Getting Older

Our bodies go through lots of changes as we get older – that’s true for everyone. When you have spina bifida/hydrocephalus, there may be some extra things to think about.

To get the right treatment and support, it’s important not to make assumptions about any physical changes you notice. They could be normal age-related changes, or they could be connected to spina bifida/hydrocephalus, or a bit of both. See your doctor so they assess you and give you the right care.

The information here covers:

• Mobility
• Safe transfers
• Falls
• Menopause

Mobility 

One survey found that nearly 8 in 10 people with spina bifida report declining mobility as they get older, often starting around the age of 35. This can happen for many different reasons, including:

• pain
• inactivity
• upper body issues
• weight gain
• lymphoedema (severe swelling in your legs)
• balance problems
• lack of support to stay mobile
• osteoarthritis and osteoporosis, which are both more common in spina bifida

Mobility problems can have a huge impact on your life. They may affect your ability to work, socialise, have hobbies and be independent – even a short trip to the shops can become difficult.

You may become more isolated and lose confidence. If you go out less often, that may affect your mobility even more because it’s likely to mean you’re moving less. This can become a cycle, so it’s important to get the right support to reduce the impact of mobility issues on your daily life.

Improving and maintaining mobility

Remember: You know your body best. If any of the advice or the exercises suggested below feels too much then do not try to attempt them without speaking to your GP first.

If you’ve noticed a decline in your mobility or overall fitness, contact your GP surgery to refer you to a physiotherapist or for advice on how you can refer yourself . They can assess you, check you’re using the right mobility aids, and suggest exercises to help improve your strength, balance and flexibility.

If you have some ability to walk, good balance can keep you mobile and give you greater confidence with your walking. If your balance is poor, falling can become a very big risk. It’s important to try to avoid falls – as well as the risk of serious injury and hospitalisation, having a fall can knock your confidence and may have a further impact on your mobility.

Here are some links to exercises to support your balance skills:

• Exercises for issues with balance and walking
• NHS Balance Exercises
• Improve your balance and stability workout

Staying flexible means you are less likely to injure your joints and can keep you moving your muscles in a bigger range. This is known as range of movement, and having a bigger range of movement means you can move your arms, legs and other parts of your body to a much larger degree.

• Exercises like yoga can help keep you flexible – try this link for some seated yoga exercises

Working on your strength is also important for keeping you mobile and independent. If your muscles become weaker, walking and moving becomes more difficult and puts you at a much higher risk of falling. Some people with spina bifida have a higher risk of ankle weakness so keeping the ankles strong is important to help avoid falls, help you transfer safely and keep you moving safely.

• Seated Pilates Workout 
• NHS Strength Exercises
• This link is an exercise for ‘core’ muscles. These muscles, around your stomach area, are needed to help you keep good sitting balance
• Wheelchair Burpees - YouTube. This film details an exercise for wheelchair users who are able to transfer safely from one surface to another. If you are attempting this for the first time, please make sure you have a friend or relative with you for safety reasons.

Remember: if you have concerns about ankle weakness or any other aspects of your body’s condition, always consult your GP, who can make a referral to a physiotherapist for proper assessment and appropriate exercises or give you advice on how to refer yourself

Read more general information about fitness and nutrition

Safe transfers and adaptations 

As many people get older, they find that they can struggle to do some of the day-to-day things they managed before. This can range from showering, bathing and getting on and off the toilet to doing things safely in the kitchen.

Some studies have found that as they get older, people with spina bifida and hydrocephalus can find daily activities becoming more difficult at an earlier age compared to non-disabled people.

As you get older, your ability to transfer may be affected by a few different things, including:

• upper body issues, including neck and shoulder pain, and difficulty using your hands
• lymphoedema, which can make legs heavy and affect movement
• lack of practice – if parents/caregivers have always helped with transfers, you may not be used to doing it on your own

If you start to find daily activities more difficult, you’ll probably need help from specialist services, accessed through the NHS.

Getting support from an occupational therapist

• Occupational therapists are healthcare professionals who specialise in helping people with all sorts of medical conditions and disabilities, so that they can stay independent and do the things they want to do.
• Your GP can refer you if you need help with daily activities. The occupational therapist can visit you at home to see exactly what support you need.
• You may need a piece of equipment to support you, or the occupational therapist may suggest an adaptation you can make in your home.
• The types of equipment and adaptations are varied and what you need will depend on what exactly you’re having difficulty with. When the occupational therapist meets with you, they will discuss this with you and talk you through options for suitable equipment and adaptations to meet your exact needs.

Here are some examples:

• If you’re having difficulty standing up from your toilet, or you feel unsafe doing so, the therapist may talk about giving you a specialist frame or seat which can sit in front of or over your toilet. This will usually have handles or be higher up than your own toilet.
• Many people find it harder to get in and out of bed as they get older. A rail on the bed to hold on to for support may be helpful.

Falls

Everyone’s at higher risk of falls as they get older, but for people with spina bifida/hydrocephalus, falls may start to happen at a much younger age than average.  

This can be because of other symptoms that affect your mobility, balance and strength, such as pain, osteoarthritis and upper body issues. Continence issues can be a cause of falls, too, as you may try to rush to the toilet urgently.

Having a fall can be scary, whether it happens inside or outside your home. It can also lead to other problems, such as broken bones, which may make pain and mobility issues worse.

Preventing falls

See your GP for support with underlying issues that could be raising your risk of falls.

A physiotherapist can suggest exercises to work on your strength, flexibility and balance, which may help to prevent falls.

It’s also important to have the mobility aids you need, and to make sure your home environment is as safe and supportive as possible. An occupational therapist can assess you and your home, and may recommend adaptations and equipment to help.

Getting up from a fall

If you do have a fall, try to stay calm and keep warm. Take a few moments to assess your situation. It can take a short time to work out whether you’ve hurt yourself – loss of sensitivity can also mean you don’t feel pain in the same way. If you’re in pain, or struggling to get up, call for help.

The best way to get up from a fall depends on your muscle strength and general flexibility – a physiotherapist can show you a way that will work for you. You could practise the technique they show you in different rooms of the house, so you feel more confident you can do it wherever you are in your home. It’s best to have someone else there with you while you practice.

NHS Inform has general guidance for getting up from a fall – but remember the advice may not be right for you personally.

Menopause

Technically, menopause is your last ever period, and on average, it happens between the ages of 45 and 55, though it can be earlier or later than this for some women.

In the years before your periods stop completely, you go through a transition phase (perimenopause). This typically starts in your forties, and you may have symptoms including:

• anxiety, mood swings, low mood, problems with your memory and low self-esteem
• changes to your periods – they may get shorter or longer, closer or further apart, and may be heavier, especially earlier in the menopause transition
• physical symptoms, such as hot flushes, night sweats, heart palpitations, vaginal dryness, and joint and muscle pain

For some women, symptoms are severe and get in the way of daily life. For others, symptoms are so mild they barely notice them. Menopause can be different for everyone.

However, when you have spina bifida, some symptoms may be harder to manage. For example:

• heavy periods and “flooding” are common in the run-up to menopause, and it can be a challenge to deal with sanitary protection if you’re a wheelchair user
• dryness in the genital area may make catheterisation more difficult and raises the risk of UTIs
• mobility issues can mean it’s harder to control your environment – for example, if you have night sweats, you may not be able to throw off the duvet or change your bedding very easily

Care for yourself in menopause

There’s been no research on menopause in women with spina bifida/hydrocephalus, but these points may help you to cope and look after your overall wellbeing.

• Talk to your GP about hormone replacement therapy (HRT) – many women find it helpful for easing symptoms. If dryness in and around your vagina is the main problem, ask your GP or pharmacist about vaginal pessaries containing oestrogen. This is still a form of hormone replacement, but it only works in this area and doesn’t get into the rest of your body, so the risk of side effects is low.
• Go for all your recommended health checks, including cervical smears and mammograms – for all women, the risk of cancer rises with age.
• Make sure you get enough vitamin D and calcium for bone health. After menopause, the risk of osteoporosis (weak bones) rises because you lose the bone-protective benefits of oestrogen. As spina bifida also raises your risk of osteoporosis, it’s very important to make sure you get enough of the nutrients your bones need – speak to your healthcare team if you’re not sure. You can read more about a healthy diet here
• Take regular exercise in whatever way you can – it helps to boost your mood, reduce anxiety, improve sleep, manage weight and strengthen bones and muscles.
• Prioritise sleep – try to go to bed and get up at regular times, keep electronic devices and bright lights out of the bedroom, and have a routine to help you wind down before sleep. This could include light stretches, reading, listening to soft music and mindfulness activities. You could try this guided mindfulness exercise to help you relax.

Getting the support you need

Healthy ageing is likely to involve working with different healthcare professionals, including physiotherapists and occupational therapists.

If you’re having trouble accessing the help you need, SBH Scotland can help you advocate for yourself and give you advice on talking to your GP.

Call the SBH Scotland Helpline on 03455 211 300 or you can fill in our form to get in touch with our support team