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Thread: whats best length for a mouthstick?

  1. #1
    Senior Member Katilea's Avatar
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    whats best length for a mouthstick?

    Hi

    I'm thinking of teaching myself to use a mouth stick so I can continue to draw as I lose fine motor control and also access my iPhone/use to type with.

    They are difficult to find to buy in UK but I found one site that has two different lengths.

    http://www.activemobility.co.uk/shop...ck-p-1972.html

    I can choose 14-19" or 16-23 ". I wondered what length your mouthsticks are - for people that use them? or which lengths you find most useful for most things?

    Would the smaller length have a smaller mouth piece for smaller person too?

    What else do you use them for? I can see accessing small buttons on tv remotes be easier and turning pages on a book as well? Its seems better value than just sticking an head mouse on my computer which I'd have to find about £700 for and don't want to be using one full time yet for typing.

    However in our winters my hands get extremely painful, as I live alone and if snowed in too it gets very lonely if can't even get online to enjoy a chat with friends cos my hands hurt too much to type. I'd use it then and for finer detail work in my painting so can continue hobby of water colour painting.

    Any tips for this please? I hope to order one just after xmas before get snowed in again and postman can't get here!!

    Thanks

    Kati

  2. #2
    Ideally the mouthpiece should be custom made, but some are designed for an "average" adult mouth. The length has nothing to do with the size of the person, but more with the distance you must reach, how much head control you have, and your posture when using it. The shorter length takes less strength to hold in your mouth and gives you better control.

    Here is a site you may want to check out for ideas of what and how to use one. These products are also good:

    http://mouthstick.net/

    (KLD)

  3. #3
    Kati, you might not be all that happy with this, but are you sure that you need a mouthstick? The general (and annoying) rule with ataxia is that if you can still use something, you don't yet need it. It sounds like I'm several years in advance of you, and there's no way in hell I'd be able to use a mouthstick. But I can still type, use tv remote, iPhone. This is because I've managed to keep function by not using 'aids' (in terms of ataxia these are more 'hinderances'). The levels of proprioception and coordination you will require to use a mouthstick are far FAR greater than the levels required to use your finger, which you can only do if you maintain function and practice. Same goes for using a stander. Living with ataxia is very expensive, especially as you shouldn't buy anything with the future in mind! Always remember, use it or lose it
    Amy

  4. #4
    Senior Member Katilea's Avatar
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    Thanks. So are you saying a shorter length would be easier for a beginner to control than a longer one?

    I'm not very good with numbers/lengths etc will have to try and find a tape measure! would the 14" -19 " go long enough for typing and drawing/painting? The keyboard/easel would be directly in front of me.

    Most time I'd be sat upright but at night I use laptop in bed so semi reclined some of time.

    Thanks

    Kati

  5. #5
    Senior Member Katilea's Avatar
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    Hi Amy

    Yes, I'm aware of the use it or lose it theory, but with our winters getting much colder and worse here (just spent two weeks snowed in and in too much pain to type much) I'm looking for a back up solution.

    I thought using mouthstick at night on laptop in bed means i can keep arms/hand in bed under covers and warmer, reducing pain and giving my hands a break when they are in a lot of pain.

    As i live on own it does get lonely with no-one to talk and unable to get online too to chat to anyone. I just had two bad weeks with depression and pain. At least I would have a way to still be able to chat to someone without making more pain for myself.

    I also can't draw detail like I used to be able and otherwise mean giving up on the painting if I can't make things look as good as before. I like my paintings to look like the thing I'm drawing.. not into abstract really! My plan would be to do most of painting with my hands background washes etc all bits can manage and just do the very fine details with mouthstick, which would usually look rubbish with so much 'shake'.

    i recently got art academy for Nintendo DS and thought this be ideal to train on for drawing skills as i find it impossible to do it with the stylus.

    It's not meant to replace my use of hands completely just to compliment it and enable me to still do things when my using my hands is difficult or painful.

    I don't know what your Ataxia is like but I have 'athetoid/dystonia' type jerky movements in arms on top of intention tremor, I do use weights as well and have still managed to write my own xmas cards this year though each card took nearly 15 mins to write just a few lines. I actually started writing them all beginning of November and the present wrapping!

    I don't have a standing frame but recently bought a TGA active walker which allows you to remove basket and flip seat up to stand within the frame. This allows me to use it with the wii balance board and use it as 'reverse walker' just to walk from room to room. (I know its not meant to be used as one but I cant afford a proper Kaye walker and NHS wont pay £700 for one for just a few steps around the house).

    I can walk in a straighter line using it this way and not hanging onto wall with one hand and walker handle with other like I was with older one with fixed seat.

    I find it helps with proprioception as I know where my body is in 'space' as I can feel and see frame around it, I was gonna try balance belt but I don't think I'll need it just yet using TGA walker this way.

    I'm hoping this will help with enabling me to walk safer around the house for longer as I have experienced quite a few bad falls recently and nearly broke my left ankle the other week. As I was snowed in I was unable to get to hospital to get it checked but luckily swelling has gone down and it seems to be getting less painful to put weight on. A community nurse did manage to get to me once the ice had thawed from road and it isn't broken luckily.

    I find I need to think of future when I get equipment and my computer equipment will work through several stages of progression for me, as once I had no choice but to pay full time helpers I won't have the money to keep buying new equipment as condition progresses.

    Our benefits systems is also changing when I go onto new system they cut money if you have over £6,000 in savings instead of £16,000 so saving up for stuff like standing chairs will be impossible without losing income, unless I get everything before they transfer me to new system!

    Kati

  6. #6
    Quote Originally Posted by Katilea View Post
    Thanks. So are you saying a shorter length would be easier for a beginner to control than a longer one?

    I'm not very good with numbers/lengths etc will have to try and find a tape measure! would the 14" -19 " go long enough for typing and drawing/painting? The keyboard/easel would be directly in front of me.

    Most time I'd be sat upright but at night I use laptop in bed so semi reclined some of time.

    Thanks

    Kati

    As the nurse's post suggests, mouth sticks really are not a case of "one size fits all." While I am sure you can buy or make a fairly generic mouthstick, the more customized a mouth stick is, the more effective it will be in terms of use. It will of course depend what you are using the mouth stick for and how much head control you have, but yes I find that the longer a mouth stick is, the harder it is to control. I tend to use as short a stick as possible because my head control is hampered by pain and spasticity issues in my neck and the effort needed to control a longer stick makes it worse. A telescoping mouth stick would allow you to adjust the length on your own to what is most comfortable and effective for you, although personally I don't like telescoping ones and gave up on using them.

    If it was me, I wouldn't start using a mouth stick for the first time without a proper OT consult to be fitted with one. You don't want to risk damage to your teeth and/or straining your neck muscles from using a stick that isn't a good fit. It doesn't take much for this to happen.
    Last edited by orangejello; 12-21-2010 at 01:27 PM.

  7. #7
    My husband has 3.
    I don't have them out to measure lengths, but one is longer and one has a pincher he can with move his tongue.
    He was fit with them at rehab.
    At that time we hoped he could be alone sometimes, but then the respitory issues took over so someone is here and he seldom uses them.
    Try one and see if you think it helps.
    Last edited by LindaT; 12-21-2010 at 03:09 PM.

  8. #8
    Senior Member Katilea's Avatar
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    I can use my arms its just my fine motor control thats the issue and I used to really enjoy drawing and painting, now its getting impossible After seeing some people do it on you tube I thought I maybe still able to do this hobby to the same standard if I could teach myself to use mouthstick for the finer detail.

    I can hold a pogo stylus firmly in mouth and use iPhone qwerty keyboard problem is cos they are short it ends up so close to your face! It could also be a back up for typing when my hands were very painful as I have word prediction program on it also to speed things up.

    Its not something at this stage that would be used full time but idea was that by time I needed it full time I would be very proficient in my use of it, as I'm not expecting to master it straight off especially with regard to drawing detail.

    As my hands are worse in cold weather I thought it be ideal time to start training with it and give me something to keep me busy for few hours a day whilst I'm snowed in!

  9. #9
    a few thoughts:

    Quote Originally Posted by Katilea View Post

    I also can't draw detail like I used to be able and otherwise mean giving up on the painting if I can't make things look as good as before. I like my paintings to look like the thing I'm drawing.. not into abstract really! My plan would be to do most of painting with my hands background washes etc all bits can manage and just do the very fine details with mouthstick, which would usually look rubbish with so much 'shake'.

    Kati
    the problem with this is that is that in order to do anything, fine or otherwise, you need proprioception, coordination, balance and muscle strength - you can just about manage without one, but ataxia takes out (or lessens the impact of) the first three, thereby weakening the fourth. and all four prop up each other. you can (slowly) get back muscle strength if you lose it, and coordination/balance can improve if you work at it (think about piano or ballet practice), but once proprioception goes, its gone. there are several things you can do to mimic a functioning proprioception system (like watching what you do for example, visually checking your position) but that really only works up to a point.

    im typing this right now, in our freezing cold house, with wristwarmers on. irish weather is bad too! but for me, my ataxia has progressed to the point where i cant write or hold a pen in my hand at all (even to sign my name, or make much of a presentable mark on paper - when i buy something and they dont have chip&pin, my signature ends up a vague squiggle) so all my communication is done over the computer. if i try (ill do it right now!) to use a pencil or chopstick in my mouth to hit buttons on the remote control, i can barely direct the end of the stick to the remote itself, let alone any of the buttons. oh my god, this is the most frustrating thing i have ever tried!!!!!!!!! the thing is, if i had tried to do this 5 or 10 years ago, i might have been able. but if id stopped typing then, my body would have forgotten (for want of a better word) how, and i wouldnt be able to do that anymore. so now, i wouldnt be able to do anything.

    it sounds flippant, but if your hands are cold, wear gloves. i have tonnes - some with no fingers, some wristwarmers, some mittens, some of those convertible fingerless with the flipover mitten top.... my sister has got me a pair of those north face gloves you can use with the iphone for xmas.

    Quote Originally Posted by Katilea View Post
    I don't have a standing frame but recently bought a TGA active walker which allows you to remove basket and flip seat up to stand within the frame. This allows me to use it with the wii balance board and use it as 'reverse walker' just to walk from room to room.
    this is a really good idea. i have very little trunk control or balance, so i cant stay sitting upright at all. but the longer and more often you use it (even if only around the house) the longer you will preserve the function you need to use it. i cant use a simple bath board or stool anymore, which is annoying.

    Quote Originally Posted by Katilea View Post
    I find I need to think of future when I get equipment and my computer equipment will work through several stages of progression for me, as once I had no choice but to pay full time helpers I won't have the money to keep buying new equipment as condition progresses.

    Our benefits systems is also changing when I go onto new system they cut money if you have over £6,000 in savings instead of £16,000 so saving up for stuff like standing chairs will be impossible without losing income, unless I get everything before they transfer me to new system!
    this is a difficult one. i do understand the benefits situation... and it would make sense to plan for the future with something as ill-defined and yet definitive as an ataxia... except for when it doesnt....... i can probably only illustrate that with an example: i got my first wheelchair in 2000. my father came in with me, and he tried hard to persuade me to get a powerchair. i resisted (but because i didnt like the look of them, rather than an idea of preserving function) and eventually bought an rgk style with no push handles or antitippers. after 10 months of pushing around town, i took the chair back to the rgk factory so they could weld an antitip receiver on (did it while i sat in the car park) so i could go up curbs with a bag on my back. fastforward to jan 2007, which is when i got a tilite tr with push handles and antitippers. im now in a situation where i must have antitippers and they must be engaged all the time. with ataxia, its less a case of 'you get too used to them' and more 'you lose the ability to manage without them'. i do have a powerchair now, which i bought for very occasional use - never inside the house, not more than once in 1 or 2 weeks. but i am so phenomenally glad i did not move into a powerchair back in 2000 - i cant imagine the situation i might be in now if i had.

    just going back to the handwriting - keep it up! seriously... and while im not a fan of planning ahead, get a couple blank sheets of paper and sign your name over and over, different styles. then scan the pages, save on your computer as individual files....... and keep for when you need them! i regret that i only have 2 files of my own, and i alternate them whenever i can. there are also several services that will make a font from your handwriting - i wish id done that!

  10. #10
    .....
    Last edited by orangejello; 12-21-2010 at 03:17 PM. Reason: it's not worth offering advice

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