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  1. 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.
  2. 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!
  3. 2 points
    Okay, gang...I've calmed down enough to write a coherent letter, and you've reassured me that I wasn't over-reacting. A letter is on the way to the facility! Thanks!
  4. 2 points
    Hi Cheryl , Firstly sorry to read about all the bother you are having with your foot and I hope that you can get it sorted soon. Now to your post , as you may or may not know as far as amputation and all the stuff that goes with it I tend to treat mine as a huge joke , make jokes about it ,couldn’t care less what other people think or say don’t give a monkeys who see my “stump” when I stop to sort it out …………….but after reading your post I must admit I would feel outraged at what happened , in fact not even my wife would carry on like that and like I say I’m so easy , I can honestly say I would most likely punch the person and report them ……………….unless she was a tall leggy blond wearing a skimpy outfit and a drop dead beauty but then I think I’m on about a different scenario (mick slaps himself round the face) No I can honestly say if that happened to me I would report the person and kick up a right stink not only for myself but for any other people who might end up in the same situation as you
  5. 2 points
    Hi Everyone, I hope you are all doing well - And greetings from snowy, cold NYC! I just wanted to send a quick update - Lauren is doing well. She's back at school now for the second semester and so far, it's going very well. We really enjoyed having her home for the winter holidays and for the new year. While there are still many things that she can't do independently, it's gotten so much better as she's adapted to using her feet and even her mouth. There are highs and lows, of course, but the lows are getting less frequent. She has been dealing with some bursts of phantom pain the last week, so we are getting that checked out - There may need to be a change in her meds. I will continue to keep everyone updated. And again, thank you all for your support.
  6. 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!
  7. 2 points
    Thank you Ann and Cheryl! We've been very, very busy getting Lauren ready for school! We flew down there last week to start preparations for her return (we're back in NY now), met with the therapists who she will be working with, and met with the 24/7 aide who will be with Lauren. She's very nice, and very willing to help, which is great. Lauren is definitely excited to get back to school, but I think she is nervous at the same time. It's absolutely going to be a challenge for her on many levels, but I know she's going to be able to conquer it. I think the emotional aspect of seeing people for the first time since losing her arms is going to be very hard for her, but I know that her true friends at school will help her get thru it. On the physical side, David and I are comfortable knowing that she's going to have the help she needs when she needs it, and that she'll be continuing her therapy. Lauren is continuing to make progress on all fronts, and her feet are getting more and more flexible as they continue to learn and adapt. She still needs help eating and still needs to be dressed, but she's making progress slowly but surely. She does sometimes get upset about the fact that progress seems slow, so we try to remind her that Rome wasn't built in a day, and that she's undergone a major, major physical change that will take time to adapt. I think she was initially expecting that it would be a matter of a few weeks until she was fully independent, but that's just simply not realistic, and it's going to be a marathon rather than a sprint. We leave Tuesday to head back to school to finish getting all set up - We will keep you posted!
  8. 2 points
    Hi Marian, I am not an arm amputee but a RBK. I thought you and your daughter might find the following you tube channel a useful and inspirational resource: Tisha Unarmed - on You Tube. Tisha is a 26 year old women who was born without arms and her right leg shorter than the left. Tisha has posted 52 different videos on her you tube channel demonstrating how she does everyday tasks with her feet including: Going shopping/Cooking Taking care of her dog Doing her laundry & other tasks Painting her toenails/Putting make up on Many more topics included on her channel documenting her active/independent lifestyle Kind regards, Sara
  9. 1 point
    All, I been posting on here for a little while now about my various experiences and frustrations as a Hip Disartic Patient, and the lack of support advice and information available to us. As we make up such a small group of amps in the scheme of things, my experience is that we tend to get over looked, whilst we do have lots in common with all other amputees we also have very specific needs and requirements. I have written on here before about about various things (usually negative) but also on a positive note I have managed to obtain an advanced NHS funded prosthetic that has had a significant positive impact on my life. I have spoken to other Hip Disartic patients in the UK and found it helpful to share experiences and advice and generally talk to someone of a simliar mind set. To help make this easier, should anyone want to join, I have set up a Facebook Group specifically for Hip Disartic / HP Amputees. Group to share information and advice for the Hip Disarticulated people, specifically for, but not limited to people in the UK. The intention is to raise awareness of what can be done for high level amps specifically and just a place to come to for some support / advice / info with like minded individuals as during my experiences I found absolutley nothing helpful and it was a very lonely place. If you search Facebook for Hip Disartics UK you should find a group to join, I've made the content hidden so only if you join the group can you see whats in it. Its early days so not much on it but have quite a few ideas of information, videos etc that can put in here that hopefully will help. The offer is there should anyone want to join and at least talk to people who are in the same boat. Time to help ourselves I think
  10. 1 point
    Hooray for Lauren!!! I think you've all turned a corner here, Marion...there comes a time when a horrible, all-consuming event that sits right in the middle of your life demanding that you focus on it becomes...well...just a horrible event that happened. And then you start rebuilding a normal life. Sounds like Lauren is headed that way! Good for her, good for her wonderful friends, and good for you! Do keep us posted!
  11. 1 point
    Well I think those are some lovely developments! I know that you have some concerns about wanting Lauren to be fully self-sufficient, Marion, but do try to keep in mind that she wasn't "fully self-sufficient" when she set out for college pre-accident either. This entire time in her life is about that "becoming fully self-sufficient"...she just happens to have an additional challenge to master. If she is feeling strong enough to give it a go, she's also very likely to sort out what to do and/or who to call if she does run into a difficulty that's beyond her present abilities. The more independent she can be, the better! If she has a good caregiver working with her, they'll no doubt be able to figure things out between them........ I'm not only glad that Lauren and her dad got some nice "together time," I'm happy that you got a chance to just step back a bit and have a few minutes to think about things...or not think about things, whichever you most needed! Sometimes it seems that a situation like this can be harder for the parents than for the amputee. The person actually going through the recovery truly knows what's happening, what it feels like physically, how it affects them emotionally......their family and friends have to just guess at all that. Take your cues from Lauren...while you're all learning about the "technical" parts of being an arm amp together, she is the ultimate authority on her body, mind, and emotions. It sounds like you're doing your best to be supportive, so remember that granting Lauren that authority over herself is a major way to support her! Do keep us posted....this is an exciting time in a new amputee's progress and there are many of us pulling for Lauren!
  12. 1 point
    Hope it's a good day for you, Johnny! I'll be hitting that point next February...what's it feel like?
  13. 1 point
    Hi, Marion... Glad to hear that Lauren's continuing to make good progress! You know, I'm one of those folks who think that, when you lose one ability/sense, what remains becomes that much stronger...if only because "what's left" becomes so much more necessary to you. Case in point: When I broke the foot that led to my amputation, I had recently had some really massive surgery to rebuild my other foot. Situation: Right foot (recovering from surgery) was "bad" foot...Left foot (unbroken) was "good" foot. After the fracture, though, instantly, Left Foot became my "poor sick baby" and Right Foot suddenly realized that it was long enough after that surgery and I really should start using it now! Now I know that was just my mind-set, but it was astonishing (and more than a little funny) just how quickly my mind-set changed. In Lauren's condition, I can imagine discovering that toes are ever-so-much-more useful than one had ever considered before. Now for the dating issue........that's another tough one, usually more so for the women than for male amputees. A guy can feel "tough" or "macho" about his missing part(s)...and a guy also tends not to think so much about his desirability being based on his physical state. It can be different for us gals....and even more so for a young woman...and (just speculating on this one) probably really tough for a young woman who's had a lot of her public identity caught up with physical pursuits such as sports and cheerleading. You're on the right track, though....there are plenty of young men out there who truly will not care about Lauren's "disability." They'll care about Lauren the person, and they'll admire how she's learned to cope with her situation. We have a good number of happily married amputees here...some who met their mates before amputation and some who lost limbs afterward. It's the people who matter, not the limb count. OK.......now for a warning.......and I don't know how much you would want to know about this little "sub-culture" I'm going to tell you about, or how much you'd want to talk with Lauren about it in these early days......but there are some folks out there who would be attracted to Lauren because she is an amputee. Not because she is a fine person who is handling her amputations well, but specifically because of her amputations. They are known as "devotees," and they get sexual pleasure of various sorts from amputees. There are various reactions to them among the amputee community, and it's something that I think each individual amputee has to decide for themselves, but a lot of what I've heard of them indicates that many of them treat their amputee "obsessions" not as human beings but more like a collection of missing limb(s). Just be aware of that.....and let Lauren know about that possibility in the best way you know how. (Heaving sigh of relief as I move on to other matters...........) In a strange sort of way, Lauren's particular set of amputations may actually help her with one of the major quandaries for amputees in the dating scene....specifically, "when do I tell my date about my amputation?" For a leg amp that can be a serious question...some of us wear pretty realistic-looking prostheses, or we wear slacks or long skirts....in other words, it's easy to overlook a leg amp's amputation. "When do I tell" can be a big deal. In Lauren's case, well, people are going to notice...and once she's adjusted to that "being noticed" business, it will be a good way for her to discover just who is superficial enough to be bothered by dating an amputee and who is someone worth spending her time on. She's also likely to become very good at expressing her romantic interest and affection in ways other than holding hands or hugging! (I'm expressing it humorously, but, honestly, I think she'll likely become a "master" at playing "footsie," snuggling on a fellow's lap, casting flirtatious glances, blowing in his ear.........you get the picture.......... ) So remind her of that, gently, if you wish........... OK, school! I think you'll all be surprised at how accommodating a university can be. My own work background was in an administrative office for K-12 education, where I spent several years involved with my district's special education programs. (Please note that "special education" can indeed mean "perfectly intelligent but physically disabled." Some folks have a problem grasping that, and I apologize if I've insulted you, there! ) "Accommodation and accesability" are the watchwords of modern education, and Lauren will be in a perfect position to benefit from that. I'll venture my own opinion here, for what it's worth......sooner is better than later. You can work and work to make sure that every possible problem has been addressed, but you'll never truly succeed at that. Some completely unexpected situation will eventually turn up......same as raising any other child. If Lauren's eager to get back at it, meet with the staff at her school on the accommodation issues, do what you can to be supportive, and let her see what she can accomplish! If she does find that there are still skills she needs to master, she always has the option of withdrawing from classes and going back to working full-time on those issues. (It might be good if she's at the point where "eating and dressing" are relatively independent actions, but beyond that....................................) Hang in there, Marion...you're all going to get through this. Have a nice Fourth yourself!
  14. 1 point
  15. 1 point
    Thank you Johnny! We will definitely check out that organization. It's been a struggle to find other arm amputees similar in age to Lauren, let alone someone with the same level of her amputations. This weekend went surprisingly well. We had a family wedding over the weekend. Originally we didn't think Lauren would want to go, seeing as it was so soon after her accident, but surprisingly, she told us 2 weeks ago that she absolutely wanted to attend. I was absolutely surprised, but in the best way possible - My daughter wasn't going to let amputations stand in the way of having a good time and being with family! Needless to say, the entire family (including my niece, the bride) was overjoyed that Lauren was able to attend. Lauren definitely did well up and cry a bit as we were getting her dressed and when she looked in the mirror, but we were able to pep her up and she got over it. Arms or no arms, she looked absolutely beautiful! I will try to figure out how to post a picture. She did surprisingly well at the wedding, which I know was so tough because there were so many people there who hadn't seen her since she had her amputations. Many of our relatives told me that they couldn't believe how well she seems to be doing. She stayed with us most of the night, and we fed her and took care of her. I know she would have rather been out there on the dance floor, but that will come with time. Overall, I couldn't be more pleased at how it all shook out! Best, Marion
  16. 1 point
    Thank you Kitkat - sound advice as always. At least I know I'm on the right track - I'm using bits and bobs like long-arm reachers etc. to help with dressing and undressing and I'm scouring the internet for other useful gizmos. I do find though that in theory the gadgets are a fab idea but in reality they never quite live up to the expectation. I think you may also be right about needing to go to a rehab centre .I know my family are more than happy to help, but I am going to be so incapacitated for a while I just want to be as prepared as possible beforehand!
  17. 1 point
    I have not been on here for quite a long time but have some good news on new technology that I am now using If you haven't heard of the EMS socket system, you will soon. I was the 2nd to receive this new inner socketry. First being a 40 year amputee BK and me being a 5 year amputee AK. Think of a golf ball and envision what the cover of a golf ball would look like inside out. Think dimple out or raised dimples. Your cast the same but the end result is a pliable socket thousands of "raised" dimples (oxymoron I know). Once my leg doc receives this piece from the manufacturer I am cast again while wearing it. When I came back the next time the socket is complete and in one piece. The inner socket is epoxied inside the carbon socket. I also use a proprietary pump system. Here is what is so cool about this new socket: The thousand of raised areas create a larger surface mass, 60% larger mass to be exact. Now I have a much larger area holding vacuum on my stump liner. The raised area also acts in a gripping fashion and the combination creates hold that I have never felt before. There are now about 15 of us on the globe with this new tech. They are designed by an amputee business associate of my leg doc and are now being made by Otto Bock I'm about 5 months in and the socket feels more part of me and the vacuum hold is amazing
  18. 1 point
    Ann, I think you're absolutely right about that! We amp women have a number of issues that non-amp ladies don't have to think about...whatever makes us feel comfortable is a good thing. I have a very good friend who has an ongoing problem with my "naked" prosthesis. She is a lovely woman and has been very supportive, but she really can't seem to figure out why I wouldn't want my leg to "look normal." If she were ever to lose a leg, I'm sure she'd want to have the best cosmesis she could afford...that would be a comfort to her, and I think anything comforting in that situation would be nice. Now on the "dress and footwear" front, I love the description of your "formal dress" outfit, Kate! And yes, I think if anyone ever comes up with "cute shoes for women with foot problems" they will become overnight millionaires...wish I could manage that one! I happen to be a fan of TV's Dancing With The Stars, and it's been fascinating watching Amy Purdy compete, both for her ability as a dancer and for the combinations of her costumes and prosthetic feet/shoes..........granted, I'm not a wonderfully young, beautiful, incredibly fit amputee woman, but it's been grand watching one in action...and she has certainly looked really, really elegant! I don't know if all of these "offshoot" topics are addressing your original situation, Jane, but I hope it's helping!
  19. 1 point
    I think it boils down to whatever is comforting to you.
  20. 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
  21. 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.
  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
    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.
  24. 1 point
    I met an AKA the other day at my rehab centre, he told me that the DWP had re-assessed him and told him he nolonger qualified for DLA. Unfortunately I could not question him further as I had been called away by my physio. Sparky
  25. 1 point
    Here's mine again! My Own Story I had been joking with other patients on the orthopaedic ward that the doctors didn’t know what was wrong with me and despite flu-like symptoms for the ten days previously, I wasn’t unduly concerned about my health. The aches in my leg as well as a couple of scabs on my knee that were taking longer than usual to heal were causing slight concern, but I had no reason to expect the sudden flurry of activity around my bed. A group of doctors, consultants and other medical staff all turned up to see me and seconds later the curtains remained closed, and the top surgeon Mr Ashley Brown & his Team at Southend General Hospital broke the news to me in no uncertain terms. He told me he had to operate immediately and even then he could not be certain he could save my life. He said he had no choice but to continue cutting until he was certain he had removed all the infected tissue. I was suffering from Necrotising Fasciitsis,a Tissue -eating bacteria which cuts off the blood supply and attacks organs, muscle and body tissue at a rate of 2cm an hour! Antibiotics can’t treat it, and if not dealt with swiftly it can kill and often does. When the bacteria is removed from the body, it leaves toxins into the bloodstream causing the body to go into toxic shock, and sufferers often die from this rather than the NF. I couldn’t believe what I was hearing and there was barely time for the news to sink in. I had just two hours to prepare myself for an operation that at best I would survive, with a leg missing, but at worst I would not survive at all. There was just enough time to see my German girlfriend Silke and my two daughters, Amy 12 and Louise 15. ( I am divorced) It was an emotional time for everyone, but at least I didn’t have long to dwell on what was about to happen. It was hard to believe that just a couple of weeks earlier life had been perfectly normal, and now I was being told I could die. I worked as a roofer, and only twelve days previously had been working on a flat roof, where there had been some stagnant water in a blocked outlet. It was nothing unusual and I am quite used to have clear leaves and other debris from such ducts. This time, the foul-smelling water obviously harboured this deadly germ and a couple of scabs on my knee provided the point of entry for the infection. Sore knees are just one of the hazards of working as a roofer, and as one of my hobbies is scuba-diving, they sometimes don’t get a chance to heal very quickly. Just a day after working on the roof I began to feel unwell, with flu-like symptoms, and aches and pains in my leg, which I put down to a pulled muscle while I had been working. This continued for almost a week, before a friend took one look at me and said I really ought to go into hospital. Even then staff didn’t know what the problem was, apart from the Dermatologist a Mrs Henderson who’s quick thinking in sending away cultures for analysis confirmed the diagnosis of NF. Following the operation, I was put in a sedated coma for ten days, as the toxic shock took over my body, and I was left to fight for my life. It’s a little like having sunburn on the inside as the body heats itself to such a high temperature to fight the bacteria, and all this overheating causes the body to burn up many calories. It as very fortunate I weighed a hefty sixteen stone because those who don’t have any excess weight, literally waste away. Afterwards I weighed just 11 1/2 stone, and soon after I came out of the coma, I remember my mother trying to force me to eat chocolate as nursing staff had told her how important it was that I should eat. My leg had been cut eight inches above the knee, and because it wasn’t a planned amputation, and surrounding muscles were infected, it wasn’t finished in quite the same way. Fortunately an eminent plastic surgeon happened to be at the hospital that day. Mr Lotion Kengesu He, along with many other doctors were present during the operation, as it is something very rare. His expertise ensured I was left with a stump that could accept a prosthesis ( walking aid) without the need for further surgery. During the ten days I was in the coma, Silke, an osteopath, talked me through what had happened, and I did take in things she had been saying. The first time I was fully conscious I didn’t want to look at what was left of my leg, but it is vital to do so as part of the recovery process. You have to accept what has happened, andI was given counselling by some wonderful nurses, (by this time I had been moved to a specialist Plastic sugery unit St Andrews in Chelmsford ) who helped to look at my leg, touch the wound and see what had been done. It is hard to describe my feelings afterwards, as it is something none of can ever imagine happening. The first time I tried to sit up was awful. I had been lying down for two weeks, and as I raised my head the room began to spin, I felt nauseous and it was very emotional. It took a while to come to terms with what had happened. I spent a couple of months in rehabilitation , before finally coming home, and learning to adapt to a totally new way of life. I now wear a prosthesis and prefer not to wear a cover on it to make it look like a real leg. The phantom pains that amputees can suffer from are very painful, as the nerve endings look for a path, and if you start kidding yourself the false leg is a real one, the pains can be far worse. My family has coped well with what has happened to me and my girlfriend has been very supportive. Obviously I had to give up my job as a roofer, and am now still keeping busy. Studying for a diploma in I.T. Scuba diving & playing chess! I plan to go to University in January for a short course to train as an Access Auditor, helping to ensure public buildings come into line with various disability requirements. I also Work as a voluntary visitor for amputees and the disabled. Disablement has opened my eyes and made me reflect on how fragile our lives can be. Until this happened I was just like every other able bodied person, not really caring much about the disabled. But I now know just how much discrimination there is amongst the British whose ,traditional stereotypical stiff upper lip, and dislike of anything not quite normal prevents them from really looking at what’s going on and seeing how they can help. I am very different to the man I was a year ago and despite the trauma I have been through, I have emerged a much better person. As long as I get up one more time than I fall down! (sic Chris Moon) 1 leg still standing! :D Ps Since writing this piece 4 years ago, I now work as a Access Officer at Chelmsford Borough Council, I work as a model part time also. I have married my beloved Silke and I have continued working within the disabled movement: I play amputee football for Southend United, Scuba dive, play chess for Essex.
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