FND and mobility aids

April is Functional Neurological Disorder, FND, Awareness Month. FND is a problem with the brain and nervous system’s inability to properly send and receive messages around the body which can result in a wide range of symptoms.

One symptom of FND is altered gait and other mobility problems. This is a symptom I have. When I walk my brain struggles to communicate with my legs so my gait is all over the place and I’m very off-balance when I walk. I also get reduced sensation in my legs which also makes walking difficult.

I’m an ambulatory wheelchair user. This means that I can walk a little with my crutches but I also need to use my wheelchair to help me get around. In the UK around a third of wheelchair users are ambulatory. At home I sometimes use my crutches, but most of the time I now need my wheelchair to get around. But when I go out I always use my wheelchair as I struggle walk at all when I go out. I’m also safer in my wheelchair as I can’t fall and it’s also safer should I have a non-epileptic seizure which is also another aspect of my FND. My symptoms are also better managed when I’m sat down.

Using a mobility aid doesn’t mean you’re “giving up”. Mobility aids are here to benefit us and aid and support us. They’re not a sign of weakness or failure they’re a sign of strength and wanting to live your life to the fullest as possible.

The decision to start using a mobility aid might be something you’ve chosen yourself, or it might come from a healthcare professional. It can be a big step to start using a mobility aid as you might feel that it’s a sign that you’re now more unwell. This might be the case for some people but not for everyone. Using a mobility aid can actually improve your life. It will give you more freedom and independence and quality of life. They can also help you to better manage your symptoms like feel less fatigued, reduced pain, better management of heart rate, more stability, save energy and more as well as offer safety.

Mobility aids don’t just help us physically, they can help us emotionally too and give us more confidence. We don’t have to worry about things like falling, passing out, becoming tachycardic, being off-balance, not being safe, having no place to sit down to rest and so many more reasons.

Some people always use a mobility aid and others just use it when needed like on bad days or when going out. Others have a variety of mobility aids and use different aids on different days depending on their symptoms.

When my FND started, before I was diagnosed, so I didn’t know what was wrong with me but I was struggling with my mobility I used to carry around a fold-up walking stick and I’d use it when needed and then I used it all the time. By the time I was diagnosed my physiotherapist had then said I should start using crutches. As time went on and my mobility and overall health worsened not just my FND but my other conditions I asked my neurologist if a wheelchair would be of use to me. I wanted his option as I didn’t want to decondition my mobility. He absolutely thought that a wheelchair would benefit me and he knew how determined I was to not decondition and he said that he knew that I’d know when I would and wouldn’t need to use my wheelchair.

Wheelchair Services provided me with a wheelchair and it really did benefit me. I was able to go out more instead of struggling walking with my crutches; getting tired and then completely crashing and making myself more unwell. As the years went on and my health continued to decline I needed to use my wheelchair more often and my NHS wheelchair wasn’t meeting my needs. I now have an ultra-lightweight active wheelchair, my GTM Mustang, which I love because it meets my needs and it’s given me back my freedom and independence as well as improving my quality of life. 

Another mobility aid I have, which has to be one of the best things I’ve ever bought is my Batec Mini 2. It’s a power add-on for my wheelchair so I can easy go zooming around.

My Batec has really helped to improve my mental wellbeing. Just being able to get outside and ride around and get some fresh air or ride to the post my penpal mail or to the shop. I’m in my little happy place when I’m riding with my headphones on and saying hello to dogs out on their walk.

When I first started using a walking stick I felt nervous using it and being seen using it as someone in their early 20’s as I always associated walking sticks with older people; not someone young like me. I used to think about what people thought of me using it when I got on a bus and then went and sat on the reserved seating. I never really saw people my age using mobility aids.

That’s one positive that has come out of the chronic illness community; seeing other young people my age using mobility aids. It really helped me to not feel isolated and to realise you can need a mobility aid at any age and it helped me to accept using mobility aids. I also saw to variety of what jazzy mobility aids that were out there too, or the various ways you could decorate your mobility aid.

Jazzed up wheels and my floral crutches

One thing I’ve found over the years that has really helped me accept my mobility aids is having mobility aids that represent ‘me’. I personally could never accept long-term using the drab gray NHS walking sticks, crutches or rollators. The first walking stick I bought was floral patterned and then my first pair of crutches were silver with spots on in various shades of purple and a purple ferrules, handles and arm cuffs. My crutches now I have a custom design on which is a Cath Kidston floral print. My NHS wheelchair I jazzed up with spoke covers and pink push rim covers. I also plan on adding a bit of ‘me’ to my GTM wheelchair at some point.

I love what stylish mobility aids there are out there, especially for younger people who don’t want a drab NHS grey mobility aid, but unfortunately like most disability things stylish walking sticks, crutches, rollators and wheelchairs they often come at high cost. You can do DIY decoration on mobility aids such as on the more expensive side spoke guard covers to low cost coloured spoke covers for example, or using a can of spray paint. It’s nice to see how people have personalised their various mobility aids as you can see the expression of them as mobility aids are sort-of like an extension of ourselves and part of our bodies.