This interview is with Lilian Sjoberg who works extensively with persons currently experiencing Parkinsons symptoms. Parkinsons is traditionally diagnosed as a disease which only gets worse over time. This book challenges that view.
The book is based upon the connection between stress and Parkinson’s. Can you elaborate on this connection?
What’s the most common misconception about Parkinson’s that your book challenges?
This book features interviews – why this format, and what makes these stories so compelling?
What are some practical stress reduction strategies readers can implement after reading your book?
Many people feel hopeless when diagnosed with Parkinson’s. How does your book address this?
Can you share a brief, inspiring story from one of the interviewees?
What makes this book essential reading for everyone, not just for those with Parkinson’s?
Many people with Parkinson’s feel isolated. How does your book foster a sense of community and shared experience?
Interviews of people with a Parkinson’s diagnosis from around the world reveal that it does not have to be this way. Instead, hope and self-reflection can be part of the solution to a better life.
People can recover or improve, not via quick fixes or miracles, but with supporting psychotherapy and an understanding of why the body, due to chronic stress or trauma, has ended up reacting the way it does.
Movement often becomes more difficult as we age. When we add Parkinson’s Disease to that mix, we can feel trapped. Let’s examine how we can reclaim functional and pleasure in movement using the Feldenkrais Method of Somatic Education. Learn how working with curiosity and movement experiments awakens your brain to possibilities that were unavailable just a few moments ago. You will get a chance to do small movement experiments within this session from a seated position. Come ready to be surprised!
Cynthia Allen has been working in wellness practices, healthcare management, and organizational consulting for over 35 years. In 2001, she became a Certified Feldenkrais® practitioner and, more recently, a Senior Trainer in Movement Intelligence. She is the co-creator of the Integral Human Gait theory and the creator of Your Learning Body, an online Feldenkrais community
She has found Feldenkrais Method and Bones for Life to be a vital part of finding personal health despite life challenges. In her private practice, she has had the privilege of working with many people with Parkinson’s Disease, helping them to move through daily life with increased ease.
Cynthia has written about the Feldenkrais Method, pain, and trauma for the Alternative and Complementary Therapies Journal as well as the online Chronic Pain Partners. She has conducted and published a research paper: Alternative Movement Program in Geriatric Rehabilitation in the Functional Neurology, Rehabilitation, and Ergonomics.
She lives in Cincinnati, Ohio with her husband, business partner and NLP guru, Larry Wells and their new puppy Darby. Today her practice is held online allowing her to serve more people than she ever realized was possible.
Do you currently experience worrisome tremors? If so, I invite you to watch my short video below and listen to my 30 minutes interview with Bobby Krause, founder of Be Still Foundation, on his triumph over tremors.
Bobby Krause discusses how Focused Ultrasound changed his life below:
As a college athlete turned sales executive and father of two, I loved to live large and make the most of every moment. This was until a “nervous tick” began to occur in my left arm. After a series of doctor’s appointments, MRI’s and a pivotal appointment with a neurologist in 2016, my and my family’s lives were forever altered when I was diagnosed with young onset Parkinson’s Disease at the age of 42.
After my diagnosis, the harmless tick evolved into a relentless, debilitating tremor throughout the left side of my body. These tremors caused constant pain, embarrassment and a significant decline in my quality of life. I struggled to focus on life happening around me. I could not conduct business meetings without distraction. The tremors escalated greatly under the pressure of intense situations like coaching my son’s basketball games. I wondered how life could go on this way.
My Triumph Over Tremors
In 2020, a glimmer of hope emerged when I learned of clinical trials underway for a groundbreaking tremor treatment, called Focused Ultrasound. Thanks to an incredibly generous employer, along with an exceptional medical team at the University of Penn, my life-changing therapy was scheduled for June of 2022.
June 9, 2022, is a day I will never forget. While traveling to the University of Penn for my Focused Ultrasound therapy, I was full of hope, yet I could see my tremors intensify and feel my muscles tighten from the stress of it all. Little did I know, the profound physical and emotional impact the next two hours in the MRI tube would have on my life.
Laying fully conscious on the MRI table was surreal and incomprehensible. In real time, I communicated with the medical staff how and what I was feeling during the five sonication’s I underwent that day. While inside the tube during the third sonication, for the first time in nearly a decade, my body surrendered the tremors, my muscles eased, and the rigid tension melted away and I was finally able to…Be Still!
I’ve had the distinct honor of sharing my journey with Parkinson’s Disease and my Focused Ultrasound therapy experience at prestigious venues like Capitol Hill, Princeton University and within communities such as Rock Steady Boxing. Through these interactions, I’ve witnessed firsthand the hope my story instills. However, this optimism is tempered by the lack of awareness, availability and financial hurdles many face in accessing this treatment. These exchanges with those full of hope but greatly in need, are what sparked the start of Be Still Foundation.
Below are listed the questions I ask him during the interview as he discusses his triumph over tremors.
Tell me about yourself Pre-Parkinson
When were you officially diagnosed with Parkinson’s and what were your symptoms?
How did you initially treat your symptoms and what were the pros and cons of those treatments?
How and when did you become aware of Focused Ultrasound?
Once you learned about focused ultrasound what were your next steps with your family and medical team?
Can you take me through the day of your scheduled treatment?
What side effects did you experience from the procedure?
I understand it’s now been two years since your procedure, are you experiencing tremors again?
What led you to create the Be Still Foundation?
For those interested how can they support the Be Still Foundation?
My guest is Dr. Carolyn Dean, MD ND (a medical doctor and a naturopath doctor) who has devoted 50+ years applying the science of medicine and the gifts of nature to help people feel better, find more energy and take control of their personal health. The focus of her presentation today is on magnesium.
Promoting a positive message of health, vitality, and well-being, Magnesium – The Missing Link to Total Health (Revised)® provides evidence-based scientific research on magnesium’s role in human health. Website: https://drcarolyndean.com/
Alice A. Holstein, Ed.D was diagnosed with bipolar mood disorder at the age of 51, which interrupted her career and produced some 12 years of intense suffering with many manic episodes, many hospitalizations, thousands of dollars spent and overall, a bleak prognosis of recovery. She lives now, as an elder, with a full if careful life of extraordinary wellness despite still being on medication. She has a dramatic story to share about how she developed a revolutionary understanding of mental health recovery which she believes can be at least partially related to recovery with Parkinsons.
In her presentation she will explain this potential correlation by first enumerating the comparisons, such as that she too was given a bleak prognosis and told that heavy medication was required. She also understands that Parkinson’s can often produce depression in those who suffer. Her thoughts can help people specifically deal with that diagnosis. Alice believes that illness in general should be treated as a whole person approach—holistically, to include mental, emotional, physical, spiritual and social aspects. The medical profession does not proceed in this fashion. She accidentally discovered this more complete framework and has developed specific understandings that may be helpful to those dealing with Parkinsons. She also believes that recovery is partly a matter of developing one’s higher consciousness.
Her ideas and words will likely challenge, inspire and encourage the listeners on this broadcast to continue and add to the kinds of things they already are doing to improve their conditions vs. degenerate. Her example serves as a beacon of hope to living a healthier life regardless of one’s diagnosis, going beyond present practices to achieve stronger wellness and increased satisfaction.
Below are questions Alice answered during the interview:
What do you think are the major comparison’s between dealing with Parkinsons and dealing with mental illness? Why can this framework be a potentially helpful recovery correlation?
What is the essence of your dramatic recovery story and how you gained your expertise?
What are some of the specific things you did to get well?
Why is the brain so important in healing?
*Note: Alice’s website at www.aliceholstein has an article, “Heal Yourself and You Heal the Culture” which is pertinent. Go to the “site map” and look for this title. See also another title, “Things Helpers and Helpees Can Do.”
What part did going back to work at age 65 have to do with your recovery?
What role might volunteering or otherwise minimal work contribute to recovery?
What part did participating in a Spiritual Companioning Preparation program (3 years) contribute?
What do you mean by “The Hero’s Journey” and why it may be important to wellness?
What do you mean by saying that a Parkinson diagnosis and mental illness are whole person illnesses?
What do you mean by saying that suffering can be a purifying experience?
How did you manage to survive while living periodically on the streets in your 60s?
How do you maintain your wellness?
How much do you estimate your illness cost?
What was the hardest aspect of your illness that you dealt with?
What is the largest gift you’ve received from surviving and thriving?
What are your 2 books about mental illness and will they help me deal with Parkinsons? What about the 1992 book, written under my married name, Mack? Does it possibly relate as well?
Retired Australian Naturopath and parkinson’s sufferer, Ian Ridgeway will be explaining an unusual and unique therapy that regenerates stem cells using skin patches. When applied to the skin, they use the body’s own heat to stimulate certain salts and sugars in nano particle size to reflect very specific light frequencies which then stimulates functions in cells. This is a form of phototherapy, or photobiomodulation. His latest patches stimulates an enzyme called Copper Peptide which activates our dormant stem cells. By the time you reach the age of 60yrs old, 60 – 90% of your stem cells are dormant. Inventor and founder and CEO of the company who sell them has put the technology into a small, affordable easy to use patch that you just place on your skin! David has around 80 patents on the technology and a similar amount of clinical studies using them. He even has worked out a way you can pay for and even make make money sharing with others.
Ian, who was was diagnosed with Parkinsons in 2019, reports that, So far says he sleeps far better and, can walk without a stick in his “on” times, have far more energy now able to work in his garden and orchard most of the day and his wife has more energy after they both have been using the patches for about 4 weeks of use.
Caregiver stress can arise when a person is so focused on the needs of the person being cared for that the person’s own physical and emotional health are neglected.
Signs of Caregiver Stress:
Depression
Withdrawal
Anxiety
Anger
Difficulty Concentrating
Changes in Eating Habits
Insomnia
Exhaustion
Drinking or Smoking
Even if you love your care recipient, you may start yelling at them more or have difficulty controlling your temper with other people as your stress levels rise.
The Kindness Dialogue differs from all of the standard strategies. It is based on the Enneagram.
Robert and I have recorded interviews three times in the past:
September 2016: Five years no medications. Parkinson’s improving. How I had gone for 5 years without meds and was doing well using exercise and yoga
January 2017: Wholistic (or holistic) how different PWPs approach their treatment.
October 2018: Shifting the Parkinson’s disease mindset.
This is my fourth appearance on the show today, and I still hold to my beliefs.
EXERCISE. EXERCISE, EXERCISE. I cannot exercise as hard as I did before. Gradually I had to walk more and jog less. Could only 3 – 4 miles.
More convinced than ever that MINDSET/ATTITUDE is the key, PARKINSON’S IS A CHALLENGE, NOT A CURSE.When I was formally diagnosed, I was 70 years old. Life expectancy for me was 84.1. Well, now I’m 82.4. In a year and a half, I will have reached my life expectancy.
YOGA remains critical.
WAIT UNTIL you really must take Levodopa. Levodopa induced dyskinesia (LID) is a real deal and can be disabling. Google it on YouTube.
Let’s look at my life since we last met, year by year.
2018 – I shot a video titled So High So Low for the “I HAD A DREAM PROJECT” where I hiked a three mile walk trail and climbed a thousand feet.
That year I also went to Uganda to demonstrate the practices I used to manage so long without meds. (Robert, this is quite a tale, plus I have pictures.)
2019 – After directing the local Parkinson’s support group, I resigned so new blood could take over.
BUT: New symptoms emerged that I didn’t know about:
Anomia: a language specific disturbance arising after brain damage whose main symptom is the inability of retrieving known words. But it’s not dementia!
Pseudo Bulbar Affect Crying or laughing excessively upon feeling any deep feeling.
Dysphagia: difficulty or discomfort in swallowing as a symptom of disease. It starts out with mucus as postnasal drip. Get to an OT!
Oily, flakey skin
Sleep disturbances. Fall into deep sleep in the middle of the day. And then don’t sleep well at night.
Pain in bed at night. Interfered with sleep.
2020 – It was a remarkable and horrific year. PANDEMIC!
No more yoga classes! No gym with weightlifting. Social interaction approached zero.
2021 – Then, a condition worse than Parkinson’s emerged: Major Depression.
March 2021 – Fell and shattered right knee – 16 days in hospital.
July 2021 – Fell and broke my right hip.
August – Severe depression, I became suicidal.
September – Chose to have a course of electro-convulsive therapy (ECT)
October- It worked, and my PD improved a lot.
The falls were due to the antidepressant I was taking may increase fall for people with Parkinsons.
LESSON: Make sure you MD goes through all meds in case a med might make falling more likely
My story with Depression
Family history is strong.
Parkinson’s did not cause my suicidal depression, genetics and environment did.Antidepressant medication failed to work and led to my falls!
2022 – I returned to my new normal. And that’s where I am today. I just have more symptoms and feel weaker.
I followed up with PWPs who I have advised in the past.
It became clear to me: I want to coach people with PD.
Martha Carlin brings us up to date on the latest Parkinson’s Microbiome findings and research and help connect the dots to our environment and increasingly processed and toxic food systems with idea on how to build a healthy microbiome to improve the symptoms of Parkinson’s. She will discuss environmental toxins, diet/nutrition, stress management and exercise as ways to impact the course of your disease and how to build your own health timeline to understand what may be impacting the course of your illness and how to change the trajectory.
