Identifying mobility problems early on can be really helpful when it comes to preventative treatment and prolonging the use of certain muscles. In this article we talk to Jody Barber about common mobility problems in MS. Jody has worked as a physiotherapist with people with MS for around 30 years. She is co-Chair of the Therapists in MS group (TiMS).
Mobility problems can be common in MS. What are the early signs people should look out for?
The earliest symptoms are usually temporary sensory changes. For example, this might mean that you’re less aware of where your foot is on the ground when walking. This can be unnerving and make you cautious about how you move. When you feel something is wrong, instinctively you won't use it as much. If you don't use something, it will get weaker over time. A physiotherapist can't bring the sensation back, but we can look at how you manage it and ways of maintaining your muscle strength. If you start noticing these symptoms, don’t ignore them. Talk to someone about it. There's lots of advice and help available.
Many people with MS worry about starting to use a mobility or walking aid. How does someone know it’s the right time to introduce one?
A lot of people are understandably wary of using a stick, walking frame or any form of walking aid. However, the aid is all about enabling you to carry on doing things that were becoming a struggle. It’s a tool that helps you to get out and about. As a first step, I advise people to have a fold up stick in your bag. Then you can have a moment of fatigue or a wobble when you're out and you have something available to support you. One of the signs that you might need something more permanent is noticing that you’re always holding on to something when moving around the house. Therapists might call that furniture walking. If you’re doing this a lot, you might benefit from a walking aid.
What advice do you give to people who are considering using a wheelchair?
I encourage people to have early conversations about wheelchairs. Talk to your family, friends and healthcare professionals. Discuss what you’re currently able to do and the ways you might access a wheelchair in the future, if you feel you need to. You may get to a point when intermittent use of a wheelchair will help you. For example, it could prevent you from getting too fatigued, giving you more energy to do the things you want to do. There are lots of places where you can borrow a wheelchair for a period. This can be useful if you're going on holiday with family or friends and are worried about keeping up with them. Often, people then realise that they were able to do more family activities with a wheelchair, whereas previously they would have missed out.
There are lot of different mobility aids available. How do you decide what's best for you?
With walking sticks there are different types of handles to consider. If you're purchasing one or being provided with one from the NHS, make sure it has comfortable handles for you to hold on to. There are some that are moulded, called Fischer sticks, which have a left- or right-handed handle. I personally like those because they enable you to have a better interaction between your hand and the stick and they encourage a more comfortable and effective hand hold. If you’ve got intermittent hand numbness or sensory loss a Fischer stick might be a better option than a standard one. Rollators are another device which are readily available. They are three or four wheeled walking devices, which help to provide support. Some of the three wheeled ones have casters, so they turn and move quite quickly, but they're also a bit more stable than two sticks. There are mobility shops located around the country where you can try out scooters, wheelchairs and walking aids to find what works best for you. These centres have experienced staff who can advise on the equipment available and what may work best for you.
How do people go about funding mobility aids?
Some of them can be quite expensive. This will differ between NHS providers. Some will have an equipment budget and be able to purchase small bespoke items, whereas some will have a list of what they can provide. Often the functionality of the aid is the same as, or similar to, more expensive items, but the look may not quite be what you want. So, if you want a different a look or colour, you might need to purchase it yourself.
Do you have any advice on the best way to use your mobility aid?
Try not to push down and rely on your arms too much. The more you push down on the walking device with your arms, the less work your legs are required to do. Pushing down on the frame or walking aid too much will cause your arms to feel tired. Your leg muscles store a lot of energy and power, so if you don’t use them, you won’t burn as many calories. If your leg muscles aren't working as hard, they will get weaker over time. Your balance may also be challenged. One useful exercise is to have your rollator in front of you and hold it lightly. Gently roll it away and back with the lightest finger touch possible, whilst keeping your balance. Make sure you have something soft like a bed or chair behind you in case your legs give way. This is a good way to test if you're pressing down and putting a lot of weight through your arms. By doing this you can test yourself in a safe place, in a safe way. If you do notice you’re overly relying on your walking frame, there's usually a reasonable margin of time in which you can recapture some of that strength. The muscles may not have been exercised, but they're still there and a physio can help you exercise them and recapture some strength. They can boost your balance and muscle strength. There's an awful lot that can be recaptured. It's not all lost. It's just knowing how to do that and where to start.
Where would you direct somebody who hasn't been doing any exercise? How would they go about starting to exercise?
One of the advantages of the pandemic is that an awful lot of exercise classes have been converted to online resources, making them really accessible. If you're not used to doing any exercise at all, then start with the seated classes first. A seated class will involve a lot of arm exercises, which will strengthen your trunk. This will improve your ability to stand without holding on. The key with exercise is to find something you enjoy. Sometimes you might have to go through a little bit of discomfort to change your habits. If you’re not enjoying it after giving it a good go, then look for something different. There are lots of choices available, so find one that agrees with you. We're all different. Some of us like really prescribed exercises that we follow and some of us like more of an activity. For example, it could be a specific exercise class with instructions like ‘Now lift your arm’ or it could be an activity such as archery or dance. As the world is opening up a little bit more, there are gyms that have specialist exercise classes, so find out what your local gym is offering. Mix it up and shake it up! I'm a firm believer that you should try new things out and learn new things. You get a huge endorphin and oxytocin release with exercise anyway.
Finally, what would you list as your top tips for maintaining mobility?
- Using a walking aid isn't necessarily the beginning of the end, it's a way of enabling you to do more.
- With walking aids you’re relying on them a little, so think about exercises that can enhance what you still have by making the muscles work a little bit harder. This will help you to avoid losing them.
- Talk about the elephant in the room! Talk about your feelings with friends, family and your health professionals.
- Think about what it gives back not what it takes away.
Despite all these tips, I think it’s important to acknowledge that getting to the stage of needing a walking aid or wheelchair can be hard. I think acknowledging that it’s hard and having space to come to terms with it is really important.
For more information on walking difficulties visit mstrust.org.uk/a-z/walking-difficulties
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