Help Yourself!

After reading several links on Facebook about the state of the country and help for those who need it and my own experience of trying to get diagnosis and help from the NHS I have come to the conclusion that we don’t stand a chance basically unless we have the intelligence to work things out for ourselves!

When I tried to get help with my speech years ago when symptoms were just starting an ‘expert’ was sent out who expertly concluded I just ‘sounded deaf’!  (I’d been deaf since age 16 at this point age 35.. and having been born hearing,  had managed to not ‘sound deaf’ for the previous 17 years)

I’ve had a Neurophysio visit who showed me some back exercises which incidentally I was already doing on Wii Fit (the bridge exercise and crocodile stretch one) I asked about splints to help me with maintain walking I was told the NHS wouldn’t fund them for just a few steps with assistance as this is not considered ‘functional walking’… however.. try applying for an NHS powerchair whilst you can still stand and take a few steps to transfer..  THEN.. when they need to avoid having to issue too many.. it DOES count as been able to walk and you don’t qualify!   .. it took 3 attempts over several years for me to get one which was then returned after a year due to electrical failure and after the hassle I had getting anything done I decided it wasn’t worth it,  I’ll find a way to fund my next one myself and get what I think will work best for me!

The passive trainer pedals which have made a big difference to my pain and mobility levels over this last year was a last resort and going ‘against medical advice’ after again been told by an ‘expert’ it wouldn’t work for me.

Passive Trainer pedals

 

Luckily for me I ignored their advice on the splints too,  but as you can’t get splints without a prescription (I was told.. you actually can!) I had my first ones shipped from the US with a Sensory Balance Belt.  I also bought my Piedro boots privately.  It was an expensive gamble in total with the boots been over £100 each, the splints,  balance belt and shipping from US were near £200.

 

The passive trainer pedals I took a gamble on after spotting a note on bottom of one site.  I had originally been led to the ones that cost thousands called Theracycles that were originally designed for people who were actually paralysed.  After coming across the Oxycycle (above)  by accident and looking for site with cheapest price I spotted a note on one site saying that these were NOT suitable for people who were paralysed.  I emailed them to check that they were motorised and why they were so cheap in comparison with other ‘passive trainers’  I was told you needed to have the ability to move your legs to be able to use the Oxycycle and it just assisted with the motor in making the movement more fluent.

 

As the Theracycles were at least £5,000 at the time for the cheapest pedal version I decided to take a gamble on the Oxycycle and luckily it paid off with persistence!  It’s a good job I’m stubborn cos the first few months attempts resulted in it sending my legs into spasms after just the 15 min pre-set time,  but I stuck with it reducing it right down to a single minute and building up… a year later my record has been 90 consecutive mins whilst watching a film,  usually I do 30 or 60 mins though in one go.

I still believe a standing chair would greatly help in my battle to remain independent but due to the cost and weight of the electric versions I have decided to look into the manual versions.

2 different models of manual standing chair

 

They have restrictions in that you can’t move whilst in the standing position so have to come back down again to move the chair, but even standing for 30 mins whilst playing tennis on the  Wii or something would be of help. I figured if you add E-fix wheels to make it electric with a joystick,  (see pic below) you’d only need to come down a little way so the supports were off the floor to move the chair in a semi stand,  this maybe helpful in a kitchen moving between worktops,  cooker and fridge etc as you can stop at any point between sitting down and fully standing up!

Some models require strength in arms and what look like the arm rests are the levers to use your own body weight to pull you up with a ‘gas lift’ assist (kind you find in office chairs to raise and lower),  others have a little battery and powered assist for the standing feature only, which will need to be charged I would think even though the chair is manual.   Even though these are classed as ‘manual chairs’ they still start at around the £5,000 mark.. and if you were adding the E-fix you’d be looking at around £9,000, unless you could make savings by managing to obtain both second-hand.   Still the big pro for this for me personally would be that as  its a manual chair I wouldn’t get stranded,  cos I can switch it back to manual if the battery went.

The E-fix turns any manual chair into a portable powered one

It wouldn’t get me in the park as the path is not smooth enough,  as my manual chairs have very small front castors but is ok for indoor venues such as shopping centres and you still retain a folding chair to fit in a smaller car boot.  Each wheel is a little heavier than a regular 24″  wheel but not any heavier than the chair frame when all the parts are seperate.  The joystick is removable and the battery under the chair seat so a folding seat can still be folded up.

Here’s video of how to take apart and fit in a car boot:

http://www.youtube.com/watch?v=40kNATWXpw4

 

I plan to keep an eye out for these second-hand to see if I get myself one in the next year or so,  but first need to organise a demo to see whether I could manage the version with gas lift or would need the battery assisted lift to stand.  I think if you disagree with what your health provider says will work,  you need to be prepared to do alot of research to work out why and what you feel would be a better alternative for you.

 

 

Just a Fun post: Advert for Canine Helper

This post is just for a bit of fun but I wondered if dogs could read, how many of them would apply to be my next Assistance Dog!! 😀

“oooh… here’s a good job!”

WANTED CANINE HELPER

Your challenge should you wish to accept is to work as my partner to help me remain independent.

Your responsibilities:

You will be working everyday, throughout the day but get time for  rest breaks, playtime and walks. Some events do not happen everyday,  some events will happen in the middle of another one.  eg.  You need to tell me when my textphone is ringing or someone knocking at door or ringing doorbell regardless of what other job you are doing or if you are playing at the time!

You MUST tell me if the smoke alarm goes off by giving the danger sign (dropping to floor not leading to sound)  in case it is ever a real fire.

Helping with dressing and undressing

Laundry duties:  including removing clothes from washer and dryer and carrying peg basket outside,  picking up any pegs dropped

Tidying your toys away

Helping Inca (my elderly dog) ie opening or closing back door for her if she wants to go out (if I have transferred to bed or sofa) and helping her tidy her toys away.

Public duties: You will be expected to come with me to help with shopping trips and must be on your best behaviour at all times when you are working in public.

You must watch me closely for signed commands to what I need you to do and stay by my side at all times in public places when you are working.

 

In exchange for this you will receive:

An home for life

All the cuddles you need any time of day or night

All Food & Medical expenses paid (and any ‘professional’ grooming costs if this applies)

Birthday and Xmas presents every year for life!

Trips out to parks,  nature reserves and holidays (where funds and transport allow)

At least 90 mins exercise (1 hour mornings,  30 mins afternoon/evening)  on non-shopping days and access to your own garden all day.

Paddling pool, agility course, and ball pit available for outdoor play. (A Flyball launcher is also planned for the near future)

Lots of doggy puzzles and treat dispensers for indoor play on rainy days!

 

So how many applicants do you think I would get?  😀

 

 

Product Review

Trabasack Media Mount

The new Media Mount by Trabasack

I first saw this product as a Prototype last year when it was nick named ‘Monti Media’

With all the equipment I have been collecting since my Ataxia started, I tend to prefer to look for things that are more compact if possible and can do more than one thing, to reduce the amount of stuff I have to take around with me.

The Media Mount is designed as a Trabasack accessory for the Connect (Velcro top) surface.  It can be used in a variety of ways.

I found it very good with the iPad so I could feed it through  the raised end and wrap it around to stop it falling off. (shown with original apple iPad case)

useful for supporting and angling an iPad or other communication device

The Prototype had a zip along the length of it so it wasn’t quite as flexible as the finished product now is.   It’s much more flexible without the zip and whilst I couldn’t wrap the ends around the end of the keyboard with the Prototype,  I can with the finished Monti and makes an excellent wrist support for typing with a keyboard.

in front of keyboard for wrist support

It is also useful for carrying anything that could slide off which you couldn’t velcro to the tray like a plate of sandwiches etc

useful for stopping plates sliding off your knee

You can bend it into different positions, its really flexible and can be used as a guide to keep persons hand in specific spot for example around a switch.

can be used for switch training to keep person’s hand within a target area

… or wrap it around a bottle to stop it falling off tray

As its soft and flexible it can be placed inside the Trabasack out of the way if necessary to hang on the back of a chair until needed.  Or it can be left velcroed to the top of it.

I think it’s an excellent product, multi-functional & well thought out. It adds further functionality to the original Trabasack Connect without adding extra weight to it

You can purchase the Trabasack Media Mount from their online store here for £19.99.

Brief Update

I didn’t realise it had been so long since I last did a post on here!

I’ve been working hard on the Forced Exercise theory with the passive trainer and had some good results.

Passive Trainer pedals

Before I first started on it I was having following difficulties:

• struggling to sit longer than an hour
• getting high levels of back pain
• struggling with control over arms due to increase in involuntary movement
• struggling with balance,  standing transfers and using crutches for a few steps

After a year doing an intensive exercise routine (voluntary.. ie wii fit  arms and legs moving at their own speed) and Forced (moving faster than I would be able to move them)  I have had the following improvements

• I can sit most of day in manual chair and now switching back to manual with powered drive wheels for better portability and to access buses/town etc.
• significantly reduced back pain and core muscles are stronger for sitting/standing with no support behind me
• a slight improvement in balance – enough to make using crutches for a few steps easier when transferring with human assistance into families houses from cars etc.
• reduced muscle spasms from the dystonia element in arms
• better gross motor control of arms (self propelling,  putting arms/legs into clothes, wii tennis etc)
• an improvement in fine motor control (fastening buttons,  zips,  not quite got laces but getting there)
• improved control for handwriting with both hands using Dexteria app for iPad (for improving Fine Motor Control).
• improved function in grip,  working up to holding pen,  stylus better for drawing with uDraw and pencils,  brushes again.
• using right hand to write with again!  (had bad writers cramp in it and had to re-learn to do signature with left hand)
• using rollator more around house than powerchair,  either walking with it (still do better with it as a reverse walker – behind me) or sitting on seat and pushing myself from room to room with feet.

My other big project that I have started recently is I’m applying for a Dual Skilled Dog trained jointly by Hearing Dogs for the Deaf and Canine Partners to alert me to household sounds,  public fire alarms and help me with daily living skills and jobs around the house.

It is a very long process I’ve got application forms in with info but now many people who are been contacted by Canine Partners for info won’t do the reports without appointment to see them or pay them (GP’S!) , so things are been held up waiting for appointments so this information can be sent off,  so I doubt I will hear anything before the end of this year about how long the waiting list maybe.

Hopefully he/she will arrive before my current dog (age 11) is unable to manage helping me or goes deaf herself and can’t alert me to smoke alarm,  doorbell etc, but I may need to do some back up research and find another solution if its’s going to be many years.

could this little guy be my next assistance dog?

The battle for control!

The beginning of  last year (2011)  was a struggle… both physically and emotionally.. I bought a new rollator then I’d wonder if I should still be walking.. my arms would shake loads trying to pull myself up to standing.. I’d struggle to keep hold of the handles as my hands would flex involuntarily resulting in my unintentionally letting go and usually ending up on the floor… crutches were becoming dangerous even on a good day a few steps would be huge risk.. standing was becoming dangerous let alone attempting to walk!

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!

‘Ruby’

My new powerchair arrived the other week.  It is a Quickie Salsa M  (mid wheel drive)  which I have nicknamed ‘Ruby’

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!  😀

Another year….

well I’ve survived another year!. . I’m now 42!

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.  🙂

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!

Invacare TDX Demo

Yesterday I had a home demo of the Invacare TDX SP.

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.