Finding the right walking aid for Ehlers-Danlos syndrome isn’t straight forward. Here’s what I’ve learnt so far.
It’s not easy to find the right walking aid for anyone but it’s especially hard when you have Ehlers-Danlos syndrome. Why you may ask? Well let me show you. Come with me on a journey through the trials and errors of finding my perfect walking aid.
The Walking Cane
Cost of mine – £15
At first I began as most do, with a walking cane. I went for a collapsible cane so I could easily stash it it my bag, black with silver threading. Sleek and cool. Practically a fashion accessory!
To this day I like to keep it on my person, just in case, but as much as I would love to use the cane more, it’s not for me.
Firstly, one cane alone isn’t good enough for me as any given day it can be that my right leg is bad, then my left leg, then both legs at once!
Secondly, my hands are really weak and prone to dislocations, so leaning on the cane too much can and will do severe damage to my fingers, wrists and shoulders. I end up trading walking with a cane for the high price of not being able to use my arms.
I tried to endure the cane but it was finally when I dislocated my right shoulder while walking (funnily enough when I had been sent to hospital for emergency blood work so I was at least in a good area) and causing nerve issues, that I knew I had to look for another solution.
Cost of the one I want – £500
Frames aren’t great for my hands. They have the same issues as walking canes for me, so in all honesty I never even contemplated them.
I needed one with wheels as I lack strength, so I tried my boyfriends grandfather’s one, which is a standard two wheeled walker/rollator. I realised quite quickly that I needed one with a seat and preferably one my boyfriend could push me in while sitting if I just ran out of energy. We needed one that was light and if I could, one that was snazzy.
So I trawled the internet and found one I loved, the Rollz motion2 rollator but it cost near £500, more than a wheelchair!!! I’d still love to get one eventually but I knew that a wheelchair was probably more suited to me and my budget at that point. So I bypassed the rollator and went straight for a wheelchair.
Self Propelled Wheelchair
Cost of mine – £120
My baby blue, as I call her. Bought from CareCo online, it’s a self propelled wheelchair. It’s a great cheap option. It also has a fresh look about it. I loved it but alas you get what you pay for.
From the moment I got in it, I felt how bad the suspension was. It was also heavy when I tried to push myself and I was constantly dislocating fingers. My boyfriend had to wheel me and it wasn’t the best at manoeuvrability. I began resenting my loss of independence in the chair. I wanted to be able to go where I wanted, when I wanted and I couldn’t with this chair. I finally came to the difficult conclusion that I was too fragile for self propelled, instead I needed it to be powered. The problem is, I live in a tiny flat with no outside storage, garage or garden, so a mobility scooter was out of the question. Plus, they are really expensive and not very powerful. So back the the internet I went to research alternative options until I found what I needed.
Cost of mine – £800
If you don’t know about these then let me explain. They come in the form of a wheel, handlebars and an electric battery in one unit. The best known is called the Firefly. You can the attach this piece to your wheelchair, turn it on and whoosh, you’re off! In some ways it’s better than a mobility scooter because it’s more versatile as you can take it on and off, it’s more streamline for public transport and if you are in your chair full time then you don’t have to transfer yourself to different chairs. However, they are around £2000 and completely out of my budget!
Luckily there are similar Non branded versions on eBay and I found one for 800 including p&p from Romania. I wrote to the seller to check it would fit my chair, which he said it would, then I saved up. A year later I had managed to save enough, so bought it and before I knew it, it had arrived! And it’s a beauty. I loved it. It attached easily to my chair and I was off.
But now comes the downside. When going over a dropped curb my whole chair tipped tilting me into the road. The chair, my Baby Blue was just too flimsy. Then when I went too fast over a pothole, my chair snapped on both sides making the chair completely unstable. I was forced to buy a new chair completely.
So I bought a chair suited for more off roading, my Red Angel. This was much more stable, better suspension and easier to manoeuvre. And when I attached my electric ‘handcycle’ it felt much better. It goes over gravel, grass and is my ‘hiking’ go-to.
But… It’s still unstable and a crack has already appeared in my new chair on the same joint as before. My boyfriend suspects he is going to have to do some strengthening welding on my original Baby Blue chair to see if he can make it fit for use with the attachment. If this works, then he’ll do the same to the Red Angel.
If you have a stronger more expensive chair I’m sure you won’t have this problem but I do recommend going for the Firefly attachment or another branded name as it is probably the safer option.
But I still love my Handcycle and with it I went off-roading in Sussex and all around Wakehurst park. However, another point specifically for people with problems with their hands or CFS/ME, is that it hurt my hands using a throttle for too long. Just having my arms outstretched for the handlebars exhausted me. Also the Handcycle was so heavy I couldn’t attach it to my chair without help. I couldn’t even get it in and out of my house. So yes I had some independence but not really. I couldn’t just pop down the shops on my own. So with deep dread I came to the conclusion that this was great for holidays but not for day to day independent living. The only choice left for me was going to be a power chair.
Cost of new wheelchair – £300
Cost of mine – £2000
I needed a powerchair but one that I could manage on my own to give me independence, plus one that would fit in my tiny flat and a car. This wasn’t something I wanted to just order on the internet, I didn’t want to get this wrong, I needed to try before I bought. So off to CareCo I went.
First I tried a cheap one that came apart into five bits. But each part was so heavy and I couldn’t even take it apart or put it together on my own with my weak hands. It was in my budget for £700 but useless if I couldn’t use it.
The CareCo rep asked what I needed and when I told her she gave me a pained smile and said she had the perfect chair for me but it came at a price. I thought what the hell and tried it. To my dismay she was exactly right. It was light, it folded, I could manage it on my own, it was even flight safe… It was also £2000!!!
I left a bit disheartened as I calculated it would take me nearly two years or more to save up for. But I was determined to do it. That was when a friend stepped in, told me stop being so proud and set up a PayPal pool so that my friends could help chip in for it. They hated that I was becoming housebound and wanted to help. So I let go of my pride and did just that.
And in a week I had the full amount! I am a very lucky girl with amazing friends and family. I bought the chair a few weeks later and it has changed my life! I can take myself for a roll whenever I want on my own. I can go to the shops or pub. It stops me getting too many dislocations and conserves my energy. I wish I had got it years ago!!! There are no downsides at all!
In conclusion, I wish I had just accepted how disabled I was in the first place and got the powerchair earlier. I still exercise and have physio but walking is destructive for me. All that I gain when I push myself to walk is pain, and a week bedridden with exhaustion. I want anyone who is reading this with similar struggles to use my story as a guide. Don’t feel guilt or shame to admit how disabled you are to yourself and others. Let others help you. Love your walking aids and feel fabulous about them and in them.
All that matters is how to improve you mobility and health.
Be happy with who you are.