Episode 42 is dedicated to movement restrictions caused by MS. Multiple sclerosis manifests itself in a wide variety of symptoms and can also affect your overall mobility. To be mobile, you need strength, coordination, balance and stretching. As soon as one or more of these building blocks are affected, your mobility decreases.
Find out more about how these disorders occur, when they appear, what you can do about them and what support is available.
One tip right from the start: the best thing you can do is buck the trend. So instead of restricting yourself and your life, try to exercise all your weak points regularly, but also take preventative action in the areas that are not affected.
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Table of Contents
When do restrictions in movement occur?
Many people with MS already experience movement restrictions of one kind or another at the beginning of their illness. If the disease remains active and is not stopped, these limitations increase over time. In the course of the disease, around 90 percent of all people with MS have problems with this. They can reduce your mobility more and more. Much earlier than it would normally be the case due to age.
How do movement restrictions manifest themselves?
There is often a combination of several components. The muscles become weaker. Mobility decreases due to spasticity. Motor coordination deteriorates. Balance problems and numbness in the feet make walking difficult. And on top of this, chronic tiredness (fatigue) can set in. Or you may experience a temporary deterioration due to the Uhthoff phenomenon when your body overheats.
But what does this mean in practice?
Muscle weakness
If you suffer from muscle weakness, you may find it difficult to walk because you can no longer lift your foot properly. Your arms may also be affected and carrying, holding or lifting may become a problem.
A common manifestation is foot lifting weakness, which causes you to drag your foot without any aids. Other patients lift the hip from the weak leg.
Spasticity
If you are affected by spasticity, your muscle tension is so high that your muscles cramp, harden and your movements become stiffer. Spasticity in the calf, thigh and trunk muscles in particular makes walking difficult.
Balance disorder
Balance problems can make wild games of catch with your children, dancing and even normal walking much more difficult. As they gain weight, many need aids to walk safely. Balance problems make walking more difficult in any case. Many walk with their legs apart to gain a little more safety and minimize the risk of falling.
Fine motor skills & tremor
With one or even two numb feet, you lack feedback from the ground and as soon as it becomes uneven, there is a risk of tripping and falling.
With numb hands, it becomes more difficult to grip and hold something properly. You may no longer be able to make targeted movements because your coordination is poorer. You notice this when brushing your teeth, getting dressed and undressed or when you try to open or close small buttons. For fine motor skills to succeed, different muscles have to work together perfectly and this can be made more difficult or even prevented by muscle tremors. You will then only be able to type very slowly on the keyboard.
Fatigue & Uhthoff phenomenon
If you also suffer from fatigue, it will be more difficult for you to compensate for disorders. This is because you will have less mental and/or physical energy from the outset. And if you do manage to compensate in part, this will probably increase your fatigue.
If your body temperature rises – in summer, when you go to the sauna, have a fever, etc. – The symptoms are exacerbated by the Uhthoff phenomenon.
What can you do if your movement is restricted?
Under no circumstances should you feel ashamed or withdraw. It’s not your fault that you have multiple sclerosis. But you can support your body in the best possible way by exercising regularly, seeking support and using aids where it makes sense.
After all, it’s your life and it should be as enjoyable and carefree as possible.
Occupational therapy and physiotherapy are important services that you can take advantage of. If you also exercise regularly on your own, from strength and stretching to balance and coordination, you can certainly make a big difference. And don’t be discouraged if you don’t see results for a while. The motto is to keep at it. After all, a lot helps a lot and the more variety, the better.
How can physiotherapy and occupational therapy help?
Physiotherapy
Your physiotherapist can support and guide you in many ways, depending on where your weak points are. Describe your problems in detail so that you can train specifically.
You should definitely strengthen your muscles, regardless of whether you suffer from muscle weakness or can compensate for limitations with muscle strength. This also makes sense as a preventative measure, especially as few people use and train their muscles in everyday life these days. It is particularly important to activate your muscles again if you spend a lot of time working in a seated position.
If you have spasticity, your physiotherapist can help you to stretch and relax the affected areas in a targeted manner. In general, stretching is an important training element in order to make your body more flexible again. And this is immediately followed by fascia training.
Balance exercises almost always include strengthening and can improve your coordination. I’ve come across some complicated ones that train your head at the same time. This saves time and increases the training effect. If it is too difficult for you, your therapist can certainly shift down a gear and reduce the complexity.
Targeted gait training is possible if required. Depending on your condition, this can be done freely in the room, on a treadmill with a bar on the wall or with other aids.
Incidentally, you should always train in an area where it is strenuous, but not too demanding. Then it’s just right. When it comes to balance, an exercise is too easy if you don’t wobble at all. But it is also too difficult if you always fall over straight away.
If you manage to do additional training in your free time, this will increase the training effect. You will see progress more quickly or, if you are more affected, you will be better able to maintain your level.
In addition, endurance comes before speed when training if you are not involved in competitive sport and need this speed. After all, being able to run a longer distance in one go is more beneficial than a short sprint.
Occupational therapy
Occupational therapy tries to help you cope with your everyday life. The primary goal is for you to relearn the skills you have lost. If this is not possible, the aim is to find the best possible compensation.
For example, special exercises are used to train your fine motor skills or stimulate nerves in numb hands or feet.
There are many activities that you can do better again thanks to occupational therapy. These range from writing by hand or using a keyboard to coordination training so that you can grip and hold objects better.
Unhealthy postures should be trained away, your trunk stabilized and your sense of balance trained.
If your hand strength is too low, this can also be trained. The scope is really very broad and it’s worth finding out more. Incidentally, occupational therapy is generally a recognized form of therapy and services prescribed by a doctor are covered by health insurance in many countries.
How can you train your own strength, balance, coordination and agility?
I was able to try therapeutic climbing for the first time during my rehab and it was great. Because it combines a lot of things. You need strength, you have to be well stretched, you have to be able to keep your balance, you have to be able to make complicated moves and you have to be very focused. It was great and I really enjoyed noticing the small improvements you can make from time to time.
For strength, you can of course do specific exercises at home or in the gym. Always remember that free exercises with your body weight have the huge advantage that you train all the small muscles as well. With guided exercises on a machine, you usually only need the large muscles.
For balance exercises, you can train really well with a ball seat cushion and a balance pad seat cushion. You will usually be provided with a few exercises or you can ask your physiotherapist for them. Try to train in such a way that you get wobbly but don’t risk any accidents. If the exercises are too easy for you, try looking around the room with your eyes or moving your head to increase the difficulty. And if you are having great difficulty, stand close to a wall that will give you enough stability if necessary or place mats on the floor next to you.
Sports such as yoga, tai chi or qigong also train your balance and can help you to become more relaxed internally, which in turn reduces the stress on your body and mind. This is because stress often exacerbates the symptoms of MS.
Meditation, progressive muscle relaxation and autogenic training can help you with an unsteady gait or trembling during conscious movements. Try out what suits you best. You may also use a different relaxation training depending on the situation.
What medication is available for movement restrictions?
Gait disorders can be treated with medication. You will achieve the greatest success if you also carry out intensive gait training with your therapist.
If spasticity hinders your mobility, antispastic drugs can help you. Talk to your neurologist about this.
Sometimes mild spasticity also helps you to continue walking despite weakened muscles. In this case, you do not want to completely eliminate the spasticity. In any case, you should use physiotherapy and, if necessary, occupational therapy.
No medication can replace movement and stimulation.
Unfortunately, balance and coordination disorders cannot yet be treated with medication.
What aids can be used for restricted movement?
The range is extensive. It is clear that you should understand assistive devices for what they are – a means to make your life easier. So please don’t be ashamed, but be grateful for the support they offer you.
There are special splints that make walking easier, forearm supports, walking sticks, crutches, rollators and wheelchairs in a wide variety of designs. Bear in mind that all of these aids are designed to prevent you from falling and also enable you to continue to be mobile and thus participate in your private and professional life. You are probably also significantly faster on the road.
For cycling, the choice ranges from e-bikes and tricycles with or without electronic assistance to handbikes. And cycling in the fresh air is great, refreshes the mind and recharges your vitamin D stores.
If your fine motor skills are impaired, you can use a large-area keyboard. The keys are further apart, which makes typing easier and reduces the number of typing errors.
Special cutlery that is thicker and weighted can also be helpful if you have problems with coordination or tremor.
Are there surgical options?
A very severe tremor can in principle be operated on. However, surgery should always be the absolute last step. Please think very carefully beforehand, seek advice from your neurologist and possibly get a second opinion.
First of all, make use of all non-invasive methods and aids.
During the operation, a sonde is inserted into the corresponding area of the brain, which includes a pacemaker. The impulses sent out ensure that the tremors are reduced or stopped.
And if the movement restrictions remain permanent?
Then don’t be sad and unhappy about it for too long, but try to live with the symptoms as best you can. Make intensive use of the physiotherapy and occupational therapy on offer to maintain your level and compensate for the limitations or quickly get to grips with any aids you may need. Unfortunately, doing nothing will only make your situation worse.
Train and be proud of everything you achieve, how well you keep at it and how mentally strong you are. And if you’re not so strong at the moment, seek help from a support group, talk to others on a social media platform or use the services offered by local or national patient advocacy groups for multiple sclerosis. Find out which people, exercises and relaxation techniques are good for you.
What is the best prevention against movement restrictions?
It has been proven that the best prevention is the rapid initiation of a disease-modifying therapy with the aim of stopping or significantly slowing down the progression of MS. Several efficacy categories are available for this, from mild to active to highly active disease course.
If you are taking a disease-modifying therapy and still have relapses or new lesions on MRI, the recommendation is to move up one efficacy category. More and more neurologists prefer the strategy of initially starting with a very effective therapy if the indicators suggest it and only switching to less effective therapies later in life. This is because MS usually becomes less active with increasing age, as the immune system and thus also the autoimmunity become weaker.
Within each efficacy class, there are several treatment options that allow a certain degree of choice in terms of the form of administration and possible side effects. In addition, some medications can be ruled out from the beginning for women who wish to have children.
You can also achieve a lot with a healthy lifestyle. This includes exercise, nutrition, a stable psyche and being integrated into the social fabric. Drinking less alcohol and avoiding nicotine are also important factors.
So, there is a lot you can do, make the most of your opportunities and enjoy your life as much as you can.
Food for thought
Turn on your favorite music at home and dance. Just for yourself. It doesn’t matter if you only imagine dancing and the movements only take place in your head. This also sends impulses and can make you happy. And the more movement you can do, the better. Move your head, your hands, your arms. Tap your feet, take a few steps and ideally sing along. It can make you so happy and is a great workout. But please don’t get so excited that you hurt yourself. Do everything to the extent that you can, for yourself and without your inner critic. Because it’s beautiful and dancing makes you happy.
Question to you
Have you already had problems with a lack of strength, increased stiffness, balance or coordination?
See you soon and try to make the best out of your life,
Nele
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Click here for an overview of all podcast episodes published so far.
See you soon and try to make the best out of your life,
Nele
For more information and positive thoughts, subscribe to my newsletter for free.
Click here for an overview of all podcast episodes published so far.
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