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Heather Mills - Amputee Forum

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  1. 2 points
    Hi Everyone, So sorry for the long lag in posting... I hope everyone is doing well and having a fantastic holiday season! Everything here is status quo -- Which is to say that things are getting better for Lauren every day. She continues to really adapt and figure things out on a daily basis using a combination of her feet and her mouth, and is slowly but surely becoming more independent. Her confidence is also improving on a daily basis. Lauren did quite well in school this semester, and it has been great having her home for the holiday break! With the incredibly warm weather that we've had in NY, she hasn't even had to abandon her flip flops -- Which, of course, makes life easier. She's been spending time with her friends and her sister, and is taking a very well deserved break. Things continue to go well on the dating front for her, which is such good news.... That unto itself has been an amazing help for her confidence and self worth. Just wanted to send a quick update. I hope everyone has a very happy, healthy new year, and we are definitely looking forward to coming to the next conference this coming year!
  2. 2 points
    Maybe carry a pair of thin slippers with you. They sell slippers that fold up for travel and such. When you slip off your shoes slip these on and who will know the difference. I also hope you become more comfortable with being an amputee. I embrace it because that is part of who I am now and I am still the same person I was before - just minus a foot. I find that if I am comfortable with it so are other people.
  3. 2 points
    Oooohhhh....the ever-frustrating question of shoes for amputees................. for a woman, that can be a major issue. I'll admit that not being able to wear cute shoes is the one aspect of being an amp that I've never fully adjusted to. (Of couse, I've had a major "show fetish" for most of my life, so that might have something to do with it.) Seriously, shoes will be a fairly major part of your life as an amputee. You'll want to work closely with whoever builds your prosthetics...there are some feet that allow for more variation in heel height (and therefore, shoe styles). Generally speaking, a lace-up shoe, or one with straps (either velcro or buckle) is easier to put on or take off, which might help in your situation of needing to remove shoes for being indoors. As for "disguising" a prosthetic foot, well, there are some foot shells that look more realistic than others, but sometimes that can be a cost issue. A nice pair of sox might be another option. There are also various cosmetic coverings for a prosthetic leg, and some of those can seem very realistic. However, your best "disguise" can be your own attitude. You're still new at this, but as you adjust and adapt to life with a prosthesis, you'll find that you'll begin to ignore that you have a prosthetic foot...and when you "carry on" as normal, that's how people will perceive you. I have literally been standing with my prosthesis fully on display, chatting with someone who does not realize that I'm minus a leg until someone else makes mention of it...and I don't wear any sort of covering on my "naked" prosthesis. It can take a while to reach that level of self-acceptance, but please know that it is possible. The more you learn to do with your new leg, the easier it will be to "forget" that leg. It will take some hard work, but you can do it!
  4. 2 points
    Hi desperatewalker! OK well let me start off by saying your not alone. With that you may draw the inference this means there is very very limited funds that centers draw upon for prosthetics and their ultimate provision. To be able to grasp what your issue is could you tell us your amputation type, how long have you been an amputee, what is your current provision, your level of mobility or capability and finally which DSC you attend . Off the bat I can tell you from personal experience that if you can demonstrate levels of capability, need and beneficial results from provision , the there are numerous limbs the NHS can provide to assist in helping you fulfill your potential. If you are ultimately looking for that shiny plug in kit lime the ex military lads get via the NHS then your likely to be wasting your time. Unfortunately there is a real two tier prosthetics provision system in our NHS where ex military ( using redirected public funds from the NHS - into a special funding scheme for ex military only) not only get fastracked access to NHS specialist center treatment but are also given exclusive access to prosthetic componentry that civilian users are not considered for and unable to be provided with. Disgusting and unfair YES of course it is- limb loss is traumatic and devastating regardless of how we end up with it. Many of us do not get the chance to choose a scenario where that risk is increased or demolished - ex military to some extent had the opportunity not to sign up and thus reduce their exposure to such risks - I'm sure most of us civies would love to of had a chance to do something to help avoid our limbloss. Anyway that's a whole nest of hornets for another post and day!!! So let me know about the things I mentioned and we'll take it from there- I'm sure I can help you see it from a rational perspective and realistic viewpoint. One last thing - being the NHS be prepared for the long haul and to jump through the proverbial hoops to get the stuff you need. Do you also have any underlying conditions that caused or contributed to your amputation or are you otherwise fit and well? Hope I've helped a bit and I'll do what I can to steer you in the right direction .
  5. 1 point
    Hi everyone, I just joined the group and am really impressed with how supportive and informative everyone is. I'm hoping that you can provide some insight into your experiences and help me make this crappy decision about what to do with my pesky ankle. Just as background, I was involved in a motorbike versus mini bus incident.....unfortunately the motorbike didn't win and neither did I. I broke my pelvis, femur, fingers and my right ankle was partially ripped off. There was an open dislocation of the ankle joint and my gracilis muscle and a skin graft was used as a muscle flap to try and reconstruct my foot. That was 3.5 years ago and obviously in that time I have undergone many surgeries, tried every type of pain killer, been through endless hours of physio and rehab and experienced the complete rainbow of emotions that comes with a major trauma injury and the eventual realization that its not going to get better (I'm sure you all understand what I mean). I could talk a lot about what I have been through, but it is all history and what I really need advice on is where I am physically at now, and how to make sure that I can get the best out of my future. I have been left with a not-so-gorgeous foot that I jokingly call my lawnmower foot (because it looks like it got stuck in a lawnmower), and while I couldn't care less about how it looks, I am bothered by pain and limited functionality. I have a limited range of movement in my ankle, but it is finally stable after my most recent surgery. I have been told by my surgeon that there are no other surgical options available to me - there is no point fusing my ankle because it is already stable and it probably wouldn't help my pain because there is clearly a lot of nerve damage. He said that because my ankle is stable, theoretically we just need to get my pain under control and has referred me to a pain specialist. He acknowledges that amputation is an option, but he is an orthopedic surgeon and is very much against the idea. So for the last few months I have been trialing different sorts of pain medication and been seeing a pain psychologist with very limited success. In my mind, I have been preparing to lose my foot for quite a long time and I am just making sure I go through all of the necessary steps to ensure that I have tried EVERYTHING and I wont have any regrets if I make the decision to have an elective BKA. MY PAIN LEVELS AND WHAT I CAN DO (with painkillers and with intermittent rest and elevation) I can walk on it for up to approximately a maximum of 3km per day before I turn into a weeping angry hot mess - that is a max of 3km TOTAL, including showers, bathroom, getting around the house and trying to go to work. And I sort of walk like Phoebe from that episode of Friends where she runs through Central Park with her arms waving about like a crazy woman. Realistically, I walked a total of 3km on Wednesday last week, and I was pretty limited in what I could do on Thursday because my ankle was so sore - but I can do it if I have to. When my foot is elevated I am really not in any pain at all. I could easily get away with no painkillers if I just stayed home and lay around all day. When I hobble short distances to the bathroom the pain is pretty minimal, but walking with no shoes is quite difficult because of the range of motion in my ankle and my clawed toes. I can wear sneakers and walk for a while with a pretty minimal limp. When my friends see me they scream with excitement because I can now walk into a room (slowly) without my crutches, its hard to explain why I would consider something like this. I have met a few people recently who had no idea that I have this injury because I was normally standing and sitting at a bar and I walked normally to the bathroom and to get a drink. At the end of the night they noticed I started limping and asked what was wrong with my leg. I can ride a bike with minimal pain for about 1 hour - most of the pain is associated with weight-bearing when I walk. After an hour of cycling the joint is getting pretty angry and my partner will probably have to help me walk back inside or carry me. I go to a weights/boxing circuit class several times a week and keep fit in the gym. I cant do many of the exercises in the circuit class, but I modify the exercises and do what I can to keep fit. I think regardless of whether I keep or lose the lawnmower foot, I need to be as physically and mentally as strong as possible. I am on this crazy rollercoaster where I wake up every morning and think "WOW, the pain isn't that bad, I could probably live with this, its finally turned a corner and I'm improving" and I feel hopeful, but then as the day progresses I just cant imagine living like this forever. Every morning I think WOW.......and every afternoon I feel crushed again - I feel this rollercoaster even though I know my foot isn't going to get better, and my best time in the morning will probably only get worse over time. I have been in immense pain and in a wheelchair and on crutches for 3.5 years - getting my body to a point where I can go for a walk every night is INCREDIBLE, it has been a long road and a lot of hard work to get here. I still want to cry with gratefulness every time I hold my partners hand and we walk along like a normal couple (because I don't have crutches anymore), and I cant explain how amazing it feels to go for a walk by myself, unassisted, independent - its just incredible. And although my foot hurts, its NOTHING compared to the agony of the combination of my injuries after my accident. I think the novelty of being in so much less pain and being so mobile after so long is making this decision so much harder. I just learnt how to walk again and now I want to chop my leg off?? Whaaaaaat????? I have read a lot of blogs, books, articles, seen a surgeon, spoken to amputees and tried to get as much information as I possibly can in order to ensure I make the best decision for me. have read lots of other FAQs that amputees have answered that talk about the actual operation and day to day living. Although I don't know what being amputee is like of course - I think I understand the general concerns and the risk that amputation wont give me a pain free life. Of course I worry about the usual things like getting to the bathroom in the middle of the night, swimming, sweating, surgery complications etc. But I think those issues are part of getting on with life and you just deal with them because you are an amputee and that is part of it. I'm worried that the combination of all of those issues will out-weigh the benefit of chopping off the stupid lawnmower foot. Funnily enough, I don't have any questions in my head about if I will still be able to do various activities. I am very clear that I have already lost my old foot. I know I wont run or snowboard again if I keep lawnmower foot. If I ever do that stuff again it will be through a lot of hard work and determination and probably with a prosthetic. But is living with a prosthetic worth being able to do that? Most other amputees that I have spoken to cant walk at all, or they have some sort of severe trauma/disease/deformity that really takes the decision out of their hands - but I can actually walk!! I think if I was 70 years old I would keep this foot and just take heaps of drugs to get through my day. But I am not, I am a healthy 34 year old female who loved the outdoors, running, snowboarding, dancing and LIVING. I hate taking painkillers. I hate that my partner does so much for me. Right now, if I could make the decision now it would be to amputate TOMORROW because I feel grateful that my injury was to my foot and not a spinal or brain injury - I have a second chance to remove my foot and get on with my life. My accident really taught me to be grateful for every day. At the moment I watch an ad on TV that shows an amputee running and I am so intensely ..... jealous?? I never thought I would be jealous of someone who has been through a horrible experience, but I really am. Just gut wrenchingly jealous every time I see the ad. I want that chance so badly. But maybe I should just be grateful I can walk with my own foot!!!! I guess I just wanted to know if there are any elective amputees out there who had to make this decision even though they could walk before the operation. I just have never spoken to anyone that had to make the decision to amputate even though they could walk with their own foot before the operation, and if they regretted it. How mobile were you?? Or any other considerations I should be aware of that they only now know because they have been through the operation? QUESTIONS: 1. If you could walk 3km in a day on a lot of painkillers, would you choose to keep your leg??? 2. With the benefit of hindsight based on what you know now about being an amputee, what level of pain and mobility would you put up with to keep your leg? 3. What would your pain score out of 10 be for you to keep your old leg? 4. What would you do??? Please feel free to be honest and say what you would do if you were in my position. I would never base my decision on what anyone else says they would do and I have been speaking to support groups, surgeons, amputees and anyone I can find who will talk to me for months....I'm gathering all the information that I can and will not base my decision on anyone's personal experiences or opinions. I am just curious what other people would do or have done. Sorry this is a long post - I just wanted to be clear about where I am at physically and why I am struggling with this decision mentally. Thanks for your responses. Aimz
  6. 1 point
    A friend of mine said I should write up an article with all the things I use to help me ride and something about myself tp put it in perspective and this is the result. I hope you find it useful and please feel free to either post or email me comments good or bad :) Enjoy. --------------------------------------------------- An Amputee and a Mountain Bike January 06 I had an operation on my ankle to lengthen every tendon to allow me to put my foot flat on the floor, this was a left over from a large accident I had in 1983 which left me as a RBK amputee and my left leg having loss of muscle and joint movement. After a second operation to treat the arthritis in the ankle and lots of physio it was time to sort my fitness out. I started at Redbridge Sport and Leisure Centre as the people where great and it was fully accessible, after 4 months I was talking to a friend at work about getting fit and he said “why not get a mountain bike, you love the countryside?” I laughed thinking to myself yea right like I could do that..... But it had started me thinking, perhaps I could, I used an exercise bike at the gym.....hmm maybe. I bought my mountain bike a month later with no idea what I was actually getting but luckily enough was steered very well by the shop I bought it from. The first ride wasn’t very interesting consisting of a ride up the road to the local park once around and back home (about 1.5 miles) I was tired out and very sore, but buzzing from the feeling of freedom. That ride immediately showed I needed to make some changes as the back of my knee where the socket had dug in was a nice red sore mess. I needed something to stop the need to bend the knee to much, lots of internet searching later this turned up. This helped massively and solved the problem almost totally although has it’s own drawbacks as we’ll see soon. I’d also been trying different ways of keeping my feet on the pedals especially the prosthetic one. I tried normal pedals...bad, toe clips which where ok till you needed to stop and get the tin leg out quick then I ended up on the floor then a suggestion from a mtb forum was to get some GOOD quality flat pedals and a pair of 5:10 Impact mtb boots. WOW what a difference, the soles of the 5:10’s are made from the same rubber as rock climbing shoes and they stick like a limpet, problem solved. For a good 3-4 months I was a happy bunny going further and further around the park then venturing to Hainault forest which had........HILLS, this is when you find out how unfit you are again after all that time on the flat. During this period I’d signed up and been chatting on a cycling forum (www.uk-mtb.com) and the guys on there had been and still are incredibly helpful and supportive, a group of them went every weekend to another nearby forest called Thorndon Country park and after lots of prodding and cajoling finally got me to join them. They kept to a much easier route than they normally did and also kept the pace down but boy oh boy was it hard work especially as it was deep winter and the mud was 6-8inches deep in places and I’d never been off the fire roads before. I didn’t do bad but it showed up two things. The first I still wasn’t anywhere near as fit as I thought I was and the swing crank once you get properly off-road was hitting every root and rock and making going extremely hard, also because of the way it works you lose power on that leg as well. I bowed out halfway round finding the going very hard but more due to being totally exhausted, finding my way back was interesting going the wrong way at one point and finding myself face to face with a 25 foot deep V gully covered in mud and roots, I cycled down then got off and proceeded to spend a good 10 minutes getting up the other side then sliding all the way back down in the mud and finally getting up by holding onto a fence and pulling myself and the bike up an inch at a time. By the time I got back to the car I was so past exhausted it wasn’t funny and covered head to toe in thick mud, but DAMN had I enjoyed myself or what. This was the start of a slippery slope I’m still on. The realisation dawned that I needed to take the swing crank off if I wanted to get off-road to any great extent so one afternoon took the bull by the horns, well my spare leg anyway and took a saw to it. I cut it 4 inches shorter and also cut out the back of the socket with a Dremel to allow the knee to bend further and the various tendons in the area to work unhindered. It was amazing, so much more comfortable and quite a bit more power as well. This was what I ended up with Needless to say my prosthetist Laura was none to happy and I got a good tongue lashing, but now months down the line the legs been lengthened back to normal with some other tweaks being made and we’re both happy The next month was great fun out and about all the time in the mud and rain but two big issues I still had where getting up hills and getting off the bike. Hills, the problems here is power and the ability to stand and pedal. With the pedals in the 6/12 position the only way to move forward is to push with one knee and pull with the other till the pedals are in 1/7 then you put your weight into it. For a BK it’s very hard to do this and for an AK impossible on one side so on anything slightly steep I would just run out of steam without the ability to stand and power up the last section. Off I go back to the internet hunting for a solution and finally found the Rotor. This is geared so the power pedal is always in the 1 position when the other pedal is at 6, this allows you to always be putting power into a stroke. After this was fitted the difference was amazing, I could now get up hills I previously walked and could stand and pedal for short periods allowing me to get over tough obstacles. In all honesty this one item has made more difference to my cycling than anything else and is the one thing I would NOT give up even if I had to give everything else away. Ok, getting off and on the bike how hard is that? Well on the road or in the park it’s not, but once you start getting to do off-road area’s no matter easy they look it becomes a problem. If you have the seat adjusted as it should be it’s quite hard for an amputee as you can’t point the toes on the prosthetic leg to keep in contact with the pedals, this gets really stupid if you on an off camber slope. I mentioned this on the uk-mtb forum and said wouldn’t it be great if someone made a seat post that went up and down so I could click a button before stopping and the seat would drop. The immediate responce was “have you looked at the Gravity Dropper?” Well blow me down its exactly what the doctor ordered. Short time later it was installed, solved the problem totally and has been superb ever since. Roll forward 6-8 months and I’m out 2-4 times a week doing things I’d never have thought I could of over distances I could of only dreamed about and loving every damn minute of it, well apart from the huge muddy puddles full of horse poo, as it tastes awful. Now before I end with a list of all the bits I’ve found useful I’d like to thank a few special people who’ve helped me greatly. Trent, for always pushing me but knowing when not to Luke and Tony at Triton Cycles (http://www.tritoncycles.co.uk/), for putting up with my constant upgrades and being a really great couple of blokes always willing to help www.uk-mtb.com, to many people to mention who all helped me get going with support, suggestions and endless patience with my noobie questions Laura, my prosthetist who’s always patient, understanding and doesn’t mind trying something a little different. Hope you found this useful and please if you have any comments or suggestions drop me an email rikk@golum.co.uk ............Rikk Flat Pedals Something like these that are large and have a lot of pins to dig into the sole. 5:10 Impacts http://www.stif.co.uk/shop/mb_software_pro...ten&cat=211 http://www.fiveten.com/ Swing Crank http://www.highpath.co.uk/cycles/special/index.html Rotor UK Supplier http://www.velotechservices.co.uk/rotors.htm Manufacturer (lot more info here) http://www.rotorbike.com/2006/rotorgen.htm Gravity Dropper http://www.gravitydropper.com/ Pump Having to pump a tyre up on the trail can be a pain as we’re not very good at crouching so take a peek at this pump :- You basically stand on it and pull the rope handle like starting an outboard motor, pumps very quickly and no need to crouch or sit on the floor as you’d do with a normal mini pump  http://www.cyclaire.com/bikepump.html Ergon Grips The grips they do are fantastic for stopping numbness and tingling in the hands/fingers and as most of us use either crutches or a stick at times it affects us more. http://www.ergon-bike.com/en/grips/index.html Lifeventure Towels These little things are superb, pack down really tiny but absorb so much sweat and dry out in no time at all. I always carry one on the bike and stop for a dry off every 40-60 mins and finds it helps massively. You can pick these up in most hiking/outdoors shops like Milletts. http://www.lifeventure.co.uk/htm/washgear/...ibre-towels.htm X-Static Liner Liner These are liners that go in between your stump and the normal silicon liner, they soak up sweat and stop rashes/infections/smells due to the sweat. I used to stop every 30-60 mins depending how hot it was to dry off, now most of the time using these I either don’t stop or at most have one change halfway through. They are so much more comfortable and my stump dosn’t look like you fingers do when they have been in the bath for an hour anymore  Apart from the Rotor these have made the biggest impact on my cycling since I got them recently. http://www.kingsleymfg.com/KMFGStore/Catal...mp;advmode=True UK Supplier. CHANECO® Chris Hanley & Partners 4 Kilvey Road Brackmills Northampton, NN4 7BQ United Kingdom Tel: 01604-709999 Fax: 01604-700057 Dermasalve Great general purpose cream for the end of the day, very refreshing and soothing. http://www.pharmacy2u.co.uk/ Sheabutter This stuff is the dogs and I’ve not found any better moisturizer, a friend’s wife told me about this as it’s the base ingredient in every expensive moisturizer but unrefined it’s all natural with nothing extra. The stuff lasts for ages, a must try and even if you don’t like it give it to the wife she’ll love it  http://www.sheabuttercottage.co.uk/ Bodyglide This is a lubricant/protectorant for the body, idea is you get a sore spot/blister you pop this on and it stops the chaffing in the area, not had a chance to try it as since moving to suspension liners I’ve not had any. http://www.wiggle.co.uk/ProductSearchAdvan...e&cat=cycle Adaptskin Only just started trying this. Specifically for amputees, check the site out. https://www.adaptlabs.com/adaptskin.htm And lastly for anyone who’s interested my injuries where :- Left tib/fib compound fracture Left Femur compound fracture Left hip 1/3 of ball broken off 30% muscle loss on left side due to injuries Right below knee amp Right femur fractured Punctured lung For 20+ years I’d been walking on tip toe due to the muscles and tendons in my left foot shrinking till the operation mentioned at the start.
  7. 1 point
    I was looking through on your website and came across your contact info. I read that because of so many letter's and short staff that not all letter's would be read. But I decided to go a head and write a letter to you anyways, and it would be self healing for myself since my amputation was so tramatic. I was so surprised when I received an email and a phone call from one of your people. I never thought this would happen. It was very heart warming to know that someone does care about the pain I am living everyday. For the first time in almost 3 years I feel that there is hope for me and that I might be able to get my life back again!! It's been a very difficult few years for me, but I now have hope!! Thank you so much for everything you do for people, and for your website because without it I wouldn't have learned the things I have or to have been able to talk to people, even becoming friends with some. It is very much appreciated! Mary Farquhar
  8. 1 point
    Hi Everyone, I hope you're all doing great! Just a quick update here to let everyone know that Lauren is continuing to do very well. She's home from college now for the summer of course, and it's been great having her back! She has definitely been relaxing, and has been keeping busy seeing her friends, hanging with her sister, and even taking some fitness and yoga classes. It's amazing to see her really resume the life she lead before the amputations. Things definitely have to be done differently, and often take more time and require help, but she's living - Rather than crying and feeling sorry for herself all the time. There are still definitely down moments, but it's been a remarkeable shift in Lauren's outlook, and I am proud beyond words at how well she's adjusting. Her legs and feet really do most of the work, and her flexibility has gotten even better - I guess that's one perk of being so athletic even before the accident! Lauren also has been using voice activation technology, as well as a mouthstick, to use the computer and iPad. She continues to wear her cosmetic arms when she goes out to nice restaurants and for special occasions, but now that it's getting so hot and sticky here in NY, she's been going without them more often - They get very heavy and uncomfortable for her. I hope everyone here is enjoying the summer - And I have a bunch of pictures that I'm going to download from my phone here in the next day or so that I'll post! All the best, Marion
  9. 1 point
    Hi All, I trust you're all doing well! I know it has been such a long time since I have posted here - It's been crazy! Lots happening on the family and work fronts, and things are now just starting to settle down. Lauren is continuing to make progress and is doing very well, especially as she's starting to wrap up the semester at school. She has really continued to adapt and find new, innovative ways to regain her independence. It isn't always easy, of course, but I think she's found that she can do so many of the things she did before - albeit differently. Her progress continues to inspire everyone who interacts with her. I know this is a short update, but I will make an effort to post more frequently again. With all the best wishes, Marion
  10. 1 point
    Just a very quick update.. Things are moving along.. I have a date for my elective, below knee amputation - May 20th 2016.. I'm looking forward to it.. I'm so sick of the pain that I'm in that I'd happily have the surgery tomorrow if I could but in the UK things move slowly. So I'm all set.. I have my wheelchair, I've met and spoken with my rehab team; consultant, head nurse, physiotherapist and occupational therapist, I had my pre-op assessment last week and now I just have one more appointment with my surgeon on May 4th to sign my consent form and to go over any final details. I'm most dreading the anaesthetic as I've been ill for days after previous GAs.. A friend of mine who I know through an amputee FB group has just had his surgery done with nerve blocks alone, he was awake throughout and said it was surreal but much better to recover from than his previous surgeries where he was asleep so I'm hoping they may do that for me.. So 6 weeks to go..
  11. 1 point
    I gather that a good number of our members have migrated over to Facebook groups...Facebood may yet take over the world. But we do have folks checking in here, mostly to make sure that new posters fat a "welcome." I'm just an old-fashioned gal who is not a Facebook fan......so here I am!
  12. 1 point
    Hi, Jamie, and welcome to our little group! I'm an elective below-knee amputee and lost my leg after several attempts to repair an odd fracture in my left foot. It turned out to be a good choice for me...but I will say that I had to learn to be very flexible when it came to just how long my recovery ended up taking. Granted, I was not 21 (it was more like 50), so that made a difference....but if you do go ahead with the amputation, please try to get yourself in a mental/emotional state where you can adapt if you're not able to recover quickly enough to carry on with your schooling uninterrupted. Three months can be enough to get back some general degree of mobility...but as you probably know from previous surgeries, a major operation is a major assault on your body, and you may or may not be in a position to recover quickly. I'd suggest doing all you can in advance to get and keep yourself in good physical condition. I'd also do everything possible to plan with your medical and prosthetic team to "aim for" a speedy recovery. But know that all the planning and preparation in the world might not be enough. I know that sounds like a pessimistic point of view, but I don't mean it that way...I just want you to know that healing happens on individual timelines and that you shouldn't let it get you down if your healing takes a more leisurely path. It's not unusual for it to take up to a full year before feeling fully recovered from an amputation. So just know that if you do have to take a longer time for recovery, it is not a reflection on you as a person. You'll get where you want to be, even if it does take more than three months. Good luck to you with this decision!
  13. 1 point
    Hi Standing Tall, I am also a NHS prosthetic user, though do not live in Scotland. Am not sure whether I have met another prosthetic user with CP, but have met some with other conditions, though am hearing more and more about constraints on NHS prosthetic usage and people having to set up Trust Funds, which really concerns me. In England, Prosthetics is now a specialist service commissioned by NHS England, so if you were there, they would be the people to talk to, I imagine you have their equivalent in Scotland. Would also suggest, if you haven't done already, to contact the LA (Limbless Association) http://www.limbless-association.org/and ask them for their support as an amputee living in Scotland, also perhaps your MP, media, anyone really who may be able to help. There are quite a few UK amputee support groups on FB, some are closed groups and very supportive. Also you may have amputee user groups in your local area, though these are usually set up via prosthetic centres, so not sure if you have accessed any of these. Generally,would say that the larger prosthetic centres often have greater resources, more collective experience that might help you better, you'd need to get referred, either by your GP or rehab consultant, if you have one, but may need to go out of your area and my experience is that you sometimes have to push and keep pushing to get the resources you need. Good luck and although you don't say how your CP affects you, you sound like you really want to try a prosthesis, so do hope you get a chance to do this.
  14. 1 point
    Hi, StandingTall, and welcome! I'm a below-knee amp myself, and I have no first-hand experience with CP, so I'm doing a bit of speculating here...but DO push as hard as possible for a prosthesis. I do have a good friend who has dealt with CP all her life, and looking at her concerns and condition, the one thing I'm fairly sure of is that she would want to be able to have the option of a second leg to use when transferring from place to place. My friend's condition has deteriorated to the point that she's close to fully wheelchair bound at this point, but she still uses every possible assistive device to allow her to live independently. My own opinion: if a person with a disability can continue to be self-sufficient by using some type of assistive device, then let them! It's a benefit to society as a whole to have people functioning at their best. Good luck in your quest!
  15. 1 point
    thanks for your encouragement. yes, I feel I have the right to at least try and mobilise with a prothesis. However, I do appreciate that having CP will complicate things, if I am going down, I want to go down fighting. Our national health service here in Scotland is free but if you don't meet the list of criteria, you won't be considered for a prothesis. To go private is too costly for us, we can't afford it, unless I was to set up a trust fund and start fundraising. But I am very lucky in a sense as after the op, my pain was down by at least 85%, my meds were reduced by two thirds and I rarely am bothered with phantom pains. I have a strong faith basis, which helped me and my husband thru the worst. Basically we were told in the spring of last year that if I didn't have the op sooner rather than later, the ongoing infection could get into my body and prove fatal. 6 weeks later I had the op. It ended up with me being an AKA left leg but the would healed perfectly and no signs of any further infection. Sorry for going on like this but it's the first website I've found where others understand what I'm going thru. Take care and God bless, Lillian Ann
  16. 1 point
    Hi Please tell everyone you know about the new beginner's cycling book for amputees coming out soon. Visit www.stumpsandcranks.co.uk to register your interest. It really is the best fun on less than four wheels that you could ever have! Thanks...
  17. 1 point
    Hi Friends Old and New! Been away for too long but had to share this with you all. When the hot weather comes I like many of you suffer from a sweaty stump, last week my chiropodist gave me a tip, been doing it ever since and it works no more sweaty stumps! He told me to try Witch hazel a natural product applied with a cotton pad, don't ask me ehy or how it works but it does may also help swelling and itching. http://en.wikipedia.org/wiki/Witch-hazel Take care all of you Neil x
  18. 1 point
    It's much, much better on the foot front, Tammie...and very strange on the prosthesis side of things! My foot wound has totally healed and I was back up and walking again. Then........I was asked to be the BK "fit model" for a seminar by Otto Bock demonstrating how to cast and fit for the Harmony elevated-vacuum system. It was a fascinating experience, and I wound up with a test socket by the end of the day. I was thrilled! Then....well....we took the test socket from the seminar and set me up with a full trial leg. It's been a love/hate relationship ever since! I love, love, love the stability of the leg and the feeling of having a fully natural stride again. I HATE the fact that I'm getting a LOT of skin breakdown! The Otto Bock guys have been called in to advise on revisions, and they think the problem is in the liner, since I'm not a "clear" standard size. Next step is to try a custom liner and see if that will stop the leg from trying to eat me alive. In the meantime, I'm currently out of all prosthetic devices and back in the wheelchair until things heal up on the stump. I really and truly hope and pray that they'll be able to adjust things so that I can go on using this leg...even with it trying to eat me alive, there's a lot to love about this leg. Sooooo....wish me luck, gang!
  19. 1 point
    You all deserve one as well for all the work you do in the background to make this forum work for all of us...We do appreciate it!
  20. 1 point
    What Ann says makes sense. Tell your legman you want to try different systems. If he is unwilling to do this, try another legman. It is your longterm comfort and health that is important here. He can make suggestions, but only you know what works best. I don't have a skin graft, but cannot wear the pin system because of the pulling on the end of the stump. I've never used the Harmony system, but have used a vacuum system. I liked the way it made the leg feel like it was really part of me, but I didn't like the way it kept it's tight fit while sitting. It all boils down to the fact that no one system is good for all of us. I've been using Ossur's Seal-in X5 liner for the past 4 years and love it. It has the convenience of a pin system without the pulling and yet the snug fit I like as in the vacuum without that tight fit of a vacuum. It works quite well for me.
  21. 1 point
    I have a Comfort Flex socket as a LAK. I use a more firmer plastic that still is flexable but not flimsey. Also, I pull my stump into the socket using the parachute material. There is no liner as my skin is tight against the plastic socket which fits inside the frame. No problems at this time.
  22. 1 point
    Hi there, I am myself a hip disartic and live in Australia. I have done quite a lot of searching for information in relation to legs. I have a young prosthetist who is willing to try different things. I have had one leg which did not work so well for me as it did not have padding in places where I needed it. I visited a prothetist in the US who works with Iraqi vet who have lost limbs and he uses body armor pants with gel bonded inside to give greater comfort. I know a couple of other disartic men who don't have those kinds of issues but they have been amp for many many years! I need comfort. I will get the leg on 5th Nov and am happy to send photos. My prothetist will be happy to share what he is doing. It has been a learning eperience for him! We use a socket that hugs your buttock and hooks over your hip bone. It does not go over to the other side as the old ones used to. He either used a velcor belt system or a ratchet (like the kind you get on a skate boot). I like the ratchet as once tight it does not move. Ask me questions and I will see if I can help. Good luck Linda .
  23. 1 point
    I've updated the article massively, have a peek here and let me know what you all think.. http://91.151.214.107/viewtopic.php?f=38&t=10729
  24. 1 point
    Going to update the article soon as lots of stuff has changed so more advice to give, but on a different tack I treated myself to a helmet camera so here's a little video of me and friend at thetford forest. Enjoy :) http://rikk.smugmug.com/gallery/2860915_HL...4118_UinSV-A-LB
  25. 1 point
    Susan, when I get a rash like you are describing, I have used a Benedryle (?) cream, or the aloe gel version on it. Either one.. The cream is going to give you some "slip" if it's a new liner, and the gel won't.. Also, the local CVS pharmacy carries the same things in the generic brand too, and they work just as well. I get a rash at the top of a new liner, every time, and have found that the aloe version works really well for the itching and the rash will heal in no time. You might try something like that.....I hope it heals soon, those things can drive you crazy.
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