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Running head: TRANSVERSE MYELITIS

Transverse Myelitis Case Study Anthea Mourselas, Jessica Pierson, Chrys Quiroz, William Unger, Rebecca Walters Touro University Nevada

TRANSVERSE MYELITIS Transverse Myelitis Case Study Transverse Myelitis (TM) can be defined as, a clinical syndrome in which an immunemediated process causes neural injury to the spinal cord, resulting in varying degrees of weakness, sensory alterations and autonomic dysfunction. TM may exist as part of multi-focal CNS disease, multi-systematic disease, or as an isolated, idiopathic entity (Krishnan, Kaplin,

Deshpande, Pardo, & Kerr, 2004). Jose is an eight-year-old boy with TM. During his spare time, he enjoys playing soccer and video games. Jose first complained of a headache and then his right arm became tired after playing outside one day. The next day he woke up and couldnt move his right arm at all and was having difficulty breathing. His parents rushed him to the hospital, and after a series of diagnostic tests he was diagnosed with TM. Description of Occupational Performance Activities of Daily Living (ADLs) The onset of TM has affected Joses functional performance in all areas of occupation. He cannot participate independently in any self-care activity and requires full assistance. First, ADLs such as bathing and showering require assistance due to limited range of motion (ROM) and lack of core strength. Jose may be able to support himself in the shower because he is able to bear weight when he stands, but he would need maximum assistance due to poor postural control. Jose requires assistance to use the restroom. He is unable to transfer himself on and off of the toilet. He is able to use his left hand to lightly squeeze onto the bar for assistance when stabilizing during toileting. His mother and staff must also help him with his continence needs. Due to pain, Jose requires his shirts to be cut in half in the back to be able to passively thread his arms through his shirts during dressing. Jose requires a gastrostomy tube and tracheotomy for

TRANSVERSE MYELITIS feeding. He also requires a working ventilator for breathing purposes. He has limited participation in functional mobility. He is dependent for bed mobility and transfers. Instrumental Activities of Daily Living (IADLs) chores, church, getting around

IADLs are limited due to his condition. Since Jose is in a pediatric inpatient rehabilitation unit in a skilled nursing facility, he is unable to move around the community. He used to ride his bicycle around the community and worries about not being able to get to his friends homes and parks in the neighborhood. Jose would benefit from assistive devices that would assist him in mobility when he is ready to go back out in the community. His lack of mobility also prevents Jose from attending Catholic Church services on Sundays with his family. He misses going to Sunday school and spending the day with his friends and family. A mobile wheelchair could benefit Jose if he was to venture to the park and to get around at church service until he reaches full rehabilitation. In the skilled nursing facility, Jose does not have any chores or household activities to take care of, however he was always a good helper and worries he wont be able to help mom with the chores around the house. Rest and Sleep Jose requires a lot of rest and little movement due to the severity of his condition. He needs reduced involvement in taxing physical activities. Jose needs to be situated comfortably and safely in his bed in order to participate in functional sleep. Participating in sleep preparation is painful for Jose because it requires him to change into pajamas. He needs full assistance to prepare for bed time including activities such as getting into bed and becoming comfortable enough to fall asleep. His wake and sleep cycle are established by the rehabilitation clinic according to his needs. Jose must have his ventilator to sustain sleep without disruption.

TRANSVERSE MYELITIS Nighttime care of toileting needs or hydration must be addressed by a caregiver (mother). His comfort and safety must be monitored by others while sleeping. Education Joses current medical condition is affecting his participation in education because he is unable to attend school. He has decreased fine motor skills to participate in writing, which is limiting him in his core subject classes. It is important to keep Jose participating in educational activities while in the skilled nursing facility, so he doesnt fall too behind academically. For example, reading to his mother before bed and participating in educational iPad games, which require only limited fine motor skills, will exercise his cognitive abilities. Work Jose is unable to participate in any job interests such as volunteering because of his

current limitations. Jose is unable to perform well in his occupation of being a student. Activities including classroom duties are no longer functional. He is unable to participate in social interaction with his peers or teachers. He cannot initiate, sustain, or complete required school work. The lack of mobility in his upper extremities strongly inhibits his abilities to participate in writing or play activities. Jose will not be able to explore volunteer activities or participate in causes that benefit the community. For example, he would not be able to fundraise for his soccer team with the rest of his teammates. Play Play activities are difficult to participate in because Jose is fearful of movement. He enjoys playing video games and cannot participate in playing them currently because of his limited ROM. Until Jose improves, he will not be able to participate in spontaneous play activities. Even simple activities that have been developed such as crossing midline for play

TRANSVERSE MYELITIS activities have been affected. At Joses age he should be participating in play activities that encompass rules. He should have a hobby or enjoy collecting items of interest. Jose participates in organized sports activities such as soccer. However, currently he cannot participate in soccer because he does not have trunk or head stability and mobility. It is important to keep him involved in social play where he has consistent friends to talk and joke around with. However, his condition is inhibiting all functional areas of play. Leisure In Joses spare time, he enjoys video games and soccer. These activities can be spontaneous for him; however, they can also be leisure because he uses his discretionary time

after he finished his homework to participate in video games of his choice and practice his soccer skills. Currently, he is unable to participate in these activities because of his limited functional mobility. Social Participation Before the onset of his condition, Jose interacted with his community by participating in sports, playing at the park, and church related activities. Jose has a good relationship with his parents. They often encouraged him to invite friends over to play. Now, being limited to the skilled nursing facility, he interacts mostly with his mother because she stays at the facility with him, acting as his primary caregiver. However, because of his condition and living situation, Jose has been unable to participate in social interactions with his peers which foster development of friendships. Description of Movements, Postural Reactions, and/or Reflexes Jose has difficulty with movements because they are painful for him. Passive range of motion (PROM) is also very painful. He is able to move both of his legs and bear weight to

TRANSVERSE MYELITIS stand, but lacks head control and trunk strength. He is able to squeeze lightly with his left hand but can only wiggle his right middle finger. He requires maximum assistance with head and trunk stability during mobility. Jose has lost the ability to regulate the mechanisms essential to movement after his diagnosis. All postural reactions were affected. Jose is limited in his ability to anticipate his movements and preset because it is difficult for him to co-activate his trunk muscles. Righting reactions are affected because Jose has difficulty aligning his body and

keeping his head upright. His equilibrium reactions are affected because he is unable to return his body to a vertical position after movement. Postural sway is more prevalent than before the onset of TM because poor stability and lack of motor control increases involuntary oscillatory movement. Motor control and stability were mainly affected because Joses main difficulty is facilitating movement experiences. He lost fine motor control of dexterity for manipulating objects and bilateral coordination required for performing everyday tasks. His motor development has been affected as well in areas such as running, jumping, throwing, catching, and kicking a ball. These functional movements are important to Jose, specifically with soccer video games, and education, since they are meaningful activities for him. Self-Regulation Jose is experiencing a substantial amount of pain which is impacting his functional performance in all occupational areas. Extreme pain is often a symptom associated with TM. According to Wolf, Lupo, and Lotze, One of the most common initial symptoms in children is pain (60%) (2012, p. 1428). Secondary complications associated with lack of movement and decreased strength, such as decubitus ulcers and contractures, can also cause pain and decrease functional levels. It is imperative that the occupational therapist work on proper positioning and PROM to prevent these secondary medical problems from occurring (Krishnan et.al, 2004).

TRANSVERSE MYELITIS However, Joses high pain levels and anxiety about movement are making him fearful during therapy sessions, especially during PROM exercises. To address this complication, the use of relaxation techniques to decrease his pain and anxiety will be a major aspect of his treatment plan. Appropriate Assessments The WeeFIM II (Functional Independence Measure for Children) would be an

appropriate assessment tool to use with Jose upon initial evaluation in the skilled nursing facility. By using structured observation and the WeeFIM II, the therapist could assess his functioning in 18 specific ADL tasks, as well as the level of assistance needed to complete those tasks. To gain more insight into Joses functional level in the domains of self-care, mobility, and social participation, the Pediatric Evaluation of Disability Inventory (PEDI) could also be used. The PEDI could also helpful in assessing the level of caregiver assistance being provided to the child. This aspect of the PEDI would give the therapist an insight into family dynamics that may be helping or hindering the childs functional level. Both of these assessment tools are meant to be used with children six months to seven years of age. However, there are stipulations that can be used with an older child that is functioning at a lower level due to physical impairments. Therefore, both tools could still be used with Jose because he is performing at a much lower functional level than his typical eight year old peers. (Case-Smith & OBrien, 2010). 5 Functional Problem Statements 1. Jose is unable to independently complete bed transfers due to severely impaired head and trunk stability. 2. Jose is unable to thread his arms overhead through a shirt due to pain experienced during PROM.

TRANSVERSE MYELITIS 3. Jose is unable to control his arms and head due to fear of movement during PROM exercises in treatment sessions. 4. Jose is unable to operate a traditional video game controller due to significant loss of motor control in his upper extremities. 5. Jose is unable to independently engage in ADLs due to loss of motor control and intolerable pain in his upper extremities. 5 Family/Caregiver/Child Goals Joses caregiver (mother) will facilitate a home treatment regimen in order for him to gain maximum functionality and to prevent secondary complications from occurring. It is essential for Jose to continue strengthening his muscles (trunk, lower limbs, etc.) so that he does not experience muscle atrophy. Improving his joint ROM can be achieved with an active stretching routine. A bracing program can be implemented for prolonged stretch or to be held in a functional position. Joses mother has vocalized goals that she would like to have accomplished throughout Joses occupational therapy sessions. She wishes to be heavily involved in Joses recovery process. The first goal that she stated was dealing with pain management. She would like to be educated on strategies that she can implement when Jose is experiencing pain. Due to Joses cultural background, the mother does not intend to rely solely on medication to mitigate Joses pain. However, she really wants Jose to be as comfortable as possible and would like to learn nonpharmacological methods to alleviate pain and secondary complications. Secondly, the mother would like for Jose to be able to regain some functionality within his upper limb ROM so that she no longer has to cut the back of his shirts for him to don a tshirt. She stated that it is extremely inconvenient and impractical for her to continue this

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adaptation at home. Active ROM (AROM) will be addressed once postural control is established. The mother was informed that the sequencing of Joses therapy program will require progress in certain areas in order to promote improvement overall. It is desired that Joses therapy initially address pain management and proper positioning. Once that has been achieved, postural control/strength and weight bearing will be addressed. Finally, activities involving AROM will be implemented. Once Jose has improved with his ROM, the mother stated that she wants her son to be able to regain independence with his ADLs. This includes brushing his teeth and washing his face. Since he is eight-years-old, she wants him to be independent with basic everyday functions, though she is willing to provide support when necessary. She would like a home care routine to be recommended for Jose that is easy for her to follow through with and does not interfere with family obligations. Prior to Joses diagnosis, Joses mother was not familiar with TM. Therefore, informative websites in Spanish will be provided to her for additional support and to understand what to be cautious and hyper vigilant about when healthcare professionals are not present to guide her. The fourth goal that the mother stated was dealing with her sons education. She does not want Jose to fall too far behind in school and wants fine motor components to be addressed at some point during therapy. She understands that this may not be achieved or addressed until later but has stated her concerns regarding his education. Lastly, Jose stated that one of his goals for therapy is to be able to play games just like a regular eight-year-old. He really enjoys playing video games and is passionate about soccer and wants to still participate in these activities, despite his condition. With the continued participation in play activities, secondary complications such as depression can be avoided.

TRANSVERSE MYELITIS Coast Goals, Objectives, and Activities COAST Goal 1. Joses pain level will decrease 2 points on the FACES Pain Rating Scale during relaxation techniques with minimum assistance within 4 weeks. Objectives 1. Jose will participate in a relaxation script with verbal cuing to help minimize pain during therapy sessions within 2 weeks.

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2. Jose will participate in a guided imagery exercise with verbal cuing from caregiver to reduce Joses pain levels within 2 weeks. Activities Relaxation script: 1. The occupational therapist (OT) teaches Jose how to use FACES Pain Rating Scale by discussing pain levels and identifying activities where pain levels are highest and lowest throughout his day. 2. OT will use the relaxation script with Jose during his participation in PROM, and identify his pain level on the FACES Pain Rating Scale before and after treatment session. Guided Imagery with caregiver: 1. OT will demonstrate a guided imagery exercise while caregiver observes using the FACES Pain Rating Scale before and after guided imagery. 2. Caregiver will demonstrate the same guided imagery exercise and FACES Pain Rating Scale while OT observes and provides feedback. COAST Goal 2. To prevent secondary complications of immobility, Jose will change position in bed to a

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functional supported seated position, dependent on caregiver, in order to participate in play and educational activities at least three times a day, for at least 30 minutes at a time, beginning within 4 weeks. Objectives 1. Jose will participate in position changes with maximum caregiver assistance within 2 weeks. 2. Jose and caregiver will collaborate, establish, and implement a set routine involving 3 play and educational activities to engage in throughout the day, within 1 week after proper positioning has been implemented. Activities Proper Positioning: 1. OT will demonstrate caregiver education on repositioning Jose to a functional supported seated position using the adjustable hospital bed, and pillows for arm support in order to participate in play and educational activities. 2. OT will observe caregiver and assist her with prompting if necessary while repositioning Jose properly for his play and educational activities. It is important to remind Jose, to use relaxation techniques for managing his pain during repositioning. Activity Collaboration: 1. In one treatment session, OT, caregiver, and Jose will collaborate and establish a schedule of 3 play and educational activities Jose will participate in at least 3 times-a-day, once in the morning after breakfast, once in the afternoon before dinner, and once before bedtime. 2. OT will oversee implementation by providing feedback of activities and schedule in order to assist caregiver and Jose in maintaining a routine including but not limited to: an educational

TRANSVERSE MYELITIS iPad game in the morning, board games in the afternoon, and reading at night. COAST Goal (Jose is no longer using a ventilator and tracheotomy and is at a maximum assistance level with postural stability by this phase in his treatment.) 3. Jose will weight bear while engaged in supported seating and standing to increase postural

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strength and control for at least 60 minutes a day while participating in exercises and ADLs with moderate assistance within 8 weeks. Objectives 1. Jose will display increased postural strength by participating in strength exercises and activities while seated on a therapy ball with maximum assistance within 4 weeks. 2. Jose will be engaged in supported standing with maximum assistance while participating in ADLs at the sink twice a day within 4 weeks. Activities Supported Sitting: 1. Jose will practice sitting on the therapy ball while OT is providing maximum assistance in trunk support working on slight movements to increase postural adjustments. 2. Jose will be seated on therapy ball with maximum trunk support from OT while caregiver is sitting on another therapy ball. Jose and mom will play soccer by kicking soccer ball back and forth, having Jose alternate between legs while kicking to enhance weight bearing and postural strength. Supported standing: 1. Jose will work on brushing his teeth, at the sink, in the bathroom, while OT is providing maximum trunk support, and mom is assisting him with brushing teeth using hand over hand.

TRANSVERSE MYELITIS 2. Jose will work on washing his face at the sink in the bathroom while OT is providing maximum trunk support, and mom is assisting him with washing face using hand over hand. Treatment Session

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Environmental setting. Most of Joses treatment sessions will take place in his room at the skilled nursing facility. Due to his high pain levels and overall weakness, most of his goals will focus on decreasing his pain and making him as comfortable as possible with proper positioning in his bed. Once he regains more strength and shows a decrease in pain then the treatment goals will focus on performing basic ADLs in the bathroom of his room. The therapy gym at the facility will also be used. It will be important to move treatment sessions out of his room and into different parts of the skilled nursing facility whenever possible. This will increase social participation opportunities with and allow him to work on a variety of skills in different settings. This will hopefully help him generalize skills and also improve Joses sense of normalcy. SOAP Note. Name: Jose; Age: 8 years; Date: December 6, 2012; Time: 1:00 PM S: subjective. Jose was eager and participated well by displaying motivation, reciprocating smiles, and conversing throughout the treatment session. O: objective. Jose participated in a 60-minute OT tx. session at an inpatient pediatric unit of a skilled nursing facility to address upper extremity ROM, postural strength, and functional mobility. Jose followed verbal instructions throughout the activities and responded with full sentences indicating when he felt pain. Jose starts out tx. with a pain level of 1. Relaxation script is used whenever pain is felt. Jose demonstrates difficulty during PROM of upper extremities. Jose completes a round of an educational game on the iPad after moving to a seated position in bed. Max. assist. is provided to transfer Jose to a wheelchair for transportation to the therapy

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gym. Jose required max. assist. and verbal cuing for transfer onto exercise ball. Jose is unable to consistently right his trunk whenever he is moved. Jose is able to use both lower extremities to kick the soccer ball 80% of the time. Jose is inconsistent with transfer after soccer activity and requires max. assist. for transfer. Jose ends tx. session with a pain level of 2. A: assessment. Joses lack of postural strength during tx. session limits his ability to participate in functional mobility and age-appropriate play. Poor upper extremity ROM limits his ability to engage in functional ADLs. Ability to decrease subjective pain sensation during PROM of UE and assist in positioning and transfers demonstrates Joses progress in ROM and strength. Jose shows potential to improve areas of concern by demonstrating continued participation and less fatigue throughout tx. session. Jose will benefit from continued skilled OT intervention with focus on improving UE ROM, weight bearing and increasing postural strength which are essential for participation and engagement in functional ADLs. P: plan. Jose will continue to be seen for 60-minutes, 5x/wk, for 4 months to address areas of difficulty with UE ROM, postural strength, and weight bearing. Plan to address poor UE ROM with continued PROM exercises. Plan to address postural strength through righting exercises on exercise ball and soccer activity. Plan to address weight bearing through participating in supported standing exercises involving ADLs at the sink. Post-discharge environment. Once Jose completes his stay at the pediatric unit of the skilled nursing facility, he will be discharged home where he lives with his mother and father. The father is the main financial source of the family and they live in a 2 bedroom, 1 level house. It has been recommended that they have a home assessment to evaluate whether the environment is beneficial for Jose. Since their house is one level, the structure of the house is favorable for Joses condition. Major changes will mainly occur within the bathroom and bedroom. Within the

TRANSVERSE MYELITIS bedroom, Jose will have added padding and cushioning for his bed to decrease pressure points

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while engaging in activities. Adaptive equipment such as long-handled sponges and grab bars for toileting and the shower will be considered. Also, a portable bath seat and hand-held shower heads can be helpful during showers. Jose is ambulatory and will be using a walker for mobility around the house. A wheelchair will also be used in cases and activities where fatigue may occur. Justifications for treatment goals. In order to work on our long term goal of increasing Joses independence, especially when performing ADLs, other pertinent goals need to be accomplished first. According to the authors of Transverse Myelitis: Pathogenesis, Diagnosis and Treatment, The therapeutic goal is to improve function of the patient in performing specific activities of daily living through improving the available joint ROM, teaching effective compensatory strategies, and relieving pain (Krishnan et. al, 2004, p. 1494). Pain management and prevention of secondary physical complications, such as contractures and bed sores, are the top priorities during the early stages of his recovery. After Joses function begins to improve, he will no longer need a ventilator and tracheotomy. It will then be appropriate to work on postural strengthening and control which will assist him in participating with his ADLs. Goal 1. Pain management is the first goal that we felt needed to be addressed when working with Jose. Joses occupational participation will be limited and greatly compromised if his pain symptoms are not treated. As occupational therapists, we cannot use pharmacological interventions to treat his pain. However, we can teach Jose and his mother psychosocial interventions, such as guided imagery and relaxation techniques, that will help mitigate the pain. In an article addressing pain management techniques used by occupational therapist, McCormack stressed the healing power of guided imagery and visualization exercises. He stated that, Through the use of visualization and metaphors, the therapist can empower the patient by

TRANSVERSE MYELITIS harnessing his or her natural ability to relieve pain (McCormack, 1988, p. 588). McCormack

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also advocated using the FACES Pain Rating Scale to help form a uniform pain vocabulary with the client. He felt this was important to help the therapist understand the clients subjective pain experience (McCormack, 1988). As Jose is experiencing a great deal of pain throughout the day and night, it is necessary that Joses mother be involved in his pain management plan. By teaching her techniques to use with Jose, she can help him manage his high pain levels outside therapy sessions. As stated previously, it is also important that PROM exercises be performed to prevent the secondary complication of contractures. Jose is experiencing a great deal of fear and anxiety about being moved during these exercises. The relaxation script will be used to help reduce his fear and anxiety level while these necessary movements are being performed.

McCormack, G.L. (1988). Pain management by occupational therapist. American Journal of Occupational Therapy, 42 (9), 582-590. doi: 10.5014/ajot.42.9.582

Goal 2. Prevention of secondary complications associated with TM is the next area that needs to be considered when working with Jose. Immobility and loss of functional skills is a major concern during the early stages of therapy. According to Krishnan et al., It is important to begin occupational and physical therapy early to prevent the inactivity related problems of skin breakdown and soft tissue contractures that lead to loss of range of motion (2004, p. 1492). To prevent these problems we will create a play schedule to provide opportunities to position him in an upright rather than supine position throughout the day. Play and leisure activities will be the focus of our activities since play is major occupation for children his age. As Jose has difficulty

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moving actively, he will need maximum assistance to sit in an upright positioning with the aid of the hospital bed and pillows for support. Placing pillows under his arms during the play activities with provide comfort, as well as support that will prevent musculoskeletal changes from occurring. The pillows will also help increase his postural stability, which will ultimately increase his functional performance in play and leisure activities. According to Case-Smith and Obrien, Children who have problems with posture or movement often lack sufficient control to assume or maintain stable postures during activity performance and thus benefit from adaptive positioning. Adaptive positioning may include...low-technology devices (e.g., lapboards, pillows, towel rolls) (2010, p.491). Another important consideration is that depression is often associated with TM. Krishna et al. stated that In addition to signs and symptoms of direct spinal cord involvement by the immune system in transverse myelitis, there also appears to be indirect effects manifested as depression....This depression does not correlate significantly with the degree of physical disability, and can have lethal consequences if left untreated (2004, p. 1489). This is why we felt that creating a schedule and having him re-engage in play activities will increase his sense normalcy and combat feeling of helplessness and depression. Having him participate in play activities that are meaningful can provide a distraction from pain.

Krishnan, C., Kaplin, A.I., Deshpande, D.M., Pardo, C.A. , & Kerr, D.A., (2004). Transverse myelitis: Pathogenesis, diagnosis, treatment. Frontiers in Bioscience, 9, 1483-1499

Goal 3. For goal three, we decided to work on strengthening his postural muscles because

TRANSVERSE MYELITIS postural stability is a concern. Weakness of the lower limbs is most commonly associated with

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TM. However, weakness of the torso and upper extremities can also be present (Wolf, Lupo, & Lotze, 2012). Jose presents with the former symptoms and can actually stand and bear weight on his legs for a limited amount of time. In order to increase his functional performance during ADLs and eventually IADLs postural strengthening must be addressed. The rehabilitation strategies for patients with TM outlined by Wolf, Lupo, and Lutze include working on strengthening, weight bearing and maintaining range of motion (2012). Daily weight bearing activities are suggested for 45-90 minutes per day (Wolf, Lupo, Lutze, 2012). It is important to start by strengthening his proximal trunk muscles before addressing the more distal muscles in his upper extremities and hands. His fine motor skills can be worked on once he gains enough strength to support himself in standing and sitting. As soccer is a significant activity for Jose the soccer ball activity will be used to make the activity more meaningful to him.

Wolf, V.L., Lupo, P.L., & Lotze, T.E. (2012). Pediatric acute transverse myelitis overview and differential diagnosis. Journal of Child Neurology, 2012 (27), 1426-1436

TRANSVERSE MYELITIS References Case-Smith, J., & OBrien, J.C. (2010). Occupational therapy for children. (6th ed.). St. Louis, MO: Mosby Elsevier Hockenberry-Eaton, M., Barrera, P., Brown, M., Bottomley, S., & ONeill, J. (1999). Pain management in children with cancer. Houston: Texas Cancer Council. Krishnan, C., Kaplin, A.I., Deshpande, D.M., Pardo, C.A. , & Kerr, D.A., (2004). Transverse myelitis: Pathogenesis, diagnosis, treatment. Frontiers in Bioscience, 9, 1483-1499

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Martin, A. (2006, August 6). Pain management/PROM/relaxation techniques co-treatment with physical and occupational therapy. Retrieved from http://http://recreationtherapy.com/tx/painmanagement.htm McCormack, G.L. (1988). Pain management by occupational therapist. American Journal of Occupational Therapy, 42 (9), 582-590. doi: 10.5014/ajot.42.9.582 Wolf, V.L., Lupo, P.L., & Lotze, T.E. (2012). Pediatric acute transverse myelitis overview and differential diagnosis. Journal of Child Neurology, 2012 (27), 1426-1436

TRANSVERSE MYELITIS Appendix A FACES Pain Rating Scale with Instructions in Spanish and English

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Expliquele a la persona que cada cara representa una persona que se siente feliz perque no tiene dolor o triste perque siente un poco o mucho dolo. Cara 0 se siente muy feliz perque notiene dolor. Cara 1 tiene un poco de dolor. Cara 2 tiene un poquito ms de dolor. Cara 3 tiene ms dolor.Cara 4 tiene mucho dolor. Cara 5 tiene el dolor ms fuerte que usted pueda imaginar, aunque usted no tiene que estar llorando para sentirse asi de mal. Pidale a la persona que escoja la cara major descibe su proprio dolor. Esta escala se puede usar con personas de tres aos de edad ms. Tell the person that each face represents a person who is happy because they have no pain or feel sad because they have a little sad or much pain. Face 0 is very happy because you are not experiencing any pain. Face 1 has some pain. Face 2 has a little bit of pain. Face 3 has more pain. Face 4 has a lot of pain. Face 5 is the worst pain you can imagine, although you do not have to be crying to feel this bad. Ask the person to choose the best face that describes his/her own pain. This scale can be used with people from three years of age and up. (Hockenberry-Eaton, Barrera, Brown, Bottomley, & ONeill,1999).

TRANSVERSE MYELITIS Appendix B Guided Imagery Exercise in English

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Make yourself as comfortable as possible. Move around in your chair or bed. Take a deep breath through your nose and breathe it out slowly. I am going to count and with each number you will notice yourself becoming more comfortable. 12, breathing softly, 11-10-9-8, you can close your eyes if you wish. You may want to imagine in your mind a place that is special to you. It may be at the seashore, by a river, in the mountains. There may be other people there with you, or you might want to be by yourself. 7-6-5-4, you can enjoy this special place and know that your mind will remember it when you need to return. Imagine your special place and visualize all the things that are happening around you? What is temperature like in your special place? Is cool with a breeze or sunny and warm? What colors do you see around you? Are they dark and calm or colorful and energetic? What do you smell around you as you walk through your special place? What sounds do you hear happening around you while you explore your special place? 3-2-1, your breathing is now slow and easy. The muscles of your face are relaxed. Let yourself see, feel, and hear the surroundings of that special place. It is yours. (Pause a few minutes and let them enjoy that special place). When you are ready to return from that special place all your own, you will become more aware of my voice, aware of the light in the room. You may want to stretch your muscles, take a deep breath. You can open your eyes when you are ready. Guided Imagery Exercise in Spanish Hgase lo ms cmoda posible. Moverse en la silla o en la cama. Tome una respiracin profunda por la nariz y respirar el aire lentamente. Voy a contar y con cada nmero que se dar cuenta de s mismo cada vez ms cmodo. 12, respirando suavemente, 11-10-9-8, puede cerrar los ojos si lo desea. Usted puede imaginar en su mente un lugar que es especial para usted. Puede ser en la orilla del mar, de un ro, en las montaas. Es posible que haya otras personas all con usted, o usted puede ser que desee estar solo. 7-6-5-4, podr disfrutar de este lugar tan especial y saber que su mente lo recordar cuando necesite volver. Piense en su lugar especial y visualizar todas las cosas que estn sucediendo a tu alrededor? Cul es la temperatura como en tu lugar especial? Es fresca, con una brisa o soleado y clido? Qu colores ves a tu alrededor? Son oscuro y tranquilo o colorido y lleno de energa? Qu huele a tu alrededor mientras camina por el lugar especial? Qu sonidos oyes sucediendo a su alrededor mientras explora su lugar especial? 3-2-1, su respiracin es ahora lento y fcil. Los msculos de su cara se relaj. Djate ver, sentir y escuchar los alrededores de ese lugar tan especial. Es tuyo. (Haga una pausa de unos minutos y hacerles disfrutar de ese lugar especial). Cuando est listo para volver de ese lugar especial todos los tuyos, te volvers ms consciente de mi voz, consciente de la luz en la habitacin. Si lo desea, para estirar los msculos, tomar una respiracin profunda. Ya puedes abrir los ojos cuando est listo. (Hockenberry-Eaton, Barrera, Brown, Bottomley, & ONeill,1999).

TRANSVERSE MYELITIS Appendix C Relaxation Script

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(To be spoken calmly, softly, and slowly) Now close your eyes. Im going to count to 10 and as I count, you are going to become more and more relaxed. 1...2..your mind is clear of all thought and stress. 3..4. Get comfortable in your seat (or bed) sinking deeper, relaxing your shoulders, becoming more and more relaxed. 5..6..imagine that you body is hollow and weightless, relaxing your arms. 7..8.. You feel as though you are floating freely in midair. 9...10..you are now completely relaxed. Pause. checking to assure patients eyes are closed. Get comfortable in your chair (or bed). Keeping your eyes closed. Pay attention to your breathing. Pay attention to the rise and fall of your chest as you breathe in and out. Pay attention to the rhythm. If you are breathing rapidly, focus on decreasing the pace of your breathing to a slow deep, rhythm, feeling your chest rise and fall slowly. As you inhale, image you are breathing in clean, relaxing air, replacing stress and tension. As you exhale, imagine you are blowing out your stress and tension-erase all distraction from your mind. Pause. Keeping your eyes closed, pay attention to the colors and shapes you see on the back of your eyelids. Imagine that all the colors and shapes have disappeared and now you see nothing. Now, start to imagine your favorite place to go when you want to relax. It may be a place outdoors like the beach or the mountains. It may be a special room, or a place you used to visit. Allow you minds eye to take you to that place. Imagine that colors of your surroundings. It may be an assortment of colors from a sunset or sunrise green landscapes of a forest or the colors of the walls and furniture of what special room you like to go to. You see the colors of your surrounding. Imagine the textures of your surrounding. It may be a soft cotton cushion or blanket in your favorite room; wind blowing through your hair from an ocean breeze, the warmth of the sand on your feet from a walk on the beach or the warmth from a camp fire burning in the night. You feel the textures of your surrounding. Now, imagine the scents of your surroundings. It may be the familiar scent of that room, the smell of the morning dew on the trees and grass of a forest, the smell of ocean water by the shore. You smell the scents of your surrounds. Now, try to exclude the noises you hear in this room and listen to the noises of your surroundings. Hear the leaves blowing in the wind, ocean water breaking on the shore, maybe relaxing music you enjoy playing, or you may prefer complete silence. You hear the noises of your surroundings. Take a few moments feeling completely relaxed, hearing, seeing, feeling, smelling your place of relaxation PauseMotion of PT/OT to begin PROM Pay attention to you breathing. Pay attention to the rise and fall of your chest as you breathe in and out. Pay attention to the rhythm. If you are breathing rapidly, focus on decreasing the pace of your breathing to a slow deep, rhythm, feeling your chest rise and fall slowly. As you inhale, image you are breathing in clean, relaxing air, replacing stress and tension. Pause Remain relaxed and still. Keeping your eyes closed, you are going to slowly return to this room. In a few moments Ill count to 10, slowly. 1...2..you start to feel the temperature of the room. 3...4..youre beginning to hear the noises in the room. 5...6.. Feel the texture of your chair, (or bed). 7...8..youre becoming more aware of your surroundings. 9...youre relaxed. 10...open your

TRANSVERSE MYELITIS eyes and return to the room. Give client a minute to become more alert. Measure Pain levels. PT/OT continue PROM as needed. (Martin, 2006)

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TRANSVERSE MYELITIS Appendix D Treatment Session Notes

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The first 5 minutes: Assessing Joses pain on the faces scale. The session begins with the occupational therapist greeting Jose, and inquiring as to his current level of pain on the faces pain scale. Jose states that his pain is currently at a 1 on the faces scale, and his positive and enthusiastic outward disposition suggest to the therapist that he should be able to tolerate the full spectrum activities outlined for his treatment session. The next 10 minutes: Engaging in the relaxation script during PROM exercises. The therapist has Jose move to a stabilized seated position in his adjustable hospital bed. The relaxation script exercise begins by inciting a sense of calm and awareness in Jose, facilitating the relaxation of muscles in his trunk and upper extremity. Throughout the 10 minute exercise, the therapist cycles between phases of relaxation and passive muscle movement one muscle group at a time. Jose tolerates this exercise with little to no sign of distress, but does exhibit some physical guarding and resistance when the therapist abducts his arm over 90 degrees. Following the cessation of the relaxation script, the therapist asks Jose to again rate his current level of pain on the faces pain scale. He indicates he has moved from a 1 to a 2, but still maintains a positive and cooperative outward disposition. The next 5 minutes: Free time on the iPad. After completing the relaxation script and PROM exercise, the therapist allows Jose to have approximately 5 minutes of leisure time playing a preferred game on an iPad. To facilitate proper positioning, Joses arms are propped up on stacked pillows on his lap, flexing his shoulders to approximately 40 degrees and his forearms to approximately 30 degrees. His arm is also in slight internal rotation. Jose plays the game without complaint, smiling and laughing after completing a level. He talks to his mother in Spanish about the game, narrating actions as he performs them. The therapist does not inquire as to Joses pain level during this activity, but whatever it may be, J ose seems to tolerate it completely. The next 10 minutes: Transferring from bed to a wheelchair, traveling to the gym, transferring to an exercise ball. After 5 minutes of downtime have passed, the therapist informs Jose and his mother that they will be traveling to the therapy gym to play the soccer game. Jose shows some outward signs of anxiety, and asks the therapist if it means he has to move to the wheelchair. The therapist acknowledges that he will in fact have to move from the bed to the wheel chair, but reassures him that she and his mother will support him at every step, and that they will make absolutely sure he doesnt fall. Jose nods, but still appears troubled at the prospect of transferring into the wheelchair. This anxious behavior has been observed before, but has significantly decreased in intensity throughout the course of Joses treatment. His pain levels typically increase slightly once he moves from the supported seated position in the bed, to the less supported position taken during the transfer. Furthermore, the soccer game requires Jose to activate his trunk stabilizers as he sits on a large therapy ball in the gym, which can cause Jose some discomfort. While the level of discomfort has decreased significantly over the past few weeks, Jose still exhibits some fearfulness and trepidation about beginning the activity. These behaviors, however, have become short lasting (typically less than 5 minutes), and Jose typically begins to both tolerate any discomfort as well as display outward signs of enjoyment during the activity (such as laughing or giggling with excitement).

TRANSVERSE MYELITIS

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Joses mother helps Jose move from the bed into the wheelchair, during which he vocalizes a quiet moan. After being fully seated and supported in the wheelchair, the therapist enquires how Jose is feeling, to which he replies, Im fine, that was just kind of scary. I dont like getting out of bed too fast. The therapist reminds J ose that they are now going to travel to the therapy gym to play the soccer game, and a smile spreads across his face. During the short transit in the wheelchair to the therapy room, Jose displays no outward signs of distress, and engages the therapist in casual small talk about a television show he had watched earlier in the day. After reaching the therapy room, Jose transfers form the wheelchair to the therapy ball. He moans quietly again, but even less loudly than before, and smiles when he feels the therapist secure him on top of the ball. The therapist tells Jose that they are going to start with some wiggle exercises to get warmed up for the game, and Jose nods in acknowledgement. The next 20 minutes: Postural control exercises and soccer game on therapy ball . The wiggle exercises are small movements of Joses upper trunk performed by the therapist while maximally supporting Joses supported sitting. Jose remains quiet during the wiggle exercises, but does not vocalize or outwardly display any signs of distress. The therapist provides vocal encouragement and reinforcement for Joses tolerance to trunk movements. Jose successfully moves approximately 10 degrees in each direction, as well as a full circle of slight circumduction while seated on the ball. After 5 minutes of postural control exercise, the therapist informs Jose that its time to play the soccer game. Jose smiles and says Time to play soccer! to his mother in Spanish. Joses mother moves a few feet in front of Jose and takes a seat on a therapy ball about the same size. She then grabs a nearby soccer ball and places it on the ground in front of Jose. The therapist secures Joses trunk with maximal support, and helps him lean a bit forward to provide leverage for his leg to kick the ball. Jose gives a small kick to the soccer ball, sending it rolling a few feet in his mothers direction. Joses mother then carefully kicks the ball back to softly roll in front of Joses foot, allowing him to repeat the cycle. During each kick, the therapist can feel Jose pushing his back ever so slightly into extension, activating many of his trunk stabilizing muscles. He does this without complaint, and cheers his mother on. Jose successfully kicks and receives the soccer ball 3 times a minute for 15 minutes. The next 10 minutes: Transferring from therapy ball to wheelchair, travelling to Joses room, transferring from wheelchair to bed. After 20 minutes had passed in the gym, the therapist lets Jose and his mother know they were going to return to Joses room. Jose emitted another quiet moan as the therapist transferred him from the therapy ball to the wheelchair, and flexed his arms in towards his torso. The trip back to his room was uneventful, and Jose showed some outward signs of fatigue. When they reached Joses room, he transferred without protest back to the bed, saying to his mother that he wanted to go to sleep.