The Amputee Coalition of America (ACA) certainly is a group that is alleged to actually go through as 'support' group. I would assume they even pose, act, portray themselves as such.
The board member and directors list of the ACA also contains Pat Chelf (Otto Bock Healthcare), Jeffrey Lutz (Hanger Orthopedics), David McGill (Ossur), Leslie Pitt Schneider (Otto Bock Healthcare), Terrence P. Sheehan (Adventist Rehabilitation Hospital of Maryland) and Scott Stevens (University of Tennessee Medical Center). While the ACA website claims a majority of board representatives are amputees that clearly is not the case. it actually appears that the amputee community is seen as a business opportunity because I can tell you for free that so many industry representatives on one board are not there for fun and play. They are there to see that motions passed and decisions made are in favor of their companies.
In the view of someone like me, who looks at amputee issues as comprehensive well argued unilateral interests, there is a conflict of interest was I to regard the ACA as amputee support group.
Because given reality, an amputee support group will, among other, provide:
- means to enforce our interests against these of insurances; insurances are known to take our money in for sure (hence 'in'-'surance') but only pay back in selected instances, causing permanent problems for amputees;
- means to enforce our interests against these of prosthetic component manufacturers; these are rumored to manufacture crap parts they sell at dream prices;
- means to enforce our interests against the medical establishment; they may not mean harm but at times they may be ill-informed and ill-trained, not able to provide diagnosis or treatment for situations they simply do not know anything about as arm amputations are relatively rare;
- means to enforce our interests against these of prosthetic technicians; obviously, technicians make money by selling parts we could buy directly, they may lack product information and training, and they may contain relatively strange attitudes and views about disabled people;
- means to enforce our interests against these of academic researchers; academic researchers use research keywords of 'prosthetic hand' and 'prosthetic arm' or 'rehabilitation' but do not provide any real improvement for amputees at all - much rather, they play with useless parts to write up academic ideas about rehabilitation that have not seen reality in decades.
Quite obviously, doctors, component manufacturers and other involved people do not always mean harm. But they do infiltrate amputee support networks as part of the extended lobbying they are doing. So when a prosthetic technician writes answers to questions that concern me as well, let's see whether we can find some alternative answers.
So, Jeff Lutz CPO took it upon himself to answer - all by himself - the following questions in an article published by the Amputee Coalition of America (link) whereas we will see some alternate answers as follows.
Q: Why does my prosthetic limb have to be so heavy?
Jeff's A: Prostheses range from very light to heavy duty. The components that are used in your prosthesis are designed for specific patient weights and activity levels. All lower-limb prostheses are subjected to very high degrees of stress. The forces generated by simply walking on a level surface are significantly higher than your body weight. Walking up and down ramps and stairs creates even greater stresses on the prosthesis, so it is very important that you and your prosthetist discuss your environment and activity level. Modern advancements have led to stronger yet lighter-weight components, made from materials such as carbon fiber and titanium. The goal for the design of your prosthesis is to provide you with the lightest-weight device possible, which will safely allow you to perform to your highest potential activity level. A loose-fitting socket or lack of adequate suspension can also lead to a feeling that the prosthesis is too heavy. If you find that your prosthesis feels heavy, see your prosthetist.
Wolf's A: Prosthetic limbs can be built sturdy and light. But one has to look outside the realm of prosthetic technicians tinkering away. For that one has to re-design all parts carefully. I wear body powered arms equipped with customized special built wrist units (Ramax holding steel), customized adapters, light and sturdy Becker hands, Hosmer hooks, V2P hooks, Mert hands, carbon fiber sockets, custom re-designed high tech cable mounts and special made shoulder braces for perfect fit and control and ultra light weight. The answer is, no prosthetic limb has to be heavy but to make them sturdy and light, one has to invest time and engineering effort.
Q: How can I control perspiration in my prosthesis?
Jeff's A: Different people have different levels of perspiration. New amputees often experience a period of high levels of residual limb perspiration when first wearing their prosthesis. This heavy perspiration period generally subsides as your limb adjusts to its environment inside the socket. If unusually heavy perspiration continues, your physician may prescribe specially formulated antiperspirants, such as Drysol®.
Wolf's A: Perspiration is an everlasting problem. It doesn't just go away. There are two specific problems - prosthetic fit, and, skin issues. The stump will sweat more if the socket does not precisely fit the stump. You may have to ride your prosthetic technician very hard and for a long time until you actually have that well fitting socket but it is totally worth it. Once you achieve a best fit through persistence, through insisting, and through hard representation at your prosthetic technician's office, through networking (publish who are the black sheep of technicians that won't fix a bad fit, the community needs to know) then you can address skin sweat issues. That question must not be asked to a prosthetic technician but ideally a dermatologist. Treatment can contain proper stump compression, skin creams, regular antiperspirants, strong antiperspirants and even Botox injections to silence the sweat glands.
Q: How long is my prosthesis supposed to last?
Jeff's A: The useful lifespan of your prosthesis depends on several factors. Changes in the residual limb volume (size) often necessitate modifying or replacing the socket to maintain a proper and comfortable fit. Changes in activity level, body weight, component fatigue and general wear and tear are all factors that determine the lifespan of the rest of the prosthesis. It is critical that your prosthesis fit properly and be in sound physical condition to withstand the forces placed on it daily. I recommend that prostheses be evaluated and safety-checked at least every 6 months by a certified prosthetist. Often, major problems can be prevented by early detection.
Wolf's A: Prostheses fall apart or lose usefulness in a component-dependent fashion. On my arm, the cable broke every 7 days at first, the Otto Bock wrist crapped out after 3 or 4 months, the Otto Bock hooks started to wiggle after a few weeks, whereas the socket would remain in a good condition for a lot longer. By swapping frequently failing parts for better parts, the overall lifetime of the prosthesis increases. Friends don't let friends wear Otto Bock. Right now I wear a three year old socket, a two year old wrist and a number of terminal devices I operate since around two years - all are un-serviced and there does not seem to be a need to service these either. The current frequency for cable replacement is around 5 to 9 months due to construction issues, and we work towards extending that time as well by crafting the whole setup in a technically better way. You should learn to check for and to fix frequent problems yourself. You should pay attention to possible failures and get spare or replacement parts early. Also there are accidental damages that can occur. Optimally you might be able to run a prosthetic arm for at least 2 years without any particular fix or part swap.
Q: Why cant it look more like my other leg?
Jeff's A: Advancements in prosthetic cover material and skins allow most prostheses to have a very pleasing cosmetic appearance. When desired by the patient, a cosmetic cover and skin can be made to be removable by the wearer. Some prosthetic users have times when they prefer to not use a cover and other times when they do. The cover and skin not only provides a pleasing cosmesis, but it also protects the prosthetic components from moisture and physical damage. A satisfactory cosmetic effect can be challenging in cases where the residual limb is actually larger than the sound limb. This is more often the case when dealing with a recent amputation. As the swelling in the residual limb subsides over time, closer cosmetic results will follow. It is important to share your preferences for cosmetic appearance with your prosthetist.
Wolf's A: Prostheses can be covered with silicone covers. With increasing price up to 20'000 or 30'000 USD, you can get life like covers. For still photos these may really provide a great similarity to human skin. However, maybe that much effort is not worth it and a moderate or low degree of fidelity is enough. Keep in mind that motion of the prosthesis will be off anyway and no way to hide that. Wearing a technical or colored, artsy or crude look of a prosthetic arm or leg might be a way to save money, time and a way to feel better about it. Maybe your prosthetist is not the person to ask first about your preferences for cosmetic appearances - maybe asking friends, family, artists, art school students and other people are the people to ask first.
Q: How will I ever be able to pay for my prosthetic care?
Jeff's A: Most private insurance, as well as Medicare and Medicaid, covers prosthetic care. The Amputee Coalition and other groups have worked very hard to introduce and pass parity legislation in many states to ensure that insurance companies do not place unrealistic limits on prosthetic care. Federal legislation is also pending. If you are not insured, talk to your prosthetist. Other sources of funding are out there, and he or she will help you find and secure it. Dont give up there is always a solution!
Wolf's A: Overpriced components and massive add-on prices by prosthetic technicians combined with low to moderate mechanic skills of technicians, absent to low degrees of technical understanding and strange modes of negotiation by technicians make prosthetic pricing a massive issue for amputees. Bypassing these then is first and foremost. Getting high quality parts is a second step. Separating socket and component assembly is a third crucial step for empowerment. Then, prosthetic limb function, life span and affordability can be maximized, and long lasting parts can be re-cycled almost forever. So far, no amputee support group managed to leverage these interests.
Q: Is there something new out there that would make a difference in my life?
Jeff's A: It is difficult for people with limb loss to keep up with the advancements in prosthetics. Over the past 5 years, huge strides have been made in available options. New technology, including microprocessor knees and feet, advanced hands and sockets, has made significant improvements in the lifestyle of countless amputees. The Amputee Coalitions publications and your prosthetist can keep you informed about what advancements could benefit you.
Wolf's A: Don't only focus on prosthetic limbs. They are just a part of a body and a life. Focus on sports, healthy living, make sure to focus on activities generally. Surf the web with a broad and open mind to look for new components and developments, don't rely on some biased industry representatives such as the ACA to relate news to you - by the way these guys publish it they probably already negotiated a +30% interest rate with the products they recommend.