Forum Replies Created
April 29, 2012 at 3:19 pm #84487Re: Take The PIP Test Now…..
Well, I passed. Have to say I’m relieved.
The therapy question is quite helpful to me. My PAs put my splints on and take them off every night and do physio and stretches every morning. I go swimming with them at least once a week and I need them to help me use the standing frame and active-passive trainer. I’m sure all of us could actually use assistance to access that kind of therapy, regardless of whether we actually have it or not.April 29, 2012 at 3:10 pm #85352Re: Muscular Dystrophy and BMI
That’s funny. I would think I would come out as totally underweight. I have always argued that given how little muscle I have and a higher percentage of fat in my body that BMI is completely meaningless for me. But it does make going to weightwatchers, for instance, really difficult (besides that fact I can’t get on the scales of course!).April 10, 2012 at 10:49 am #85123Re: Power Wheels
By the way – if you are looking at the power wheels, rather than the powered front wheel, there are basically two different systems that can easily attach onto your manual chair. There is power assist, where you give a little push and it turns into a big one – or there is a joystick control version. I’m not very good at the power assist as I can’t push both sides at the same time so I go round in circles!
The two different systems are the Alber and the Yamaha. Alber is the more expensive system I think. Here’s a link:http://www.alber.de/en/products/mobility-wheelchair-emotion.html
E-motion is power assist
E-fix is powered (joystick control)
I’m sure you can get a rep to come and demo at your house. I think Gerald Simmons does the Alber. Not sure who does the Yamaha.
AmeenaApril 10, 2012 at 10:41 am #85121Re: Power Wheels
I have a pdq power trike and I really like it – but you should be aware that it’s not easy to use if you have weak shoulders – remember it was designed by a paraplegic guy. Also it’s not easy to take it on and off the chair, and it will also make the chair it attaches to a lot heavier because of the bit that needs to go on to attach it. And it’s not strictly legal to use on the road/ pavement – hasn’t been tested in the courts yet.
But, like I said, I love using it to get around festivals, go on walks in the country etc.
There are at least three different ones available – the pdq (the business went bust but you can still get them from Da Vinci), the one made by team hybrid and another one which is made by Da Vinci. I’m thinking to get a new Trail Rider (Da Vinci) as it has reverse which the pdq doesn’t have and it’s a lot lighter so less work for my PA getting it in and out of the car.
Why not call up the reps and get them to bring them for you to try out.
AmeenaFebruary 20, 2012 at 11:13 pm #84624Re: Hate being pushed- my top ten
Mine get a training session (from me) before they do much pushing. Happy to give you all my tips if you want via pm. I tell them straight out that they don’t make wheee noises, they don’t tap the handlebars, and no, I am not a coat stand. That goes for friends too. Oh, and I’m capabale of putting my own brakes on, so that is definitely not their job. Family do not get to push me anywhere as I can’t tell them what to do/ not to do. Sounds like maybe you need some help in asserting yourself in laying down the rules of what is and isn’t acceptable when you are paying them to do a job.February 20, 2012 at 11:09 pm #84632Re: Best place to buy a wheelchair in London?
Or, wait til the mobility roadshow in the summer. Try out lots and talk to the reps and decide if there are any (of the reps) that you like. Take a business card and get them to come to your house.February 20, 2012 at 11:08 pm #84631Re: Best place to buy a wheelchair in London?
Go to GBL wheelchair warehouse in Twickenham if you can. Arrange a session with Ian and he will get you to try lots of different types. Then go away and think about it before you buy anything. You can’t access wheelchair services? Or don’t want to? Or have a voucher?February 11, 2012 at 2:52 pm #84461Re: Limited capability for work questionnaire
All, please don’t shoot me. I don’t agree with the way that ESA and the WCA is being brought in, and I certainly do believe that if someone can’t work then they should be supported by the state. After all, that’s the civilised society we live in. BUT – I have pretty severe MD. I know I am lucky – I don’t have pain or fatigue; I certainly don’t consider myself ill and I am very lucky to have a good care package that lets me live me life as I want. But physically I can’t walk, I can’t transfer independently, I can’t lift up my arms. In fact the only things I can move are my hands and my head. But I still work full time and when I have been out of work I claimed Job seekers allowance, as I have never felt that I was too sick to work. I do believe that it is not necessarily someone’s impairment that means that they are unable to work, but the support structures around them – and I think that the assessment process should be looking at this holistically to put in place the housing, care, psychological support, transport and whatever else is needed to help people into work. I think that an assessment that comes from the perspective that people are able to work and then helps them to do that is the right way forward. Of course, in an economic situation where jobs are scarce there is a question of why go to a lot of effort to make this happen – that’s what brought ICB in in the first place, isn’t it? I just feel uncomfortable hearing about people who are scared of an assessment process that might say that they are able to work. Do we agree that it is the process that is flawed and not the principle?
And I will say, that there will come a time when I genuinely believe that working is too difficult for me, and I hope that the state will recognise that and support me. I also can see that there may be a time when I think I would like to enjoy not working while I still have the physical ability to do that – and that would be nice to have too. But I do worry that we could be seen to be fighting against something that I thought we actually wanted – not to be discriminated against in the world of work?
As I said, don’t shoot me. I don’t envy anyone having to go through this horrible process. I will be doing it with PIP I am sure, and I face it every time a social worker decides it’s time to review my care package. It is horrible to feel that your future is out of your control – and we have enough of that already with MD, we don’t need the state to mess with us too! I avoid contact with my local authority for just that reason as each time I speak to them I get severely depressed as they try to force me into another new situation.
I just think it would be good to have a debate about the principles of work, not work, ESA vs JSA etc.February 8, 2012 at 11:06 pm #81221Re: Beds / mattresses
I think I have the opposite problem. I was told I HAD to have a profiling bed and pressure relief mattress and had my lovely wooden bed and bouncy mattress put away. Result was that I could no longer turn over in bed so had to wake my PA up several times a night, I had a sore back and so did PA who had trouble putting my splints on and doing physio. Since I had the thing for my PA’s benefit off it went after trying out for 3 months.February 8, 2012 at 10:56 pm #84074Re: Sheets and nightwear
I would never go with something called satin that is not real silk as this is generally 100% polyester which I find very sweaty and uncomfortable. For me it is worth paying for the real thing. But – everyone is different so if it works for you then go for it.February 5, 2012 at 5:55 pm #84072Re: Sheets and nightwear
I always wear real silk pyjamas. Yes, they are expensive (between £50-£150 per pair) but I don’t have many luxuries and this is one of them. Slippery and warm! I’m also planning to get some silk sheets. Or I might get a silk duvet cover and sleep on top of a duvet – to give me comfort and slideyness.February 5, 2012 at 1:18 pm #84262Re: Have I said how much I hate moving and handling ‘laws’?
I also use a standing transfer (bear hug) and am kind of stuck with my current agency as they are the only one that agreed to this after numerous risk assessments. The breakthrough for me was that they employed a physio who came and saw what I was doing – and also my own physio put in good words for me. Anyone who tells you that any kind of transfer is “illegal” doesn’t understand the law. Every action neeeds to be risk assessed – from the point of view of both the client and the care staff. In my case I was able to show that alternative transfers were either dangerous or impractical. As part of the deal the agency must send me PAs who are fit and active and well trained in back care. I have alternatives: a hoist, slide boards, transfer belts etc available if anyone chooses to use them (and noone ever does – it’s more likely that I insist because I don’t feel they are good enough at the stand). They also have a “let them fall” policy and I have insisted that this be changed in my case. It does help that I weigh only 45kg and I control my weight through a strict diet in order to keep to this. Having to only use a hoist or slide boards would be very restrictive although I know other people do this and there will come a time when I have to also.
Feel free to PM me if you want any more advice or thoughts on how to deal with this. It was a very difficult time for me when I was under scrutiny from the agency but I am in a fairly good place with it all now. It’s true though that H&S are two very dirty words in my hearing!
AmeenaJanuary 23, 2012 at 11:39 pm #81865Re: Learning to drive/buying a car?
I drive a standard automatic with lightened brakes and super light power steering. I use my right foot for accelerator and left for brake. I’ve tried hand controls but I didn’t get on with them, and to be honest, my shoulders are probably too weak to use them, and to use the steering wheel one-handed.
Go to a mobility centre and have a driving assessment. They will test your reaction times and limb strength and advise you on the best kind of adaptations. Don’t automatically think that hand controls are the answer, just because your legs are weak.
AmeenaJanuary 15, 2012 at 12:49 am #84146Re: Standyuppy, Two-Wheely, Electric, Scootery Thing ??….
It’s expensive because of the way it balances on two wheels I expect. Interestingly I remember it being marketed as a mobility aid at the roadshow a long time ago. Now it tends to be used as a rich person’s toy or for security on private land. Not legal on the public road.January 7, 2012 at 2:56 pm #83926Re: Compact, Portable, Travel wheelchairs
Well, there are lots of good wheelchairs out there and most of them fold. I would recommend getting a lightweight folding self propelling chair with transit wheels. It’s worth paying for something light – an “active user” chair that you can actually push yourself – even if it’s only a bit. It’s also worth getting something that is going to be comfortable on the kind of terrain that you are likley to need it on. For instance I doubt these chairs would go over grass or gravel or anything rough – the kind of surface you might find walking over tricky. I would recommend going to the mobility roadshow or somewhere like wheelchair warehouse (south west london) or epc (sheffield) and actually trying a load out. The guys who run these places are wheelchair users and will generally give good advice. You can also try putting them in and out of your car. Have a good look, try them out, then go away and think before handing over any money!
All the best.January 7, 2012 at 2:50 pm #83953Re: bad circulation
Yes, I have rainaulds as well – although only a mild form. I always carry a hot waterbottle. If my fingers go really numb I tend to suck them!
We also feel the cold because we don’t have a lot of muscle firing off to keep us warm – muscle is what generates heat in our bodies. I tend to stay off alcohol these days because it lowers body temperature and when I drink I get the shakes and can’t warm up even with three hot waterbottles!January 4, 2012 at 10:08 pm #81056Re: Magic Scooter Store….
I have a scooter store for my power chair at work. If you get one make sure you get the remote control. The buttons are really hard to press and it takes a long time to open and close. With the remote at least you can hold it in your hand while you press.