There has been a lot of focus on how my MS is progressing lately. My Neuro made some noises about Secondary Progressive and is switching my treatment accordingly, while my nurse has been making more referrals for me to be seen by more professionals. My latest one took just days to come through – a referral to the Re-enablement Centre to assess me for a swanky new wheelchair to suit my swanky new needs.
When I was given my first wheelchair a little over 2 years ago – pre-nasty relapse – I was over the moon and filled with optimism for my newfound independence. It didn’t take long, however, to realise the limitations of a fairly heavy self-propelled wheelchair. While it has been invaluable on days out with my family it has been close to useless when I’ve been on my own, especially when it comes to heaving it in and out of the car.
At the centre I was greeted by a friendly lady, PPE’d up to the hilt, who wheeled me into the assessment room. I’d only been in the room a matter of seconds before she jumped up to find a suitable ‘active user’ wheelchair for me to try out. When she finally brought one in we both sat and contemplated it for a few moments. It looked more compact than mine. It looked smarter than mine. But it still looked a little on the clunky side.
I transferred over with the help of the assessor, who was being extra cautious in case I should fall flat on my face. I performed a few doughnuts in the room before heading for the great outdoors, my assistant walking close behind me to avoid the ‘chair tipping over backwards. As any seasoned wheelchair user will know, wheeling outside is a world away from wheeling inside. The camber of the pavements, the hills, the slopes, the kerbs and the uneven surfaces all conspire to make self-propelling a logistical and physical nightmare. And so it was, as I heaved and pushed and grunted my way along the car park, that I realised that this wheelchair was as close to being useless as my original one.
Back in the assessment room we sat once more in silence pondering what to do next. Then, looking at me with a solemn seriousness, my assessor said, “This is going to be painful for you to hear, but what you really need is an electric wheelchair for when you’re out and about”. I looked at her, hoping that my face mask would hide my bafflement, and said, “Wouldn’t that be even harder for me to get in and out of the car?” To which she replied that I would need an adapted car so that I could either propel it up a ramp to the boot or use it as a replacement for the driver’s seat.
I don’t think I’m in any sort of denial when I say that I really, truly am not at that level of disability, and hope never to be, and I said as much. This left us with one more option – I could take the value of the ‘active user’ wheelchair on offer and put the money towards a rather more sophisticated and life-enhancing super duper wheelchair of my choosing. This is my official plan, which, I have to say, would not be possible were it not for the generosity of some incredibly supportive family and friends. As always, I am bowled over by the love.
The Wibbly Dinosaur 
Morning just read your blog
I’m now in the SPMS stage and I use an NHS wheelchair chair called a Quickie (fnaaar fnaaar) it’s not quick but I use that indoors.
For my outside chair i use a company called RGK. They are bespoke and also have a front wheel attachment which has been a game changer for us. It takes kerbs, trees stumps, stones the lot. I’m considering a power pack which isn’t cheap but it propels the wheels and you can hold hands and be side by when out in the great outdoors. Hope this helps xx
I’m certainly not ready for a van or wheelchair space in the car!
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Thanks, Julie! I’ve been directed to RGK by friends, they sound like a great company. The front wheel attachment sounds amazing, there are so many small obstacles out there! xx
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Gosh – what a lot for you to process. My impression from your previous posts is you are not at the stage of needing electric wheelchairs or adapted vans. That would need a mental adjustment too far.
From my own experience, a mobility scooter for use outside opened up a whole new world for me and meant I didn’t need help from anybody (very important for me as I hate asking for help!).
I had lots of reservations about getting one, not least the idea that they were only for old people. Now I don’t think twice and no one gives me strange looks as I whizz around town. One of the biggest benefits has been managing the dreaded fatigue – now I can use my energy to do things once I get to my destination rather than using it all up just getting there. You may have other reasons for not wanting to use one, but having experienced a life changing effects of having one I would really urge you to consider at least looking into getting one
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Thank you, Holly. I can’t quite put my finger on what it is about mobility scooter that scares me when I know full well that having one would be a game changer … but I just don’t want one! I think I need to take some time to adjust to the idea, it may be something for the future!
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And that is absolutely fair enough! The right solution for you is the one that you want, not what anyone else thinks you should have. It sounds like you’ve got great family and friends who’ll help make sure you get exactly the wheelchair you are most comfortable with. Good luck and I hope a fab new wheelchair will make getting around much easier for you x
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I didn’t want to read and not comment which I normally do, as I can see this is huge for you and I admire your positivity and humour in your writing. Wishing you all the best and look forward to hearing about the new need knees chair!
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Thank you, Claire! I always appreciate the comments, so it’s great to hear from you. I’m hoping to get a snazzy wheelchair with a splash of colour, so it’s actually quite exciting!
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