Sensory Balance Belt

Last Year I wasn’t sure whether to go with a standing chair as my next chair or a regular chair with a seperate standing frame.  I was keen to incorporate more standing into my ‘Wiihab’,  but although I can pull myself to standing I can’t keep my balance just stood for any length of time.  I did try the Genie chair last october and enjoyed the benefits of been able to stand for that length of time however it does fully support your body,  so your brain isn’t having to do a great deal of work to help you maintain this and the chair stands you and sits you down,  which I can do myself and is not a skill I want to lose.

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.

Driving Test & Quickie Salsa

Yesterday I had driving test in the TDX chair.

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!