Forum Replies Created
January 4, 2012 at 7:28 pm #79926Re: Fall to stand
I used to have a mangar booster to get me up from the floor if I fell, of even if I just wanted to sit on the floor, which can be the most accessible environment to do stuff. The booster was basically a hard platform on an air bellows that will inflate and deflate to go up and down – just like their bath lift but with a platform rather than the seat. It’s a shame they no longer do it as it is a much better solution than using a bath lift or the mangar elk, which is a useful piece of kit but not easy to use independently. Would MDC have sufficient muscle (pardon the pun) to suggest to Mangar that they might want to bring it back in? My booster was an absolute godsend to me for many years – I used to take it camping with me so that I could get down to the floor and back up again.January 4, 2012 at 7:00 pm #80766Re: Transfering Using a transfer board vs hoist
I don’t use a slide board unless I have to. I still use a standing transfer with the hard won permission of the care agency I use. It took me (and a very helpful physio) a very long time to convince them to let me, but it was also partly because using a slide board for a year resulted in my having pressure sores and falling on the floor a lot. But one of my PAs (luckily for me trained as an OT) and I did do a lot of research to find the best boards for me, in case the decision went against the stand. We went to the DLF in north London and spent a good 45 minutes playing around with different bits of kit. The best solution we found was this:
a slightly curved slide board – it’s a green one, can’t remember who by but it’s less curved than the banana board
a hip sling that is designed to go with a stand aid – it’s the sling that goes with the Romedic Return from Nordic Care: https://web82.secure-secure.co.uk/walkeze.co.uk/acatalog/Ross_Return2.html
Put the sling on – it goes right under your bum and has handles in two positions. Your PA/ friend positions the slide board and kneels on the floor in front of you, then uses the handles to help move you along the board. Because the sling goes under your hips you wont be pulled over sideways as you would using a simple transfer belt.
I know some people use pillow cases as slide sheets on transfer boards as well. I tend to use a plastic bag if I need something slippy!January 4, 2012 at 2:42 pm #83924Re: Compact, Portable, Travel wheelchairs
What do you need it for? Not meant to be a rude question, but can give better advice if I know what you are trying to do.
For instance I have transit wheels that I can attach to my Kuschall manual chair, then I pop off the big wheels and I’ve got a transfer chair for use in small spaces – like French lifts for instance! In the past visiting a friend in Paris I had to transfer to a stool in the lift, my friend would press the button then run up four flights carrying my wheelchair in time to meet me at the top and then transfer back again!
Do you use a wheelchair currently or are you just looking for something for holidays?January 3, 2012 at 5:42 pm #83227Re: A Little Guidance would be appreciated
Accepting that you need to use a wheelchair can be really tough, but as others have said, if you see it as liberating and helpful that is likley to help you. Try to stop thinking like a non disabled person (aka a person who isn’t yet disabled). It’s difficult because we are mostly conditioned into thinking that using a wheelchair is a terrible, terrible thing. But really it isn’t. And you don’t need to use it all the time. And you don’t need to worry what other people think – just learn to stare right back at them. If a wheelchair isn’t the answer for you then maybe a scooter would be. I found that very helpful in my transition to starting to use a powerchair. The longer wheelbase makes it stable on hills, and the fact that it has handles and a relatively high seat can make it easier to get up from. I always used it around town and then parked it outside a shop and walked inside to browse. It did mean that everyone always knew where I was all the time, but maybe that can be an advantage – depending on your circumstances.
I started using a manual chair when I was 14, but I was never really able to self propel. I used the scooter from age 18 and a manual chair full time when I was 25. Having an attractive, lightweight manual that I am able to propel at least a little bit myself is an advantage. I use a power chair at work – a Balder with all the bells and whistles: stand up, rise, tilt etc.
And as for terminology I prefer disabled person – going along with the social model of disability. I tend to cringe at other terms but I also realise that everyone has their own way. If I’m chatting with disabled friends we tend to use rather less “PC” terms to talk about ourselves but I would never use those when talking to someone I didn’t know well.
All the best with your trip to the wheelchair service. I also recommend getting to something like the mobility roadshow and trying out as many different chairs as you can. Sometimes the private reps can give you much better advice than your wheelchair service although you may find it useful to get a loan chair from the wheelchair service as a starter and just see how you get on, before using a voucher or motability to get something else.
AmeenaJanuary 1, 2012 at 4:23 pm #83381Re: accepting the outcome
Wow! This is such a big topic, and it’s one that I have ideas about but personally have always found difficult. I think it’s an area that is totally neglected by many involved in our health and care. I also think that it is interesting to explore some of the common reactions that people have expressed – is this particular to MD or do people with other diagnoses react the same way?
I’ll give you a bit of my story. I always hated walking and I walked “funny” but noone noticed (except me and my friends) until I was about 7. At 8 I had a lot of horrible tests and a muscle biopsy at GOSH and had a diagnosis of MD – possibly DMD manifesting carrier. The eperience gave me a deep hatred of doctors and a phobia of needles but I went back home and got on with life. I couldn’t understand what all the fuss was about. I was fine before the doctors got involved and I would be fine afterwards. Nothing was going to happen to me. I refused to talk to anyone about it and would not let the words muscular dystrophy be uttered in my presence. There may have been some psychological support offered at GOSH but if there was they didn’t try very hard. Every year I went to Newcastle and saw the very nice Dr Gardner Medwin, but I probably hated him too. My mum had a lot of support from Philippa Harpin, the MDG OT, but I really hated her, because she was the one who said I would end up in a wheelchair – and that I’d come round eventually when my friends started being able to do things I couldn’t. And this went on really right through secondary school and university. If there was something I couldn’t do I just didn’t do it. I wasn’t missing out by not playing sport – I didn’t like sport anyway.
I started using a wheelchair when I was 14 and that was horrible. I remember the visit to Newcastle and Dr GM suggested I speak to a new research student in his team, Dr Bushby. She was really nice and listened to me while I cried and cried. I didn’t use the wheelchair very often, and it did mean that I could go shopping with my friends but I always left it outside the shop and walked most places, even if it was painful.
I was a bit better when it came to going to university. I knew I would have to use a scooter. My mum had bought one when I was 16 but I’d refused to use it so it just sat outside the house for 2 years. In fact, in a new place with new people, it became a talking point and part of my identity. I gave it tiger print seat covers and called it the sex machine. I gave drunk friends lifts home from the pub and it was fun. But I wouldn’t in a million years use a powered wheelchair in case someone might think I was disabled!
And so it went on – and it still does to a degree. My method for coping with change has always been to cross each bridge as I come to it. Don’t think about it, get on with life, and deal with it when I have to because it’s become a crisis. I don’t think that is always healthy though and I have also realised that my attitude as a child came from a deep rooted prejudice against disabled people in my own head. I would like to be more like criptic and be able to look at the future and plan. I’m starting to get there but I think that is very difficult if you are only ever surrounded by non-disabled people. My method worked up to a point: live your life and don’t worry about it until you have to. As long as you can cope with the fact that there may be very difficult crisis points with periods of depression as you get used to the new change.
There is a very difficult balancing act with MD between function and support. For instance a pressure-relief mattress may help with pain but leave you unable to turn over in bed. The fact that I was so stubborn and continued to walk as long as I could meant that I stayed stronger for longer, but how much did I miss out on and how much did it damage me psychologically? How much better would life have been for me if I had gone to a PHAB club or on the disability adventure holiday my mum wanted me to go to? Or maybe even if I’d gone to the special school my mum fought hard to keep me out of?
Things that have helped me with acceptance:
– getting on with life – keeping busy
– meeting other disabled people
– being an expert in what’s out there to help you – even if you don’t want to use it
– getting political about disability access
– time – it took me about 2 years after I could no longer walk
– various care advisers from the MDC – unfortunately no longer available in my area – make use of yours if you have one
Get yourself to all the disability exhibitions and roadshows you can to open your eyes and your mind. Meet up with other disabled people and learn that being a wheelchair user isn’t the worst thing in the world that can happen. Neither is having other people help to get you dressed or to use the toilet (which the whole world seems to think is the most terrible thing ever) or to use a hoist. I still struggle. I do not want to use a hoist, or a powered wheelchair or drive a big van rather than my small car. I don’t know why – but I do know that it is not until I face my own prejudice that I can deal with it. This year I think I will try to seek some psychological support in order to help me through some of the changes I am facing. Like physiotherapy services it is terrible that this does not seem to be easily available and I will probably have to look to the private sector. I was desperate to talk to someone when I was a child but there was noone for me to talk to – or they were there but couldn’t get through to me.
It’s interesting that tuangfox feels sorry for those who aquire their impairments suddenly – such as people with spinal injury. I have always felt the opposite. I will not say that someone who is tetraplegic as a result of an accident (and I know quite a few) has an easy life but there is a before and an after, and there is a concept of rehabilitation and well developed support services geared towards rebuilding a new life – both in statutory and voluntary sectors. Importantly in spinal units there are other people going through the same thing. People with progressive conditions must deal with constant loss and change and acceptance of increasing and different amounts of support. There is no one moment when you learn to live as a disabled person and accept the new life. There is no getting better, just learning how to live with it. But maybe the thing that we do have on our side, as tuangfox expresses, is time. Some of us may not notice the changes and we do have time to prepare if we are willing to. That scooter might have sat outside the house for 2 years, but at least it was there.
By the way, I finally got a diagnosis of LGMD2a a few years ago, 30 years after my muscle biopsy, thanks to the
work of Prof Bushby and her team. I wasn’t too bothered about having a definite diagnosis but perhaps it is helpful for me in learning to think about the future. I would say I agree with the doctors that it will be helpful to you if you can accept and learn to live with your new life but I would also ask them what support they can provide you to do that.
It seems that this strong denial is a common feature of many people with MD. It is a well accepted stage in the “change curve” but I wonder if the fact that the progression is often slow and unnoticeable makes it a more difficult stage to work through than for other impairments. Do people whose MD is fast progressing accept changes more readily, because they have no choice?
Sorry for this long and rambling post. Hope it has been helpful to miracle77, and food for thought for others, as your posts have all been for me.
AmeenaJanuary 1, 2012 at 2:15 pm #83810Re: Alternatives to fingers for using touch screens – soluti
There’s an article about this in quest from mda usaJanuary 1, 2012 at 2:09 pm #83828Re: Cushions and mattresses – pressure issues
Cheers – I’m the same with the bony ITs. Just wish that bit of my behind was the padded bit and not the sides! I’ll have a look at the Roho. I have problems because I’m very short and need to be able to put my feet on the floor in order to transfer, so with a 24inch wheel (that I need to sit fairly high on in order to push) I can’t have a very thick cushion! Too many different things that conflict.
As for a mattress – the one I have on my old bed at my mum’s place is fantastic. It’s just a standard coil orthopedic mattress and on top of that I put two duvets and sleep directly on those. It’s hard but very springy. One of my new years resolutions is to find one just as good for my bed at home – unfortunately it’s very old and not made any more.December 31, 2011 at 4:46 pm #82055Re: POLL – How do you interact with MD?
I tend to read the MDUSA website and their online magazine Quest. I find the articles about living and lifestyle really interesting. Although their healthcare and support systems are not something I would want to have to navigate I find they are much further ahead in terms of understanding, accepting and just getting on with living.January 29, 2011 at 10:27 pm #78500Re: i am 16 and scared of the future
I was diagnosed with MD when I was 8. By the time I was 16 I was using a wheelchair to go longer distances. When I first realised that other people thought of me as disabled and that people thought I should use a wheelchair I was really horrified and angry. But that is so stupid really. There’s nothing wrong with being disabled that using a wheelchair isn’t a terrible thing – it can be a good thing. It can mean you can go out shopping with your friends, or get to the cinema and have a normal life – not be stuck in the house on your own.
Yeah, it’s important to keep exercising and keep in good shape as long as you can. I used to go horse riding and swimming every week, and actually I still walked quite a lot even though I always fell down. And I have a useful bit of kit (a mangar booster) for getting me up and down to the floor, which means I can sit on the floor which I really like doing as I can shuffle about and don’t have to walk!
Do you have a social worker? I used to hate mine and ignored her, but now I wish I had talked to her as it might have been helpful. You might be able to find some equipment that will help you to do more of the things you want to.
All the best,
AJanuary 29, 2011 at 5:48 pm #78807Re: Folding electric tricycle
I think this could be a great thing for people with MD who are still walking. I wish they had been around when I started using a scooter. As soon as I did I saw a massive deterioration as I wasn’t walking as much any more – and then, of course, it snowballed.
I work with the cycle industry and know a bit about electric powered systems. With all things I would say to try before you buy. To get the most from this exercise wise you need something that is electric assist – ie, it just gives a boost when you pedal. Otherwise it’s just the same as a scooter except that, technically, you wont be able to ride it on a pavement or in any area where bicycles are not allowed (some pedestrian zones for instance).
I’d be really interested to know from other people whether these kind of powered trikes and bikes are being used as a “healthy” alternative to scooters (invalid carriages).