My ALS Reversal
Written by Kim N Cherry, January, 2017
< Kim on the golf course, Yuma, AZ, January, 2017
Born December 27, 1947, I spent my early years around farming and construction.
I married my sweetheart, Kay Givens, the “We” component of this narrative, in 1969. We worked together the next four years to get me through college. I graduated from BYU with an engineering degree in 1973.
After a four-year stint with an engineering firm in the design and construction of the Alaska Pipeline, in Southern California, then Alaska, we returned to our native Idaho and eventually built our home in Star, just west of Boise.
I am what would be considered a moderately successful entrepreneur, starting my first business in 1979. With that have come the associated work pressures and long hours.
I began having serious health issues in 2010, 23 years into my third business, Extendo Bed Co., started in 1987. Extendo Bed is a roll-out tray assembly I invented, for access to tools and equipment in the back of work and emergency response vehicles. (www.extendobed.com) I had also started another small business producing and marketing another invention, a baseball pitching and training machine, the Sling Pitcher.
With 18 employees, and a national clientele, my work day often started as early as 5 a.m. and frequently went well into the evenings with the associated mental pressures considerable. A typical work week was 60 to 70 hours with five or six hours of intermittent sleep each night. In addition, I did a significant amount of service work in my church.
We have always eaten healthily, and I have never used alcohol or tobacco. I kept my weight in check, and installed a swim-in-place exercise pool in our home in 2006. Thus, swimming became my primary form of exercise, supplemented with rounds of golf as time permitted.
In the early months of 2010, I began noticing breathing issues with my regular swimming sessions. I was pushing myself to stay in shape, and yet my breathing during these swims was becoming increasingly more labored. By late summer and early fall of that year, I struggled to swim more than just a minute or two.
Over the previous two or three years, I had developed what I since have learned is “drop foot”. When I walked, my feet slapped on the floor. My toes would catch as my right foot would drag, and I began tripping frequently. This led to periodic falls, especially when walking on uneven ground. While playing a round of golf in the summer of 2009, I fell walking down a steep trail, tearing the cartilage in my left knee that required orthoscopic surgery.
I likewise noticed a significant loss of balance. I could no longer stand in one position without constantly shifting my feet.
We attended a business trade show in the fall of 2010 in Coeur D’Alene, a beautiful mountain resort area in northern Idaho where the air is thin and cold. I struggled to perform simple tasks involved with setting up our display booth. While walking across a carpeted floor early one morning, I tripped, resulting in my first embarrassing fall, though I escaped serious injury.
I also began having significant issues with my breathing at night, especially when first lying down in bed. All this did not make sense.
Many years before, I was diagnosed with a heart condition known as Right Bundle Branch Block. It is an electrical issue said to have little impact on life expectancy. Thus, it had never really concerned me. Now with my current struggles, I decided to see my cardiologist.
The tests indicated I had a condition known as Mitral Valve Prolapse, where the mitral valve in my heart was not closing properly, allowing blood to leak back into my lungs. I was told the condition was not serious, but that I should eventually have open heart surgery to repair the valve. To me, the condition was very serious, since I felt oxygen deprived much of the time. My ability to simply lie down in bed was getting progressively worse, as I was now working my way down with a stack of pillows, over 15 or 20 minutes.
We flew to Vanderbilt Medical Center in Nashville, Tennessee in early December, 2010 for open heart surgery. Coming out of the anesthesia was a terrifying experience, and should have been a telltale sign that other factors were at play. I fought for several hours to regain full consciousness. I was only partially coherent, but felt I was suffocating. I simply could not breathe. All the monitors said that my blood was properly oxygenated, but my brain did not get the message. I kept asking, even begging for air. The nurses kept telling me to relax. Though I don’t know that I was ever in imminent danger of dying, my attending wife and brother were very concerned.
I did make it through the recovery and was anxious to get back to work. I felt better right after the surgery, and was back in my office a week later.
The doctor had said a complete recovery should take only two or three months. However, three-months post-surgery, I still could not submerge myself in water without feeling severe restrictions to my breathing. Any swimming was simply out of the question.
Traveling across Wyoming late at night while returning from a trade show in late March, three and a half months after the surgery, we ran out of gas (after passing three closed stations). Temperatures were near freezing with a strong wind. We were only two miles from the next gas station we could see lighted in the distance, so I decided to walk.
The walk was a slight uphill climb into the wind. After only a few hundred yards, I knew I had made a serious mistake. I was struggling just to stay upright and put one foot in front of the other. Somehow in the dark, a young couple saw my plight and stopped to help. They took me to the gas station and then back to our suburban. They were my angels that night.
From that ordeal, I knew that something was not right. The doctors ran more tests, only to tell me that my heart was fine. I was referred to a pulmonology clinic in Boise but the appointment was several weeks out.
I flew back to Vanderbilt and met with my cardiac surgeon. After a preliminary exam, he too told me my heart was fine, and that my problem was simply that I was in terrible physical shape, based on his observation of a lack of blood flow to my right leg. I was highly offended. I simply found it impossible to swim or to do other exercises. Even though he is not a neurologist, I believe he should have seen and recognized the signs of ALS. He referred me to a pulmonologist while at Vanderbilt. After some pulmonary function tests, I was told I had constrictive airways, much like emphysema, but that this condition could be treated with inhalers.
Returning to Idaho, and undergoing further pulmonary tests, I was told I had asthma and possibly emphysema. I was put on oxygen and wore a liquid oxygen pack for several weeks. I was also given a strong Prednisone regimen over a four or five-day period, and prescribed an inhaler.
I never felt benefits from the inhaler, but the Prednisone seemed to have a very positive effect, and I started feeling immensely better. In late June, I was told I no longer needed the oxygen.
The positive feelings did not last. It was back to the pulmonologist, and another round of Prednisone, which had only a moderate effect the second time. A third dosage late summer was of no benefit. My strength and energy level were rapidly deteriorating.
I had become much more aware of weakness in my right leg. For the first time, I realized my right calf had atrophied significantly.
I made an appointment with a general practitioner, who referred me to a Boise neurologist.
In late October, after several other tests, the neurologist ordered a swallow study, which showed excessive amounts of liquid flowing into my lungs when drinking light fluids. She then ordered an EMG (Electromyography) and an NCS (Nerve Conduction Study), the two most commonly used test to diagnose ALS.
On the 22nd of November, 2011, the day after our 42nd wedding anniversary, we again met with the neurologist. She reviewed all her notes, reports, and test results; the atrophy in my right calf, the severe weakness in my feet and ankles and some weakness in my hands, the fasciculation in my feet and legs, my thickening speech, my swallowing issues, my halted walk and drop foot, and the results from the EMG and NCS. In the end, she told us that I did indeed have ALS, both lower neuron (limb onset) and upper neuron, (bulbar).
She expressed her sincere condolences, but told us there were no treatments for the disease, and that it was fatal. She stated I was not a candidate for any experimental medical treatments or procedures, and that there was nothing more she could do for me. She discouraged me from seeking alternative treatments. She did say that when the time came for hospice care, she could help. She mentioned Riluzole, the only FDA approved drug for ALS, that could possibly slow progression, as something we should consider.
She stated we were welcome to seek a second opinion, but that she had sent all my test results to a mentor at the University of Michigan in Ann Arbor, where she had completed a neuromuscular fellowship, and to another renowned specialist from the University of Utah where she had completed her residency. Both concurred with her diagnosis.
When I asked her how much time she thought I had, she would only say that the normal life expectancy for ALS is 3 to 5 years from the diagnosis. I am sure she was trying to soften the blow by being so vague. When we left her office, I was not asked to schedule a follow-up visit.
I have sometimes thought what it would be like to meet with a doctor and be told that I had a fatal disease with a limited time to live. We see it in movies, and read it in books. It is difficult to express the emotions and feelings that come with the actual experience. It was not just the finality of my forthcoming demise, but also having a perception of the horrific death associated with ALS. Even though the diagnosis was not a surprise, as I had suspected and feared such for several months, the finality of it was a shock. We could not imagine there were no options, no treatments, and most of all, no hope.
We all have significant dates fixed in our minds. They are frequently associated with tragedies. Some of mine are the day President Kennedy was shot, the day the space shuttle Challenger exploded, and the day terrorist flew planes into the World Trade Center. November 22, 2011 was another such day in my life. As Kay and I sat there in stunned silence, we didn’t cry. We didn’t say much, except to ask a few simple questions. The world seemed to be spinning out of control. As we walked down the hallway from the doctor’s office, we felt we were very much in uncharted waters.
We decided for the time being that we would keep our “little secret” to ourselves until we could figure some things out. We simply did not know how to tell our family and loved ones, our friends, or our employees.
We had a follow-up visit with our general practitioner a few days later, and hoped he would give us some ideas of things we could do. Our meeting with him was much like our meeting with the neurologist. When we arrived, he was already familiar with the diagnosis. He too, was very kind. He explained what we could expect concerning the progression of the disease. Nothing he said gave us the hope we yearned for. He likewise told us that there was no treatment and no cure, and that I should start taking Riluzole.
Since our last meeting with the neurologist, we had done some research on Riluzole, also called Rilutek. The clinical trials have shown the drug adds two or three months of life expectance for “some” ALS patients. It is expensive with significant side effects, one being decreased breathing function, already a major issue for me. It sounded like a way to keep the prisoner alive to simply administer more torture.
I was struggling to swallow liquids, choking on small sips of water, and even on my own saliva. Reducing my fluid intake for fear of choking led to dehydration issues, and severe muscle cramping, sometimes resulting in as many as four “Charlie horses” in my legs and feet at one time. The GP suggested I start drinking carbonated water to stimulate my swallowing mechanism, which I did with very positive results. It was probably the best advice I received from any of my traditional doctors.
I had many things still going on in my life. My business was of paramount concern. Though we had already concluded we would have to find a buyer, I needed a feel for how much time I could expect to function. The GP stated I should have about a year to live, but two at the very best. He too, cautioned us against seeking any alternative therapies, saying they would only steal our money and give us “false hope”. He recommended we make an appointment with a doctor that ran an ALS clinic in Boise. We made the appointment for the middle of January.
I had endured months of x-rays, scans, and tests. During the nights, I worried about my family, about finding a buyer for my business. I often struggled emotionally, just to get through the day. To make the transition to a positive mind set with a strong will to fight and win is not an easy transition and simply takes some time.
Two weeks after the diagnosis, we gave the news to our family, friends, and our employees. It was as if a great burden was being lifted from our shoulders. We were overwhelmed with the love and support that seemed to pour forth from everyone around us. It was like opening the windows and letting in the sun. The cards, the visits, and the prayers offered in our behalf were phenomenal, and brought tears to our eyes. We discovered we were not in this battle alone.
Once we released the news of the ALS diagnosis, significant things started happening. The first involves our religious faith. We are active members of the LDS Church, also known as Mormons. We believe God can play an active part in our lives if we let Him. Our church practices “priesthood blessings”, wherein those that bear priesthood authority, which we believe is power to act for God here on earth to serve His children, can pronounce blessings on those who are sick or have other special needs. Most worthy male members, those that live the laws and standards of the Church, possess this priesthood authority, which they use to serve their families and others.
Two close friends, also local church leaders in our area, offered to come to our home and pronounce priesthood blessings on both myself and my wife. I was told in my blessing, among other things, that I had a work yet to do on this earth, and that if my faith was strong, I would live to accomplish what God had in mind for me, that we would see miracles. Kay’s blessing included a promise that through her study, she would be led to find answers and solutions to the health crisis that had entered our lives.
After these blessings, I was asked to prepare a 12-minute talk to be given 10 weeks later, at an upcoming church conference in mid-February, attended by several hundred church members from our area. At the time, I was rapidly losing my ability to speak, and carried a hidden fear that I would even be able to talk or walk by then, let alone stand and address a large crowd.
This assignment proved to be a great blessing at this stage of my battle. I not only felt strength and courage from the blessings, but I now had a specific goal to reach. At times during those first few weeks after the diagnosis, I felt as if I were sliding down a steep, snowy incline with no way to stop. This challenge seemed like a branch extending through the snowy ground that I could grasp hold of. I kept saying to myself, “I can make it to February 12th, then we will see”.
Another blessing that came was a flood of ideas, and exposures to alternative therapies from several sources. We searched the internet to check out ideas we were hearing and for anything else we thought could be of value.
I’ve a niece whose husband, Steve, had been in a serious auto accident some 15 years earlier, leaving him in a coma for several weeks, and resulting in significant brain damage. When she heard of our plight, she called. “You’ve got to come see our doctor,” she told us. He had worked with Steve and helped him. She believed he could help us too. We drove to Heber City, Utah on December 5th, to meet with him the next day.
I did not know until we arrived at Doctor Jared Nielsen’s office that he was a chiropractic physician, not a neurologist. I had never been a strong believer in the effectiveness of chiropractic medicine, but I liked Dr. Nielsen immediately. He was optimistic and positive. He was the first health professional that seemed to believe something could be done to stop or reverse the progression of ALS.
He determined I had gluten sensitivity, mercury poisoning, and fungus issues. He recommended a protocol that included a gluten-free diet, and supplements to address these issues. Though I was very suspect, especially since I have never had any of the typical symptoms of gluten sensitivity, Kay was not, and if I did not make the effort, I did not want her to be able to say after my demise, “He just wouldn’t try.”
My tongue seemed thick and heavy and my words were beginning to slur. The glands on the sides of my throat were swollen. Dr. Nielsen photographed the back of my throat, and recorded my voice on my iPhone, telling us we would see improvement on our next visit. We left his clinic with a pile of supplements and vitamins that he said would start addressing the issues of toxicity and help my voice. But most importantly, we left with a huge infusion of hope and a scheduled follow-up visit one month later.
We returned to Dr. Nielsen’s office in early January. He stated he could see a substantial improvement in my condition. Though I was still skeptical, I wanted to believe him. He took photos of my throat again, and recorded my voice. Both really did seem to show significant improvement. We left with a renewed commitment to stay the course.
Shortly after our return from Heber City, we read something about Human Growth Hormone as being of value for ALS patients. I made another appointment with my GP, with the intent of reviewing this option and possibly getting a prescription. He took about 20 seconds to look on his computer, then told me there was no value in the drug. I was very disappointed, not so much because of his rejection of the potential value of HGH, but because of his attitude that there was absolutely nothing I could do that could change the outcome of my diagnosis, and that I was foolish for thinking otherwise. On sharing with him the photos of my throat and the recordings of my voice, his only comment was that my voice was only louder. He did not comment on the obvious improvement of the swollen glands in my throat. We had a heated discussion, in which I told him that I was going to beat this disease, and I wanted no association with anyone, including him, that did not believe I could succeed. I immediately left with some harsh words, telling him I would not be back.
Though we had completely committed to this new approach, December of 2011 seemed to be a continued down-hill slide. Two of the longest nights of my life came in the second week of January, when I simply could not get enough air to sleep, or even lie down. I spent two consecutive nights sitting on a sofa, gasping for air, and wondering how I could ever make it until morning. For some reason, it was easier during the days.
Leading up to my diagnosis, as my breathing issues had continued to magnify, my doctors had recommended a base line sleep study, done early December, 2011, followed by a C-PAP titration study four weeks later. Afterwards, I had been prescribed an oxygen concentrator and a Bi-PAP machine and started using these that second week in January, right after those two horrid nights. I started sleeping better, and stayed in my bed the full night. However, I found the Bi-PAP to be intolerable, and stopped using it the latter part of January. I continued using the oxygen machine at home and at night, using a cannula, light tubing that feeds the oxygen directly into the nostrils.
Though I had already had the confrontation with my GP, we decided to keep the appointment with the doctor over the ALS Clinic January 16, 2012. He was also kind and considerate, but likewise gave us no hope. He told us I should have a feeding tube installed immediately, before further atrophy made the procedure undoable. He stated that I should be on full disability, and told us he would sign the necessary papers before we left his office. I failed to tell him that I was still working 50 hour weeks, and intended to continue doing so.
He suggested we start attending his local ALS support clinic, held twice a month, where specialists would be available to help us “manage” the disease. He likewise discouraged us from seeking any alternative therapies.
We walked out of his office and stopped at the reception desk. I picked up the pen to sign up for the clinic, but simply could not put my name down. I refused to be a part of it. I needed no one to simply tell me how fast I was dying. I wanted people to affirm how well I was living.
By the time of this visit, we had made a firm commitment that we simply would not accept the death sentence so easily delivered by our well-meaning doctors. I am an engineer, inventor, and entrepreneur. I have spent most of my adult life solving problems and challenges. I realized this disease should be treated no differently. I am sorry to admit it was not an easy sell, even to myself. I was discouraged many times during those first several weeks.
We struggled through the January weather. Getting from a warm restaurant back to the handicap parking required several minutes to calm an ensuing coughing spell. I also found that I had an extremely high sensitivity to perfumes, smoke, deodorants, and any cool air flows.
A cousin of Kay’s had given us a book written by a man afflicted with ALS. It was a road map for living with ALS, showing uses of all kinds of devices and aids to help manage continued function loss; wheel chairs, body lifts, toilet aids, braces, etc. As I read the book, replete with photos and explanations, my anger rose. I finally picked it up, took it in the kitchen and slammed it down on the counter in front of Kay. “I am simply not going there!” I exclaimed. “I am not going to use a cane, a walker, a powered chair, or any of their other devices!”
Kay points to this outburst as a major turning point in my resolve. I was telling my body what it was going to do, and it damn well better listen.
The early part of February seems to be the point I felt the digression was slowing. Though it still required an extensive effort to lay down in bed, I started sleeping better. My ability to climb stairs, or exert energy was still severely limited. The 14 steps to the upstairs offices at our business required a mid-climb breather, and another at the top landing before walking the last 50 feet to my office.
The talk I was asked to give in February worked out just fine. We arrived at the building an hour early to give my lungs a chance to recoup from the nasty outside weather, and I stood and talked for the time allotted me. If I were to put a date on an actual turn-around point in our battle against the monster, ALS, this would have to be it. My confidence was surging. It was time now to move on to the next goal.
We had a trade show in Phoenix, AZ, mid-March. Walking was still a major issue. I arranged for a motorized scooter, as our hotel was two blocks from the convention center. I used the scooter throughout the four-day convention. Kay and I were able to assemble the show display by ourselves.
After the show, my brother joined me in Phoenix and we played 45 holes of golf over the next three days. The last time I had played was mid-December, three months earlier in Southern California and I had struggled, fearing it would be my last time. We still used a golf cart and kept walking to a minimum, but the boost to my morale was immense. It was fantastic therapy to be playing again. It left me tired, but not exhausted. Golf has continued to be a primary “therapy” ever since.
Returning home, I felt renewed hope, but still struggled with the stairs to my office and any physical exertion. Kay’s arm across my chest at night was more pressure than I could stand. However, I honestly believed not only was the progression stopping, but I was seeing sustained improvement.
For the past 35 years, my weight had ranged from 210 to 225 pounds. It started declining shortly before my heart surgery, and continued to a low of 177 pounds in early March of 2012. It was now starting a slow climb back up.
Our research consistently stressed the importance of oxygen as a key to good health. Maximizing oxygen in our bodies increases energy levels and provides more efficiency in eliminating waste and fighting disease. (Search hypoxia vs hyperoxia.)
As we continued our search for other alternatives, we came across the use of ozone therapy, augmented by hyperbaric use. Though the information we found was limited, it made sense. Ozone is commonly used for water treatments, food purification, and as a sterilant, and for medical treatments in several European countries, but is restricted for medical use in the United States.
Ozone is oxygen with a third molecule, or O3. It is unstable and highly reactive. The concept behind the medical use of ozone therapy is that when ozone is injected into the body or blood stream, the third oxygen molecule acts as a scavenger of other free radicals, to render them harmless, thereby protecting healthy cells from damage.
The increased pressure from the hyperbaric chamber helps oxygenate the body and increases the benefits of ozone, supplements, vitamins, and nutrients from a healthy diet.
Hyperbaric chambers are used to treatment deep sea divers with decompression sickness, created by surfacing too quickly from diving depths. Thus, the term “dive” is used to represent one session in a chamber. These chambers are hard-shelled, and can pressure up to several atmospheres, (one atmosphere being 14.7 psi at sea level). They range from one man to huge chambers that seat multiple patients. Soft-shell chambers made of vinyl materials generally operate at 4 psi. Soft chambers are collapsible, and much more affordable.
We studied the writings of Dr. Paul Harch, a prominent hyperbaric doctor in New Orleans. Though he has never had success treating ALS with hyperbaric treatments alone, he believes the lower pressures of the soft-shell chambers perform better for neurological conditions, especially with the addition of supplemental oxygen breathed through a face mask. He has had significant success treating brain injuries and other neurological issues.
We found and researched a clinic near Nashville, run by two herbalists that were also using ozone and hyperbarics. We had another trade show to do in Indianapolis, Indiana in April and arranged for a 10 day visit to the clinic on our way.
We arrived at the clinic and started a 10-day treatment program on the 8th of April, 2012. The first several times I laid in the chamber, I did not want to get out. I felt it was the first time in several months I was getting adequate oxygen.
Ozone is created by running oxygen from a concentrator or tank, through an ozone generator. I was treated using four procedures. First was a breathing treatment with ozone passing through an olive oil bubbler; second was a short ear treatment; third was a rectal insufflation treatment (not as bad as it sounds); and fourth, an ozone IV with ozonated sodium chloride solution. I learned how to access veins in my arms to do my own IVs.
I also took two one-hour hyperbaric dives each day. Other therapies included various herbal concoctions, as well as music and song, laughter, emotional and spiritual lifts, jokes, and fun, which were perhaps as valuable as the physical components.
Upon leaving the clinic, we took with us all the supplies we would need to continue our own treatment program. We felt the doctors were fair in their charges, but the key is that we were now completely capable of continuing the therapies at any pace we chose with little additional expense. The “docs” helped us locate sources for the supplies we would need. We ordered our own soft shelled hyperbaric chamber to be shipped to our home.
We then traveled on to Indianapolis for our trade show. We did not arrange for a scooter this time. Though I was substantially limited, I managed quite well, and walked the distances necessary for the show.
I continued doing the three ozone therapies twice each day upon leaving the clinic, even while travelling, and the ozone IVs every other day.
On returning home, we added a small treatment room in our garage, and had the soft shell hyperbaric chamber assembled and working by the middle of May. I again did two dives a day, varying from 4 to 9 psi. With the other therapies, I was spending as much as 5 to 6 hours a day doing the treatments. I was committed.
The cramping issues I was having late 2011 had diminished significantly when I began drinking better with carbonated water. With the ozone and hyperbaric treatments, they essentially disappeared.
Medicinal use of ozone is controversial in the US and is restricted. Some of the things we have done may seem radical to some, or even fanatical. The results we have achieved are self-evident. Whether radical or not, we believe they have, and continue to contribute to my success.
In the early spring of 2012, I had found an on-line ALS support group, the ALS Forum, one of the largest such in the country. I found many of the postings depressing, with heart-wrenching stories, mostly from caregivers. I decided it was not for me.
As my condition continued to improve into the summer of 2012, I went to the site again and signed up. My intent was to offer hope and encouragement to other PALS. My first two postings in early August simply stated we were doing natural therapies that were helping us. I said I was playing golf again, and that I fully expected to beat ALS. I encouraged others to refuse to accept their death sentences and to find ways to win their own battles. I offered my help to any PALS that wished to contact me. The latter part of August, I received an email from the forum, stating that I had been banned from the site “for life”. No reason or explanation was given, nor did they respond to my requests for such.
Our business sale closed on the first day of June, 2012, and we decided to find a way to get to lower elevation and warmer weather for the next winter. With the warming Idaho weather, aided by our protocol, I was continuing to breathe much better. But we also knew I would struggle again when the cold Idaho winter returned.
We found a used 40’ Class “A” Motor Home that would allow use of the hyperbaric chamber. The RV idea was my wife’s. Though I was concerned that my leg strength would be adequate to safely operate the heavy RV, I did not want to let Kay know my fears.
Though my improvements were steady, they were slow. Occasionally I would have a bad day, but I was determined the next day would be better. Most of the time, it was.
We continued experimenting with supplements. My confidence continued to increase that I could indeed, handle the big RV. When it came time to load to start our new “adventure”, however, I discovered I simply did not have the strength to load the bottom RV storage compartments. My sons had to do the loading.
We agreed to attend a trade show with the new owners of Extendo Bed Company, being held in Midland, Texas in October. We also agreed, with my improved health, I would continue working as a sales rep in Southern Texas. We headed south in the RV on October 10th, 2012.
My health improvement continued through the winter of 2012 and spring of 2013. We ended up in Brownsville, Texas as the New Year started. We were following the sun, and it was the warmest and lowest elevation we could find.
Brownsville has great avocados, and we started and continue to eat them daily, which is possibly our number one nutritional secret. Without the pressure of running a business, I started sleeping better than I had in years.
We decided to move to the Houston area the end of February, to do some promotional work on Sling Pitcher. We called Dr. Paul Harch, the hyperbaric doctor in New Orleans, Louisiana, who had mentored our alternative therapy doctors in Tennessee. He was aware of our battle with ALS, and had been following our story. We asked if he would like to visit with us if we came to New Orleans. He scheduled a two-hour block on February 22.
Our visit with Dr. Harch was an inspirational experience. He spent time reviewing medical records I had provided, and did a series of his own tests. He was truly impressed with the progress I had made. As to the reasons for my recovery, he said he did not fully understand. His expertise is in hyperbarics, not neurology. He confirmed he has never had success treating ALS with hyperbarics. He does not use ozone in his practice, and could not understand how the ozone therapy could be helping, since ozone is also a free radical. However, he said he simply could not argue with the results. He applauded our efforts, and encouraged us to continue our battle. Our meeting went a full four hours.
As spring continued, we started noticing other significant signs of improvement. Washing the windshield of the RV, a challenge when we first started south, was becoming easier. In April, I spent two hours working alone off an eight-foot ladder setting up a 40-foot batting cage.
During early 2013, I began having more issues with my IV treatments. I had done some 120 IVs in my arms, hands, and even my feet. Early on, it sometimes required two or three tries to get a vein that would flow. Now, it was sometimes taking as many as six penetrations to get the job done. With some 400 to 500 penetrations, my veins were a mess. Often, my arms or hands would be sore for days after a treatment. My solution was to reduce the frequency of the IVs, allowing more time for my veins to heal. I feared this was detrimental to my continued recovery.
While returning to Idaho in May 2013, we visited a good friend, Jan, a retired nurse in Salt Lake City. We asked if she would help me do an IV. She too had difficulty accessing a vein. She was appalled at what I had been doing all this time. She could hardly believe I had never had infection issues, a major problem with repetitive IVs. We realized such is the power and nature of ozone. Jan suggested I have an IV Port surgically implanted.
Soon after we arrived home, I found a local surgeon. When he learned of my winning fight with ALS, the port was placed within a week
The ability to do my own IVs easily and painlessly, as often as I deem necessary, has been a Godsend. Though I have invested some money for the equipment and supplies, it is much less than I would have thought. My insurance covers almost nothing, but fortunately, my cost for all my treatments is somewhere around $15 per week, most of that being for the IVs, and I am constantly finding new material sources.
Arriving back in Idaho in the Spring of 2013, I was excited about the progress we had made, and contacted my neurologist for a follow-up visit, as I was confident I had reversed my symptoms. I saw her at the end of May. She performed another examination, checking strength in my limbs, watching for fasciculation, particularly in my extremities and tongue, listening to my voice, observing my gait, and reviewing tests from 2011. She then told me she could see no improvement. I was shocked! I had easily walked up two flights of stairs to her office, when I had used the elevator my last visit, 18 months earlier. I told her I wanted to repeat the EMG and NCS, and that I knew I had not only stopped the progression of the disease, but had reversed it. She agreed to repeat the tests but could not schedule the equipment until the end of September.
The EMG/NCS tests were repeated September 23, 2013. After the tests were completed, she said the disease had progressed substantially, that additional muscle groups were now affected, and that the fatal prognosis was unchanged.
In response to my questions as to why I felt so much better and could now do things I could only imagine two years earlier, such as walking 18 holes of golf, she only said she did not know. She was going to a major conference in two months and would there ask another world-renowned ALS specialist about my case. I did not hear from her.
This experience is a prime example of the negative power doctors too often assert on their patients. She sucked the wind from my sails. I was surprised at the depression I felt by her report. I knew I was better, and yet I felt terrible. My depression lasted for a couple days until I got a swift kick in the pants from a call to our Tennessee docs that got me back on track. The power of the mind can and will heal, but it more often can and does also kill.
During the summer of 2011, I had three pulmonary function test performed. The first recorded my lung capacity at 64% in June, with the third test showing a decline to 47% by October. I was certain, now two years later, that my lung functions had greatly improved. Because of my keen disappointment with the neurological reports, I contacted my pulmonologist and scheduled another lung function test. The same tech that had done the previous tests, performed the procedure. She was very surprised when the test results showed a lung capacity now at 58%, up from what she thought was a low of 47%. I have no doubt my lung functions were much lower than 47% in January, 2012.
During the summer of 2013, we published our website, www.alswinners.com. It tells our story and gives access to all we have learned and believe concerning ALS. Kay has been the architect and continues to be the driving force behind this work. We add an update monthly. Our only desire is to reach and help others fighting an ALS diagnosis, hoping that our experience can benefit them. If we can give them nothing else, we can give them hope. That is the one thing my doctors refused to give me. That is where true healing must start. We had to find ours on our own.
We returned to Port Isabel, Texas, near Brownsville, for the winter of 2013/2014, reserving a space for our RV at a resort featuring an indoor lap pool. I started swimming regularly again, and during the early months of 2014, recorded my first mile swim since 2010. It was done at a slow pace, but it was steady, as was my continued progress.
We continued seeing improvement through the summer back in Idaho, and then returned to Brownsville for the winter of 2014/2015. We did not have access to a pool that winter, but we continued to stay active, biking, golfing, and working the Sling Pitcher. We also decided to leave our hyperbaric chamber in Idaho for two reasons. First, we questioned if the chamber was still critical to my wellbeing, as the diet and supplements were now well engrained. The second reason was simply the inconvenience of the chamber set-up in our small winter home. Perhaps I was getting a bit lackadaisical. We continued only the ozone therapies for the winter, but also cut back on them to once or twice a week.
I did not feel any significant decline with the reduced therapies, though we strictly maintained the diets and supplements.
Back in Idaho in the Spring of 2015, I took a nasty fall getting to the bathroom in the night, breaking some ribs. I did another series of hyperbaric dives to facilitate the healing process, which took several weeks.
I saw my neurologist again in April 2015 for some insurance needs, as I was selling a life insurance policy on a viatical settlement. At first, she refused to see me, since our last meeting 18 months previous had not gone well, but relented after much persuasion. I apologize that I had been insensitive to her feelings in our last meeting, and in my story on our website, which I was surprised she had read. She really is a caring person and wishes to help those fighting this monster, ALS. She feels I had not fairly represented her work or efforts to help me.
She was surprised at my condition. After reviewing my medical records again, she stated there was a possibility I had some variant of Kennedy’s Disease, but the evidence was just too compelling that it was indeed ALS. Again, she could simply not explain my current condition. She said “Maybe you will be one of the very, very few” to survive ALS, and that I should continue whatever it was I was doing. However, in her medical summary of our visit, she was critical that I would not follow the standard protocol for ALS care. She did mention in her report that I seemed to be doing very well following a holistic approach to the disease. (The Viatical Settlement Company did complete the purchase of a term life insurance policy, converted to a Universal Life Policy that we had never intended to keep beyond the term life, resulting in a very good financial investment for me.)
We again left the chamber home as we headed south in the fall of 2015. My progress continued, but perhaps at a slower rate. I noticed my weight beginning to slide just a bit, as I was struggling to stay in the 180s.
The winter of 2015/2016 started out well. We moved to Yuma, Arizona, to be closer to Kay’s aging mother who wintered in Quartzsite, just an hour to the north. We were again enjoying the warm weather, playing some golf, and attending to a little business as usual. I was swimming regularly, which I had not been able to do the previous winter in Brownsville.
Then we were blindsided by the suicide death of our 38-year-old daughter in February 2016. After a two-week trip home, taking care of our responsibilities as best we could, we returned to Yuma. There is little doubt this experience is in all respects, possibly the toughest of my life, even including ALS. I don't feel I am responsible for that heart-breaking incident, but there is little doubt in my mind that had we been home, and had I been doing a better job as her father, things would have been different. Things should have been different.
We returned to Idaho just two weeks later to be with Kay's ailing mom, whom we had taken to Idaho with us for our daughter’s funeral. She had taken a turn for the worse and passed just a few days after our return.
I had also done some remodeling work on our home in Star, and had not properly protect myself from exposure to a lot of dust and toxic fumes. During this time, especially with my sleep habits in the tank again, I noticed my weight and my energy level dropping, breathing issues resurfacing, and no doubt, a decline in my morale. I was tipping the scales at an all-time low of 175 pounds.
Once we realized what was happening, we recommitted to our total program. We got a handle on the emotional issues. We stepped up the detoxing therapies of ozone and commenced regular use of the hyperbaric chamber, taking it with us in our motor home as we headed south in the fall of 2016. Over the next few months, my weight improved, and I have been able to generally maintain 190# to 195#.
We have learned that this is an up and down battle. Set-backs are inevitable, exemplified by our experience of losing our daughter. The emotional setbacks are perhaps as critical, if not more so than the physical setbacks. Family and relationship problems, financial issues, and business challenges can be as huge as a fall resulting in a concussion or a broken bone. But these set-backs must be viewed as temporary lulls and not a turning of the tide of battle. It is as critical that we stay clear as possible from the emotional setbacks as it is that we use extreme caution to prevent the physical interruptions.
We have contact periodically with various institutions and ALS groups concerning our ALS experience. Most simply ignore our claims, even with credible medical evidence. Since I am not following the standard doom and gloom path of ALS, they really have little interest in pursuing my story.
One exception is Dr. Richard Bedlack, head of the Duke University ALS Clinic in North Carolina. He had heard our story and had been to our website when he called in January, 2016. We discussed my case for an hour. He asked that I send my medical records. After reviewing them, visiting with my neurologist, and reviewing functionality tests, he responded that I was indeed an ALS reversal, the 24th such case he has documented in the past 16 years. As of this writing, they have now confirmed a total of at least 34 such reversals.
Doctor Bedlack has expressed to me his desire to eventually do some type of controlled study of the protocol we have used, in hopes that it can be replicated in other PALS. I sincerely hope this can happen, though I have serious reservations that it ever will. The reason for these reservations are that our protocol is a huge conglomerate of many things, the most critical being associated with the power of the mind. I frequently express my belief that the most important decision I made in this journey was to dismiss my traditional doctors, since they, by their own admission, had nothing to offer, beyond feeding tubes, mechanical aids, and a charting of my expected decline. This is not something I recommend to other PALS, especially if they have quality medical support in their efforts to find healing, but it is the “attitude” that is critical. Any study of PALS will require the support of their attending neurologist. I question seriously if we would ever get support from doctors to provide a panel of PALS to do a study, with this premise. Our belief is that a PALS neurologist and any other medical support, are simply member of his or her team, regardless of how important. The only one that will eventually heal a PALS is the PALS himself. We applaud Dr. Bedlack’s efforts and his work. However, I fear he is a rare breed of neurologist.
We believe there are many more such reversals that are swept under the rug, just as we feel mine has been. Many, like myself, have no confidence in traditional treatments and simply fall off the radar screen, as though we never existed. I am confident there are hundreds more of us, if not thousands. Once the doctors stop giving out death sentences, with no hope of recovery, I believe those reversal numbers will skyrocket.
In relation to the work of Dr. Bedlack, I was contacted by the Wall Street Journal in May of 2016. They published an article in June 2016 with a photo of me on the golf course. Find it by Googling “The Mystery of ALS Patients Who See Improvement”. This requires a subscription to WSJ, but there is also a photo copy of the article on our website.
After our return to Idaho in the spring of 2017, I saw an article on a therapy called EWOT, or “Exercise With Oxygen Therapy”. I had heard of the therapy a couple years earlier, but felt we were doing well with HBOT (Hyperbaric Oxygen Therapy). The information source was from a Doctor Mark Sircus, and it was intriguing. We ordered his book, Anti Inflammatory Oxygen Therapy, and after reading, invested in our own EWOT system. It has now replaced HBOT as an oxidative therapy.
The principle as I see behind EWOT is that oxygen is the great miracle drug created by God himself. By submerging our system in oxygen, we can give our bodies the tools it needs to heal itself from numerous ailments. The therapy involves filling a flexible oxygen bag with some 700 liters of oxygen, then inhaling the oxygen through a breathing mask while exercising. The theory is that by increasing the heart rate, the oxygen is actually driven into the body cells.
The reasons for the switch from HBOT to EWOT are three-fold. First, I have always felt the greater benefit of doing the hyperbaric treatments was the increased oxygen I was getting while in the hyperbaric chamber. I believe EBOT supplies a much greater amount of oxygen and is therefore more valuable. Secondly, EWOT is easier to do, and is actually quite enjoyable. It is an exhilarating experience to be pushing myself on my stationary bike, dripping in perspiration, and knowing there is still more in the tank. This from a guy that couldn’t climb a simply flight of stairs without a breather or two, six years earlier. Thirdly, the cost of setting up an EWOT system is a fraction of the cost of doing HBOT. Though we were fortunate enough to have had a little extra money to invest in our equipment after my diagnosis, for most PALS, this is not the case. Our goal is to help other PALS find healing. For most, EWOT is an affordable option.
This past year (in Nov of 2017) we celebrated the 6th year of my ALS diagnosis. I recognize I still have several limiting ALS symptoms. I have no limitations I cannot live with, pun intended. Line-dancing, bowling, jogging, and mountain hikes are not yet my forte, but swimming, golf, and evening dates with my sweetheart are integral parts of my life. My battle is not over but I am confident I am not just winning the fight, I am pummeling my opponent. I have no intention of letting up.
We have said many times, especially as we visit with or respond to the numerous PALS who contact us through our website, and in other ways, that we do not know what the number one key is to our winning formula. We believe it is a combination of many things. Those that stand out are the diet changes, the supplements, removal of toxins from our surroundings, and the oxidative therapies with ozone, HBOT, and now EWOT. But more important than all these, as vital as they may be, are the emotional, spiritual, and mental components of our protocol. I believe they are the greatest underlying source of our success. I have simply refused to let ALS define me or take from me the joys of living.
Why I have been able to do this, when so many others every bit as deserving have not, I simply do not know. But I believe the most important thing others diagnosed with ALS can learn from my story is that I am very real, that I have done what I was told was not possible, and that I truly have reversed ALS. Therefore, why not you also.
We believe there is great power that comes from service, from music, from laughing, and from loving relationships of family, and friends, for whom we are most grateful. Among those friends are the hundreds of PALS we have come to know and love over the course of the past six years.
As we have stated frequently, we have no medical expertise, and have no right to tell any other PALS what they should do to win their personal war with this disease. We only tell what we have done, which is what we hope we have accomplished in this chapter. What we can tell you is to live your life to the fullest. Study, research, love, serve, live with joy in your life, and find your own way to heal. Never let any human being; medical doctor, acquaintance, or even a loved one, tell you there is nothing you can do to beat this disease, even if there is nothing they can do.
Miracles do happen, and they start with the gift of hope and the power of belief.
God Speed to all our PALS,