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Gingertop

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About Gingertop

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  • Birthday 10/10/1954

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  • Location
    UK - Birmingham

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  • Membership Type:
    Amputee
  • Amputation Type:
    Left above knee
  • Amputation Date:
    July 2003
  • Amputation Cause:
    Compartment Syndrome and NF
  1. Gingertop

    Nintendo wii fit - Starting to use - any thoughts

    Thanks Mick and Anne. I'm getting into this now and depending on how I feel have done between 15 and 40 minutes on it. I think I'm doing well and improving my scores on most of the games and exercises. It has brought to the for some interesting issues. My balance is often good but sometimes I am putting 70% of my weight on muy good leg. Sometimes I just can't put enough weight through my artificial leg for the game/exercise. If that happens it is amazing the difference it makes holding my arms out (as in tightrope walking) and then moving the arm on my missing leg down. I wonder if there is a therepy issue here. Waling with crutches keeps my arms close to my sides which probably doesn't help. I also have my weight back and really struggle to lean forward- which you need to do to on some exercises. Whats going on here? I can only give the impression of moving my centre of gravity forward by pressing down with my toes (on my remaining leg obviously). I must work on this! Jogging is hard (47%) and I've lost a lot of aerobic fitness over the years but I'll persevere skiing (which I used to do in real life) is getting better and will be a good exercise Snowball fights and the heading game are great fun The marching band game is crazy but I'm enjoying it - and very good at it surprisingly I could only do 250 steps (free stepping) - but will try to build this up Hoolah hoop I can do some days and not others? I'm so sold on this wii fit for amputees that I would highly recommend it. It is very rewarding to find that something which was all but impossible at first is slowly and measurably getting better. Though still only getting 1 star for most things. I may even turn this into a regular blog so watch this space!
  2. Gingertop

    Nintendo wii fit - Starting to use - any thoughts

    Thanks for your replies and encouragement. I've had another go with the Wii Fit I think this will do me good. I was always a competitive sportsman who loved to challenge myself physically. Seven years ago when I had my leg amputated I lay in bed and realised those days were over. Since then I have played golf and archery competitively and I live a reasonably active life but there has not been the stimulus to get fitter. I'm fit enough to for my new lifestyle. Now however this wretched wii fit tells me I have a Wii fit age of 72 (I'm 56) and I get one star out of five on most of the balance games, even some like the steps which I think I did brilliantly at. It has made me realise how unfit I have become - and I don't like it. So now I actually have a set of measurable goals I can strive for. Better though, is that I'm in control. I can stop when I need to (ie just before I get a sore patch) and I can do my 'training' in private. I may even come back on in a few days time and let you know if I've improved. D
  3. The family has just acquired a wii fit. While my son is at school I intend to have a go at getting fit using the wii fit. I have had one go - with mixed results trying various exercises and found the following useful guide written by physios. http://www.wiihabilitation.co.uk/files/wii_fit_bro_uk_traffic_light_version.pdf It might help me and others if people could post their thoughts of the wi fit, opinions on various exercises/games, and maybe even their personal records. Maybe we could even find exercise partners! I have found keeping fit a real problem, and go through fads. I hope this can help. David
  4. Gingertop

    Lubricating a suction liner

    [ The spray isn't cheap, if memory serves it costs around £50 a bottle but one bottle lasts a lot longer for me than donning sleeves which cost a lot more. So cost shouldn't be a problem when compared to other forms of socket suspension. The two products I am talking about seem to be 1 a spray of alhohol and water 2 a Glycerin based 'lotion' If the NHS is paying a lot for these then I think I'm going to start making them up and selling them! Lets try and find out what they cost.
  5. Gingertop

    Lubricating a suction liner

    Whisky, Gin, or will lager do?
  6. I used to use vaseline ( petroleum jelly) to lubricate the suction ring on my Iceross liner. My prosthetist gave me Ottoblock pro comfort gel (probably just glycerinre ?) and a spray of Iceross lubricant. Both of these seem better lubricants and less 'sticky' than vaseline. They really help you get right down into the socket straight away whereas in the past it took a an hour or so in the morning before I felt comfortable. My prosthetist is a bit cagey giving these out and I suspect they cost the NHS a fortune. Is there a good cheap alternative which won't damage the liner.
  7. Gingertop

    Disability Living Form - UK

    OBL This is kind of where I came in. It shouldn't be (and technically isn't) up to the individual to decide this. Its a decision the state makes based on the decisions about the 'threshold' that the government makes. The current system and questions make it difficult even for the honest claimant (and I'm assuming for the sake of argument that we all are) to feel comfortable about the process. The good part is that it enables an individual's needs to be assessed not just their disabilities so two people with the similar medical conditions can receive different treatment. The downside of this is that it places a heavy responsibility with the claimant. Trust me I feel the weight of this responsibility. I'd be interested to hear some constructive ideas and OBL yours would be especially interesting on what the threshold and tests should be for DLA. At one end surely some people need to be supported by DLA or its equivalent - people say who need round the clock care? Once you accept that - as I do then there has to be a threshold and there have to be tests. What is fair and easy to administer and who should do it?
  8. Gingertop

    Disability Living Form - UK

    Thanks one blue leg. I understand your view, which I know is not uncommon. I think Lisa's reply is a very good response. I was trying, and still am to think of a way where the benefit can be structured so that wherever the goalposts are, ( and you, I, Lisa, the government, and Uncle Tom Cobbly would probably all have our different views about the threshold) the decision that is made can be fair, and seen to be fair, and doesn't depend on arbitary answers to unansweable questions, or left to individual morality. I'm a taxpayer and I want the money to go to the most needy, and it's in all our interests that this wonderful benefit doesn't fall into disrepute. I want a system, and a form where everyone can give honest answers with a clear conscience and if they qualify they get the help. I think at present someone can do that and be seen by some to be getting something they aren't entitled to - and that isn't fair. When I fill in my tax form I don't say "I've filled in the form, I'm entitled to tax relief, but I don't believe in it so I won't accept it and neither should anyone else". These are difficult and emotionally charged issues. Maybe because we all have such different needs and abilities it is always going to very loose. Am I trying to be too rational? David
  9. Gingertop

    Disability Living Form - UK

    Thanks for the reply Lisa. I'm sorry you are struggling with mobility, and I can only imagine the difficulty of appealing against these decisions. Did you get help to appeal, and was it good? What you describe is another pressure to 'hold on' to the benefit you get (which like you I gave up in part). I guess it is much easier to continue a benefit than to regain it. I worry too that a change of government wll bring another review and money saving changes. David
  10. Gingertop

    Disability Living Form - UK

    I have just filled in the UK Disability Living Allowance Form. I think this is the third one I have filled in over the years and it has got me frustrated, sometimes angry but now reflective. DLA is a wonderful and generous benefit and with millions receiving it some method has to be used to ensure it goes to those who need/deserve it. It is an difficult form for a number of reasons. Last time I filled it in I knew that one answer I gave would cost me (and my family) a lot of money. I had gained a bit of confidence and didn't really honestly need as much 'care' around the house. But you have to be very honest and moral to do this sometimes when you know that nobody will ever check if you can prepare a meal, or shower without help for example. As a determined and self reliant person which is what amputees have to be I think we overestimate our abilities. We don't like to admit we can't do things. Luckily the first time I filled in the form it was with an 'expert' who bluntly told me what I couldn't (at that stage) do. It hurt to hear it but she was right. Those questions are so hard. How far can you walk before you feel severe discomfort? In one way every step I ever take involves severe discomfort, but I could easily compare my discomfort with that of someone else and say compared to them what I sufffer isn't severe. Then there's the good day bad day thing. Some days I walk well, other days ( like the last 3 months) when I have sores on my stump its painful. Who knows what the next year will be like? And in what conditions? Today there is snow on the ground and it's icy and I am frightened to walk a step, but on level corridors in the hospital with a rail on the wall I can, on a good day walk pretty well. Do you need help after a fall?. How daft is that? Sometimes I get up easily and on other occasasions I am hurt, or my stump cramps up and spasms and I can't. Falling doesn't seem a good measure anyway. I remember when I used to ski that the good skiers fell more because they were on the edge all the while. If you walk badly and go slowly carefully and don't stretch your abilities you fall less but may be more needy than someone who is more ambitious and walks better but takes more risks and falls more. Need help putting on footwear?/ If I take my leg off and then put shoes on (I'm an ak) it's easy. If I'm in a shoe shop, or in a stranger's house and can't take my leg off then it can be a bit of a performance and I might need help - especially if I haven't got my shoe horn. Anyway maybe I have too much time on my hands and I'm over analysing things! Would anyone else like to add their rants and frustrations about the form? Does anyone need help answering the questions? (could we help each other by providing a 'knowledge base'?) Does anyone have a theory about what would be fair 'tests' to decide who is deserving of this benefit? I'd be interested in objective practical thoughts. David
  11. Gingertop

    seal in socker and liner for AK

    Shane I found your post very interesting. I've been meaning to post on this myself. I have found that the biggest hindrance to me leading a 'normal' life after a few years of being and AK amputee is simply the few inches of skin around the rim of the socket. I cut the liner to shape at the top to allow enough to fold over the socket - I haven't tried doubling. QUite quickly the fabric separates and I get cuts in the liner at the back (but better that the liner is cut than my skin). If I get soreness in the area I take a stump sock and stuff it down the back between the liner and socket and this takes away the sharpness of the rubbing. Its very inelegant though and sometimes falls out and emerges from the bottom of my trouser leg. I have thought of taking an old liner and sticking it round the socket rim in some way to get the effect you must get from doubling up the liner. Has anyone tried this? It also might help stop my trousers wearing out at the point I sit on the socket rim. I have very few problems of loss of suction with the single seal, particularly since rehab gave me some lubricant spray that I put on the seal and inside the socket. Its better than the vaseline I used to use (but probably costs the NHS a fortune). David
  12. I use the 'ultimate knee' from ortho Europe a conventional hydraulic yielding knee. I do ok and walk without sticks and am quite active playing golf and archery and getting about. My prosthetist has always said that an electronic knee would not help me and of course I couldn't get one on the health service I would have to pay. I saw my consultant recently and he suggested that a different knee might help my rehabilitation. Though both the consultant and prosthetist hedge their opinions with "it maybe", or "some people find" there does seem a little difference between them. I read another post on this site which made me wonder what people thought and wether if I funded it myself it would be worth doing (I'm not rich so this would be a big thing for me). I suppose if they are safer I might try and do more adventurous things without fear of falling which of course is in my mind now. But the other post suggests it would make walking less effort. What do you think?
  13. Gingertop

    Osseointegration

    Last week I was talking to my consultant and mentioned that the future for amputees might be osseointegration and out of the blue he said they were looking for volunteers to try out a new method (the name escapes me). I am 50s, 5 years amputee'd above knee, and in Birmingham England. I am a bit scared of being the first for something like this. And I've read the excellent post in this forum which has put me off. I mentioned it to my physio who was keen to read it. Trying to rationalise my response: I have an aesthetic problem about bits of metal sticking out of me. Another operation - haven't I been through enough? I was told 6 months off my feet- that's a long time especially now I'm reasonably mobile again and walk without sticks etc. After the 6 months lots of pain discomfort and hard work. Fear of damage to the bone in my stump if I fell or bumped the leg. On the plus side I have to say that the biggest restriction of my current socket and knee is not what I would have thought so much as just the agravation of the fit of the socket and soreness around groin. So does anyone have any idea what the 'new' method might be, if it is any good? Also other comments about plus and minus factors would be interesting David
  14. Gingertop

    One way to keep fit...

    I live near Birmingham (England) Management of the limb centre in Birmingham were keen to see if any patients would be interested in doing something like the Manchester thing in Birmingham. I was one of the few people who attended a meeting at which this was raised. A little time has passed but I am thinking of getting involved to see if there would be any interest in some sort of supported exercise/fitness group amongst users of the centre. I'm not sure what form that might or ought to take. I'd be interested in hearing from anyone from Manchester who could talk to me about the scheme (and any lessons to learn). I'd also like to hear from anyone around Birmingham who would be interested in getting involved as an organiser or participant. My interest is that I am becoming flabby and unfit but have found it difficult to use much of the gym equipment I've seen. I wish I had had some specific gym work designed by a specialist physio. from the beginning and access to some kind of initial hand holding on how to use equipment. Ideally I think the centre itself ought to have a proper gym which people could access during and after their limb fitting.
  15. Gingertop

    SWIMMING

    Hi. I promised to report back on facing up to my swimming challenge (with my 4 year old) I did it! I decided that rather than spend all week on holiday plucking up courage and doing it on the last day I would do it on day one and then enjoy swimming for the rest of the week. At first I swam in the hotel pool early in the morning and in the late afternoon when it wasn't so busy. When I go to the pool I notice every bit of cellulite, every sagging tit and every oversize belly on other people so I knew that people were looking (though I never saw anyone doing so) and I guess some of those who had dieted or exercised to prepare for their holidays looked at me and thought 'OK I'm carrying an extra pound or two but hey I'm better off than that guy'. Overcoming these things comes from within (aided by support from friends and loved ones and people like you who gave me support). I am proud of what I have achieved and I think that those who saw me tottering on my crutches to the waterside and shuffling on my bottom so I could help my four year old swim (without armbands for the first time) would respect me for it. Anybody who doesn't must lead a strange and sad life. On the downside I didn't swim in the sea. The beaches were too crowded and the logistics of 'crutching' to them or taking on and off all the paraphanalia of liners and prosthetics without sand gumming up the works or causing 'chafing' problems was too much hassle. I also need to think about how to continue swimming now I've started. I don't fancy crowded public pools. Thanks again for listening and for your support.
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