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.