Monday, 15 June 2009

Not Just A Chair

Oh the dilemma.

If you have had the time or inclination to read previous posts you will have discerned, via the subtle shades of my writing, the merest hint that all is not well regarding the stability of my Muscular Dystrophic condition. Reading between the lines, the more astute among my readership will have gleaned the faintest inkling of my dissatisfaction with the situation, and some may even have gone so far as to wonder what, if anything, can be done to help.

The problem, in a metaphorical nutshell, is that the loss of core muscles in my trunk means that balancing my body has become wearing in the extreme. Every movement requires micro-adjustments and my wheelchair does not give me sufficient support to allow me to rest in one position for any length of time. As a result my shoulders, legs and back ache constantly and physically it is very tiring. The solution would be a new wheelchair that is infinitely adjustable at the touch of a button; but do such chairs exist? Of course they do, if you have the financial resources of, say, the arms budget of a medium-sized developed nation. They are called 'life-style' chairs.

However, having appeared appropriately pathetic before all sorts of doctors, OTs, physiotherapists and wheelchair service personnel the powers that be have determined that, in the long run, it will probably be cheaper and less hassle to give me a super-duper new wheelchair than have me clogging up their waiting-rooms and clinics or writing disparaging blog posts about them whilst demanding ever larger amounts of expensive drugs. To this end a man in a van came this morning with a demonstration version of a chair called a Salsa.

To you a Salsa is a sexy dance with a variable Latin rhythm, to me it's a sexy wheelchair with variable actuators. I was hoisted with my usual graceful dignity into the aforementioned chair and various adjustments were made and measurements taken. You can't buy one of these chairs off the shelf, they are bespoke. The intention is for mine to tilt back and forth, have a variable backrest and adjustable footrests, all controlled from a joystick and set of rinky-dink buttons positioned on my left. The controller seemed to have more buttons than a Grenadiers dress uniform. Obviously I couldn't help but fiddle. After pressing a seemingly random combination I found myself rising into the air. Up up and away I went until I was looking down on Polly and my head brushed the light-shade. It is years and years since I stood so tall. I resisted the temptation to tell Polly her roots need re-doing (they don't! Her hair colour is completely natural) and realised that Sam had hidden the TV remote up on a hitherto unseeable shelf. I hummed that song by the Carpenters about looking down on creation. This was brilliant! It had no clinical value whatsoever but it was still brilliant. Slowly I came back down to earth. The nice lady from the wheelchair service looked anxiously at her notes and reminded me that a seat riser was not in the specifications the NHS were budgeting for. “It's another £1100 more, ” the man concurred cheerfully.

So, here is my dilemma; do I spend more than a thousand pounds on a an extra bit of wizardry that enables me to go up an down and look grown-ups in the eye? I know I don't NEED it, but. . .

They took the demo chair away and have promised to return with a sparkly new one for a second fitting at some unspecified point in the future.

I'll keep you informed.


  1. I hate that you *need* a new chair, but I am glad you are getting one. Maybe you can cry to one of your doctors that you need the going-up-high thingy (I think that's the technical term) for when your bed decides to do just that of its own accord.

    it might work...

  2. Your chair is a fundamental requirement. It needs to do as much as possible and if it can do it, you should have it.
    I know that money is always a factor in these decisions, but you would think the local authorities would see the benefit to your health and well being in giving you the best chair available. Including the going-up-high thingy? That I would like to see..!

  3. Actually I think that being able to look people in the eye, rather than have them always talking down to you would do wonders for your self-esteem. And since it is part of the role of the NHS, etc, to make people feel good about themselves (otherwise why would cosmetic surgery be available on the NHS?) and another part of it is to give people what they say they NEED (by way of providing in vitrio fertilisation for childless couples, a situation that is hardly life-threatening), surely you could make a very good case for needing the elevating chair. After all, it must effect your self-esteem, being looked down upon all the time so you could say that you need it in order to preserve some dignity and help with your mental state?

    ps I am still praying for a miracle.

  4. Yes, you do. I have a Balder Finesse that I use at work and that I am lucky enough that my work pay for. It goes up and down and tilts in space. It also stands up. The up and down function are the most important for me as without them I would not be able to press the buttons in the lift. Actually it's still pretty hard but it would be impossible otherwise. I also got the wheelchair people to put motors on the arm rests so that they change angle at the touch of the button - this means I effectively have the same as your neater arm, but it's a bit neater as it's part of the wheelchair rather than being an add on.

    I'm sure there are some charitable trusts you can apply to for the extra. To be honest I'm surprised the wheelchair service wont fund the seat riser. Is there no way you can convince them that you do need it? I certainly need mine.

  5. Bottom line buddy, you and Polly have paid National Insurance for years.....I think you should have the 'up downy, iny outy, back and forth' bit and get you money's worth.

    Besides NHS team are spending just under half that amount to go and make chocolate for a couple of hours....all in the cause of team building....and you would not believe the amount we waste (5 grand to put in an IT switching system....only to have them take it out again two weeks later to paint the walls....and yup, you've guessed it...another couple of grand to put it all back up). So demand with abandon my friend....then you too can help empty the top shelf when Polly wants all the furniture moved again.
    Having slighted by employer i shall of course remain annonymous.

  6. My scooter has an elevate function and it is useful or a lot--it's not to the same height but for me it helps me reach sink faucets, elevator buttons, and items that are higher.

    I can say this--you won't regret getting it, but you might if you don't think, maybe I really should have gotten that. However, as the holder of a lot of medically induced debt (no NHS in the US) I hesitate to recommend it without a good consideration of finances. And yet, an improvement to quality of life is priceless!

    I'm sorry about these changes but glad that the drs. are getting you some help so you're not in as much pain or discomfort.

  7. A great URL/domain name ... 'how to be an inspiration' is a question everyone should ask when they wake up or go to sleep everyday! If they did the world would be a much better place! We are working on a new medical blog and new website... I found this site great food for thought whilst planning out future articles for Back Care Beds :)

  8. Ooh! Those are awesome!! Check out the wide range of modern chairs from


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