I haven’t done a blog for a while.. mainly cos I seem to have been plagued with injuries and pulled muscles throughout December and January.

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.






2 thoughts on “update

  1. Kati I enjoyed reading your informative Blog
    Yes good idea to give the sensory belt a try out nothing ventured nothing gained.
    Personally I feel safer having a few pounds in the bank for any emergencies that may occur.

  2. It is a worry, the Genie as a standing chair for its price is excellent. After further research the issues with feedback were on an american site so the guy was referring to the american rep for Genie products in USA. I guess they have states the size of the UK over there!!

    If when I did go they had decided they would fund the Genie in full I would prefer that, as I would be able to stand and do things for much longer. so really depends on what they assess my needs as being when I get there and if they be willing to foot the whole bill for the Genie or if I’ll have to accept a cheaper alternative if I can’t afford the remainder to pay.

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