Powerchair - ideas to clean wheels

Spoonie_Turtle

Cyclamen said:

Thanks Spoonieturtle. 

left chair to dry then used it on carpet and it left visible bits of mud in my wake... sigh ... think we need dragons den. 

I am not holding up as well as i had hoped... need to ask for help and quite a lot of it

* widening bedroom door as taking a lot of work, jolting and brain energy t get chair in.. it is narrow.. but i had hoped i would get used to it.. chair is amazing but seems to bring a lot of extra problems to solve.. its going to need support beams so think i wil be looking at a DFG (disabled facilities grant)

* i am going to talk to remap next year but am also going to ask around neighbours/friends to see if i could please look at borrow one of those battery pressure washers mentioned above.. would like t try befre spening that much money. 

* i am currently trying to get a care review to see if i can  get a few more hours for my tea,

very much feel i am sat here with a begging bowl.. 

It's so difficult, isn't it?  But you are not sat there with a begging bowl, you will be advocating for your needs, actively pursuing assistance to live your life well (like nondisabled people get to without all this hassle).  It's not your fault you need more help to live a good life, and you're not asking for luxuries.  You're not asking for a mansion, or for a servant!  You're just asking for assistance that will help bring your quality of life up to a basic level.

Imagine if nondisabled people had to expend all that energy (mental and physical) just to get around the house, to keep it tolerably clean, and to eat on the evenings.  They'd be in uproar!  It would be clearly and instantly recognised as an unacceptable situation.  It's no different just because you're disabled.  The barriers to help come from it costing time and money, which should not be your problem and is not your fault at all.  [It's terrible that you even have to fight, actually, but that's unlikely to change unfortunately.]

knightstyle

Opp, good luck trying some of the ideas posted on here.
Please come back in a few weeks and let us know what works and what is a waste of effort so others can benefit.   You may even like to do a short video of things working or not working.

Cyclamen

Spoonie_Turtle said:

It's so difficult, isn't it?  But you are not sat there with a begging bowl, you will be advocating for your needs, actively pursuing assistance to live your life well (like nondisabled people get to without all this hassle).  It's not your fault you need more help to live a good life, and you're not asking for luxuries.  You're not asking for a mansion, or for a servant!  You're just asking for assistance that will help bring your quality of life up to a basic level.

Imagine if nondisabled people had to expend all that energy (mental and physical) just to get around the house, to keep it tolerably clean, and to eat on the evenings.  They'd be in uproar!  It would be clearly and instantly recognised as an unacceptable situation.  It's no different just because you're disabled.  The barriers to help come from it costing time and money, which should not be your problem and is not your fault at all.  [It's terrible that you even have to fight, actually, but that's unlikely to change unfortunately.]

Oh  I needed to read that this morning .. thank you.

The constant battle has worn me down... i feel a bit 'ganged up on' by the system..it feels like a full time job being chonically ill an disabled yet i am not well enough for full time work or even regular volunteering on a flexible basis.. but yet eveyday the admin, asking carries on. 

Thank you

Bonniepurple

Cyclamen said:

Spoonie_Turtle said:

It's so difficult, isn't it?  But you are not sat there with a begging bowl, you will be advocating for your needs, actively pursuing assistance to live your life well (like nondisabled people get to without all this hassle).  It's not your fault you need more help to live a good life, and you're not asking for luxuries.  You're not asking for a mansion, or for a servant!  You're just asking for assistance that will help bring your quality of life up to a basic level.

Imagine if nondisabled people had to expend all that energy (mental and physical) just to get around the house, to keep it tolerably clean, and to eat on the evenings.  They'd be in uproar!  It would be clearly and instantly recognised as an unacceptable situation.  It's no different just because you're disabled.  The barriers to help come from it costing time and money, which should not be your problem and is not your fault at all.  [It's terrible that you even have to fight, actually, but that's unlikely to change unfortunately.]

Oh  I needed to read that this morning .. thank you.

The constant battle has worn me down... i feel a bit 'ganged up on' by the system..it feels like a full time job being chonically ill an disabled yet i am not well enough for full time work or even regular volunteering on a flexible basis.. but yet eveyday the admin, asking carries on. 

Thank you

Cyclamen, you’re not the only one to need that.  It’s taken me a long time to accept that I’m disabled thanks to an accident, and I feel like I’m constantly doing battle with the system.  I find crutches and a manual wheelchair exhausting but apparently I don’t qualify for a power chair because I can walk inside.  TBH I’d be prepared to self fund but I need a professional to tell me that I need one as otherwise the DWP will just claim I need crutches and can walk around with them.  Technically I can, but it’s exhausting and painful. 

Spoonie_Turtle

Bonniepurple said:

Cyclamen said:

Spoonie_Turtle said:

It's so difficult, isn't it?  But you are not sat there with a begging bowl, you will be advocating for your needs, actively pursuing assistance to live your life well (like nondisabled people get to without all this hassle).  It's not your fault you need more help to live a good life, and you're not asking for luxuries.  You're not asking for a mansion, or for a servant!  You're just asking for assistance that will help bring your quality of life up to a basic level.

Imagine if nondisabled people had to expend all that energy (mental and physical) just to get around the house, to keep it tolerably clean, and to eat on the evenings.  They'd be in uproar!  It would be clearly and instantly recognised as an unacceptable situation.  It's no different just because you're disabled.  The barriers to help come from it costing time and money, which should not be your problem and is not your fault at all.  [It's terrible that you even have to fight, actually, but that's unlikely to change unfortunately.]

Oh  I needed to read that this morning .. thank you.

The constant battle has worn me down... i feel a bit 'ganged up on' by the system..it feels like a full time job being chonically ill an disabled yet i am not well enough for full time work or even regular volunteering on a flexible basis.. but yet eveyday the admin, asking carries on. 

Thank you

Cyclamen, you’re not the only one to need that.  It’s taken me a long time to accept that I’m disabled thanks to an accident, and I feel like I’m constantly doing battle with the system.  I find crutches and a manual wheelchair exhausting but apparently I don’t qualify for a power chair because I can walk inside.  TBH I’d be prepared to self fund but I need a professional to tell me that I need one as otherwise the DWP will just claim I need crutches and can walk around with them.  Technically I can, but it’s exhausting and painful. 

Do you mean from a PIP perspective?  I've had to self-fund for literally every aid I own, including my manual chair that I can't self-propel, and my powered chair - I don't qualify for any NHS wheelchair because I don't *need*-need it to get around inside.  But because I cannot repeatedly or reliably walk 20m I still got the highest rate for mobility.

Or from a Work Capability perspective, they still take into account the effects (in this case, pain and exhaustion) of doing an activity.  You'd have to explain why you don't qualify for an NHS power chair but again, one can still score the highest descriptor for mobilising without qualifying for NHS help.

Bonniepurple

Spoonie_Turtle said:

Bonniepurple said:

Cyclamen said:

Spoonie_Turtle said:

It's so difficult, isn't it?  But you are not sat there with a begging bowl, you will be advocating for your needs, actively pursuing assistance to live your life well (like nondisabled people get to without all this hassle).  It's not your fault you need more help to live a good life, and you're not asking for luxuries.  You're not asking for a mansion, or for a servant!  You're just asking for assistance that will help bring your quality of life up to a basic level.

Imagine if nondisabled people had to expend all that energy (mental and physical) just to get around the house, to keep it tolerably clean, and to eat on the evenings.  They'd be in uproar!  It would be clearly and instantly recognised as an unacceptable situation.  It's no different just because you're disabled.  The barriers to help come from it costing time and money, which should not be your problem and is not your fault at all.  [It's terrible that you even have to fight, actually, but that's unlikely to change unfortunately.]

Oh  I needed to read that this morning .. thank you.

The constant battle has worn me down... i feel a bit 'ganged up on' by the system..it feels like a full time job being chonically ill an disabled yet i am not well enough for full time work or even regular volunteering on a flexible basis.. but yet eveyday the admin, asking carries on. 

Thank you

Cyclamen, you’re not the only one to need that.  It’s taken me a long time to accept that I’m disabled thanks to an accident, and I feel like I’m constantly doing battle with the system.  I find crutches and a manual wheelchair exhausting but apparently I don’t qualify for a power chair because I can walk inside.  TBH I’d be prepared to self fund but I need a professional to tell me that I need one as otherwise the DWP will just claim I need crutches and can walk around with them.  Technically I can, but it’s exhausting and painful. 

Do you mean from a PIP perspective?  I've had to self-fund for literally every aid I own, including my manual chair that I can't self-propel, and my powered chair - I don't qualify for any NHS wheelchair because I don't *need*-need it to get around inside.  But because I cannot repeatedly or reliably walk 20m I still got the highest rate for mobility.

Or from a Work Capability perspective, they still take into account the effects (in this case, pain and exhaustion) of doing an activity.  You'd have to explain why you don't qualify for an NHS power chair but again, one can still score the highest descriptor for mobilising without qualifying for NHS help.

Cheers Spoonie.  I’ve got a year left on my PIP and I’m expecting to have to do battle for it again.  

Westie983

Hi, 

What about those mats that have those really long noodle type threads that you sometimes see on car washing cloths, sorry I may not be explaining myself very well, I'll try and find a photo.


you could also try hand pump action power washer 



Westie983

Cyclamen

Hello Everyone

I had a lightbulb moment yesterday when my PA/carer said it was tricky cleaning the wheels .. not complaining just an observation... 

we've settled on a long handled scrubbing brush thing from oxo good grips and hose when my team can clean up. 
Garden broom and hose moving forwards a little at a time and cleaning as we go if husband (also with health disabilities) is helping..

I am finding myself not as free as i'd hoped.. going into garden is fine if dry but if went it makes floors slippy for husband (walking mobility).. going 'in the world' is much harder and i find i am just avoiding popping out for a few mins to post box as the clean up is exhausting..sigh . 

Cyclamen

Bonniepurple said:

Cyclamen, you’re not the only one to need that.  It’s taken me a long time to accept that I’m disabled thanks to an accident, and I feel like I’m constantly doing battle with the system.  I find crutches and a manual wheelchair exhausting but apparently I don’t qualify for a power chair because I can walk inside.  TBH I’d be prepared to self fund but I need a professional to tell me that I need one as otherwise the DWP will just claim I need crutches and can walk around with them.  Technically I can, but it’s exhausting and painful. 

Bonnie... i can still walk.  The criteria for a powerchair here (and i think nationally) are that a wheelchair is needed inside the house, if outside only is a manual chair.  I was completely honest and said that I can walk but I need wheels most days although not necessarily all the days, and that i often get trapped in bedroom as cant walk to lounge, garden, kitchen etc.    You say its exhausting and painful, i wonder if you are able to move round your home as often as is reasonable and you'd like or if like me you get marooned due to pain exhaustion and flares?   

Worth checking the wording on the wheelchair services county website but also national criteria.. GP's dont always know the referral rules.  

murphyslaw2020

About carpets in your rooms. 

I have been a wheelchair user for 22 years. I have plywood lined floors and when putting carpets down I get wool ones with a rubber backing. The carpet fitters paint extra strong glue onto the whole floor and carpet is stuck down tight right across floor. I find it better with no underlay at all and short pile carpet, reason for this is after years of turning/traction in a wheelchair the movement over carpet can cause tears, the way I get it done it has never ripped. Also pick a dark coloured carpet odd bit of mud will not show. 

For rugs to put wheelchair on, I get those heavy rubber backed rugs that don’t move when wheelchair rolls over them. You can hose them down outside and stand them side on to dry. 

If you can get in shower room with your wheelchair my carer has used the shower hose to clean wheels. I can then transfer using the hoist into another wheelchair and leave dirty chair to dry. If you only have one wheelchair you could probably pick up a second hand manual wheelchair cheaply so you can transfer to a dry wheelchair when you are home. Hope these ideas help.