Writing a blog about this subject has become a bit of a no-brainer. We’ve received quite a few messages asking about how, and when Dan decided to start using a wheelchair. When you’re diagnosed with a degenerative condition, the thought of eventually becoming a wheelchair user is probably one of the scariest and most overwhelming hurdles. This is something that Dan’s had to tackle because of the rare, neurological condition he has- Friedreich’s Ataxia (FA). Becoming disabled/ developing a disability is not easy… So, hopefully we can help others who might be facing the same thing. To find out about FA, click here.
A life-changing diagnosis
Until his late teens, Dan was a ‘normal, able-bodied’ young lad, who’d never even heard of FA. Other than having Type 1 Diabetes, he was healthy, and was completely unaware that he had a condition that’d soon start to change his life as he knew it.
You hear people say that ‘you don’t realise what you’ve got until it’s gone’. I’m not really a fan of that phrase, but I do think it serves a purpose when talking about life with a degenerative condition. When I describe Dan’s childhood, it might make some of you feel a bit nostalgic… He was carefree and loved skateboarding, climbing trees and building dens in the park. He played football with his mates, and was active and busy. When he hit his teens, he started going to house-parties, meeting girls and going to gigs. But, in his later teens, things started to change.
If you told most healthy, lively teenagers that they’d be using a wheelchair within the next ten years, they wouldn’t believe you. They wouldn’t even be able to imagine it. They’d probably find it an unrelatable, alien thought, that was so unlikely to happen that it didn’t warrant any further attention or consideration. But for Dan, it was a reality. After some strange symptoms began developing, Dan had some tests and was diagnosed with Friedreich’s Ataxia at nineteen. Within an average of ten years from when symptoms begin, most people with FA will probably need to use a wheelchair.
Making the huge change to start using a wheelchair is one that people with FA often, understandably, struggle with. The question ‘When will I need to start using a wheelchair?’ is often one of the first questions someone has when diagnosed with a degenerative condition. Unfortunately, there’s no straight-forward, one-size-fits-all answer.
The decision triggers a tidal wave of emotions, thoughts and considerations. Having been through this, Dan can answer some of the common questions that people might have about becoming a wheelchair user:
How long after your diagnosis did you start using mobility aids?
I started using crutches and sticks within a couple of years of my diagnosis as my balance became worse and I became less steady on my feet. I found them really difficult though; because of the coordination problems that come with FA, I just found that they complicated things. They gave me something else to have to concentrate on moving and coordinating. For me, they were more of a hindrance than anything.
I started using a frame/ stroller/ rollator when I was almost 24. I only used it around the house, though. Negotiating any uneven ground and things out and about wasn’t easy with it. If I’m honest, I was probably too embarrassed to use it in public too. Now though, I do really need it at home if I’m not in my wheelchair.
When did you start using the wheelchair?
I started using a wheelchair about 5 years after my diagnosis, when I was 24. At first, I only planned to use it if I was going to be out for a long time, or I knew I was going somewhere with tricky or longer bits to walk around. But, I soon started using it whenever I went out, because it was so much safer. At first, I had an NHS wheelchair, which despite being grateful for, I really didn’t like. I saved up and bought my own wheelchair (custom made to my measurements/ specifications) after not very long. This is the wheelchair I still use now; although today, it has a lot more scuffs and scratches on it, which tell tales of previous adventures and mishaps!
What were your initial thoughts & feelings about having to use a wheelchair?
Well, they weren’t good thoughts- I dreaded it. But, I knew I had to do it because I was falling over a lot, and it was becoming too dangerous for me to walk. At over 6 feet tall, I have a long way to fall! I was becoming too anxious to leave the house in case I fell over and embarrassed myself. The wheelchair was becoming the only option.
At first, I felt like I was losing my independence. I felt embarrassed, angry, upset, scared, weak… You name the negative feeling- I felt it. I worried that I was giving up; should I be trying harder to stay on my feet? It really brought home the reality of my condition, too. I felt like it was going to change everything. I was anxious that people would view me differently, and that I’d become isolated and excluded. On top of all that, I felt like a burden to people (regardless of whether I was in a wheelchair or not, actually).
I was in a really dark place because of the degeneration of my condition. In the end, I had to get some help. I went to the doctors and told them how I was feeling, and that I’d had thoughts of self-harm and suicide. My GP sent me for counselling and CBT (cognitive behavioural therapy), and that was when things started to improve for me.
When and how did you start to accept the wheelchair?
I gradually started to see the wheelchair as a powerful tool that would allow me to get back to being out and about and getting on with my life. I didn’t have to worry about falling over and embarrassing myself any more. Far from making me less independent, my wheelchair was actually giving me most of my independence back! It made things quicker and safer.
Before the wheelchair, I’d become really awkward and anxious about being out. People stared at me a lot, and I knew they were wondering why I looked drunk in the middle of the day. And falling over in public was HORRIBLE. As soon as I was in the wheelchair, it was obvious- I had a disability, and that was that. People almost seemed more accepting of a wheelchair than any other mobility aids I’d used. And, I no longer felt that I had to explain myself.
Were you worried your condition would worsen quicker when you started using a wheelchair? What do you do to keep as fit and healthy as you can?
The thought did cross my mind, but I knew I’d continue trying to slow down the disease progression as much as possible anyway. Plus, self-propelling a manual wheelchair is a bit of a workout in itself! It definitely requires a decent amount of upper body strength.
I do a pretty good, intense physio workout (strength, stretching and balance exercises) a few times a week. I should probably do it every day, but like a lot of people, I simply can’t be arsed to workout sometimes (especially after work)! My wheelchair has given me a better quality of life, so I try not to think too much about the future and the progression of the ataxia. Without sounding cliché, I try to live for now. They do say ‘if you don’t use it, you’ll lose it’ though; that’s why I push myself and try not to allow my wheelchair to make me lazy.
It’s really important to stand up as much as possible if you can. There’s been a lot in the news recently about how it’s beneficial for your health to stand up (which is why standing desks/ high desks are starting to appear in offices etc now). Standing upright can improve circulation, cardiovascular health, and strength amongst other things. This is why when I’m at home, I park my wheelchair up, and use my rollator to walk around. For as long as I can, I’ll carry on without the wheelchair when I’m at home.
Top Tips for starting to use a wheelchair:
- Be patient with yourself- it’s a massive change to make. It can take some time to come to terms with and get used to.
- Remember: you’re NOT admitting defeat by starting to use a wheelchair. It doesn’t mean that you are weak (ok, maybe your muscles aren’t the strongest… but we’re talking about mental strength now!). Don’t label yourself with negative words such as ‘quitter’.
- You have nothing to prove to anyone. Put yourself first and try to be open-minded. The term ‘wheelchair-bound’ gives a totally false impression of life as a wheelchair user. Most people find their wheelchair freeing and liberating, giving them ‘their legs back’.
- The biggest thing to remember is that deciding to use a wheelchair (because of a degenerative condition) is not an immediate and irreversible decision. It’s often a gradual process, and you can use the wheelchair WHENEVER and WHEREVER you want to. You don’t have to go from not using one at all, to using one full-time. Experiment and allow yourself time to learn and adjust.
- Remember that you’re still you. The wheelchair doesn’t have to stop you from expressing yourself, from having your interests, or from doing new and exciting things.
- This is easier said than done- but try to accept help when you need it. Sometimes you just have to swallow your pride. At first, it can make you feel useless, but your physical condition is not your fault and everyone needs help with some things.
- Finally, it can be really frustrating when you inevitably encounter some accessibility issues. There’s a great app by AccessAble which aims to take the uncertainty and anxiety out of going out. The app has super-detailed accessibility guides for tens-of-thousands of venues across the UK and Ireland on it. On the app (and the AccessAble website) there are shops, pubs, restaurants, cinemas, theatres, railway stations, hotels, colleges, universities, hospitals and more. This can be a really useful tool and give you the confidence and knowledge to explore more and not be held back by your wheelchair.
It’s true that FA is crap. Slowly losing the physical abilities that you took for granted can be crushing at times, but once Dan came to terms with his diagnosis, it weirdly had a positive impact on his life. He has a refreshed zest for life. He wants to enjoy everything he can, and experience as much as possible, whilst he can. Because of this, he’s done a lot more than many ‘able-bodied’ people have. We’d both urge people to just give things a go- not everything you try will be a success, but that’s ok. And when you do manage to do something you didn’t think you could, it’s an amazing feeling!
Being with Dan has totally changed my outlook on life. After having my own illnesses and then suffering with PTSD, I also felt a huge urge to regain the years of my life that I felt I’d lost. Together, we have SO much fun, yet in the past we’ve both been in a really bad place, and at points, have felt suicidal. We want people who are struggling to know that things can get better. You may even end up falling ‘head over wheels’ in love!
To find more support for anyone affected by ataxia, visithttps://www.ataxia.org.uk/
Note: Other more common conditions that are likely to lead to someone needing a wheelchair include:
Motor Neurone Disease (MND), Muscular Dystrophy, Multiple Sclerosis (MS), Spinal Muscular Atrophy (SMA), Parkinson’s Disease and Huntington’s Disease. Another disease which is similar to FA, is Spinocerebellar Ataxia (SCA).