Mobility bike for MS, Abbie Cragg’s review

Abbie Cragg describes the trials and tribulations of buying a mobility bike to help her get out and about.

Anyone who’s lived with multiple sclerosis (MS) for a while will know that there are moments in your post-diagnosis life that stand out as being emotionally and mentally significant, and although not for reasons you’d ever choose, they have to happen if you’re going to move forwards.

I was diagnosed with in March 2016 having recently turned 35 and after 10 or more years of dismissed symptoms (I’ve managed to bury the anger now… largely, I think). I left the appointment, had a short, sharp cry in the hospital toilets, and then called my mum to break the news. “It is what it is, it doesn’t change anything,” I nonchalantly told her. That response was genuinely how I felt at the time and for a long time after that, to be honest. Probably helped by being pre-occupied for the first year with MS nurse appointments, physio sessions, physio classes and appointments with a neuropsychologist, I felt I was handling my diagnosis pretty well. And then the reality began to sink in. My diagnosis did change everything. It was already changing everything. This was my first ‘moment’.

Cycle of life

Following this, was the moment I accepted that I needed a walking stick to stop me worrying that people thought I was drunk, and then again when I realised that I did actually need it for its intended purpose. The moment I accepted that I could no longer take on the workload I used to if I was going to give my health a fighting chance of at least staying stable. The moment I accepted that I was going to have to get a blue badge if I wanted to have anything resembling a life outside the house. The moment I accepted that I needed to switch to an automatic if I wanted to drive without fear of what my left foot may (or may not) do. And, the latest for me, the moment in October last year that I accepted, after three years of attempted persuasion from my partner, that I would benefit from investing in a mobility aid called an Alinker.

As with all my prior ‘moments’, this one had needed to occur in my own time. It came with the same feelings of deep sadness that I was once again having to admit defeat. Once again having to say goodbye to another part of me. It did, however, also come with the same acknowledgment that this moment needed to happen if I was going to move forwards with this wretched disease… and quite literally, in this case.

Wheels in motion

So, what is an Alinker, I hear you ask? Well, the company describe it as ‘a non-motorised walking-bike without pedals.’ It has two wheels at the front and one at the back, which was definitely the selling point for me. I’d hired a trike at a well-known woodland holiday park the year before thinking it would give me the freedom of cycling that I loved but was no longer able to do due to balance issues.

My word, I was wrong. It had the more conventional three-wheeler set-up – one wheel at the front and two at the back, and just the mere act of sitting on it and only seeing one wheel ahead of me, filled me with such intense anxiety that I couldn’t even lift my feet off the floor to put them on the pedals. My go-to mobility method therefore had to remain – linking someone on my left, my walking stick on my right. And so one of my hopes for the Alinker (or ‘Ab-linker’ as I refer to mine, just to give it a more personal feel) was that I could largely replace my reliance on linking when out and about. I desperately wanted some long-lost independence back.

My partner is my absolute rock. Since my diagnosis she has been supportive but not smothering – the perfect mix for my needs. But I have one criticism. Her linking skills are pathetic, to say the least. I’m barely provided with a kink, never mind a link. If she was part of the Alinker brand she would definitely be in their budget range, with wobbly wheels and no padding on the seat. Their ‘Zlinker’, perhaps.

Pedal to the pub

I also hoped my Ab-linker would allow me to not just go on ‘a walk’ but actually enjoy ‘a walk’. In a park, around a lake, anywhere that involved fresh air and natural light – two things I knew I didn’t get enough of. Such a simple desire but one that’s felt like a pipe dream for a long time given how gruelling I now find walking. Now, you may wonder if this next one is a joke. It’s not. I hoped I’d be able to use my Ab-linker to safely get me to and from my local pub. It’s only about a quarter of a mile down the road, but that quarter of a mile, after a pint or three, can go one of two ways.

Occasionally, to my delight, my muscles are lovely and relaxed and I’m able to speed (for me) home. More often, though, it is the longest, most taxing walk of my life, not helped by an almost guaranteed urge for the loo, despite going just before leaving the pub. So why do I continue to take the gamble? Because I live in hope that the former scenario will be the case. And I love beer.

My final hope was that my Ab-linker would help build up some strength in my legs, which have admittedly been sparrow-like since birth but now have the loss of muscle mass to go with them. Which leads me to the first challenge that my Ab-linker presented, which was taking delivery of it. It’s really heavy.

Getting started

The Alinker folds up nicely and with ease to neatly fit in a boot, but getting it into a boot is not a job that someone who needs an Alinker is going to manage without help! I didn’t have the confidence to take it out on my own around the neighbourhood, and so for that reason my Ab-linker was limited to just being played with in the house for the first week or so.

To my surprise, it felt incredibly lightweight and nifty to manoeuvre, with an unexpected ‘sporty’ feel as well as look. Crikey, I’m really good at this, I thought, as I whizzed around with relative ease. But the following weeks presented further challenges to my desired venture (aside from miserable Manchester weather) that admittedly just hadn’t crossed my mind before taking the plunge and investing in my Ab-linker. Where am I actually going to use this bloomin’ thing?

As soon as you set foot off my driveway you are met with a pavement that is a massive trip hazard for someone like me, followed by a network of pavements that are equally uneven and potentially dangerous. I was well aware of this fact as I swear at them every time I have to use them… but I just didn’t think. My bad.

Difficult logistics

If removing the need for the pavements by using the car, parked on what is now a nice and Abbie-friendly new driveway, where are we actually going to go? I need somewhere that is not too busy, not too bumpy, not too muddy, is largely flat, has suitable parking, has toilets, has a bench part way round (not a deal breaker, more an ideal), isn’t too far away – the consideration list is extensive.

On realising this I can’t deny that I felt beyond disheartened, and not because I had parted with just under £2,000 for my Ab-linker (£1,990 including delivery, to be exact). It was the emotion that I had invested in coming to accept that I needed one in the first place and then the subsequent excitement I felt when I started to think just how big a lifeline it could actually throw me. I felt well and truly deflated. I’m in no doubt that this feeling will have played a part in why I have so far only managed one trip out on it. That experience began with quite a bit of frustration as I struggled with navigating even the slightest dip or tilt in surface (check out the picture for proof of concentration required).

Picking up pace

Then, out of nowhere, I suddenly found my flow and was away… with speed! I don’t know if I was using it as intended at this point but I don’t care; I felt free… elated… almost child-like. And for that reason I am willing to give it another go as soon as I can muster up more motivation and positivity (I’m getting there). Obviously, I’m also hopeful that spring will bring about some much-needed good, or at least dry and calm, weather. I find my mobility issues frustrating enough as it is, so getting to grips with my Ab-linker is going to have to be at my own pace, when the weather suits, and when I physically/mentally feel on good form.

I do have many other symptoms bar mobility issues as a result of my MS. In fact, I think I have them all to varying degrees (though I’ve never had optic neuritis, interestingly). However, the mobility-related ones are what I currently find most frustrating. Probably because they can be so debilitating and do seem to have got noticeably worse over the last couple of years, and definitely because they’re the ones I find hardest to control. I used to be a perfectionist but have learnt over several painful years that such a trait is far from congruent with MS; or mobility issues, more specifically. I am, however, going to hold on to one trait that must be so deep-rooted in me that I don’t think it’s going to be one I can shake off, and that’s that I’m not very good at doing things I’m not very good at. I get it from my dad, I think. So, although I am determined to persevere with my Ab-linker in the hope of forming a much stronger relationship with it, I cannot, and will not rush the relationship. Fingers crossed, I will be able to report back with a more positive review in a few months’ time. Until then, I will be continuing to focus on learning sign language, because so far, I’m proving to be quite good at that… thank chuff.