Amyloidosis, Peripheral Neuropathy and Mindfulness - #1 Mindfulness Series

Amyloidosis, Peripheral Neuropathy and Mindfulness -#1 Mindfulness Series

10/3/2020

Henry T. Hill


June 18, 2018 I learned I had Amyloidosis Al, a rare, 9 cases per million, and incurable disease. After researching the disease and treatment options, I choose the Mayo Clinic in Jacksonville (six hour drive from Marco Island. I called for an appointment (no referral needed) and began treatment July 30, 2018 with Dr. Taimur Sher.


September 17, 2018 I began a schedule of once a week chemo treatments of dexamethasone 20mg and Velcade near home in Naples at the Florida Cancer Specialists in September 2018 and finished 16 chemo treatments in January 2019. December 18, 2018 I developed peripheral neuropathy (PN) in my feet and legs. Having had six kidney stones over the years, I can say that PN pain is less than a kidney stone, but PN pain does not pass or go away. Day and night PN pain comes, grows, lessens, and passes for a short time.


Chemo cancer doctors understand pain. My chemo doctor, Dr. Newman, prescribed first gabapentin, but when it did not work, Dr. Newman prescribed Hydroco/APAP 325mg, four a day if needed, and prescription Ambien or Zolpidem 10mg. Dr. Sher and my Mayo pain doctor, Dr. Palmer confirmed my PN and agreed with Dr. Newman's prescription and added a custom scripted gel Amit/Keta/Lido at 2/5/5% to apply twice a day and a prescription for physical therapy.


I knew I had to wean myself off pain pills and ambien and worked my mindfulness techniques I had used since childhood and while teaching at Roosevelt High School from 1968-1999 and teaching here in Florida from 2006-2018.


From December 2018 to June 2019 I worked the problem of convincing my brain, the somatosensory area, that the pain nerve signal was really just a "strange" nerve signal, not pain while I slowly weaned myself off pain and sleep medication. It worked. By the end of June 2019 I stopped taking any pain and sleep medication and have not taken again.


I use the following mindfulness techniques:


Elisabeth Kubler-Ross and Five Stages to Acceptance

Pragmatism

Rational Emotive Behavioral Therapy

Transactional Analysis

Making Sense with General Semantics

Somatosensory Part of the Brain and the Role of Behavior Chemicals, Emotions and Physical Activity

Placebo Effect Concept

Bloom’s Taxonomy

Marshall McLuhan and The Medium Is the Massage

Words and Questions and Grammar and Chaos

Learning Theories

Poems and an Essay and Quotes

Feelings and Reactions


Shortly after my first visit with Dr. Sher July 30, 2018 at the Jacksonville Mayo Clinic, I joined the Amyloidosis Support Groups (AL-Light Chain-Primary, a private, patients, caregivers, loved ones, members only moderated Facebook site with 4,145 members with an Admin/Moderator. Shortly after I developed peripheral neuropathy (PN) December 2018 and received an official diagnosis of PN by Dr. Newman at the Florida Cancer Specialists and confirmed by Dr. Sher and Dr. Palmer at the Jacksonville Mayo Clinic, I joined the Peripheral Neuropathy Support Group, a private Facebook group with 11,998 members with two Admins and one Moderator.


After reading and posting comments regarding my treatment and experience on both Facebook support group sites, I decided to write a book, "My Journey From Amyloidosis AL to Chemo to Peripheral Neuropathy and How I Used Mindfulness Learning Tools to Improve My Quality of Life" (February 17, 2020 on Amazon with 118 pages and 317 KB). This book chronicles the journey from Amyloidosis Al to peripheral neuropathy to mindfulness with an explanation of mindfulness and how I used it.


Because Amyloidosis is so rare and because of a conversation with my Mayo Clinic doctor, Dr. Sher, where he told me how difficult it was to treat patients with PN and fibromyalgia and chronic fatigue syndrome and other such diseases, I decided to pull out the mindfulness techniques section from the Amyloidosis book, expand it and write another book, "Mindfulness vs Disease and Debilitating Symptoms Such As Pain, Fatigue and Loss of Coordination" (September 23, 2020 on Amazon with 153 pages and 3359 KB). This book focuses expands on the mindfulness techniques I used. This book is for anyone struggling with chronic symptoms that restrict their quality of life such a fibromyalgia and chronic fatigue syndrome.


Just for the record since June of 2019 with no pain or sleep medication I receive "strange" nerve signals every day and night from my peripheral neuropathy, but I can walk four thousand steps a day and sleep at night only waking up once not five or six times as I did from December 2018 to June of 2019. As of now I see a doctor every three months for blood tests and consultation alternating between my Naples chemo doctor, Dr. Newman and my amyloidosis Mayo doctor, Dr. Sher. As of now my amyloidosis al is holding, and so, I do not need to go back on chemo. Life goes on.


My lesson to you:

Do your research by Google searching using space “pdf” at the end of a search (peripheral neuropathy and pain pdf). The pdf yields scholarly articles.


Mayo Clinics, in Rochester, MN, Phoenix and Jacksonville, offer a biography of each doctor, and on the Mayo Clinic website the doctors list their publications and offer a button to click to request an appointment. My Amyloidosis doctor, Dr. Sher to date has co authored 71 publications. Note: my Naples GI doctor who found through a routine endoscopy biopsy my amyloidosis had never seen amyloidosis. My Florida Cancer Specialist doctor administers my chemo coordinating with my the Mayo doctor, and my Florida Cancer Specialists doctor has four patients who have amyloidosis all with other primary amyloidosis doctors. For the record, during my September 2, 2020 visit with my Mayo amyloidosis doctor, Dr. Sher, he said he was glad to see because half of amyloidosis patients are dead in one year, and here I am seeing Dr. Sher from July 30, 2018 to September 2, 2020. I tell Dr. Sher it is because he is on my team, and I pray for him every day. He is on my daily prayer list.


Do your research to get the best diagnosis.

Do your research to get the best treatment.

Do your research to learn to work on yourself to give yourself the best quality of life possible.

To read excerpts from my mindfulness book, see my Mindfulness Series essays posted on the blog, “Latitude Attitude” at https://latitudeattitude.blogspot.com/ and “Posts” on Marketplace Mission Learning Center at http://marketplacemission.squarespace.com/. Email me at henrythill@gmail.com.

Internal Dialogue - #2 Mindfulness Series

Internal Dialogue - #2 Mindfulness Series

10/7/2020 

Henry T. Hill

10/3/2020 I posted on Facebook my amyloidosis al and peripheral neuropathy journey with some reference to how I applied mindfulness to my journey. To apply mindfulness you must become aware of your internal dialogue and record key thoughts in your daily journal and address daily your internal dialogue to change it from an unhealthy and unproductive dialogue to a healthy and productive dialogue. Mindfulness tools offers ways to become aware, to record and to address your internal dialogue. This task presents a challenge because you have spent your lifetime up to now learning patterns that repeat in your internal dialogue. You can’t unlearn these patterns, but you can learn a new pattern and substitute the new pattern when ever the old pattern shows up.

Today, 10/7/2020, I post how to develop and use your internal dialogue to begin your mindfulness journey. My next post will explain how I used Elisabeth Kubler-Ross and Five Stages to Acceptance. I will continue to post the following topics:

Elisabeth Kubler-Ross and Five Stages to Acceptance
Pragmatism
Rational Emotive Behavioral Therapy
Transactional Analysis
Making Sense with General Semantics
Somatosensory Part of the Brain and the Role of Behavior Chemicals, Emotions and Physical Activity
Placebo Effect Concept
Bloom’s Taxonomy
Marshall McLuhan and The Medium Is the Massage
Words and Questions and Grammar and Chaos
Learning Theories
Poems and an Essay and Quotes
Feelings and Reactions

Internal Dialogue - Goal: To identify and remove “Self-suggested stressors” and to replace them with a healthy and productive internal dialogue

Internal dialogue, internal monologue, self-talk, inner speech, inner discourse or internal discourse all refer to an inner voice tied to sense of self, self-reflection, self-image, critical thinking, emotions and subvocalization. Human awareness often sees this internal dialogue as the “mind.” Negative self-talk contributes to depression, anxiety and other mental disorders. Cognitive therapy aims to improve functioning by helping people identify and change negative self-talk by checking reality, looking at alternatives, seeking other perspectives and setting realistic goals. The Voices Within by Charles Fernyhough published in 2016 offers an exploration of the “inner voice” and its role in thinking by helping regulate behavior, motivate positive behavior and help one become more conscious of their internal dialogue. Fernyhough stated that one quarter of the people studied engaged in inner speech which leaves many people who do not actively engage in inner speech. Fernyhough also described four different categories of inner speech: faithful friend, ambivalent parent, proud rival and calm optimist.

A Google of “Critical Inner Voice” (CIV) produces over 56,000 results.

The field of psychoneuroimmunology (PNI) takes an interdisciplinary approach incorporating: psychology, neuroscience, immunology, physiology, genetics, pharmacology, molecular biology, psychiatry, behavioral medicine, infectious diseases, endocrinology and rheumatology to study the interactions between the nervous and immune systems and between mental processes including internal dialogue and health. “Stress and Psychoneuroimmunology Revisited: Using mind-body interventions to reduce stress” describes the normal state of the human body, termed homeostasis, as that state that maintains balance and health. Disruptive factors that cause stress, any external or internal demand placed on the body, affect the immune system including the neuroendocrine system and may disrupt the body’s ability to maintain homeostasis. Mindfulness tools using internal dialogue offer ways to move toward and to maintain homeostasis.

Examine thoughts with a critical eye to identify, to evaluate and to change unhealthy, unproductive thoughts into healthy and productive thoughts. Mindfulness offers tools to address these unhealthy and unproductive thoughts and to make changes to ensure the healthiest mind outcomes possible in any situation so as to restore and to maintain homeostasis.

Tips to develop and to expand an internal dialogue:

First, accept that thought exists as one of the important causes of actions which, when repeated, these thoughts become habits, and these habits become the basis of personality. Second, accept that the brain maintains a level of activity 24/7, day and night, year after year. Third, thoughts may take many forms such as feelings, dreams, images, sounds, smells, ‘flashbulb’ memories in the brain, but when they take shape as words, mindfulness techniques can work to shape those thoughts. Mindfulness can also address feelings, images and even memories.

According to “What are thoughts made of?” From the MIT School of Engineering, the human brain is composed of about 100 billion nerve cells (neurons) interconnected by trillions of connections (synapses) with some connections sending up to 1,000 signals per second all of which somehow produce thought.

Here is what MIT researchers think happens when you read the following words.

The photons associated with the patterns of the letters hit your retina, and their energy triggers an electrical signal in the light-detecting cells there. That electrical signal propagates like a wave along the long threads called axons that are part of the connections between neurons. When the signal reaches the end of an axon, it causes the release of chemical neurotransmitters into the synapse, a chemical junction between the axon tip and target neurons. A target neuron responds with its own electrical signal, which, in turn, spreads to other neurons. Within a few hundred milliseconds, the signal has spread to billions of neurons in several dozen interconnected areas of your brain, and you have perceived these words.

So asking how do thoughts form in the brain means asking for an explanation of how trillions of connections and billions of simultaneous transmissions come together in a brain to form a thought. Researchers believe that the brain links thoughts together in ways: that may promote and sustain homeostasis, that may have little or no effect on homeostasis, or that may disrupt homeostasis and therefore affect health and happiness.

Unsupervised Learning

Hebb’s Theory - “neurons that fire together wire together” ties together psychology and neuroscience. Donald Hebb in his 1949 book, The Organization of Behavior, foreshadowed what researchers now call “spike-timing-dependent plasticity” which helps explain associative learning where simultaneous activation of cells leads to synaptic strength between those cells which becomes the basis of unsupervised learning. Hebb’s Theory helps explain how Albert Ellis’ Rational Emotive Therapy argues that events do not trigger reactions. Events trigger learned belief systems and these learned belief systems trigger reactions. Unsupervised learning can result in learned belief systems which disrupt homeostasis. Mindfulness tools applied to internal dialogue offer ways to replace (unsupervised) learned belief systems with healthy, productive and positive (supervised learned) belief systems which can lead to a healthy and positive life.

The article, “How language shapes thoughts - what researchers know,” suggests words work as glue by allowing different experiences to form under one label. Often the label or umbrella denotes something we cannot see or touch. Compare the thought of “banana” with the thought of “freedom” by Googling each term and clicking on images. Clinical studies suggest that the brain stores/processes concrete concepts such as “banana” in a different area from abstract concepts such as “freedom.” Researchers estimate that 70% of the words used everyday designate abstract concepts, but most research on how the brain processes language base the research on words denoting concrete concepts only. This leaves abstract concepts, 70%, open to study.

Mindfulness can maintain positive thoughts which will manifest in positive behavior which will manifest into a healthy and positive homeostasis. Becoming conscious of thoughts, of their type and quality, allows one to stop certain thoughts, to divert thoughts, to modify thoughts, and to replace thoughts with positive, creative and powerful thoughts. To stop certain thoughts requires moment-to-moment discipline 24/7. Accepting this mindfulness premise means feelings of hurt, fear, hatred, denial, guilt, helplessness, hopelessness, irritability, loss of appetite, loss of energy, loss of interest in daily activities, loss of pleasure, low self-esteem, restlessness, sadness, insecurity, jealousy, revenge, anger, unhappiness and depression come from thoughts that have become part of belief systems. Through mindfulness training you may learn to modify your belief system and therefore modify your feelings and behavior and even modify how your body reacts to the challenges of your disease.

Start by identify four types of thoughts: positive thoughts, negative thoughts, neutral thoughts and waste thoughts and try to eliminate negative and waste thoughts. Use mindfulness by setting alarms to monitor thoughts throughout the day. Get up early in the morning and observe your mind. Repeat the same exercise throughout the day and before going to sleep. Identify the thoughts, place them in the four categories and respond using mindfulness practices. Through conscious mindfulness one can change belief systems. See “Thought Consciousness: A Panacea For All Ills and Evils of Mind.”

Here is another idea to open yourself to productive and healthy mindfulness: hedonia vs eudaimonia and the six components of Ryff's six factor model for psychological well-being. Of the 70% of abstract concepts “happiness” presents great challenges. Psychologists present happiness as hedonic happiness - pleasure and enjoyment eudaimonic happiness - meaning and purpose. Both concepts come from the ancient Greek world and have supporters in our modern world. Most researchers believe that people require both to flourish.

If you have not experienced regular inner conversation, this new experience will open up whole new worlds. Apply mindfulness every day to reduce stress, to open yourself to the wonders and joys of the world around you and to the wonders and joy of the world inside you.

Now start journaling every day. I use Google Docs (free with a Google Gmail). I can view my journal from any device connected to the internet. I cut scrap paper into quarters and clip them together using a paper binder clip and take daily notes on the quarter sheets of paper which I then transfer to Google Docs the next morning. I started my journal when I received my diagnosis of amyloidosis on June 18, 2018. My journal now number 87 pages with over 50,000 words. Each day start with “Wednesday, 10/7/2020” and include the following: appointments, tests, drugs,reactions, doctors, nurses, foods, sleep/nap times, exercise, behaviors, chemicals, emotions, physical activity, and anything that helps to improve your quality of life and anything that decreases your quality of life. Put a bold heading above a day when you start or stop a drug or a treatment or anything that stands out as a change. I have added topics at the end of my daily journal such as: prayer list, special people, trivia, Bread baking, books, movies and TV shows watched, my prescription journey summary, new drugs that I may have to take, What I have learned rules, my personal prayers, etc.

For more see "Mindfulness vs Disease and Debilitating Symptoms Such As Pain, Fatigue and Loss of Coordination" by Henry T Hill on Amazon (September 23, 2020 and 153 pages and 3359 KB)

Works Cited

Bolognesi, Marianna. “How Language Shapes Your Thoughts - What Researchers Know.” ResearchGate, The Conversation, 26 July 2018.

de Sousa, Paulo, et al. “Inner Speech and Clarity of Self-Concept in Thought Disorder and Auditory-Verbal Hallucinations.” The Journal of Nervous and Mental Disease, Lippincott Williams & Wilkins, Dec. 2016, www.ncbi.nlm.nih.gov/pmc/articles/PMC5142361/.

Dougherty, Elizabeth. “What Are Thoughts Made of?” Ask An Engineer, MIT School of Engineering, 26 Apr. 2011, engineering.mit.edu/engage/ask-an-engineer/what-are-thoughts-made-of/.

Fernyhough, Charles. The Voices Within: The History and Science of How We Talk to Ourselves. Profile Books, 2017.

“Hebbian Theory.” Wikipedia, Wikimedia Foundation, 15 Apr. 2020, en.wikipedia.org/wiki/Hebbian_theory.

Lorentz, Madeline M. “Stress and Psychoneuroimmunology Revisited: Using Mind-Body Interventions to Reduce Stress.” Https://Www.mm3admin.Co.za/Documents/Docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00025132.Pdf, Alternative Journal of Nursing, July 2006.

Murray, Greg, et al. “The Mind-Body Relationship in Psychotherapy: Grounded Cognition as an Explanatory Framework.” Frontiers, Frontiers in Psychology, 1 May 2014, www.frontiersin.org/articles/10.3389/fpsyg.2014.00472/full.

Nathan, Howard J, et al. “Randomized Trial of the Effect of Mindfulness-Based Stress Reduction on Pain-Related Disability, Pain Intensity, Health-Related Quality of Life, and A1C in Patients With Painful Diabetic Peripheral Neuropathy.” Clinical Diabetes : a Publication of the American Diabetes Association, American Diabetes Association, Dec. 2017, www.ncbi.nlm.nih.gov/pmc/articles/PMC5734176/.

Satsangi, Shipra, et al. Thought Consciousness : A Panacea For All Ills And Evils Of Mind. Dayalbagh Educational Institute, www.consciousness.arizona.edu/documents/TSC2018AbstractBookfinal3.pdf.

Six-factor Model of Psychological Well-being. (2020, April 14). Retrieved October 07, 2020, from https://en.wikipedia.org/wiki/Six-factor_Model_of_Psychological_Well-being

Research: Just Do It! Find Your Voice!

Research: Just Do It! Find Your Voice!

From 1970 until I retired in 1999 I taught a semester course twice a year titled, "Writing a Research Paper" at Roosevelt High School in Kent, Ohio. I took students on field trips to Kent State University library. In the 1980's Dialog offered a low priced dial up data base called Knowledge Index. I offered database Knowledge Index searches to my research paper students. My students wrote two research papers.

Since elementary school, I have researched topics of interest, collected sources, made notes and written short essays. As a history and English major at Kent State University from 1962 to 1966 and from 1966 to 1968 in graduate school I wrote research papers. I researched my challenged high school students from 1968 through 1999. I researched my challenged students when I went back to teaching in 2006. I researched my challenged students when I started my own school, Marketplace Mission Learning Center, in 2011 through 2018. But a bigger research challenge came when a routine endoscopy led to a biopsy which revealed Amyloidosis AL. On June 18, 2018 I received the news in a phone call. On June 25th I met my GI doctor, who had never seen amyloidosis before, to receive the official diagnosis. From June 18th to June 25th I had researched the disease and researched possible treatment centers. Boston's Brigham & Women's Hospital, the second largest teaching hospital of Harvard Medical School, and the Mayo Clinics in Rochester, MN, and Phoenix and Jacksonville offered doctors with the most experience treating this rare, 9 cases per million, and incurable disease. On June 26th, one day after receiving the official diagnosis, I called the Mayo Clinic in Jacksonville, a six hour drive from my home on Marco Island, and asked for an appointment (you do not need a doctor's referral to ask for an appointment at the Mayo Clinics).

I began my treatment journey at the Jacksonville Mayo Clinic with Dr. Taimur Sher on July 30, 2018. Go to https://www.mayoclinic.org/biographies/sher-taimur-m-b-b-s-m-d/bio-20055521 to read Dr. Sher's Mayo Clinic biography. Scroll down to "Publication" and click "See my publications." Dr. Sher has co authored 71 scholarly articles. What does that mean? Dr. Sher reads as well as writes scholarly articles. Every doctor at the Mayo Clinics has a biography page. Every doctor that sees patients at the Mayo Clinics has a "Request an appointment" button on their biography page. Do your research.

Amyloidosis Al and 16 weekly chemo treatments of dexamethasone and Velcade from September 2018 through January 2019 and chemo caused peripheral neuropathy from December of 2018 to today have focused my mind. I decided I had things to say, and I better get started. To reinforce the need to say things I need to say, Dr. Sher at my September 2, 2020 appointment told me he was happy to see me doing so well because fifty percent of patients with amyloidosis are dead in one year, and I am still here after first seeing him first July 30, 2018. So I present the following books available on Amazon.

Freedom and Existence: A Collection of Essays: Drugs, Age of Anxiety, Obesity and Food (January 7, 2020 and 99 pages and 1075 KB)

My Journey From Amyloidosis AL to Chemo to Peripheral Neuropathy and How I Used Mindfulness Learning Tools to Improve My Quality of Life (February 17, 2020 and 118 pages and 317 KB )

Mindfulness vs Disease and Debilitating Symptoms Such As Pain, Fatigue and Loss of Coordination (September 23, 2020 and 153 pages and 3359 KB)


Do you have things to say? Yes! Yes you do. Start a journal. Say it in words. Say it in pictures. Say it in music. Just say it. You have a voice.



Do not go gentle into that good night

Dylan Thomas (1914-1953)


Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.