Neurology - Group 3 - MND.pptx

Motor Neuron Disease Neurology Our Task The local MND group have asked for information on the types of MND, the progression and what OT and SLT can offer them. TO DO: Compare pdf summary on chat gpt What is Motor Neuron Disease? According to ChatGPT Motor Neuron Disease (MND) i...

Motor Neuron Disease Neurology Our Task The local MND group have asked for information on the types of MND, the progression and what OT and SLT can offer them. TO DO: Compare pdf summary on chat gpt What is Motor Neuron Disease? According to ChatGPT Motor Neuron Disease (MND) is a group of neurological disorders that affect the motor neurons, which are the nerve cells responsible for controlling voluntary muscle movements, such as walking, speaking, and breathing. The condition causes the motor neurons to gradually degenerate and die, leading to muscle weakness, loss of muscle control, and eventually paralysis. The National Institute of Neurological Disorders and Stroke MND is defined as “a group of progressive neurological disorders that destroy motor neurons, the cells that control skeletal muscle activity such as walking, breathing, speaking, and swallowing. This group includes diseases such as amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy , Kennedy's disease, and post-polio syndrome” (National Institute of Neurological Disorders and Stroke, 2023) Types of MND Amyotrophic Lateral Sclerosis (ALS) is the most common. ALS is often associated with the most rapid progression of symptoms. Other types include Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), Spinal Muscular Atrophy (SMA). ChatGPT vs Reputable Sources ChatGPT provided a detailed description which was accurate according to the reputable source ChatGPT added to the definition by providing information on the o Types of MND, o Symptoms o Aetiology o Prognosis o Treatment and care The Reputable Source only provided the definition. Multiple searches and sources would have to be consulted to get all the information compiled by ChatGPT. What if we input reputable information into Chat GPT? However, it is important that we acknowledge that when we are communicating with client populations, Often, we learn about the it is important to explain things to conditions we assess and treat them in clear, concise and accessible through journal articles and language. Their understanding of their lectures full of highly-specific, condition and its possible impacts on technical vocabulary. their everyday functioning is a prerequisite to informed decision making about their care and collaborative goal setting. We hypothesised that a potential Often as beginning clinicians, it use of ChatGPT may be can be difficult for us to find the translating the highly technical right words to provide sufficient, language used in the evidence- evidence-based information based literature into digestible without using medical jargon. information for service users  ------ Sources: We input information from these articles into - Communication and cognitive Chat GPT and asked it to present the impairments and health care information in a digestible way for patients with decision making in MND: a narrative MND: review (Paynter et al., 2019) Knowing how MND progresses can help patients and their caregivers understand what to expect during the - Multidisciplinary management of course of the disease. One way to track MND motor neurone disease (Lau et al., progression is through clinical staging. MND affects people differently, and its progression can vary. The 2018) management of symptoms becomes more complex as the disease progresses. Below is a guide to managing - Use of clinical staging in common symptoms at different stages of MND: amyotrophic lateral sclerosis for What is Clinical Staging in MND? phase 3 clinical trials (Balendra et al., 2015) Clinical staging is a system that tracks the progression of MND based on how much different parts of the body are affected. The stages are divided into five levels, with each stage representing a different level of severity. ChatGPT said the Types of Motor Neuron Disease are: Amyotrophic Lateral Sclerosis (ALS) Progressive Muscular Atrophy (PMA) Primary Lateral Sclerosis (PLS) Progressive Bulbar Palsy (PBP) Spinal Muscular Atrophy (SMA) Types of MND Amyotrophic Lateral Sclerosis (ALS) ALS is the most common form, characterized by the degeneration of both upper motor neurons (in the brain) and lower motor neurons (in the spinal cord). This leads to muscle weakness and atrophy, affecting voluntary muscles, including those used for speaking, swallowing, and breathing. Progressive Muscular Atrophy (PMA) This type primarily affects the lower motor neurons, leading to muscle wasting and weakness, often beginning in the limbs. It's less common and progresses more slowly than ALS. Primary Lateral Sclerosis (PLS) Primary Lateral Sclerosis (PLS) PLS affects only the upper motor neurons, leading to stiffness, spasticity, and difficulty with coordination and balance. It progresses more slowly than ALS and may have a better long-term prognosis. Progressive Bulbar Palsy (PBP) PBP affects the brainstem's motor neurons, which control the muscles responsible for speech, swallowing, and breathing. It often leads to difficulty with speaking and eating and can cause severe communication and swallowing difficulties. Spinal Muscular Atrophy (SMA) Although it is considered a form of MND, SMA is genetically inherited and causes muscle weakness primarily in infants and children, although adult-onset SMA can occur as well. The Progression of MND – Five Stages Stage 1: Early Mild muscle weakness and fatigue. Stage 2: Middle Difficulty with movement, speech, and swallowing. Stage 3: Late Significant muscle weakness and breathing problems. Stage 4: End-Stage Severe paralysis, loss of mobility. Stage 5: Terminal Complete paralysis and respiratory failure. Stage 1 of MND - From the Literature Individuals may notice symptoms such as muscle weakness, twitching, or cramping, typically affecting one limb or a specific muscle group. Symptoms may initially be mild and intermittent, often mistaken for normal aging or fatigue. Individuals can generally maintain independence in daily activities and may continue working or participating in hobbies without significant limitations. Early intervention during this stage is crucial for maximising treatment effectiveness and slowing disease progression. Stage 1 of MND - ChatGPT Stage One of MND - ChatGPT Provided a more detailed and descriptive answer Explained the process of MND Gave examples of common symptoms Described each symptoms in detail Provided "important notes" which further condensed the information Explained the diagnosis process and the associated difficulties The literature supported the information provided by ChatGPT Evidence-base made “patient-friendly” by Chat GPT: Stage 1: Symptom Onset This is when the first symptoms of MND appear. It involves dysfunction in one part of the body, such as weakness or difficulty with speech or swallowing. How long does it last?: On average, Stage 1 lasts around 18 months. Management in Early Stage MND: 1. Medication to Slow Progression Riluzole: This medication may help slow disease progression. Liver function tests (LFTs) are required regularly. 2. Speech and Swallowing Speech Therapy: Early involvement of a speech and language therapist can help manage speech changes and swallowing difficulties. Diet Adjustments: Modify the texture of foods (e.g., purees) and use fluid thickening agents to make swallowing easier. Early-Stage Management Contd. 3. Muscle Stiffness (Spasticity) Medications: Muscle relaxants (e.g., baclofen) or gabapentin can help reduce stiffness. Therapy: Regular physiotherapy helps maintain mobility. 4. Mental Health Counselling and Support: Join support groups (e.g., “coffee clubs”) or speak to a psychologist to address anxiety and depression. Antidepressants: Consider medications like SSRIs or SNRIs if mood changes occur. Evidence-base made “patient-friendly” by Chat GPT: Middle Stages of MND Symptoms become more pronounced, including significant muscle weakness, speech difficulty, and possible respiratory issues) stage 2: Involvement of Two Body Regions The disease affects two areas of the body, like both arms, legs, or both speech and swallowing. How long does it last?: This stage usually lasts about 5.5 months. Stage 3: Involvement of Three Body Regions The disease progresses to affect three parts of the body, leading to greater disability. How long does it last?: On average, Stage 3 lasts about 6.7 months. Management in Middle Stages of MND: 1. Respiratory Dysfunction BiPAP: A machine that provides non-invasive ventilation to assist with breathing, particularly during sleep. Breathing Support: Medications like morphine or low-dose benzodiazepines may be used to help with breathing difficulties Management in Middle Stages of MND Contd. 2. Salivation Issues (Sialorrhoea) Medications: Anticholinergic agents (e.g., atropine or glycopyrrolate) can help reduce excessive saliva. Botox Injections: Injected into salivary glands for more effective management. Radiotherapy: Low-dose treatment on the salivary glands can be an option. 3. Pain Management Pain Medications: Over-the-counter pain relief like paracetamol, or stronger options such as opioids, if necessary. Physiotherapy and TENS: Transcutaneous Electrical Nerve Stimulation may be used for pain relief. 4. Mobility and Orthotics Orthoses: Soft collars, wrist-hand braces, and ankle-foot supports help with mobility. Occupational Therapy: Help with home adaptations and self-care tasks.  Symptoms significantly affect daily function, including severe weakness, inability to speak or swallow, and difficulty breathing Stage 4A: Need for Feeding Tube (Gastrostomy) In this stage, swallowing becomes very difficult, Evidence-base made and a feeding tube is needed for nutrition. “patient-friendly” How long does it last?: Stage 4A lasts about 5.9 by Chat GPT: months. Late Stages Stage 4B: Need for Breathing Support of MND Breathing difficulties become severe enough that non-invasive ventilation (like a breathing mask) is required to help with breathing. How long does it last?: This stage lasts around 3.2 months on average. Stage 5: Death This is the final stage of MND when the body is no longer able to function independently. Management in Late Stages of MND 1. Feeding and Nutrition PEG or RIG Tube: If swallowing becomes very difficult, a feeding tube (PEG or RIG) may be inserted for nutrition. Dietitian Support: Early referral to a dietitian can ensure proper nutrition, especially as weight loss becomes a concern. 2. Respiratory Support BiPAP and Oxygen Therapy: Use of respiratory support is essential to manage breathing problems. Mucolytic Agents: Nebulized saline, N-acetyl cysteine, or other medications may be used to help with thick mucus. 3. Swallowing and Communication Speech Therapy: For swallowing difficulties, continue modifying diet consistency (e.g., purees, thickened fluids). Communication/ AAC Tools: Voice amplifiers, communication boards, and apps, such as Speak Unique or TD Snap can aid in communication if speech becomes difficult. Management in Late Stages of MND Contd. 4. Pain and Comfort Palliative Care: Involvement of a palliative care team can help manage symptoms like pain, difficulty breathing, and emotional distress. Medication: Stronger pain relief, including opioids or muscle relaxants, can be used to manage symptoms. 5. Mental Health and Emotional Support Psychiatric Support: As cognitive changes and emotional lability (mood swings) may become more pronounced, involvement of psychiatry or counselling can be helpful. Support Groups: Ongoing support from family, friends, and patient care groups becomes even more critical. Additional Considerations at Any Stage of MND Mobility and Social Support Mobility Parking and Transport: Programs like taxi subsidies or the companion card can provide support for daily travel. Community Resources: Community palliative care, occupational therapy, and social services can assist with daily living needs. Genetic Counselling Genetic Testing: For those with a family history of MND, genetic counselling and testing may help provide information and support for planning future care. Dry Mouth (Xerostomia) Hydration: Keeping hydrated helps manage dry mouth. Saliva Substitutes: Artificial saliva or pro-cholinergic medications like pilocarpine may help manage this condition. Key Points About MND Progression No Reversing Stages: Once a person moves from one stage to the next, they don’t go backward. MND is a progressive disease, which means it moves forward, not backward. Different Rates of Progression: Some people progress faster or slower than others. Each person’s experience with MND is unique. Impact of Bulbar-Onset MND: People with bulbar-onset MND (when symptoms first affect speech or swallowing) often take longer to reach the final stages compared to those with limb- onset MND (when symptoms first affect the arms or legs).  Why Staging Matters in Treatment Understanding which stage a person is in can help doctors, patients, and families make decisions about care and treatment. Prolonging Quality of Life: Treatments in earlier stages can potentially help people maintain better function and quality of life for longer. Clinical Trials: If you're involved in a clinical trial, knowing your clinical stage helps researchers understand how effective a drug might be in different stages of MND. Tracking Progress: Knowing your stage gives you a clearer picture of your condition, helping you and your caregivers plan the best possible care. Talking to Your Doctor If you or a loved one has been diagnosed with MND, discussing the stage of the disease with your doctor is essential. Understanding your clinical stage can help guide your care and treatment decisions. Make sure to ask about the duration of each stage and how it relates to your symptoms and progression. onal the nd MND Occupational Therapy and MND The role of an OT focuses on maximizing independence, improving quality of life, and adapting the environment to support the individual as their physical abilities change. Key aspects of their role include: Assessment of Functional Abilities: Adapting the Environment Assistive Devices Enhancing Independence Pain and Fatigue Management Caregiver Support:  International Alliance of ALS/MND Association Discusses how the OT and MDT support effects of MND can people with challenges impact the ability to in perform “automatic” or mobility “simple tasks” household tasks self-care activities Lists the tasks that will environmental be affected modification work Suggest tools, devices, socialisation and equipment that are available communication  ChatGPT Mentioned maintaining independence and QOL Listed possible interventions Described what is involved in each intervention Clear ChatGPT vs To the point Reputable Source International Alliance of ALS/MND Association Focused only on doing daily tasks Didn’t consider the later stages of the disease Clear and easy to read Identified areas of difficulty and assistive methods  ChatGPT An occupational therapist (OT) plays an essential role in the care of people with Motor Neuron Disease (MND), which is a progressive neurodegenerative condition that affects the nerves controlling voluntary muscles. The role of an OT focuses on maximizing independence, improving quality of life, and adapting the environment to support the individual as their physical abilities change. Key aspects of their role include: Assessment of Functional Abilities: OTs assess the individual's current abilities, limitations, and needs in daily activities such as dressing, cooking, bathing, and mobility. This helps to identify areas where support or modifications are needed. Adapting the Environment: OTs recommend modifications to the home and workplace, such as installing grab bars, ramps, or adjusting furniture to make it easier for the person to move around. They might also suggest specialized equipment like powered wheelchairs, hoists, or adaptive kitchen tools. Assistive Devices: OTs recommend and provide training on using assistive devices to help with daily tasks. These devices might include adaptive utensils, button hooks, or speech-generating devices, depending on the individual’s needs. Enhancing Independence: OTs work with people with MND to help them maintain as much independence as possible, teaching compensatory strategies for performing tasks as muscles weaken. For example, they may teach techniques for conserving energy or modifying movements to reduce strain. Pain and Fatigue Management: As MND can cause pain, fatigue, and muscle  Speech and Language Therapy and MND According to Chat GPT: A speech and language therapist (SLT) can provide crucial support to individuals with motor neuron disease (MND) in several ways, focusing on communication and swallowing difficulties that often arise as the disease progresses. Here's what they can offer: 1. Assessment and Diagnosis Speech and Communication: They assess the individual’s ability to speak, articulate, and use language. MND can affect the muscles that control speech, leading to slurred or softer speech. An SLT can identify these changes early and help plan interventions. Swallowing (Dysphagia): SLTs evaluate the ability to swallow safely. MND can weaken the muscles involved in swallowing, leading to choking or aspiration. They will assess the risk of aspiration (food or liquid entering the lungs) and provide strategies to make swallowing safer. 2. Speech Therapy Techniques for Clearer Speech: SLTs teach strategies to help individuals speak more clearly and conserve their energy. These could include breathing exercises, vocal exercises, and adjusting the volume or rate of speech. Communication Aids: As the disease progresses, traditional speech may become more difficult. SLTs can recommend alternative communication aids, such as voice amplifiers, communication boards, or computer-assisted devices like speech-generating devices or apps. 3. Swallowing Therapy Safe Eating and Drinking: They can provide advice on how to modify food textures and liquids to prevent choking, and recommend safer positioning during meals. Exercises: SLTs might teach exercises to strengthen the swallowing muscles and improve coordination. Dietary Recommendations: They may collaborate with dietitians to ensure proper nutrition while minimizing swallowing difficulties. 4. Alternative Communication Strategies As MND progresses and speech becomes more difficult, SLTs can help individuals transition to using technology for communication, including: Augmentative and Alternative Communication (AAC) Devices: These include text-to-speech systems, eye-tracking devices, or software on tablets that allow people to "speak" using their eyes or hands.  Chat GPT mentioned using communication devices but did not specifically mention voice banking. What did Voice banking allows those living with Motor Chat GPT Neurone Disease (MND) to create a personalised synthetic voice. not mention We use the term voice banking to refer to the in terms of service and the process of making recordings of words or phrases, ideally prior to changes in SLT? - Voice speech production, to produce a personalised synthetic voice that is subsequently used on a Banking communication aid. Speak unique is an example of a website. Often this is offered to clients in the early stages of MND as ‘vocal insurance’ due to the risk of communication difficulties. Clients will then have a synthetic voice similar to their own, created so that they can use it in the future if they can no longer use their own voice.  Charlie Bird By sharing his experiences of living with MND, Charlie Bird demonstrated the positive impact a high-profile broadcaster can have on public health awareness. A study investigated google trends mentioning MND and found that after Charlie Birds announcement of his diagnosis and his appearance on The Late Late Show there was a large surge of interest into the condition (Curran & Larkin, 2023). Charlie Bird was a huge advocate for voice banking and there was almost 4 decades of his voice available to use to make him a synthetic voice. He openly encouraged others to begin “banking” their words as soon as they can in case there comes a day when they need their voice saved electronically as a back up. Nothing about me, without me: making decisions and the Capacities Act (Oireachtas, 2015) Making decisions about your healthcare is an important part of living with Motor Neurone Disease (MND). The Assisted Decision Making (Capacity) Act (Oireachtas, 2015) states that any person is presumed to have capacity until it is proven otherwise and that a person is not required to prove their capacity. This act contains legislation that governs the medical treatment of all persons; however, it is particularly relevant when treating people with MND, as this population is more vulnerable to having their voices go unheard due to communication difficulties. The presence of cognitive impairments alone is not sufficient to call someone’s capacity into question and should not preclude an individual being the chief decision-maker around their care.  Continuing to make decisions after the onset of bulbar symptoms As MND progresses, people may experience difficulties with speech, movement, or memory, which can affect one’s ability to express themselves and make decisions. Communication and cognitive changes are important to consider when discussing treatment options and healthcare preferences. Autonomy and the ability to make decisions about one’s care is still important, and with the right support, can be maintained throughout MND progression. The person, their caregivers, and their Speech and Language Therapist can work together to ensure they are supported in making informed decisions and may explore the possibility of setting up an Advanced Healthcare Directive. The clinical team must ensure that information provided is accessible and comprehensible, considering any cognitive limitations. The role of the team in supporting autonomy- strategies to help those with MND make their own decisions 1.Allow More Time for Communication It’s important that people with MND have enough time to process and respond to questions. Members of the healthcare team should give one time to express oneself, especially in the case of dysarthria or cognitive difficulties impacting processing and expressive language. 2.Tell You if You Are Not Understood If a healthcare provider is having trouble understanding the person with MND, they should let them know. They will should then work with the person to negotiate a better way to communicate, whether that’s through gestures, writing, or using assistive devices. 3.Use Clear Language and Non-Verbal Communication Healthcare providers should use simple and clear language. They may also use body language or other non-verbal cues to make sure one understands the conversation. 4.Speak Directly with the Person, Not Just Their Caregiver Even if it’s easier for one to communicate with a caregiver, it’s important that the healthcare team speaks directly with the patient about your treatment options and care. It is important the person knows that their voice matters in making decisions about their own health. Creating our Leaflet ChatGPT was unable to generate a poster We came across a new software called DeepSeek and decided to try it out! DeepSeek We tried asking deep seek to generate an informative poster. The software was unable to do so, but gave tips and resources to help us  Canva Both ChatGPT and DeepSeek recommended that we use Canva to create our posters They both provided links to the website They provided us with informative points that we could include in the poster Our experience with ChatGPT ChatGPT provided direct bullet points The points provided by ChatGPT were substantial, containing lots of information All relevant information, which would usually have to be sourced from several parties, was condensed into one answer Capacities Quiz - Ask students basic questions- with two different options and an option to say “I don’t understand” - But ask the questions in an inaccessible way- in Polish, with tiny text that they cannot read, giving them less than a second to read the question and select an answer, with excessive distractions (noise etc.) - If the students select “I don’t understand” or the wrong answer, then tell them they do not have the cognitive capacity to make their own decisions - Ask them if they think that that was fair- why/why not? - Make the point that it is unfair to present information in a way that is inaccessible to people with late stage MND- not accounting for visual acuity, processing time, cognitive/language abilities, distractions in environment - Emphasise the role of the SLT and OT in facilitating informed decision making with this population References National Institute of Neurological Disorders and Stroke (2023). Motor Neuron Diseases | National Institute of Neurological Disorders and Stroke. [online] www.ninds.nih.gov. Available at: https://www.ninds.nih.gov/health-information/disorders/motor-neuron-diseases. Vijay Majithia (2024). The Five Stages of Motor Neurone Disease | MND Care. [online] Aspire UK Home Care Services. Available at: https://aspireuk.co.uk/the-five-stages-of-motor-neurone-disease/. www.als-mnd.org. (n.d.). Occupational Therapy and Activities of Daily Living. [online] Available at: https://www.als-mnd.org/support-for-pals-cals/clinical-care/occupational-therapy-and-activities-of-daily-living/.