Learning to self-propel

I've come to the conclusion that this is somewhat like driving or riding a bike. Some people are naturally co-ordinated, whereas others have to really practise. I was recently asked about technique, which was quite a difficult question to answer because I've never really thought about my technique until asked.

Now I've had time to reflect, the first thing that is important, is to sit as comfortably as a potentially uncomfortable body will allow. Even off-the-shelf wheelchairs often have velcro straps under the seat and back padding, that can be adjusted to give support where it is needed the most. My weakest area is my lumbar, so when Tom delivered my chair, he tightened the back straps at lumbar level so it gave me support there. I was just sitting there while he pulled and yanked on the straps. It was a bit like having a corset fitted.

Another thing that is different on different wheelchairs is how far back or forward the big wheels are. The further forward they are, the easier it will be to manoeuvre but that comes with the risk of accidentally tipping over backwards, as the centre of gravity is higher up. If you're in a new or unfamiliar chair, don't set off with too much gusto or you might just do the scariest wheelie ever and land up flat on your back.

Outdoors is a great place to be but it's not designed for learning about your wheelchair and getting started. My advice - find an indoor shopping centre or big supermarket (preferably off-peak). The floor will be flat and smooth in every direction (unless the builder was drunk, which happens) and you'll be able to propel with minimal effort, leaving you free to get a feel for steering.

Sit back in your chair and dangle your arms down over the wheels. Then reach for the push rims... imagine your wheel is like a clock face... grab at 12 o' clock. Push both hands forward to about 2 o' clock and if you can, do a sort of flick as you let go. On a smooth surface, that should get you moving in a straight(ish) line.

Try doing the same, but backwards. Grab at 2 and pull back to 12 with a flick but just check there's nobody behind you first. Shouting 'beep... beep... beep' in the manner of a reversing lorry can help, if you're not able to twist around.

Finally, try combining the two. Push forward with one hand and back with the other. What happens? Hopefully you turned around. Play with this a bit and you should get the idea of turning. It's a bit like steering a car. You have little bends that you can do one-handed (of course, as a driver, you wouldn't actually do it one-handed). Then you have tight corners that need more concentrated technique.

After you've had a play around going around an indoor shopping centre, you may find that your hands are a bit sore. It depends whether you use mild green fairy liquid (I believe). I do, and so I have delicate, soft skin. Propelling does take it's toll on such hands, so I have a range of gloves to help me out. Cycling gloves are really great. Leather is good or some other material that enhances grip. Padded palms, e.g. gel, are fantastic! It's worth having fingerless and full fingers and some with thinsulate lining, so that all weather/temperatures are covered.

Built to spec

I know there will be those that consider this an unnecessary luxury but even as a part-timer, I spend quite a bit of time sitting in my wheelchair, especially at work. Not only does it help me get around but it gives me a guaranteed seat and much more comfort than wooden or plastic chairs. I want to be able to stay fit enough and sufficiently pain-free that I can continue working for many years to come, so investing in the best chair I could afford, to me, seems worthwhile.

Ottobock Ventus

My old chair was a standard off-the-shelf type, whereas my new one has been made specifically for me. A nice chap called Tom came to my house and measured me in every conceivable direction and then the frame of this chair was built to measure. This required a great deal of patience! It can take 5 or 6 weeks from ordering to receiving a spec-built wheelchair... but it is well worth the wait. There are several good makes: Ottobock, GTM, Quickie... I went for an Ottobock Ventus because it seemed to offer best value for money and was comfortable and good looking.

So, let's see some pictures. It's a nice cool sunny afternoon, so I went out in the garden and took some photos specially for this blog.

The Frame

White is my favourite colour because it reminds me of snow. That's why I chose a white frame. Plus I think it gives it a clean, streamlined look. It's a rigid frame, which means that it doesn't fold in half and has a fixed footplate. The choice of footplate will become clear later on. Without the wheels on, the frame weighs 8kg. It's made of aluminium so that it's as light as possible. Well, you can get carbon fibre ones that are even lighter but they were ridiculously expensive!

In the picture above, you can see a wire going along the base. If you pull that, the back folds down and clicks into position for putting it in the car. You'll also notice that in this picture I have no push handles. I wanted removable ones so that I can choose when to be pushed and when I want to be completely independent.

Push Handles

The push handles are dead easy to slot in and they are adjustable for height and can be folded in.

Armrests

The armrests are also adjustable. They can be raised and lowered or folded back out of the way. Really though, this is only useful when just sitting. When propelling, they get in the way a bit unless they're in the lowest position.

Brakes

I really wanted scissor lock brakes but made a mistake when ordering. At some point, I may upgrade but for now, they do the job well enough. I'm a bit naughty and don't use them as often as I should. The golden rule is to always have brakes on when getting in or out but I think of it more as a guideline than a rule.

Wheels and Castors

I've got 24" wheels with Marathon Plus tyres. My old chair had solid tyres which don't give much when going over lumps and bumps. These are better - more like bike wheels. The tyres are kevlar lined (so my youngest son calls this my bullet-proof chair) and in theory, they are almost puncture-proof. I'm not planning on testing this though.

The front castors are 5" and light up when they go round. It was difficult to get a photo of this. They flash red, white and blue. Okay, I admit, it's gimmicky but it does attract a bit of 'cool factor' attention and it helps me to be seen at night. Wheelchairs don't have lights, remember!

Freewheel

The finishing touch is called a freewheel. This connects to the footplate (hence the choice of footplate) and raises the front castors off the ground. Then, because it's a big wheel, you can easily go off-road. As anyone who uses a wheelchair will testify, uneven surfaces cause big problems. Snow, mud, grass, sand... all these things are a real pain in the bum (literally). The front castors tend to jam in and then you either stop dead or tip forward and potentially fall out. This freewheel means that mud, grass, etc are all doable again. I've only used it twice but when I took my little nieces to the park, it was great! I could chase them over the grass, push them on the swings and roundabout... I felt like a proper aunty again!

Choosing a Wheelchair

I would put choosing a wheelchair on a par with choosing a car or a house to buy. Let's assume that, like me, you haven't been assessed for a chair on the NHS but you have gradually come to the conclusion that you could use one, so you're thinking about buying your own.

There are so many different kinds of wheelchair. How do you know which to get? Let's have a look at some of them and the pros and cons of each one.

Transit wheelchair

This was the first type of wheelchair I tried - at Manchester Airport (see previous post). The front and back wheels are small and someone has to push you. It was fine when being pushed through a busy airport but when I was left in the departure lounge for an hour before boarding, I couldn't go anywhere. You've got to picture the scene. Busy lounge... people dashing around... shops and cafes and toilets. I hadn't been sitting there long before I started wanting to move around but I couldn't move the wheelchair and I was worried that if I left the wheelchair and walked, somebody might take or tidy it whilst I was gone. If they had, it wouldn't have mattered. I'm sure they could find another quite quickly but if that had been my own chair, I wouldn't want to risk leaving it. So I would only really consider buying a transit chair if I didn't want to retain any independence.

Lightweight Transit Wheelchair Travel Portable Folding Wheelchair (Amazon £59.99)

Self-propelled wheelchair

I'll come back to this in more detail next time, as I have had two different self-propelled chairs, both completely different. For now, let's just say that this type has two big back wheels with rims attached and small front wheels. It has handles so that someone can still push you but the big benefit is that you can also propel yourself along with your hands on the push rims. This isn't an easy task to master. You need good upper body strength and unless you are already quite fit, it will take time to be able to manage whole journeys by yourself.

For me, the reason I chose this kind of chair was that it gave me independence and the choice to sometimes walk.

Drive Medical XSAWCSP18BLST 18-inch Aluminium Wheelchair Self Propel with Solid Tyres Blue (Amazon £169.47)

Electric wheelchair

I won't say a lot about these as I have never used one. It's like a normal wheelchair but with various levels and types of power. The obvious advantage is that you don't need to exert your own energy to get around, nor be reliant on a carer to push you. Hills and cambered pavements are much easier and getting up ramps is doable by yourself. The disadvantages may begin with the price but also it is much more difficult to fold it and put it in the car by yourself. It's heavier.

Betterlife Aries Electric Wheelchair Adjustable Folding Powerchair Mobility Aid (Amazon £649)

Mobility scooter

Again, these come in many different types, from folding portable ones to big Harley Davidson style trikes. They are easy to use, provided you are reasonably co-ordinated and they move at a decent pace. I used one for a while but for me, the disadvantage was that once I committed to going out on the scooter, I couldn't walk at all because you can't push them. Also, even with a portable one, I couldn't get it in and out of the car by myself, so I couldn't be independent.

Boot scooter - travel mobility scooter. Disassembles into 5 manageable parts - 2 Colours (Amazon £399.99)

So you have to really think about a lot of factors. How independent do you want to be (or can you be)? Is portability important to you? Do you want to walk and ride or just ride? Is price a major factor? How often/where do you think you will use it?

Next time, I'll give you the low-down on my new wheelchair and why it's the right chair for me.

Why use a wheelchair?

Sometimes, when someone has only (so far) seen me using a wheelchair and then I stand up and walk, they are surprised. One lady recently said what I'm sure others have thought, "Why do you use a wheelchair if you can walk?" I guess it's a valid question. I'll try to explain why I started using a wheelchair and also when I now choose to use it.

It all goes back to when we were planning to leave Finland. I was flying back and forth to the UK for job interviews, without Neil or the boys to help me. The first journey, I got there okay, though I was extremely tired and my essential tremor went into overdrive. The journey back didn't go so well. I drove to Manchester Airport and returned the hire car and then got the bus to the terminal. I checked which terminal but I must have looked at the wrong flight because I ended up at the wrong one, with my crutches and all my luggage. I went inside and the first person I saw was one of the assistance crew. I asked him how long it would take me to walk to the right terminal. He looked me up and down and replied, "At your speed love, about 45 minutes." He must have seen my face, as he quickly offered me a ride in a wheelchair. I was going to refuse but I realised that I could miss my flight if I walked, so I accepted his help.

I thought I would feel really self-conscious in a wheelchair. I thought people would stare at me. I thought I wouldn't like being pushed. Initially, all of those were a little bit true but when he bypassed all the queues and got me checked in, through security and boarded and I realised I wasn't utterly exhausted, a penny dropped. I could start going places and doing things without being constantly in agony and feeling like I was about to collapse.

Now, I use my wheelchair so that I can go out, enjoy trips, enjoy work and not have to worry about when my strength will run out. Before, I avoided most family outings because I knew that after a short while I would want to go home. Now, I don't think about that at all.

Also, my injury left me with lower back pain if I sit on a hard surface or the wrong kind of chair. My wheelchair is extremely comfortable and supportive for my back. It means I can sit wherever and whenever I need to without causing more pain.

So basically, yeah I can walk. I even enjoy a short walk and my wheelchair helps with that. I can hold onto the back of my chair and walk and then sit in and propel. I can keep swapping. It gives me options and it puts my life back in my control, rather than my pain and exhaustion levels controlling me. When I do this, my official line is that I'm a part-time wheelchair user. Unofficially, I'm doing my Little Britain thing!

Brief History

I'll try to keep a long story very short, to explain how come I'm a part-time wheelchair user.

From Feb 2009 to Aug 2013, we lived in Oulu, a lovely city in the north of Finland. While we were there, we built a house (as you do) and while we were building, I hurt my back. Then, one day, I got a static shock off a plastic plant at work and very soon, I was in a proper pickle! I couldn't move and I had the worst pains in my left leg. Fairly soon, I lost sensation down the side of my leg and in some other places that I shouldn't mention. I realised too late that I had cauda equina syndrome (CES) and had surgery to remove a badly prolapsed disc but it was too late. Nerve damage to my leg and saddle meant some serious changes and we ended up back in the UK, trying to work out how to muddle through without going crazy.

So here's the new me. Sometimes I use a stick:

Other times I use my wheelchair:

Only that was my old wheelchair. Now I've got a super-duper new snazzy one, which I'll be using from now on and that's the one I'll be using to pass on some tips on how to get around and how to begin to feel normal again.