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.
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.
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.
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:
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.