My whole body would shake with the effort of trying to stand,  focus on keeping hold of whatever I was trying to hold onto,  keeping myself upright.. thats without attempting to lift one leg off floor and keep my balance on the other whilst moving forward!  whether I walked or stood that day depended on my muscle tone if my arms and legs were quite stiff it got a bit easier to stand however trying to do things around the house and type when your arms were kind of locked in front of every so often was definitely a challenge!

Luckily it never lasted long but happens at the most inconvenient moments ie trying to get your dinner out of the oven!.. do you leave it a few more minutes and hope they ‘unlock’ before your dinner goes black or see if you can manage it without been able to bend your elbows properly for the next few minutes!

so I was heading for that ‘sorry state’ the bad days were becoming increasingly more frequent than the good days… after trying a standing chair in October 2010.. although I didn’t get funding for that I did get a powerchair off the NHS to use around my house.. part of me was relieved.. the ‘rebel’ in me didn’t want it,  or should I say ‘didn’t want to HAVE TO NEED it’

But some days were just like waking up in someone else’s body and no-one had left you the instructions!  I had two choices I either had to give into it and go on medication to control my symptoms or make a last ditch attempt to understand what was happening and why.. I’ve no idea WHY I thought I could figure this out! ..after all if a trained Neurologist tells me they might ‘never know’..  how was I gonna work it out?

But I had one thing going for me.. I had every day to figure it out and no other cases than my own to work on! I needed to start right back from the beginning…  how was my body meant to work? (without ataxia) .. wish I’d paid more attention in biology class now!  so my study list:

*  how muscles work

*  the role of the cerebellum in Ataxia

* the Proprioception and Vestibular system.

*  the role of the Basal Ganglia in Involuntary Movement

Once I’d worked out that the extra movements were a result of problems with my Proprioception system (ie my brain working out where my body/limbs are in space) I needed to work out at WHAT POINT these issues came into play.  I could lie still in bed,  I could type better sat semi reclined with bedding and front of laptop supporting arms… ‘support’ seemed to be the key word here.

My first set of exercises were to lie on the floor with arms and legs down my the side.. my body had full support from the floor I couldn’t fall off it,  rollover or anything, I’d touch fingers against rug and do same with toes (barefooted for exercises)  do it with eyes open watching them move and closed.. no problems there!.. then tried raising arm off floor or leg.. now here’s where it got interesting…  if I had eyes closed to start with then opened them to see where my arm was it always seemed to be off to the side rather than directly up when I watched it as I controlled it happening… my brain needed to re-learn how it should feel when my limb was in the right position.

How the hell do I teach my brain how to feel my body again?  ..  ok first things first!…  I need to steady the involuntary movements that were a result of this, so my brain didn’t think they were the ‘normal’ thing to feel for… after searching the internet I found the Sensory Balance Belt.

You can see my initial blog on the Sensory Belt here when I first got it in April.  After 8 months with it.. I can do most of the those games shown in the picture .. without it!  (which is just as well after losing 2 stone it no longer fits me!)

My next purchase to make a big difference was my Passive Trainer Bike,  this is a set of pedals with a motor,  you put your feet on press a button and it starts cycling.. mines does roughly 15 mins between 158-162 calories per go… so suddenly I could 30 mins in morning,  30 mins at night and burn around 600cals (500cals a day deficit to lose 1 lb a week)

The Rollator I bought in January is also much easier to use.. the shaky movements are still there.. I still can’t use crutches without the weighted splints to keep arms and hands steady enough to not let go.. and still we’re only talking a few steps with human assistance too.. they only get used to get into brothers house usually when he’s walking behind me.. the steps are still shaky..  but I can still use them.. and it keeps open for me places I can’t get in with the wheelchair.. ie pub toilets in a yorkshire village are narrow and not at all designed to fit a wheelchair in.. even a few shaky steps from toilet door to loo makes a difference!

My routine didn’t just end with lifting arms and legs in the air whilst laid on my back!….. once the balance belt arrived I did exercises from sitting at first on sofa so couldnt fall far back,  lifting legs,  lifting arms,  gripping things,  building up time I could grip things before the intention tremor took over.. which is handy to know how long you got before the shake kicks in, when your trying to pick up a pan or get something out of the oven,  move a tray or plate full of food from kitchen unit to rollator seat to push into lounge!

I got weighted cutlery to help and some forearms splints.. wearing them with the metal side on top for some jobs steadies the bottom of arm and hand and also stops fingers been able to flex so much that I let go of stuff.

with the metal part on top, it acts in a similar way to someone placing their hand on yours to steady it

Sometimes I’d even have ankle weights higher up arm,  with arm splint too, then I’d play games on the Wii for targeting practice,  after months of practising with both on I’d swap splints and heavier weights for lighter wristweights.. now I had to keep my hand from flexing myself.. keep hold of the wii remote and aim on the screen.

With the balance belt I’d graduated from sitting on sofa or in chair to sitting on a bean cube (with nothing behind me) at legs to each side,  in front of TV and playing some games. With Wii Fit I’d graduated from needing a walking frame behind me to hold onto to sitting on it without,  first with legs out to side so sat in a W shape on the board,  then with legs crossed in front,  then straight out. …. then with balance belt removed..  so far I’ve reached the ‘sitting in W shape on board’ without belt and getting on and off without falling over (Don’t forget the games involve leaning to left or right to shift weight once you’re on it) … can also shuffle across floor,  get onto sofa,  get on and off bean cube WITHOUT sensory balance belt on.

I can do the slow games where just stand on board (holding onto rollator)  and just lean left or right without the balance belt now.  I can’t yet sit on board with feet out in front and lean left or right consistently without falling over too far .. it might come… it might NEVER happen..  but won’t know unless I keep working on it! … I was thinking of getting another balance belt once I reach my goal weight.. as its also too heavy for my body currently and kind of sits around my hips rather than my waist and its kind of throwing me off again after working so hard to keep my balance!  I hope some time next year to be able to get a smaller size once I reach the weight I want to be, as I will have gone down a few belt sizes!

I got into Pilates and the core body strength exercises,  most can be done from the floor especially on the game Exerbeat,  it worked best for me with 2 wii remotes (you can use only one or just follow a ‘video mode’).

I could also do all the other ‘dance’ games from sitting either in chair or on beancube as it only registers what your arms are doing with the Wiimotes! …  these were great for arm co-ordination and control.

An unexpected side effect was the weight loss, when I discovered by chance that I was burning more than I thought just getting through the day, but was eating way too many carbs and calories.. enough to keep me at 12st 7!… so I dropped the processed carbs,  reduced calories to 1200 and made my body make its own energy from other food sources (ie protein,  complex carbs in vegetables etc) and dropped 2 stone! (28 lbs for my american friends!)

I also found with more control over arms I could do more vigorous games like boxercise ( I still need the weights on to keep steady enough to do the faster paced games) but that also helped increase my stamina,  strength and found out quite by accident (after a few sleepless nights when I’d got up at 5am to exercise cos I was bored and couldn’t get back to sleep!)  that if I exercised first thing,  it seemed to kind of tire my muscles a little… not enough so I was too tired to do anything the rest of the day, but enough to reduce the amount of extra involuntary movements I was getting.. suddenly I could so some things again without needing weights on arms.. typing.. hitting smaller buttons on remote without having to hold pen in mouth to press them!

It’s been a long journey but 8 months since I started with balance belt.. laying on the floor.. rediscovering how my body worked.. I no longer feel like I’m waking up in someone else’s body! .. I’m not cured.. by a long way…  but I still have functional use of my arms.. enough to stay independent.. even if I do still need weights to do some stuff… thoughts of needing switches and scanning and eye gaze computers have dissipated and been replaced with a new found enthusiasm and appreciation of how my body works and what I can still do 8 years after onset of a condition that no-one knew the prognosis for!

I was disappointed that the big wheel didn’t have the chrome hubcaps as I was shown on the demo model but the NHS said these are quick release ones and will make it easier to push if someone has to push it for me as the chair is very heavy!!  It is heavier than my old one but this one does also have seat riser and tilt mechanism under the seat which I guess also makes it very heavy as the lifting mechanism is metal.

showing seat riser mechanism under chair

I love the tilt feature too to sit out in garden with Inca!

The footplate makes it much easier to quickly flip out of way to get closer to cupboards in kitchen and get in and out of tight spaces. It is noiser outdoors than the other one.  I don’t know if that’s because all 6 wheels have independant suspension so as they are bobbing up and down (3″  ‘give’ each way,  in each wheel) going along roads they make a rhythmic clunk,  same kind of effect as train going over tracks!

This does also mean though that I can get over some terrain better than my standard RWD did,  its better over gravel for a start and I can get up a small uneven path into a field behind my house which I couldn’t do with other chair as its wider than the path and if one side is lower than other at all it will tip.

the independent suspension makes this narrow uneven path accessible

It does  help with fatigue levels too as jobs like putting the shopping away,  and hanging the washing out which used to be exhausting,  is done a lot quicker and I still have energy to keep going and doing some other things.  Today I have to wait for a courier delivery and they never give you a time,  if I’ve gone to lie down,  its hard work getting up and getting to the door before the person has left thinking no-one is in…  now I can just stay in chair and tilt it when my back needs a break.. like whilst I’m writing this at the computer. It is comfy to rest in.

The arm rests flip up and the controller is on swing-away arm.  The actual Joystick is a special design I’m not sure of the name.  it’s similar to my T-bar on my Joystick plus except the middle curves down like a ‘U’ shape and you can rest your hand on it.  The idea is it supports your hand and you can use your arm to drive it.

the joystick can be driven with arm movements rather than fine motor finger movements

The cushion cover I had made by Covers Plus, as the chair only comes in a standard red and I wanted a bit of pink on it somewhere!  I’m looking for a bag with pink/red in it now to go on the back!

Overall I am happy with it,  but still using scooter also for Inca’s longest walks as that does do better over playing fields, in wet weather and can handle light snow.  ‘Ruby’ will be used mainly indoor areas and getting to local appointments on my own,  as with the extra features I imagine it will be expensive to repair/replace if seat riser or tilt mechanisms are damaged.

As for reliability,  we’ll have to wait and see..  but I hope she doesn’t break down too often!!.. watch this space! 

After 8 years I have a final diagnosis,  although they are still unsure what the trigger was.  Neuro’s say there’s not enough proof,  although I have researched extensively on the internet and found Hypothyroidism listed as a cause for all the symptoms I have had so far.

I’ve found links between the extra involuntary movements and proprioception (bodies sense of where it is in space).  Proprioception is a big issue with Ataxia. We have discovered that with proper seating support I can greatly reduce the extra movements and that also additional weight helps (ie wrist weights,  weighted belts,  splints).

Some days are better than others. Some days its much more noticeable than others and depends how tired I am to start with!

Yesterday was a good day!  I woke up early,  we managed to make it down to the big lake for Inca to have a run about,  we love to watch the ducks,  swans,  geese its very relaxing. I managed to fit in quick rest before my friend arrived with her son and hearing dog ‘Holly’.

It was nice to have lunch,  chat and a play on the Wii,  then managed to fit in another rest before going out for a meal with my brother and his wife.  They bought me one of those uDraw thingies for the Wii.  I like to try and draw/paint but as I can’t sit for long I have to prioritise what I can fit in and sometimes by the time I’ve managed Inca’s walks and sitting to do stuff around the house I have to go lie down.  It’s not easy to paint reclined without ending up wearing some of it,  spilling the water and stuff rolling away!

I’m looking forwards to trying this out and hope it will help with keeping co-ordination in hands. I will be doing a review on it later from a therapeutic viewpoint, once I’ve had chance to try it out.  I can see me enjoying been tilted in new chair and sat back drawing whilst I was resting.  I’m hoping I could fit more in then if the new chair allows me to continue working on art or computer whilst resting without having to go back to bed and the time I can manage sat up can be doing more physical things like Wii fit,  housework or going out.

With my trunk fully supported in new chair my movements won’t be as shaky or tire as fast so I should be able to lie there and enjoy drawing and be able to manage it easier.

My Neurologist does not think it will progress any further now,  there are no signs of cerebellar degeneration on my MRI however I have had the ataxic gait since 2003 and the additional involuntary movements (dystonia) didn’t kick in until after I hit 40, although the stiffness has been present from the beginning.  Despite them thinking it is not progressive in that sense, (of a typical cerebellar ataxia) both my arms and legs are affected by both,  my throat muscles (affecting speech and breathing rhythm) and my trunk.  Unless my brain scan shows physical degeneration of the cerebellum they cant offically call it Cerebellar Ataxia,  so it is classed from a medical viewpoint and ‘need to label everything’ as ‘Ataxic-Dystonic Quadriplegia’  (quadriplegia meaning affecting ‘all 4 limbs’ not ‘paralysed’)  This more accurately describes my condition in that the Ataxia started first then the dystonia and they are both combined in each limb.

This can have its advantages,  the stiffness from the dystonia cancels out the tremor from the ataxia so I don’t have a constant tremor although I do get intention tremor on some tasks.  The ataxia also helps weaken the muscle contractions from the dystonia and the involuntary movements interrupt them so I don’t have limbs stuck in positions all the time (as in primary generalised dystonia). so apart from this resulting in slow jerky movements I can still manage quite a lot for myself around the house.

Wii Fit and sitting unsupported on floor/balance board  are still important parts of my physio routine as there are parts of the day when that’s needed to remain independent.  (ie been able to stand for long enough to transfer to loo,  car,  manage a few steps with assistance).

Simple things like been able to sit and have picnic in garden with Inca and play with her on floor for short periods are enjoyable and help preserve sitting balance and strength in trunk muscles.  Been able to sit on the rollator seat and push myself about for a bit also gives me a break from being sat in the same chair all day,  and my legs still get exercise.  Going backwards over the grass gives good resistance and works leg muscles.  the swivelling castors on front also make turning into doorways easier than with manual chair. (especially going backwards) however the hard seat means I can’t sit on it for long,  but its handy for getting from bed to loo,  into kitchen to fetch a quick cuppa to bed etc!

Like my Rollator,  I see my chairs/scooter as a mobility aid that helps me to get to where I want to go I don’t feel ‘stuck in it’,  as I have still used regular office chair to use computer etc up to now or lie on sofa to watch telly or on the bed,  I don’t just stay sat in the wheelchair.  Although for safety purposes I need to stay in chair outdoors in order to go out independently,  I don’t think I will see my new powerchair as something I’m ‘trapped in’ either and I’m looking forwards to been able to get through the housework quicker.. ie putting shopping away and hanging washing out is gonna be much easier and less exhausting with the seat riser feature of the chair and means they are jobs I can do for myself for longer without having to employ someone else to come and do them for me.

The right piece of equipment can be life changing so I await ‘Rubys’ (I always name my chairs!) arrival eagerly. 

I had asked a physio before about those special exercise bikes which move your legs for you. She had said my leg strength and the connection between brain and legs would be better maintained if I used a regular pedal exerciser and tried to do it myself however much more slower/jerky the movements are.  I had been thinking more of been able to burn off much more calories if I could do the pedalling motion more fluidly and faster.

So bearing this in mind I decided to try one last thing before going for a frame that stands me and gives full support.

Last week I had one of the Sensory Balance Belts shipped from the US,  in the hope that it would help me with some standing exercises,  without having to buy an expensive standing frame.

The adult ones are heavy,  mine has 6lbs of extra weight in the belt.  The weight is meant to give your brain a better sense of where your body is in space,  (proprioception) so it can adjust itself and help you to be able to keep your balance better.  As Ataxia particuarly affects balance and proprioception I thought this might work for helping to be able to continue my exercises on the wii,  as I was struggling to keep balance long enough to be able to complete an exercise/game.

Here’s a few pics of some games and me on the balance board.  I do the ‘Tilt City’ one sitting as you have to hold the controller with both hands and I can’t let go of walker for long enough to be able to do this.

For Zazen you just have to be able to sit still!!

Standing games I use include ski slalom, bubble,  and Marbles balance challenge (seperate game)

Tilt City requires you to hold the Wiimote with both hands to tilt the top platform and shift your weight from left to right to move the bottom two platforms,.  the aim been to get the coloured balls into the matching coloured pipes.

I lock my arms around the front of the frame as I find it easier to keep my balance.  If I keep them inside then lean left or right I tend to go too far over and the walker tips.  The wrist weights steady my arms as there’s nothing underneath them for support.

The belt is heavy and the site recommends you don’t wear it for more than 30 mins so I try and have two 30 min sessions a day.  For example today I used it first time when doing laundry,  I find I keep my balance better when having to lean forwards to get things from basket (from sitting in chair or on rollator seat) and pegs and then up..  to hang them up.

The second session I will go on the Wii later for a 30min session.  I have had it on whilst mopping the floors too,  from sat on walker seat.  It’s handy for those little jobs that involve standing up and down,  leaning,  getting out of chair to floor and back up.  (sweeping under the bed and sorting bottom shelves etc) and helps me keep my balance whilst sat on the floor with nothing behind me for back support.  I usually have to prop myself up against something so I can’t fall right back or sit with my legs in a ‘W shape’ (so bum is in middle and a leg out to each side to give myself a wider base).

It hasn’t really changed ‘walking’ for me much,  I still need something to hold onto and my brain still seems to have some difficulty sending the signals to ‘pick up’ my feet and move them forward in equal steps,  but I did seem to keep my balance better whilst I was ‘mid-step’ and wasn’t having to lock my arms as much to hold myself up until my foot had gone flat on the ground.

I’m pleased with the first few tries with it and hopefully I will be able to maintain this function and improve on some of the things after several months of daily sessions.  I would like to be able to stand without having anything to hold onto for longer periods as this would be useful for transfers,  and getting in and out of car seats,  using bathroom in other people’s houses etc.

The test was very easy they started with manouvring around cones in the office and reversing between them and in reversing in a straight line.  I’ve only ever driven a MWD (Mid Wheel Drive chair)  once in my life  – the week before,  but still I found it very easy.  The outdoor part I just had to drive it on the pavement and crossing roads to sainsbury’s supermarket and back.  The clinic was just behind it about 5 mins away.

As I drive over much rougher terrain everyday when I take Inca out twice a day,  I found it extremely easy.

Then they priced it up on what I needed on clinic/medical grounds and the TDX came to about £7,500!!!  I thought as Invacare are the official supplier to NHS that they would pay that and I’d only have to pay if they didnt agree to the seat riser or wanted a different colour… I was wrong!

They will only pay for the cheapest option that meets my needs,  The guy who supplies the chair said they would supply the NHS with a Quickie Salsa M for £3,800 ish (can’t remember exact figure now) and that would have both the Tilt-in-space and the seat riser on but only comes in one colour (red) and they don’t do custom colours on that model.

Quickie Salsa M with comfort seating

I’ve had a look at the pics and information from the brochure.  It has independant suspension on each wheel and an anti-pitch mechanism so the back won’t tip forward when going down a forward slope and visa versa.   I don’t know if I can manage to get a home demo as the company that supplies the wheelchair clinic seems to be the nearest Quickie dealer also and I already have an hour booked at clinic in my name.

So gonna take some measurements today and compare with the TDX which I have already had at home and know where it will fit.  I might know better once I see the actual chair and sit in it.

I’m reserving judgement for now but I have other things to consider.  Yes,  I could afford to put the rest of the money to the TDX,  but then I have less savings left and the new benefits overhaul is worrying me.  As well as ending the one I am on which is my biggest income at moment,  they are also changing the rules of Housing Benefit (HB) from next January HB will only pay the equivalent rent of a 1 bed place for a single person.

I was moved into a 2 bed adapted bungalow in 2006 as the 1 bed place was not big enough to get a manual chair around let alone a powered one! If I want to stay here and avoid moving,  I have to find the difference between what HB will pay and how much this bungalow actually costs.   At least I’m hoping they will offer me that choice and not just move me anyway to put 2 people in here!  I’m not sure of my legal rights here,  since they originally moved me here cos the 1 bed place was not adapted and there was nowhere else available.

Anyway I’m expecting to need to find at least around £500 a year to secure my home,  depending on the difference in costs. so the money I was going to use for the chair would easily cover my rent for about the next five years (allowing for other costs going out too),  so I have that to think about too when making my decision about my next chair.

I’m thinking unless I instantly hate the chair on sight,  I might take the free one if I’m fairly sure I could get in the swing gate with it.

The A frame may not be possible as the lady said she wasn’t interested on whether the chair fitted my environment, only if it fitted me and with the TDX arms in as far as they could go (when it fitted through the A frame)  she said was too tight against my hips and could cause pressure sores if sat in all day with no relief,  so they would have to be widened.

I’m going to ask about the flip up footplate on the Quickie Salsa,  as that would make tight spaces easier to negotiate (unofficially) very tight spaces,  as officially you are not meant to drive it without feet securely on footplate!  They tend to prefer to fit the traditional swing away type but I will try to argue that the calf support that comes with footplate may help keep my legs in position better.. though I guess they could just add calf pads then to the swing away ones!

the flip up footplate comes with calf supports (shown with standard seating)

The last thing to consider related to cost is that if I take the one the NHS are willing to supply they cover the repairs etc so if I was unlucky enough to get a faulty one first they have to pay to repair or replace it.  Whereas if I take the vouchers and pay the other half for the TDX and that arrives faulty,  I’m then responsible for all repairs!

I know from experience that chairs parts are much more expensive than scooter parts and repairs.  My Vibe has been repaired about 4 times and each time has cost around £400 for parts and labour and shipping parts from US.  Each time its been away for several weeks,  I thought maybe if NHS are maintaining it for me I might get a quicker response and repair time and less hassle trying to get a replacement/loan chair if repairs were going to take weeks.

When I got the Vibe they guy said I would get a loan chair if repairs took a long time but I’ve never had one,  they never actually have one available,  but the NHS will have to provide me with SOMETHING until they fixed mine, so there are a few advantages to taking the one they are willing to supply for free.

So.. back to clinic in 2 weeks to try the Quickie Salsa and get measured up for that then I have to decide!

From the video clip it looked really good,  although I had heard it was only available in Red in the UK for some reason.  I thought I’d probably be able to get custom colour though and thinking this was the most likely MWD the NHS would have in mind for me with Invacare been their official supplier.

I wanted to try it at home first,  as when you pass the driving test for powerchair with NHS,  you have to go back to the clinic again to try out some chairs which I felt didn’t tell me whether it would fit through the swing gate or through the A frame thingy at the end of our estate.

I was disappointed at first the man hadn’t brought one with the flip up footplates as requested on the phone (though apparently this was not the person I’d talked to on the phone). I was envisaging having to faff about removing the swing away legrests to get through the gate,  but surprisingly I didn’t need to.

As the chair turns in its own axis I just went in diagonally,  swung the back end round behind me so the man could move gate across then moved front end out sideways till I could drive straight out.  Brilliant!!  the chair turns on a dime!

Next I tested it out on the bumpiest path I was worried with the little castors front and back I’d get stuck but the frame is not fixed.  It’s hard to explain but the front castors can move upwards or downwards from centre point by about 3″  (the centre point been a completely level surface) so when it hits a small bump the front castors simply lift up and over,  this means it can also climb small kerbs without needing a Kerbclimber.

It easily handled the slopes due to the stability lock which keeps all 6 wheels in contact with the ground and the castors abilities to go up or drop down 3″  from level position. I even went up a steep gravel slope thats opposite my home which I wouldn’t have dared attempt in the Vibe as that wheelies just going over the speed bumps in the road! It was much easier to keep in a straight line even when I did the max speed down the hill which I think he said was set about 6.5mph.  On the Genie I could only keep it straight on lower speed with back castors locked so they didnt spin as fast,  but it still ‘fish tailed’ when I went up to 4mph which was the top speed on that.

When we first tried through the A frame, the arm rests were getting wedged as I was having to go in at angle to stop the controller getting scuffed,  the one he had on was quite large.  After he altered arm rests with an allan key and pushed them in as far as they would go I got through very carefully. I will choose a smaller controller when I get mine and also mine will be lower down so the T bar is level with top of arm rest so my hand/arm has support all the way along.  This should also then make it easier to get through there.

As the man had only brought a standard joystick I had to put my big foam ball on top so the controller/joystick did seem quite huge and was fixed (not swingaway) so some improvements could be made there.

Indoors it easily made it through the 90 degree angle between the lounge and bedroom doors and the seat riser function would be a great help around the house for hanging laundry out and reach into cupboards.

In the picture above I still had the leg rests on and managed to get into the nearest cupboard to me,  with them removed I’d be able to get even closer to the washing machine to reach stuff from the other side.

The legrests are a good angle they don’t seem to stick out as much as on the Vibe and you can alter the angle your legs are at so they can be straight down or more raised if you need them to be.

The man said central footposts are not as comfortable when you need to be in a chair for a long time and the flip up footplates stick out much further in front.

Also other colours are now been introduced as standard over here and Black was mentioned which I like.

This pic shows it with black frame and the seperate flip up footplates which do look like they would stick out more.

As I easily got through the swing gate with the standard swing away leg rests in place and the angle is more adjustable I might stick with the standard ones.

If you order the seat riser it comes with Tilt-in-space or you can have just the Tilt on its own.  The adjustable backrest was handy but its another £360 extra ontop of the seat riser and tilt which is £1,540 extra..  which I may have to pay myself if the NHS don’t agree a seat riser is a ‘medical need’

The difference between the tilt and reclining backrest is Tilt moves the whole seat back so your legs are also angled.  The reclining backrest feature only moves the back of the chair.  Apparently there is a manual back recline but the man said it didnt work as the electric one had been put on this demo model.  so I’d have to ask about that at the clinic.  As he hadn’t put an head rest on I couldn’t tilt it really back to try resting position as there was no support behind my neck/head.

He also didn’t seem to know how much it was for a custom colour and when the new colours would be standard (I’m guessing they will add blue,  black,  lime green.. same as US already has) so it depends on how much they would charge and whether black was available as standard by the time I got to ordering mine.

Still my contribution would be under £2,000 if the NHS would agree this is the right chair for me instead of the full cost which he estimated at around £6,500 for the features I wanted/needed on it!

It will cost more than the Genie which stands but that had a few issues that worried me,  the only thing worrying me about this chair is whether I can get it in black or pink!  I am thinking of going down the route of seperate chair and standing frame rather than standing chair.

As, if NHS cover most of the cost of the TDX and I can drop on a second hand or ex-demo standing frame (so can do an hour a day standing) it will be considerably cheaper for me than having to foot bill for most of the Genie as the NHS would not fund that.

So my next step whilst I am waiting, is to look into some frames that will hold me up in standing position for at least half an hour (have two sessions) and still have use of my arms to play on wii or paint etc whilst standing.

Any users of Keystrokes for Mac’s will recognise the way it works instantly and as I already have been using Keystrokes for a few years now I kinda had a feeling this was going to good if it was based on that system!

The word prediction bar sits on top of the qwerty keyboard (when you go into keyboard within P2G app) and simply offers predictions as you type.

You can choose to have as many or as few predictions as you want on it.  Obviously more predictions will make each selection a little smaller so if you do have issues with dexterity you might find it easier to have fewer options.  A child who is still learning to read might also find it less confusing if you choose to have  fewer options.

If you go into settings (iPad settings)  and choose Proloquo2go then Prediction you can choose from 2-10 or ‘as many as fit’

This is what it looks like smaller with more predictions:

This is larger with fewer predictions. I find around 5 gives me a nice size ‘button’ to hit. When you turn it on you get this selection for 5 words

If the word you want isnt there just simply type your first letter eg ‘W’

just type your first letter for the predictions to change

Turning the option on to learn, speeds things up. If you choose Multi Word predictions in the settings it will predict middles or entire ends of sentences  as in the example above.  So if you are using the keyboard as your main communication method and just using the grid for pre-stored information such as about yourself,  medical info etc then using the keyboard then becomes a lot more efficient.

If I had already typed ‘I was in the bath when she called. ‘ the next time I started a sentence with I,  I also got these included.

If you didn’t want that exact sentence you would get different choice by pressing ‘in’ or ‘in the’ rather than ‘in the bath’ on the first screen.

Note it is the punctuation that helps it learn the sentence so if that was a one off sentence I didn’t want it to learn I might just type it without the full stop then speak it,  whereas if it’s a sentence I might say often such as ‘My dog’s name is Inca.’ if I make sure I add the full stop at end the first time I type it,  it will learn it.

If like me you have combination of memory issues and difficulty with co-ordination you may find it easier to spend some time putting sentences in with full stops at end so it will learn your most used sentences and selecting to have fewer predictions.

If its for a child you could put family/pet’s names in with the full stop after and it will predict.  You might want to use this feature to improve literacy skills if your child is able to move on from selecting a symbol to represent a sentence. so may type ‘my rabbit’s name is Fluffie.  (don’t forget the full stop!)  so when the child selects ‘M’, then ‘My rabbit’s’ should appear in the next prediction,  if they select that then ‘name is Fluffie’ should come up etc.

Because Proloquo2go does not just learn individual words, but also word combinations it learns each time you use some punctuation such as comma, period, question mark, etc. I only typed in each sentence ONCE,  as long as you remember to put the punctuation on the end if you want it to ‘learn’ it,  it will come up the next time you try to type the sentence in.

This is an handy feature for a parent who can put the sentences in first ensure that prediction will come up before the child uses the keyboard.

Even typing in general, words for a sentence that you may only type once,  the prediction works well, there is logical choice of words that usually follow each other in sentences.  The Word completion feature built into Apple’s devices still continues to work so between them both you get a very effective system, even if like me you prefer fewer predictions and larger ‘buttons’.

you will find a new option in Proloquo's settingsfor Prediction

On the iPad version the prediction works in both portrait and landscape mode,  but on iPhone/iPod Touch in portrait mode only due to lack of space in landscape on the smaller screen.

The only thing is It doesn’t speak word for word as you type into the larger box,  unless you sent it into the box above after each word,  so a child used to getting verbal feedback after each selection might still prefer to select words from within the grid system.

I have mine set for speak sentence only anyway and its a feature which older user’s may prefer.  It really depends how you use the feature whether its only to type words that you haven’t put on the grid pages, or whether you use the keyboard/word prediction as your main method and the grid as pages of background information about yourself,  condition,  family etc

Overall its an excellent addition to Proloquo2go and my favourite update so far!!

For those of you that don’t know,  I have a rare form of Ataxia which includes extra involuntary muscle movements other than the usual intention tremor, so even at resting my hands and arms will move even when I wasn’t consciously trying to move them.  Intentional movement does make them more jerky so for example if I stretched arm out to reach something a few feet in front of me I might overshoot the target,  undershoot it or hit it exactly and send it flying! (the medical term for this is Dysmetria). on top of that when you manage to grab or grip the thing I also get an intention tremor especially if its something small (like a pen)  or heavy.

As you may be able to imagine this can make things like typing and using iPhones etc quite a challenge!  I have however discovered a few little tricks along the way,  mainly taught to me by online friends who have lived with similar difficulties much longer.  although I do feel these kinds of things should be taught to you by physio’s etc when you are diagnosed with such a condition rather than been left to figure things out yourself!!

When I got my iPad I wasn’t entirely sure how much use I’d get from it.  I knew I could manage Proloquo2go as within the app you can make the buttons as large as you need them to be and I knew I could manage typing in landscape mode cos of size of keyboard,  that was about it.  I didn’t know it was going to be such a large part of my daily life.

With the many apps that are now available most ranging from FREE to around £20 range,  it is easy to cheap to add programs that have really helped my to keep the remaining fine motor skills I have.  Most of these were all free or cheap (59p-£2.99).  I can’t find all prices as when I go back into app store it says ‘installed’ on mine where the price was!  Here are a few examples:

Finger Co-ordination (involving tracing or dragging objects to specific point) :  Drawing Pad, Art n Trace,  Angry Birds,  Art Studio,  Scrabble,  Lexulous,  Words with Friends, Bejeweled 2, Tangram Pro,  Blue Block,  Word Search, Slide It.

The Drawing Pad app has a lessons feature,  it draws a grey line and you trace over it with your finger to make the picture.. good for practising finger control.  I also used Art n Trace which can use any photo to trace.  I used it with some writing exercises.

First press camera icon to find picture you want to use then press the icon next to it (left photo)  resembling a pencil and paper and your picture is covered with a virtual sheet of tracing paper (right) for you to copy the drawing/shapes.  These could also be used for developing mouthstick skills as well as preserving finger control and hand co-ordination.

Another main area was my memory.  When I first downloaded Proloquo2go it was really slow to communicate with because I struggled to remember which category to find each word in.  I got around this by creating my own pages from scratch for the specific situations I would use it.  I always wanted it to get word prediction as at that time I could use the Lightwriter quicker where I just had to press one or two letters and the prediction would appear.   However I have found over the year my memory has improved and I find myself quickly moving between my own home page and the original one and knowing where I need to go to find the next word.

My current 'Home' page on iPad version of P2G

Other games I have used for memory are ‘Simon’ and matching pairs type games.  I recently added a few adventure style games to iPad which I had previously stopped playing, as by the time I got chance to go back on them I couldn’t remember where I had got up to.

Another app I love and has helped with memory and organising my day and activities myself  is ‘Taska’ for iPad where you simply create lists that you tick off when you have done it.

Taska app helps you create checklists for daily jobs or projects

An added bonus from been inspired to practice on the iPad everyday is I can now also manage a few apps on an iPhone.  Although the screen is much smaller my biggest issue was been able to text from it and use it as phone!  With the Tikinotes app which reduces a standard qwerty keyboard to 6 buttons and provides word prediction,  I can compose my messages easily on that and send it to SMS.  I find it easier to use the iPhone with the adapted T-bar stylus.

I found if I hold my arm upside down (using weight of other arm on it too)  and position the T bar so it goes down from middle of fingers I have more control. This makes texting manageable when my iPhone is not in the iMainGo case because its on charge or I wanted to use the photo/video features of the phone.

Another tip I have learnt is that by holding my arms closer to the centre of my body I have more control  for using thumbs when the iPhone is in the case (making it easier to grip)

All these things have helped in other area’s too for example control over arms for doing other jobs around the house and also with using the Wii and just managing things as simple as been able to make myself a drink of Tea without pouring boiling water over myself or get myself dressed.  I’d given up on wearing laced shoes and have loads of pull on tracksuit pants and fleeces and things that don’t need fastening as it was getting such a struggle.  I had gadgets for all types of fastenings but the best thing I have got out of using my iPad and iPhone is better control over my movements enabling me to remain independant for longer.

I would recommend it for other Ataxians especially if you need occasional help with speech now and again but don’t want to have to find thousands for dedicated devices or carry around a PC device and wait for windows to start and your anti-virus to update before you can get your sentence out!   There are many speech apps ranging from very simple type and speak for £1.19, with a simple word prediction for £14.99 or more extensive AAC apps for around the  £100 mark. It depends what you need from it.   Proloquo2go is the most customisable one at the moment with more features been added it can easily match the £5-7,000 devices for communication.

condensed version of P2G for iPhone

The thing I love about Proloquo2go is you can make it your own.  I originally chose this one as I knew I wanted to be able to use it on an iPhone,  as I don’t want to have to carry a larger device with me when I take my dog out just in case I need to ask where they moved the eggs to or what time the milk delivery is coming if I call in the shops.  So whilst my iPad is set up with much longer conversations in mind for things like appointments with doctors,  etc who only see you once and you need to explain quite a lot,  my iPhone is set up just for things I might need to say if I want to nip down to Asda for light bulbs or whatever else I might need.  And just in case I run into an old neighbour who knew my family (and is having difficulty understanding me)  I have a category within starters to tell people what I/we have been up to since they last saw us!

I also use the bar scanning app to add groceries to my online basket the switch to computer to put it through,  you can send entire order through on app but it involves been able to use the built-in iphone qwerty keyboard.  As well as using the Red-Eye remote app to create jumbo touchscreen TV remotes.

Red-Eye TV remote with giant buttons

Were they worth the money?  a resounding YES from me!!

He sent me a Steady Stylus to try. I can manage the iPad keyboard in landscape as the keys are big enough but some games will only play in portrait mode such as ‘Lexulous’ and ‘Words with friends’, which of course means the keyboard is then smaller for typing messages.  Most games I can manage with finger or a thumb too but browsing websites I often trigger the copy and it highlights the whole page or scrolls up or down suddenly when I didn’t want it to (pic 2)  as if when I accidently touch with more than one finger at once it interprets it as a ‘multi-touch gesture’.

The steady stylus makes it easier to aim at specific target when using weighted wristband or holding one arm down with the other.

The Tikinotes keyboard is easier but I still struggle with built in qwerty one

So I thought it would have some use for me on the iPad and maybe make using standard keyboard easier on the iPhone. As my next option for SMS was possibly Predictable’s iPhone app that has in built ‘touch anywhere to scan’ and it would scan though the qwerty keyboard/word predictions and phrases stored for SMS for me and I’d just touch anywhere on screen when it got to one I wanted to stop it.

predictable app allows you to save phrases for SMS and scans down them.. touch anywhere on screen to stop it on the one you want

This would be great for making pre-stored emergency phrases, which I have only found the abbreviation-expansion feature on Zentap Pro but again the keyboard is too small for me on iPhone.  In an emergency you need to be able to get a message out quickly, as I can only text.. been able to store stuff like my address and which service I require and why would be a huge bonus for texting the emergency services SMS service for hearing/speech impaired.  It would work whether I used a finger,  thumb or stylus to press the screen when it got to letter/phrase/word prediction I needed.

the display is crisp and clear, but very small on iPhone. The ability to 'touch anywhere to scan' makes this app accessible to those with fine motor issues.

The Steady stylus would make it easier for me to use my iPhone out of the iMainGo case when I was just texting and the case was on charge or something or I had taken phone out cos I wanted to take a photo.  It’s also easier for me to slide the zoom along for photo and video with the stylus as I find I can put more pressure on a defined point easier than trying to get a finger/thumb in exact spot on the small screen and press and hold at same time.

I have found it easier to activate the ‘press and hold’ feature on Proloquo2go as well that brings up the auto-conjugations (plurals, past tenses etc)  of words on both the iPhone and iPad with the Steady Stylus.

Ivo (the guy who made it) has also done some other custom work.  Here is the adapted headpointer he did for one client.

and adapted some paintbrushes for one artist to do digital art on iPad

You can buy Ivo’s products here and if you have complex needs feel free to email him to discuss them and he could probably come up with a custom solution for you too.

NOTE: It has been brought to my attention that the ‘scan anywhere’ feature does not work in SMS mode on iPhone. This is because the iPhones’s SMS system is not accessible via scanning/switch access.  You would need to first construct your sentences via scanning if needed and save to ‘My Phrases’, go back into settings and switch to ‘Direct Access’ ..relaunch Predictable, go back to My phrases..directly select sentences to go into SMS.

‘Direct Access’ also includes using a stylus by any means ie an adapted mouthstick/head stylus or T-bar/pogo stick in an hand splint could also be used to tap the screen.

Winter are my worst months and often find myself wondering if its the ataxia progressing or just the cold,  it does feel like its been a long winter as we had freezing weather since around November this year instead of February been the worst month usually.  I’ve had fall on left ankle which made it swell up bad it seems ok now though I’ve had difficulty with physio exercises like kneeling cos it hurts ankle if weight is on it. (unless I got splints and boots on for the standing exercises)

The NHS finally acknowledged my letter I sent last October about wheelchair assessment and the Genie.  I have had a few niggles about it since and the guy been based down south means in event of repair I’d have to wait until he was in my area – same problem I had with Vibe which I bought online from mobility store in Preston.  Cost too as well is a worry, especially with the government changing and cutting all benefits.  I don’t want to use all my savings on one thing then have nothing to live on when they cut my benefits for 13 weeks during the change from incapacity benefit to ESA.

If the thing about DLA goes through where you can’t get it unless  its used to pay carers I would also lose it unless I employed an helper then it would still go out on their wages. I’d also lose the mobility part as I’d have to get a van they could transport me in electric chair to save injuries to either of us from getting in and out or car.

I was reading about someone who only got just over £1,000 in vouchers towards an electric chair,  so I’d still have about £5,000 to find.  I was under the impression you got the equivalent to the cost of what they would supply you with and the Invacare Spectra is around the £4,000 mark.  I relaise they would probably get it cheaper as they only buy that brand but still I thought I would receive at least half towards to the Genie.

The spectra seems to come with seat riser as standard now which would help with issues with reaching stuff and hanging washing out,  and the tilt would allow me to rest in it and work longer in office as can take pressure of back whilst sitting.I would hope they will recommend trunk support to help with fatigue from trying to keep body balanced sat up and it reduces shakyness of arms when trying to do stuff when my body is fully supported.

Being able to rest in it I wouldn’t have to keep transferring back onto the bed to lie down every few hours (where most falls occur) and the NHS would service it for me,  saving me money in parts and repairs and not needing to use any of my own money to purchase it or spend months paying back credit cards.

As I’m planning to keep a scooter for Inca’s walks too it would mainly be used indoors and indoors appointments,  with maybe a few trips up into little park a week – although I’m planning to also run Vibe until it breaks down as parts are so expensive,  lights don’t work anyway and I wouldn’t get that much for it on eBay (would cost me more than its worth now to transport via courier!)  If they agreed to the seat riser and tilt it would meet my needs around my house which is all they are interested in anyway!

The standing feature would be the only thing missing and I keep asking myself how often I would stand and what jobs would be safe to do from standing.  It seems a lot of money if I couldnt stand more than half an hour in one go anyway and whether there was another cheaper way to achieve standing exercises?

I’m looking into trying a 30 day trial of a Sensory Belt that’s meant to help your brain with proprioception (where your body is in space),  after realising I manage better with the new walker that I can stand within.  Feeling the frame against sides and back of me when I use it behind me seems to make me less wobbly.

After reading about Proprioception and the brain I’m wondering if the weighted belt will give my brain the ‘extra feedback’ it needs for me to be able stand for longer periods? At just under £70 its a cheaper option than a standing chair and something I can afford to try first with a 30 day money back guarantee.

I also don’t want to lose the ability to take a few steps and if everytime I’m stood I can wheel about where’s the motivation to do another set of exercises using walker and taking steps as well as just standing? It isn’t much and there has to be something for me to hold myself up with,  it’s risky unless someone else is there to make sure I don’t fall over but it makes the difference between been able to transfer independantly or not and been able to get into my brothers house for example who doesn’t have the space at xmas for a wheelchair or large walker to get through their only door with table for 10 set behind it for dinner and bags of presents lined up across the lounge floor!

With someone walking behind me so I don’t have to worry about keeping my balance I should be able to manage that bit for many years as long as I don’t lose the ability to ‘take steps’.  With most of my family been bigger than me its a quick and  easy way to get me from car to sofa without having to get chair out of boot.   For one afternoon a year, its ‘do-able’.

So I’m currently undecided about using the money I have left, to purchase a standing chair at this stage.  that money is also Inca’s emergency money for vet bills as she gets older.  What if she develops an ongoing condition that I have to reguarly pay towards treatment?  the insurance doesn’t cover it all.  (I have first £75 to pay of every claim) They also don’t cover her regular checkups,  home visits cos surgery not accessible, boosters,  glands emptying etc.

I think for now I will try a 30 day trial of the Sensory Belt and see if I have a better idea of whether it will work for me by the time the appointment comes for assessment.