wheelchair or not? (Adults)/general wheelchair stuff

[Jayneth]

cheers, superstottie, trekster..

I spoke to my GP this morning.. she told me that the referral to rheumatology is an urgent one, but could still take 6 wks or more since we're running up to Christmas..

I told her the weakness in my left leg happened again when I had a back injury on Friday.. it's recovering again now but still isn't quite right (this happened before, a few weeks ago, then twice in the last 2 wks, but it doesn't seem to make much sense in terms of where the back injury is compared to the weakness.. she'd expect it to be L4 or 5 to produce leg weakness, but the injury seems higher than that..) She asked me about mobility & we chatted about my problems using the stick.. she seems to support the idea of using a wheelchair part time to get me back to uni, but says I should to speak to my physio about it as she would be the one to decide.. (I think she means for an NHS referral?).. but I have Google on standby in case I need to hire one before I see my physio this time next week.
THanks for all your help, I'll keep ye posted!
xx

[Superstottie]

Jayneth, I was referred to Wheelchair services through social services Occipational Therapy, but believe your GP or maybe Physio could do the same. It's great that your GP is supporting your use of one, as this will probably make you more likely to actually use it. I got one prior to me being referred to wheelchair services, and I always felt a bit of a fraud as no one had actually told me I should use one. After I was told by the OT that I should have one, and she would even refer me to get one that would suit me better, I felt a lot better about using it.

Good luck, and I hope you manage to get one and start living your life again!

Bex! x x x

[trekster]

I'm having a problem with my wheelchair, it keeps veering off to the left when im in it making it harder to push.

Anyone got any idea whats going on and how quickly it can be fixed?

Doesnt seem to be doing this at the moment, well since i fixed the footrest with a screw.

[gila]

dont really know about wheelchairs- so, sorry for butting in - but if something similar happens in a car, first thing to check is if one of the tyres has too little air in it/is somewhat deflated...
if after putting air back in it keeps deflating over time, you've either got a faulty valve or a slow puncture

re "to wheelchair or not to" -as so far everyone on this thread has opted for 'to wheelchair', I' ll put in my experience with the 'not to' decision- (well...part of the 'decision' was due to being far too perma exhausted to actually 'fight' for one...)
so yep, there was a time, a v v loooong time, years..., when I really 'wanted' one- but I also really dreaded 'having to'-

for me 'wanting to' was due to evil chronic pain and exhaustion/literally overwhelming 'fatigue' (at my worst 20-30m walking felt like climbing mount everest and I'd literally 'drop off to sleep' from one minute to the next at the most inopportune places and times)-

but I had no dislocations(!!!!), just some mildish subluxing.

and the 'dreading having to' got me to a 'weird' decision- I decided that I would try to enjoy (!) every painful, knackering step that I was able to make - 'for as long as I WAS able to make them...' as I then thought/worried...

and I started to try really 'pacing' and ever ever so slowly 'pacing up' - t'was a v long, v hard journey- I had years of v dire "life??? what life?????!!!! " -
and improvement from 'pacing' everything, trying to exercise/do physio- sure felt mostly like "what improvement!!???"

but after some 5 years ( yep that bl*&^% long) I realized my ability had actually improved 'massively'!
I had started to wake up 'awake' and no longer 'hit by a truck', a supermarket shop for example had become 'fairly easily' do-able (but nope, def not pain free), I could put away the shopping straight away before having a little rest etc etc

a few years on- on a good day I can walk a mile + (a couple of little sit down breaks are still mostly necessary though for that kind of distance) , not pain free, but def without badly increasing pain levels and without getting totally exhausted (yep I will need a rest- but I dont 'crash out'/fall sleep any longer...well, if I attempt to/force myself to walk that kinda distance on a bad day... I have been known to afterwards crash out for a couple of hours)

that said... I have no kids, I havent worked in years- which I think made a huge difference to how possible ever so slowly 'pacing up' was...
and the "what life???!!!" years... were truly horrible!!! (if I hadnt in that time also learnt to 'see and appreciate the little, little things"... I probably wouldn't have coped at all)

so my feeling is... use a wheelchair if that gives you more of a life... BUT still try to 'pace up' your walking ability (v slowly, v gently) and/or try to compensate the lack of 'normal' muscle/body activity with doing physio/other exercises (swimming/cycling which btw def helped me to build walking stamina)-
which of course you also have to slowly, gently 'pace/pace up'
xxg

[Rosie]

Hi all

Gila, i think you have mad a good point there. Although I use an electric wheelchair for most of the time when I am out of the house, I still consider it a pacing tool. It is what enable me to get into the water at least 3 times a week, which is the only exercise my body can tolerate at the moment.
It is also what allows me to do things with my children, and to occasionally socialise. I was not able to really start pacing my life until I was using the wheelchair, and for me this was also when I stopped working.
I often point out to people that deciding to use a wheelchair, like using a stick, braces or crutches, is not a fnal decision, and doesn't mean that you will always use it. BUT, using one for a certain amount of time may in fact be the answer to getting started on improving your condition. This is my answer to the 'giving in' comment that is so often said. For me, I haven't yet reached the stage where I don't need to use it, but I do feel that my condition is no longer deteriorating as it was before. Who knows what teh future holds.

Rosie

[Superstottie]

I totally agree with you both! I use mine purely for pacing, as before I had it I was never going out with the kids and the weekly food shop was wearing me out for the whole week! I do not use mine in the house, or if just walking a short distance, such as popping into shop for a few items, but I do use it for the main food shop and for days out with the kids. I was going deeper into depression when I took the incredibly hard decision to get a wheelchair (a cheap second-hand one) and it has made such a difference to my life that I now have a prescribed one. It took me weeks and weeks to make the decision with the support of my family and health professionals, and I don't think it is one anyone should take lightly. I had been struggling on crutches for about 6 months, most days barely making it around the house, so for me I feel it was the right decision at that time. I would dearly love to go out without it though, and that is my aim, to be able to take the kids out without first having to check if I will be able to manage it in my chair - it may have given me more freedom, but it does restrict me a lot too! I am working hard on my Physio and trying to get my head round the pacing, but I know it will be a long time before I can discard my wheels! Maybe if I didn't have kids then it would be a different decision, as I wouldn't have had the guilt of them losing out to add to the argument for the wheels, so I suppose each person is individual and has to make their own choice. One thing I will add, I think the old 'use it or lose it' is very fitting in this situation! If you become too reliant on a wheelchair you will lose a lot of muscle tone and strength, making it harder to not have to use one!

[trekster]

im having myself measured up for a new wheelchair similar to sheppeys.
im tempted although registered for NAIDEX to get my wheelchair before then and just go to NAIDEX for fun.

The question is could i claim this money back from wheelchair services if i then get a stair lift installed
in my block of flats? Or is that a better question for the OT?

[gila]

sorry going ot

trekster- ...re stair-lift- afaik these are mostly (or only?) used inside your home/flat/house- not really to 'get to' your home/flat-

must admit I'm v doubtful the council would put a stair lift in a communal staircase-
it gets in the way for the other stair users (it might make the 'usable' area for others too narrow)
it could be abused or damaged by the other tenants/their visitors
it would be quite expensive
(and how would you get your wheelchair downstairs?? carrying it whilst sitting on the chair of the lift? there might be 'wheelchair' stair lifts...but guessing... they would be even wider/taking up more stair space and more expensive...)

I'm sure my London council would move me to a ground floor flat rather than put in a chair lift in a communal stair case (much cheaper/easier for them-and this would be imo better use of generally scarce monies)

but who knows...
as in London you wouldnt as a single person, or even a couple, stand a chance of getting a 2-bed council/housing association flat (unless you needed a 'live in'/24hr carer) - I'm jealous
good luck!
xxg

[Rosie]

Hiya

Social services and NHS, whether departments or Ots, will usually only fund items that they reccomend and/or order. They do not fund anything that you have already bought, they have to be involved from the beginning.
I have come across platform stair lifts (lifts person in wheelchair) in places like cinemas, office blocks and hotels, like the one where we go for the residential, but these were all part of general disbility access, not for an individual. Adaptations like this would probably be the responsibility of the landlord or owner.

Rosie

[trekster]

Just to clarify, i live in a housing association place which is part owned by me and part owned by my housing association.
The council own the communal stairs and it is 1 flight, there is only 1 (legal) tenant upstairs in the opposite flat to me
(he has a friend illegally staying). In extreme circumstance my housing association could move me so i might see if this
can happen depending on my OT visit on Friday.

i was planning on telling the OT about my plans to buy a new wheelchair and asking if theres any help for this under
the NHS. Does this sound like a plan?

[gila]

cheers for clarifying - part owning/part HA-changes things- then moving you would be much more complicated- and if there s only one other neighbour using the 'just one flight' of stairs... who knows
good luck!
xxg

[Smol]

Hi Guys look at this. It's revolutionary and I think there will be masses of chair users clamouring for this! new style chair

[Kattykins]

I want one!!

Wow normal shopping!!

[teaspoon]

no good for faintymcfaintersons like me

[Blaadyblah]

I had the same thought - what happens when upright knocks you out - presumably you'd be held upright once in a faint, which could actually be handy since there'd be no 'fall'... even so I'd make an odd sight apparently snoozing in the bog roll aisle...