’re all starting from the same place and what I believe the core is. if we’re talking about Joseph Pilates and who defined the core muscles.

They were talking about a group of muscles in your spine called mortifidus that connect your individual vertebrae together. Your abdominal muscles in particular one that wraps around your belly called transversus and then and your pelvic floor. And that’s what they were talking about that those core muscles and they’re very, very deep muscles and they are responsible for supporting your spine and the heavy bits of your spine, your vertebrae at the bottom are really, really thick. And through immobility and lack of movement, lack of innovation, they can sometimes not come online when you need them the most. And you need them the most if you’re doing any exercise against gravity. But say I’m going to reach forwards and pick something up.

 

I would ideally want them to come online, but they come online kind of first, they’re deep and then other muscles around your torso will also be involved and come on. If they’re not coming online, when you go to pick something up or do something, your arms are taking a lot more and you’ve got this kind of, really see but I’m a physio, I’ve got this saggy spine and not taking on. So that’s what we mean by our core muscles. So when it comes to what’s the best exercise, it’s firstly, so Pilates and some yoga and some physiotherapists will focus on my early training as a physiotherapist. This book was called Right in the Middle. It was about recognising unless you sort out the spine in the alignment of the spine, then it’s going to be harder to bring on those muscles of background postural control is what I prefer to call them as opposed to the core because it’s more than just the core.

So the best exercise is firstly finding something that’s going to help you engage with, deep with your spine, and in terms of alignment, so that stretch and length, because if you’re all bent up, you can squeeze all you want, but you’re not going to bring them online when you want and look at functional movement as well. So Pilates, yoga, physical instructors, all of those will have an understanding of core exercises, what those muscles are. And it’s not about gripping and holding them really, really tight. It’s about learning to feel them. I work with the Pilates instructor that does a lot of reformer Pilates because you can use the resistance of the equipment, particularly if you’ve got sensory changes and sensory loss and it’s hard to feel to and once you can feel them and we’re just working with a guy today, he’s done that, he can now walk on the stairs without holding on because he’s felt them and then you put that into real life movement practice and without thinking about it.

 

Vickie Hadge (14:28)

That leads us right into our next question. Are there any yoga apps or YouTube programs that you would suggest for people with MS?

 

Jody Barber (14:36)

I practice yoga and part of my yoga teacher training was I had to go to lots of different classes and understand. there’s two things. Yoga is in its essence, looking at the relationship your breath your body has to gravity and breath and I would say where yoga is different to pilates is that it will start with that relationship deeply and it’s also is a moving form of meditation. So I have got some links which give links to a couple of UK charities that have some really good online classes.

 

The MS Society also has some really good pre-recorded clips of yoga on there so that anyone can access. MS UK has got some live classes, some really good live classes. And Qi Gong, But I would say if you’re looking, we know these people have a good understanding of MS and know how to adapt.

 

Other local centres also do, our local centre does online classes as well in the UK local MS centres. just try one out. For me, if I like the sound of their voice, that’s a big one. know, afraid, I variety is the spice of life. So don’t be afraid to try different things out and choose. But if you want something that understands MS and can adapt, then go to the MS kind of charity.

 

Vickie Hadge (15:51)

We also do have some yoga on the Overcoming MS Hub that you can find if you search for yoga on our hub. And also our very own Gina Beach does do yoga and she has her own YouTube channel. So you can check out Gina.

 

Our next question, how can people with MS maintain mobility and independence as symptoms progress?

 

Jody Barber (16:14)

So this is one of my areas, I suppose, of passions really as a therapist is how can you still exercise when there’s progression? I think that can be a hard one for you to accept if things have been going along well, just talking to someone today, that it can feel like when things have been quite stable and then something changes, you must feel like you’ve got to pick yourself up again and what do I do or adapt what you’re doing?

So I would say if you can find a therapist to consult with, if you’re struggling to know how to adapt, I would do that. But let me start with, your exercise was walking and you can no longer go out for a walk.

If you can’t do what you were doing and that’s frustrating. So a lot of people will come to me and say, well, I can’t run like I used to. And same thing I would say to a musician, let’s explore something else that you can do. What are your goals around exercising? Do you like more competitive sport or do you just like moving? So work out what makes you tick and always do what you enjoy. So if you like more competitive then is there something like we play boccia at the center where I work at or can you throw things really hard with one of your upper limbs or both of your upper limbs to get your heart rate up to exercise your upper body? So it’s about how you adapt but working out what you like. Do you like it to be competitive? Do you want to go to a class?

 

There isn’t one definitive thing, but I think the hardest thing about sustaining exercise in the context of progression. so exercise needs to include an element of something that can get you out of breath, which is hard. So upper body exercise is resistance. So I’ve got one man that I treat regularly, he’s just got the use of one arm and he’s dependent on a hoist, but we can get him quite out of breath by pulling a bit of thera-band that’s attached, resistance band attached to his wheelchair and has been building that up. What’s been interesting, going back to the first exercise, the question before about core, is built up of lip or abdominal and trunk strength and his bowel movements are better. So you never underestimate the power of exercise if you’ve only got the use of one limb, for example, sometimes people can think.

Well, what’s the point? Because I can’t do this and I can’t do that. How can that? But you can see improvements. So there’s strength exercises, mobility exercise, which is harder. Sometimes you might need to recruit the help of someone to help you move the bits you can’t move yourself. But you can be creative. back to strength exercise, arm wrestling is good fun, yeah, it’s been creative about how you can change your position regularly through the day to get a change in position to stretch muscles or use family members or carer support members to, be educated by people on how you can stretch and move.

 

Vickie Hadge (18:50)

You know, we may not be able to do the same kind of movement that we did before, but we can find another kind of movement that will give us that same feeling and that same sense of satisfaction. So that’s wonderful. All right, I’m going to turn it back over to Gina for the next bit of questions.

 

Gina Beach (19:07)

So next from me, what if someone is experiencing pain and they are interested in seeing a physio, but they’re concerned that maybe their pain will get worse with the exercise? So think this is a two-part question. Can physio help with pain? And any tips for someone who might be a little bit anxious to come see you for fear that they’re going to feel really sore, that their pain’s going to be exacerbated?

 

Jody Barber (19:31)

Pain is one of the first modules that I learned at university. Pain is when most people will kind of stop moving and seek help. your physiotherapist, will have a good understanding of pain. So don’t be afraid to communicate those fears and those concerns to your therapist straight off. They will be receptive and they will understand.

So if there’s a part of your body that’s really painful, say it’s your right shoulder. there’s an interesting fact about the anatomy, so I do digress, but if there is a body part that you’re really worried about moving and you’re worried that it’s, you might need to build that relationship up with your therapist first. So don’t be afraid to say, look, I don’t want you to touch this because it really hurts so maybe don’t go straight in for the jugular as I say, go in through a route that you feel more comfortable because if you’re anxious, your pain responses will be heightened. It might be that you start with breathing exercises might be a really good place to start to help some relaxation because if your pain and anxiety go so close together but they’re like a vicious circle that if you’re anxious your pain will go up. I suffered for years of really painful periods dysmenorrhea and I learned from a young age that if I could use relaxation techniques I wouldn’t experience as much pain but the thought of the pain building up I used to get anxious.

So that I’ve got a personal experience of, bringing your anxiety levels down. So it might be that’s where you start. You might not even start with the physio. It might be start if you’re really anxious about that, that’s at one end of the spectrum. The other thing practically that if your shoulder’s really painful, you’re worried about moving it, your shoulder and the same with your pelvis is connected to the other shoulder through, loosely through something called your shoulder girdle, your collarbone and your spine and your rib cage. So if you move this bit here, you are encouraging a bit of movement on the other side and the same with the hip and the leg. Your pelvis is a ring of three fused bones, but if you really mobilize, and I was doing just the other day with someone, the unaffected, un-painful hip, you will be getting a bit of movement. It’s the part you’re really afraid of moving. So there are ways that your therapist can nudge into that area to encourage movement.

And there have been really interesting studies on if you fracture your arm and you really exercise the other one, that arm, that doesn’t get as weak as if you didn’t exercise it. So there’s evidence that we’re all connected.

 

Gina Beach (21:56)

That’s really interesting and that’s also good to know because I think there’s also sometimes a concern that we over exercise our strong side and will that be better or worse for us. So it’s nice to know that exercising on the strong side can have residual benefits even on the weak side if that’s not as mobile or experiencing pain.

 

Jody Barber (22:15)

I would never ever say don’t move, don’t exercise. And I think it’s just how can you engage the non-strong as you brought that up, the non-strong size, what can you do to bring that online?

 

Gina Beach (22:25)

Yeah, that’s great. Is there any movements or exercises that you’ve seen exacerbate MS symptoms that we should be cautious of or approach with care?

 

Jody Barber (22:36)

No, I wouldn’t say that, but in certain individuals may have been advised because that’s pertinent to them. So I will give an example someone might experience like dizziness if they move their head, that’s a hidden kind of visible symptom, vestibular dysfunction. avoiding that isn’t the way forwards. The only time that you would avoid moving if there was going to be structural damage to your musculoskeletal system so like you would exacerbate a disc bulge or something.

 

Gina Beach (23:10)

Which would never be related to MS. That would be comorbidity,

 

Jody Barber (23:13)

If someone’s recommended for you not to move because sometimes people are living with MS and other comorbidities but in terms of making your MS worse, yeah there might be certain conditions. Don’t exercise in a hot room if you’ve got heat sensitive fatigue that will make you feel worse. All of us can over exercise if you don’t hydrate enough before you exercise. 

I had to do when I was training as a yoga teacher, we did a yoga diary, all sorts of things about when’s the best time for you to do your yoga practice. So there are going to be times a day where you find exercise is going to be a better experience for you. So it might be around working out what is the best time of day for you to exercise, what other things might be impacting on your experience of exercise, like the heat sensitivity I’ve already brought up and things like that.

 

Gina Beach (23:59)

And maybe taking it in chunks because I think sometimes we get fatigued or our form gets poor or like you said, it’s too late in the day. So a little bit and often is probably a way to go for a lot of people. If we’re having sleep difficulties, which affects loads of people in the general population and even more so in the MS population for a lot of people. Yeah.

 

Overcoming MS (24:25)

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Gina Beach (24:34)

What can we do to help manage sleep? Can exercise help this? Do you have other tips to help us stay asleep and maybe get to sleep if that’s a struggle for us?

 

Jody Barber (24:45)

So firstly, what is the sleep difficulty? Is it insomnia? That’s difficulty getting to sleep, staying asleep for long periods of time. It might be that you wake up during the night and struggle to go back off to sleep again. There are sleep-related breathing disorders that include chronic snoring and then you stop breathing and start breathing again and then you can get periodic limb movement disorders that’s sudden jerking or kicking in your sleep. So restless leg syndrome, so that’s an overwhelming urge for your legs to move in your sleep. So there are things that can be done to help with sleep-related snoring, then firstly understand is there a disorder to your sleep or is it general sleep? You just can’t get to sleep. So your GP might be able to help you navigate that. And then if it’s sleep related to snoring, then Sleep Study Center could help look at that and look at if you’ve got sleep apnea and you need support with that. Restless leg syndrome, there are medications and things that can help.

But there are many reasons why your sleep can be disturbed in MS. Just due to the symptoms of MS, there’s spasms, pain, anxiety, depression, waking up a lot to go to the Lua in the night, high levels of daytime fatigue can make it harder for you to sleep at night time. So it might be working out. Is there everything you’re doing to understand that symptom and maximally manage that symptom. For example, if you’re waking up many, many times in the night and that’s a new symptom to go to the loo, is getting help from a continent specialist to understand why that is, is there anything you can do? Are there any interesting factors? It’s normal to get up at least once in a night if you’re over 50, or twice in a night in your 70s, three times in a night if you’re in your 80s.

 

Gina Beach (26:29)

It’s good to know that this plagues many people, especially as we get older. So sorting out what’s MS and what isn’t. I know taking baclofen and using magnesium oil helps with my twitchy legs at night, massage and not drinking any caffeine. So, you know, people can try lots of things and see.

 

Jody Barber (26:47)

Well, I’ve got a long list here. So staying as physically active as possible is obviously a challenge for people. I know if my day’s been less physically active, I can find it hard to go off to sleep, but allow plenty of wind down time before bedtime. Avoid getting overtired. So if you nod off, if you’re nodding off and then you go to sleep, that can make it difficult. trying to go to sleep before that happens.

Daily exposure to sunlight, which is hard in the UK, but getting out there and enjoying it. You’ve mentioned caffeine, stimulants, trying to reduce your stress before bedtime. I’m really strict with that. I will not have challenging conversations after 9 p.m. My family know I won’t answer my phone. because if you are doing anything highly cognitive or stressful before bed, I won’t even watch stressful TV. And have a good bedtime routine, low light levels before bed. So all of these things, a sleep expert would sell you milky, milky drinks, Ovaltine, stuff like that to try and help bring in those sleep hormones. No TV in bed, things like that. iPhones, no phones. Temperature control is really important. It’s cooler than you think.

And then try not to force your sleep if you wake up. Sometimes if you are having to just get up, have a cup of tea, say have a cup of tea or whatever, or read a book or something light and just say, I will go back to sleep again. I will go back to sleep. Try not to fight it. There’s a sleep expert that I met at conference a few times and I asked him what his top tip was because we talk about avoiding alcohol and things like that. And he was drinking a glass of wine. He said, you know, you got to enjoy life. And he said that if your partner snores, and that’s disturbing you. You either get your partner’s snoring sorted out or you sleep in a separate room to them if that’s possible. But I thought that that’s practical that a lot of you don’t see in a lot of the sleep books. And the other thing is mattress. He said, you know, if your mattress is poor, whatever your budget is, make sure that you’ve got a good mattress because the surface that you’re sleeping on, if that’s not comfortable, that will affect your sleep. I did.

 

Gina Beach (28:54)

Absolutely. We’re going to spend a third of our life on it. We should invest where we can. Those are really helpful tips. Thank you so much, Jodi. I am going to send you back to Vickie for the next batch of questions.

 

Vickie Hadge (29:04)

Thanks, Gina. My next question is, I find it really frustrating when people don’t see what I’m going through because of my invisible symptoms. Any advice on how to communicate invisible symptoms to family and friends who may not understand?

 

Jody Barber (29:18)

Thank you. I really like this question because I think it is a hard one. It’s a hard one. But I would say some people I know have managed this by doing something themselves and they have chosen to wear a t-shirt. So the lady who I supported in the gym, who would wear a t-shirt saying, I’m an MS warrior. And that helped her manage in that environment that, other people knew cause she looked like everything was, fine as some of you, people who have asked this question. But she, was a gentle way of starting that conversation and making other people aware that she had symptoms that people couldn’t see. That might not be everyone’s choice to do that, but that’s something that, this work for this particular individual. But you could explain to somebody how your MS affects you and emphasize that it includes invisible symptoms.

 

They often talk about the inverted iceberg. So there’s a little bit of MS that you can see. And then there’s a whole host of things underneath. And there are loads of different resources where we can be interactive. It’s like spasms. We can click on spasms and it will explain. So if you want, you could explain this and then say there’s a resource you could read. You could highlight to a friend or colleague or family member when your symptoms are playing you up and being open about your limitations. So I share an office with someone living with MS and she’s really good at that actually.

And we do adapt the room temperature. she’s like, I’m worried it’s going to be a hot day. So come over the air conditioning on first, because it’s going to really affect my cognition later on in the day.

That’s a really nice way that you can take control and let people make people aware because you know, lots of people just getting on with their own lives. They’re not thinking about your symptoms or it might be that you’re worried about your fatigue and you might say, look, can I take the bus into town so I can use my energy for shopping when we get there? Instead of talking about your fatigue is how you can do something proactive, but you’re making that person aware that you’ve got something that they don’t have to consider. But you could try different ways to explain your symptoms. instead of talking about talking about muscle stiffness might be easier than talking about spasms. So my muscles feel, you know, really, really stiff and it makes it harder for me to move them or feel them or whatever.

 

Vickie Hadge (31:39)

I find over the years with my MS. I’m just having to gently remind people that my symptoms do change from day to day. And even though you can’t see them, I might be experiencing them.

What should someone look for when choosing a physiotherapist for MS care?

 

Jody Barber (31:55)

often people in their diagnosis for MS may have seen a sort what we call a more sports injury or muscular, skeletal therapist along the way. And increasingly I’m finding people are really resourceful, willing to learn and understand. So I would say that I’ve met many therapists who have really helped people who aren’t neurological experts as well along the way. So don’t disregard what a physiotherapist would have to say. But if you want someone that’s got expertise in multiple sclerosis, ask the question. What’s your area of expertise? Because you’ve got physiotherapists that may be more generalist but will have expertise in older people and they actually will have lots of resources to help people out and they might be able to in terms of balance and stuff like that. They may be neurological physiotherapists, but they may have specialised in treating people with strokes. Again, they have a lot of transferable skills. if you are able to come across the physiotherapist as expertise and a special interest in MS, that’s great, but not all physiotherapists will have that expertise, but you can educate them. So I would find out what do they know? What are their areas of expertise?

Most physiotherapists will have a good understanding. about locomotion and how the body is affected when locomotion and movement is and how to support that. ideally go for physiotherapists that has some neurological training, a background I just want to be realistic, because you might not have access to a neurological expert physiotherapist.

 

Vickie Hadge (33:26)

Our next question is, what’s one piece of advice that you can give to help me take control of my health?

 

Jody Barber (33:33)

I would say exercise. I think the evidence is very, very compelling. And the evidence is around maintaining your brain volume.

So it might be upper limb exercise, but any exercise that gets you decently out of breath. So HIIT aerobic exercise because it’s that type of exercise that gets you decently out of breath and you don’t have to do a lot of it just regular small chunks of it through the day. It doesn’t have to be a marathon runner. What that does is the studies have demonstrated that that increases the particular proteins that you need in your brain to maintain your brain volume and for me, type of evidence is what’s emerged over my years as a physiotherapist.

And then we discover exercise is just the best thing that we can do, but it’s exercise that gets you out of breath. that is a one piece of advice I would give that and give up smoking.

 

Vickie Hadge (34:29)

I read a research paper that was released just a few years ago where they said exercise is the single most effective non-pharmacological treatment for multiple sclerosis. So right after medications, exercise is the second most important thing. All right. I’m going to turn it back over to Gina for our next group of questions.

 

Gina Beach (34:47)

Thank you, Vickie. Do you have some go-to exercises to help with nerve pain? And you know, what are they maybe? How can we try them at home and see if they’d help us?

 

Jody Barber (35:00)

So I would start with some relaxation exercises, some breathing exercises and movement.

Nerve pain can be really distracting and sometimes just breathing, deep breathing exercises, relaxation and movement that’s not focused on the area of the body that’s painful. So, and I’ve talked about dance, I’ve talked about yoga and things like that might be better than trying to persecute that part of the body with making it moves straight away. And we’ve talked about pain and I’m assuming if there’s sensory or hypersensitivity, it’s moving another body part. think about, I’m improving the blood flow to that area and blood flow is really important for nourishment and nourishing that body part. And particularly there are things that you can do that will increase blood flow directly through the nerves. So flossing of your sciatic nerve or flossing so upper limb exercises when you’re moving from side to side will just gently floss your median nerves through your arm. And so maybe ask a therapist or your yoga teacher might even know about what exercises will increase the blood flow specifically through my nerves. That might be helpful.

And I do introduce a lot of what I call nerve mobilizing exercises into a movement class that I might teach or an individual session. And so this is increasing the blood flow through your peripheral nerves to help with the health, help keep it healthy. Because we need to be interested in the health of our nerves, particularly as with MS, some of them might have thinning of the outer lining of the nerves from the damage from the myelin.

 

Gina Beach (36:42)

Yeah, and I love that idea that it’s about mindset. all movement is good, and all movement is a holistic, promoting blood flow, promoting circulation. What about spasticity? I know we talked about it a little bit at night when we were talking about the sleep question. But what about daytime spasticity? What can we do to manage it and spasms besides medication?

 

Jody Barber (37:02)

Okay, so spasticity, often people experience that in their legs, can be anywhere in the body. But weight bearing exercises, there have been some very small studies that have evidence around weight bearing exercises can help. So If you find that difficult to stand, it’s finding a device that can help you stand up to help with if your wheelchair bound or whatever weight bearing exercises can be helpful. But also, going back to talking about our core and our background postural control, that if that’s not as engaged, you fix a lot more with your limbs, with your legs and your arms. So it won’t have an immediate effect, but learning how to engage your core muscles, your trunk muscles, through Pilates, through yoga, that type of keeping that strong can help minimize the spasms, the spasticity. There might be something that’s got a bit tight, a bit of out of alignment and you’re overusing. so, having someone assess that and see if there’s something you can do specific to bring your joints. Because there are places where our bones, when you stand, where you can get your bones just to load so the muscle activity is more efficient. So sometimes we’re overusing and that can exacerbate the spasticity. But the other thing is always to do that kind of health check around how’s my bladder functioning and my skin.

Have I got any, if you’ve got sensory loss, if I got any areas, even just the tiniest little tissue tear that you can get from dry skin can cause something that can exacerbate a bit of spasm, a bit of pain. Sleep as well, I’ve mentioned before. So it’s just check-listing your general wellbeing and your anxiety, all of that. They’re all going to impact on that. So it might just be, am I feeling a bit you know, overwhelmed a bit too much, is life coming at me too much? Is it worthwhile investing in some deep relaxation, some yoga or yoga nidra or whatever, just to help kind of reset my nervous system and all that helps support my symptoms of spasticity.

 

Gina Beach (39:09)

I really appreciate how you’re really integrating the exercise and the stress management pillars of the Overcoming MS program and how the physical and the mental are so inextricably linked and we need to pay attention to both. I know you mentioned very briefly vestibular exercises in passing, but can you talk a little bit more about that and any advice you have on improving balance?

 

Jody Barber (39:31)

Yeah, certainly. So in order for us to balance efficiently and well, we rely on our good visual system, so our eyes. We rely on a good musculoskeletal system, so our muscles, our joints, to all work and to have good sensory feedback. We also rely on an organ in our inner ear called the vestibular system that’s separate to the cochlea, which is the hearing system. And it’s a very complex organ that detects acceleration movement of your head and what it does in a nutshell when I move my head forwards it allows my eyes to move at the right speed and kind of and steady my environment so when I turn my head my eyes come around and the world is still studies say about 50 percent of people with MS will experience vestibular dysfunction. I would say it’s a lot more in my personal clinical experience at some stage to lesser or greater degrees. And it’s one of those invisible symptoms that can even be invisible to the person living with MS know that because what you’ve done is you’ve learned, that makes me feel weird. And you’ve learned not to move your head as much, not realizing, realizing you’re doing it. So vestibular symptoms are often experienced as a feeling of just straightforward dizzy, a bit nauseous on movements, some people say they can feel like they’re walking a little bit like they’re drunk sometimes, but not always. The symptoms can feel like they can come and go. They might come on in certain situations. They might only come on in sort of busy, crowded situations because your visual systems being challenged a bit more. And the trouble with MS is you could have a little bit of a visual problem, a little bit of a muscle joint problem, and a little bit of a vestibular problem. You put that all together, your balance is going to feel really out of whack, and you can’t really explain to anyone why. So I can’t recommend enough, seeing if you can find somebody with an expertise in vestibular to unpick that all for you.

Now the challenge you need a good hour to 90 minutes to properly assess the vestibular system. But you as a person need to be fully engaged in wanting to understand that. And if it’s not the right time for you, and it’s not a priority, and I will always ask this because the way to help it is often through doing eye exercises, but you’ve got to do a lot of them regularly, little chunks through the day. You’ve had bit of inflammation on the nerve that talks to your ear and your eye, and it’s got a bit out of whack. And it’s a bit like you’ve broken your arm, you’ve had it in a cast, you’ve had it still for a bit, you’ve taken the cast off, and then no one’s told you need to exercise it with the vestibular system, I’ve been dizzy in the past, sat still for a bit, not moved much, it’s got a bit better, but then certain things bring it on. But no one’s told you, you need to exercise it to get yourself back to baseline.

 

Vickie Hadge (42:21)

Okay, our next question. Can exercise and physiotherapy help with brain or cog fog?

 

Jody Barber (42:27)

Yeah, so there have been several studies being done recently looking at the relationship between exercise and cognition. then the question I usually get asked is what type of exercise? So there’ve been studies looking at the relationship between walking and cognition. It doesn’t need to be a huge amount to improve your cognition, but it needs to be regular. So there is a huge relationship between cognition and exercise in all domains. So we’re looking at everyone’s brain, but also the MS brain as well. But there have been quite a lot of studies and the conference before for last in the UK, the MS trust that yeah, cognition and exercise was the running theme there. But then people say what type of exercise and any type of exercise is going to have a positive impact on your cognition.

 

Gina Beach (43:26)

Do you know if Fampyra is beneficial for people with MS who have mobility issues. Do you have any experience with clients who use Fampyra to improve their walking?

 

Jody Barber (43:36)

Yeah, so there’s a Fampridine clinic held in London at Queen’s Square, but they do have a set criteria of who they think it’s going to benefit, but I’ve got quite a few clients who I see who are on Fampridine and have found that really, really helpful.

 

Gina Beach (43:52)

Do you have some specific exercises that you suggest to people who experience foot drop?

 

Jody Barber (43:57)

Yeah, so for foot drop, first of all, I would make sure you’re maintaining the health of that area. Because sometimes if it’s not your foot’s designed to be a mobile platform with, it’s got lots and lots and lots of bones and joints and ligaments in it. And if you’re not able to lift it up and move normally on it, then other things can get stiff. So you want to maintain that mobility of the foot in general. And then exercises that can help with foot drop. There’s lots of toe and exercises and feet exercises, scrunching the toe up, rolling the foot over the ball to exercise around that.

 

There are lots of exercises that you could do. Even thinking about lifting your foot up, it will increase the blood flow to the motor association area of your brain. So our brains house different areas where your hand is represented, your foot is represented. So particularly in stroke rehabilitation, there’s been loads of studies done about thinking about moving it. Or another thing is mirror therapy. So if you put your foot next to a mirror, the foot that doesn’t have foot drop and the foot that does have foot drop on the other side of the mirror and you lift it up and you look in the mirror, it tricks your brain into blood flowing into that area of the body.

 

Vickie Hadge (45:09)

All right, our next question, what advice would you give to a physiotherapist that’s been diagnosed with MS and works in healthcare full time in terms of managing the condition while working and the stress that it brings?

 

Jody Barber (45:21)

Actually, I’ve worked with two colleagues who’ve been diagnosed with MS and they both worked in a specialist neurological centre and they found it too distressing to work with other people with neurological problems and MS. So moved to working, in an area that was not, where they wouldn’t meet someone else living with MS. Physio is a physically demanding profession. And as I’ve got older, I’ve chosen to balance my hands, in particular, I’ve early onset arthritis, I’m on hands, I’ve had to balance my weak so that I’m doing online sort of therapy and teaching and stuff.

So there are many, many other areas of physiotherapy like mental health and stuff like that where it’s not as physical, where you can still add value as a physiotherapist.

So it’s now a time to work in an area where I’m not relying so much on my physical ability, but there’s occupational health departments. that can help you with make those reasonable work adjustments as well so that you can still do that work in an area that you enjoy.

 

Vickie Hadge (46:20)

Awesome, thank you so much for that. Are there any exercises that are easy to do at home with no equipment to help build and maintain muscle?

 

Jody Barber (46:28)

You’ve got gravity is a really good resistance to exercise. So with no equipment, it’s looking at, so the bridge exercise is one that often physiotherapists give because you don’t need any equipment to do that. And you can work your gluteals against gravity, sit to stand, know, it’s exercise we do every day. You can work your hips and your glutes against gravity, lifting your arms up above your head or supporting your body weight on your arms in a plank position and legs in a plank position depending on who you are. Gravity, all of those things that involves how you move your body in relationship to gravity and hold your body in relationship to gravity. You can definitely get a lot of resistance from that.

 

Gina Beach (47:07)

What’s your experience with electrical muscle stimulation for strengthening muscles? If someone wanted to try it, is that a case where they ask their physiotherapist or do they wait for it to be recommended to them?

 

Jody Barber (47:20)

So functional electrical stimulation is used in the evidence base and research studies for that with foot drop are really, really strong, but you can use it in other areas of the body. recently treated a gentleman who had, for want of a better word, he had just a real sensory weakness. So his lack of sensation meant he wasn’t using his side of the body and electrical stimulation actually was able to help bring back recovery on that side. That’s not always the case, but it’s, I’m a real advocate of electrical stimulation. It can also help. So it can help in muscle recovery if you’ve not been moving that part because of disuse or sensory loss. If you’ve got motor damage or motor loss there, can help, particularly with foot drops, who’s stimulating the nerve, the perineal nerve at the bottom, it can help provide the action for you.

Now there’s a word of warning, for some people it can, the fatigability of the nerve can mean that the electrical stimulation is not helpful. But if you want to access that, it’s probably best through specialist centers, some private providers, but they’re incredibly expensive. I would always recommend going through a specialist center where you could trial using it. where I used to work, used to you know, do an assessment and that person could trial that for six weeks to see if it was going to help. You can use it on different body parts, muscle parts to help with recovery. Certainly will help with blood flow and muscle health as well. So you’ve got things called neurostimulators that you can put on that will help. Like people use call them slender tones for like weight loss, you know, but that can help with blood flow and nourishment. So that’s really, really, it depends what your goal is, but if it’s for improving movement and muscle strength.

Yes, there is evidence, but it is very individual.

 

Gina Beach (49:06)

Thank you so much, Jodi, for your time, for your expertise, for talking through so many different topics with us tonight.