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Safety aspects The casters should point to the front, in order to make sure the wheelchair does not tip over. Lock the brakes – in case the brakes do not work properly, the tires might lack air or the brakes could be bent. Fold out anti-tip wheels if available The wheelchair should always be positioned facing the bed at an angle, never parallel to the bed. Make sure the transfer board is placed horizontally in front of the wheel, not above the wheel. In order to protect the skin of the patient, you might use a wheel protection or small pillow. Try to adjust the height of the bed and wheelchair as even as possible. Transfer wheelchair to bed 1 Remember The feet of the patient should be touching ground (footrests of the wheelchair, floor etc.) – this helps carry the body weight. When transferring, it is important to lean forward until the buttocks are relieved. The head faces the bed and the buttocks slide down towards the wheelchair. Transfer wheelchair to bed 2 What do I need to consider with regard to the shoulders? The shoulder is the most heavily loaded joint with regard to mobilization – that applies to sitting up and transferring. It is therefore important to protect the shoulders whenever it is possible, e.g. the patient should never be pulled on his/her arms to help him/her sit up or should not pull himself/herself up with a trapeze or a bar. How can other people help with transferring? When transferring, caregivers should stand in front of the wheelchair, in order to be able to react immediately in case the patient loses his/her balance and falls. It is important not to restrict the mobility, and therefore independence of the patient, by standing too close. Important Poor transferring bears a high risk of injury, e.g.: skin damages shear forces, which can cause skin cracks abrasions injuries affecting the deeper layers of skin, that can cause pressure sores falls with health consequences bruises, abrasions, contused lacerations fractures FAQs Why should I never allow anybody to pull on my hands to help me sit up? This movement is harmful to your health and the health of the caregiver – this way, your shoulders are heavily loaded which can cause serious long-term damage. For the caregiver, this could result in back problems. When sitting up this way, you are not able to assist, and therefore also not able to control your movements. When someone helps me with transferring while travelling, people always lift me by putting their arms under my shoulders – this causes me shoulder pain. What should I do? When being lifted it is important to press down your shoulders in order to stabilize them. If you cannot do this or already have problems with your shoulders, never allow anybody to lift you up by putting his/her arms under your shoulders! In this case, a gait belt can help. A gait belt is a wide belt, equipped with lifting handles, that is put tightly around your waist and enables the caregiver to lift you up without straining your shoulders. About the author: Christa Schwager is a specialist in movement science in the Department for Nursing Development and Education at the Swiss Paraplegic Centre in Nottwil/Switzerland, where she has worked since 1994. She is co-author of the key publications in the field of spinal cord injury "Paraplegie. Ganzheitliche Rehabilitation" (eds. Guido A. Zäch & Hans Georg Koch) and "Pflege von Menschen mit Querschnittlähmung" (ed. Ute Haas). updated: December 2013
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Particularities of the skin in people with spinal cord injury (SCI) The skin of the disabled body parts is more likely to dry out since the skin glands do not function properly. Tetraplegics might experience vegetative perspiration (as a sign of malfunctioning of the body) since temperature regulating perspiration is not possible any more. Due to the lack of sensitivity or reduced sensitivity, the risk of injury through mechanical or chemical irritation (burns, frostbites) is increased. What needs to be considered regarding skin care? Rinse off washing lotion and soap well with clear water since the skin will dry out otherwise. All washing lotions degrease the skin and irritate the acid shield of the skin. A pH-neutral liquid soap helps to regenerate the natural acid shield of the skin faster. Body lotion should not be put on directly after washing the body but delayed. Normal skin does not need lotion every day. Intimate care should be performed every day. In case of a permanent catheter or fungal infection, intimate care needs to be performed twice daily (AM and PM). The skin needs extra protection during the summer months – apply sun screen with a high sun protection factor. Nail care Careful nail care is very important. Infected or ingrown nails occur frequently in people with SCI. It is recommended to have regular pedicures done. Skin control and relief In order to recognize pressure sores, erythema and changes such as fungal infections at an early stage, it is important to check the skin regularly. Due to a lack of sensitivity, changes are often recognized very late. It is therefore even more important to observe carefully to be able to react quickly. For more information on how to check the skin read the chapter about “Pressure Sores/Decubitus“. FAQs Would it be better to use specific skin care products? It is rarely necessary to use specific skin care products. When buying a body lotion, it is recommended to choose one of the more greasy ones. In case of very sensitive skin, the following washing lotions are recommended: Lactacyd Derma Pruri-med Der-med What can I do if I am perspiring profusely? Regular personal hygiene and drying the skin properly with a towel are important. We recommend talking to your GP. About the author: Karin Gläsche is an expert in wound care and stomata in the Department for Nursing Development and Education at the Swiss Paraplegic Centre in Nottwil/Switzerland, where she has worked since 1999. She is co-author of the key publication in the field of spinal cord injury "Paraplegie. Ganzheitliche Rehabilitation" (eds. Guido A. Zäch & Hans Georg Koch). updated: December 2013
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The hands are gripping the handrim and propelling the wheels forward with pressure - day by day, year by year. This is the normal way many wheelchair users are usually moving around and half of them are suffering from pain caused by daily mobility. The causes are manifold and it is often unclear what exactly causes it. The research team of the group “Shoulder Health and Mobility" of Swiss Paraplegic Research (SPF) pursues the approach that the shoulder load during wheelchair propulsion is too high and therefore can cause injuries. In several studies scientists were examining whether the wheelchair or the handbike is better suited to minimize the shoulder load and what the optimal settings of the handbike are. Five out of ten people with spinal cord injury (SCI) suffer from shoulder pain. The significance of this number becomes clear when compared with the general population where only two out of ten people report shoulder problems. In people who can walk, the biggest and strongest muscles and joints of the legs are responsible for mobility. In people with SCI, it is the shoulders that take care of it. It is therefore not surprising that shoulder pain is a common condition. It is often unclear what the exact reason for shoulder pain is. Often several factors come together: It is possible that the individual anatomy of the shoulder is favourable for shoulder injuries, that movements are not carried out optimally or that specific activities cause a load on the shoulder that is too high. What was the research question that the researchers asked themselves? The repetitive propulsion of the wheelchair is often reported as one of the most important reasons for shoulder pain. The researchers therefore examined in a first study whether other means of transportation, such as the handbike, are better suited to cover longer distances. An individual adaptation is very important since the motion sequences can be optimized and the load can be minimized. Numerous studies on the adaptation of the wheelchair are already available; however, studies on the handbike are still scarce. The scientists therefore wanted to clarify in a second study how the handbike should be set up to keep the shoulder load at a minimum. How can the shoulder load be measured? In both studies 26 wheelchair users participated. During the tests with the wheelchair and the handbike, the test subjects were analysed using the help of various devices: The movements of their arms, hands and upper body were recorded and depicted three-dimensionally. The strength applied was measured by sensors inside the handles of the handbike and in the handrim of the wheelchair. This shows which means of transportation requires more strength. Furthermore by means of an EMG (electromyogram) it was analysed when the individual muscles are active and how much. This provides information whether certain muscles are overused and whether there is the risk of over-exertion or overload. With a breathing mask the breath was analysed and the oxygen consumption during the tests was measured. This way it can be determined which of the two devices the test person can use more efficiently and therefore use less energy. All the results were entered into a model which is used to calculate the force in the shoulder joint and in the individual muscles. This is currently the most accurate method to determine the load on the joints. Test setup Wheelchair or handbike In the comparative study, the test subjects used the wheelchair as well as the clip-on handbike at the same performance on the treadmill. The clip-on handbike is a unit consisting of an additional wheel and hand crank that is attached to the regular wheelchair that is used every day. The results show that the load on the shoulder joint when using the wheelchair is higher. The maximum joint force when using a wheelchair compared with a handbike is twice as high. The highest forces were measured in the middle of the propulsion phase when using the wheelchair, whereas the strongest forces when using the handbike were measured when lifting the crank. Also the average values of the forces measured throughout a complete cycle (one crank rotation on the handbike; propulsion and return phase on the wheelchair) are lower when using a handbike. Force on shoulder joint at a power of 55 watt Especially the muscle of the rotator cuffs, which stabilise the shoulder joint, are afflicted more heavily. If the wheelchair is propelled for longer periods, the risk of over-exertion of these muscles is higher which may lower their ability to protect the shoulder joint optimally and make it prone to injury and pain. The study confirmed the results of other research groups: The handbike is more efficient than the wheelchair, e.g., the same performance requires less energy. Optimal setting of the handcycle The settings of the handbike have been examined in previous studies. The goal was not minimizing the shoulder load but maximizing the performance. To reach a possibly high performance, the results of the studies suggest the following: The crank should be positioned below the shoulder, the optimal crank length is 18 cm and the handles should be positioned shoulder-width apart and with an inclination of 30° (hands inclined toward the inside 30°). The topic of the studies presented here was the shoulder load, therefore the study participants of the second study went at the same performance but with different settings of the recumbent handbike. Compared to the clip-on handbike, the recumbent handbike is a separate sports device where the user is lying and closer to the ground. The angle of the backrest (15°, 30°, 45° and 60°) as well as height and distance of the crank position were varied. The results of the study clearly show that an optimal position of the back rest is upright (angle of the back rest = 60°). With this setting, not only the force on the shoulder joint but also the load on the shoulder muscles (rotator cuffs) is the lowest. The lower the back rest is set, the higher is the shoulder load. Since the test was carried out on an ergometer, the air resistance could not be taken into consideration. If sitting in an upright position, this resistance increases and therefore limits the speed, which is not ideal especially for competition athletes. For recreational athletes, who are not focusing on the speed, it is recommended sitting upright if possible. The results of the crank height show that there is no difference between whether the crank axes is placed below, above or at shoulder level. The crank distance, however, is essential: If the crank is positioned closer, the shoulder load increases. The crank should therefore be set in a way that the elbow is only slightly angled (15°) but at no point fully stretched. Conclusion To minimise an overload of the shoulder, the hand bike should be used for longer distances and not the wheelchair. It should be used in an upright sitting position and with a distanced crank position. Source: Paracontact 1/2013, Swiss Paraplegics Association updated: December 2013
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The supine position is known as standard position - however, there are alternative positions that are useful or sometimes even necessary for decompression. Why does repositioning make sense? Lasting pressure put on the same parts of the body, when lying on them for a long time, increases the risk of pressure sores. Lateral and prone positions are very suitable for completely decompressing the buttocks skin that is particularly stressed by prolonged sitting. This way, the heels are relieved, too. Different positions can prevent contractures (contractions of muscles, tendons or ligaments). To extend joints that were angled while sitting (hips, knees) prevents movement restrictions. Lying in one position over a long period of time causes tension within the body (spasticity/spasms). Why should the upper end of the bed only be elevated minimally or for a short period of time? When elevating the upper end of the bed, the patient slides down - this causes shear forces that affect the buttock skin. The skin is heavily strained and pressure ulcers can occur. Prolonged sitting on the bed increases the pressure put on the coccyx and the buttocks, which may also cause pressure sores. What should be taken into account when choosing a mattress? The mattress needs to meet the individual needs. relevant criteria: skin condition, pain, possibility of being helped by others when repositioning in bed (especially at night) Soft mattresses make mobilization and repositioning more difficult. The mattress needs a solid edge to ensure safe transferring. Important It is important to check the effects of all positions on the skin. Areas of particular risk are those covering the bones: buttocks coccyx hip bone pelvic bone foot heels ankles toes (prone position) knees (prone position) elbows Decompressing positions Lateral position Aims: decompression of vulnerable skin areas relaxation Please note: use as little material as possible when positioning the patient ensure a relaxed body posture Frequency of repositioning: up to several hours Suitable material: positioning roll pillows towels Lateral position Prone position Aims: decompression of vulnerable skin areas relaxation avoiding contractures (muscle contractions) Please note: check vulnerable skin areas (iliac crest, knee, toes etc.) monitor breathing when positioning people with quadriplegia Frequency of repositioning: up to several hours Suitable material: positioning roll pillows towels Prone position 1 Prone position 2 Frog leg/cross-legged position Aim: reducing spasms/spasticity Please note: support legs in order to avoid additional tensions elevation of torso leads to further relaxation; attention: shear forces - risk of pressure sores! check vulnerable skin areas (heels, feet, buttocks etc.) Frequency of repositioning: 30 minutes to 2 hours Suitable material: positioning roll pillows towels Frog leg/cross-legged position Stretched upper body position Aim: regulation of body tension Please note: torso turned in opposite direction to the bent legs Frequency of repositioning: each side 5-10 minutes to prepare for personal hygiene, mobilization etc. Suitable material: maybe small pillow between the knees Stretched upper body position About the author: Christa Schwager is a specialist in movement science in the Department for Nursing Development and Education at the Swiss Paraplegic Centre in Nottwil/Switzerland, where she has worked since 1994. She is co-author of the key publications in the field of spinal cord injury "Paraplegie. Ganzheitliche Rehabilitation" (eds. Guido A. Zäch & Hans Georg Koch) and "Pflege von Menschen mit Querschnittlähmung" (ed. Ute Haas). updated: December 2013
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I'm having a baby – what should I do? Women with spinal cord injury wish to have children just as much as women without disabilities do. However, a pregnancy raises many additional questions: Is there anything special I have to bear in mind during my pregnancy being a paraplegic woman? How can I take care of my child as independently as possible? Are there any tools that make life with a baby easier for me? The following websites, books and documents can provide answers to these questions. Furthermore, brief Youtube videos show tricks that paraplegic women have come up with in order to take care of their child as independently as possible. Forums and websites http://www.lewu.de/ (in German) (last visited on October 01, 2014) Informative website including a forum for women with disabilities and chronic diseases focusing on topics such as partnership, sexuality, desire to have children, pregnancy, child birth and life with children. http://www.disabledparents.net/ (in English) (last visited on October 01, 2014) Informative website for impaired parents providing recommendations concerning books and professional articles. http://www.apparelyzed.com/forums/forum/29-parents-in-wheelchairs/ (in English) (last visited on October 01, 2014) Forum on the issue of „parents in a wheelchair“. http://www.rolli-wegweiser.at/rww/1020.html (in German) (last visited on October 01, 2014) Two mothers with spinal cord injury talking about their pregnancies. The website also provides information concerning the subject of fatherhood. http://www.elternclubschweiz.ch/artikel/eltern-mit-behinderung (in German) (last visited on October 01, 2014) Three impaired mothers (hearing impairment, visual impairment and multiple sclerosis) report about their family lives. http://www.myhandicap.ch/familie-kinder-ch.html (in German) (last visited on October 01, 2014) Informative website on issues such as handicapped mothers/fathers, pregnancy of women with spinal cord injury and sexuality. Videos Ali puts a Baby in the front car Uploaded by parentsinwheelchairs on August 15, 2011 Downloaded from http://www.youtube.com/watch?v=HjxcK_L4MFw&feature=plcp (last visited on October 01, 2014) Ali shows us the adapted cot they used for Sarah Uploaded by parentsinwheelchairs on April 14, 2011 Downloaded from http://www.youtube.com/watch?v=usEWK7Dir2I (last visited on October 01, 2014) Ali shows us the changing table she used Uploaded by parentsinwheelchairs on April 14, 2011 Downloaded from http://www.youtube.com/watch?v=hy3pbE0RV1A&¬feature=context-cha (last visited on October 01, 2014) Bernie puts Jasper in the car Uploaded by Bernadette Nolan on October 26, 2011 Downloaded from http://www.youtube.com/watch?v=GlqyUBNl3ng (last visited on October 01, 2014) Jasper's Power Cot Uploaded by Bernadette Nolan on November 4, 2011 Downloaded from http://www.youtube.com/watch?v=jjp7gxqVfRE (last visited on October 01, 2014) Picking Jasper Up Uploaded by Bernadette Nolan on October 26, 2011 Downloaded from http://www.youtube.com/watch?v=g9TIu48Y8-k (last visited on August 13, 2013) Picking up Jasper (10 months old) Uploaded by Bernadette Nolan on May 5, 2012 Downloaded from http://www.youtube.com/watch?v=3HkxdA9LCx4 (last visited on October 01, 2014) Jasper has a shower Uploaded by Bernadette Nolan on May 11, 2012 Downloaded from http://www.youtube.com/watch?v=T3ud0dj3Z8E (last visited on October 01, 2014) Mutter auf Rädern – Ein Jahr mit Edith Hunkeler und ihrer Tochter Elin (Mother on wheels – One year with Edith Hunkeler and her daughter Elin) (in German) Uploaded by „Swiss Radio and Television“ (SRF), Title of the show „Reporter“ broadcast: November 6, 2011 Downloaded from http://www.srf.ch/player/tv/reporter/video/mutter-auf-raedern-ein-jahr-mit-edith-hunkeler-und-ihrer-tochter-elin?id=07fad363-7172-4966-846c-c5fa48340931 (last visited on October 01, 2014) Books & documents The Disabled Woman's Guide to Pregnancy and Birth Rogers, J. (2006). Demos Medical Publishing: New York Practical guide on pregnancy and birth for disabled women based on the experiences of 90 affected women. The Baby Challenge – A handbook on pregnancy for women with a physical disability Campion, M.J. (1990). Routledge: London Informative manual for women with physical disabilities in order to prepare for motherhood. Sexuality After Spinal Cord Injury: Answers to Your Questions Ducharme, S.H. & Gill, K.M. (1996). Brookes Publishing Co. Questionnaire discussing subjects such as sexuality, fertility, contraception and sexually-transmitted diseases. Including a basic introduction. Spinal Cord Injury and the Family: A new guide Alpert, M.J. & Wisnia, S. (2008). Harvard University Press: Cambridge, Massachusetts Including chapters addressing the issues of “Fertility and Pregnancy", “Parenting with SCI" and a variety of other issues concerning SCI. Past Due: A Story of Disability, Pregnancy, and Birth Finger, A. (1990). Seal Press (CA) Touching report of a woman who caught polio as a child. About parental love and the right of disabled people to have a child. Zur Situation körperbehinderter Frauen – Sexualität, Partnerschaft, Mutterschaft [Thesis, German] Kück, B. (2005) (ISBN 978-3638444200) This thesis wants to elucidate the situation of women with a disability, especially with regard to topics like sexuality, relationships and motherhood. Mutterglück trotz körperlicher Behinderung – beschrieben am Beispiel der Querschnittslähmung [Thesis, German] Bachmann, A. & Loosli, B. (2002) (Last visited on October 01, 2014) A shortened version of the thesis was published in the „Hebammenzeitschrift“ and can be downloaded for free: http://www.hebamme.ch/x_data/heft_pdf/2004-02-04.pdf Sexuality and Reproductive Health in Adults with Spinal Cord Injury: What You Should Know – A Guide for People with Spinal Cord Injury Paralyzed Veterans of America (2011) Downloaded from http://www.pva.org/atf/cf/%7BCA2A0FFB-6859-4BC1-BC96-6B57F57F0391%7D/WHAT%20YOU%20SHOULD%20KNOW.PDF (last visited on October 01, 2014) For people with spinal cord injury. Informative guide about sexuality of men and women with SCI. Also deals with the issues of pregnancy and birth. Sexuality and Reproductive Health in Adults with Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals Paralyzed Veterans of America (2010). The Journal of Spinal Cord Medicine, 33(3), 281-336 For healthcare professionals working in the field of SCI. A guide that seeks to inform, sensitize and open up our society for the subject of sexuality. Pregnancy Complicated by Maternal Paraplegia or Tetraplegia as a Result of Spinal Cord Injury and Spina Bifida Demasio, K. & Margriples, U. (1999). Sexuality and Disability, 17(3), 223-32 Provides information about possible complications before, during and after giving birth by women with SCI. About the author: Christa Schwager is a specialist in movement science in the Department for Nursing Development and Education at the Swiss Paraplegic Centre in Nottwil/Switzerland, where she has worked since 1994. She is co-author of the key publications in the field of spinal cord injury "Paraplegie. Ganzheitliche Rehabilitation" (eds. Guido A. Zäch & Hans Georg Koch) and "Pflege von Menschen mit Querschnittlähmung" (ed. Ute Haas). updated: October 2014
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A comprehensively designed living space is a fundamental need and it influences the individual's quality of life immensely. In order to be independent, it is essential that structural barriers are removed and avoided for persons with spinal cord injury (SCI). The first step towards eliminating structural barriers for persons with SCI is an on-site evaluation of the living space. This means that the needs of this person are determined precisely, the available building structure is evaluated, and initial suggestions for adaptations are discussed. Normally these discussions take place together with the advised person, his/her family, possibly representatives of the housing administration, occupational therapist as well as specialists from architecture and assistive equipment consulting. On-site evaluation of living space Individual adaptations Each living space is different regarding the environment as well as the individual needs. A rental apartment may hold completely different solutions than a condominium or a single family home. Also social criteria play a big role: a young and single male with walking impediment has different priorities than a mother with a complete paraplegia and small children. Aside from the available building structure, which must be considered when making adaptations to the living space, are therefore personal and disability-related aspects of the resident, e.g.: What is the degree of independence? Which activities will the resident really be able to perform independently? Do they live alone or with family? What are their tasks within the family (e.g. housekeeping, profession)? For how long will he stay in this apartment? Should the apartment also be suitable for old age? These questions result in a variety of different requirements for the adaptation of living space. It is therefore important to have a detailed knowledge of the situation for the future resident. He and all necessary experts have to be involved early on in order to define the correct structural measurements. This equals the approach of a comprehensive planning and building process. Planning and cost determination After the on-site evaluation of the living space, the current situation and the discussed suggestions for the adaptation by the consultant for barrier-free building are written down in a protocol and documented in blueprints if necessary. In case of rental apartments, it is mandatory to get the home improvements approved by the property management or the owner. The following step is most essential: the required costs for structural adaptations are determined with the help of bids. The work that needs to be done is discussed with the respective companies on-site. Through the offers, a detailed cost estimate is prepared. It is important that the disability-related costs (for simple and appropriate adaptations are separated from other costs (for additional requests) since in Switzerland only disability-related costs are covered by the disability insurance. This offers the clients a basis for any decision regarding the financing options for the planned home adaptations. Frequent home adaptations Depending on the initial situation, the following necessary adaptations may include (the list is not conclusive): Differences in height Removing door steps or installing fixed or mobile ramps Installing wheelchair accessible ramps, lifting platforms, ceiling lifts, stair lifts or elevators for overcoming bigger differences in height Indoor stair lift Outdoor stair lift Openings Enlarging or exchanging doors Adapting types of openings or fittings Automating doors, windows and shutters Kitchen Adapting the kitchen combination (legroom underneath furniture, accessibility) Adapting devices and faucets (usability) Adapting furniture (work surface) Height-adjustable kitchen Bathrooms and toilets Adapting bathrooms, showers and washrooms Replacing sanitary appliances Enlarging manoeuvring areas Installing barrier-free showers, bath lifts, ceiling lifts and height-adjustable appliances Mounting of holding rods and supplementary handles Applying various other aids (e.g. flip-up seat in the shower) Sink with leg room Other rooms Adaptation of the moving surfaces Changes in furniture Installing ceiling lifts Improving accessibility and handling of the wardrobes Adapting parking spots and garages Ceiling lift Electrical installation Adaptation of switches, power plugs, power box as well as control panels for a better operability Smart home Installation of electrical systems (environment control with "James" control device, tablet etc.) for controlling and remote-controlling of structural elements such as lighting, elevator, fittings, doors, intercom system but also of electrical devices such as TV, radio, computer etc. Floor coverings Adapting or replacing coverings that are too soft, too uneven, or not anti-skidding Verification of financing A living space adaptation cannot be realized without the necessary financial means. In order to get the financing for a wheelchair-accessible adaptation, some specialized rehabilitation clinics offer financial means-testing. Occupational therapists of the clinic forward the list of disability-related costs with a written statement about the living space adaptation as well as a protocol about the financial verification to the insurance in charge. Persons affected who were not rehabilitated at a rehabilitation clinic are themselves responsible for getting their financial means tested and submitting their application to the insurance. For persons who are not able to do so, disability organizations offer support with the financial means-testing and could possibly offer financial support. Depending on the insurance, a longer period of time may pass until a final decision is made. Therefore if an adaptation of living space is urgent (e.g., for persons with SCI who return home after first rehabilitation), the construction costs need to be pre-financed by either disability organizations, foundations or the affected persons themselves. This allows for the adaptations to be realized and the craftsmen be paid on time. After confirmation by the insurance, the expenses will certainly be reimbursed. If an affected person is not eligible for coverage by the insurance, other financing options are investigated with the help of social counseling or disability organizations. Center for Obstacle-free Building in Switzerland Like any construction project, disability-related adaptations of living space for persons with SCI have to be planned and realized carefully. It is therefore highly recommended to involve architects, construction managers and contractors who are familiar with this topic. In Switzerland, the Centre for Obstacle-free Building of the Swiss Paraplegics Association (SPV) offers comprehensive advice and support with respect to all questions regarding the adaptation of living space. Further information can be found here: Swiss Paraplegics Association, Centre for Obstacle-free Building, CH-5037 Muhen; URL: http://www.spv.ch/en/what_we_do/center_for_obstacle-free_building/ Manual "Hindernisfreies Bauen", Swiss Paraplegics Foundation (Hrsg.), ISBN 3-033-00378-8, CHF 50.00 (available in German and French); German URL: http://www.spv.ch/de/publikationen/hindernisfreies_bauen/; French URL: http://www.spv.ch/fr/publications/construire_sans_obstacles/ Download free of charge "Mindestanforderungen" from the manual "Hindernisfreies Bauen" (available in German and French); German URL: http://www.spv.ch/__/frontend/handler/document.php?id=756&type=42; French URL: http://www.spv.ch/__/frontend/handler/document.php?id=758&type=42 About the author: Felix Schärer has a degree in architecture and became the divisional director for the Centre of Obstacle-free Building at Swiss Paraplegics Association (SPV) in 2005. updated: July 2016
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The arms and hands of wheelchair users are taking over most leg functions. Therefore, it is important to take care of them as well as to train and use them as much as possible from the beginning. Aspects of optimal rehabilitation of the upper limbs: positioning of the upper limbs functional hand functional training and activities of daily life (ADL) functional electrical stimulation robotics surgeries for functional improvements Positioning of the upper limbs For tetraplegic persons, the positioning in bed as well as in the wheelchair is of vital importance directly after the occurrence of the injury. Dependent on the level of the injury and the level of innervation, an individually adapted positioning system is being defined. Goal of the positioning is contraction and pain prophylaxis. Functional hand The training of functional hands is essential when treating tetraplegics in the early stages. Goal of the positioning is to reach the optimal length of muscles, tendons and ligaments which permits the tenodesis effect. Specialized positioning results in an intentional shortening of the finger flexion muscles and may prevent from developing a "flat or claw hand". The functional hand enables grasping using only one hand, even without an existing finger musculature. Functional training and activities of daily life (ADL) Throughout the initial rehabilitation, learning to coordinate the use of arm and hand as well as to use the functional hand is fostered intensively by applying functional training. If one function is missing, substitution strategies are developed for compensation. Neurological therapeutic treatment concepts such as Bobath or PNF stretching (proprioceptive neuromuscular facilitation) could also be included in the treatment. Bobath PNF stretching (proprioceptive neuromuscular facilitation) By carrying out activities of daily life such as eating, writing, opening letters, etc., various movements are being trained. Often it is necessary to use mechanic tools and aids, some of which are developed on an individual basis (e.g. by the occupational therapist or in the orthopaedic workshop). Applying them is part of the intensive training. Adapted aids and tools: fork, spoon, key Functional electrical stimulation Functional and therapeutic electrical stimulation (FES) is a technology that, by using electrical impulses via the nerve, it indirectly affects the muscle. Electrical stimulation may have a supportive effect on muscle strength or may enable a new functional equilibrium in order to render possible grasping between the flexing and stretching hand muscles. Functional electrical stimulation (FES) Robotics Robotics such as e.g. ArmeoPower or ArmeoBoom are supplementing the range of available therapeutic possibilities. Repetitive and task oriented therapeutic exercises are supposed to restore motor skills. In doing so, the tools only have supporting function when the force is not sufficient. Robotics are increasing the scope of activities and are training strength and perseverance. Some of the therapeutic sessions can be conducted independently; however, the installation as well as the removal of the robotics and the consistency of physiological movement processes should be supervised by a therapist. ArmeoPower (front view) ArmeoPower (back view) Surgeries for functional improvements Loss of functioning in the arms and hands with direct influence on independence are of utmost importance for tetraplegics' quality of life. Through surgery it is possible to restore functions partially. During the hand consultation in a specialised clinic or rehabilitation centre, an interdisciplinary team (tetra hand surgeon, paraplegiologist, physio and occupational therapist) examines the neurological, functional and psychological aspects and possibilities for surgery are suggested and discussed. Since musculature and sensibility might change significantly in the first year after the trauma, possible surgical interventions are usually conducted only after one year. updated: January 2015
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In case of a spinal cord injury, the lesion level, i.e. the part where the spinal cord is injured, has a crucial meaning: depending on where this part is exactly located, it determines the functional options, i.e. which activities the injured persons will be able to do at the end of the rehabilitation process and for which ones they will be dependent on support. It also determines which assistive devices they will need in everyday life. The following table gives an overview of which lesion level allows for which degree of independence with respect to everyday life activities such as driving a car, housekeeping, body hygiene, eating and drinking, etc. The last column lists possible and recommended assistive devices as well as possible necessary measures for adapting apartment and environment of the persons affected. Other factors are obviously responsible for the degree of independence, e.g. age and whether the lesion is complete or incomplete. Therefore the list of data below, which refer to complete lesions, is to be considered as orientation aid only. Table_E.pdf updated: July 2014
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To perform household tasks can be a big challenge for people with a spinal cord injury (SCI): cooking, doing the dishes and laundry, but also opening packages with only limited arm/hand function. A tetraplegic person with a complete lesion at the level C1-C4 is fully dependent on assisting people. People with a lesion level of C6-C8 can perform certain activities independently, like preparing simple meals or doing easy household tasks. People with a paraplegia are also able to carry out more difficult and more demanding tasks, e.g. hoovering, cleaning the bathroom, swiping the floor, and putting clean sheets on the beds. However, this requires a lot of time and energy. Furthermore, it is important that the household tools are easily accessible. Here are a few potential assistive devices and aids: anti-slipping pad for bowl and cutting board adapted handles e.g. for knifes and potato peelers cutting board or serving tray with balance bag, e.g. for moving hot pots and pans sweepers with long rod cordless hoover or hoovering robot gripping tongs serving trolley Cutting board with anti-slipping pad and knife with adapted handles Cutting board with balance bag The housing environment should be suitable for wheelchairs: sufficient space to move around accessible kitchen sink and cooker (if possible) fridge, freezer, oven, and steamer should easily be accessible without the risk of getting burned table or kitchen boards should be installed at the ideal height to make it easier to prepare meals the buttons of the extractor hood should be easily accessible (touchscreen if applicable) kitchen furnishings: Lighter items (e.g. herbs) can be stored higher up than heavy items (e.g. pots). Drawers are generally more efficient than cupboards, because objects of choice don't have to be retrieved from the back. The handles of the cupboards should be individually adapted with regard to size, depth and form so that grasping them is also possible in case of limited hand function due to the paralysis. The opening direction of doors - e.g. of the cupboard or fridge - should be individually adapted. The door of the washing machine should open to the front (front loader) and not to the top (top loader). If the base of the machine is too high, the tray for the washing detergent might not be accessible. Washing lines should be height adjustable or you should have a separate drying rack. Keep in mind that you might burn non-sensitive body parts when touching non-isolated drains or pipes. Accessible kitchen sink Heigth-adjustable kitchen updated: July 2014
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Wheelchair users are almost as mobile as people without a disability, at least in Europe and North America. But when it comes to travelling Africa, certain regions of Central and South America as well as some Asian countries, a traveller with a spinal cord injury might have to lower her or his sights with regard to comfort and accessibility. However, the sometimes deficient infrastructure is compensated by the tremendous willingness to help of the locals. The only challenge that might remain is the language barrier for guiding the highly motivated helping hands with regard to purposeful interventions. Street in Bhaktapur/Nepal Therefore it should be a part of every holiday preparation to gather sufficient information about accessibility of your means of transportation (and hotels). The Swiss Paraplegic Association offers fact sheets for many situations on their website (www.spv.ch/en/publications/leaflets). Some are available also in English, others only in German and French. Depending on the means of transportation, various problems can occur in different parts of the world. This article therefore focuses on the possibilities and limits of travelling with spinal cord injury (SCI) according to different means of transportation. An article on travelling by airplane will be published in the library shortly. Travelling in a wheelchair The wheelchair is only rarely used as a means of transportation for longer distances. However, there are people who are “on the road" for weeks with their wheelchair: a friend of Dr_Hans (doctor online on paraforum) for example travelled along the river Danube, from its well to Budapest, only with a backpack, sleeping bag and a little bit of supplies. That for sure is only for the adventurous! Therefore we recommend to define support stations along the route to make it easier to organise help quickly in cases of technical defects or health problems. A mobile phone should always be close by and charged sufficiently (bring an outdoor charger along!), because it might happen that you fall out of your wheelchair and need help. Good equipment for bad weather conditions is also a must: a rain jacket, protective foil for the feet, and waterproof gloves. In addition, tools and tyre repair kits should also go into your “first aid kit": e.g. a pump for pressures up to 8 bar and a cartridge with self-sealing spray for the quick repair of a flat tyre. Sufficient lighting gear and reflectors are equally important as navigation devices to avoid getting lost. If you travel with pedestrians, you have to consider that they might be faster when the road rises. Let them go ahead - you'll catch up with them easily when it's downhill again. Travelling with the handbike The handbike is an ideal way of travelling with other people on bikes. A good planning of your route is very important to avoid ending up on gravel roads or facing obstacles. Off-road bikes however, are more for the hardboiled and you should stay on the road if bicycle paths are signposted. Roads that follow a water line are usually flat and therefore more convenient for using a handbike. If you book your trip with a specialised agency, your luggage and wheelchair will be transported to your next hotel so that you can enjoy your dinner in your wheelchair for your daily use. Handbike Travelling with the Swiss-Trac If you want to do easy hikes and enjoy nature with your family and friends, the Swiss-Trac is your best companion. This pulling device is attached to your common wheelchair so that you can master also off-road paths and longer and steeper inclines. However, the machine is not suited for alpine hiking trails. Tips and advice for trips with the Swiss-Trac can be found on www.swisstractours.ch (page is in German only). Some regulations apply if you want to bring your Swiss-Trac on a plane and you can download a factsheet here: www.swisstrac.ch/fileadmin/download/SWT_Infoblatt_Flugtransport.pdf (also in German only). Swiss-Trac Travelling by car Travelling by car is undoubtedly very comfortable. In most countries you can rent a car in which people with SCI can be transported but it is hard to find a rental service that offers adapted cars with manual controls. There are simple, foldable and universally usable adaptation kits that can be installed temporarily in a rental car so that people with SCI can drive autonomously (e.g. www.oasisllc.com/english/phc.htm). Considering all this, it is indeed possible to travel for example the US or Canada without bringing your own car. In Europe some disability associations already offer adapted rental cars. The following link leads to Swiss companies that offer such cars for people with SCI: www.spv.ch/en/what_we_do/further_services/car/car_rental. Adapted car The website www.paramap.ch/desktop and the respective App for smartphones provide information about Eurokey toilets, disabled parking (with picture) as well as accessible hotels in Switzerland. This year, information about cash machines and children's playgrounds will be added to the service. The application www.wheelmate.com offers information about disabled parking and toilets in many countries. The website and App wheelmap.org/en is an award-winning and maybe the best service with regard to worldwide accessibility for people with disabilities today. Eurokey for toilets, stair lifts, elevators and other facilities Eurokey is a locking system that is available in a few European Countries. More than 1.400 facilities exist in Switzerland by now that can be used with the special Eurokey. The advantages are cleanliness, protection against vandalism, accessibility and the 24/7 usage. With this service independence, autonomy and social participation of people with SCI can be enhanced. Pro Infirmis, a Swiss association for the disabled, offers the aforementioned service to people with disabilities. You can find more information, including facts about smartphone applications and locations (in Germany, Austria, Switzerland, and the Czech Republic) on www.proinfirmis.ch/index.php?id=3205. Many countries have their own locking systems (e.g. Great Britain) and you can ask for advice at local associations for the disabled. Travelling by tram and bus In many countries public transport in cities is well organised for wheelchair users since the second world war. Modern trams and busses are equipped with a low-floor entrance and some buses can tilt to one side (kneeling bus) to make access easier for people in a wheelchair. If needed, the conductor will assist you in getting on. If you travel by tram (or train), be careful not to fall into the gap between platform and tram with your steering wheels - tilt the wheelchair backwards if possible to enter safely. If you use coaches for longer distance when you travel abroad, it is very helpful to have your own seat cushion and toiletries nearby in your hand baggage. It is not recommended to let someone else take apart or fold the empty wheelchair because mishandling might damage it. A better option is to leave the wheelchair as it is but apply the brakes. By this, the wheelchair can't roll off uncontrolledly. If needed, it can be pushed by lifting up the big wheels and if an assisting person knows how to release the brakes, she or he will for sure also know how to apply them again. Travelling by train If you have a Swiss “Begleiterkarte” (accompanying person's card), an additional person travels free of charge in Switzerland. In Germany persons with SCI travel for free if they hold a disabled person's pass. In case the marker B is not crossed out, the accompanying person also travels for free - except for connections with the trains IC, EC and ICE. You can contact the mobility hotline in Germany under 0049-(0)1805 512 512 (toll number). One of the most important aspects to consider when travelling by train is that not all toilets on the train are accessible. You should calculate enough time if you have to change trains to avoid missing a connection. On many regional connections in Switzerland low-floor wagons are used, for example in the S-Bahn network, to ensure that wheelchair users can access the trains without major difficulties. With regard to long-distance travelling, however, in several places the help of assisting people or railway employers is needed. Low-floor entrance (Source: SBB Brochure “Passengers with a disability”) Folding ramp (Source: SBB Brochure “Passengers with a disability”) Lifting ramp (“Mobilift”) (Source: SBB Brochure “Passengers with a disability”) The SBB Call Center Handicap of the Swiss Federal Railways (SBB) will assist in organising help at specific train stations, the so called support point stations. It is worthwhile to contact the Call Center Handicap in advance to register your trip to ensure that assisting staff will be on-site. You can either call the Swiss toll-free number 0041-(0)800 007 102 (between 6-22 o'clock) or you can write an e-mail to mobil@sbb.ch. The “Advanced search" of the online schedule of the SBB also provides information on possibilities to independent access of the train network. The service shows you if you can access the trains by yourself, if you have to register first or if the transport without an assisting person is possible at all. The brochure “Passengers with a disability" (only available in German, French and Italian) offers more information and can be downloaded at the top right corner of this website: www.sbb.ch/bahnhof-services/reisende-mit-handicap/sbb-call-center-handicap.html. A map with all support point stations is also available on this site. In other countries than Switzerland usually you can find similar information on the internet sites of the respective providers of public transport. About the author: Dr. med. Hans Georg Koch was head physician for 19 years at the Swiss Paraplegic Centre in Nottwil/Switzerland. Together with Guido A. Zäch, founder of the Centre, he published a book that has become a key textbook in the field of spinal cord injury "Paraplegie. Ganzheitliche Rehabilitation". Hans Georg Koch is a member of the paraforum team. updated: June 2014
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At a spinal cord injury (SCI) level where hand and arm muscles are only partially innervated or not at all (tetraplegics), many daily activities such as pressing a common TV remote control, grasping the telephone receiver or pressing the light switch can become impossible. However, this loss of independence may be partly substituted through the use of assistive technologies. To enter information, various sensors such as sensing devices, press switches, control through levers, sucking and blowing- and inclination sensors, muscle sensors as well as joysticks and speech recognition present various ways for the user. During acute care at a centre for SCI, the patient is introduced to these technologies, if necessary, or will learn how to use them later on during the rehabilitation process. Usually, the first steps are the use of the nurse call button, or switching on and off the light, using entertainment devices and the telephone. At later stages during the rehabilitation process, the focus is also on the use of computers, mobile phones and finally also on what needs to be connected to these devices back home in the apartment or at the workplace, in order to use them. The individual control devices that are available on the market vary through different input possibilities, various interfaces, the number of devices that can be controlled, the more or less flexible programming of the display and (touch-) screen and their design. The range of use of the devices differs widely and therefore every user has to find the appropriate one for his/her needs and then adapt the settings individually. Ideally, different devices are tested to be able to choose specifically one or more systems. Environmental control devices An environmental control device could also be described as sort of a universal remote control. The difference is that with an environmental control device, one can choose from several input possibilities that can be adapted in a fast and flexible way if there is a change of body functions or the environment. A sensing device or joystick, for example, can be controlled from a sitting position by hand but from the bed it requires control via sucking or blowing. The data can be transferred from the environmental control device through every electronic interface such as infrared, wireless, Bluetooth, etc., depending on the area of use. As a result, all devices that feature these interfaces can be controlled via the environmental control device, after the respective codes have been programmed or transferred. Depending on what has been automated within the house/household, also doors, windows, blinds, light, heating, elevators/lifts, bed adjustment, etc. can be remote controlled. Even devices such as the TV, radio, DVD player, infrared telephones and many more can be used in this way. If the environmental control device is used through a sensor, an automatic scanning starts, i.e. single fields, whole rows or columns are being scanned and displayed one after each other. Therefore the user has to give further input via the sensor to trigger a command. Such devices are for example Keo, Gewa Control Prog, Gewa Control Omni or Senior Pilot. SiCare can also be used via speech control but it is dependent on the speaker, while Easy by Voice, a system that is completely integrated into the electronic system of the house, works independently of the speaker. Environmental control device “Gewa Control Omni” What about mobile phones? Some producers offer specific solutions where the environmental control device can be used through an integrated SIM card directly as mobile phone and for text messaging (for example Gewa Control Omni). However, to use the many functions of a smartphone, different systems or models, such as the HouseMate for Android smartphone or tablets or the James4 are needed. Here the smartphone itself becomes the environmental control device. Specific adaptations and respective accessories are however necessary. The speech recognition system of some smartphones enables the use of many functions; however, for the use on a daily basis, the user quickly reaches the limit of input options since these devices cannot be used without using the keys or touch screen. Environmental control system “HouseMate” (Source: Unique Perspectives Limited) Computer operation In order to be able to use a computer without mouse and keyboard, they have to be replaced with other devices or software. Options are specific or individually adapted computer mice, joysticks, touch pads, track balls or keyboards, as well as the use of external sensors for clicking functions. The movements of the cursor can also be executed completely without finger, hand or arm functions. Using the HeadMouse, the device captures and translates the cursor movement through an infrared reflecting point that is attached to the forehead or a pair of glasses. By eye control through SeeTech, Tobii PCEye or Alea, not even a head movement is necessary. Trackball mouse (Source: © by Computer für Behinderte) HeadMouse (with point attached to the glasses) In order to write texts, a screen keyboard is also necessary. By resting on one spot, the clicks are triggered through a click software, e.g. Dragger 32 or ClickMaster or through external sensors. Some of the screen keyboards that are integrated in the operating system work quite well. However, they do not include the specific settings and word auto complete options than a specialised software does, such as Onscreenkeys and WiViK. For small movements that can be executed by mouth, the wireless IntegraMouse Plus is a good option. Clicking can be executed directly via sucking or blowing. Mouth mouse “IntegraMouse” In addition to that speech recognition software has gained growing importance, especially for word processing. With Voice Pro or Dragon Naturally Speaking, orders, dictation functions and the cursor movement can be executed by speech input. Communication With the loss of voice or speech functions, caused for example through a permanent or temporary artificial ventilation, devices can be used that replace verbal communication. Text based devices such as Allora or Lightwriter have a keyboard for information entry, a display to show the written text and sometimes they use synthesized voices in order to replay composed texts. Other devices use pictures and symbols to communicate (LightTalker, SmallTalker, Eco Talker) and emphasize these with saved statements and texts which, according to the product, can be recorded by assisting persons. Furthermore, there are communication software such as The Grid, OnScreenCommunicator, Tobii, and MoMobil, that are transferred to an existing medium such as a computer, laptop or tablet or they are offered already integrated into a computer-based device. These devices offer more options, for example connecting various control and input modules as well as taking over functions of an environmental control through specific interfaces. This allows persons with heavy impairments to use this device as computer, environmental control and communication aid. An extensive list of assistive technologies can't be sufficiently discussed in this article. The mentioned examples are rather supposed to give a first overview. The market is changing rapidly and improvements and newly developed technologies are offered on a regular basis. For further information and individual consultations, please use the support of external companies or specialised centres for spinal cord injury. Supply sources: Stiftung für elektronische Hilfsmittel FST, Charmettes 10b, CH-2006 Neuenburg, www.fst.ch (only in German, French, Italian) Active Communication, Sumpfstrasse 28, CH-6300 Zug, www.activecommunication.ch (only in German) INCAP GmbH, Bauschlotter Str. 62, D-75177 Pforzheim, www.incap-at.de/index.php?article_id=1&clang=1 (in English) Computer für Behinderte, Schnorrstraße 70, D-01069 Dresden, www.computer-fuer-behinderte.de/sprachen/1english.htm (in English) Bundesfachverband Elektronische Hilfsmittel für Behinderte e.V., www.beh-verband.de (only in German) updated: March 2014
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