579316 research-article2015
POI0010.1177/0309364615579316Prosthetics and Orthotics International X(X)Cooke et al.
INTERNATIONAL SOCIETY FOR PROSTHETICS AND ORTHOTICS
Case Report
Life without limbs: Technology to the rescue
Prosthetics and Orthotics International 1–5 © The International Society for Prosthetics and Orthotics 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0309364615579316 poi.sagepub.com
Deirdre M Cooke, Matthew Ames and Saul Geffen Abstract Background: This article reports a rare and inspirational case of a four-limb amputee, the range of integrated technology solutions that enable him to be a productive member of his family and the process and pitfalls of seeking technology solutions. Case description and methods: A complex case of bilateral transhumeral amputation and bilateral transfemoral amputation with residual upper limbs too short to oppose is presented. The multiple ‘high-tech’ and ‘low-tech’ devices used on a daily basis to move around his house and community, control his environment, communicate and feed himself without the use of limbs, prostheses or a second person are outlined. Findings and outcomes: Recent advances in electronics, computing and telecommunications technologies provide him with capabilities not possible 10 years ago. Conclusion: The process and pitfalls in sourcing technology solutions and the innovative solutions to meet the unique functional needs of this individual provide guidance to those with similarly severe and profound limitations to independence. Clinical relevance Descriptions of technology solutions to improve independent functioning of those with quadruple amputation without prostheses as well as those with high-level spinal cord injury are of value to occupational therapists, patients and families alike. Keywords Bilateral upper limb amputation, quadruple amputee, environmental controls, quadrilateral amputation Date received: 3 August 2014; accepted: 5 March 2015
Background In June 2012, CX required quadruple amputation to save his life from a rare and rapidly progressing streptococcal infection that was causing ischaemic necrosis in multiple body systems. CX has bilateral transhumeral amputations and bilateral transfemoral amputations, all residual limbs being very short (Figure 1(a)). His upper limbs are not long enough to meet and provide no opportunity for opposition or stabilization of objects in daily tasks. Causes of quadruple amputation are usually congenital limb deficiencies, trauma (in particular electrocution) or advanced renal failure1 and are fortunately very rare. Quadruple amputations pose difficulties for every daily life task,2 the equivalent of a cervical spinal cord lesion. A study from Japan of 5527 cases of lower limb amputation over a 30-year period (1968–1997) reported the frequency of quadruple amputation to be just 0.02%.3 Recovery and rehabilitation following four-limb amputation is reported only in case study format in the literature due to the rarity of these circumstances.1,4–7 Resources for the quadruple
amputee are limited; hence, this case report is presented as a guide to current technology options for others. Tremendous advances in medical, surgical and rehabilitation care following amputation have occurred in the last 20 years8 as well as advances in electronics, computing and telecommunications technology. Technology is now integral to CX’s ability to move around his house and community independently, to control his environment (open doors and operate the lift to go upstairs at home), to communicate (via phone and computer) and to feed himself independently. The flexibility and integration of these technologies to be operated by CX in several different positions (e.g.
Mater Private Hospital Brisbane, South Brisbane, QLD, Australia Corresponding author: Deirdre M Cooke, Mater Private Hospital Brisbane, 41 Annerley Road, South Brisbane, QLD 4101, Australia. Email: [email protected]
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
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Prosthetics and Orthotics International
Figure 1. (a) Level of amputations, (b and c) power drive wheelchair lowered to floor level and at bed height for transfers (with osseointegration abutments from residual upper limbs in situ), (d) body-powered upper limb prostheses, (e) smart phone mounted to wheelchair, (f) hands-free speaker unit with voice activation, (g) mouth stick to operate tablet computer, (h) mouth stick to operate desk top computer, (i) joystick cup to operate wheelchair and (j) ‘Neater Eater’.
being able to operate the lights when either seated in the wheelchair or in bed) are essential to their functionality. Advanced technology has also added to the complexity of decision-making and integration of technology systems and solutions to work together to meet CX’s particular needs. Noteworthy also are the simple, ‘low-tech’ options to help meet the needs of a four-limb amputee.
Case description and methods Unilateral upper limb amputees and even bilateral upper limb amputees with residual limbs able to meet in the
midline or even bilateral upper limb amputees with intact lower limbs are often able to achieve complete independence in self-care tasks using adapted means.2,9 CX has very short, residual limbs on each side – above elbow upper and above knee lower limbs. He is able to ‘walk’ on his bottom indoors and transfer himself from one horizontal surface such as a bed to an equal height surface such a power drive wheelchair walking on his bottom (Figure 1(b) and (c)). He requires assistance to secure the seat belt of his wheelchair. Once in the power wheelchair he is independently mobile and able to control many elements of his environment. Control of the environmental temperature through
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
3
Cooke et al. air conditioning is essential for an amputee with multiple limb loss due to difficulty secondary to loss of skin surface through which to sweat.2 CX has been fitted with bilateral upper limb cable-operated body-powered prostheses with hooks (Figure 1(d)) and short bilateral lower limb body-powered prostheses. Due to the short length of his stumps, limited capacity to secure the prostheses, their weight and the assistance required to don and doff, neither the upper nor lower limb body-powered prosthetics added significant functionality to his daily routine. He is unable to dress, shower, feed or toilet himself using conventional prostheses. CX is currently undergoing osseointegration to provide bone implants or fixings for attachment of prostheses to his short stumps, with improved functionality the expected outcome.10,11 CX will be the first person ever to be fitted with four osseointegration prostheses. While CX’s technology needs and interfaces may change in the future, his capacity to control and maximally function in his environment through the use of technology at this point in time is the topic of this case study. Exemption from the need for full Mater Health Services human research ethics committee review was granted on the basis that the project concerns the reporting of a clinical case, and individual consent has been obtained from the affected parties. All authors contributed equally in the preparation of this manuscript.
Findings and outcomes Items of technology CX is currently using for computing and communication, mobility, home environmental controls and community access and self-cares include the following.
Computing and communication •• A smart phone mounted on the power drive wheelchair and paired with ‘Blueant’ hands-free speaker unit allows CX to operate the phone hands-free with voice activation (Figure 1(e) and (f)). This includes functions such as answering the phone, sending text messages and looking up the weather forecast. The ‘Siri’ knowledge navigator function of the Smart Phone allows CX to open email and navigate the scanning controls on the phone or tablet computer using a touch screen function with his stump. These technologies provide CX with fast and efficient communication and information acquisition despite his physical limitations. •• A tablet or desk top computer with touch screen functionality using a mouth stick is useful for many applications, but slower than other modes of computer use (Figure 1(g) and (h)). •• The voice recognition software on the computer helps fast and efficient electronic communication.
Mobility •• A power drive height-adjustable wheelchair – chosen to enable CX to transfer on and off surfaces of different heights including beds, chairs, toilets and also to the ground so he can move around on his bottom on the floor when interacting with his young children. •• The joystick used to operate the power drive wheelchair is a cup into which he inserts his left upper arm (Figure 1(i)). Joystick operation with left arm is personal preference for CX as he has sufficient range of motion in each arm for this function.
Home environmental controls and community access •• Infrared and Blue tooth are mounted on the wheelchair as a means of operating the computer mouse as well as home equipment including the television, DVD player and radio in a similar fashion to use of a television remote control. •• An electric lift has been installed in the double storey family home. Buttons to operate this are mounted at a height for control with his right stump. •• An electric bed that is both height- and tilt-adjustable and can both lift and tilt CX from lying to semisitting is used so that he can then sit himself upright to transfer to the power drive wheelchair. •• The house has a C-Bus system built in allowing CX control of the lights, automatic doors, air conditioners and electric louvres for ventilation and air control. He can operate these functions in a range of ways including nose-control of wall switches and through the tablet computer or smart phone when in bed and also control them when sitting at a computer or in the wheelchair. These systems help his function and safety.
Self-cares •• A ‘Neater Eater’ is a hydraulically operated system than enables CX to feed himself without the assistance of a second person. His wife describes this simple device as one of the most helpful items in their daily routine. It provides independence for CX, and an essential time-saving element of no longer needing a person to feed CX every mouthful of food at meal time in their busy household with four young children under the age of 10 years (Figure 1(j)). •• An electronic key pad/swipe system and electric doors allows CX to access his home. •• Vehicle modifications – The family vehicle has been modified to include a rear ramp for power drive wheelchair access allowing CX to travel in the community as a passenger with his family.
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
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Discussion Essential to the daily routine of CX and his family are multiple systems of technology ranging from low-technology (mouth stick and ‘Neater Eater’) through to high-technology installations (electric doors and computer technology). The capacity for CX to control as many functions as possible from both his bed and his wheelchair, for the various systems to integrate together and have adequate backup/ redundancy options at times of power failure were important considerations in the selection of each item. Integrated technologies enable CX to control elements of the environment such as answering the telephone, accessing information from the Internet or controlling a fan or air conditioning from a range of positions. Flexibility and integration of systems has been integral to technology adoption and lifestyle success. Selecting adaptive equipment, making modifications to the family home and acquiring technology to achieve maximal function and independence to meet CX’s changing needs throughout his recovery and rehabilitation, transition home and functioning in his household and community are ongoing and evolving processes. The process of sourcing and evaluating each item and integrating them with the other systems takes time and persistence, trials and errors along the way and ‘pushing the boundaries’. Key staff and services in this process have included Occupational Therapists, the LifeTec™ information and advisory service for the use of assistive technology, an Electrician experienced in home automation, various suppliers and product-specialists and the Internet. Material from a range of organizations including the Amputee Association, Spinal Injuries Association and Cerebral Palsy League as well as YouTube videos have been sources of ideas and inspiration on possible approaches to take on overcoming obstacles. CX’s approach to finding solutions to his needs has been one of ‘I want to do something. There must be a way!’. His perseverance and ‘pushing of the boundaries’ to seek technology options to meet his functional needs, to engage with a broad range of professionals and service-providers and to trial and evaluate all options logistically, functionally and financially have been integral to the process. The process of technology selection requires a clear understanding of the goals, needs and functional expectations of the client. In this instance, CX’s own engineering background has been an important asset in the process of evaluating options to overcome functional problems. Most of the technology solutions in CX’s life are in the realm of consumer electronics, commercially available, with the exception of the ‘Neater Eater’, and are not disability-specific products. Very few of them were on the market just 10 years ago, let alone readily available at reasonable consumer prices. An additional advantage of consumer electronics products is that they are cheaper and generally have more ongoing product
support. Technology has its limitations for able-bodied and people with disabilities alike. Needing multiple passwords for the various functions performed on a computer or on the Internet is harder and more time-consuming for users of voice dictation software. The ‘autofill’ feature of electronic forms as well as facial recognition software is of benefit to all, especially enhancing functionality for those using a mouth stick or voice dictation software. Resources to guide multiple limb-loss amputees, their families and health care teams are scarce. Recent additions to the literature have included guidelines for pre-prosthetic and prosthetic consideration by Davidson et al.2 in 2002, a detailed collation of information on resources and supports for those who have suffered combat-related amputation/s published in 201012 and the ‘Clinical Practice Guideline for the Management of Upper Extremity Amputation Rehabilitation’ from the United States in 2014.13 Previously published case examples of quadruple amputees overcoming challenges to independence have included descriptions and photographs of prosthetic customization and adapted techniques and equipment to facilitate greater independence and personal accomplishment. These case examples have included a young girl with congenital limb loss being able to dress herself,7 a 30-year-old male returning to skiing and trekking activities,4 a 52year-old male able self-propel a manual wheelchair and independently don prosthetics and a 62-year-old male able to feed himself, drive a car and self-inject insulin.1 Each person with quadruple limb loss faces unique circumstances, challenges, abilities and aspirations. All of the previously published cases of quadruple amputation have residual limbs longer than those of CX, and all but the young girl have residual upper limbs able to meet for opposition and object manipulation. It is recognized that CX’s needs and abilities will continue to change, and that his technology and other needs will be revisited as he acquires both upper and lower limb prosthetics through the highly advanced process of osseointegration over the next 12 months. CX’s goals of driving and greater independence in bathroom and kitchen tasks are still to be addressed once prosthetic fitting and training are complete and his future abilities are determined. His needs and goals are a constantly evolving process and cannot all be achieved at once. Technology helps CX to be useful and to perform important roles within the family such as grocery shopping online, keeping the daily school notices and diary up to date with the needs of his four children and managing the family banking and finances. Adoption of technology takes significant effort and time in planning, evaluation, implementation and, in many instances, financial resources. Creative problemsolving, persistence and innovation and ongoing developments in technology will bring about other solutions for CX and others like him in the future.
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
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Conclusion This case study reflects current needs and methods of enhancing function and life satisfaction for a unique case of quadruple amputation with very short residual limbs. Without technology, CX’s level of independence, mobility and quality of life would be greatly restricted and he ‘would most likely spend his days watching television and being cared for by others’. CX continues to be a productive member of his family and society. His own courage and persistence is leading the path for his future, and for others who may learn from his experiences, is a source of inspiration for many. Author contribution The authors contributed equally in the preparation of this manuscript.
Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This work received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
References 1. Yoshimoto K, Okuma Y, Nakamura T, et al. Limb fitting for quadruple amputees: report of two cases of symmetrical peripheral gangrene caused by pneumococcal purpura fulminans. Prosthet Orthot Int 2013; 37(6): 489–494. 2. Davidson JH, Jones LE, Cornet J, et al. Management of the multiple limb amputee. Disabil Rehabil 2002; 24(13): 688–699.
3. Chin T and Sawamura S. Status of amputees. In: Itoh T and Akai M (eds) Checkpoints for prosthesis and orthosis application. 7th ed. Tokyo, Japan: Igaku-shoin, 2008, pp. 42–43 (in Japanese). 4. Farley R, Mitchell F and Griffiths M. Custom skiing and trekking adaptations for a transtibial and transradial quadrilateral amputee. Prosthet Orthot Int 2004; 28: 60–63. 5. Garrison SJ and Merritt BS. Functional outcome of quadruple amputees with end-stage renal disease. Am J Phys Med Rehabil 1997; 76(3): 226–230. 6. Kitowski VJ, Pelosof HV and Leavitt LA. Comprehensive rehabilitation of a quadruple amputee. South Med J 1973; 66(7): 833–835. 7. Nelson KA and Friedmann L. Training a quadruple amputee to dress herself. J Assoc Child Prosthet Clin 1969; 8(11): 13–23. 8. Pasquina PF, Bryant PR, Huang ME, et al. Advances in amputee care. Arch Phys Med Rehabil 2006; 87(1): S34–S43. 9. Jones LE and Davidson JH. A review of the management of upper-limb amputees. Crit Rev Phys Rehabil Med 1996; 8(4): 297–322. 10. Hagberg K and Brånemark R. One hundred patients treated with osseointegrated transfemoral amputation prostheses – rehabilitation perspective. J Rehabil Res Dev 2009; 46(3): 331–344. 11. Jönsson S, Caine-Winterberger K and Brånemark R. Osseointegration amputation prostheses on the upper limbs: methods, prosthetics and rehabilitation. Prosthet Orthot Int 2011; 35(2): 190–200. 12. McFarland LV, Choppa AJ, Betz K, et al. Resources for wounded warriors with major traumatic limb loss. J Rehabil Res Dev 2010; 47(4): Appendix III. 13. Department of Veterans Affairs/Department of Defense. VA/DoD clinical practice guideline for the management of upper extremity amputation rehabilitation 2014, version 1.0, http://www.healthquality.va.gov/guidelines/Rehab/UEAR/
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
POI0010.1177/0309364615579316Prosthetics and Orthotics International X(X)Cooke et al.
INTERNATIONAL SOCIETY FOR PROSTHETICS AND ORTHOTICS
Case Report
Life without limbs: Technology to the rescue
Prosthetics and Orthotics International 1–5 © The International Society for Prosthetics and Orthotics 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0309364615579316 poi.sagepub.com
Deirdre M Cooke, Matthew Ames and Saul Geffen Abstract Background: This article reports a rare and inspirational case of a four-limb amputee, the range of integrated technology solutions that enable him to be a productive member of his family and the process and pitfalls of seeking technology solutions. Case description and methods: A complex case of bilateral transhumeral amputation and bilateral transfemoral amputation with residual upper limbs too short to oppose is presented. The multiple ‘high-tech’ and ‘low-tech’ devices used on a daily basis to move around his house and community, control his environment, communicate and feed himself without the use of limbs, prostheses or a second person are outlined. Findings and outcomes: Recent advances in electronics, computing and telecommunications technologies provide him with capabilities not possible 10 years ago. Conclusion: The process and pitfalls in sourcing technology solutions and the innovative solutions to meet the unique functional needs of this individual provide guidance to those with similarly severe and profound limitations to independence. Clinical relevance Descriptions of technology solutions to improve independent functioning of those with quadruple amputation without prostheses as well as those with high-level spinal cord injury are of value to occupational therapists, patients and families alike. Keywords Bilateral upper limb amputation, quadruple amputee, environmental controls, quadrilateral amputation Date received: 3 August 2014; accepted: 5 March 2015
Background In June 2012, CX required quadruple amputation to save his life from a rare and rapidly progressing streptococcal infection that was causing ischaemic necrosis in multiple body systems. CX has bilateral transhumeral amputations and bilateral transfemoral amputations, all residual limbs being very short (Figure 1(a)). His upper limbs are not long enough to meet and provide no opportunity for opposition or stabilization of objects in daily tasks. Causes of quadruple amputation are usually congenital limb deficiencies, trauma (in particular electrocution) or advanced renal failure1 and are fortunately very rare. Quadruple amputations pose difficulties for every daily life task,2 the equivalent of a cervical spinal cord lesion. A study from Japan of 5527 cases of lower limb amputation over a 30-year period (1968–1997) reported the frequency of quadruple amputation to be just 0.02%.3 Recovery and rehabilitation following four-limb amputation is reported only in case study format in the literature due to the rarity of these circumstances.1,4–7 Resources for the quadruple
amputee are limited; hence, this case report is presented as a guide to current technology options for others. Tremendous advances in medical, surgical and rehabilitation care following amputation have occurred in the last 20 years8 as well as advances in electronics, computing and telecommunications technology. Technology is now integral to CX’s ability to move around his house and community independently, to control his environment (open doors and operate the lift to go upstairs at home), to communicate (via phone and computer) and to feed himself independently. The flexibility and integration of these technologies to be operated by CX in several different positions (e.g.
Mater Private Hospital Brisbane, South Brisbane, QLD, Australia Corresponding author: Deirdre M Cooke, Mater Private Hospital Brisbane, 41 Annerley Road, South Brisbane, QLD 4101, Australia. Email: [email protected]
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
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Prosthetics and Orthotics International
Figure 1. (a) Level of amputations, (b and c) power drive wheelchair lowered to floor level and at bed height for transfers (with osseointegration abutments from residual upper limbs in situ), (d) body-powered upper limb prostheses, (e) smart phone mounted to wheelchair, (f) hands-free speaker unit with voice activation, (g) mouth stick to operate tablet computer, (h) mouth stick to operate desk top computer, (i) joystick cup to operate wheelchair and (j) ‘Neater Eater’.
being able to operate the lights when either seated in the wheelchair or in bed) are essential to their functionality. Advanced technology has also added to the complexity of decision-making and integration of technology systems and solutions to work together to meet CX’s particular needs. Noteworthy also are the simple, ‘low-tech’ options to help meet the needs of a four-limb amputee.
Case description and methods Unilateral upper limb amputees and even bilateral upper limb amputees with residual limbs able to meet in the
midline or even bilateral upper limb amputees with intact lower limbs are often able to achieve complete independence in self-care tasks using adapted means.2,9 CX has very short, residual limbs on each side – above elbow upper and above knee lower limbs. He is able to ‘walk’ on his bottom indoors and transfer himself from one horizontal surface such as a bed to an equal height surface such a power drive wheelchair walking on his bottom (Figure 1(b) and (c)). He requires assistance to secure the seat belt of his wheelchair. Once in the power wheelchair he is independently mobile and able to control many elements of his environment. Control of the environmental temperature through
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
3
Cooke et al. air conditioning is essential for an amputee with multiple limb loss due to difficulty secondary to loss of skin surface through which to sweat.2 CX has been fitted with bilateral upper limb cable-operated body-powered prostheses with hooks (Figure 1(d)) and short bilateral lower limb body-powered prostheses. Due to the short length of his stumps, limited capacity to secure the prostheses, their weight and the assistance required to don and doff, neither the upper nor lower limb body-powered prosthetics added significant functionality to his daily routine. He is unable to dress, shower, feed or toilet himself using conventional prostheses. CX is currently undergoing osseointegration to provide bone implants or fixings for attachment of prostheses to his short stumps, with improved functionality the expected outcome.10,11 CX will be the first person ever to be fitted with four osseointegration prostheses. While CX’s technology needs and interfaces may change in the future, his capacity to control and maximally function in his environment through the use of technology at this point in time is the topic of this case study. Exemption from the need for full Mater Health Services human research ethics committee review was granted on the basis that the project concerns the reporting of a clinical case, and individual consent has been obtained from the affected parties. All authors contributed equally in the preparation of this manuscript.
Findings and outcomes Items of technology CX is currently using for computing and communication, mobility, home environmental controls and community access and self-cares include the following.
Computing and communication •• A smart phone mounted on the power drive wheelchair and paired with ‘Blueant’ hands-free speaker unit allows CX to operate the phone hands-free with voice activation (Figure 1(e) and (f)). This includes functions such as answering the phone, sending text messages and looking up the weather forecast. The ‘Siri’ knowledge navigator function of the Smart Phone allows CX to open email and navigate the scanning controls on the phone or tablet computer using a touch screen function with his stump. These technologies provide CX with fast and efficient communication and information acquisition despite his physical limitations. •• A tablet or desk top computer with touch screen functionality using a mouth stick is useful for many applications, but slower than other modes of computer use (Figure 1(g) and (h)). •• The voice recognition software on the computer helps fast and efficient electronic communication.
Mobility •• A power drive height-adjustable wheelchair – chosen to enable CX to transfer on and off surfaces of different heights including beds, chairs, toilets and also to the ground so he can move around on his bottom on the floor when interacting with his young children. •• The joystick used to operate the power drive wheelchair is a cup into which he inserts his left upper arm (Figure 1(i)). Joystick operation with left arm is personal preference for CX as he has sufficient range of motion in each arm for this function.
Home environmental controls and community access •• Infrared and Blue tooth are mounted on the wheelchair as a means of operating the computer mouse as well as home equipment including the television, DVD player and radio in a similar fashion to use of a television remote control. •• An electric lift has been installed in the double storey family home. Buttons to operate this are mounted at a height for control with his right stump. •• An electric bed that is both height- and tilt-adjustable and can both lift and tilt CX from lying to semisitting is used so that he can then sit himself upright to transfer to the power drive wheelchair. •• The house has a C-Bus system built in allowing CX control of the lights, automatic doors, air conditioners and electric louvres for ventilation and air control. He can operate these functions in a range of ways including nose-control of wall switches and through the tablet computer or smart phone when in bed and also control them when sitting at a computer or in the wheelchair. These systems help his function and safety.
Self-cares •• A ‘Neater Eater’ is a hydraulically operated system than enables CX to feed himself without the assistance of a second person. His wife describes this simple device as one of the most helpful items in their daily routine. It provides independence for CX, and an essential time-saving element of no longer needing a person to feed CX every mouthful of food at meal time in their busy household with four young children under the age of 10 years (Figure 1(j)). •• An electronic key pad/swipe system and electric doors allows CX to access his home. •• Vehicle modifications – The family vehicle has been modified to include a rear ramp for power drive wheelchair access allowing CX to travel in the community as a passenger with his family.
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
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Discussion Essential to the daily routine of CX and his family are multiple systems of technology ranging from low-technology (mouth stick and ‘Neater Eater’) through to high-technology installations (electric doors and computer technology). The capacity for CX to control as many functions as possible from both his bed and his wheelchair, for the various systems to integrate together and have adequate backup/ redundancy options at times of power failure were important considerations in the selection of each item. Integrated technologies enable CX to control elements of the environment such as answering the telephone, accessing information from the Internet or controlling a fan or air conditioning from a range of positions. Flexibility and integration of systems has been integral to technology adoption and lifestyle success. Selecting adaptive equipment, making modifications to the family home and acquiring technology to achieve maximal function and independence to meet CX’s changing needs throughout his recovery and rehabilitation, transition home and functioning in his household and community are ongoing and evolving processes. The process of sourcing and evaluating each item and integrating them with the other systems takes time and persistence, trials and errors along the way and ‘pushing the boundaries’. Key staff and services in this process have included Occupational Therapists, the LifeTec™ information and advisory service for the use of assistive technology, an Electrician experienced in home automation, various suppliers and product-specialists and the Internet. Material from a range of organizations including the Amputee Association, Spinal Injuries Association and Cerebral Palsy League as well as YouTube videos have been sources of ideas and inspiration on possible approaches to take on overcoming obstacles. CX’s approach to finding solutions to his needs has been one of ‘I want to do something. There must be a way!’. His perseverance and ‘pushing of the boundaries’ to seek technology options to meet his functional needs, to engage with a broad range of professionals and service-providers and to trial and evaluate all options logistically, functionally and financially have been integral to the process. The process of technology selection requires a clear understanding of the goals, needs and functional expectations of the client. In this instance, CX’s own engineering background has been an important asset in the process of evaluating options to overcome functional problems. Most of the technology solutions in CX’s life are in the realm of consumer electronics, commercially available, with the exception of the ‘Neater Eater’, and are not disability-specific products. Very few of them were on the market just 10 years ago, let alone readily available at reasonable consumer prices. An additional advantage of consumer electronics products is that they are cheaper and generally have more ongoing product
support. Technology has its limitations for able-bodied and people with disabilities alike. Needing multiple passwords for the various functions performed on a computer or on the Internet is harder and more time-consuming for users of voice dictation software. The ‘autofill’ feature of electronic forms as well as facial recognition software is of benefit to all, especially enhancing functionality for those using a mouth stick or voice dictation software. Resources to guide multiple limb-loss amputees, their families and health care teams are scarce. Recent additions to the literature have included guidelines for pre-prosthetic and prosthetic consideration by Davidson et al.2 in 2002, a detailed collation of information on resources and supports for those who have suffered combat-related amputation/s published in 201012 and the ‘Clinical Practice Guideline for the Management of Upper Extremity Amputation Rehabilitation’ from the United States in 2014.13 Previously published case examples of quadruple amputees overcoming challenges to independence have included descriptions and photographs of prosthetic customization and adapted techniques and equipment to facilitate greater independence and personal accomplishment. These case examples have included a young girl with congenital limb loss being able to dress herself,7 a 30-year-old male returning to skiing and trekking activities,4 a 52year-old male able self-propel a manual wheelchair and independently don prosthetics and a 62-year-old male able to feed himself, drive a car and self-inject insulin.1 Each person with quadruple limb loss faces unique circumstances, challenges, abilities and aspirations. All of the previously published cases of quadruple amputation have residual limbs longer than those of CX, and all but the young girl have residual upper limbs able to meet for opposition and object manipulation. It is recognized that CX’s needs and abilities will continue to change, and that his technology and other needs will be revisited as he acquires both upper and lower limb prosthetics through the highly advanced process of osseointegration over the next 12 months. CX’s goals of driving and greater independence in bathroom and kitchen tasks are still to be addressed once prosthetic fitting and training are complete and his future abilities are determined. His needs and goals are a constantly evolving process and cannot all be achieved at once. Technology helps CX to be useful and to perform important roles within the family such as grocery shopping online, keeping the daily school notices and diary up to date with the needs of his four children and managing the family banking and finances. Adoption of technology takes significant effort and time in planning, evaluation, implementation and, in many instances, financial resources. Creative problemsolving, persistence and innovation and ongoing developments in technology will bring about other solutions for CX and others like him in the future.
Downloaded from poi.sagepub.com at FUDAN UNIV LIB on May 7, 2015
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Conclusion This case study reflects current needs and methods of enhancing function and life satisfaction for a unique case of quadruple amputation with very short residual limbs. Without technology, CX’s level of independence, mobility and quality of life would be greatly restricted and he ‘would most likely spend his days watching television and being cared for by others’. CX continues to be a productive member of his family and society. His own courage and persistence is leading the path for his future, and for others who may learn from his experiences, is a source of inspiration for many. Author contribution The authors contributed equally in the preparation of this manuscript.
Declaration of conflicting interests The authors declare that there is no conflict of interest.
Funding This work received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
References 1. Yoshimoto K, Okuma Y, Nakamura T, et al. Limb fitting for quadruple amputees: report of two cases of symmetrical peripheral gangrene caused by pneumococcal purpura fulminans. Prosthet Orthot Int 2013; 37(6): 489–494. 2. Davidson JH, Jones LE, Cornet J, et al. Management of the multiple limb amputee. Disabil Rehabil 2002; 24(13): 688–699.
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