“Music-Based Treatment of Neurodegenerative Diseases” with Dr. Alexander Pantelyat M.D., FAAN: https://youtu.be/sugzoaP5nVM
Dr. Pantelyat is a Ukrainian born, movement disorders neurologist at the Johns Hopkins University School of Medicine, where he directs the Johns Hopkins Atypical Parkinsonism Center and the Johns Hopkins Center for Music and Medicine. Dr. Pantelyat's work is focused on the discovery and validation of diagnostic and prognostic biomarkers for Parkinson’s disorders and on music-based treatment of neurodegenerative diseases. He is a 3rd generation neurologist, who got to help his mom at her lab, when they moved to the USA, in Philadelphia.
“Autism Acceptance Month & Cultivating Traditions After Loss” with Amelia Green:
https://m.youtube.com/channel/UCIXinLVvBF744XyijGHY3sQ
Amelia pursued several degrees in Autism, her highest, a Masters of Autism in ABA(Applied Behavioral Analysis), when her young son Alex was diagnosed with Autism. Alex’s complex diagnoses and needs impacted Amelia’s life, her two other children, their community and everyone they encountered/encounter. Alex died in 2021 at the tender age of nearly 14, after bravely fighting seizures for several years. Lori wakes up daily with the goal to have and promote as much joy and love as Alex did.
“Merin & Her Very Bright STAR” with Lori Mier: https://youtu.be/2Wp3_8vWNYM
Lori is an author, ecotherapist, photographer and advocate. When Lori was only 3 years old she tragically lost her mother and father in a car accident. Lori along with her 4 year old sister were thrown out of the car and spent the night in a ravine, after her parents went down with the car. She bravely used her experience to help others learn how to heal and cope through nature, the stars and positivity.
“Greeting Grief” with Bex Mastin: https://youtu.be/bxIxsz-5D_o
Bex Martin works in Public Health and is a Hospice Volunteer. After her father’s death she decided to start her own greeting card company, in his honor, to provide a space to process emotions and work through grief.
“7 Ways To Treat Yourself with Kindness While Grieving,” @What’s Your Grief: Article by Eleanor Haley, MS https://youtu.be/PXBdaCyGbDo
TJ and Taj Recap: April 1st was Dee Dee’s Birthday! Taj “Mom has been gone more years now than I had with her when she was alive.” (28 years since her passing). “We grieve her most as she’d have been a great grandma to our children.”
“The parole hearing of her murderer was just denied, and this 80+ year old man is painting himself as a victim, therefore it’s more mentally healthy for ourselves and our families to keep him behind bars, than to have him jeopardize the celebrity limelight to tell his story which would open up trauma as well as old and new wounds for our family. We’re thankful to everyone who has been and is supporting us through everything.”
www.whatsyourgrief.com
“Cycle of Lives” with Author David Richman: https://youtu.be/XYgxONI9yBE
David went from being an overweight, sedentary smoker to completing 50+ triathlons. David is a motivational speaker, trainer, consultant and transformation expert.
Dr. Pantelyat is a Ukrainian born, movement disorders neurologist at the Johns Hopkins University School of Medicine, where he directs the Johns Hopkins Atypical Parkinsonism Center and the Johns Hopkins Center for Music and Medicine. Dr. Pantelyat's work is focused on the discovery and validation of diagnostic and prognostic biomarkers for Parkinson’s disorders and on music-based treatment of neurodegenerative diseases. He is a 3rd generation neurologist, who got to help his mom at her lab, when they moved to the USA, in Philadelphia.
- 10:35 “Parkinsonism” describes what happens to someone who suffers from shaking, could be any body part, usually the hands, muscle stiffness, rigidity, loss of fine motor control and coordination. Not being able to move as quickly as you’d like, changes in posture, stooping, walking.”
- “Dementia isn’t a diagnosis. There are reasons people need help for one or more daily activities- Driving, cooking, finances. Many things cause and co-exist to lead to dementia developing. The inability to do things.”
- “Huntington’s disease- Woody Guthrie. Generic disease that gets generationally passed down, disorder that spans neurology and psychiatry. Changes effect mood, cognitive function, and movement disorders. Devastating disorder that kills from 18 years from the onset of the disease.”
- “None of these diseases above have a cure at this point. We have a lot of work to do in the clinical science and research community.”
- “I truly believe we are discovering ways to help treat these diseases.”
- “Music drumming enhanced the lives of patients, however for things to improve, consistent exercise and drumming practice needs to happen to maintain the benefits”.
- 36:27 “What has been The most challenging part for implementing your music programming?” “Recruitment. Equitable recruitment. To ensure that all community members have access to these trials and programs.”
- “Music speaks to people in a way that regularly talking cannot.”
- “The rhythm itself drives changes in the brains of people with Parkinson’s, which can meaningfully improve walking, balance and potentially prevent falls.”
- 43:45: “What can we do to avoid Alzheimer’s as much as possible?” “Regular exercise. 150 mins a week as a goal. The Mediterranean diet, leafy greens, fish, olive oil. Pick up music, singing, something new to train your brain.” “Brush your teeth with your non-dominant hand, use a fork with your non-dominant hand.” “Listen to music”
- https://thepenngazette.com/the-well-tempered-neurologist/
- https://www.hopkinsmedicine.org/neurology_neurosurgery/research/labs/udall_center/team/alexander_pantelyat.html
“Autism Acceptance Month & Cultivating Traditions After Loss” with Amelia Green:
https://m.youtube.com/channel/UCIXinLVvBF744XyijGHY3sQ
Amelia pursued several degrees in Autism, her highest, a Masters of Autism in ABA(Applied Behavioral Analysis), when her young son Alex was diagnosed with Autism. Alex’s complex diagnoses and needs impacted Amelia’s life, her two other children, their community and everyone they encountered/encounter. Alex died in 2021 at the tender age of nearly 14, after bravely fighting seizures for several years. Lori wakes up daily with the goal to have and promote as much joy and love as Alex did.
- “Autism Awareness has changed to Autism Acceptance where community and society at large are becoming more accepting and understanding of how people live daily with Autism.”
- “There is a fine line between seeing the person and saying hello or asking if someone needs help.”
- “Awareness is I see it, Acceptance is I see it and I want it to be part of my world too.”
- 16:27 “What can we do to help someone who has to deal with the pressure of Autism in this world, or to feel better?” “To listen and not respond. Autism is different for everyone. Everyone is unique and beautiful.”
- 18:45 “What did the one year mark look and feel like for you personally?” “I was really purposeful and planning for that day, I booked us a vacation, we took a wild and crazy trip to Florida. On the morning we lost Alex we went to the ocean at sunrise and put some of his ashes in the ocean. We decided to do this every year to bring Alex with us in a safe way.”
- 23:30 “For a parent who has just learned their child has Autism, what advice would you tell them?” “It’s going to be OK, it’s really going to be OK. It’s not gonna be a version of what you picture, but it will be Ok. There is a lot of grief of the dreams for what you had planned. It’s really scary, and that’s ok. It’s really OK to ask for help. Don’t blame any fault on yourself. You have the ability to build a beautiful future for you and your child.”
- 25:51 “What would you tell a teenager who has Autism?” “Please tell your story. So many people wanna hear it. I want to hear you, your peers wanna hear it. I want my children to be better people than I am to help others with disabilities.“
- 28:28 “What is the biggest misconception that the world has on Autism?” “That everyone with Autism is the same way. That everyone is the same like the person with Autism in the movie or on TV is.. It is a beautiful spectrum, a rainbow of the most beautiful people. Do not make any assumptions because you will miss the beauty.”
- “When you take your children to the playground that’s a huge opportunity for inclusion to point out children who are doing things a little bit differently, which helps them with acceptance.”
“Merin & Her Very Bright STAR” with Lori Mier: https://youtu.be/2Wp3_8vWNYM
Lori is an author, ecotherapist, photographer and advocate. When Lori was only 3 years old she tragically lost her mother and father in a car accident. Lori along with her 4 year old sister were thrown out of the car and spent the night in a ravine, after her parents went down with the car. She bravely used her experience to help others learn how to heal and cope through nature, the stars and positivity.
- 11:22: “What has helped you cope with the death of your mom and Uncle Michael?” (To TJ and Taj)
- Through the healing process Lori was able to write a children’s book to help normalize grief and grieving in children.
- “Merin is sad, honest, kind and magical. It’s a story of resiliency.”
- “When we’re dealing with something so heavy, we need closure. No one asked me growing up how I was doing. That led to me daydreaming a lot which led to me writing a book.”
- 20:55 “How do you cope with loss?” “Nature has been helpful as a child all the way into the present. Hold onto friendships and relationships. Merin writes down things that helped her cope.”
- Eco-therapy- “hiking and being outside is healing and allows the natural process to talk, especially for children.”
- “Nature can be healing. We take care of it and it takes care of us.
- 42:16 “Do you have any advice on regret after loss?” Constant rebuilding- give yourself permission to forgive yourself, to take a step back to do something different, to work on being a better person.
- Instagram @grief_project_merin
- https://www.bluemountainpathcoaching.com/shop-1 Merin and the Very Bright STAR book.
“Greeting Grief” with Bex Mastin: https://youtu.be/bxIxsz-5D_o
Bex Martin works in Public Health and is a Hospice Volunteer. After her father’s death she decided to start her own greeting card company, in his honor, to provide a space to process emotions and work through grief.
- “Most greeting cards are written in present tense, nothing out there said “You were a great Dad and I miss you!”
- Bex’s motivation to launch her greeting card line, despite her fear stemmed from the connections she’s formed with other grievers, as these cards validate the feelings and emotions of what marking milestones of those we love and miss entails.
- The greeting cards provide a platform to have a time capsule of events that the dearly departed has missed from year to year, “Happy Father’s Day, Dad! This year I started a new job, etc.”
- Bex’s goal is for those struggling yo be able to come to the website, to see themselves and what they’re going through reflected in the cards
- “Just because your loved one died, doesn’t mean the love and relationship died.”
- www.Greeting-Grief.com
- Instagram @GreetingGrief
- [email protected]
“7 Ways To Treat Yourself with Kindness While Grieving,” @What’s Your Grief: Article by Eleanor Haley, MS https://youtu.be/PXBdaCyGbDo
TJ and Taj Recap: April 1st was Dee Dee’s Birthday! Taj “Mom has been gone more years now than I had with her when she was alive.” (28 years since her passing). “We grieve her most as she’d have been a great grandma to our children.”
“The parole hearing of her murderer was just denied, and this 80+ year old man is painting himself as a victim, therefore it’s more mentally healthy for ourselves and our families to keep him behind bars, than to have him jeopardize the celebrity limelight to tell his story which would open up trauma as well as old and new wounds for our family. We’re thankful to everyone who has been and is supporting us through everything.”
www.whatsyourgrief.com
- Don’t compare (yourself to others or your expectations about grief)
- Accept that a wide range of emotional, physical and cognitive experiences are normal in grief
- Give distressing emotions and experiences the time and attention they need.
- Ask for help/accept help
- Focus on basic needs like breathing, sleeping, eating, connecting and caring
- Give yourself a break.
- Love the person who died unapologetically
“Cycle of Lives” with Author David Richman: https://youtu.be/XYgxONI9yBE
David went from being an overweight, sedentary smoker to completing 50+ triathlons. David is a motivational speaker, trainer, consultant and transformation expert.
- “Transformation comes out of grief,” David bravely left an abusive relationship to protected himself and his 4 year old twins, at the same time his sister was facing terminal cancer.
- A turning point for David was when a friend said to him, “Stop fixing everyone’s problem and focus on yourself in the mirror”.
- “I learned a lot of lessons in life, but not how to apply them to myself.”
- “If you can live and be at peace that life is going to be hard, you can work through things. When you accept that, it’s not as hard.”
- “You never know how what someone’s dealt with 5 minutes or 20 years ago. Learn how to connect authentically.”
- David’s Book: “Cycle of Lives: 15 People’s Stories, 5,000 Miles and a Journey Through the Emotional Chaos of Cancer.”
- www.cycleoflives.org