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Noteworthy Information: Per the National ALS Associations website, 20% of those diagnosed with ALS will live 5 years or longer. 10% will live 10 years or longer, and 5% will live 20 years or longer. They even state that a small number have reversed their ALS. Why then, do we all walk away from that first ALS diagnosis with what is clearly delivered as a death sentence, with no hope of a long life and eventual natural death of something not called ALS.
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I, Mr. Kim Cherry, was diagnosed with ALS (Amyltrophic Lateral Sclerosis) also known as MND (MotorNeuron Disease) or Lou Gehrig's disease in November of 2011. I was told I had a year to live, no more than two at best. I believed the doctors for only a short time, then decided that dying of ALS was not acceptable. My wife, Kay and I, embarked on a journey to heal. We had to give up our favorite homemade bread (gluten issues) and many of our sugary foods. We made other significant changes in our diet. We introduced detoxing procedures and eliminated as many other toxins in our lives as we could identify. The changes have been worth the effort. I have been playing golf again for two and a half years, and gave myself a new set of clubs for Father's Day, 2013. In that same month, I walked my first 18 hole round in almost four years, and swam a mile in the spring of 2014. My improvement has been amazing and continues yet. We want to share with you what we have done and what others are doing to take the ALS road to recovery instead of the road to the grave. If I can do it, others can too.
Kim and Kay in Hawaii, Nov 2007 And here we are in Nov of 2010. Kim only has one Hawaiin shirt.
Kim and Kay in Hawaii, Nov 2007 And here we are in Nov of 2010. Kim only has one Hawaiin shirt.
We thought some new photos would be good. Above left was of Kim in April 2014. The biker photo was taken November 23, 2014. On November 21, 2015, we celebrated 46 years of marriage and on November 22, 2015, we celebrated 4 years since the death sentence. Kay thinks he looks pretty good for a dead man. The photo on the right was taken in November 2015 in Yuma, AZ.
Since we just uploaded a new introduction video, I thought it would also be good to update the longer version of my story. For it has now been over four years since that fatal diagnosis. We (my wife, Kay and I) have learned, and continue to learn much.
I am Kim Cherry, a 69 year old male diagnosed with ALS on November 22, 2011, after some 18 months of tests, guesses, and unproductive treatments, which included an unnecessary open heart surgery. I was told at the diagnosis by my neurologist, Dr. Heidi Orme, associated with the Saint Luke’s Neurology Department in Boise, Idaho, that my ALS was fatal, uncurable and untreatable. She would not give me a time table as to my life expectancy, except to say that the normal survival time for PALS (Persons with ALS) is three to five years from diagnosis. In a visit with my primary care physician, Dr. Frank Johnson just a few days later, after an hour consultation, I was told I had a year, two at best.
I was diagnosed with both Lower Motor Neuron and Upper Motor Neuron, or Bulbar ALS. The Bulbar, is generally considered much more severe, since it attacks the breathing and swallowing muscles, leading to pneumonia and/or asphyxiation, which are the leading causes of death for ALS victims. Lower Motor Neuron eventually progresses to Upper Motor Neuron, which actually causes death, but Lower Motor Neuron patients tend to survive considerably longer.
An additional note of interest is that Dr. Johnson recommended that I meet with a Dr. Robert Friedman, who heads up an ALS Clinic at the Elks Rehabilitation Facility in Boise. We called to make an appointment, but were not able to see him until the middle of January of 2012. We still made our visit to him, even though by then, we had made the determination to do all in our power to fight this disease. Dr. Friedman was also very kind, but gave us no hope. He told us that I should have a feeding tube installed as soon as possible, and that if I waited too long, the tube may not be able to be installed, because of stomach and muscle deterioration from the disease. He also told us that I should be on full disability, and that he would be happy to sign the forms right there. (I was still working 40 to 50 hours a week.) He, like both Dr. Orme and Dr. Johnson, told me that I should consider taking the drug, Riluzole, also called Rilutek, immediately. (Riluzole is the only drug approved be the FDA for ALS, and by their own admission, is said to provide only two to three additional months survival for some ALS patients, and carries some nasty side effects.) All three doctors highly discouraged us from seeking any alternative therapies, stating that they would only give us false hope, and take our money. He also advised that we should sign up for their bi-weekly ALS clinic, where we would meet with various specialist to help us navigate the progression of the disease and provide assistance where possible. I simply could not bring myself to sign up for the clinic.
I am a successful businessman, entrepreneur, engineer, and an inventor. To hear such declarations from doctors that I had come to trust was disheartening at best, and contrary to my whole life’s approach to obstacles. Over the next few days from the diagnosis, as the shock and depression subsided, my wife and I made the decision that we would not accept the prognosis and that we would do all in our power to fight this disease. I wanted no association with anyone, friend or professional, that did not believe I could beat this ALS.
The turn-a-round in my health in the past 64 plus months is nothing short of miraculous. Though faith, special religious blessings, and the love and prayers of friends and family, as well as our own prayers have played a huge part in our success, I believe God helps those who work to help themselves. Through our internet research which continues yet today, and tips from family and friends, we have found things that have worked for us. A great source of information has been from other PALS that we have had contact with, who are also fighting this disease, some with remarkable success.
I recognize that this insidious disease is different for most everyone that falls under its curse. The primary challenges I faced were number one, my ability to breath, and number two, my ability to swallow both Bulbar issues. I simply could not get enough oxygen, and felt I was slowly suffocating most of the time, but especially at night when lying down, sometimes taking 20 to 30 minutes to work my way down from a propped up sitting position. I was choking on liquids, and even on my own saliva. My lungs were filling with fluid. My right calf had atrophied considerably, and I had lost most of the strength in my right leg. I had severe drop foot, and my ankles would turn at the slightest miss-step. Though I could still walk, my balance was shot. I was losing my ability to speak. I felt like I simply could not get enough air to make the words come out. Just a few sentences would start a severe coughing spell. Walking more than a couple dozen steps required a breather, and a simple flight of stairs was daunting, requiring a mid-climb rest and a couple minutes recovery at the top. Also, the cold air seemed to almost shut my breathing functions down. A short walk in cold weather, such as from a restaurant to the handicap parking resulted in a massive coughing spell, which required several minutes reprieve before I could even start the car. I was experiencing severe muscle cramps, especially in my feet, calves, and thighs, sometimes experiencing three or even four cramps at the same time. Part of the issues with the cramping is that I had drastically reduced my fluid intake because of the fear of choking, which led to dehydration and further accelerated the cramping.
We continued seeing our team of physicians in Boise for a few weeks, mostly for counseling, but they still had no treatment program to offer, other than the drug Riluzole, ventilation aids, and feeding tubes. They prescribed an oxygen machine and a bi-PAP machine in January, and also suggested drinking carbonated water, which really helped the issue of fluid in my lungs. My last visit with any of these three doctors was mid-January, 2012, when we saw Dr. Friedman, as previously noted. Also, I will relate below, a follow-up visit to Dr. Orme in May of 2013 and again in June of 2015. I continued to use the oxygen machine at night until October 2012 and some during the day when convenience allowed. The bi-PAP, which I hated, was discarded after only a couple weeks use in early February.
We have researched and tried many therapies. Our first break came from a consultation with a chiropractor in Heber City, Utah, three weeks after my diagnosis. Doctor Jared Nielsen specializes in neurological issues, and had really helped a niece’s husband after a severe head injury. Doctor Nielsen determined I had a gluten sensitivity, mercury poisoning, and some issues with fungus. He recommended a protocol that included a gluten free diet, and supplements. Much of the protocol included in the theories of Dr. David Perlmutter, a neurologist out of Florida. Though I was skeptical, especially since I have never had any of the typical symptoms of gluten sensitivity, Kay was not, and I certainly had nothing to lose, but much to gain. And no way did I want her to say after my death, that I just wouldn’t try.
We started with Dr. Nielsen's program immediately (early December, 2011). Things did not get immediately better. About the middle of January, I survived a couple of the worst nights of my life, sitting up all night on a sofa, fighting for every breath. It was then that I started using oxygen, which really helped.
By late January, we started seeing improvement in my ability to breathe, though fatigue and strength were still serious issues, as was the cold. But perhaps one of the biggest benefits of meeting with Dr. Nielsen, is that he was the first professional that told me I had a good chance to beat the disease. Not only did I believe him, but I believed that he believed it too.
In April of 2012, we added ozone and hyperbarics to our protocol. We were introduced to these therapies by two herbalists in Tennessee that also used these therapies. Our studies on ozone and hyperbarics made sense, and after spending 10 days at their clinic, we invested in our own hyperbaric soft chamber and ozone machine, and set them up in our home. The total investment for the equipment was about $25,000, though this can also be done for considerably less. With our own equipment, we were able to control our schedule, and basically eliminate additional expenses. (Remember I am not spending any money going to doctors or hospitals.) They also used a series of their own herbs, which we continued to take into June. We have since backed off on the herbs. (Dr. Nielsen now uses both hyperbarics and ozone in his therapies.)
The treatments with the ozone and hyperbarics originally took from 4 to 6 hours a day. I gave myself an ozone IV three times a week for the first two months, then cut back to two times a week through most of 2012. There is a lot of information on the internet about both. Our studies include the writings of Doctor Paul Harch, an MD from Louisiana whose specialty is hyperbarics, and others.
Inserting here is a description of hyperbaric therapies and ozone and the value that we feel they are. First of all, Dr. Harch has never had any success with hyperbarics and ALS as he only does hyperbaric therapy. What seems to be the key value of the hyperbarics is that it helps to make the other parts of the program work better. Doing the ozone, taking the supplements, changing the diet in conjunction with the hyperbarics seems to accelerate the other therapies. We have read recently that hyperbarics can help with fungus/candida issues. Fungus thrives in a low oxygen environment. The hyperbarics for me may have also helped with the fungus in my lungs. Hyperbarics needs to be done in a series of dives (about 1 1/2 hours each dive) continuously for 20-40 days - one dive per day or two dives per day with at least a couple hours between dives if on the same day. Just doing a dive here and there once in a while is of no value.
Ozone is 3 molecules and two mate to form oxygen and the third has to find a mate. What we believe is that it finds junk in our body, toxins, free radicals, etc., and just deletes them. We believe (we wish we knew) that since the toxins are being deleted by mating with the ozone molecule, that the toxins do not have to be processed through the liver. IV chelation therapy can be dangerous if the liver is not healthy and able to process toxins. It can move toxins through the liver too quickly and create problems. See our April 2016 update for more information on the liver.
I mentioned earlier that my improvement has been phenomenal. I started playing golf again, riding a cart, in March of 2012. We listed my primary business, Extendo Bed Company (www.extendobed.com) for sale for obvious reasons in November, 2011. The business sold June 1, 2012. I continued working for the company for a four month transition period. In October of 2012, we headed South in a 40’ diesel pusher RV (We found a used one that we could fit our chamber in without gutting the living area) to get to warmer weather and lower elevation, both of which we feel have been important in my recovery. I also worked as a field rep for a few month in Texas for the company I had just sold. We spent the last three winters in Texas, and have now relocated our winter haven to Yuma, Arizona. I spent the last summer preparing inventory and promoting another invention. (www.slingpitcher.com).
We met with Dr. Paul Harch in New Orleans in February of 2013. He spent four hours with us, reviewing my death sentence from my neurologist (the ALS prognosis, and the EMG and Nerve Conduction Study results) and doing his own examination. He was truly amazed at my progress. As a mentor to our herbalist doctors in Tennessee, he had followed our progress. Dr. Harch is hyperbaric specialist, not a neurologist, but his reaction was that to his knowledge, no one else has seen the kind of results we have found, in that we have reversed the symptoms of ALS.
When we returned from Texas in the spring of 2013, l knew that I had made great progress. I contacted Dr. Orme’s office while still in Texas and made an appointment to see her as soon as we returned to Idaho. I expected her to say that I had been misdiagnosed and that I really did not have ALS.
My second visit with her was on May 25, 2013. She did a visual examination, primarily observing the fasciculation in my lower legs and feet, and told me that she could see no improvement in my condition. The fact that I had walked up two flights of stairs to her office, where as I had to take the elevator 19 months previous, did not seem to impress her. Still, I told her that I wished to repeat the EMG and Nerve Conduction Study, the two primary tests used to diagnose ALS. The earliest the equipment could be scheduled was late the next September.
On the 23rd of September, Dr. Orme repeated the two referenced test. At the conclusion, she told me that the ALS had advanced considerably, and that several additional muscle groups were now affected since the last test in November, 2011. She said her original prognosis (3-5 years) was unchanged, which I took to mean she gave me 1 to 3 years. I asked why I was feeling so much better now, and I could do things I could only dream about two years previously. She stated that she did not know, but that she was going to a seminar in a few months, where she would meet with one of the world renowned specialists on ALS and she would discuss with him my case. Needless to say, I have never heard back from her. I had a scheduled consultation with her for the next day, which I then cancelled. I suggested she send me her ALS patients, because I could do more for them than she could.
I have to admit that I was depressed for the next couple days, but a good swift kick in the pants from some earlier consultants in my fight got me back on course.
Another note of interest, is that by the time we returned to Idaho in that spring of 2013, I was having great difficulty in giving myself the IVs. The veins in my arms and hands were so damaged and scarred, that sometimes it would take up to six penetrations before I could find a vein that would flow. A good friend that was also a retired nurse, helped me do one as we returned through Utah in early May of that year. She could hardly believe, number one, that I could even be doing our own IV treatments for so long, and number two, that I had never had a hint of an infection, having done some 400 penetrations over the previous 14 months. She suggested I have a IV port installed.
After we returned to Idaho, I got a recommendation for another nurse friend for a surgeon to do the port. I have another endocrinologist that I have seen yearly for my prostate check for several years, who was also aware of my ALS diagnosis some 18 months earlier, and who saw me shortly thereafter. He was so amazed to see walk into his office again, (I dropped to the floor and did a series of push-ups when he came into the exam room), that he said he knew and would call the recommended surgeon for me. I had a port installed a week later. I also had great support from other health care professionals in my search for equipment and supplies to continue my therapy, simply because they saw I was beating this curse, and they applauded our efforts.
With the port, the IVs became a breeze, and I increased the frequency to a couple times a week for the next year but reduced them to once a year through the rest of rest of 2014 and into the summer of 2015 and had discontinued the hyperbaric dives from from since mid summer of 2014.
Returned to Idaho in March of 2015, I realized that I had started having more issues with my breathing. I decided to do a couple series of hyperbaric dives during teh summer, with each series including 40 dives of an hour each, I also increased the ozone therapies to three times per week, and over the summer, felt considerable improvement with my breathing issue,
I now do the IVs twice a week, but have stopped doing the hyperbaric dives again. With everything else I do, I just do not feel they are necessary, and it is a very expensive option for most PALS.
I continued to have hand and leg cramps periodically, up until November or December of 2012, but now seldom have any, even after walking a round of golf, as long as I make sure I stay well hydrated.
I started swimming again, in the winter 2013-2014 in Texas, where we had a lap pool at the facility where we were staying. In April of 2014, I swam my first mile in over four years, though it took me some 40 minutes.
I also no longer have the panic attacks from a lack of air, even when I overdo it with exertions, as I did before. I sincerely expect a full recovery. At the time of my diagnosis, I could squeeze out a couple push-ups, which exhausted me and left me gasping for air. Today, I can drop down and do 30 or 40, with minimal breathing issues.
Though I still have some ALS symptoms, particularly with my gait and balance, I expect to continue to heal. I may never be completely free of the disease, but I can LIVE with what I have.
I had some insurance issues I was working with, and needed to get another followup visit with my neurologist. I met with Dr. Orme last April, 2015. Dr. Orme was surprised to see my condition. She reviewed her previous test results, and confirmed her original opinion. She simply does not know why I am doing so well, and made two significant comments. The first was that perhaps I would be one of the "very very few" to beat ALS. The second comment was that whatever it was that I was doing, I should continue it. However, in her written evaluation of my visit, she was still somewhat critical, referencing my refusal to follow the standard recommended protocol of ALS, but noted that I was doing well with the alternative therapies. I will also mention that Dr. Orme is no longer associated directly with St. Lukes Hospital, but has gone into private practice. She is a very nice person, and is kind, but still will not really accept what we are doing.
One of the reasons we reduced both the ozone and hyperbarics, is that we want to determine if there are any adverse effects from these reductions. We believe they were an important part of our detoxification, but could be replaced by other treatments. Whether it is related directly or not, we have definitely seen a considerable continued improvement in my breathing issues this fall. I am swimming again here in Yuma this winter and feel my lungs and breathing are almost back to my pre-ALS symptom days.
We have since discovered many PALS that have had similar success in beating ALS. Some of these are referenced in this website. Though the protocols of each varies considerably, there are several common threads. Those are, first and foremost, a positive mental attitude, including a belief in a Divine source of power, proper nutrition and supplementation, and detoxification processes.
We are willing to assist, with our experience, research, and success, anyone else that is interested. Though I have been banned from the www.ALSforum.com website (probably the largest ALS support group in the US) for postings giving PALS hope, and labeled by some as a scammer, we have not made, nor do we intend to make any financial gain from anything related to this disease. We only tell our story, which we hope serves as a light at the end of this tunnel, and gives PALS the motivation and encouragement to find their own means to defeat ALS.
Best wishes and God’s speed to all PALS.
Mr. Kim N. Cherry
I have written a chapter for a book to be published about healing ALS by natural means with several different PALS adding their healing journey. Find the tab "Kim's Chapter" to read the full story of Kim's story. The page will ask you to sing in, but just x out of that and download the story.
Most of the rest of this web site was prepared by Kay Cherry, wife of Kim Cherry. Kim wrote the letter above and the symptoms and resolutions section. Many times I say we. That is because I am eating what Kim eats and doing many of the things Kim is doing. I had breast cancer four years before his ALS diagnosis and so had been studying extensively since then to find a way to prevent further cancer. I just added another dimension of study to include ALS. Our home is in Idaho but because of his difficulty in breathing in the cold weather the winter of 2011-2012, we have spent the last three winters in Texas (and another two winters in Yuma, AZ) in search of low elevation and warm winter weather. There is more oxygen to breathe at sea level. We returned to Idaho each April. This site is continueally updated and augmented. Try not to let the location of where we are confuse you.
We continue to study and learn so this site will be changing as we do. We will add resources as we find them. If you contact us, we will get back to you. Sometimes we receive a faulty email, and our reply won't go through. If you don't hear from us, please check your email for accuracy.
One futher thought. Kim says that you don't cure a broken leg, you heal it. We believe that you cannot cure ALS but as you heal your health issues, you can heal your ALS. We feel that so much of ALS is toxins in the body. How can a drug that has to be not natural by law and therefore contain toxins, be something that can heal a toxic body?