Ageing and mobility

Shine's 1000 Voices Report asked our members over 25 years who have spina bifida to get their views on ageing with spina bifida. Little is currently known about how spina bifida affects the ageing process, and with so many of our members aged 40 or over, we think it's important to get answers to some of those questions. Read on to learn what was said about mobility and ageing...

We collected a great deal of information about the ways people get around. 17% of people walk everywhere unaided, but many people told us their mobility had changed over the years. Around 40 years old seemed to be the time of most change and was the most common age for starting to use a power chair. Two thirds of people had used a wheelchair for more than 20 years and one third of people who used sticks or crutches had done so for over 15 years. Wheelchair use and use of sticks can result in damage to the hands, neck and shoulders, and we looked at pain and use of the hands and shoulders, to see how they relate to equipment for getting around. People who walked unaided were more like to have no issues with their upper body, all other groups reported more pain and loss of use of their hands. Could starting to use a power chair earlier prevent some pain and loss of independence? We need to look into this more closely. 

Many people commented on how the change in mobility came at the same time as other health changes, like pain and weight gain, and we felt the frustration many people experienced as their lives changed, often very drastically. 

Leg movement had also reduced for many people, most commonly between 25 and 40, with a median age of 35. Members have often told us things began to change at around 35. Is wear and tear on tethered spine behind some of these changes? 

Balance difficulties can make going out very hard and create a lot of anxiety. The numbers of people telling us their balance had got worse over time increased from 32% aged 25-30 to between 80% and 94% in people 61 and over. Women were more likely than men to report increasing difficulties with balance (74% compared with 42%).  

We asked members about problems in their neck, shoulders and hands, such as difficulty moving them, or pain. Only 31% said they had no problems, with 45% having two or more problems. The most common age for upper body problems to start was 36-40. Many people said it made things harder and more painful, but it didn’t stop them doing anything. 30% of people said their hand movements were affected, which is concerning, since this could affect transfers and self-care, such as catheterisation, dressing or cooking. We couldn’t see any relationship in our members’ responses between upper limb issues and the length of time using manual wheelchairs or crutches, although we know that damage can occur. People in pain were more likely to exercise their shoulders after using their wheelchair or crutches.