Living on an inert gas phenomenon

I’ve been living with my new Sunrise Xenon for about a week now, having taken delivery on Tuesday.  It is a complete change from my last chair, a Sunrise Q2, which had a 100 degree footrest angle and weighed in at about 10kg.  By contrast, I’m now weighing in at little under 9kg and with a 92 degree footrest.

xenon-logoI’ll start with some basics about the Xenon.  It’s green – a nice, dark green – with 24 inch rims on the back and soft-roll 4 inch on the front.  The seat is 40cm by 40 cm and on a tilt back, nesting me into the angle adjustable back.  I’ve also got an auto folding foot plate.

There is a definite difference in this chair to other chairs – its very well balanced for such a short chair.

frogleglogoI have got some major differences to the previous chair that make a huge difference though.

The first is the Frog Leg suspension, which, coupled to the 4 inch soft roll wheels, mean that I am not feeling every single lump and bump any more.  I like them a lot and they were worth the investment.

Secondly, I have got a lot of pockets – 3 to be exact but considering most chairs have no way to store anything around them, this is a major plus.  One of the pockets is locked under the cushion which offers a secure storage point for things like my wallet or a Double Decker.

xenon-pocketI am no longer seated on vinyl but instead on a Visco memory foam cushion, which is offering my derriere previously unknown levels of comfort.   Actually, in truth, its nice for my rear end to not be sweltering away and it is complimented by the vented upholstery on the back as well.  On the end of the upholstery are the other two pockets.

xenon-brakeThere are other useful bits too – the fold down handles prevent someone from helping me without first asking if I need or want help.  The wheels have a simple change camber, meaning I can switch from 4 degree to 0 degree with the useful tools, supplied.  The brakes sit neatly beneath the under frame to prevent interfering with a side transfer.

As a chair goes, this one is light enough for me to push myself uphill.  That, for someone with a muscle disease, takes real effort.  It is smooth and will roll with minimal effort.  I’ve already taken it on a few trains with some success – its been welcomed by taxi drivers so far too.  It looks smart, I feel comfortable and I trust it not to do something silly like tip back randomly.

The downside is that I’m afraid to get it mucky or the hand rims scratched.

The Anticipation of an International Symposium for Wheeled Seating Solutions

I would be telling fibs if I said that by now, I’m getting excited.  If you are a loyal reader, you both will remember that I tried out a number of wheelchairs over the past 6 months and came to an agonising cliff hanger.  This cliff hanger took place in my own chair though, so no one was the wiser…

But, on International Wheelchair Day, a day when Wheelchairs become International Business Wheelchairs and International Spy Wheelchairs and International Rock Star Wheelchairs, I am going to share with you my choice, but only after I’ve waffled a bit. 

I believe that Wheelchairs play more than just the part of being a choice of mobility to replace or supplement where walking is not an option.  My wheelchair has always been a part of who I am. Touch the handle and I feel it.  I sense all going on around my chair. 

My wheelchair has to be my word day suit, my evening rest attire, my play time overalls, my sick time comfort.  It is the item that I am seen in most – it must represent all that I am and show me to be the person I chose to be in the first glance and the final good bye.

I got married in my wheelchair, I carried my first born, my second born and third born, all in my wheelchair.  I have laughed in it, cried in it, sang, danced, drank, eaten, broken wind (!) and most of all I have listened in it.  My wheelchair is always there with me.  The current chair has been more so – for this paragraph at least – it has been the only chair MBW, Monkey, Nuzzle and Scratch have ever known.

My chair can go fast, it can go slow, it can corner, it goes straight.  It’s quiet on a smooth surface, it’s noisy on the bumps. 

And for all the amount I wish I were walking today, I know that my choice of mobility now will be my noble stead – and I like the chair I have.

So when you see me next, if you know me, its ok to tell me that my chair looks nice, or it needs a clean.  It’s ok to tell me that my light up wheels make you smile or that having the word “Quickie” on the back is inappropriate in a professional workplace. 

But not everyone has a suitable wheelchair.  They are expensive.  Each is custom made to the user and children especially go through them quickly as they grow.  So, on International Wheelchair Day, this is what I ask of you.  Please go to Whizz-Kidz Donation page and give them a little something if you can. 

And I’ll thank you for it – from my new Xenon, if I can.

The Momentum Upon Steel Alloy Propulsion Formula

Its not often I’ll blog about a service unless I think its been something to note.  So, the following is a positive post about a recent journey – I paid for it, I made it and this is what happened.  Continue reading

The Genetics Correlation between Generations

Its been some time since I mentioned about the re-diagnosis business but this is mostly due to a combination of festive holidays and trying to track my notes down from Cardiff.

However, yesterday we had an appointment for Scratch, who has been a late walker and therefore a concern to us. So we met with a genetics doctor from GOSH (Great Ormond Street Hospital) who, after some fun with the family tree, began to look at Scratch, Nuzzle too as they are twins, Monkey as she has some hypermobility – and then looked at me (like a museum relic).

Then she explained about some bits going on in terms of diagnosis techniques that have changed over the years, that actually I should be seen by Queens Square in London but also know that things are less invasive than they were 10 or 20 years ago. The info would be of benefit now not just to myself but to Scratch too, as it can help any possible DNA testing for them. Yes, she said all of this about me.

She suggested starting with a blood test for CK markers on Scratch, and then then gave me a blood test note for DNA storage.

So, I am now resigned to the fact I’m heading for another biopsy but mostly because this will benefit my children now. Probably a needle EMG too, knowing my luck. The only immediate consulation about the impending jabbing was that they offered to take my blood on the childrens ward. They have the freeze spray there. And cool plasters.

The completion theory

I have done it. I know what I want and how I want it, in the way I would like it.

I have made a choice for a new wheelchair – the ease to push, the feel of the ride, the seat comfort. There is so much I think this chair will offer to me that I will be quite happy with it – the method of moving about leaves me really comfortable.

I barely used my feet with the wheelchair, I could move it with ease. I could push it up hill, roll it down again. I found it balanced nicely, requiring very little to for a gentle lift, requiring less to just bounce up a kerb.

Choice made. I am going with the chair that left me happiest – now I am going to be an impatient child awaiting for Christmas day again. Out of the Champion and the Xenon, I know which I want to arrive at the end of this long journey.

(And I still need to choose a colour!)

The Xenon Isotopes

xenon-001Its been a while since I blogged but that I’ll come to in another post. I’ve been with another Sunrise Quickie Xenon since Tuesday – this one with a set of 4 inch casters, drop down handles and an auto-folding footrest.  It also has the optional Frog Leg suspension casters.

As some people know, I’ve been finding this Xenon a much nicer experience than the last time – it has the less-raked front as well and feels a lot more comfortable to use.  It rolls just as nicely as last time.  One thing to confirm – this has pockets on the back and a security pouch on the front like the last one.

xenon-003My typical day will start with going on the train – this chair does it well and will climb the step without the ramp if need be.  This chair is quite composed on the train – it feels really stable and sturdy.  The brakes work well, which is a bonus(!) and the chair moves a lot more neatly in the tight spaces.

Once off the train, in the lift, out the lift and then this is where it does get interesting.  This chair takes no effort to get going and rolls nicely.  It goes nicely down the hill and doesn’t stop until I get to the crossing, which doesn’t require any extra oomph to get going again to get across quickly.  In fact, this chair is fairly smooth all the way to work.

xenon-002So, a tick in the box? Yes, near enough – although I think I am possibly getting too used to the Frog Legs. 

Going through the day, I find its sitting position is not too bad, considering I will usually transfer.  I sat through several meetings, went out for a roll about at lunch and wasn’t fed up by 17:00 – time to go home.

Fall down time – if you have someone tall to push you, they won’t like the folding handles. Its a hardship but if you’re 6ft tall, this is not the chair you want to push. I’ve just realised – “fall down time” – the handles don’t drop but you can see the profile difference.

Once up at the station, its not difficult to push along the platform, a quick shove up the ramp and I’m on the train again and off home. Now here is where I got quite fed up with the previous Xenon demonstrator.  Getting off the train, this chair has a less aggressive seating position and will do a roll back and jump off – without as much risk of killing myself as before.

So, it seems mostly positive? For the most part, it is – however there are some niggles, like the handles not level and a bit low down. The chair has a little bit of side instability (flex) like the Champion had but not as bad.  To lift it is a bit harder than the Champion, which you can pick up with one hand, this one has the seat in the way. Finally, this folds a lot bigger than the Champion and considering we have a VW Touran, it will take a lot of boot space up (a pain when you have a double buggy in the boot).

xenon-004So, some pluses and minuses – I have 3 days left with it.  I’ve really been enjoying the extra pockets, which saves me scrabbling around in mine for my keys.  Do I think I know?  I’m not sure. I was furiously against the previous Xenon, it had irritated me to the point of being prepared to put an order straight in for a Champion. I nearly cancelled this demonstration. But in the Champion, I found myself foot-steering. In this chair, I’ve not done it once in two days. I accept that I’m going to slow down (old age? Most likely) and that I will have to get used to it. I like the way both chairs look.

On Tuesday at 09:15 I’m meeting with the dealer, who will have the Champion with him again – I’m having one race around the car park in both chairs and then I will have made my mind up.

On 23 January, I will be confirming it – then I’ll tell you all, too.

Uncertainty in a procurement exertion

I’m not sure how this is usually meant to go… I have never been offered a serious choice in this type of change. I recall feeling really proud, strong, masculine (?) (manly?) in the champion. I really felt comfortable in the Xenon but I didn’t feel like I could always move truly like me… But almost something else.

I entered this process knowing it would be difficult. I think I probably had my heart set on a Xenon-esq sporty chair. Actually, I will probably end up with something a lot more sedate but ultimately comfortable.

But musing this over doesn’t change an underlying common element: I feel drained from this and very uncertain. Am I reading too much into the details? Probably. Am I wrong to do so? I think not. I am choosing a new pair of legs. I’ll be damned if this is going to be taken lightly.

At the moment, the champion is beating the Xenon. In a part though, its also down to how Sunrise have treated this potential new chair – I have not yet felt like they are serious about it, there is no attempt to make this experience about me, rather than being a pain in the backside.

Balancing an Inert Gas

I somehow knew last night that I would have a concept of if the Sunrise Quickie Xenon would be the definitive wheelchair for me… I felt confident, because I’d had a comfortable weekend…

This morning, the lack of brake on the left because we hadn’t re-tracked it did my head in.  It was horrible taking down hill because my bag got caught in the wheel.  The foot bar kept coming off. By the time I got to my desk, the 3 inch casters had really annoyed me and I really wasn’t in the mood.

Throughout the day, the bar coming off kept annoying me.  But the cap on the day was getting off the train – it didn’t work – the chair, with the really short wheelbase, nearly dropped me down the gap between the train and the platform edge…

At 18:30, I’d had enough and I really wasn’t sure if this is the chair for me. 

Sunrise, take note – if you supply a demonstrator, supply one with slightly bigger casters, handles and a decent foot rest.

I now feel pretty down about the whole experience. I wanted to try a chair that could revolutionise my life… instead, I feel like I tried a chair that would make my life harder to live than ever.

An inert gas formula

I’ve been living with the Sunrise Xenon for two days now.  I am going to give a summary of it but tomorrow it will be put through its paces properly – and it’ll be interesting if my opinion of it remains the same… if you have read previous entries, you’ll know I’ve already tried out a Kuschall Champion.

This particular chair is white.  It is a horrible colour for a wheelchair but it stands out, I guess.  The casters on this chair are on a curved fork standing away from the chair, in line with the rear wheels.  The front bars dropping to the foot rest curve slightly and make the chair look like it was designed for someone who is in their teens, whereas on the champion it has a more flowing and smooth look to it (although the grey paint helped).  This demo chair also has no handles but comparing the height to my own Q2HP, there is very little in it – sadly though we can’t find out how it is to push up the hill and goodness knows how I will find out tomorrow leaving work…

Rather than a side ways brace to support the chair frame, this has a cross brace that looks like it has been squished, on which the the seat canvas is mounted, unlike the champion which has the canvas on the seat frame.  The wheels are on two short stems beneath the frame. 

There are two things to note – first off, the horrible way that the Champion flexed on each side independently does not happen.  The second is the non-auto folding footrest is crap – and I mean really terrible.  Getting a Xenon?  Order the auto folding footrest or be prepared for a lifetime of the foot bar coming away from its lock. 

Using the chair – the Xenon takes two good pushes to get going, where as the Champion will go in an instant – the downside is that the Champion would stop quickly too – the Xenon somehow keeps on going.  This particular Xenon is not as bucketed as the Champion, something I am slightly keen/not keen on.  Because my cushion is old, in the Champion it got too firm very quickly, whilst in the Xenon, the lack of bucket seems to help the cushion remain slightly bouncy.  But because of its sharp angle (90 degrees) of seat to foot rest, the Xenon has the feel of a bar stool or a sofa poof – I feel like I am going to roll about and order a couple of cocktails – fine for an hour but I wonder how I’m going to feel tomorrow at work.

Last grip for now – the stupid new brakes – they don’t work properly if your tyres are not at the right pressure… no – really!  You can’t easily put them on if the tyre is over-inflated and they won’t work if its under inflated – a brake designed for solid tyres if I ever saw one.

A positive now – the upholstery on the Xenon is superb, the small bag under the front of the seat and two rear pockets make me feel like I’m sat in something that is going to be a convenience, not a pain to get at stuff… and there is no constant bit of string hanging beneath me.

Tomorrow I will rate them both in a table.  I hope that by 18:30 tomorrow, I’ll  hopefully made up my mind.

The Analogy Thesis

MBW and I were discussing about acquired disability tonight, comparing it to inherited disability with regards of which is harder to come to terms with, psychologically speaking.  Would you, if you acquired a disability, hate knowing what you were now missing out on or if you had a disability from birth, would you lament what you have never had in the first place?

I would like to offer the following:

Imagine your favourite chocolate bar in the world.  Now imagine there is only one bar of it.  What would you prefer: One taste of that bar and know you can never have it again, or never taste it and not know what you missed out on?

Please comment and tell me.  It would be interesting to know, especially from those with disabilities.