5: Wheelchair foot rest

Day chairs come in a lot of different designs to suit people with different needs. 'Active user' chairs are generally the smallest and lightest of all manual wheelchairs. They're also expensive!

One of the key differences in design is the placing of your feet. Above you can see my wheelchair - where the feet stick out at the front. Below you can see a typical lightweight chair designed for an active user - the back rest is shorter, the 'handlebars' for a carer are more discreet, the feet come under the body more and the whole thing is pared down to the basics. These chairs are awesome but they are also start in the thousands of pounds instead of the hundreds.

There are a few things you can do to make a cheaper chair a bit more like these expensive ones. From the cosmetic point of view, you can change the colour of a plain silver/black chair by the application of coloured tape - I started off with a penguin design...

...then changed my mind and went for an aggressively bright orange instead!

Don't worry though, the penguins are engaged on another work-in-progress project.

Anyway, the main change I wanted to make to my chair was to move my feet to a different position which would give me better balance and would dramatically decrease the length of me + chair - I was fed up of bashing into things in shops all the time!

I had quite a long think about how this could work - whether or not I'd be able to buy an alternative foot rest that would slot into the existing spaces but hang down straight. The main problem I faced is that on my chair, the front wheels are much larger than those on chairs which are designed to have the feet lower. Therefore, any solid footrest would stop me from being able to turn.

What I've come up with is something of a prototype, and I will definitely seek to refine it, but over the last week I've found it to be a big improvement on having my legs stuck out in front of me. Here's what I've done (it's very simple and cheap!).

Step 1

Step 1 - remove existing foot rests. I guess this will only work if your foot rests are detachable...otherwise you could saw them off?! This approach might then cause problems if you want to put them back on sometimes...

Step 2

Step 2 - get some strips of velcro. I found some straps in Hobbycraft which are elasticated and have velcro fasteners. You need two; one for each side of the frame of your chair.

Step 3

Step 3 - attach velcro straps to each side of your chair. In the picture above I only looped the strap through one bar of the frame; I ended up looping it around the bottom bar as well to add a bit of extra stability (see below).

Step 4

Step 4 - once you've looped your two velcro straps, take a wide length of elastic or other fabric and tie it between the two straps. Depending on how elasticated your straps are, it needs to be quite high up so that your feet stay off the ground when you have the weight of your legs forcing them down.

Step 5

Step 5 - experiment until you find a height that you're happy with. If you have your feet very high, you should be able to avoid the front casters all the time. At this height, my legs are at a comfy angle and my feet are well clear of the floor, but the front wheels do just nudge my feet a bit if I turn sharply. Since these chairs aren't really designed for this, you will probably have to find a compromise.

Step 6

Step 6 - you are now ready to roll! Getting your feet into the strap might be a bit tricky depending on how much strength/co-ordination you have in your legs. If my legs are bad, I just lean forwards and use my hands to put my feet in the right place.

Advantages
+ This is much cheaper than buying a new chair or having a new footrest made.
+ The velcro straps mean that you can remove the foot strap if you want to.
+ Because the whole strap system is small and flexible, you can leave it on and still fold up your chair normally.
+ You can still put your other foot rests in if you'd rather be in that position for a while - and you can leave the straps in place while you do that.
+ The new position can make it easier to push and balance.
+ You make the space taken up by your chair significantly smaller, which makes manoevuring around shops/lifts/pavements etc much easier.
+ Being flexible, the strap system does mean that your feet swing around. This can be a negative (see below) but I quite like it - I find that with a fixed foot rest my joints seize up and my legs become very painful and hard to control. The gentle swing that you get from this system helps to keep joints moving and allows a more comfortable and natural movement.

To cover up the gap where the normal foot rests go, I made a 'bed knob' out of Fimo clay.

Disadvantages
- The swinging sensation described above may mean that you find it harder to brace and push. It's also not for everyone - I enjoy the sensation most of the time, but if I'm having a bad day for co-ordination it can be a bit off-putting.
- Assuming that your front wheels are relatively large, the wheels will probably nudge your feet when you turn. This isn't painful but if your tissue damages easily it's something to be aware of.
- It can be a bit tricky getting your feet into the strap because you have to lift up your knees quite high.

Overall, I've found that the new system has made me much more comfortable and confident in my chair. I know that when my legs need to be straighter I will be grateful for the old sticky-out footrests, but the rest of the time it's nice to be less of a trip hazard to everyone else!

4: Plug sockets

FIRST - There is a BIG safety disclaimer with this one. Make sure your equipment is up to scratch and if in doubt, ignore this hack. I am not an electrician or a firefighter. I am somebody who can't pull plugs out of the wall and wants to be able to. I am not responsible for any damage that you may have if you decide to use this hack, even if you follow the suggestions to the letter. It is up to you to decide if you need to do this and if you want to take the slightly enhanced fire risk. Look after your equipment and be aware and you shouldn't have problems - but if you do, it's not my fault!

So, another grip-related one. Some plugs are easier to pull out of the wall than others. The problem can be resolved by simple application of electrical tape (a roll of which will set you back a couple of pounds). However, there are downsides to this problem - there is a slightly enhanced fire risk (although this is minimal) and it may invalidate your insurance for the product in question. However, personally I think that I'd rather be able to get my plugs out of the wall than not (some manufacturers' plugs are simply impossible) and if you're not silly about it it should be perfectly safe. Just remember that plugs are not there to be decorated, and the purpose of this is purely to add practical value rather than decoration. Don't go overboard on the tape!

Plug with tape and without

I have found this to be a really useful hack but before you do anything please read the disclaimer below and if you're worried, find another way!

<<DISCLAIMER - READ ME!!!>>
The main advice with any kind of alteration to an electrical product is that if you tamper with it (e.g. by putting tape on it) you are making it work in a way for which it is not designed, so you can't complain if it malfunctions in any way. There is a chance that the plug will get hotter and may malfunction/cause a fire. Don't be ridiculous and it shouldn't be a problem. If you're worried, don't do it.

To keep it safe, do NOT wrap the entire plug in tape. The less tape you use, the better. Tape wrapped round the plug makes it heat up, which can cause fires. The only bit of tape in this hack which is in contact with the plug for any considerable distance is a little bit on the back, which should be a single layer.

Do NOT get tape on the pins.

Do NOT put on so much tape that it is too thick to allow the plug to sit flush to the wall/socket.

Do NOT use this technique on any plug that was not made by the manufacturers of the electrical object with which it is associated (i.e. if it's a charger, only use the plug that came with your device). The reason for this is that many plugs sold unbranded are not as high quality (read this). I have had one plug which I bought cheaply from the internet which had no tape on but which burnt out in normal use - not causing a fire, but only because I noticed the smell in time to turn off the switch then prise it out of the wall. The plug itself was badly scorched on the outside and destroyed inside. Just don't risk it!

DO check the plug regularly (including during use - test how hot it feels) and if it's over-heating or showing signs of wear and tear take the tape off and replace it!

DO remember that if you put tape on the plug that may invalidate insurance of the plug.
<<END OF DISCLAIMER>>

Given the warnings above, this is only worth doing if you have a plug which you need to move on a regular basis and that you really cannot get out of a socket by yourself. If you're worried, you can take the plug apart and put a new casing on it (though this would also remove any obligation from the manufacturers).

The only plug I have used tape on is for my laptop charger - if I go away (e.g. on a conference) I need to be able to take my laptop and charger with me, and it doesn't look good if I'm asking other people to take the plug out of the wall for me. All my other plugs are OK so I have left them as they are.

If you're worried about fire risk, please read this report, and be reassured that only excessive insulation of the plug is likely to cause a fire with a properly-working plug - so don't be excessive with the tape!


Right...here's what to do.

Take the offending plug and measure out a strip of electrical tape about 20cm/8 inches long. If it's too wide to fit cleanly between the pins, cut it down to size, then lay it across the plug as shown below (the plug doesn't have to be exactly halfway along). Electrical tape is pretty strong so you can make it thinner if you want to make it safer in terms of plug overheating.

Take the two ends and curl them up behind the plug to make a strap which you can comfortably fit two or three fingers into.

Snip off/fold over any loose bits of tape.

Measure the length of the loop, using some string or another piece of tape cut to size (I used the off-cut from trimming down the width of my long piece).

 

Cut another piece of tape - this is for the inside of your loop, so that you don't have sticky tape on the inside.


You can either cut a piece which is just shorter than the outside of the loop (so, in the example above, just under 7cm) or one which is about two centimetres longer (i.e. 9cm). If you go for the longer length, you can fold the end down to create a more secure base on the plug. However, this is really fiddly and it took me a long time to make my hands co-operate enough to get it stuck down securely!

If you cut down your first long strip to make it narrow enough to pass through the pins, you can now fold the sides of this inside-loop strip over so that there are no sticky edges anywhere.

Your plug is now ready to go! 

If you want, you can put another loop of tape around the whole thing to make it more secure. However, my belief is that the less tape there is, the better, as minimising the amount of tape will minimise the possibility of the plug over-heating.

3: Cycling a pedal (regular) bike

I'm aware this won't be much use for some of you out there who can't use your legs at all. Sorry! I'll do something more general soon.

For those of you with disabilities that do allow you to cycle from time to time, a regular bike may need some adaptation. Here are some of my experiences recently which have helped me to stay safe and enjoy the odd gentle cycle ride. This post is about small, cheap changes that can be made. It is possible to get all sorts of bigger changes (stabilisers, hand bikes, etc.) but a post on that will have to wait for another time.

This post is designed to suggest answers to just two problems - how to stop safely if only one hand works, and how to keep feet on the pedals.

SAFETY FIRST

The first thing is simple - wear the right kit. This means a helmet, hi viz and, if visibility is bad and ALWAYS at night, lights. You need a white light on the front and a red light on the back, and they need to be bright enough for a car driver to see you from quite a way away. If you could possibly bear to leave them on constant mode instead of flashing then people who get seizures will thank you, and, contrary to popular belief, it will be MUCH easier for drivers to see you, judge whereabouts you are, and give you plenty of space.

Only cycle on the roads if you are confident that you know what you're doing and that you are capable of staying safe and of keeping other road users safe. Only cycle at night time if you have lights, hi viz AND you are confident cycling at night. I am not confident to cycle at night time at the moment because the lights from cars and other bikes sometimes set off seizures. I don't want to be lying in the middle of the road at any time of day, but certainly not at night time. Just be sensible.

Helmets HAVE to fit or they won't work properly. They are adjustable and you should check that it fits snugly every time you put it on. Make sure it isn't tilted backwards or forwards on your head.

For more info (including the source of this image), click here.

You also, of course, need a bike which fits you. I would also recommend the 'lady's style' (or unisex) even if you're a bloke - this features a cross bar which is dropped down so that riders can cycle in skirts, but the main advantage is that you can get your legs across it far more easily than with a man's style bike. This is helpful if you can't swing your legs much (e.g. if your hips are stiff or you just have poor control of your leg muscles). Make sure you have the right size - when sitting on the seat, your toes should touch the ground. If you're a bit wobbly or a bit nervous, it can help to be slightly lower so that you can save yourself with your feet if necessary. However, the higher up you are (within reason), the easier it will be to get moving and to balance.

Lady's bike frame style

Wherever you cycle, you have a responsibility not only for your own safety but also for the safety of people around you (especially pedestrians). As a pedestrian, getting hit by a bike can cause a lot of damage, so don't go out if you aren't safe.

The tricks

Handlebars - to operate the handlebars you only really need one hand, assuming that your balance is quite good. You don't need any special grip on the handlebars, so grip problems shouldn't affect steering. You may find that the extent to which you can move your wrists (or hold them in one position) will influence the style of handlebars you prefer. It might be best to start with a basic mountain bike style and experiment with dropped racing handlebars or a more traditional style, where the handlebars come closer towards the body. DO NOT tape your hands to the handlebars - doing so could be very dangerous if you fell off. You sometimes see people using grips to help them cycle (strapping which holds their hand to the handlebars). If you are confident that you can get your hands away from the bike quickly, that's OK, but if you aren't and you could be in a dangerous position (e.g. lying in the middle of a road) then you probably won't want your hands to be stuck to a bike.

This image (available here) demonstrates some of the setup options.

Brakes - these are usually operated by the hand, and might be the first thing to cause trouble if you have grip problems. Strictly speaking, you can stop the bike with only one hand as one hand will be connected to the front brakes and one to the rear brakes. Ideally, you would use the rear brakes most of the time rather than relying on the front brakes - if used suddenly without also using the rear brakes, they can result in a rather dramatic flying over the handlebars incident, as my brother once discovered! Assuming that you do not wish to add to any disabilities you already have, I would therefore recommend that you set up your better hand with the back brakes (a good bike repair shop can do this for you if you don't fancy getting oil all over yourself).

Get your back brakes connected to your stronger hand and you will be much safer.

If your bike is the right size for you (or possible a little small, to be on the safe side) you can always put your feet down, but if you're travelling above a certain speed this is also likely to result in injury unless you use the brakes first. If your bike has gears and you are able to use them, switching suddenly to a higher gear will slow you down as well, but it might well cause some chain issues so I wouldn't recommend it as a regular way of braking!

Pedals - one of the problems I've had with cycling is that my left foot isn't really under my control all the time, so it can slip off the pedal very easily. I also find it quite hard to put much pressure down through that leg, meaning that I cycle in quite a wonky way (using my right leg much more) which exacerbates the foot slipping problem. Here is the solution:

This foot strap (helped with staying in place with a bit of matching electrical tape) came in a pack of two from Amazon for £4.99. Here it's at a reasonably loose setting so that I could get my foot in and out easily (early experiments did result in a rather silly fall which I'd rather any readers did not replicate!). The photo below shows how tight I needed it to be to have the desired effect (keeping my foot in place, helping me to push down and pull up on the pedal) whilst also being safe.

My shoes have cherries on. This is not an essential feature of bike safety.

These straps are easy to use. They have two thin straps which go underneath the pedal (or through it, if possible). The two thin straps match up with the first broad strap, before the second layer broad strap goes over the top to hold them in place. All the straps are held in with velcro which is nice and strong and holds them firmly.

That's it for now - your good hand should now be doing most of the breaking and your naughty feet should now be kept safely on the pedals (but with space to escape).

2: The cheap way around grip problems.

Wheelchairs are great. They get me around when my legs give up and give me a seat when I'm tired. The only problem is that my left arm isn't great, nor is the grip in my left hand. This means that it can be really hard for me to push myself. Here are some of the ways around that problem...

Not very forgiving if you have poor grip.

Leather gloves
I've tried a variety of wheelchair gloves and grippy gloves (e.g. those designed for horse riding). Making wheelchair or cycling gloves damp before you use them can help a bit with gripping, but the only gloves that have really helped are leather gloves with a decent bit of padding/lining. This is because the glove basically sticks to the push rim of my chair, meaning that as long as there is strength in my arm I can still push myself a bit even if I can't actually grasp the push rim. The only problem with this is that gloves can wear through quickly and they aren't especially cheap. They also get very hot in summer!

Grippy wheels
You can buy wheels that have special grippy push rims built in, such as those made by Surge. These are excellent, but expensive (c.£200 for a set). They are also quite difficult to use if you have limited hand control, as the grippy bit is only found on the upper edge of the rim.


Here is my solution!

£4.29 for three rolls, reduced from £4.99.

Yep, it's tennis grip. Even without the discount, two packs comes to just under £10, which will easily do a single wheel. 

Loop the grip quite tightly around the push rim, making sure to overlap the grip on each turn. I found that each roll of grip covered one fifth of the wheel. You can then use the sticky ties provided to make sure the grip is really held in place at the ends, but you only really need to do this at the final end, as each other end will be held in place by the next roll. This part of the job can take a long time if you struggle to control your hands. As a guide, I think it took me through two episodes of the Great British Sewing Bee - but it was worth it...

Here's the finished result!

Day-glo colour scheme optional.

With the tennis grip on my wheel, I can now slam my hand at the push rim and it gets 'stuck' to the wheel without me actually having to hold it. This means that I can push myself along much more easily. It's not a particularly subtle way of moving myself along, but it works. It's also better in the rain.

It's not a permanent fix - it will eventually wear away or just get a bit tatty. However, it's cheap enough that I don't mind replacing it every now and then. This also gives me the option to vary my colour scheme with the seasons! Pink is not my usual go-to colour choice (I spend most of my time with horses or on rivers, so I'm more of a green person I suppose) but I was fed up of blue and black and wanted to stand out. The colour does, of course, have the additional benefit of making you much more visible to motorists, cyclists, and anyone else who might otherwise ignore you. It's suprisingly helpful for getting noticed in shops too!

And if you're wondering about the colourful reflectors; well...they make me more visible too, but really they're just for fun, and were only £2 as well (came from the children's cycling section of a local sports shop). Cheap and effective customisation!

1: When eyes meet screens

This first post has been shamelessly copied from my other blog, Bendy Rower. The Bendy Rower blog charts my progress/lack of progress as an athlete learning to cope with Ehlers-Danlos Syndrome and getting involved in as much para sport as possible. This blog is inspired by some of the ways that I've learned to deal with mobility problems. It is by no means intended to be appropriate for all disabled people, or even for all people with EDS. With any luck, however, parts of it will be useful for some people, and hopefully I can save you some money and stress by making life with a disability a bit easier and even a bit more fun!

If you have something which helps you to deal with your illness which you think would be useful to other readers, or if you would like to suggest a problem to see if I can come up with a solution, please leave a comment!

In the meantime, happy reading of Post Number One - Where eyes meet screens.

Part One: How to use a computer when your head and eyes want to give up.

This will be quite a short post becase even though it's the middle of the day and ostensibly the best time to be using a computer, I still need to write it in several stages without really looking at the screen, and that takes time...

Eye problems associated with EDS are common - 80% of the eye is made up of collagen, that magical protein that EDS-ers find so hard to produce properly. All sorts of problems can occur. The ones that most affect me (so far!) are myopia, glaucoma, iritis, dry eyes, photophobia, lens subluxation and astigmatism. These problems combine to make using a laptop or even a mobile phone quite difficult. Here are some ways round it that I've found helpful.

F.lux
The f.lux software is probably the single greatest thing I have ever downloaded onto my computer. It is designed to help people sleep better: using a computer late at night floods your brain with blue light from the screen which prevents your brain from realising that it is night time. You tell f.lux where you live, and as dusk draws on it automatically dims your screen and makes it appear more yellow.

F.lux settings

This doesn't just help you to switch your brain off at night time - it also helps me to use the computer a bit longer without the glare and the sharply contrasting colours many websites use affecting my eyes and my brain. I can turn up the 'yellowness' of the screen during the day so that if I'm struggling more than usual I can have a gentler screen to look at. Photophobia, which is quite common in EDS, can be managed if not eliminated by this software. I also have a similar version for my Android phone called 'Twilight', which works in exactly the same way and helps me to be able to look at the screen for long enough to be able to check the time without causing five minutes of blindness and pain!

Twilight settings

Special fonts
There are various fonts that have been developed for people with disabilities that make it easier for them to read large quantities of text. Many of these are intended primarily for people with dyslexia, but although I don't suffer from dyslexia I have found them really useful. A quick internet search will help you to find a few different types. You can download the software for a font (often for free) and install that into your web browser, or you can download a specific browser which automatically puts all websites into the special font. One that I used on my old phone (and iPhone) was a browser called 'OpenWeb'. The image below gives you an idea of what the fonts often look like. They make it much easier to read large amounts of text without squinting at a screen.

OpenWeb browser on an iPhone

Computer settings
Play around with your settings - make the mouse bigger and black with a white surround (shows up better on pale backgrounds, i.e. most websites and documents); sacrifice a bit of sharper resolution to make icons and text boxes bigger; adjust the colour settings and change the background of windows (e.g. My Computer/My Documents and equivalents) so that they aren't white and glaring; use reading software and reversal of colours (e.g. pale text on dark background); and search online for more ways to make your computer more visible to you. There's a very handy guide to making these changes written by the BBC here.

From the BBC website

Being sensible
That advice about taking regular breaks away from your computer, looking away and focussing on something in the distance, and generally limiting the amount of time you spend using your computer is all the more vital if you have trouble with your eyes. You can set alarms on your phone or on a website if you think you won't remember to take a break. There are some ideas of apps you can use here, but a regular alarm clock will do just as well. Have a good amount of time looking out of a window into the distance, then at each shoulder (which can only get so far away from your eyes, so force you to look at something close), then let your eyes just drift in and out of focus. Don't forget to blink properly too. The two most important things are to take plenty of breaks and to be realistic in how much time you can spend per day looking at a screen. In the course of writing this article I have taken about 20 breaks so far, and have also just about hit my limit of how much computer time I can cope with in a day - and that's OK!

I'm just resting my eyes...honest...

And, speaking of rest, that's all my eyes can deal with for now. Cheerio!