Awareness

World Parkinson’s Disease Awareness Day 2024

World Parkinson’s Disease Awareness Day Program 2024

Date: April 6th, 2024
Time: 8am to 1 pm (Patient awareness program starts at 10am)
Venue: Centre for Brain Research, Indian Institute of Science, Bangalore

Join Us for a Day of Awareness and Understanding

We are thrilled to invite you to the World Parkinson’s Disease Awareness Program (Official World Parkinson’s Disease Day is on April 11th Annually), an enlightening event dedicated to shedding light on Parkinson’s Disease and its impact on individuals and communities. Hosted at the prestigious Centre for Brain Research, Indian Institute of Science, Bangalore, this program promises to be an enriching experience for all.

What to Expect:

– Informative Talks: Delve into the world of Parkinson’s Disease with insightful talks by medical experts. Learn about the latest advancements in research and treatment options.

– Patient Perspectives: Hear firsthand accounts from individuals living with Parkinson’s Disease. Gain valuable insights into their experiences, challenges, and triumphs.

– Panel Discussions: Engage in thought-provoking discussions on various aspects of Parkinson’s Disease. Explore topics ranging from symptom management to caregiver support.

– Networking Opportunities: Connect with fellow attendees, including scientists, researchers, healthcare providers, patients, caregivers, and members of the general public. Share knowledge, experiences, and resources.

Registration:

Participation in the World Parkinson’s Disease Awareness Program is free and open to all. However, registration is required to ensure a seamless experience for everyone. Reserve your spot today by completing the registration form  – https://forms.gle/9JWdeytHFABH1SP6A

Date and Venue:

Mark your calendars for April 6th and join us at the Centre for Brain Research, Indian Institute of Science, Bangalore. Together, let’s raise awareness, foster understanding, and support those affected by Parkinson’s Disease.

Spread the Word:

Help us reach more people by sharing this event with your friends, family, colleagues, and networks. Together, we can make a difference in the lives of individuals living with Parkinson’s Disease.

Contact Us:

For inquiries or further information, please contact – 7026603300 and ask about the program information

We look forward to welcoming you to this impactful event! – World Parkinson’s Disease Awareness Day 2024

www.movementdisordersclinic.com

Register Here

Program Details

Academic session

Time Topic Speaker
07:45 AM – 08:00 AM Registration
08:00 AM – 08: 20 AM Animal Models in Parkinson’s Disease Dr. Latha Diwakar, Centre for Brain Research, Bangalore
08:20 AM – 08:40 AM Biomarkers in Parkinson’s Disease Dr Albert Stezin, Centre for Brain Research, Bangalore
08:40 AM – 09:00 AM Parkinson’s Genetics in India Dr. Shweta Ramdas, Centre for Brain Research Bangalore
09:00 AM – 09:20 AM Autophagy and Movement Disorders Dr. Ravi Manjithaya, Jawaharlal Nehru centre for Advanced Scientific Research, Bangalore
09:20 AM – 09:40 AM Parkinson’s Disease Current Research in India Dr Phalguni Alladi, NIMHANS, Bangalore
09:40 AM – 10:00 AM What can we do in India on Parkinson’s / Neurodegeneration research in near future Dr. Ramprasad VL, Medgenome Labs, Bangalore
10:00 AM – 10:15 AM Coffee Break

Patients and Caregiver Session

Time Topic Speaker
10:15 AM – 12:00 PM Patients and Caregivers Session
Current Advances in Therapies for Parkinson’s Dr Anish Mehta Associate ProfessorConsultant NeurologistPDF in Movement Disorders Ramaiah Medical College and Hospitals
What can be the future of PD treatment Dr. Srinivas Raju, Consultant Neurologist, Manipal Hospital Hebbal, Bangalore
Speech and Swallowing Therapy – Role in Parkinson Disease management Dr N Shivashankar Sr. Consultant, Speech Pathology and Audiology, Apollo Specialty Hospital, Jayanagar, Bangalore Adjunct Professor, Nitte Institute of speech and hearing, Mangalore. Retd. Professor and Associate Dean, NIMHANS, Bangalore
Brain Donations and Role in research and therapy Dr. Anita Mahadevan, Prof. & HOD, Neuropathology Department, NIMHANS
CBR and it’s Vision Dr. K V S Hari, Director, Centre for Brain Research, IISc, Bangalore
Panel Discussion – Interactions for research and Patient collaborations Dr. Ravi Muddashetty, Dr. Ravi Manjithya, Dr. Ramprasad VL
12:00 PM – 1:30 PM Patient Experiences
How to cope with Parkinson’s Disease Prof. Mahadevan, IIsc Faculty & PwP
Young onset Parkinson’ disease – How i came over the hurdles Harish Kulkarni, Senior Manager, Capegemini, India & PWP
How to plan yourself when you have Parkinson’s disease Geetha R, Health CoordinatorPeople’s Health Movement National Trainer for Adolescent Health Consultant Women’s and Children’s Health & PwP
Women and Young Onset Parkinson’s Disease Dr Prathima Kadiyala, MRCP(UK) ,Diploma in Dermatology, (UK) General physician and skin care Tirupati & PwP
1:00 PM – 1:30PM Question and Answers
13:30 – 14:00 Lunch and Validection

Speakers

For Scientific Session and Public Awareness Session

Dr Shivashankar

Dr Shivashankar

Dr N Shivashankar
Sr. Consultant, Speech Pathology and Audiology, Apollo Specialty Hospital, Jayanagar, Bangalore
Adjunct Professor, Nitte Institute of speech and hearing, Mangalore.
Retd. Professor and Associate Dean, NIMHANS, Bangalore

Geetha R, PwP & Health Co-ordinator

Geetha R

Geetha R

Health Coordinator

People’s Health Movement

National Trainer for Adolescent Health

ConsultantWomen’s and Children’s Health

Harish Kulkarni, IT professional & PwP

Harish Kulkarni

Harish Kulkarni,

Senior Manager, Capegemini, India

PWP

Dr. Anish Mehta

Dr. Anish Mehta

Dr Anish Mehta
Associate Professor
Consultant Neurologist
PDF in Movement Disorders
Ramaiah Medical College and Hospitals

Dr Latha Diwakar

Dr. Latha Diwakar

Dr Latha Diwakar

Senior Scientific Officer

Centre for Brain Research, IISc, Bangalore.

Dr. Albert Stezin

Dr. Albert Stezin

Dr. Albert Stezin

Scientific officer,

Centre for Brain Research, IISc, Bangalore

Dr. Ramprasad VL

Dr Ramprasad VL

Dr. Ramprasad VL

CEO and Principal Scientist

Medgenome Labs Pvt Ltd, Bangalore, India

Dr Srinivas Raju

Dr Srinivas Raju

Dr Srinivas Raju

Consultant Neurologist,

Manipal Hospital, Hebbal, Bangalore

Dr. Ravi Muddashetty

Dr Ravi Muddashetty

Dr. Ravi Muddashetty

Centre for Brain Research, IISc, Bangalore

Dr Ravi Manjithaya

Dr Ravi Manjithaya

Dr. Ravi Manjithaya

Neurosciences Chair

Jawaharlal Nehru Centre for Advanced Scientific Research (JNCASR)

Bangalore, India

Dr Anita Mahadevan

Dr Anita Mahadevan

Dr Anita Mahadevan

Prof. & Head – Department of Neuropathology,

In-charge – Human Brain Bank, NIMHANS

NIMHANS, Bangalore, India

Dr Prathima Kadiyala, PwP

Dr Prathima Kadiyala

Dr Prathima Kadiyala, PwP

MRCP(UK), Dipoloma in Dermatology,(UK) General physician and skin care

Tirupati & P

Dr Phalguni Alladi

Dr Phalguni Alladi

Dr. Phalguni Alladi

Department of Clinical Psychoparmacology and Neurophysiology

NIMHANS, Bangalore, India

Dr Mahadevan, Pwp

Dr Mahadevan

Dr Mahadevan, Pwp

IISc, Bangalore

Prof. KVS Hari

Prof. KVS Hari

Prof. KVS Hari

Director, Centre for Brain Research, IISc, Bangalore

Event Co-ordinators

Patient / Care Giver / Public co-ordinators: Mr. Rajiv Gupta, Dr. Prathima Kadiyala, Mr. Gokul Casheekar, Dr. Rosy Neupane, Mr. Punit, Mrs. Anjali

Scientific Co-ordinators:  Dr. Ravi Muddashetty, Dr. Ravi Manjithaya, Dr. Prashanth LK, Dr. Guruprasad, Dr. Kuldeep Shetty, Dr. Srinivas Raju

Supported By

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news

Parkinson’s and Driving: Fitness Evaluations and Safe Driving Practices

Are you or a loved one navigating the challenges of Parkinson’s Disease while trying to stay safe behind the wheel? Driving represents freedom and independence, but when Parkinson’s enters the equation, it brings a host of questions and concerns. How does Parkinson’s affect driving ability? What assessments can ensure safety on the road? Dive into our comprehensive guide, where we unravel the mysteries of driving with Parkinson’s, from essential evaluations to adapting for safety. Stay tuned as we steer through the turns and traffic lights of Parkinson’s and driving, ensuring you’re equipped to navigate this journey with confidence and care.  These are primarily created based upon a recent systematic review in Movement Disorders journal (2024 March).

  1. How Common Are Driving-Related Issues Among Individuals with Parkinson’s Disease?

Driving-related issues are relatively common among individuals with Parkinson’s Disease (PD), significantly affecting their independence and quality of life. The article highlights that a meta-analysis found PD patients, especially those with an average disease duration of 6.7 years, are more likely to fail an on-road driving test and have over a two-fold increase in crash risk in driving simulator tests compared to healthy counterparts. Additionally, it notes that PD patients exhibit a gradual deterioration in their driving abilities and tend to cease driving earlier than those without the condition.

The combination of PD’s motor symptoms (like bradykinesia, rigidity, and tremors), cognitive impairments (such as issues with executive functioning and spatial awareness), and the effects of medication (including drowsiness or sudden sleep onset) all contribute to the challenges faced by individuals with PD when driving. These factors underscore the importance of regular and comprehensive evaluations of driving fitness for people with PD to ensure safety on the road.

  1. Why Do People with Parkinson’s Disease Face Difficulties in Driving?

Individuals with Parkinson’s Disease (PD) encounter driving difficulties due to a combination of motor and non-motor symptoms, as well as the side effects of medications used to manage the condition. The motor symptoms include bradykinesia (slowness of movement), rigidity, rest tremor, and postural instability. These symptoms can impair physical abilities necessary for driving, such as steering, braking, and accelerating.

Non-motor symptoms that affect driving include cognitive impairments, which might involve challenges with attention, decision-making, and spatial awareness. Neuropsychiatric symptoms, such as depression and anxiety, can also impact driving abilities. Furthermore, sleep disorders associated with PD, like excessive daytime sleepiness, can make it dangerous to drive.

The medications prescribed for PD, while essential for managing symptoms, can have side effects like sudden onset of sleep, which poses a significant risk for driving. The complex interplay of these factors contributes to the driving difficulties experienced by people with PD, making it crucial to assess their driving fitness regularly.

  1. What are the potential risks for driving with Parkinson’s Disease?

Driving with Parkinson’s Disease (PD) comes with potential risks due to the symptoms of the condition and the side effects of medications used in its management. Here’s a simplified overview of these risks:

  1. Motor Skills Impairment: PD can cause tremors, stiffness, and slowness of movement, making it hard to steer, accelerate, or brake quickly when needed.
  2. Cognitive Changes: PD can affect memory, attention, and problem-solving skills, which are crucial for navigating, responding to unexpected events, and making split-second decisions on the road.
  3. Visual Disturbances: Some people with PD experience vision problems, such as difficulty with depth perception and contrast sensitivity, making it harder to see road signs, signals, and obstacles.
  4. Sudden Onset of Sleep: Medications for PD, especially dopamine agonists, can lead to sudden sleepiness or even sleep attacks, which can occur without any warning, posing a significant risk while driving.
  5. Fluctuating Symptoms: PD symptoms can fluctuate throughout the day, with periods of better or worse motor function. This unpredictability can affect driving abilities at different times.
  6. Impaired Reaction Time: PD can slow physical and mental reactions, delaying responses to traffic lights, other vehicles, pedestrians, or unexpected hazards.

Understanding these risks is essential for individuals with PD, their families, and healthcare providers to make informed decisions about driving. Regular evaluations and adjustments to driving habits or the decision to stop driving may be necessary to ensure safety.

  1. Do Countries Have Official Driving Guidelines for People with Parkinson’s Disease?

Yes, several countries have officially established guidelines for evaluating and managing the driving abilities of individuals with Parkinson’s Disease (PD). According to the systematic review covered in the article, nine national guidelines were identified from seven different countries. These countries are Australia, Canada (which has two separate sets of guidelines from different organizations), Ireland, New Zealand, Singapore, the United Kingdom, and the United States (also with two distinct guidelines from different entities). These guidelines aim to assess the fitness to drive of individuals with PD, considering the unique challenges posed by the condition.

  1. What Specific Tests Are Used in the Assessment of Driving Fitness for Parkinson’s Disease Patients?

In evaluating the driving fitness of individuals with Parkinson’s Disease (PD), several specific tests are recommended to comprehensively assess motor, cognitive, and visual abilities. These tests aim to determine a person’s capability to drive safely. Here’s a breakdown of these tests in layman’s terms:

  1. Motor Assessment Tests:
    • Rapid Paced Walk Test (RPWT): This test checks how quickly and safely a person can walk a short distance. It helps understand the person’s mobility and balance, which are crucial for operating pedals and getting in and out of a car. (https://icsw.nhtsa.gov/people/injury/olddrive/safe/01c02.htm ) The RPWT is valuable because it is quick, easy to administer, requires minimal equipment, and can be performed in various settings. While it directly assesses walking ability, the insights gained can indirectly inform evaluations of driving fitness by indicating the level of physical function and mobility.
    • Manual Tests of Motor Strength and Range of Motion: These involve simple exercises to assess the strength of arms and legs, and how well a person can move their joints. Such movements are vital for steering, turning, and using car controls.
  1. Cognitive and Neuropsychological Tests:
    • Trail Making Test-B (TMT-B): This paper-and-pencil test involves connecting numbered and lettered dots in a specific order as quickly as possible. It evaluates a person’s ability to switch attention between tasks, a skill needed for keeping track of road conditions, navigation, and responding to unexpected events.
    • Clock Drawing Test: In this test, the person is asked to draw a clock showing a specific time. It checks spatial awareness and the ability to plan and execute a task—key for understanding road signs and making turns.
    • Mini-Mental State Examination (MMSE): This brief 30-point questionnaire assesses various cognitive functions, including arithmetic, memory, and orientation, indicating the overall cognitive ability that impacts decision-making while driving.
  2. Visual Assessment Tests:
    • Visual Acuity Test: This test, often done using an eye chart, checks how clearly a person can see at distances, critical for reading road signs and seeing obstacles.
    • Visual Fields Test: This evaluates the full horizontal and vertical range of what a person can see without moving their eyes, important for detecting vehicles, pedestrians, and other objects in peripheral vision.
    • Contrast Sensitivity Test: This measures how well a person can distinguish between objects and their background, especially in poor light, fog, or glare, which affects night driving and driving under challenging weather conditions.

These evaluations are typically conducted in a clinical setting by healthcare professionals, including neurologists, occupational therapists, and sometimes driving specialists. The aim is to ensure that individuals with PD can meet the demands of safe driving or identify areas where adaptations might help. Regular reassessment is recommended to account for the progressive nature of PD and its impact on driving skills.

 

  1. What Are the Red Flags Indicating That a Person With Parkinson’s Disease May Not Be Fit to Drive?

For individuals with Parkinson’s Disease (PD), certain “red flags” signal that driving may no longer be safe. These indicators are critical for evaluating when it might be time to reassess driving abilities or consider stopping driving altogether. Here’s a simplified explanation of these warning signs:

  1. Motor Function Impairment: Difficulty with movements, such as stiffness or tremors, that could affect the ability to steer, brake, or accelerate smoothly.
  2. Cognitive Decline: Issues with memory, attention, problem-solving, or multitasking that impair the ability to navigate, respond to road signs, or make quick decisions in traffic.
  3. Visual Impairments: Problems with seeing clearly, judging distances, or having a limited field of vision, making it hard to spot vehicles, pedestrians, or obstacles.
  4. Increased Reaction Times: Slower responses to unexpected events, such as needing to brake suddenly or react to a traffic signal change.
  5. Medication Side Effects: Experiencing sudden sleepiness, dizziness, or other effects from PD medications that could impair driving at any moment.
  6. History of Close Calls or Minor Accidents: An increase in “near misses,” fender benders, or trouble with parking could indicate declining driving skills.
  7. Feedback from Others: Concerns expressed by family members, friends, or others about the individual’s driving performance or safety.
  8. Feeling Anxious or Overwhelmed While Driving: Increased stress or discomfort when driving, especially in complex situations like heavy traffic or unfamiliar areas.
  9. Difficulty with Driving Tasks: Problems with tasks that used to be easy, such as making turns, merging onto highways, or maintaining lane position.
  10. Navigational Challenges: Getting lost, even in familiar areas, or difficulty following directions due to cognitive decline.

Recognizing these red flags is crucial for ensuring the safety of the driver with PD, their passengers, and others on the road. Regular assessments by healthcare professionals can help monitor these factors and make informed decisions about driving fitness.

  1. How should a person with Parkinson’s Disease evaluate for his driving fitness?

Here’s a simplified explanation of how someone with Parkinson’s Disease (PD) should go about testing for driving fitness, :

  1. Start with Your Doctor: The first step is to talk to the doctor treating your PD, usually a neurologist. They know your health history and how PD affects you, making them a good starting point for evaluating your driving fitness.
  2. Check Your Physical Abilities: You might be asked to perform certain physical tasks to see how well you can move. This could include walking quickly or showing how strong and flexible your arms and legs are. These tests help determine if you can control a car safely.
  3. Assess Your Thinking Skills: Since driving requires quick thinking and problem-solving, your doctor might also check your cognitive abilities. This could involve tests where you connect dots, draw a clock, or remember lists of words. These tests check your ability to pay attention, make decisions, and remember important information while driving.
  4. Evaluate Your Eyesight: Good vision is crucial for driving, so your eyesight will be checked. This can include reading letters from a distance (like a standard eye chart test), checking your peripheral vision, and perhaps assessing how well you see contrasts, which is important for driving at night or in poor weather.
  5. Consider PD Symptoms and Medication Side Effects: Your doctor will think about how your PD symptoms and the side effects of your medication might affect your driving. For example, if your medication makes you drowsy, this is important to consider.
  6. Undergo Specialized Driving Tests if Needed: Based on these evaluations, your doctor might suggest a specialized driving test. This can be a practical test in a car to see how well you handle actual driving situations.
  7. Follow-Up Tests: Since PD can change over time, you might need to go back for regular check-ups to make sure you can still drive safely.
  8. Make Adjustments as Needed: If the tests show that driving could be risky for you or others, your doctor might suggest ways to adjust. This could mean driving only during the day, using special equipment to make driving easier, or exploring alternatives to driving.

In simple terms, testing for driving fitness in PD involves a combination of medical evaluations, physical and cognitive tests, and practical driving assessments, all aimed at ensuring you can drive safely without putting yourself or others at risk.

  1. Where can someone read about ‘Fitness for Driving’ in Parkinson’s Disease?

Here’s a suggested list of resources and types of documents where you can learn more about driving guidelines for people with Parkinson’s Disease:

  1. National Guidelines: Look for guidelines issued by national health or transportation authorities in various countries, such as Australia, Canada, Ireland, New Zealand, Singapore, the United Kingdom, and the United States. These guidelines provide country-specific recommendations for evaluating driving fitness in individuals with PD.
  2. Recommendation Papers from Professional Associations: Papers published by associations like the American Academy of Neurology (AAN) often provide evidence-based recommendations for clinicians assessing the driving capabilities of their patients with PD.
  3. Consensus Statements: Documents like consensus statements from expert panels offer agreed-upon guidance based on the latest research and expert opinion. These can help in understanding the collective stance on driving assessment procedures and criteria for people with PD.
  4. Research Studies on Driving and PD: Academic journals and medical research platforms often publish studies on the effects of PD on driving, evaluation methods, and intervention outcomes. These studies can provide data-driven insights into the challenges and solutions related to driving with PD.
  5. Resources from Parkinson’s Disease Foundations and Associations: Organizations dedicated to PD support and research, such as the Parkinson’s Foundation, Michael J. Fox Foundation for Parkinson’s Research, and Parkinson’s UK, may offer resources, guides, and articles on driving with PD.
  6. Government and Transportation Department Websites: Many countries’ transportation or road safety departments provide guidelines and resources for drivers with medical conditions, including PD. These resources can offer practical advice and legal considerations for driving with a health condition.
  7. Occupational Therapy and Driving Rehabilitation Resources: Organizations specializing in occupational therapy and driving rehabilitation may offer resources on adaptations, evaluations, and training programs to support safe driving among individuals with PD.
  8. Online Forums and Community Support Groups: Online platforms and social media groups for individuals with PD and their families can be a source of shared experiences, tips, and advice on managing driving and PD.

 

  1. How often should a person with Parkinson’s disease undergo a driving assessment?

For individuals with Parkinson’s Disease (PD), the frequency of driving assessments is not one-size-fits-all; it should be personalized based on the progression of their condition, the impact of symptoms on driving abilities, and any changes in treatment. The article suggests that regular follow-up assessments are recommended due to the progressive nature of PD. While a specific timeline isn’t universally mandated, the guidelines suggest a range that could be as frequent as every 6 months to as long as 5 years, depending on individual circumstances.

In practice, the treating physician, often a neurologist familiar with the patient’s condition, plays a crucial role in determining the assessment frequency. They will consider factors such as:

  • The severity and progression rate of PD symptoms.
  • The presence of any cognitive decline or visual impairment.
  • The effects of PD medications on alertness and motor control.
  • Feedback from the patient and family members about driving capabilities.
  • Any recent incidents or near-misses while driving.

Given these variables, the decision on how often to undergo driving assessment should be made collaboratively between the individual with PD, their family, and their healthcare team. This ensures a balance between maintaining independence and ensuring safety on the road for all.

In navigating the journey of driving with Parkinson’s Disease, the road might seem uncertain, filled with caution signs and speed bumps. However, armed with the right knowledge, assessments, and adaptations, it’s possible to maintain independence and safety behind the wheel. Remember, each journey is unique, and staying in tune with your body, seeking regular evaluations, and making informed decisions are key to driving safely with Parkinson’s. As we conclude this guide, let’s embrace the journey ahead with caution, courage, and the confidence that comes from being well-informed. Safe travels!

 

Reading reference:  Stamatelos, P., Economou, A., Yannis, G., Stefanis, L. and Papageorgiou, S.G. (2024), Parkinson’s Disease and Driving Fitness: A Systematic Review of the Existing Guidelines. Mov Disord Clin Pract, 11: 198-208. https://doi.org/10.1002/mdc3.13942

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news

Diet for Parkinson’s: Unveiling the Current Science Behind Your Food Choices

Parkinson’s disease (PD) is a common brain condition that affects many people worldwide and What is a right diet for Parkinson Disease is an enigma.  Some studies have looked at how different diets might affect Parkinson’s Disease and found some interesting connections, but there’s still a lot we don’t know. We do know that many people with PD aren’t getting the right nutrients they need, which can make their health and how they feel worse. So, researchers are trying to figure out if changing what people eat or taking certain vitamins could help them feel better and slow down how fast PD gets worse (What’s the Best Diet for Parkinson Disease? ). This article will talk about what we know so far about how food and supplements might help people with Parkinson’s disease, and what we need to learn more about based upon a recent scientific publication in the Journal of Parkinson’s Disease by Kira Tosfesky.

Dietary Patterns

Mediterranean Diets

Mediterranean diets are all about eating lots of plant-based foods like veggies, fruits, whole grains, beans, and nuts. They also include fish and seafood, a bit of chicken, and some wine. But you eat less red meat, sweets, and sugary drinks. Studies from 2020 to 2023 found that following this diet could lower the risk of getting Parkinson’s disease (PD). One study even showed that men who followed this diet had Parkinson’s symptoms show up later, up to 8.4 years later. These diets are thought to help because they have lots of antioxidants and good fats that protect the brain. However, there haven’t been many big studies testing if this diet can really help people with Parkinson feel better.

MIND Diet

The MIND diet is a mix of the Mediterranean and Dietary Approaches to Stop Hypertension (DASH) diets, made to keep the brain healthy. It says to eat a lot of leafy greens, beans, and berries, but not so much cheese, butter, or margarine. One study found that following the MIND diet was linked to a lower risk of getting parkinsonism, a condition like Parkinson’s disease, and slower symptoms than following the Mediterranean diet. Another study showed that women who followed the MIND diet had Parkinson’s symptoms show up later, up to 17.4 years later. But we still need more research to know for sure if this diet can really help people with Parkinson’s feel better.

Vegetarian and Vegan Diets

Some studies suggest that societies where people mostly eat vegetarian or vegan diets have lower rates of Parkinson’s disease (PD). A study in the UK found that people who ate healthy plant-based diets had a lower risk of getting PD, while those who ate unhealthy plant-based diets had a higher risk. Another study tested a vegetarian diet on 16 patients with PD for 14 days and found that it helped improve their symptoms. But we still need more research to know if these diets can really help people with PD feel better.

Ketogenic diet

The ketogenic diet (KD) is a special diet that is high in fat and low in carbohydrates. This diet might help people with Parkinson’s disease (PD) because it provides a different type of fuel for the brain called ketones. Ketones can help the brain work better when the usual fuel, glucose, doesn’t work as well in PD. Some studies tested this diet on people with PD and found that it might help improve symptoms like movement problems and anxiety. However, some people had more tremors or stiffness when they started the diet, so we need more research to understand if the ketogenic diet is really helpful for everyone with PD.

Protein redistribution diets:

Changing when you eat protein might help people with Parkinson’s disease (PD) get more benefit from their medication. Protein-redistribution diets involve eating most of your protein at dinner and less during the day. Studies on these diets showed that they could reduce movement problems by 32–79% and help with other symptoms too. But some people worry that these diets might make you lose weight or muscle. So, more research is needed to understand if they’re safe and helpful for everyone with PD.

Food Groups

Dairy:

Eating a lot of dairy, like milk, cheese, and yogurt, might have different effects on Parkinson’s disease (PD). Some studies suggest that high dairy consumption could raise the risk of getting PD. However, the type of dairy matters too. Low-fat dairy seems to be linked more strongly to PD risk than full-fat dairy. Ice cream, yogurt, and cheese have been connected to faster PD progression. The reasons behind these connections are not fully understood, but it could be because of certain chemicals in dairy products or pesticides used in farming.

Alcohol:

The relationship between alcohol and PD is mixed. Some studies suggest that moderate alcohol intake might increase the risk of PD in men. But other research shows a U-shaped association, meaning both heavy drinkers and those who don’t drink at all might have higher risks. However, these findings might be influenced by other factors like smoking or personality traits. Some think that the antioxidants in alcohol could protect against PD, but more research is needed to understand how alcohol affects PD risk.

Caffeine:

Drinking coffee and tea with caffeine might help lower the risk of PD and slow down its progression. Caffeine seems to affect certain chemicals in the brain that are involved in PD. However, studies testing caffeine pills alone haven’t shown the same benefits. This suggests that other parts of coffee and tea might also play a role in protecting against PD.

PD-Specific Foods:

Some foods seem to affect how fast Parkinson’s disease progresses. Eating more fresh vegetables, fruits, nuts, fish, olive oil, and spices could slow down the disease. On the other hand, canned fruits and vegetables, fried foods, beef, and dairy products like ice cream and yogurt might make PD symptoms worse. These findings are based on what people with PD have reported, but more research is needed to understand how different foods affect the disease.

Nutritional Supplements

Vitamin D:

Many studies have found that people with Parkinson’s disease (PD) often have low levels of vitamin D. This can affect how severe their symptoms are and even increase the risk of falls. Vitamin D plays an important role in the brain, especially in the area affected by PD. Some studies have tested giving extra vitamin D to people with PD, but so far, it doesn’t seem to have a big effect on symptoms. However, it’s still important for people with PD to make sure they get enough vitamin D to keep their bones healthy.

Vitamin E and Omega-3 Fatty Acids:

Vitamin E and omega-3 fatty acids are thought to help with PD because they have antioxidant and anti-inflammatory properties. Some studies have found that taking these supplements can improve PD symptoms and reduce inflammation in the body. Fish oil, which contains omega-3 fatty acids, seems to slow down PD progression according to some studies. But more research is needed to confirm these benefits.

Vitamins B6, B9, and B12:

People with PD often have high levels of a substance called homocysteine in their blood, which can be harmful. Vitamins B6, B9 (folate), and B12 can help lower homocysteine levels. Some studies suggest that taking these vitamins might help prevent or slow down PD, but more research is needed to be sure.

Other Vitamins:

Vitamins B1 (thiamine) and C don’t seem to have a big effect on PD risk, but they might help with symptoms. Thiamine deficiency has been linked to memory problems in PD, while vitamin C might help the body absorb PD medications better.

Fiber, Prebiotics, and Probiotics:

Gut problems are common in PD, so some researchers are looking at how fiber, prebiotics, and probiotics might help. Probiotics, in particular, seem to improve PD symptoms and mood in some studies, but more research is needed to understand their effects fully.

Mucuna Pruriens:

Mucuna pruriens is a plant that contains levodopa, the main medication used to treat PD. Some studies suggest that it might work as well as synthetic levodopa in controlling PD symptoms.

Conclusions

Conclusions:

Diet for Parkinson disease is a common daily enigma for both people with PD and health care professionals. Understanding the role of nutrition in Parkinson’s disease (PD) is crucial for patients, researchers, and doctors. While many studies show a link between diet and PD, there’s a lack of high-quality research, making it hard to give clear recommendations. Challenges in studying nutrition in PD include differences in people’s diets, difficulty in measuring food intake accurately, and the need for long-term studies to see if diets can change the course of the disease. Despite these challenges, some diets like the Mediterranean and MIND diets seem promising for PD. However, more research is needed to confirm their benefits. Certain supplements, like vitamin E and omega-3 fatty acids, may also help with PD symptoms, but more studies are necessary. Other dietary factors, such as alcohol and dairy, have mixed evidence regarding their impact on PD risk and progression. While probiotics show promise in managing PD symptoms, more research is needed to understand their effectiveness fully. Overall, nutrition plays a crucial role in PD management, but more research is needed to provide clear guidelines and overcome barriers to dietary changes for patients.

Reference Publication : 

Tosefsky, Kira N. et al. ‘The Role of Diet in Parkinson’s Disease’. 1 Jan. 2024 : 1 – 14.

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Awareness

Unveiling the Silence: Bridging the Gap in Disclosing Aging-Related Disorders

In the realm of health narratives, there exists a stark contrast between Western societies and the Indian subcontinent ( Parkinson’s disease awareness India celebrity endorsement )when it comes to the openness surrounding aging-related disorders. While the Western world has seen public figures bravely and transparently sharing their battles with conditions like Parkinson’s disease and dementia, a notable silence shrouds a similar dialogue in India. Despite a population of comparable magnitude, individuals who have reached pinnacles in their respective fields often navigate their journeys with aging-related disorders discreetly. This prompts a crucial exploration into the factors contributing to this disparity and begs the question: Why does a culture that thrives on collective strength find it challenging to put a face on aging-related health struggles?

Untangling the Threads: Unraveling the Silence in India

While Western societies have witnessed a surge of notable figures championing the cause of aging-related disorders, one cannot help but notice the conspicuous void in the Indian narrative. Michael J. Fox, the iconic actor, and advocate, boldly embraced his journey with Parkinson’s disease, establishing himself as a global symbol of resilience. His foundation, dedicated to Parkinson’s research, stands as a testament to the transformative power of public disclosure. Similarly, personalities like Glenn Campbell and Terry Jones, facing Alzheimer’s and dementia, have not only shared their personal battles but also actively contributed to awareness and research.

On the flip side, the Indian landscape seems relatively muted in these discussions. The absence of comparable figures taking the lead in initiating conversations around aging-related disorders prompts a crucial question: Is the void a reflection of an actual dearth, or does it point toward the need for a cultural shift, where open dialogue becomes the norm rather than the exception?.

Bridging the Divide: Western Advocacy vs. the Indian Void

In the heart of this disparity lies a complex interplay of cultural nuances, societal expectations, and deeply ingrained norms surrounding privacy. The cultural fabric in India often weaves a narrative of strength, resilience, and reverence for age. Individuals who have attained eminence in their fields may find themselves caught in the dichotomy of upholding these cultural values while confronting the vulnerability that accompanies aging-related disorders. This cultural reticence, coupled with the fear of perceived weakness or an expectation to exude unwavering strength, may contribute to the reluctance in openly sharing health struggles. As we navigate these intricacies, it becomes evident that addressing the silence surrounding aging-related disorders requires not just individual courage but a broader societal shift in perceptions.

Exploring the Silence: Factors Influencing Concealment

The disparity becomes evident when one scans the global landscape, finding Western luminaries openly discussing their encounters with aging-related disorders. Meanwhile, in India, where accomplished individuals wield significant influence, a shroud of secrecy surrounds similar health battles. One might wonder about the underlying factors steering this reluctance. Is it cultural reticence, the fear of perceived vulnerability, or perhaps a deeply ingrained societal expectation of invincibility, especially for those who have reached the zenith of their professions? As we unravel these threads, it becomes essential to examine how cultural norms, societal expectations, and personal privacy intertwine to create an environment where aging-related health struggles often remain hidden.

Empowering Voices: The Ripple Effect of Openness

When individuals with aging-related disorders step into the light and share their narratives, a profound ripple effect occurs. Beyond personal catharsis, these stories have the potential to transform societal perceptions, erode stigma, and ignite a dialogue that resonates with millions facing similar challenges. The power of personal narratives extends beyond individual experiences; it becomes a catalyst for widespread awareness, fostering empathy, and inspiring collective action. Moreover, the impact goes beyond awareness as it lays the foundation for advocacy, research initiatives, and a collaborative effort to reshape how society views and addresses aging-related disorders.

  1. How Can Individuals Open Up?

Individuals with aging-related disorders possess the agency to break the silence. By sharing their stories, they not only embark on a personal journey of empowerment but also contribute to a collective narrative that challenges stereotypes and sparks essential conversations.

  1. What Could Openness Achieve?

The potential benefits of openness are vast. Beyond personal empowerment, openness can reshape societal attitudes, drive awareness, and fuel advocacy efforts. It has the power to inspire research initiatives, facilitate early detection, and ultimately contribute to the global endeavor of finding effective therapies and cures.

Empowering the Future: Merging Ancient Wisdom with Modern Advocacy

As we reflect on the journey toward destigmatizing aging-related disorders in India, it’s essential to draw inspiration from the rich tapestry of the nation’s history. Ancient Indian science, with luminaries like Charaka, Sushruta, and Aryabhata, laid the foundation for significant advancements in medicine and mathematics. The profound knowledge embedded in the Vedas continues to garner acknowledgment and validation.

In the current landscape, where India is making strides in various fields, from technology to healthcare, the potential for transformative impact is immense. The acknowledgement of aging-related disorders by the current generation is not merely a personal disclosure; it is a beacon that can illuminate the path toward collective understanding, awareness, and research.

By aligning with the spirit of ancient Indian knowledge that valued holistic well-being, individuals who choose to openly discuss their aging-related struggles contribute to a legacy of progress. Their stories become integral to a modern narrative that combines the wisdom of the past with the urgency of the present. This isn’t just about personal empowerment; it’s about fostering a cultural shift that values openness and leverages collective strength to address the challenges of aging-related disorders.

In this moment of renaissance, where the importance of mental and physical well-being takes center stage, the current generation in India ( Parkinson’s disease awareness India celebrity endorsement )has the opportunity to be pioneers in fostering a new era of understanding. By creating awareness, supporting research, and sharing personal experiences, individuals can contribute to a global dialogue that transcends cultural boundaries, ultimately benefiting millions in India and beyond.

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news

Ten Questions Will Answer: Can My Genes (DNA) Predict My Parkinson’s Destiny?

Unlocking the Parkinson’s Code: Will I Inherit Parkinson? Is It In Your Genes? Discover the Secrets of Your Genetic Destiny – Your Inheritance, Your Risk, and the Probability of Parkinson’s Unveiled! Dive into the genetic puzzle of Parkinson’s with these 10 crucial questions –  Empower yourself with a clearer understanding of the genetic probabilities surrounding Parkinson’s disease.

1. Can I get Parkinson's disease if one of my parents has it? (Will I Inherit Parkinson?)

While having a parent with Parkinson’s disease may slightly increase your risk, most people with a parent with Parkinson’s do not develop the condition. Many factors contribute to Parkinson’s, and it’s not solely determined by genetics.

2. If one of my parents has Parkinson's disease, should I get genetic testing done to know whether I can get Parkinson's disease?

Genetic testing is not routinely recommended for Parkinson’s disease. While having a parent with Parkinson’s may slightly increase your risk, most cases are not solely determined by genetics. Genetic testing is not a crystal ball, and even if you have a genetic predisposition, it doesn’t guarantee you will develop the condition. If you have concerns, it’s best to discuss them with a healthcare professional who can provide guidance based on your individual situation. Regular check-ups and a healthy lifestyle are essential for overall well-being.

3. What is the probability that genetic testing will help me know whether I will develop Parkinson's disease?

The role of genetic testing in predicting Parkinson’s disease is complex. While certain genetic mutations are associated with an increased risk, having these mutations doesn’t guarantee you will develop the condition. Most cases of Parkinson’s are not caused by a single gene, and environmental factors also play a significant role

Genetic testing can identify specific mutations linked to Parkinson’s, but it cannot provide a definite answer about whether you will develop the disease. It can offer insight into potential risk factors, allowing for better-informed discussions with healthcare professionals. However, the decision to undergo genetic testing should be made in consultation with a healthcare provider, considering individual circumstances and the limitations of current genetic knowledge regarding Parkinson’s disease.

4. What type of mutations can predict that I might be more likely to develop Parkinson's disease?

Certain mutations in specific genes, such as SNCA, LRRK2, and PARK2, have been associated with an increased risk of Parkinson’s disease. However, it’s crucial to understand that having these mutations doesn’t guarantee the development of the condition. These genetic factors contribute to a small percentage of Parkinson’s cases.

In most instances, Parkinson’s disease is considered a complex disorder influenced by a combination of genetic and environmental factors. Genetic testing may identify these mutations, but the interpretation of the results is complex and requires the expertise of a healthcare professional. It’s essential to approach genetic testing with caution and discuss the implications thoroughly with your healthcare provider before making any decisions.

5. Why, despite advances in science, can we not definitively tell whether someone will develop Parkinson's disease or not?

Parkinson’s disease is a complex condition influenced by a combination of genetic and environmental factors. While scientific advancements have allowed us to identify certain genetic mutations associated with an increased risk, these factors are only part of the overall picture.

  1. Genetic Complexity: Most cases of Parkinson’s are not caused by a single gene, making it challenging to pinpoint definitive genetic markers. Multiple genes and their interactions contribute to the risk.
  2. Environmental Factors: Exposure to certain environmental factors, such as toxins or head injuries, also plays a role in Parkinson’s disease. Identifying and measuring these factors accurately is difficult.
  3. Individual Differences: Each person’s genetic makeup and life experiences are unique. Predicting disease development requires considering the interplay of various genetic and environmental factors, making it a highly individualized and intricate process.
  4. Ongoing Research: Parkinson’s disease is an active area of research, and scientists are continually discovering new aspects of its complexity. Our understanding of the disease evolves over time, and predicting individual outcomes remains a challenging task.

In summary, the multifaceted nature of Parkinson’s disease, combined with the intricate interplay of genetic and environmental factors, makes it difficult to definitively predict its development in any given individual. Research is ongoing, and as our understanding grows, we may gain more insights into the factors influencing Parkinson’s disease.

6. Can a genetic testing report confirm that I don't have Parkinson's disease?

No, a genetic testing report cannot definitively confirm that you don’t have Parkinson’s disease. While certain genetic mutations are associated with an increased risk, the absence of these mutations does not guarantee immunity from the condition.

Parkinson’s disease is complex, involving a combination of genetic and environmental factors. Genetic testing may provide information about specific mutations, but it cannot account for all the variables that contribute to the development of the disease. Furthermore, the majority of Parkinson’s cases do not result from known genetic mutations.

7. If I need to get genetic testing for Parkinson's disease, what type of test should be done, and what are the advantages/disadvantages of different types of genetic testing for Parkinson's disease?

There are different types of genetic tests for Parkinson’s disease, each with its advantages and disadvantages. The decision to undergo testing should be made in consultation with a healthcare professional, considering individual circumstances and preferences. Here are some common types:

  1. Single Gene Testing:

– Advantages: This test focuses on specific genes associated with Parkinson’s, such as SNCA, LRRK2, and PARK2. It provides targeted information.

– Disadvantages: It may not identify other less common or newly discovered genetic factors contributing to Parkinson’s. Results may not provide a comprehensive view.

  1. Panel Testing:

– Advantages: This broader test examines multiple genes simultaneously, increasing the likelihood of detecting relevant mutations.

– Disadvantages: It may still miss some rare or emerging genetic factors. Interpretation can be complex, requiring specialized knowledge.

  1. Whole Exome Sequencing (WES):

– Advantages: WES analyzes the coding regions of all genes, potentially identifying rare or novel mutations.

– Disadvantages: It may uncover variations of unknown significance, leading to uncertainty in interpretation. It is more expensive and may produce more data than needed for Parkinson’s assessment.

  1. Whole Genome Sequencing (WGS):

– Advantages: WGS analyzes the entire genome, providing a comprehensive overview of genetic variations.

– Disadvantages: Similar to WES, it may reveal variations with unclear significance. It is the most expensive option.

8. What is Polygenic Risk Score (PRS)? Does it help in diagnosing Parkinson’s Disease?

A Polygenic Risk Score (PRS) is a numerical representation of an individual’s genetic susceptibility to a particular condition, such as Parkinson’s disease, based on multiple genetic variants across the genome. In the context of Parkinson’s disease, a polygenic risk score combines information from various genetic markers to estimate an individual’s overall risk of developing the condition.

Here’s how a Polygenic Risk Score works and its role in diagnosing Parkinson’s disease:

  1. Multiple Genetic Variants: Parkinson’s disease is believed to have a complex genetic basis involving the interaction of multiple genetic factors. Researchers have identified various genetic markers (or variants) associated with an increased or decreased risk of Parkinson’s.
  2. Weighted Contributions: Each genetic variant is assigned a weight based on its observed association with Parkinson’s disease in large-scale genetic studies. Some variants may contribute more significantly to the risk, while others have a lesser impact.
  3. Cumulative Risk Assessment: The Polygenic Risk Score is calculated by summing up the weighted contributions of these genetic variants. The resulting score provides an estimate of an individual’s overall genetic susceptibility to Parkinson’s disease.
  4. Population Comparisons: The Polygenic Risk Score is often compared to scores from large population studies to determine where an individual falls in terms of their genetic risk compared to the general population.
  5. Risk Stratification: Individuals with higher Polygenic Risk Scores may be considered at a relatively higher risk of developing Parkinson’s disease, while those with lower scores may have a lower risk. However, it’s important to note that a Polygenic Risk Score is not a diagnostic tool but rather a probabilistic assessment.
  6. Clinical Application: While Polygenic Risk Scores show promise in understanding genetic risk, they are not currently used as standalone diagnostic tools for Parkinson’s disease. Instead, they may contribute to a comprehensive risk assessment when combined with clinical evaluation, family history, and other relevant factors.

In summary, a Polygenic Risk Score for Parkinson’s disease provides a personalized genetic risk estimate based on multiple genetic variants. While it adds valuable information to our understanding of genetic contributions to Parkinson’s risk, it is not a definitive diagnostic tool and should be interpreted in conjunction with other clinical and genetic information by healthcare professionals.

9. Are there specific factors that increase the chances of getting Parkinson's disease?

Yes, age is a significant factor. The likelihood of developing Parkinson’s disease increases with age. However, it’s important to note that not everyone who gets older will develop the condition.

10. Is Parkinson's disease contagious or can you catch it from someone else?

No, Parkinson’s disease is not contagious. It is not caused by a virus or bacteria and cannot be passed from person to person like a cold or the flu.

To Conclude

In moments of contemplation about the possibility of developing Parkinson’s disease, questions inevitably arise about the role of genetic testing in diagnosis. While our answers provide valuable insights, it’s crucial to understand that, at this juncture in medical science, clinical diagnosis of Parkinson’s disease relies more on a thorough assessment by a healthcare professional. Tests may serve to substantiate the diagnosis, but they are not the sole determinant. Early signs, such as tremors, stiffness, and balance issues, may raise concerns, yet these symptoms can stem from various conditions. If you observe persistent symptoms, seeking guidance from a healthcare professional becomes paramount for an accurate diagnosis.

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news

Unveiling the Groundbreaking Solution for Parkinson’s Freezing of Gait

Parkinson’s disease affects over 9 million people worldwide and causes “freezing of gait,” which is one of the most debilitating symptoms. Recent research from the Harvard John A. Paulson School of Engineering and Applied Sciences and the Boston University Sargent College of Health & Rehabilitation Sciences has developed a soft, wearable robot that gently assists the wearer’s hip movement, enabling longer strides and eliminating freezing episodes indoors. The wearable garment uses cable-driven actuators and sensors, generating assistive moments in concert with biological muscles. The device’s impact was immediate, and the participant was able to walk without freezing indoors, and even outdoors, he experienced only occasional episodes. The device has the potential to deepen our understanding of gait freezing, a phenomenon that remains poorly understood. This soft robotic device offers a ray of hope for Parkinson’s patients worldwide, paving the way for further research into soft robotics and their potential to improve the lives of individuals grappling with this debilitating disease.

The study titled “Soft robotic apparel to avert freezing of gait in Parkinson’s disease” has been published in Nature Medicine (January 2024). The key findings of the study include:

  1. The soft robotic garment gently assists the wearer’s hip movement, enabling longer strides and eliminating freezing episodes indoors.
  2. The device’s impact was immediate, and the participant was able to walk without freezing indoors, and even outdoors, he experienced only occasional episodes.
  3. The study involved a 73-year-old man with Parkinson’s disease, who, despite undergoing surgical and pharmacologic treatments, experienced frequent and debilitating freezing episodes, leading to frequent falls and reduced mobility.
  4. The device’s sensors collected motion data and generated assistive forces in sync with muscle movement, effectively reducing freezing episodes.
  5. The study’s results offer a ray of hope for Parkinson’s patients worldwide, paving the way for further research into soft robotics and their potential to improve the lives of individuals grappling with this debilitating disease.

These findings support the potential of soft robotic devices in addressing the challenges faced by Parkinson’s patients, particularly in mitigating the effects of freezing of gait.

What is Freezing of Gait?

Freezing of gait is a common, disabling symptom of Parkinson’s disease (PD), but the mechanisms and treatments of FOG remain great challenges for clinicians and researchers. Freezing of gait (FOG) is defined as a brief, episodic absence or marked reduction of forward progression of the feet despite the intention to walk. During a freezing episode, a person with PD may feel like their feet are stuck in place, or glue to the ground. Freezing may also affect other parts of the body or speech. Some people are more likely to have freezing episodes than others. Freezing may occur when the person with PD is due for the next dose of dopaminergic medications. This is called “off” freezing — usually, until compensation strategies such as cueing is provided.

FOG is one of the most disabling yet poorly understood symptoms of Parkinson’s disease (PD). FoG is an episodic gait pattern characterized by the inability to step that occurs on initiation or particularly with perception of tight surroundings. This phenomenon impairs balance, increases falls, and reduces the quality of life. The exact cause of FOG is not known, but it is thought to be related to the degeneration of the basal ganglia, which is responsible for controlling movement.

FOG is not unique to PD and can also occur in other neurological conditions, such as, Higher Gait Disorders (HGD), multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration.

There are several treatment options for FOG, including pharmacological, surgical, and behavioral therapies. Pharmacological treatments include levodopa, dopamine agonists, and monoamine oxidase inhibitors. Surgical treatments include deep brain stimulation (DBS) and lesioning of the subthalamic nucleus (STN) or globus pallidus internus (GPi) with variable / suboptimal benefits for exclusive FOG. Behavioral therapies include cueing, which involves providing visual or auditory cues to help the patient initiate movement, and physical therapy, which can help improve balance and gait.

In recent years, researchers have developed a soft, wearable robot designed to combat freezing of gait in Parkinson’s patients. Worn around the hips and thighs, this innovative robotic garment gently assists the wearer’s hip movement, enabling longer strides and eliminating freezing episodes indoors. The device’s sensors collected motion data and generated assistive forces in sync with muscle movement, effectively reducing freezing episodes. The device’s impact was immediate, and the participant was able to walk without freezing indoors, and even outdoors, he experienced only occasional episodes.

In conclusion, FOG is a common and debilitating symptom of Parkinson’s disease that can also occur in other neurological conditions. The exact cause of FOG is not known, but it is thought to be related to the degeneration of the basal ganglia. There are several treatment options for FOG, including pharmacological, surgical, and behavioral therapies. Recent research has also shown promising results with a soft, wearable robot designed to combat freezing of gait in Parkinson’s patients.

Reference:

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8233405/
  2. https://translationalneurodegeneration.biomedcentral.com/articles/10.1186/s40035-020-00191-5
  3. https://www.nature.com/articles/s41591-023-02731-8
  4. https://www.thebrighterside.news/post/revolutionary-soft-robotic-exosuit-offers-hope-for-9-million-parkinson-s-patients-worldwide
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Awareness

Michael J Fox’s Fight Against Parkinson’s: Supporting Research and Awareness

The documentary “Still: A Michael J. Fox Movie” provides an affecting portrait of the beloved actor and advocate, exploring his personal and professional triumphs and travails, particularly his journey with Parkinson’s disease. The film delves into Fox’s life, from his early career and success in iconic 80s hits like “Back to the Future” and “Family Ties,” to his public revelation of his Parkinson’s diagnosis in 1998, a condition he had kept secret for seven years. The documentary includes dramatic reconstructions, interviews with Fox, and glimpses into his daily life with his family and personal trainer. It portrays Fox as a thoroughly likable man, without self-pity, and highlights his natural upbeat style as a survival mechanism. The film has been praised for its well-balanced and thought-provoking approach, offering a new storytelling format that effectively communicates the heart of Fox’s story, filling the audience with both sadness and hope. The documentary is available for streaming on Apple TV+ and has been nominated for seven Emmy Awards, including Outstanding Documentary

By watching “Still: A Michael J. Fox Movie,” you’ll gain a deeper understanding of the challenges faced by those living with Parkinson’s disease and learn about the ongoing efforts to find a cure. The documentary serves as a powerful reminder of the importance of awareness, research, and support in the fight against this debilitating condition.

“Still: A Michael J. Fox Movie” has received several accolades and awards, including the following:

  1. Critics’ Choice Documentary Awards: The film won five prizes at the Critics’ Choice Documentary Awards, including Best Feature and Best Director.
  2. Other Awards: The documentary also won Outstanding Sound Design and has been recognized for achievement in documentaries.

The film’s success at the Critics’ Choice Documentary Awards and its recognition for various aspects of its production highlight its exceptional quality and impact.

What is Michael J Fox Foundation

The Michael J. Fox Foundation for Parkinson’s Research, founded in 2000 by Michael J. Fox, is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and ensuring the development of improved therapies for people living with the condition. The foundation has become the largest non-profit funder of Parkinson’s disease research in the world, with more than $1 billion of research projects to date.

Works of the Michael J. Fox Foundation:

  1. Research Funding: The foundation focuses on funding research to find a cure for Parkinson’s disease and develop improved therapies for those affected by the condition.
  2. Clinical Studies: In 2010, the foundation launched the first large-scale clinical study on evolution biomarkers of the disease, which has led to ground breaking research and a better understanding of the condition.
  3. Living with Parkinson’s: The foundation’s online source for information on Parkinson’s disease includes guides for the newly diagnosed and caregivers, stories from people living with the disease, and additional resources.
  4. Awareness and Advocacy: The foundation has raised awareness for Parkinson’s disease through various initiatives, such as the Nike raffle in 2016, which raised $6.75 million for the cause.
  5. Collaboration: The Michael J. Fox Foundation collaborates with other organizations and researchers to advance the understanding and treatment of Parkinson’s disease.

The foundation’s efforts have led to significant progress in Parkinson’s research, including the discovery of a biomarker for the disease, which has increased hope for a cure in the future[2]. Michael J. Fox’s personal journey with Parkinson’s disease and his advocacy work through the foundation have raised awareness and funds for research, making a significant impact on the lives of those affected by the condition.

Apple TV + Documentary source

Click Here to Watch the Full Documentary

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Apomorphine Therapy

Myths and Truth About Nanavathi Hospital Parkinson Injection Video

A Video about Parkinson’s disease patient being treated with apomorphine injections at Nanavathi Hospital , Mumbai became an social media craze in early 2019  (well known as Nanavati hospital Parkinson injection ).  The video shows an dramatic improvement, which has made everyone to think that this is a cure for Parkinson’s disease.   Thousands of Parkinson’s disease patients / caregivers thronged hospitals to find out about this therapy.   Even medical fraternity were perplexed about this, and what was being conveyed.    As a medical fraternity, we do know that till now there is NO CURE for parkinson’s disease currently.   There are good treatments available for Parkinson’s disease including medications, injections and surgeries.   Apomorphine is usually used as treatment option in moderately advanced Parkinson’s disease.  The video shows basically an improvement seen after the injections, which could be similar to levodopa tablets or DBS.  What it missed out on telling was this response would last only for about 60-90 minutes and this is only an symptomatic therapy.

As this video is popping up seasonally, this section would give an idea about Apomorphine and remove the myths around it.

Nanavati Hospital Parkinson Injection Video showing dramatic improvement

Dr Prashanth LK responding to Nanavathi Parkinson Injection Video

Facts about Apomorphine Injection Therapy for Parkinson Disease

FAQ about apomorphine injections

What is Apomorphine?

Apomorphine is a medication which is classified under “Dopamine Agonists”.  This means it works towards increasing dopamine levels in the brain. Other medications under this category include Pramipexole, Ropinirole,etc.

Is Apomorphine similar to Morphine and causes addiction?

Apomorphine is derived from Morphine (Apo means “from”). It is produced by combining Morphine with acids like Hydrochloric acid at high temperatures. By this process, Morphine loses all its properties and a complete new chemical is formed. The chemical name of apomorphine is (C17H17NO2) and is significantly similar to Dopamine.

When was Apomorphine discovered? What are the conditions where Apomorphine is used?

Apomorphine was discovered in 1845. Since then it has been used in various medical conditions like :

i. Vomit inducing agent in poisoning patients,

ii. Sleep inducing agent,

iii. Anesthesia,

iv. De-addiction purposes

v. Respiratory distress disorders

vi. Sexual dysfunction

vii. Movement Disorders (Parkinson’sDisease)

How does apomorphine help in Parkinson’s disease?

In Parkinson’s disease patients, there is reduction of the brain chemical – Dopamine. Apomorphine increases the levels of dopamine and hence improvement in Parkinson’s symptoms.

Since when Apomorphine is used in management of Parkinson’s Disease?

The first use of Apomorphine for Parkinson’s disease is around 1935. Since then it has been used in various studies. Its utilization was not prominent in early years due to nausea/ vomiting issues. With introduction of domperidone to reduce the side effects of Apomorphine, in 1970’s apomorphine utilization has dramatically increased and since last 20 years it is one of the options for advanced therapies for Parkinson’s Disease along with Deep Brain Stimulation (DBS) surgery and Levodopa-Carbidopa Intestinal gel (LCIG).

What are the different formulations, in which Apomorphine is available currently?

Apomorphine is primarily marketed in the form of Injections. However, tablet formulations are also available. There are research studies going on for newer delivery methods with better patient adaptation

What is the advantage of Apomorphine injections as compared to oral levodopa tablets used for Parkinson’s Disease?

We all know that as Parkinson’s disease progress, the duration of benefits of oral levodopa tablets start reducing and people will also start to have erratic responses. Sometimes the oral medications does not work or take too long to work as they are not absorbed properly in our gut (Stomach, duodenum). This is due the changes happening in our gut due to progression of Parkinson’s disease. Apomorphine, which is taken in injection formulation, bypassess the stomach absorption and hence its limitations. This bypassing helps to overcome the limitation of medications and gives quick and predictable benefits.

What are Apomorphine Rescue Injections? How long does it take to work and last for?

Apomorphine rescue injections are “emergency injections” which can be carried by patients in their pockets like “Insulin Injection pens”. If at any time, any Parkinson’s disease patient develops severe slowness, he can take subcutaneous injections similar to insulin injections. This apomorphine injection usually starts working within 5-10 minutes and gives quick and predictable relief. This whole beneficial effect lasts for about 60-90 minutes, helping people to tide over acute worsening. Hence called Rescue injections.

What is Apomorphine Pump Therapy?

In advanced Parkinson’s disease, people who are in need of taking medications very frequently and limited by benefits of oral therapy (like ON-OFF phenomenon, dyskinesia) are suggested for advanced Parkinson’s disease therapies. Apomorphine pump therapy is an advanced Parkinson’s disease therapy. It involves slow release of apomorphine throughout the day and hence providing stable, predictable benefits. It is somewhat similar to Insulin Pump therapy used by diabetes patients.

Are Apomorphine Pump therapy available in India?

Yes, currently two different generations of Apomorphine pumps are available in India. These products are in use in India since 2019.  These are supplied by – Rusan Pharamceuticals and Ever Pharma (Celera India)

Can anyone with Parkinson’s Disease take Apomorphine?

Apomorphine is used in specific stages of Parkinson’s disease to get desired benefits and improve quality of life. Your treating doctor would be able to tell whether you would benefit from Apomorphine therapy.

In the initial phase Apomorphine is used to assess whether the givenParkinson’s disease / Parkinsonism patient would be having benefits with levodopa therapy. This is called the “Apomorphine ResponseTest (ART)”.

In mid-phase of Parkinson’s disease, Apomorphine is used as emergency medications to give quick benefits when certain dosages of levodopa are not working due to various causes. This is called as “Rescue Therapy”

In moderately advanced Parkinson’s Disease, Apomorphine is used in continuous injections in the form of “ApomorphinePumpTherapy ” to over come motor fluctuations (ON – OFF phenomenon) and Dyskinesias.

What is an Apomorphine Response Test(ART)?

Apomorphine Response test or ART is a test to see whether your clinical symptoms improve with Apomorphine. This is done as an elective procedure, where in certain blood tests are done prior to testing. You would also be given “domperidone” tablets to reduce the side effects of Apomorphine. During ART, you would be asked to come in the morning without taking any levodopa and you would be assessed by giving different dosages of Apomorphine injections (usually ranging from 1mg to 6mg). The whole process may last from 90mins to 4-5 hours depending on response and side effects. Your treating doctor/team, will explain about this in detail. If there is a good response to ART, then you can be recommended for rescue therapy OR pump therapy as required.

What is Apomorphine Pump Therapy?

Apomorphine Pump therapy involves slow and continuous release of Apomorphine using a small pump, which can be carried in the pocket or sling bag or belt attachment. The continuous slow release of Apomorphine gives a predictable response throughout the day.

This takes away the side effects of excess medications and has the ease of quick adjustments. Usually pump therapy is given for about 10-16 hrs in a waking day period. However, in some cases night time use is also recommended.

What are the advantages of Apomorphine pump therapy in Parkinson’s Disease?

The advantages of Apomorphine pump therapy include:

i. It gives predictable responses

ii. Dosages can be easily modified as required

iii. No upfront cost like in DBS or LCIG gel therapies

iv. It is also used in patients in whom DBS is contraindicated and has shown good consistent benefits.

v. It has beneficial effects on cognitive function and can be used in people who are having mild to moderate cognitive impairment (where DBS is contraindicated)

vi. It is used in patients with resistant axial symptoms (Camptocormia – bending spine posture) with good benefits.

vii. It is also used in patients in whom DBS effects are reducing over the period of time to give add on benefits.

viii. It can be used for resistant Restless legs syndrome

What are the disadvantages of Apomorphine Pump Therapy?

The disadvantages of Apomorphine are similar to that of Levodopa, Pramipexole, Ropinirole etc. Specific disadvantage of Apomorphine pump therapy include:

i. It has to be managed on a daily basis to start and stop. Some patients may require assistance for the same.

ii. Some people are scared of needle pricks, which is a hurdle for utilization.

iii. Some people feel it is clumsy to carry.

iv. Skin injection sites small nodules are formed. Albeit they are temporary and non-concerning, rarely they can get infected causing problems.

v. Some people continue to have disturbing side effects of nausea, vomiting, drowsiness, blood pressure fluctuations in spite of domperidone.

Most of the dropouts in Apomorphine pump therapy have been noted in the first few months due to adaptation required. However once accepted, people have been using it over many years, with consistent benefits.

Are there any studies Indian / International on benefits of Apomorphine therapies?

Apomorphine therapy has been well accepted therapy for Parkinson’s disease for the last 30+ years. This is categorized under advanced therapies for Parkinson’s disease along with DBS and LCIG. There have been many publications on benefits and long term outcomes of Apomorphine therapy from various countries including India. There are guidelines published by International Movement Disorders groups on who should use apomorphine therapies.

Is Apomorphine injections / therapy available everywhere across India?

Theoretically Apomorphine should be available everywhere across India easily. However as this is an advanced therapy and used in a certain set of Parkinson’s Disease, the ease of access is limited to these advanced movement disorders centers in India. Usually you would be guided on how to procure after therapy initiation. Most of the time they are delivered to each patient on a requirement basis, without any major logistical issues. Even during COVID times, the logistics were maintained and even dispatched to patients who were struck abroad due to lockdown.

Where should I contact for Apomorphine pump therapy?

Your treating doctor will be able to guide you to the nearest Parkinson’s Disease center, who specialize in apomorphine therapies. Please speak to your treating Neurologist / Movement Disorders Specialist for further details.

Resources and Further reading

1. Prashanth LK, Jaychandran R, Seetharam R, Iyer RB. Apomorphine: The Initial Indian Experience in Relation to Response Tests and Pumps. Ann Indian Acad Neurol. 2020 Jan-Feb;23(1):20-24. doi: 10.4103/aian.AIAN_428_19. Epub 2019 Dec 19. PMID: 32055117; PMCID: PMC7001430.

2. Kukkle PL, Garg D, Merello M. Continuous Subcutaneous Infusion Delivery of Apomorphine in Parkinson’s Disease: A Systematic Review. Mov Disord Clin Pract. 2023 Jun 26;10(9):1253-1267. doi: 10.1002/mdc3.13810. PMID: 37772305; PMCID: PMC10525070.

3. Metta V, Borgohain R, L Kukkle P, Mridula R, Agarwal P, Kishore A, Goyal V, Chaudhuri R. Subcutaneous apomorphine in advanced Parkinson’s disease and its use in Indian population. Ann Mov Disord 2020;3:145-55

4. Trenkwalder C, Chaudhuri KR, García Ruiz PJ, LeWitt P, Katzenschlager R, Sixel-Döring F, Henriksen T, Sesar Á, Poewe W; Expert Consensus Group for Use of Apomorphine in Parkinson’s Disease, Baker M, Ceballos-Baumann A, Deuschl G, Drapier S, Ebersbach G, Evans A, Fernandez H, Isaacson S, van Laar T, Lees A, Lewis S, Martínez Castrillo JC, Martinez-Martin P, Odin P, O’Sullivan J, Tagaris G, Wenzel K. Expert Consensus Group report on the use of apomorphine in the treatment of Parkinson’s disease–Clinical practice recommendations. Parkinsonism Relat Disord. 2015 Sep;21(9):1023-30. doi: 10.1016/j.parkreldis.2015.06.012. Epub 2015 Jun 17. PMID: 26189414.

5. Jenner P, Katzenschlager R. Apomorphine – pharmacological properties and clinical trials in Parkinson’s disease. Parkinsonism Relat Disord. 2016 Dec;33 Suppl 1:S13-S21. doi: 10.1016/j.parkreldis.2016.12.003. Epub 2016 Dec 13. PMID: 27979722.

6. Todorova A, Ray Chaudhuri K. Subcutaneous apomorphine and non-motor symptoms in Parkinson’s disease. Parkinsonism Relat Disord. 2013 Dec;19(12):1073-8. doi: 10.1016/j.parkreldis.2013.08.012. Epub 2013 Aug 29. PMID: 24051336.

7. Dafsari HS, Martinez-Martin P, Rizos A, Trost M, Dos Santos Ghilardi MG, Reddy P, Sauerbier A, Petry-Schmelzer JN, Kramberger M, Borgemeester RWK, Barbe MT, Ashkan K, Silverdale M, Evans J, Odin P, Fonoff ET, Fink GR, Henriksen T, Ebersbach G, Pirtošek Z, Visser- Vandewalle V, Antonini A, Timmermann L, Ray Chaudhuri K; EUROPAR and the International Parkinson and Movement Disorders Society Non- Motor Parkinson’s Disease Study Group. EuroInf 2: Subthalamic stimulation, apomorphine, and levodopa infusion in Parkinson’s disease. Mov Disord. 2019 Mar;34(3):353-365. doi: 10.1002/mds.27626. Epub 2019 Feb 4. PMID: 30719763.

8. Fernández-Pajarín G, Sesar Á, Ares B, Castro A. Evaluating the Efficacy of Nocturnal Continuous Subcutaneous Apomorphine Infusion in Sleep Disorders in Advanced Parkinson’s Disease: The APO-NIGHT Study. J Parkinsons Dis. 2016 Oct 19;6(4):787-792. doi: 10.3233/JPD-160886. PMID: 27662329.

9. Sesar Á, Fernández-Pajarín G, Ares B, Rivas MT, Castro A. Continuous subcutaneous apomorphine infusion in advanced Parkinson’s disease: 10-year experience with 230 patients. J Neurol. 2017 May;264(5):946-954. doi: 10.1007/s00415-017-8477-0. Epub 2017 Mar 31. PMID: 28364292.

10. Borgemeester RWK, van Laar T. Continuous subcutaneous apomorphine infusion in Parkinson’s disease patients with cognitive dysfunction: A retrospective long-term follow-up study. Parkinsonism Relat Disord. 2017 Dec;45:33-38. doi: 10.1016/j.parkreldis.2017.09.025. Epub 2017 Sep 29. PMID: 29032012.

11. Sesar Á, Fernández-Pajarín G, Ares B, Relova JL, Arán E, Rivas MT, Gelabert-González M, Castro A. Continuous subcutaneous apomorphine in advanced Parkinson’s disease patients treated with deep brain stimulation. J Neurol. 2019 Mar;266(3):659-666. doi: 10.1007/s00415-019-09184-5. Epub 2019 Jan 7. PMID: 30617907.

12. Menšíková K, Kaiserová M, Vaštík M, Nevrlý M, Kurčová S, Kaňovský P, Colosimo C. The long-term effect of continuous subcutaneous apomorphine infusions on camptocormia in Parkinson’s disease. Parkinsonism Relat Disord. 2020 Jun;75:14-16. doi: 10.1016/j.parkreldis.2020.05.015. Epub 2020 May 12. PMID: 32442812

Overall this Nanavati Hospital Parkinson injection video has been impressive in creating awareness about treatment options for people with Parkinson’s disease.   Many people have equated Nanavati Hospital Parkinson injection video to be synonymous with cure for Parkinson’s disease, which is a misinterpretation of the video circulated, leading to lot of myths associated around this therapy.  We hope our blog on Nanavati hospital Parkinson injection video gives an open insight into the indications, uses and limitations of this therapy and breaks down into some of the myths which are being interpreted from this video.

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Publications

Unlocking India’s Genetic Code: Revelations and Challenges in Parkinson’s Disease Research

Charting Unexplored Terrain: The Genetic Landscape of Parkinson’s Disease in India. In a groundbreaking publication titled ‘The Genetic Drivers of Juvenile, Young, and Early-Onset Parkinson’s Disease in India,’ a pioneering Indian research group fills a crucial void in our understanding, shedding light on the elusive genetic factors driving Parkinson’s disease within the Indian population.   The article is published in leading Movement Disorders Journal which is well read across globally.

This is a first of a kind study conducted in India aimed to initiate a population-based genetic screening of Young Onset Parkinson’s disease (YOPD) in Indian population. The Genetics of PAN-India Young Onset Parkinson Disease (GOPI-YOPD), a multicentre Pan India project- recruited 1000 patients through a network of 10 specialty Movement Disorder Centers/Neurology clinics across India. The genomic analysis was done at MedGenome Labs.

``Parkinson's disease is a common neurological disorder causing tremors, slowness of movements, stiffness and walking difficulties in most. It is caused by a complex interaction between external environmental and familial or genetic factors. This study gives a much needed insights into the Indian genetics to the bigger puzzle of Parkinson's Disease``
Prof. Rupam Borgohain
Secretary, Parkinson's Research Alliance of India (PRAI)
“MedGenome has always been at the forefront of equipping clinicians and patients with the latest and most innovative tools in healthcare by leveraging the power of genomics. With the increased focus on personalised medicine, using risk screening tools such as Polygenic Risk Score (PRS) will enable us to predict an individual's genetic liability to rare and inherited diseases much in advance before the symptoms start appearing. With these findings, we aim to offer a prognostic value to clinicians while catering to the need of a systematic genetic evaluations for timely prevention and management of several diseases.
Dr Ramprasad VL
CEO & Chief Scientist, Medgenome Labs Private Limited
Prashanth LK
``a first of its kind- India wide registry of Young Onset Parkinsons Disease (disease starting at age less than 50 years) was started by PRAI and resulted in insights into clinical and genetic aspects of Indian patients. Parkinson’s disease with onset less than 20 years (juvenile PD), 20-40 years (young onset PD) and 40-50 years (early onset PD) have different clinical features. The role of genetic factors seems to be higher in these patients compared to older age and this collaborative project of PRAI with MedGenome has identified unique genetic fingerprints in Indian patients.”
Dr Prashanth LK
Principal Investigator, Genetics of Parkinon in India : Young Onset Parkinsons Disease (GOPI-YOPD)

Critical Findings in the article:

The study focused on individuals with young-onset Parkinson’s disease (YOPD) and early-onset Parkinson’s disease (EOPD) in India. YOPD was defined as age of onset (AoO) ≤40, while EOPD was defined as 40 < AoO ≤ 50. The study aimed to understand the genetic drivers of PD in these specific age groups.  The main findings of the study regarding the genetic drivers of Parkinson’s disease in India are as follows:

  1. Rare variants in more than 20 genes were identified as causal for Parkinson’s disease.
  2. The study identified 90 independent risk loci associated with Parkinson’s disease through a genome-wide association study (GWAS).
  3. The study focused on a South Asian population, filling the gap in understanding Parkinson’s disease genetics outside of European populations.
  4. The study had a sample size of approximately 2000 patients and controls, limiting the statistical power of the analyses.
  5. Some of the findings were validated by previous studies in other cohorts or populations, such as the association of the SNCA region with Parkinson’s disease diagnosis.
  6. The study highlighted the need for replication of the findings in additional South Asian Parkinson’s disease cohorts and in cohorts from other populations.

Parkinson Disease Genes Found in this Study:

In the study conducted in India, several pathogenic forms of genes were associated with Parkinson’s disease. The most common pathogenic variant was observed in the PRKN gene, with homozygous deletions being the predominant form. Other pathogenic mutations were found in genes such as PINK1, CHCHD2, VPS13C, ATP13A2, PLA2G6, and PRRT2. Additionally, likely pathogenic mutations were observed in genes like PLA2G6, MAPT, GCH1, PINK1, SYNJ1, and WDR45. The GBA1 gene mutations were also frequently observed in the cohort. These findings provide insights into the genetic factors contributing to Parkinson’s disease in the Indian population.

New Discoveries :

Several new genes were discovered in this study on the genetic drivers of Parkinson’s disease in India. The study identified rare variants in more than 20 genes that are considered causal for Parkinson’s disease. However, the specific genes that were discovered in this study are not mentioned in the provided context

Take Home Message and Future Directions based on this study:

The study on the genetic drivers of Parkinson’s disease in India identified several key findings and proposed future directions. Here are the conclusions and future directions based on the study:

  1. Genetic Risk Factors: The study identified both common and rare genetic variants associated with Parkinson’s disease in the South Asian population. It expanded our understanding of the genetic architecture of Parkinson’s disease beyond European populations.
  2. Polygenic Risk: The study found that individuals with pathogenic variants in known Parkinson’s disease genes had a reduced polygenic burden, suggesting that these variants may have a stronger effect on disease risk.
  3. Novel Risk Loci: The study identified a potential association between the BSN gene and Parkinson’s disease in the South Asian population. Further research is needed to validate this finding and understand the functional impact of BSN variants.
  4. Replication and Validation: The study acknowledges the need for replication and validation of the findings in additional South Asian Parkinson’s disease cohorts and in other populations. Larger sample sizes and diverse cohorts will improve the statistical power and generalizability of the results.
  5. Global Parkinson’s Genetics Program (GP2): The study highlights the importance of initiatives like the GP2, which aims to address the knowledge gap in Parkinson’s disease genetics by including diverse populations and promoting equitable personalized medicine.
  6. Future Research: The study suggests that with ongoing efforts in the GP2 and other Parkinson’s disease genetics studies in India, our understanding of Parkinson’s disease genetics in South Asians will significantly increase in the coming years.

In summary, the study provides valuable insights into the genetic drivers of Parkinson’s disease in the South Asian population and emphasizes the need for further research, replication, and validation to enhance our understanding of the disease and improve personalized medicine approaches.

Resource Reference

Andrews, S.V., Prashanth L Kukkle, Menon, R., Geetha, T.S., Goyal, V., Kandadai, R.M., Kumar, H., Borgohain, R., Mukherjee, A., Wadia, P.M., Yadav, R., Desai, S., Kumar, N., Joshi, D., Murugan, S., Biswas, A., Pal, P.K., Oliver, M., Nair, S., Kayalvizhi, A., Samson, P.L., Deshmukh, M., Bassi, A., Sandeep, C., Mandloi, N., Davis, O.B., Roberts, M.A., Leto, D.E., Henry, A.G., Di Paolo, G., Muthane, U., Das, S.K., Peterson, A.S., Sandmann, T., Gupta, R., Ramprasad, V.L. and (2023), The Genetic Drivers of Juvenile, Young, and Early-Onset Parkinson’s Disease in India. Mov Disord. https://doi.org/10.1002/mds.29676

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Awareness

Navigating Choices: Factors Influencing Deep Brain Stimulation (DBS) Surgery Decisions in Developing Countries – India

What factors contribute to the significant difference in the rate of Deep Brain Stimulation (DBS) surgery for Parkinson’s Disease (PD) between developed and developing countries?  What influences the decision of patients with PD in the developing world to opt for or against Deep Brain Stimulation (DBS) surgery? What are the primary barriers hindering a larger proportion of eligible PD patients in the developing world from undergoing Deep Brain Stimulation (DBS) surgery?  These questions have been addressed in a recently published medical paper from India in the medical journal – Movement Disorders in Clinical Practice.   Let’s see what we as a general population can understand from this article.

Deep Brain Stimulation (DBS) Surgery for Parkinson’s Disease – The Developing World’s (India) Perspective:

  • Study focused on patients with Parkinson’s disease (PD) and motor complications in developing countries (India) spanned over 5 year period (2016-2020) involving 1017 Parkinson’s Disease patients.
  • Among 1017 Parkinson’s Disease people, 223 patients met the medical criteria for consideration of Deep Brain Stimulation (DBS) surgery.
  • Among 223 medically indicated for DBS surgery, Only 35% (78 patients) patients opted for DBS surgery.
  • Among these 78 Patients who opted for surgery, 37 patients were found to be unfit for DBS surgery during the Pre-operative workup and only 41 patients finally underwent DBS Surgery.
  • So in brief, in 1017 patients with Parkinson’s Disease, roughly 22% met the clinical criteria for DBS surgery.  From the whole cohort, 7% opted for DBS surgery and among them, only about 4% were deemed fit and underwent the procedure.

Let’s see what factor played a role in decision making for Deep Brain stimulation Surgery in these patients in India.

Characteristics of Patients Opting for DBS Surgery:

Demographics:

  • Older age: Patients choosing DBS were generally older.
  • Higher socioeconomic status: Those opting for surgery had a higher socioeconomic status.

Disease Duration and Motor Complications:

  • Longer duration of PD: Patients choosing DBS had PD for a longer period.
  • Longer duration of motor fluctuations: Opted-for surgery patients experienced motor fluctuations for an extended time.

Motor Symptoms:

  • More severe motor disability in the OFF state: Severity of motor disability was higher in surgery-opting patients when not on medication.
  • More severe freezing of gait in the OFF state: Patients choosing DBS experienced more severe freezing of gait without medication.

Psychiatric and Cognitive Symptoms:

  • History of hallucinations and psychotic symptoms: Opted-for surgery patients had a higher incidence of these symptoms.
  • Higher burden of cognitive symptoms: Prevalence of cognitive dysfunction was higher in surgery-opting patients.

Correlation Between Socioeconomic Status and Surgical Decisions:

  • Correlation found between higher socioeconomic status and the willingness to undergo DBS surgery.
  • Almost 40% of patients opting for medical management cited financial constraints.

Barriers to DBS Surgery:

Reasons for Not Undergoing Surgery:

  • Financial constraints: 39.3% cited financial limitations.
  • Concerns about risks and complications: 13.1% were hesitant due to surgical concerns.
  • Lack of conviction about benefits: 9% were not convinced about expected benefits.
  • Inadequate family support: 6.9% lacked sufficient family support.

Consideration for Future DBS Surgery:

  • 31.7% of patients opting for medical management kept DBS as an option for future consideration.

Comparison with Western Populations:

  • Difference in DBS surgery rates between Western and developing countries.
  • In India, limited access, insurance coverage, and socioeconomic factors contribute to the low rate (35%).
  • Western countries, with comprehensive health coverage, may have higher rates, but concerns about efficacy and safety still influence decisions.

Conclusion:

  • Understanding the complex interplay of socioeconomic, medical, and personal factors crucial for making informed decisions about Deep Brain Stimulation (DBS) surgery in developing countries.
  • Financial constraints, limited insurance, and familial support emerged as significant barriers.
  • Future research and policy considerations should address these barriers to ensure equitable access to DBS surgery in developing regions.
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