I have a dream….

We all have dreams,  sometimes it involves visiting far away places,  other times meeting a favourite celebrity.

You never expect something as simple as been able to do things stood up,  to be one of them!

I can stand,  but I have to hold onto something with both hands to keep myself steady which means my arms arent free to use fully.  Trying to balance with one arm on walker whilst trying to get something out a cupboard with the other is no easy task.  The act of trying to balance yourself AND use your arms to do something leaves them extremely shaky and if you already have issues from Ataxia,  it makes a simple task almost impossible or at least very much more difficult than it needs to be.

I was thinking of upgrading my chair to one with a seat riser so I can stay in sitting position with body supported by chair and have use of both hands and arms. I have found through experimenting with different seating positions that I have far better control over my arms if my trunk is full supported and I don’t have to use my arms to help me keep my balance as well as whatever else I am trying to do with them at the time!

I looked at cheap chairs that come with standard van seat same as my Quantum Vibe,  the difficulty is because it doesn’t support me very well around my trunk (standard width seating with several inches each side) I still have to use one arm to steady myself when going up/down kerbs/bumps etc.

Searching for custom coloured chairs (cos I fancied pink)  I came across this pic of a pink dragon chair in the snow.

Snow has been another major Issue for me this last winter and after been unable to get out at all for 2 days this february I had been looking at all terrain chairs.

The problem is they are HUGE,  often much wider and longer than standard wheelchairs with huge wheels,  great if you got a big garage to keep/store one in,  but I don’t.  Even with seat riser function to use in kitchen the chair would take alot of space up in kitchen and it wouldn’t fit in office for charging (even if I could get one through the front door).

Then I spotted these pics (below) ,  this is the only chair on the market which lowers you down to ground as well as raising you up and you can also get a standing frame.

The potential for almost total independence again with this chair is huge.  Imagine been able to lower yourself to the ground at any time to pick up something.. Inca can pick some things up but if I drop stuff like cutlery or food she isn’t allowed to touch them.

I could get on the floor to play with her anytime, or play the sitting games on balance board not just on a good day when I got the strength to get myself back onto the sofa,  without pulling my muscles down my sides (which is absolute agony for weeks when it happens!)

Then been able to raise yourself to get into the cupboard,  without trying to precariously hang on to the walker with one hand and get the item out of cupboard with the other.

Imagine been able to stand to wash up,  change a lightbulb,  play on wii fit (without hanging on to a zimmer frame and having to sit back down every few minutes),  standing to carry washing out into garden and hanging it up from standing.

Things I used to do without thinking everyday and never imagined that been able to stand to wash up and hang out my washing would become a future dream!

This chair has the potential to give you back a level of independence you never believed would be possible again after having Ataxia for 8 years (wheelchair user for last 5).

It would be a good motivator to keep my weight under control as there is a 12 stone limit on the adults chair.  I’m not sure if it be too small,  apparently the adult seat can be up to 19″ width and I know my manual chairs aren’t that wide.. think my travel chair is only 16″ but I might ask to try 17 or 18 ” to allow for winter clothing and fluctuating monthly water retention!!

I’m thinking of asking for a demo so I can try it,  I’d like to know if it would possibly be an option rather than spending the next few years dreaming about it,  if it was never going to be suitable…. and after all it’s free… special offer for the day – a taste of freedom!! ..  so why not…   they also offer to help you with funding if its suitable.. of course it would need to fit through the swing gate into the park which would be the first biggest hurdle,  the next would be finding £16,000 to buy back my independence!

but a girl can dream…….   even total freedom around my own home for just one afternoon would be amazing!

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11 thoughts on “I have a dream….

  1. I saw a chap on Deal this week who needed £20,000 for new wheelchair – it’s daylight robbery isnt it?

    If they can make motorbikes and the like for much less, they shouldnt be allowed to make mobility quipment so expensive to buy.

  2. You’ve got to go for it now Kati!

    Clare is about to try and get a new NHS funded power chair. We have been told by a OT friend from another area that she should be able to get one that tilts and leans forward and backwards.

    Do you how much NHS would pay towards a chair for you, do they still do voucher schemes where you can top it up? There might be grants available from charities and organisations to add to it. Can someone local help you with fundraising? The Lions or the pub!?

    See if the local paper will do a story on you as you are such an inspirational person!

    Best of luck, we will help if we can.

    Duncan

  3. It depends on your area Duncan. I know of someone with Episodic Ataxia who got one in her area, but I don’t qualify in mine even though I’m surrounded by hills, live on my own and can’t manage manual chair outside of my own bungalow, unless its totally flat area. I tire easily so it cant be too large an area either, once tried meadowhall but its so big it was exhausting in just manual chair.
    I had helper then, she had to push which straight away cuts off communication as I’m deaf and can’t read her lips when people are having to walk behind me to push me
    I only get to small flat shopping centre about once a year and that’s just about big enough for me to manage with a break half way. (well it was last year!)
    Our local town centre has been redeveloped and now shopping precinct area is much bigger but still sloped so again have to be pushed most of way, but costs me over £20 to get electric chair there in taxi bus with Ricon lift.

  4. Yes, give it a try : ) Agree with Duncan.
    It would be fantastic to have a chair that helps in so many ways.
    I also think you should research funding more and get hold of a social worker or agency. I wouldn’t know how to go about it, not living in the UK, but I gather it will take some time and correspondence.
    You’ve been fighting for independence and at the same time helping others and setting good examples.
    Good luck, your determination to be independent should win them over!

  5. I do not need a chair yet but I want one of those! So cool!

    You are the ‘Gadget Queen’ so I thought I would ask your advice. Bit of a strange request and slightly off track …

    I LOVE trying to dance about to songs on my ipod but have to hold onto the side to stop me falling over. I was remembering when my kids were young and unstable they loved the freedom a ‘baby-walker’ offered. Is there an adult equivalent available for us wobbly types?

    Love Lit x

  6. you need to look for Gait Trainers for adults. They are expensive though, you be very lucky to get one under £500. the frames dont tend to go completely around but either front and sides or back and sides,

    The Rifton Pacer XL is one example. You tube has examples you can see people moving in different models.

    They do tend to be very large, much bigger than standard rollators unless you have a really big house with lots of floor space, you may find it difficult to get about/through regular doorways with.

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