Wearing AFO splints as an adult with cerebral palsy

An ankle foot orthotic (AFO) is often a plastic splint which offers leg support to people with cerebral palsy (CP) or a condition that causes foot drop. More commonly, it’s children who wear AFO splints.

I have mild cerebral palsy and I’ve worn AFO splints on and off my whole life. I initially wore 1 AFO on my left leg as a child. After a deterioration in my walking, I started to wear 2 AFO splints as a young adult. Despite my walking being unrecognisable from when I got AFO splints again, I continue to wear them. 

Types of AFO splints

AFO’s and the medical model of disability

The medical model of disability suggests that disabled people need fixing. I believe AFO’s are often given as a way of ‘fixing’ us. They are seen as a support that someone wears short-term to stretch the muscles in their legs. But why aren’t more people offered AFO’s as a long-term solution that provides stability?

The medical model of disability (The alliance for inclusive education)

For example, there are many different types of AFO splints and they offer different levels of support. From my experience, the physiotherapist or orthotist will give you just enough support and then slowly reduce this as you get stronger. The end goal is that you no longer need AFO splints. 

While I understand the logic, I believe this to be misleading, as well as ignoring the individuals quality of life and offering them a choice. I grew up wearing AFO’s and the level of support was reduced over time. This did reflect my progression and I was so happy to be told I no longer needed them. While my excitement was probably tied to the fact that I disliked AFO’s, it also highlighted that I had completed the task they set out. I was now ‘fixed’.

But here’s the catch, their attempt to fix me with AFO splints didn’t fix the cerebral palsy. As a young child, I thought this was the case. Surely that’s what all the hard work was for?

Read more: Shoes and splints: A guide to find footwear for AFO’s

Starting to wear AFO splints again

At around 16 years old, I started wearing AFO splints again. This was due to a deterioration in my physical health. Back then I was using a wheelchair more and I was falling a lot. My point being, I wore AFO’s again when I had no choice and I really needed them. I wish they would have given me the support I needed at the start of my deterioration, rather than wait until I had hit rock bottom. In my opinion, adults with cerebral palsy are not prescribed AFO splints as a way of long-term management, it’s seen as a last resort.

This is probably due to the fact that all support for people with cerebral palsy stops at the age of 16 or 18. An adult with CP is left to figure it out, cerebral palsy is seen as a childhood disability and childhood is the time when you have the medical intervention to ‘fix’ you.

Support for adults with cerebral palsy

Cerebral palsy does not disappear in adulthood. If anything, this is when new challenges and physical limitations set in. Adults with CP often get post impairment syndrome and experience new symptoms as a result of having CP. While the brain damage itself will never change, the wear and tear of moving with spastic muscles causes damage, pain and fatigue. 

Post impairment syndrome and cerebral palsy (Scope’s online forum)

Luckily for me, I was given a new set of splints just before I was discharged from paediatrics. However, it’s been 7 years and these are still the splints I wear today. I’ve had the straps repaired a few times by a local cobbler due to long waiting times and newly made AFO splints not being as effective. In my opinion, this is due to adult services not taking the time to learn what a patient needs.

If my AFO splints completely break, I don’t know if I’d be able to get another set that work for me. While the NHS do offer AFO’s for adults, the medical model approach and the lack of funding makes it tricky. I’ve previously waited 18 months for a new pair that turned out to be unwearable. As a result, I would seriously consider going private if I needed new AFO splints.

I feel like I came across wearing AFO as an adult by mistake. If I hadn’t deteriorated as significantly as I did, it wouldn’t have been an option, even if it could have benefited me. Which makes me wonder, how many other adults could benefit from AFO’s?

Why I continue to wear AFO splints

My walking has drastically improved over the years and that is because of the AFO splints offering a high level of support that has enabled me to walk further then I previously could. I find my walking is often better in summer with the warmer weather, but on the whole this is what my walking is like without AFO splints:

• walking on my toes (often with a limp)
• feet and knees turned inwards
• leaning significantly on my stronger right side
• unable to walk very far
• more pain in my knees, hips and back

Read more: “Trainers never matched my aesthetic”: The emotional impact of wearing AFO splints

If I was to have an AFO splint with less support, like a hinged splint, it would affect how far I can walk and I would probably be in more pain. For me, I’d rather wear bulky AFO splints and have the benefits. In a way, the heavier splints (rather than carbon fibre) offer me stability and the rigidity that I need.

It might not be for everyone and that’s okay. I’m not suggesting that everyone should get them. But we need to move away from the medical model and see AFO splints as a long-term option for adults. Some people might find AFO splint too uncomfortable and prefer to use a wheelchair. However, I know there aren’t many adults with cerebral palsy like me who wear AFO splints.

AFO splints aren’t just for children, they can be worn by adults with cerebral palsy as a way of improving quality of life. They can be a long-term solution to help build and maintain strength.

~ Chloe x