Professional advice

Doctors, nurses, therapists, and orthotists from the National Hospital for Neurology & Neurosurgery (UCLH) answer questions that they frequently get asked by people who live with neuromuscular conditions. Read or watch videos about handy hints from professionals in neurorehabilitation.

Question 1: How many other people have got my condition?

Dr Aisling Carr, Consultant Neurologist, and Dr Gita Ramdharry, Consultant Allied Health Professional at the National Hospital for Neurology & Neurosurgery (UCLH), talk about how many people live with nerve and muscle conditions which can be inherited or inflammatory.

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    Dr Gita Ramdharry, AHP consultant: “So some of the questions we get asked quite a lot in clinic is how many other people have my condition.

    So I can tell you a little bit about some of the nerve conditions that we see.

    So we either see people who have inherited nerve conditions with conditions like Charcot-Marie-Tooth disease (CMT), and we see people with inflammatory nerve conditions such as CIDP or Guillean-Barré syndrome.

    Now, these are relatively rare conditions with CMT, the inherited neuropathy about 40 in a 100,000 people are affected by that, which works out about one in two and a half thousand. And the inflammatory neuropathies are much rarer. So between eight to ten in a hundred thousand people are affected by those muscle conditions.”

     

    Dr Aisling Carr, Consultant Neurologist:

    “So muscle conditions, if you group them all together, muscle diseases that are inherited are about nearly 40 per hundred thousand.

    But we usually subdivide those up depending on what the gene causes.

    And individually, things are much, much rarer.

    The inflammatory myopathies, which are the treatable type, are rarer again.

    They occur in about two per hundred thousand, but then Myasthenia Gravis, which again is a treatable disease which affects the connection between the nerve and the muscle, has a frequency of about 20 per 100,000.”

Question 2: How will my condition behave over time?

Dr Aisling Carr, Consultant Neurologist, and Dr Gita Ramdharry, Consultant Allied Health Professional at the National Hospital for Neurology & Neurosurgery (UCLH), explain how Inflammatory or acquired neuromuscular diseases behave over time and then go on to answer the same question for inherited or genetic neuromuscular diseases

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    Dr Aisling Carr, Consultant Neurologist: “Another question we very frequently get asked in clinic is how will my condition behave over time? We’re going to split this answer up into two sections, one for inflammatory or acquired neuromuscular diseases and then discuss inherited or genetic neuromuscular diseases. The inflammatory or acquired conditions usually start in adulthood with a baseline of completely normal mobility and neuromuscular functioning, and then with the onset of symptoms and the development of difficulties over either a few months to a few years before presentation. These acquired conditions tend to be treatable or potentially treatable. The aim of treatment is either to stabilise and prevent further deterioration. But in some cases we can achieve improvement in strength and function. The individual choice of treatment, the effect of treatment depends on the condition, depends very much on the individual and their response to the treatment chosen.”

    Dr Gita Ramdharry, AHP Consultant: “So with inherited or genetic conditions, it’s a little different in that they tend to come on earlier in life – often in childhood, teenage years or in the 20s. There are a small group of rare conditions when it comes on a little bit later, but more generally it’s earlier and often the onset is not sudden. It catches up with people and then you see a slow progression over many years of the disease. So people may not necessarily notice a change over six months to a year, but they might have seen the change in the last five years. Obviously, if somebody is unwell with something else, then that can mean that their function takes a dip but it’s not the condition itself. Other times people have noticed that there are thresholds that they reach where they suddenly realise that it has actually become really difficult to do a certain task like doing the shoe laces or going up the stairs. And that can seem like there are steps in it, but the background of the condition is always this slow progression.”

Question 3: What are Top Tips for managing fatigue?

Rebecca Jeffcott, Occupational Therapist at the National Hospital for Neurology & Neurosurgery (UCLH), talks about the following six areas that are critical to manage fatigue: Sleep, rest, diet, exercise, thoughts and mood, and managing activity.

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    Rebecca Jeffcott, OT: “One of the questions I get asked a lot is how to manage fatigue. There are six key areas to fatigue management. The first one is sleep. Sleep is really important for topping up your energy levels overnight, so it’s important to consider the factors that might be impacting on your sleep. Think about whether your environment is comfortable. Think about your behaviours. Have you got any bad habits that might be impacting on sleep, such as watching TV too late, eating too late or having too much screen time before bed. Are there any symptoms that need managing which are impacting such as pain and cramps? And often our thoughts, mood can impact on our sleep. It’s important to address these. Talking therapies, meditation or mindfulness can help manage these. The second area is rest. Rest is really important for topping up your energy levels throughout the day. We recommend that you take regular short rest breaks and try and take them before you get too tired because it’s easier to recover. It’s important to rest both your body and your mind. So using strategies such as relaxation or meditation can be really useful for ensuring you get quality rest. Ensuring you’ve got a healthy diet is really important for making sure you’ve got enough energy to keep you going throughout the day. Exercise is another very important area for fatigue management. If you make sure that you are as cardiovascularly fit and as strong as you can be, then you spend less energy during activities. Exercise can also be very energising, if you pick the right type of exercise. This also helps with other factors such as mood and sleep. Psychological health can have a huge impact on your fatigue. Being anxious and stressed can be very draining and feeling low can make you feel very lethargic. So it’s a really important area to manage. It’s important to speak to your doctor, if you feel that you’ve got difficulties with psychological health. There’s lots of talking therapies available. It’s also really important to make sure you spend time doing enjoyable activities and making sure you’ve got energy left for these. Also, exercise can help with mood and anxiety. Finally, it’s really important to make sure you budget and conserve your energy. And there’s lots of strategies to do this. Firstly, you need to be organised and plan ahead so that you spread heavy and light activities over the week. Try and prioritise what’s important to actually be done during the day. It’s also important to pace yourself within activities, so this means breaking tasks down into smaller, more manageable chunks with rest in between. Adapting tasks can be really useful to make sure they are more energy efficient. So, for example, shopping online can save you a lot of energy or doing tasks in sitting as well.”

Question 4: How can I manage work with my fatigue?

Rebecca Jeffcott, Occupational Therapist at the National Hospital for Neurology & Neurosurgery (UCLH), talks about different strategies for fatigue management and support in the workplace.

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    Rebecca Jeffcott, Occupational Therapist: “Another question that I get asked a lot is how do I manage work with my fatigue? It can be really difficult to remain in work when you’ve got neurological fatigue because it doesn’t affect just your physical skills. It affects your thinking skills as well. It can be useful to speak to your employer about your fatigue, so that adjustments can be made to help you remain productive in work. Some of the main strategies that we advise on are making sure you’ve got regular rest breaks set within your day, ensuring you’ve got good ergonomics to help you conserve energy at your desk space. It can be useful to talk through the activities that you find really draining, so that you can liaise with your employer about whether any adjustments to these activities or roles can be made. Think about your working hours and whether these can be adjusted to help you avoid rush hour and avoid you wasting some energy with your commute. There’s lots of schemes available, such as the Access To Work Scheme which can be useful for helping you get to and from work. And they can look at your workspace as well. And if you work part time, it’s useful to spread out your working days to make sure that you’ve got rest in between. Working from home options can also be useful to help you avoid the stresses of getting to work and save you some energy.”

Question 5: What should I be eating and are there any supplements I should be taking?

Dr Gita Ramdharry, Consultant Allied Health Professional at the National Hospital for Neurology & Neurosurgery (UCLH), shares general advice on having a healthy varied diet. Dr Aisling Carr, Consultant Neurologist at UCLH, talks about nutritional supplements.

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    Dr Gita Ramdharry, AHP Consultant: “I get asked a lot by people about what should I be eating. Are there any supplements that will help my condition? And certainly as well as keeping fit my general advice is to have a healthy varied diet, so with lots of fruit and veg, high fibre, not too much sugar, and too much fat. And certainly there’s an issue with alcohol, I think, because if people’s balance is affected by their condition, then we know that alcohol will make your balance even worse and it might give people more risk of falls. It’s just about being sensible. But that’s the general advice I give nothing too much more specific, but you might have more.“

    Dr Aisling Carr, Consultant Neurologist: “So there are some extremely rare conditions where particular nutritional supplements can affect and improve the muscle or the nerve function. These are prescribed by your specialist doctor and are only given once we understand the exact mechanism of the process which has affected the nerve or the muscle. As well as that there are some nutritional supplements which can actually harm the nerves or the muscles. The general advice I give is exactly what Gita has just said. Eat a general, healthy, varied diet. Be wary of even some over the counter multivitamins because some can contain a high proportion of vitamin B6 or paradoxine, which can cause damage to the nerves at high concentrations. You also need to be aware of the potential for nerve damage with a very strict vegan diet which can be extremely low in B12. Your doctor, when they assess how you present with nerve or muscle symptoms, will test specifically for the levels of the potentially causative nutritional deficiencies and prescribe appropriate supplementation if indicated.”

Question 6: Why should I exercise?

Charlotte Massey, Physiotherapist at the National Hospital for Neurology & Neurosurgery (UCLH), talks about three general types of exercises, the effect they have and how often you should be exercising.

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    Charlotte Massey, Physiotherapist: “One of the questions we frequently get asked in clinics as a physiotherapist is why should I exercise? What can exercise do for me if I’ve got a neuromuscular condition? So first of all, we need to think about what inactivity can cause. So if you are inactive, especially somebody with a muscle wasting condition, you can get further loss of muscle bulk. You can have reduced stamina. You can have increased levels of tiredness. You can have muscle and joint pain. You can have weight gain. And you can have a decrease in your bone density. So how can exercise and activity increase and reduce these problems? So, it can make use of your good and effective muscles. It can help improve heart and lung function that can help prevent or reverse some of your physical deconditioning. It can help reduce pain. It can help increase your or maintain your joint range of movement; and it can help prolong your ability to perform some functional activities.”

Question 7: What type of exercise should I do and how often?

Charlotte Massey, Physiotherapist at the National Hospital for Neurology & Neurosurgery (UCLH), talks about three general types of exercises, the effect they have and how often you should be exercising.

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    Charlotte Massey, Physiotherapist: “Another question we frequently get asked is what exercise should I do? So, there are several different types of exercise and I’m going to split them up and talk about them in a little bit more detail. Firstly, we have aerobic exercise so that’s any activity that raises your heart rate or your rates of breathing. So examples of this include things like swimming, things like walking, things like pedalling on a bike or a cycle type machine. So for the general population, the Department of Health advised that people do 30 minutes, five times a week. Suggestion to start with, if you have a neuromuscular condition, is to start with doing 10 minutes. But I think it’s really important to try and maintain some kind of activity every day, some activity for about 10 minutes that will increase your heart rate, whatever that may be. The other important thing is to try and choose something that you enjoy because it will help you want to continue with it. The next type of exercise is strengthening exercise. This includes things like using small weights or elastic exercise bands such as therabands. We tend to advise that people with neuromuscular conditions do low to moderate strength resistance training and that these are safe in most neuromuscular conditions. However, it’s always best to discuss with your physiotherapist or seek specialist advice from a physiotherapist before embarking on a new exercise programme. Another top tip we often give is to rather than increase the weight as you improve with an exercise, is increase the number of times you’re doing it. So increase the number of repetitions. The next type of exercise is stretching. So, because of your condition you may have some stiffness around your joints or if you are in a certain position for a lot of the day. So stretches can be completed either with the support of family members or carers to try and stretch out your limbs or there are stretches that can be done on your own. Again, it’s good to seek advice of a physiotherapist who will be able to advise you on the best stretches for you. The next things to think about is frequency of exercise. So how often? And as we’ve previously said, it’s important to do some sort of activity every day. And aiming to start with for approximately 10 minutes. How hard should you be working? That’s something we’ll talk about in the next video. And there are some precautions to doing exercise, so it’s always important to discuss with your medical team or your physiotherapist before starting a new exercise programme.”

Question 8: What are Top Tips for exercising?

Charlotte Massey, Physiotherapist at the National Hospital for Neurology & Neurosurgery (UCLH), shares her Top Tips for exercising with a neuromuscular condition including how hard you should be working and precautions.

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    Charlotte Massey, Physiotherapist: “So, here are some Top Tips for exercising with a neuromuscular condition. As we’ve said in previous videos, it’s important to discuss with your medical or physiotherapy team before you start any new exercise. So, getting started. It’s important to choose is an activity that you enjoy and that you like doing. This will ensure that you continue it and keep going with it. The other thing to do is make sure you choose something that can fit in around your daily life. So something that you can fit in at a certain time of day and that works with the other things that you’re doing, whether that be your job or other commitments. It’s important to start any new exercise off slowly and think about doing completing short sessions to start with. When you’re planning your exercise, something that may be strenuous, it’s important to include a warm-up and a cool-down and also think about mixing and matching your exercise. For example, if you do a long walk one day and your legs may feel a little tyred. The next day, think about doing this strengthening programme looking at your arms to ensure you’re not overloading one body part. Regarding intensity of exercise, when you’re completing any aerobic exercise such as walking, you should be a little out of breath, but you should still be able to complete a conversation. When you start a new strengthening exercise programme, you will expect a little bit of aching and muscle soreness afterwards. However, this should stop after about 48 hours. There are a few precautions to exercising. Firstly, do not exercise to exhaustion. So you need to be able to recognise when it’s time to stop exercising and pace yourself. Also, take into consideration the other activities that you have to do on a daily and weekly basis to make sure that you have enough energy to complete both your exercise programme and your daily activities.”

Question 9: What type of shoes should I wear with splints?

Andrew Frame, Orthotist at the National Hospital for Neurology & Neurosurgery (UCLH), explains that the type of shoes to wear can be best recommended by your therapist depending on which type of splints you are having. In this video, he sets out general rules to follow that apply to most splints.

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    Andrew Frame, Orthotist: “Another thing we often get asked by patients is about what type of shoes they should wear with their splints. The type of shoes that would be best can be recommended by your therapist depending on the type of splint that has been provided. But there are some general rules that you can follow which apply to most splints. The first thing is that a lot of people find it helpful to go for a shoe which is a half size or a full size bigger. A lower splint shouldn’t make your foot any longer. Sometimes that is slightly longer than your foot and it just makes it easier to get your foot into the shoe, if you’ve gone up a shoe size. Another thing to think about is getting a shoe with a removable insole, which is really common in issues like trainers or in walking shoes. And this insole can usually be just left either straight out, or sometimes has a little bit of glue on the bottom that has to be unpicked. But once this is taken out, it gives you that extra depth for the splint in your shoes so it doesn’t change the size of your shoe inside and should make it easier to get your foot in without making the shoe too tight. And another thing to mention is thinking about the width of the shoe. So when you put the splint in the shoe, you need to make sure that the shoe is wide enough to accommodate the splint and your foot. This can be checked by looking at the inner sole of the shoe and by also getting a shoe which either has laces or Velcro? And that where you can actually expand the shoe slightly on top. There are some other things to have to think about, such as looking for a shoe which has a firm heel counter and a good sole on it. You don’t want to have a sole that is too narrow.”

Question 10: Does wearing an Ankle Food Orthosis (AFO) make muscles weaker?

Kate Bull, Orthotist at the National Hospital for Neurology & Neurosurgery (UCLH), talks about different types of AFOs and their impact on muscle strength.

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    Kate Bull, Orthotist: “A lot of our patients ask us whether when we give AFOs, it will make their muscles weaker. This question has to be considered individually, really, because everybody moves very differently. Even two people with the same condition will have very different weaknesses. And the amount that the AFO changes your walking would depend on the stiffness of it and there are many different types of AFO. However, generally we find that with a very stiff AFO it will stop your ankle moving and that can weaken the muscle at the time of walking at the front of your calf. So stop that muscle working as much. However, just as many patients will have an improvement in the activity of that muscle because the AFO is able to lift their ankle up, so that muscle is in the right position to work. Generally, we won’t give a very stiff Ankle Foot Orthosis, which will restrict movement unless somebody very much needs it and they’re not using that muscle very much anyway. The other benefit of an Ankle Foot Orthosis that can put your ankle in the right position to walk means that your heel goes down first and that the alignment of your knee and hip improves and that can actually improve the strength of your quadriceps and gluteal muscles and improve your posture and have lots of benefits in terms of strength of muscles further up your leg. The AFO will only be prescribed to you if you have a goal. And if you’re tripping and walking less than you’d like to, then we find that the strengthening effects of improving your walking distance actually far outweigh the potential negative effect of reducing the range of your ankle.”

Question 11: What is the risk of passing my neuromuscular condition on to my children?

Dr Aisling Carr, Consultant Neurologist at the National Hospital for Neurology & Neurosurgery (UCLH), explains that when you are dealing with an inherited or genetic cause, it is critical to know which exact gene causes the disease before it is possible to explain what the risks to your children are. She also shares sources where you can explore this for your particular condition.

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    Dr Gita Ramdharry, AHP Consultant: “So Aisling, sometimes in my clinics, people ask me, can they pass this on to their children and if there’s a risk of that, what can they do about it?”

     

    Dr Aisling Carr, Consultant Neurologist: “That’s something that comes up very, very often, especially at diagnosis, so oral presentation. So it very much depends. Here we’re talking about all of neuromuscular conditions. So any of the conditions that can affect your nerves or muscles. There are some that are inherited or caused by mutations in specific genes. And there are some that are completely unrelated to your genetics and are much more sporadic and random. Your doctor should explain this to you at diagnosis. When you are dealing with an inherited or genetic cause, we need to know the exact gene that has caused the disease in you before we can explain what the risks to your children are. If you wish to explore this for your particular condition, an excellent resource is the regional genetics service. The genetic service usually is run by clinical geneticists and it works in parallel with a broad range of medical specialties, including neuromuscular diseases. These clinics are designed to explain the complexities of genetic inheritance. Also, the risk that an individual who is related to someone with an inherited disease may have of also inheriting that condition and the potential risk, but also the options there are to manage risk in children. If you wish to explore this, even if you are completely unaffected by the neuromuscular disease and someone in your family has recently been diagnosed, you can ask your GP to refer you to the regional genetic services.”

Question 12: Where can I get extra support?

Dr Aisling Carr, Consultant Neurologist, and Dr Gita Ramdharry, Consultant Allied Health Professional at the National Hospital for Neurology & Neurosurgery (UCLH), share their recommendations for charities, support groups and specialist clinical services.

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    Dr Gita Ramdharry, AHP Consultant: “So when I’m in clinic, I’m often giving advice and information about where people can get extra support. So, one good place to start is actually in the charities. There is some excellent patient support groups around. A big one in the UK that covers all neuromuscular conditions is Muscular Dystrophy UK. They have a very good advocacy service. They have some pots of money for equipment and that sort of thing. And they campaign and raise money. They also have a very good network of neuromuscular care advisors. So each region will have somebody often linked to one of the specialist services, but they’re a good person to look out, if you’ve got some specific questions. Within Muscular Dystrophy UK, there’s a big network of smaller patient support groups and charities that are linked to specific conditions. So, for example, there’s the Charcot-Marie-Tooth disease UK charity. There’s the GAIN charity for people with inflammatory neuropathies. There’s Myaware for people with Myasthenia Gravis. So you can go on to the MD UK website and have a look for these individual charities. Or you could just go onto Google and see, put the name of your condition in, and see if there’s a support group that’s associated with that.”

     

    Dr Aisling Carr, Consultant Neurologist: “And although neuromuscular diseases are rare, there is a structure within the NHS that provides specialist services to this cohort. It’s organised regionally. So, in each region there should be a neurology consultant with a specialist interest in neuromuscular diseases. These consultants usually have clinics based in the Regional Neurosciences Centre. Your GP should be able to find out where this is in relation to you. There are a smaller number of highly specialised services which are run either nationally or spotted at supraregional centres across the UK, including Newcastle, Oxford and London. Each regional service will also have clinical nurse specialists and physiotherapists and allied health professionals with a particular interest in the neuromuscular disease patients.”

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