OT 537 Neuro Note #4: Ray's Little Ride

  I read the blog of a man named Ray who was diagnosed in December 2014 with ALS. Ray's first blog post begins with him preparing for a bike ride across the country, which is a dream he had always had. Before the doctor had diagnosed him with ALS, Ray said that he and his wife (also named Rae) had a feeling it was ALS; this is because all other diseases had been ruled out. Ray first noticed subtle changes in his voice the summer before his diagnosis, but he just ignored it. When he began having difficulty playing the guitar, he decided it was time to find out what was going on. Ray was a big family man; his wife, 3 children, grandson Jack, and friends were the most important part of his life. Ray was also a midwife and loved his work. By September 2015, Ray could barely raise his left arm high enough to reach his guitar's neck. There was only one finger on his left hand he had control over. Ray was extremely active; he wrote that he had done 100 push-ups every morning since his early 20's. Ray also loved to cycle; he estimated that he put between 5,000 and 8,000 miles on his bike every year. Riding a bike was like meditation to him.
  In order to prepare him for his bike ride across the country, Ray has some modifications done to help him on his ride. All of his muscles are fasciculation, so he found it harder to ride his bike. Students created wrist and thumb braces to give his left hand stability and keep it from falling off the bike handle. Ray's neck muscles are also weakening, so he used an adjustable head and neck support that clipped on and off as needed to his riding shorts. Ray wanted to use his ride across the U.S. to raise awareness for ALS. Ten months after his diagnosis, Ray got to do the ride of his dreams. While riding through Arizona, Ray hit a curb while riding at a high speed. He fractured 3 vertebrae, 3 ribs, and his humerus; he also had a concussion and a pneumothorax. Unfortunately, Ray did not get to finish his ride, so he asked people to ride and donate the miles he wasn't able to ride and called it "Ride for Ray."
  By December 2015, Ray's wife was noticing significant changes in his voice. He had more trouble eating, and it bothered him that he was always the last person to finish his meal. Ray also had trouble dressing himself and was getting used to letting other people help him get dressed. Ray thinks that being physically active does not dictate the speed of progression of ALS. Ray rode his bike in hopes that it would help his lungs because his respiratory capacity was significantly diminished. Ray is reluctant to use a voice machine because he feels that if he lets go of his voice, it would be gone forever. Ray received a trike to ride around in, which still gave him freedom but more safety.
  In March 2016, the only thing ALS had not affected was Ray's ability to sleep. When he eats he uses chopsticks to get the food to the right side of his mouth where he can chew it. His main form of communication during this time was texting until he got his "eye-gaze" tracking computer set up. By April, Ray's weight was down to 127 lbs. because of his difficulty with swallowing. In May 2016, Ray had a lot of difficulties breathing at night, his gait was becoming more uneven, and he started using a BiPAP machine to help him breathe. Ray wrote that each day was getting harder, and he entered hospice care at the end of May. Ray's last post was one he wrote to be published upon his death. He died in August 2016 from respiratory failure.
  I enjoyed reading Ray's blog. He never lost his sense of humor and bravely faced ALS. Ray shared so many stories of his life, and I really enjoyed reading those. Ray said that getting the diagnosis of ALS was a really lonely moment for him; he felt separated from everything and everyone. I can not imagine getting news like that, and being able to read about the emotions he felt is something I will carry with me. From pictures Ray posted on his blog, you could see how fast the disease was progressing and how much weight loss he had. Ray's main priorities were growing old with his wife, being there for his kids, and having his grandson have memories of him. Ray wanted to live whatever time he had left to the fullest. As OT's,  it is important that we realize what is important to the client and help them achieve their goals and dreams. Ray said that we can't change our problems, but we can change how we face our problems. Ray faced ALS so bravely, and his story is one I won't forget. I would highly recommend reading his blog to see what it is like for someone living with ALS.

Link to his blog: https://rayslittleride.com/category/my-blog/

OT 537 Case Study: Dementia

Pat Summitt was the head coach of the UT Lady Vols basketball team for 38 seasons. She was diagnosed with early onset dementia at the age of 59 and passed away 5 years after her diagnosis. Pat was a coach, mother, author, and spokesperson. She started the Pat Summitt Foundation to fund research for early onset dementia.  Pat had 6 miscarriages and rheumatoid arthritis before her diagnosis; doctors believe that the rheumatoid arthritis may have had a connection to the early onset dementia, but they believed it was mainly related to genetics. Prior to her diagnosis, Pat was completely independent and was coaching full-time. Pat's priorities are her son, Tyler, the Pat Summitt Foundation, basketball, and her dogs. Pat had many first symptoms before her diagnosis. She showed up to one basketball game and left her car running outside. She started calling out the wrong terms during basketball games. Pat said that she felt disoriented when she woke up, and sometime she would start driving and forget where she was going. Pat went to the Mayo Clinic and was diagnosed with early onset dementia. She was in denial at first and continued to coach the Lady Vols for 1-2 more seasons before she was forced to retire. Katherine did her OT intervention in the middle stages of the disease. In the middle stages of the disease, Pat would forget how to do ADLs, sequencing, motor skills, and would need apartment modifications such as locks on the doors. During the middle stages of dementia, there is a lot of confusion, moodiness, and personality changes. Pat lived at the Sherrill Hill Senior Living Facility during the later stages of the disease. An OT would provide resources to help Pat remember appointments and meetings. In the late stages of the disease, an OT would be focused on caregiver education.

OT 537 Session 8A Take-Away

     In this class session, we learned about multiple sclerosis and muscular dystrophy. Multiple sclerosis (MS) is a demyelinating disease that is unpredictable and disables the central nervous system. MS is considered an autoimmune disease because the body's own defenses attack the protective myelin covering the CNS. MS is the most common neurological disease in young adults. Symptoms of MS include weakness, intention tremor, nystagmus, Babinski sign, dysphagia, dysmetria, and many more. The focus of OT intervention for clients who have MS would be removing and reducing barriers in order to promote/enable the client to participate in meaningful occupations. OT would also focus on the maintenance of current functional abilities.
     Muscular dystrophy (MD) is caused by muscle being poorly nourished because of degeneration. MD is a result of a change in the muscle itself, and not in the nerve or neuromuscular junction; this distinguished MD from other diseases that cause muscle weakness as a result of nerve damage. The mother carries the gene for MD and passes it along to her child. MD is more common in males because they only have one copy of the dystrophin gene, and if that copy is defective then their muscles are affected. MD is a group of disorders caused by genetic mutations, usually in the dystrophin gene. Dystrophinopathies are the most common, such as Duchenne muscular dystrophy and Becker muscular dystrophy. Duchenne MD is caused by a lack of dystrophin, is very severe, and symptoms usually occur by age 5. Becker MD is caused by a misshapen dystrophin gene, has mild symptoms, and appears between the ages of 10-20. Children with Duchenne MD tend to walk later in life, have a waddling gait, and develop enlarged calves from buildup of fat and fibrotic tissue in their muscles. Gower's sign is a hallmark of Duchenne MD, and it happens when the child is laying on their stomach and they use their arms to help them stand up because of weakened hip and upper leg muscles. Later symptoms of MD include confinement to a wheelchair, respiratory failure, scoliosis, and arrhythmias; this leads to a shorter lifespan. The role of OT for clients with MD is improving breathing, preventing contractures, addressing strength and endurance, mobility, and bathroom modifications so clients can perform meaningful occupations.

OT 537 Case Study: Huntington's Disease

Trey Gray is a former drummer for Brooks and Dunn who was diagnosed with Huntington's Disease in 2003 at the age of 34. Gray lives in Nashville with his wife and 3 children in a two-story home. His occupational roles are father, husband, musician, and producer. He became the national spokesperson for HDSA in 2008. Trey's reason for referral to OT was wanting to maintain memory cognition, muscle memory skills, and increase his ability to concentrate; he owns his own producing company, which is really important to him, so he would like to remain as independent as possible. Trey was healthy before his diagnosis, but his mother and uncle both passed away from Huntington's Disease, so he had a 50/50 chance of getting the disease. His current level of functioning is that he is still independent, but he knows the nature of the disease and that he will need assistance soon. Challenges Trey faces are fatigue, mood swings, memory problems, balance, and using alcohol to cope with the disease. Some of the goals Makayla had for Trey were to drum through one previously known song without mistakes and be fully functional at home because when he is not on tour his main priority is being home with his family. The last information on Trey was from 2008. He wants to live the rest of his life as normal as possible without being in the spotlight.

OT 537 Neuro Note #3: TED Talk on Regeneration of the Brain

I watched a TED Talk given by Siddharthan Chandran who is a neurologist. I watched this talk because we have recently learned, or will learn, about the diseases he discussed, such as dementia and multiple sclerosis. In his talk he wanted to offer hope for people who live with untreatable brain diseases. He used Alzheimer's disease as an example of an untreatable disease. In Alzheimer's there is obvious atrophy, damage, and scarring of the brain that has not been treatable. Chandran stated that there are over 35 million people living with brain diseases and the numbers are rising; this is because people are living longer, so these brain diseases are age-related. There are still no effective treatments for most brain diseases. Chandran said that the brain is made up of four types of cells, and each of the four cells, either alone or together, can go rogue and die; this results in various brain diseases depending on the cell(s) involved. If the dying cell is a motor neuron, then a person will have motor neuron disease, which progresses at a shocking pace. If myelin cells die, then a person will have multiple sclerosis. Chandran stated that the brain can heal itself; it just doesn't do it well enough, which I found really interesting. When we talk about neurodegenerative diseases, we never really consider that the brain could be trying to heal itself. He showed images of a brain of someone with multiple sclerosis, and you can see the lesions; however, there were pale blue areas in the slide that were spontaneous repair of the myelin by stem cells, but the rate of repair was not fast enough to match the progression of the disease. Chandran believes that we can find ways to promote the spontaneous endogenous repair that occurs in small amounts anyway.
Chandran conducted a clinical trial that looked patients with multiple sclerosis to see if stem cells from the bone marrow would grow to protect the nerves. They took bone marrow from a patient with MS and grew stem cells in the lab, and injected those stem cells back into the veins of the patient from which they came. To see if they had been successful, they measured the size of the optic nerve, which is a good thing to measure in patients with MS because they suffer from problems with vision. Before they injected the patients with the stem cells, the optic nerve was shrinking because cells were dying. After injection, they saw an increase in the size of the optic nerve, which showed that the stem cells were working. Chandran and his team showed that it is possible to promote endogenous stem cells to do their job by "waking them up" to make new myelin. Chandran ended is talk by stating the stem cells offer real hope, and after listening to his talk, I agree. In class, we have learned about drugs  and therapies that help with symptoms, but none that cure these neurodegenerative diseases. Stem cells could be the key to unlocking new drugs and therapies that could cure these terrible diseases. As occupational therapists, it is important that we know current research, so that we are able to better help our clients.

Chandran, Siddharthan. (2013, July). Can the damaged brain repair itself [Video file]. Retrieved from
https://www.ted.com/talks/siddharthan_chandran_can_the_damaged_brain_repair_itself#t-938009

OT 425 Take Away from FOCP

I really enjoyed this course and I feel that I learned so much that will help me in my career as an OT. All of the projects and assignments helped me to grow and gain a better understanding of occupational therapy. Learning about the professional roles and responsibilities of an OT was really interesting and important. I really liked learning about the OTPF and the different models of practice and frames of reference because they guide how we think and what we do as occupational therapists. This course overall was a great way to lay the foundation for other classes we will take in the future and to prepare me in becoming and thinking as an occupational therapist.

OT 537 Case Study: Guillain-Barre Syndrome

Guillain-Barre Syndrome is a disease where your immune system attacks your own nerves, resulting in a lot of pain and intermittent paralysis. Andy Griffith was 57 when he was diagnosed with GBS. His pain started at his legs and worked its way through the rest of his body. People with GBS usually are hospitalized for long-term to help manage pain and other symptoms. Andy's main occupations are acting and singing. Prior to his diagnosis he was functioning at a high level. After his diagnosis, he became very dependent on his wife to help with mobility and ADLs. GBS is believed to be caused by an allergic reaction to viral infections. Andy had a bad case of the flu prior to his symptoms appearing, and that is what is believed to have triggered GBS. Andy's main problems are severe pain, muscle weakness, and bouts of paralysis in his feet and legs. The goals that Alexa had for Andy were very good. Andy's main goal is to get back to acting. An OT would work on pain management techniques to help him participate in his occupations. An OT would also treat his secondary symptoms, such as depression and guilt from not being able to participate in his occupations.

OT 425 Caregivers of Young Children

I read an article recently in "OT Practice" about caregivers of young children. Caregivers focus on caring for those with disability or illness, and caregivers of young children may experience a decline in their physical and mental health. Caregiving is considered an iADL, and becoming a caregiver can bring about a change in their role, routines, and habits, which results in a change in their occupational performance. Work, leisure, and sleep may be interrupted, and these are all things that were an important part of their daily routine before. If the caregiver of a young child experiences a decrease in physical and mental health, then that can also negatively impact the health of the child. Because occupational therapists are holistic and client-centered, we are able to address the needs of caregivers. By looking at the caregivers needs, occupational therapists can improve participation in meaningful occupations, help the caregiver prevent or mange symptoms of mental illness, and improve physical comfort when caring for a child. The priorities of the caregiver also change when caring for a young child. New mothers have an increased risk for a decline in physical health due to forceful exertion, such as picking a baby up out of a crib. Repetition of movements, like rocking and burping a baby, and awkward positioning during bathing and feeding time can result in musculoskeletal disorders. This musculoskeletal pain can therefore negatively impact a caregivers occupational performance. Caregivers will sometimes ignore discomfort until it becomes too much to handle. As occupational therapists, it is important for us to show caregivers good body mechanics, childcare equipment, and environmental modifications that can result in improved occupational performance for the caregiver, as well as safety for both the caregiver and the young child.

OT 537 Case Study: Amyotrophic Lateral Sclerosis

I did my case study on Kevin Turner, who was diagnosed with ALS in May of 2010 at the age of 41. In 2015, Kevin moved in with his parents, along with his wife, because of the fast progression of his disease. Kevin had a history of brain trauma from his years of playing high school, college, and professional football. His brain trauma is what caused his ALS. Kevin's roles were father, husband, coach, and father. His main priorities were seeing his children grow up, and be able to see his son graduate from high school. I did the role of OT at stage 3 of ALS. At stage 3, the client has lost most upper extremity function, respiratory status worsens, and the client becomes more dependent upon a wheelchair. The role of OT at this stage is helping the client adjust to new assistive technology, home modification, and optimizing ROM, strength, and endurance through home exercise programs. In our group discussion we talked about what the role of OT would be in the later stages of the disease. This would be home safety and caregiver education.

OT 425 Therapeutic Relationship

A therapeutic relationship is the interaction between an OT practitioner and a client. This differs from other types of relationships in that therapeutic relationships are a more unidirectional relationship directed toward the client. Therapeutic relationships are very important for facilitating the healing and rehabilitation process, and the main goal of this relationship is for the client to benefit. There are many techniques an OT practitioner can use to develop trust in therapeutic relationships. Consistency, communication, and professionalism are key to developing trust. By following though with plans, being on time, and being honest, trust can be developed between the client and therapist. It is also important to use clear language so the client understands, and address any issue or problems that could develop. Empathy is the ability to place yourself in someone else's shoes to understand their experiences. Being able to empathize with your client is important in building a therapeutic relationship. Therapeutic use of self is using one's interactions for the benefit of relating to someone else. This can be using your own personality, perspectives, insights, and judgements. Desirable qualities for use in the therapeutic relationship are active listening, which involves the therapist listening to the client without judgements, jumping in with advice, or providing defensive replies. Empowerment is another important quality that gives the client power in the decision making process and lets them feel like that have control over their lives. Effective verbal communication helps the therapist to convey thoughts and ask questions in developing intervention plans; it is important to use clear, concise language when speaking with clients who are not familiar with the healthcare environment.

OT 425 Cultural Competence in OT

Culture can be defined as the language, values, traditions, and behaviors held by a group. It is important to consider the connection to values, beliefs, and spirituality in a culture. The culture of OT has changed over time from focused on arts & crafts to the medical model to becoming more holistic. The culture of OT today is holistic, client-centered, empathetic, and occupation-centered. We as occupational therapists can learn culture through observation, practice, continuing education, and fieldwork. Cultural competence is being able to interact with people from all different kinds of backgrounds and strive for a common goal. Language describing cross-cultural practice has changed over time. In the early to mid-1900s, the term most commonly used was cultural tolerance; this term gives off an air of superiority. The term cultural tolerance was then changed to cultural sensitivity, which came off as: "My culture is better than yours, but I'll still be sensitive to yours." Cultural competence started to be used in the mid-1980's in healthcare literature, especially in nursing, social work, and psychology. The term competence is a call for action for movement towards learning about culture and not just being sensitive about it. As occupational therapists, it is important that we look at the bigger picture and widen our scope when it comes to culture. As and OT student/practitioner, I can develop my cultural competence by recognizing my own biases, self-reflection, and exposing myself to different people.

OT 537 Neuro Note #2: TED Talk on Parkinson's disease

I watched a TED Talk called "Simple hacks for life with Parkinson's" given by Mileha Soneji. I chose to watch this talk because of our recent lectures in class on Parkinson's disease. Mileha Soneji has an uncle who was diagnosed with Parkinson's disease. Before his diagnosis, she described him as being playful and always the center of attention. After his diagnosis, he began to hide from people because he didn't want to be noticed. She noticed how much her uncle struggled just to get around using a walker, and she decided she wanted to do something about it. She decided to target small, every day tasks instead of tackling one huge problem; this is something an OT would do. We look at every day tasks that our clients have problems with, and we help them overcome them. Soneji wanted to help her uncle with his tremors first because he didn't want to drink coffee or tea in public anymore because he felt embarrassed. She designed a no-spill cup that deflects the liquid back inside the cup when tremors occur. It looks like a cup any person could use, and she designed it that way so that the person could feel like they blend in. She interviewed her uncle to see what his challenges were. When she realized she was only getting superficial answers, she decided to gain perspective and observe her uncle as he performed his daily routine. One thing she wondered was how her uncle got up and down the staircase, so he showed her. She showed a video during her talk of her uncle walking up and down the stairs with ease. She explained because it was a continuous motion, so his symptoms hardly affected him. Soneji wanted to translate the feeling of walking on stairs to walking on flat land, so she designed a staircase illusion. She showed a video of her uncle walking on the staircase illusion on flat ground, and it was amazing to see how easily he could walk; however, when he got to the end of the staircase illusion he had freezing of gait. So she had the staircase illusion flowing through all the rooms of her uncle's house so he could get around easily. It was really interesting to see the ideas and simple solutions she came up with to help her uncle. We try to make finding solutions so complicated because of the many technological advances we have today. This talk really opened my eyes to see that most problems can be solved with a simple solution, and this idea is something I will carry with me in my career as an OT.

Soneji, Mileha. (2015, February). Simple hacks for life with Parkinson's [Video file]. Retrieved from
        https://www.ted.com/talks/mileha_soneji_simple_hacks_for_life_with_parkinson_s

OT 425: Emerging Areas

Community mobility and older drivers was identified as an emerging niche in productive aging by AOTA in 2011. The number of adults over the age of 65 is doubling by the year 2030. Because the older adult population is increasing, more emphasis is being put on driver safety. Older adults want to maintain their independence for as long as possible, and being able to drive is a big way they can feel independent, which is why they are so reluctant to give it up. Occupational therapists can ensure driver safety by addressing driving and community mobility through occupational analysis, occupational performance, and clinical reasoning. Driver safety for older adults can be done through rehabilitation, making car modifications, or looking at the community for alternate mobility options.

Community mobility and older drivers relates to AOTA's Vision 2025 because it maximizes the well-being and quality of life for the older adult population. If they are able to maintain the ability to safely drive, then we are helping them to continue doing something that brings meaning and value to their lives. Also, we are helping to ensure the safety of not only older adult drivers but other drivers on the road as well, by preventing someone who could be a danger on the road from causing any accidents.

OT 537 Case Study: Parkinson's Disease

Michael J. Fox is a 55 year old male who was diagnosed with Parkinson's disease in 1991. Before his diagnosis he was very active and healthy. His occupations and roles include actor, activist, author, father, and husband. When he was diagnosed, his doctor told him he would be immobile after 10 years, but he is still active and does not show many signs of Parkinson's disease when he is in public. In our discussion, we talked about how speech was his biggest problem. After his diagnosis, he founded the Michael J. Fox Foundation, which funds drug development for Parkinson's disease. He is very passionate about the foundation, but is very private about how the disease is affecting him personally. The role of OT for him would be to make sure he is participating in meaningful occupations such as be with his family, play with his dogs, and remain independent for as long as possible. An OT would also provide help for the caregiver and assist in home modifications.