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Heather Mills - Amputee Forum

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  1. 5 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 .
  2. 5 points
    Hi Everyone, Really sorry for the long delay in getting the forum back up and running but it should be back for good now with proper monthly updates. The reason for the forum being down for so long is the constant hacking of the forum that was causing huge issues for the server. As of now, we will be doing regular security patches and updates to keep it up and running. The first proper upgrade will be on Monday but it will only be down for around 30-60 minutes. If we need to run any other updates in future that will mean down time we'll give you all a few days notice right here. We'd just like to give a quick nod to Johnny V for his constant support and passion for the forum. It wouldn't be here without him. Many thanks again and thanks for your patience.
  3. 5 points
    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!
  4. 5 points
    Just to explain a bit Disability Living Allowance isn't a benefit as such to replace earnings, its an allowance, graded to the disability, to help with the extra cost of living with that disability and help keep people independent. Its not enough to live on, but helps financially with support for people who can't walk very far or can't cook their own meals, or have learning disability or whatever, and it is given to people who are working also, and has been in place in the UK since the 1970's. Certain conditions including those who had two limbs or more missing were automatically given the higher rate mobility component, single amputees or other conditions were assessed and granted on need. The reforms are changing things and DLA is being replaced by PIP. I think what has upset a lot of people is not that the veterans shouldn't get what they are getting , most of us fully support them. Its more really the way civilian amputees are being treated and thought of, and this week there seemed to be almost a media attack on us. On Tuesday, a Government Minister said that using a prosthetic limb did not undermine mobilty and that many amputees would no longer be entitled to DLA, this was followed by an announcement from the PM that Veteran amputees would receive DLA or the new PIP automatically for life. What came across was that civilians didn't need it, but veterans did. This is happening against the background of what Lizzie2 is saying about civilian amps struggling with the services they receive, lack of employment opps, and also of course the general cuts that are happening throughout the country for everyone. The problem is that most of our gov ministers and probably the general public are quite misinformed over the situation and most don't realize the situation for civilian amps., unless they personally know someone and the media talks constantly about the 'technology' that allows amputees to do virtually anything, going alongside media clips of veterans who are doing amazing things on their prosthetics, and everyone seems to assume that civilian amps are able to achieve these levels too. However there are differences in levels of care here, the veterans are given a long period of inpatient specialist rehab, and high spec tech limbs ... which I know doesn't necessarily 'fix' everything, but for the main their care is streamlined, quick access to things that don't leave them waiting weeks or months for appointments, new sockets, components, etc., which is often the case for civilians, and this all helps to allow them reach their full potential and be very active, making it much easier for them to live independent lives and obtain employment .... nothing wrong in this, in fact this is how things used to be in a way for civilians but not always the case now and some, particularly complex amps, have to fight long and hard to get the kind of input they need because really the system has got very overloaded, there are many more amputees nowadays, which is good because people are often surviving things they didn't previously, but the resources haven't increased to meet this demand and I think our NHS system is struggling a bit to cope. I know its all political and media spin but to me it does seem a bit unjust.
  5. 4 points
    I to would like to wish every one a happy Christmas and a healthy new year , but most of all I would like to thank the mods and the few regular posters that still take the time to read and reply to anyone who posts on here , without them this forum would slowly disappear into cyberspace or where ever they go , I know face book seems to be taking over but being of the older generation I am not really happy over there............. so once again big thanks all and have a great Christmas Take care all …….Mick
  6. 4 points
    Nice to be back. Just received the e-mail
  7. 4 points
    Just want to say hello and pleased we are back up and running .
  8. 4 points
    Hooray!! I've missed this place! Three cheers for everyone who worked to bring the site back to life!
  9. 3 points
    Higgy, I spent the entire six weeks computer-less this last time! Drove me batty! My other stays in rehab, there's been at least one computer available for patients...when I asked at this one, though, their response was "No...but we have free wi-fi." I guess it's time for me to get myself a tablet or laptop...my desktop home computer does me no good at all when trapped at a place with free wi-fi............. With a little luck, this new surgery will only keep me out of circulation for a couple of days...at present, I'm scheduled to stay overnight, but there's a chance that, if the surgery goes spectacularly well, they could discharge me the same day. They already know I can meet all their physical therapy goals, since I just met them during my six weeks in rehab. Heaven knows I'd much rather be at at home! I'd appreciate some good vibes sent my way on Tuesday morning!
  10. 3 points
    The last time I was in the local hospital for a small surgery, the LPN came in early one morning wanting to give me my insulin injection before breakfast.... At least an hour and 15 minutes before breakfast. It is fast acting insulin. I argued and refused the injection, no matter what she said, until my breakfast tray was in front of me. I was released that day, and the more I thought about it, afterward the more bugged I was. I'm a big enough loud mouth to make a point.. but what if I were an unsuspecting senior who wouldn't stand up for themselves, being afraid to say no..Well, about a week after I got home, I ended up calling and asking for the director of nursing. I then explained that what would of happened to someone, myself included, if I had taken fast acting insulin with nothing to eat. That maybe they should train the nurses better if they think they aren't understanding just what happens when giving fast acting insulin with no food. I don't blame you a bit for writing a letter and letting the powers that be know what had happened. Stick to your guns girl! I hope all goes well for you in the days ahead.. Will you have a way to stay online?
  11. 3 points
    Hi Cheryl, You should definitely report the incident. It would be doing the facility a favor as people like this give the hospital a bad reputation. At the very least she needs further training in how to treat patients with respect and closer supervision for a time. She most likely is not suited to this type of work and the sooner she is made aware of it the better for everyone. I would write down exactly what happened and hand deliver it, if possible, to the Director of Nursing. What happened is totally inexcusable and inappropriate. Do all future patients a favor and report her.
  12. 3 points
    Sorry to hear about your ongoing problems Cheryl and I wish you all the best for your forthcoming surgery. Yes, it's a pain, but as you say, better than losing part of your foot... I honestly don't think you're overreacting (sp?) about your alarming experience - I'd be fuming too!The woman showed not only extreme ignorance, but her insensitivity is unacceptable for someone in her position. I'm sure that her 'boss' ( I think here in the UK it would be the Sister-in-Charge) would want to know about the incident. As you so rightly point out, there are other patients who may not be as alert and assertive as yourself who will also have to experience her bizarre and unorthodox practices! There are so many people who are unemployed who would LOVE a job like hers, and if she doesn't like her work I'm sure there are plenty of competent, sensitive and professional women who would gladly do it for her. You can always temper your complaint by praising those areas of care which you found to be excellent. Good luck and do let us know what you decide to do - and what the response is. And keep us posted about your surgery too!
  13. 3 points
    I hesitate to say this, because it's going to both frustrate you and sound like a "cop out," but the "best prosthetist" is the one who can fit you properly...it can change radically from person to person. Now, that said, there are some questions you can ask and some research you can do to try and improve your chances of meeting up with that "best prosthetist." When you're meeting a prospective prosthetist, have you asked them about their education and experience? They really should be a certified prosthetist, they should be doing continuing education to keep up to date with current developments in the industry, and they should have a significant amount of experience successfully fitting people like you — same type and level of amp, similar activity levels, same physical condition, etc... They should also be willing to explain what, how, and why they are doing what they're doing in the construction of your leg and how it will benefit you. For example, they should be ready and willing to tell you why they are "reluctant" to put you into anything other than a pin-lock system. (It could be as simple as the fact that a pin-lock is extremely unlikely to fall off under high activity...or you could still be shrinking, odd as that would be after four years, and a pin-lock is more forgiving with a changing limb. What ever it is, you should be able to get an explanation that makes sense to you.) If you've done all of that and it still seems like they are being forthright with you, then you may have to look at how you are approaching your fittings. Can you explain to them, clearly and in great detail, exactly how your prosthesis is painful and under what circumstances it hurts? Can you point out the painful spots? Does it hurt constantly, or only when doing a certain activity? Does it hurt when you sit? When you're standing still? Only if you're walking up or down an incline? When you're biking? The more specific and "picky" you can be, they more clues you provide for them to try and fix the issue. I once got really fed up with going to prosthesis fittings (I was still shrinking rapidly and I was going through a LOT of fittings), along with a number of other issues, and I just basically gave up and sat like a bump on a log with a sort of "YOU'RE the professional...YOU make it work for me" attitude. The result was the worst-fitting leg I've ever had. After several more visits attempting to "fix" the leg, again with next-to-no input from me, the technician got frustrated enough to demand, "What's UP with you, anyway? WHY aren't you talking to me?" And once I did start talking, we were able to work out a fix for the leg. That "two hours on/two hours off" break-in routine actually is a good idea if the socket construction is truly radically different from your past legs...the "crappy used foot" sounds like it's just a lousy (and I hope a temporary) compromise...could the foot be part of the pain issue? If you can even "practice" explaining your pain situation to us here, perhaps someone will have either a solution or be able to suggest ways to better communicate the situation. Do hang in there...you deserve to have a leg that can stand up to your activity level!
  14. 3 points
    I don't know about anyone else, {BUT} I just love Christmas., all the decorations, cantatas, food and of course we can't forget the Drink. But just look into the kids eyes {sparkle & dancing} why even the adults are acting much more civilized. There is actually love in the air {sometime}. Just want to wish each and everyone of you the most blessed & healthy Christmas & New Year you have ever had. ann
  15. 3 points
    Let's see...I'm upright, I'm walking, I have a lovely prosthesis that fits like a dream, and I have a ticket for what sounds like it's going to be a lovely and rather elegant New Year's Eve gathering..........May 2014 continue in this vein for all of us! Happy New Year, gang!
  16. 3 points
    Hi there Mike and welcome to our little corner of the world. For those of us in the USA, we're just coming off a long holiday weekend, so that might account for the lack of replies on this end...don't know what's got our Brits distracted, but I'm sure you'll start getting some responses soon. I'm an elective left below-knee amp myself. Have been for almost nine years, now...suffered a bad break in my left foot that kept breaking down every time they thought they'd gotten a repair and good healing. Yeah, the pain was not fun, and eventually the foot broke down one time too many and I developed a MRSA infection. After that got cleared up, I was offered a choice kind of like yours: re-try the longest-lasting of the previous repair attempts and keep me in a cast for many, many more months than what is considered "usual," or do the LBK amputation. It took me only about an hour to decide that I needed to lose my foot in order to reclaim my life. For what it's worth, I've never regretted that decision. It sounds to me like having a plastic surgeon involved might be a good thing, considering the extent of your previous injuries. My own amp was done by an Ortho, but I didn't have major issues at the site of my surgery. I've heard good things about Plastics and creating a limb that will be good for walking with a prosthesis. Do try to educate your self as much as possible about what you're going to be facing. Don't be afraid to ask questions of your doctors, ask to meet with a prosthetist, and, if at all possible, see if you can meet some other BK amps...just seeing how others get about and being able to get their input on "how to get on with life" can be a tremendous reassurance. And post any questions that come up here as well...when you're facing such a drastic change in your life, there is absolutely no such thing as a "stupid question." You're young and you deserve to be able to be active and enjoy your kids...and for your "basic BK amp," that's a real, attainable goal. Hang in there...you'll manage it!
  17. 3 points
    Hey...the gang's getting back together! Good to hear from everyone!
  18. 3 points
    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. 3 points
    I hope your fittings go well...... I always loose patience with the time thing.......Ideally, it would fit right with the first try on....
  20. 3 points
    Ajax is too harsh. I use body soap when I take my shower.
  21. 3 points
    My heart goes out to every person on these forums who is struggling. I'm so thankful this forum exists, so we can all find help from people who understand. When I was doing my pre-surgery research back in 2003 (when the internet was pretty slim on information!) I could never find a book about an every day amputee, not the super athlete amputee, but a person who lived with a prosthetic in real life. Once I had my surgery, and it went well, I decided there needed to be a book out there for all of us who will never run in the Paralympics or climb a mountain. I'm a writer, by trade, so I dove in. My book, called "Just One Foot: How Amputation Cured My Disability." is now available, along with it's website, at justonefoot.com I'm trying my best to get a flier about the book (and some day a copy of the book) in every prosthetist office, and every orthopedic hospital waiting room. I want those considering this option to know they are not alone and that life can be very good afterward. Every time I get a tiny bit of proceeds from the book sales, I go buy postage, to send the word out to others who might need it. I hope to also speak to the orthopedic resident doctors at the med school here in Denver, to let them know that amputation doesn't always mean failure. Sometimes it can mean a better life...better than years of surgery and more crutches and pain pills. I hope to get a new generation of docs thinking in a new way - more about what is best for the patient, when a limb refuses to heal. Sometimes amputation means they can go on with their lives and be more active than they were before. I was so encouraged and supported by this forum when I was doing my research. I wanted you all to know it was very appreciated and that I'm trying to give back, by getting this 'everyday amputee' book out there. Thanks again!
  22. 3 points
    I know that I am probably posting this "out of the blue", but briefly, I have never have funds to walk well. This year I faced the daunting task of never walking again. That broke 3R60? Remember? Anyway, Ed Dean sent me a knee that was such a life saver at the beginning of this year.......and such a blessing...... This is my story....from after receiving my knee from Ed.....until my conniving CP and Ed put their heads together and turned my whole world upside down. Wednesday 25 July 2012 - A very special day in the life of an ordinary RAK amputee from Africa I think it was round about the middle of July maybe, when Marco (my legman) gave me a call and asked for a favour. He had a group of student prosthetists coming to his practice and he needed a body to use to show them how to build and fit a test socket. Test sockets. My favourite thing, sigh. But for Marco, anything. I'm normally quite good at self motivation.......stuff like, well, how bad can it be? I've done it a hundred times before. I'm not walking so badly on this 3R60 that Ed Dean sent me. In fact, I'm doing quite well considering that the knee is built for someone almost twice my weight. I'm lucky to be walking at all. There's a click in my foot, Marco can fix it for me. I need to get off this farm and see real people. I don't hate the fitting, and pinching, and tweaking, and donning, and "ow" here, and "ow" there. Marco standing behind me like a sergeant major yelling "walk walk!" Nah. Not so bad. Dawns the morning of Wednesday 25 July, and I am ready to go. Dressed as only a seasoned AK amp can be for a fitting. Girlie brooks, passion killer brooks, boy short brooks, short shorts, long shorts, and finally tracksuit pants. Yip, as ready as I am ever going to be. And I hie off to Pretoria, a goodly one-hour-and-a-bit drive. And I arrive in Pretoria, well on time (I'm usually late) and then I realise that I must have taken the wrong off-ramp. Every single street name is foreign. And when I say foreign, I mean foreign to a white South African chick. They are all black and ethnic names! No man. Names I can't even pronounce! I drive straight (which I always do when I am lost) and then pull over about 25 kilometres down the road to find out where I am, and what they've done with Marco's offramp. Is it even called Pretoria now? Maybe it's Tswane..... Ja, ja, I get the "oh didn't you know?", and the "but all the street names change all the time", and the "come back down for 25 kilometres and look for "January Maselela". Sigh - that is SO far removed from the original "General Louis Botha Drive" it's not even funny. So I'm late......but I get my coffee and walk into the rooms. Three people there, one with a camera (oh my hat, no man), and two with note pads (that I can handle). Yip, gonna be a long day. Marco smiles, thanks me for coming and introduces me to the three strange people in the room. And says "I have a confession to make....." I knew it! I just knew it! The b*gger told me that I wouldn't have to go through the whole plaster-of-paris rigmarole and now he is going to make me do it! Still smiling, he hands me a huge beautifully framed letter, and says "this is from Ed". I read most of it, get a bit teary......and hand it back to Marco. He has tons of beautiful letters and pictures up at his practice. He says "no, it's for you....to keep". Mine? Ah man....my heart. How precious is this? Marco says "by now you probably have guessed that these aren't students". Huh? Well no, the thought hadn't even crossed my mind. Then who the hell are they? These strange people, taking notes, smiling at me, sharing my private Ed and Ally and Marco moment? "They're from the media" says Marco. Oh. OH? Marco hands me a very familiar and deadly expensive box, a gift from Ed, he says. It's an Iceross Liner! A brand new Iceross Liner! I'm so confused, so very confused now. I manage to sputter out "but what size is it? How did Ed know?" Marco tells me that Ed asked him to buy it for me, a gift, from my Ed. I am properly finished. This is a hugely expensive piece of silicone. And the three strange people are smiling and taking notes and taking pictures, and I am cradling my liner like a brand new baby. And I am blessed. Then the journalists are asking questions. Tons of questions. Old questions that most people would find boring about my life. My accident, how did you cope, what was it like - nothing, I swear nothing in my life is this interesting that three journalists would take time to write down the complete normalcy of my every day existence. Then Marco says "Ed sent you one more thing" and hands me a tiny little box wrapped in pretty pink paper. Can I open it now? Yes, yes, and Marco is smiling and the strange people are smiling, and I am warm inside. So very warm because Ed has done so much for me already, and still he continues. I think my scream may have shattered Marco's glass doors. I think one of the strange people snapped his pencil in half. And I am screaming, and crying, and shaking my head "no no no". This cannot be. Marco is smiling and nodding, yes, yes it is. And then I am silent, tears falling down my cheeks. I am holding sixty thousand rand in my hands. I am holding my first brand new prosthetic knee. And it's hard to breathe, and it's harder to believe. And there is one more thing.......Marco says "are you ready to speak to Ed?" And he hands me the phone, and I speak with my Ed in person for the first time in all the years I have known him. I forget the conversation now, truely I do. I remember standing in the corner, trying to hide from the strange people, trying to say thank you, trying to not be so overwhelmed that I fall into a heap on the floor. And then we fit the knee. It is so pretty, so small, so light! And I am walking, and walking, and outside I am leaping in the air, and the strange people are laughing and taking pictures and I am queen of the universe. Queen of Pretoria, or Tswane.....who cares - today I am standing tall. And I am wrapped in a bubble of love and compassion and complete awe. The journalists leave, still smiling.....and the biggest black chap turns to me and says....."well, you have a good day. Oh hang on, never mind, you already are!" And I impulsively bear hug him which I guess isn't the most culturally correct thing to do in Africa, but I don't care because I am after all, a woman with a new knee. And I am blessed. Who knew that two most extraordinary people would take such time and care and effort, and conspire for nearly 5 months to make this awesome day a reality for me. And present it to me so beautifully and so lovingly. Lots of hugs, tears, laughter and kind words later, I am on my way home. Light as a feather. Smiling like a crazy woman at people in the traffic. Smiling at nothing and smiling at everything. Smiling and smiling and I just can't stop. My mind is ticking over, my head is going to explode.....I have so many special people to tell. I have so many special people that must read my letter from Ed. There is much to do. Much to do, my Ed, today, and for a long time to come. You are my golden, my PLU. You have blessed me in abundance. And I thank you from the bottom of my heart.
  23. 3 points
    OK...this is my "moderator" self speaking here, so forgive me if it sounds "odd" or even "cruel"...but I'm so glad that we have two new members looking at recovery from an HP! Not that I want either of you fellows to have to go through the operation and recovery...but it's so good that you'll have each other to share the process, work out coping strategies, appreciate accomplishments, advise each other on "what works" or "what doesn't"...and just be able to have someone to consult who is actually going through the same thing at the same time! When you're looking at such a severe operation, it's sometimes very hard to find someone who can fully relate to the situation. So take advantage of this, guys...it's a good thing!
  24. 3 points
    Ok, so if you laugh, you are NOT a bad person. This was taken 3 days after I received the most precious gift of a brand new 3R60 from Ed Dean. My one amputee pitbull is also somewhere in this vid, laughing (I hope), but probably thinking "what a chop"! PS : I am normally quite sane......yip, I am :) http://www.youtube.com/watch?v=0ievUE-fhLU&feature=plcp
  25. 3 points
    Celebrating 10 years survivorship of cancer and Limb Loss today. It's great to be here with all of my friends and family. What an awsome journey that has been created with so many new opportunities, causes, friends and associates. Thank you God.
  26. 3 points
    I changed Leg docs. I had the new C-leg and the choice of three great feet, sub atmospheric electric pump vacuum blah blah.......... I ran across this younger Leg man who still lectures at Northwestern University. He developed a brimless socket for me that has a frame that is wrapped in a rubberized plastic. Harder in some areas, softer in others where my muscle is to allow for flex while walking, skiing , whatever. It is sooooooooooooooooo comfortable not to have anything around my crotch or high thigh. The brimless flexible socket allows me to sit for hours in comfort. Ride a bike with no interference. My gait has gotten better since my feet are about 5 inches apart now when walking. Still suction socket using the Limb Logic which now has the new seal ring. It is so quite and rarely goes off. Still have the new c-leg and I use the New AT-1 Renegade which is perfect for my walking style, weight and airport hopping. Another difference is the liner. The liner he uses is a Medi-Pro which is specially designed for the vacuum system. It also is partly made from UMBRELLAN the material used to help with Phantom pain. It feels like butter is what I told my new leg man. Just had to share since you folks are the only people that would understand. Kirk
  27. 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!
  28. 2 points
    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...
  29. 2 points
    Hi All, Lauren has officially started school! Yesterday was her first day back, and we're back in NY now. Overall, I think it was a very good day for Lauren. She is definitely excited to be back, as school really is where she should be now. She's always loved the freedom and independence of being away, as well as the social aspects of being at a large, dynamic university. I think being surrounded by her friends will only be a good thing for her, and I can tell you that they are all very glad that she is back. It is going to be a major adjustment in that some of that independence and freedom doesn't quite exist just yet, but it will over time. Lauren told me that it felt really weird to be sitting in a class and not have the ability to raise her hand, take notes, etc, but she does have a note taker in each and every class. She did mention that there were plenty of stares, but I (and she) are expecting that -- It is very, very rare to see a double arm amputee, let alone one of Lauren's age, and people are curious. She did not wear the cosmetics yesterday as the weather was so warm. The aide seems to be very helpful and kind, and Lauren is getting used to her. I expect this will take time as well, as there's no doubt that it's an adjustment to have someone brand new touching you, bathing you, feeding you, etc. We are excited to see how she progresses - And I am looking forward to my daily call from her! Thank you for all of your love and support!
  30. 2 points
    It is normal that an initial socket (when you first became an amputee) and a socket made after you've been an amputee for 4 years and your limb has stabilized to look completely different. As your limb atrophies and shrinks the shape changes from round to more angular and the socket usually looks more triangular inside as well as having contours specific to your limb. It should not hurt as it is made to fit you exactly. If your pain is point specific then the socket needs to be modified at that spot. If the pain is in the entire limb and excruciating after about 30-45 minutes it is possible that it is pressing on the popliteal artery behind your knee and cutting off the blood supply to your limb. That usually means that the distance from the front to back of your socket is too short. A socket for an active person is made to fit snugly but it doesn't take much to make it too snug. Cheryl is right that you have to really be able to describe what you are feeling for a prosthetist to be able to fix it. I am also a physical therapist and 2 hours on and 2 hours off is typical for breaking in a new brace or leg but if you're not tolerating it significantly better after a couple of days then there is a problem and the socket needs to be modified or re-made. Don't sign anything until your leg is wearable.
  31. 2 points
    http://www.change.org/en-GB/petitions/david-cameron-to-make-all-microprocessor-controlled-knees-available-on-the-nhs?share_id=pHngwpjvjh&utm_campaign=share_button_mobile&utm_medium=facebook&utm_source=share_petition
  32. 2 points
    Hi everyone!!! A big part of me thinks some animals have it right when they hibernate over the winter - but then we'd miss out on all the holiday fun Sorry I haven't really posted on here, been one of those years since the forum 're-launched' itself. Currently out of work and having no joy trying to find employment - which means I can't blame lack of time for not contributing! Due to have my third grandchild in the next 2 or 3 weeks, so if I disappear for a while, I will return! All the best everyone, and may 2014 be as good as it can for you all.
  33. 2 points
    Well , the turkeys been eaten , the last cracker pulled and we're onto the Stilton and Port so all that's left to do today is to wish all of you a very Merry Christmas and here's hoping for a healthy and Happy New Year to come!!
  34. 2 points
    Thank you all for the comments , it wasn’t meant to be anything special photo wise just a sort of dairy of where I walked this year , something to look back on when I am having one of those bad spells that we all get now and then .
  35. 2 points
    Yes, indeed...we can't let the Brits take all the credit for living in beautiful places! I've never gotten to see much of the east coast, Jane, so bring on the NH pics!
  36. 2 points
    I agree on the great pics, Mick...and I'm glad I checked out Bob's description of the trek, since I kept looking and looking at that photo of him sniffing at heaven-knows-what and thinking "bird? bunny? some kind of odd reptile in a pile of fur?" "Dead sheep's head" would never have crossed my mind, although it made perfect sense once I knew what it was!
  37. 2 points
    LOL Kate, perhaps he just doesn't want a new shower!! I have just been 'project managing' my first ever adaptations to our home to make part of it more wheelchair accessible, its been quite interesting working with different builders and firms trying to get what i wanted and more or less have succeeded in getting it how I needed and wanted it. It never ceases to amaze me what other people 'think' I need and don't realize that what might be helpful to some people with certain disabilities isn't always what is helpful to amputees. I did get in touch with an OT to start off with, because I thought we might be able to get a grant to help with costs (we couldn't), who insisted on checking out the rest of the home too, but I think they did realize I was quite clear on what I wanted done, but found really was only there as sort of admin to give advice on the process of possible grants not to really help on the building side of things, might be different with showers though. Cheryl ..... I too have been using a 'naked leg' this year and get stuff like that all the time, some interesting comments have come from other amps, like 'why is one socket longer than the other' and recently from someone else 'oh you haven't got a proper leg on'.
  38. 2 points
    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
  39. 2 points
    Cheryl, I hope this third test socket will be your last one, but even if it’s not, there’s nothing much to worry about I guess.Precise socket fit is essential but I’m sure you know how it works with all these modifications and tweaks till you get that ideal one.You seem to be a very seasoned and experienced person in this regard..... in other regard, well, I see you’re an enchantingly adorable and nice individual, in fact like many others here on this great site. As for this suction suspension system, I basiacally had a similar experience to yours. I was once fit with one and it felt damn good too at the beginning. Though again, I’m an AK and the whole system was a bit different as it wasn’t exactly a roll-on liner just being put into a rigid socket but a direct (flexible) contact suction socket ( also called a ‘dynamic suction socket’ I guess) being fit into a hard carbon supportive frame. The whole thing is based on the idea that it should be the most intimate fit possible between the human body and any mechanical ‘thing’. The limb then is in full contact with the socket wall with nothing in between whatsoever. I don’t think they use these direct sockets for below knee amputess. Like I said it felt great at the beginning but with the a couple of test sockets to go through, the longer I was on that system, the more I could feel it was not for me. One day the leg just fell off just in the middle of a crowded street. That was a real ‘bummer’, to say the least. Can you imagine a 6’2, 220-pound ugly-as-a-mud-fence guy starting to leap and tumble like crazy all of a sudden, trying to prevent himself from hitting the ground, almost like that Jackie Chan? I was on the Rheo knee then but it didn’t help much. I hit the ground like a sack of wet cement. After that I remember I even tried a couple of seal-ins with rings and stuff but apparently I didn’t feel it was any better alternative either. That was basically my last ‘fling’ with the suction any-system. That’s pretty much it. I’m sure it can work perfecrtly for some AKs and even for more BKs. I wasn’t the one. Then I switched to C-Leg and this old good pin-lock socket , like you’re saying.Oh yeah, ‘walk baby walk like no ever does’. I’ve been on the pin lock since then. It never fell off and it never will. Well, I mean it could but only together with the stump I guess. I categorically reject such ‘possibility’ though. Take care Cheryl, and thank you all good people for being here. Whenever I happen to lurk on this forum, I feel real good. I don’t know, it somehow feels like ‘home, just like that.
  40. 2 points
    OK amputees, lets keep up the good work, we have just started We have afew that have contacted us since our last post...I know there have been several popping in, but are not posting. Don't be shy, we enjoy all the little tidbits you share. I would hate the fact that new amputees didn't have the same words of wisdom I received when I was a newbie. They shared their experiences and made me feel good about myself as I was feeling low {real low} when I started.
  41. 2 points
    Well thanks for the email. I thought this forum was gone for good! Glad to know you are back up and running! Freddy
  42. 2 points
    Hi Everyone, I'm in my second week using the Ossur Iceross 5 ring liner with a light sock under and in a new socket and so far so good! I had been plagued with scar breakdown, infection, yadaa, yadaa.... since Christmas. The last round kept me out of a leg for a month. I so wish my crutches were wood so I could burn at least one pair as a sign of freedom from the retched things. When the wounds were being so stubborn to heal my wound care person gave me a goop called "Medihoney". The stuff helped work off the dead tissue allowing the new stuff to form. It has worked great and helped me to avoid the Plastic Surgeon office that was next on my wound care person's suggestions. The stuff is a New Zealand product made in Canada. I'm going on line later to order a tube just in case the problem comes back. I'm off to the gym to further test the liner and socket. I also can show off my new socket colors. I went to a "smoke shop" type store were amongst other things they had a great collector of colorful tie dye shirts. Usually the resin coating mute’s colors bur in this case they popped. Bright yellow, vibrant pink blue and green are great. Happy colors and certainly no trying to hide what it is. Why should I. Like my glasses it is part of the package. Have a great day all. Jane
  43. 2 points
    Hi Again to All, Since the site was down for so long folks may not know it has resumed. Would it be appropriate to have a email notification sent to members on record? Could it logistically be done by those masterfull computer folks? Jane
  44. 2 points
    Great to be back in the saddle again.
  45. 2 points
    Wow ... nice to be back again as missed everyone on this forum. Not a lot of news to report, leg-wise lots of ups and downs and still struggling with getting prosthetics that fit again, such is the system here, but am on the case again and fingers crossed.
  46. 2 points
    OK...Everyone of a certain age, please sing along with me........ Oh It's another Saturday night, And I'm stuck here in Rehab, With a wound vac sucking on my foot............ Had a pretty good visit with my doctor yesterday...he's still not going to promise me that I'm completely out of the woods (there's still a small piece of bone that's very close to being fully exposed), but he's continued to be impressed with the healing and is starting to make noises that I may be able to head home with visiting nurse care much sooner than anticipated. (Hooray!) The trade-off? I have to promise (and then prove to all and sundry) that I am capable of hobbling gingerly about on my right heel for, possibly, another two-to-three months. I'm getting better at this, so I may have a chance! I'm a bit of a puzzlement to the rehab team...they deal mostly withstroke victims, broken bones, and new amputees, so one who's been at it for several years shakes up their usual routine. I can already do so many things that they have to train other patients to do (transfers, wheelchair protocol, self-care, awareness of my body, etc....) that sometimes we just run through a whole session of me doing my "tricks" and them checking me off. Then we go back to "Hobbling on my right heel" and I become as weak and fearful as any of the other little old folks here......very odd.... Anyway, progress continues to be made and I continue to hope!
  47. 2 points
    yep Marcia I think it is to do with all the gear, perhaps also less blood going around the system, less sweat glands etc., I've had my amps for over four decades and always felt the heat ... meno heat is different ....just an added bonus for us lady amps! lol
  48. 2 points
    I've had around 20 sockets manufactured in the last ten years and in that time every single one has had the inner socket a little longer than the outer. The reason of this is that the two components are doing different jobs. The inner interfaces with you (the wearer) and is made of a flexible (to some degree) material to cope with changes in stump shape during normal use. The top of the socket is cut to suit your body, the ends are normally flared (curved) to make it more comfortable. The outer is the support frame, it is purely structural and designed to transfer the forces from your body through to your prosthesis. It is quite common to have windows cut into the outer socket in order to make sitting more comfortable, relieve pain in problem areas (such as a point in the stump where the muscle is rolling over the bone) or even to reduce weight. Depending on the materials used the outer socket can be very minimal, have a look at the ISNY socket, its no different to a standard ischial containment socket other than the frame has been reduced in size as much as possible. It sounds like your prosthetist is making a socket that is perhaps beyond their current skill set, something that is sadly far too common. I experienced it myself with a prosthetist making five sockets before finally saying (in passing) that he didn't really make that type of socket very often and wasn't very experienced in doing so. Once I asked why he was doing work that was "out of his scope of practice" he stopped wasting my time and found a colleague that was correctly trained to make me a socket. A good socket is comfortable to wear all day long, you should be able to put it on in the morning, go about your day as normal and take it off when you're done for the day. Whilst not regularly I have, on many occasions, worn my prosthesis for longer than 48 hours covering a days use, 24 hours of flying, several hours waiting in an airport before finally arriving at my destination just in time to start a days work. It's not a good idea to do this but it should be possible and if your socket has been made correctly it is. Good luck getting your leg sorted and let us know how you get on.
  49. 2 points
    I agree with Jonny, seems like separate things going on, neuroma's can be easily dealt with. Instability in your knee joint is an orthopaedic issue and I would seek a second opinion. Becoming an above knee amp is the last thing you need, understand your fears. Hope you manage to get the help you need with this.
  50. 2 points
    Congratulations to both of you - you are both such great models for others.
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