ALS is a progressive neurodegenerative disease. It robs its victims of the ability to move, talk, and eventually, breathe. It steals moms and dads, sons and daughters, and leaves most families financially ruined and emotionally drained. Here is my ALS story.
ALS causes the victim to ultimately lose control of all voluntary muscle movement generally starting with limb movement, then speech and swallowing, and, finally, breathing. Lou Gehrig was not the first person with ALS. He is, however, widely credited with bringing national attention to the disease first documented 70years earlier by Jean-Martin Charcot.
ALS was first documented in 1869 by French neurologist Jean-Martin Charcot. Since then, not much has changed. In 154 years, there has only been 4 FDA approved drugs for the treatment of ALS: Rilutek/Riluzole, approved December 12, 1995; Edaravone/Radicava, approved May 5, 2017, Relyvrio, approved Sept 29, 2022, and Qalsody/tofersen approved April 25, 2023.
ALS can affect anyone at anytime, but research with the ALS CARE database has found that 60% of patients with the disease are men and 93% are Caucasian. Research has also established that, for unknown reasons, military veterans and athletes are more likely to develop ALS.
ALS tends to only affect motor neurons that control voluntary movement, like reaching to pick up a phone or stepping off a curb. Involuntary movements, such as blinking and bladder control, are generally not affected.
Most patients are diagnosed with ALS between the ages of 40-70, but the disease can also develop in younger or older people. The average age for an ALS diagnosis is 55.
Approximately 30,000 Americans have the disease at any given time. Notable individuals who have been diagnosed with ALS include baseball great Lou Gehrig, renowned theoretical physicist Stephen Hawking, former National Football League player, Steve Gleason, SpongeBob SquarePants creator Stephen Hillenburg, actor Sam Shepard, and Grammy winning singer, Roberta Flack.
While we don’t know the specific cause of ALS, there are two categories for the ways people develop ALS: sporadic and familial.
Sporadic ALS occurs in patients who have no family history of the disease. Sporadic ALS is the most common form of the disease in the United States, accounting for 90-95% of all cases. This type of ALS can affect anyone.
Familial ALS In 5-10% of U.S. cases, ALS is genetically inherited, which is known as Familial ALS. In families with Familial ALS, there is a 50% chance that each offspring will inherit the gene mutation that makes it possible for them to develop the disease.
Half of all people with ALS live at least three years after they are diagnosed. Twenty percent of patients live five years or more, and up to 10% will live more than ten years.
ALS strikes nearly 5,600 people in the U.S. each year.
Symptoms can include twitching, cramping, or stiffness of muscles – muscle weakness affecting an arm or a leg, slurred and nasal speech, or difficulty chewing or swallowing.
The disease crosses all ethnic, racial and socioeconomic boundaries.
Men are affected more often than women.
Eventually all muscles under voluntary control are affected.
Because ALS affects only motor neurons, the disease does not impair a person’s mind, personality, intelligence, or memory.
Patients usually maintain control of eye muscles and bladder and bowel functions.
Patients lose their strength and ability to move their arms, legs, body, and when the muscles in the diaphragm and chest wall fail, the patients lose the ability to breathe without ventilatory support.
Beginning symptoms show in one of three areas: lower extremity, bulbar area, or upper extremity.
No one test can provide a definitive diagnosis for ALS, although the presence of upper and lower motor neuron signs in a single limb is strongly suggestive.
The diagnosis of ALS is primarily based on the symptoms and signs the physician observes in a patient and a series of tests to rule out other similar diseases.
Note from the author: Following are my raw notes that have not been reviewed for spelling, punctuation, grammar, etc. In addition to these things, please also forgive formatting errors, run-ons, incomplete thoughts, repeated information, and anything else that will cost you points in English class.
Looking back, I may have experienced symptoms for much longer, but I know I experienced symptoms in August of 2014. We were vacationing in the mountains of Red River, NM. We had taken the boys fishing and I had found a bench where I could sit and watch my l'il anglers. As I sat on the bench, I rested my foot on the ball of my foot. While waiting for the fish to bite, the heel of my foot was bouncing, almost uncontrollably. sort of like when you put a child on your knee to 'ride-the-horsey", only faster. The bench was higher than normal off the ground, almost to where my feet would dangle, but not quite. I attributed the involuntary movement to the way I was sitting, and carried on with vacation. Later in my journey, I would learn this involuntary movement has a name. It is called Clonus.
At a routine chiropractic visit, I discussed this involuntary movement with my doctor and it was noted as a "possible neuromuscular issue". I was 47 at the time and chalked it up to typical aging and made a mental pledge to get back in the gym. In my mind, I was far too young to have a neuromuscular issue. Time went on and the holiday season rolled around. We were at my uncle's house on Thanksgiving Day 2014, and I had the opportunity to give my boys a horseback ride. I had a horse when I was (much) younger, and had quite a bit of riding experience. The horse was fully grown, but still relatively young. There was also a mare there that was getting ready to foal and had been mean to the other livestock. Benjamin and I got on the horse and took a short leisurely ride past the barn to the back of the pasture, and back to the rest of our crew.
Something got the pregnant mare excited and she was prancing around the other animals with her tail in the air. Apparently, the horse I was on had experienced the pregnant mare's fury in the past and he didn't want any part of it. He began raring up on his back legs. Okay, I can handle this. Then, then he began kicking his back legs in the air. That's when we came off. In midair, God gave me the awareness to shove Benjamin away so that neither I nor the horse would land on him. I landed on my left hip, on my very incompressible wallet. I hurt. It hurt BAD. After I caught my breath, I was able to walk around, so I figured no bones were broken (thank you, dairy products). In the following days, I developed an EXTREME BRUISE, from my lower back, to the back of my left knee. It was black and purple, and permanent-marker-dark. I proceeded to heal and, in my mind, return to normal.
Around January 19, 2015, I was in Las Vegas for business. We had just finished lunch, it was 100% sunny, and I tripped and fell face first on the sidewalk. Again, I contributed my clumsiness to aging and vowed to get back in the gym. The following months brought more clumsiness and self-promises to get back in the gym. Around mid-August 2015, I had an epiphany...all of this clumsiness started AFTER being thrown from the horse. I promptly set an appointment with a neurosurgeon who got me in for an MRI the following morning. By this time, my clumsiness had morphed into stumbling, spasticity, and a robot-like, or Frankenstein-like walk. I had an obvious gait disturbance. I expected him to say "we found the problem, we can go in and fix it, and you'll be back to normal in no time". No such luck. My MRI was normal. He referred me to a neurologist to dig into what is going on.
For the next 10 months, I saw the neurologist about every 3-4 weeks. Each visit, I would be told "Mr. Reagan, you are worse", and she would add to the list of what my symptoms are NOT. Among the conditions she ruled out was ALS (whew!), MS, Kennedy's disease, HSP, MMND, and more. See, there is no singular test for ALS. Rather, ALS is diagnosed by excluding other, similar conditions. Oddly enough, ALS is NOT a reportable condition so no one knows for sure how many develop, have, or die from ALS. Instead, we must rely on self reporting to determine these numbers. If you have influenza, anthrax, HIV, gonorrhea, cancer, tetanus, tuberculosis, Coronavirus, spinal cord injury, traumatic brain injury, or any one of 50-plus other communicable and non-communicable medical diagnoses, your diagnosis must be reported to your local or regional health authority. However, if you are diagnosed with ALS, a terminal, 100% fatal disease, your doctor is not required to tell anyone. That's right. No state or federal office gives a damn whether you have ALS, how many are diagnosed with ALS, or how many die from ALS. Sad, but true.
Over the course of seeing the neurologist for roughly 10 months, I had 3 EMG's, a spinal tap to check for the SOD1 antibodies, and even Botox injections in my legs to try to help with the spasticity. I will not do Botox again, and my opinion is that you skip it if the subject comes up. So we have multiple Dr's visits, multiple tests, and no good answers. In July 2016 we vacationed in Belize. I was now on a cane full time and I missed out on numerous activities due to my declining mobility. I was getting fed up with no answers and was willing to endure pretty much any test to finally get some (good) answers. Being close to the Texas Medical Center where some of the top doctors in the world practice, I decided to make it my goal to be seen there. Baylor College of Medicine has a highly respected neurology department, and my research told me they practice out of St. Luke's Hospital.
I wanted answers. I needed answers. I was sick of not knowing. How is it we can put a man on the moon, 240,000 miles away, with just enough fuel to get the job done, with far less computing power than today's cell phones, but not one doctor can tell me why I have foot drop and walk like Frankenstein? Medicine has the ability to change out human hearts and perform full face and limb transplants, but doctors are dumbfounded when asked to explain why I walk like a robot. It is incredibly frustrating.
In my quest for answers, I called my father-in-law and asked him to take me to the St. Lukes ER, at the Texas Medical Center. I was going to get answers and I figured this was the best place. Imagine the look on the clerk's face when I (still very normal looking, not bleeding nor in pain, requested to be checked in and not allowed to leave until they had conclusive answers. The Baylor student assigned to me could see my obvious gait disturbance but really did not see a reason to admit me. He asked to video me plantar flexing in a standing position. I agreed because I've always had very well defined calves, and this would allow me the opportunity to show them off! ; -) In the hallway, he readied his camera, and...go. I had not tried to do calf raises since...Botox! Damn you, Botox! In the gym I could easily calf raise the entire stack of 450 lbs, so I was mentally defeated when I could not even lift my own body weight. The student's instructor, after seeing the video, agreed to admit me for further testing and observation.
The next day, July 29, 2016, would be a day I will never forget. Around mid morning, I saw a familiar looking machine being rolled into my room. Yep, EMG #4 coming up. The doctor performed the test wearing her poker face. She had to know something, surely. Even if she did, she never let it show. Then, a doctor comes in after lunch and identifies himself as a neurologist. I figured I'm going to get some long awaited answers. His bedside manner could use some polishing, because not very far into his presentation he ripped the band-aid right off and quickly identified my diagnosis as ALS. Whh, what? My neurologist, who has seen me a dozen times, tells me that it's NOT ALS. You can't both be right and, frankly I hope you are the one that's wrong. I can't tell you what he said after that because the room got cold and I felt as if I was levitating above my bed. In another image, I am floating in the room watching the doctor deliver this death sentence to someone else laying in my bed. I remember being glad I was merely observing and not being dealt this death sentence.
A couple months earlier, an orthopedist I had seen in my quest for answers contacted a colleague from medical school who was now at Mayo Clinic in Rochester, MN. This person was able to secure for me a series of appointments from August 16-19, 2016. The Dr. at St. Luke's recommended I go ahead and keep the appointment in order to have an additional opinion for such a dire diagnosis. I remember leaving the hospital, with Nancy driving, and crying most of the hour-and-a-half trip home. What was I going to tell my 10 year old boys? They were approaching very formative years of their lives. They were going to need me for guidance, direction, and discipline. This was a Saturday, and I remember, once I got home, lying in bed, crying, the rest of the weekend. This could not be. Someone must have made a mistake. I'm healthy. I take no daily medication. I'm healthy!
As soon as I could somewhat compose myself, I sat down with Dr. (worldwide) Web. WOW!! If you are the least bit unsteady in your beliefs about your own health, I strongly recommend against turning to the internet for health answers. Aside from the rabbit holes that suck away time at warp speed, there are images, lots of them, frequently uploaded by people with little discretion. Fortunately, my search was inherently G-rated. However, I did learn there approximately 7,000 rare diseases and roughly 80% of those are neurological. I learned there are many people in need of an effective therapy for ALS, and the number seems to be growing. Also, that ALS is often misdiagnosed as something else; and something else as ALS. I just knew I was going to be the latest misdiagnosis. I continued my internet search for answers any chance I had. After all, I was still working and I had houses to finish!
I would continue to experience new, and worsening, symptoms. I would adapt upper body movements to compensate for lower body insufficiencies. I'm sure my walk was quite comical as I had to somewhat flail my arms to maintain my balance or alter my momentum. Once, I fell in a convenience store, and I remember many times having to use my right hand to lift my right knee to get my foot off the accelerator and onto the brake when driving. For some reason, when I found something genuinely funny, my entire body would immediately go limp. Completely limp...instantly. I never got an explanation as to why.
At my house, my pool liner was shot and needed to be replaced. In between St. Luke's and Mayo Clinic, Bryan and Randy had volunteered to perform the labor and let me talk them through it. If you have ever been around these two, you are well aware they pick on each other non-stop, and most of it is quite entertaining. I remember leaning over the edge of the mostly empty swimming pool and the two of them going at it. I got to laughing and came close to falling into the deep, empty, pool. The more I laughed, the weaker I was, the more Bryan laughed, the more I laughed, and on and on. I was like a blob of Jello. You may remember, as a child, having a plastic toy that was either a human or animal figure on a plastic base. When you pushed on the underside of the base, the figure on top would immediately collapse. Release the underside of the base, and the figure would instantly regain its shape. That is EXACTLY how I felt! So far, no doctor could explain it. So, if I was going to be laughing, I had better be sitting, and as low as possible. I needed this ALS diagnosis to go away. It couldn't be correct, right? I'm too healthy to have ALS. Right? Well, Mayo is coming up and they will see things my way, I told myself.
We arrived at my first day of appointments at The Mayo Clinic. I must say, they run their operation like a very well oiled machine. We start by sitting down with a neurologist. She introduces herself, and goes on to say they have received and reviewed my medical records. Then, "We DON'T think it is ALS", she says. Yesss, finally, someone who sees things my way! Now, maybe we can get somewhere. Over the next couple of days, I had more tests, interviews, and consultations. Among them was bloodwork, an X-Ray of my left hip, and a 5th EMG and NCS (Nerve Conduction Study). They saw no indication of previously broken bones in and around my left hip. However, all doctors throughout my journey agreed (upon seeing pictures of my bruise from the throw from the horse) that is the worst bruise they have ever seen. In my mind, there has to be some nerve damage, surely. Right? I mean, major, major trauma to my left hip, then 6 weeks later I begin experiencing foot drop in my left foot. Coincidence or result? I believe the fall exacerbated the symptoms I was experiencing. If it is nerve damage, what can be done about it? The hip injury left me with considerable numbness in my left butt cheek. This numbness, though improving, stayed around for a year and a half or two, or more.
So, this brings us to Friday August 19, 2016. My testing, consultations, and bloodwork were complete. Today was the day I was going to find out how the massive team of doctors was going to use their huge knowledge base to fix me. I wonder if it will be inpatient or outpatient? How long will I be hospitalized? Will I receive treatment at Mayo Clinic, or will they coordinate with my local hospital back home? How effective will it be? How soon can they work me in? I had so many questions. Come on, get in here! She was late coming in which was uncharacteristic of our experiences thus far. Finally, the door opens, and in walks the doctor. Others in the room thought she looked teary-eyed. I only saw 'somber'. She begins with "We've reviewed your results..." Come on, out with it! "...we concur that your symptoms are due to ALS. " Man, what is it with doctors and their lack of bedside manner!? I know I began crying, and I believe the rest of my crew may have, too. I had done enough research since St. Luke's to know that just about any diagnosis would be preferred over ALS. Hell, even cancer has a success rate.
In the next few moments, my worst fears would be confirmed. I was told there is no cure available, and only 1 FDA approved treatment (rilutek) was available. This therapy was approved almost 21 years earlier on December 12, 1995. Thats right, 126 years for the first drug therapy to be approved for ALS. Even then, and still today, the drug was deemed only "modestly beneficial". Why only one FDA approved ALS therapy? I'm certain biotechs have submitted other potential candidates over the last 126 years? Don't we have a national association fighting for treatment therapies for ALS patients? All of this ripped through my mind in a matter of seconds. Turns out, through my dire diagnosis, I had stumbled upon the best kept secret in medical non-profit fundraising in history. More to come on that, later.
The rest of her presentation covered how they had checked, and rechecked, my test results to the point they can be confident in their diagnosis. She reiterated how there is no cure for ALS, and how the only approved therapy is liver-heavy and, at best, Rilutek extends life by only 2-3 months. She offered, again, how there is no cure for ALS and anyone offering such is, in all probability, a glorified scam. They did offer us ALS coloring books for the kids so the kids could realize in color how they were soon to be one parent short. I don't want your stinkin' coloring book. I want to know why we have had a national ALS Association for 31 years and all we have is one treatment that, on its best day, is mediocre. 31 years! Really, and zero in the last 21 years? And who is fighting for us? More to come on that, later.
I got to hear how they have done lots of research and after accounting for socio-economic factors, my history of onset, and my then ALSFRS-R score, that I should have about 20-23 months to live. Wow!! I had just been 'sentenced', I'm now on death row, and my final day is projected to be less than 2 years away. She talked about foot orthotics, knee braces, wrist supports, canes, walkers, and rollators. I was told about hospital beds, raised toilets, bedside commodes, and shower chairs. Then things got worse. She told us how, as the disease progressed, I would likely need a feeding tube, a tracheotomy and ventilator, and 24/7 care. How can it be that, in the USA in the 21st century, and with a disease that is 100% fatal, we have only one FDA approved therapy? This had to be wrong. In my research since my previous diagnosis at St. Lukes, I had only scratched the surface of "treatments", but some of them seemed to hold some hope. I asked if there were any other options. "Oh, there are some clinical trials. We just finished a Phase II trial that had some pretty impressive results..." she says "... so maybe you can get in the Phase III portion." She warned that the inclusion criteria had not yet been set. I would soon learn what she meant. It was, and still is, common for ALS trial inclusion criteria to limit the 'number of months since symptom onset'. After she had delivered all the good news I could handle, I left for my last appointment of the week. It was with Occupational Therapy.
Here, I was able to touch, feel, and try some of the various aids meant to help us adapt to life with ALS. Heck, I didn't want to adapt to life with ALS. I wanted to kick its ass! I wanted life without ALS! Those that know me, also know that I don't 'rollover' easily. In fact, I ran across a meme on Facebook that perfectly embodies my attitude towards ALS. It has a picture of large monkey (maybe a chimpanzee) holding a handgun, and the caption reads "If you're going to fight, fight like you are the third monkey on the ramp to Noah's Ark, and, brother it is starting to rain!" This would be my mantra. Kick things over, tear stuff up, and any rebuild would be at least a little different.
So, Mayo Clinic is complete. Since you shouldn't blame the messenger for the message, the overall experience went very smoothly. The appointments were well spaced and easy to navigate. I got the news I needed, not the news I wanted. It was now time to do non-stop research. I case you are wondering, the news doesn't go down any easier the second time around. As I was being rolled around the buildings, I was hiding my face so others wouldn't know I was crying. I couldn't stop. We took the shuttle back to our hotel, and got in the car to head to an early dinner. In the car, I got my first call from someone who had learned of my diagnosis. It was my senior English teacher from high school, Jeanie Barton. We have mutual friends that had told her of my first diagnosis. The call was very welcome, the timing was perfect, but I was unable to return much in the way of conversation. Inside the restaurant, I was still a mess. I didn't feel like eating, and couldn't get halfway through my burger. The next day was Saturday, our day to return home. Thanks to Nancy's employer, Southwest Airlines, we are able to fly for free, on a 'space available' basis. Normally, this isn't a problem. However, if there is a day of the week to avoid when flying non-rev, it's Saturday. We spent all day at the airport waiting for four open seats so we could leave MSP. Finally, we were able to get on a flight to AUS, via Chicago. Thanks to maintenance issues in MDW, we stayed the night in Austin, and didn't make it home until Sunday.
Upon our arrival home, we were greeted by our twin boys, who excitedly asked "Daddy, did they fix your legs?" The sudden realization that they, too, had expectations from our trip was more than I could handle. I immediately burst into tears. Their dreams had also been shattered. I couldn't bear to tell them I was firmly on death row. This couldn't be. This can't be my new reality. The internet would become my new best friend. We would spend a lot of time together searching for something that every single person before me had missed...for nearly 150 years. I can't tell you why I thought I would be the one to remove the final Jenga block of the ALS puzzle, I just know I was scared, and therefor, highly motivated. Then, there is denial. Yep, I was in denial, too. They told me how bad it would get. 'That won't happen to me', I thought. 'That only happens to other people, I am healthy'. Turns out, it is impossible to comprehend just how bad these losses would be, until they happen to you. I mean, who ever thinks they won't be able to write their name, feed themselves, scratch an itch, operate the remote control, whistle, clap, stomp their feet, open a door, turn the pages of a book, etc? I'll tell you who; NO ONE! Absolutely NO ONE! These functions, and countless others, are so deeply engrained in our daily lives that it is IMPOSSIBLE to accurately imagine life without them. Period.
I delved back in to my internet research. One of my early thoughts was 'for this to be a rare disease, there sure are a lot of people of people affected by it.' I had no problem finding current ALS sufferers, and those who had succumbed to this insidious monster of a disease. Some people lived months after receiving their diagnosis, some lived years. I even found stories of people who, because it took so long to receive their diagnosis, lived mere weeks or days, after being sentenced to ALS' death row. I couldn't decide which is better, fast or slow. I found stories of people who had taken Riluzole, and others who had made the choice to not take the only FDA approved ALS therapy in the 147 year history of the disease. I couldn't identify any difference in their outcomes. That's the thing about ALS; the only approved therapy claims only to extend life by 2-3 months. While that claim is hard to prove, it is equally hard to disprove. It offers zero improvement in your quality of life, only to give a little more quantity of life. Wait, what about that viral sensation Ice Bucket Challenge from a few years earlier? Surely that money has been put to good use? More to come on that, later.
The Ice Bucket Challenge took the internet by storm in the summer of 2014. Worldwide, people could not get enough of it. They found endless entertaining ways to douse themselves with ice cubes, ice water, or ice baths. The challenge was to cover yourself, however temporarily, with this freezing cold mixture. Then you earned the right to call out 3 others to do the same chilly display; video it; then share it online. Should you choose to not answer your call out, you were then 'obligated' to make a donation to the ALS Association. Many exhibitionists did both. It was a HUGE success. The most commonly seen figures are $115 million domestically, and $220 million worldwide raised for ALS research and programs. It was the single most successful fundraiser in history. That had to be a major boost to ALS research. Right? More to come on that, later.
The huge Irony of the Ice Bucket Challenge is that the recipient of the funds had nothing to do with organizing it. Zero. Nada. It was like pennies from heaven, except it was dollars (and LOTS of 'em) from heaven! Can you imagine the shock at ALSA when the money started rolling in? They had to be thinking 'How is it that something we had no part in planning, has raised far more money than anything we've ever attempted?' I'm no fly on the wall, and I wasn't there, but I bet I'm not far off.
Ah, The Ice Bucket challenge, the greatest single fundraising event in history! This is even more impressive when you realize it wasn't even planned. That's right, no formal organizing, it just caught internet traction quickly and, soon it went viral. No matter your country, language spoken, race, or gender, you knew about this internet sensation. People around the world were dousing themselves in increasingly creative ways. There are many stories about how it began and the people behind it. Most of them well-meaning, but inaccurate or false.
One thing that is for sure, and verifiable, is that ALSA tried to lockdown the internet domain, trademark, copyright, etc., for something they didn't do! Greed.
My internet searches found people pushing everything from natural and branded dietary supplements, Asian herbal treatments, acupuncture, blood ozone therapy, blood irradiation, oral and injectable antibiotics, a diet of 80% raw produce, and stem cell therapies to good ol' homegrown cannabis. Unfortunately, there is a subset of humans that find it profitable to prey upon incredibly desperate medical patients. Very few medical diagnoses conjure up desperation and fear the way ALS does, and certainly not in as great of numbers. I attribute this to the dire warning that accompanies an ALS diagnosis: There is no cure, there is no effective therapy, there is NOTHING we can do for you. Unless something else takes you out earlier, you will die from ALS. Certainly, there are diseases more miserable than ALS, and also those that number greater than ALS, but the combined misery and frequency of ALS make it one of the most dreaded diseases known to man. It can happen to anyone at any time for reasons unknown. This means we have no idea what lifestyle adjustments to make so we're less at risk for ALS.
One of the first ALS success stories I encountered repeatedly was Mr. Kim Cherry. He was diagnosed with ALS in November 2011. His positive attitude and outlook were infectious, even over the internet. He approached his diagnosis with steadfast refusal to accept his ALS death sentence. Admirably, he refused to be associated with anyone who didn't share his belief that he could beat this monster. He posted everything he was doing health-, diet-, and supplement-wise on his personal website, alswinners.com. He even posted his personal phone number and invited people to call with any questions. My father-in-law, Clayton, was at my office one afternoon and we did just that. Miss Kay, his wife, answered. Kim was busy, but she took my information and said he would call me back. My mind began to wonder...I bet it's hard for him to hold a phone, I bet he has a rough time talking, etc. I mean he was five years into a Bulbar ALS diagnosis in which his doctors gave him a year, maybe two, to live. Soon, the phone rang. Caller ID told me it was Kim Cherry calling. I braced myself, would I be able to understand him? Would the reality of hearing how far advanced he was (and, inevitably, where I am headed) be too much for me to handle?
I answered the call. "Hello", I said. "Is this Craig? This is Kim Cherry", he said. My first thought was that he sounds pretty darn good for a dead man. Maybe there really is something effective about the protocol he is using. He is undeniably alive. We did our introductions and swapped stories about ALS. Kim would tell stories about how he was now able to climb a commercial flight of stairs, play golf, go on walks, and more. We pALS have all been told to go home and get our affairs in order, and prepare to die. Yet, here is Kim doing things that he thought he had lost forever. Now, I have to tell everyone that Kim did not 'cure himself of ALS'. Rather, he found a diet and supplement regimen that works for him. His success is rare, very rare. No one can say exactly what he did that led to his improvement or slowed progression, but obviously something, or a combination of things, has worked in his favor. You can find his story on his personal website at www.alswinners.com.
ALS WINNERS - THE ROAD TO RECOVERY
The Index to all our updates can be found at this link: - https://www.alswinners.com/link-to-all-updates--index.html. In June of 2022, I have gone through all the updates and made corrections...
www.alswinners.com
I continued my search for anything that could help me. Soon, I ran across a man whose ALS had been well documented. He was referred to as the man who beat ALS. Ted Harada had phenomenal success with Neuralstem, a potential ALS therapy that Ted was treated with in a clinical trial setting. After his treatment Ted would say "there are days I forget I even have ALS". He could then climb stairs to tell his children good night. A feat that, before treatment, was next to impossible. Neuralstem uses a very invasive procedure (akin to a back surgery) where neural stem cells are placed directly in a specific location in the spinal column. Ted had great success with the trial procedure, but unfortunately succumbed to a brain tumor called glioblastoma. He passed in October 2016. Since he was part of a trial, he was studied fervently to determine if the glioblastoma was a result of his trial procedure. The conclusion is that it was not. Neuralstem has now become ???
Continuing my search, I encountered a potential ALS therapy that had recently filed an NDA for approval. It was an intravenous therapy that was already approved in Japan for stroke victims and had been in use there for 20 years or so. It is known as a super antioxidant, or free radical scrubber. The FDA had contacted the parent company, Mitsubishi Tanabe, and invited them to apply in the US for approval as an ALS therapy after seeing
More to come soon
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