My Book for Charity

Hi Blog Readers,

I'm down to the wire and in urgency mode... as you know, I have written a book on How a Neurological Disorder Changed my Life for the Better and am doing a campaign to attract readers and publishers...(which is now in the final 20 days).

The more books sold, the more publishers I will be pitched to... I'm shooting for 200 books sold. I'm at 27.

PLEASE (if you are able) click on this link and preorder a copy Thank you Patrick Bohan

https://www.publishizer.com/how-a-neurological-disorder-changed-my-life-for-the-better/

Remember, all profits will go to the Foundation for Peripheral Neuropathy. Thank you to all that have contributed.

How a Neurological Disorder Changed my Life for the Better

I am proud to announce that pre-orders for my book are now available at:

https://publishizer.com/how-a-neurological-disorder-changed-my-life-for-the-better/

Single book sales are discounted at $20 and you can be kept updated with the progress of the book by subscribing to the above website.

I am also proud to announce that I am partnering with the charity The Foundation for Peripheral Neuropathy. All book profits will go to their cause. Their website can be found at:

https://www.foundationforpn.org/

Below is a link to a brief summary of “My Story” published by The Foundation for Peripheral Neuropathy:

https://www.foundationforpn.org/2020/07/20/patrick-bohan-my-story/?blm_aid=1058487299

The Guillain-Barre Syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) Foundation International is also publishing “My Story” at a later date and their website is at:

https://www.gbs-cidp.org/

I have Multifocal Motor Neuropathy (MMN) and that is a very rare subset of peripheral neuropathy and GBS and CIDP types of neuropathy.

These are very good causes and I hope you are willing to join me to fight these illnesses that inflict millions of Americans and people around the globe.

How a Neurological Disorder Changed my Life for the Better

Pre-orders for my new book will be at www.publishizer.com from August 1 to August 31 and ALL proceeds will go to charity. There will be a lot of bonuses and free offers to pre-order books. I hope to complete the book by early next year. Below is information on the book:

How a Neurological Disorder Changed my Life for the Better: The Science behind Nerve, Muscular, and Neuromuscular Disorders and their Effects on Cycling

I achieved athletic success with a debilitating neurological condition for three reasons. First, training techniques can alter muscle protein composition overcoming physical limitations. Second, training can bypass diseased cells by creating alternate neural pathways for the brain and muscles to communicate. Finally, improving personality traits such as resiliency, grit, and mental toughness can help overcome physical limitations such as pain.

Synopsis

The good news is people are living longer, the bad news is people are suffering from higher rates of morbidity. Further complicating matters is that the medical community treats the symptoms and not the illness allowing people to live longer but the quality of life is reduced. Most reasons for morbidity are because our genes are being exposed to environments that they never experienced during the evolution process such as certain prescription drugs, less sleep, alcohol uses, smoking, exposure to toxins, stress, new illnesses, and certain foods. The result is disease and, in many cases, autoimmune disorders. In fact, according to Daniel Lieberman there is a good chance you will die from a disease caused by genetic mismatches with environmental factors. To put matters in perspective, according to the CDC there are about 600 rare diseases and the prevalence rate all 600 diseases in the United States alone is over 10%. What's worse, if all diseases are taken into account about 25 to 33% of the United States is sick or will be sick in the next few years. That is extraordinary because many disorders can be avoided through a well-balanced diet and exercise. If you have been suffering from disease and illness such as chronic pain then may be interested in this book.

This book explains my story and philosophy to cope with two chronic debilitating neurological conditions while competing in cycling. What's more, after 13 years of testing and visiting 9 neurologist I have been misdiagnosed several times and they are still uncertain about my current diagnosis. Thus, it is possible that I have something that is completely unique and science has yet to catch up with my disorder. The important facets of my story are acceptance, advocacy, adaptation, and attitude (AAAA). Although Peripheral Nerve Hyper-excitation (PNH) and neuropathy disorders can be debilitating and wreak-havoc on the lives of those inflicted, it is still possible to have a productive, successful, and meaningful life. Furthermore, without practicing AAAA, instead of winning races I would be requiring assistance to walk and to do other everyday functions. Although gene expression and adaptation for exercise and diet are unique to each individual, 99.9% of all people obtain some benefits. This novel book educates the public about my experiences and what I learned from my medical and cycling journey about a plethora of subjects including anatomy, epidemiology, physiology, neuromuscular disease, environmental factors, pain, fear, stress, depression, acceptance, adaptation, mental toughness, competition, diet, and endurance training to name a few. The bottom line is that not only is vigorous exercise achievable but so too is athletic improvement and success in the presence of a debilitating neurological disorder. Furthermore, athletic achievement is possible in the absence of athletic genes.

My experience and research have enlightened me to blog about peripheral nerve hyper-excitation (PNH) disorders. My blog post “The Misconceptions of Benign Fasciculation Syndrome” has produced over 150 thousand reads. Other blog posts I have written on the subject have received thousands of reads. Several years back I also participated in a forum on paresthesia symptoms on a Huffington Post webcast. I am not a doctor and do not hold a PhD in any educational field (I have a B.S. in electrical engineering). None the less, I have had several doctors stricken with PNH reach out to me asking for my advice. For instance, I sent the section on “Fear” to one doctor suffering from PNH and he wrote me back saying “The Fear component of the book is fabulous”. My communication with patients, my independent research for this text, my blogs, and my survey have provided me a clearer picture of what is going on but I am certainly no expert (I may know more than most, but no one is an expert). At the same time, I can speculate with more certainty about what is going on with me. As far as expertise in cycling is concerned, I have been competing in cycling the past 7 years and have been on the podium in over 100 races including national and state titles in time trial events. Yes, I have many cycling achievements, but what makes these accomplishments unique is that they were attained while I was battling two debilitating neurological conditions that impair both strength and power.

About the author

I authored two books, Moneysense and Defending Freedom of Contract. MoneySense is a book on personal finance and Defending Freedom of Contract is a book on Constitutional Law.

I have seen 9 neurologists over the past 13 years and my diagnosis has change 4 times. Currently my diagnosis is both cramp fasciculation syndrome (CFS) and chronic inflammatory demyelinating polyneuropathy (CIDP) or multifocal motor neuropathy (MMN). A definitive diagnosis has been difficult to pin point because my symptoms and diagnostic testing results do not fit any one disorder. My symptoms are vast and include motor, sensory, and autonomic nerves.

My neurological condition forced me to evolve to cycling 7 years ago after other activities were deemed a safety concern (rock climbing) or too painful (running). I participated in my first race at age 50 and have since won over 70 races and been on the podium over 100 times despite significant muscle power impairment.

Insurance Companies (BCBS) Playing God

As some may be aware of, I suffer from a neurological disorder. I have been through a cluster of tests over the past 12 years, seen 10 neurologists, and had my diagnosis change 3 times. In short, nobody is sure what is going on. To cut to the chase, my latest neurologist has diagnosed me with some unidentified sensory, motor, and autonomic neuropathy. She also believes that it is also possible that I may have cramp fasciculation syndrome (CFS), my previous diagnosis, but she is not sure. The crux of the problem is that my symptoms do not fit in any one bucket of disorders making diagnosis and differential diagnosis very difficult. Needless to say it is a very frustrating process and my next book will describe my ordeal and how I have tried to make the most out of bad situation.

My third EMG was positive for various types of issues including evidence of demyelination, axonal damage, and motor unit denervation. All are very serious nerve dysfunctions. Demyelination types of disorder at the peripheral nerves (Not the central nervous system, such as MS) are usually the result of some type of autoimmune attack. If true, immunoglobulin replacement therapy may help heal demyelinated nerve fibers and possibly over time some axonal nerve fiber damage. However, Blue Cross, Blue Shield (BCBS) rejected my insurance claim for the expensive treatment. Sure, there is a good chance the treatment may not help at all. But BCBS or any insurance company should not be in the business of playing God. If there is a remote chance it can help, they should grant the treatment. After all, it is a person's life we are talking about. You hear horror stories of insurance companies denying expensive cancer treatments to patients all the time because there is a high probability the treatment will not work, but there is a chance it could work and save a life. Insurance companies are there to help people, not to deny them service. And if we get socialist running the nation this problem will only get worse.

BCBS may think they are saving a few bucks, but are they saving society money? When insurance is denied that may help people then that cost is merely passed along down the road. If I felt better, I would not need to see the neurologist as much or have to continue to try other treatment methods (that do not cure, only treat the symptoms). When people are forced on the disability payrolls it costs the government and other institutions tens of thousands of dollars in costs and productivity. In other words, these decisions will cost BCBS in the long run as well as strain our already disability services.

Right now, I am waiting on my doctor who is protesting and challenging the insurance companies denial of service.

Why Torture the Body with Unnecessary Pain

My wife asks me questions like “why do I put myself through so much pain and agony with cycling?” or “why do I have to compete in cycling?”. She is right, I do not have to compete or put myself through so much pain in races or training. After all, I have a perfect excuse to avoid pain since I am already in pain with a neurological disorder. Thus, it defies logic and commonsense to enhance my pain levels. However, I have explained some of my reasons in the previous posts: For instance, having the good pain from training helps mask some of the bad pain from the neurological disorder. That is one important reason for my dose of daily torture on a bike. But there are other reasons as well.

Just eight to ten years ago I was being tested for sinister disorders such as ALS and MS. Everything came back negative, but I had the tests redone a few years later to double check the results since I was still convinced I had something majorly wrong with my body. These results also came back negative. Although, I was diagnosed with Cramp Fasciculation Syndrome (CFS), it could have been worse so I find myself as being very lucky. If I had ALS, I would currently be dead and not writing this blog post. CFS is no joy, but it is better than the alternatives. So, in my view, I was granted a second chance at life since I was convinced that I was dying just a few short years ago. When you get a second chance at life you not only realize that life is short and precious, but you also understand that you are mortal and life can end at any moment without notice. Most of us take life for granted, I know I was in that group. You need to make the most of life regardless of the adversity or the situations you may face. Furthermore, I was told that exercise intolerance was a sub-symptom from all the primary symptoms of my CFS disorder. My life was going to change for the worse because I would no longer be able to exercise with intensity or do many of the activities I love anymore. The doctors were partially right. I found certain types of exercise and activities no longer possible because of both extreme pain levels and safety concerns over paresthesia symptoms in my hands and feet (such as rock climbing). However, for some unexplained reason, I can cycle. Sure, it can be painful (proportional to the intensity of the workout), but it has been manageable. All that being said, each day it is becoming more difficult to ride (slightly, but more difficult none the less). The strange thing is that although my pain levels are going up after riding, I continue to improve. No one can explain this phenomenon.

Therefore, I try to explain to my wife what if she thought she would eventually lose the ability to cycle, wouldn’t she try to make the most out of what time she had with the activity? If she was given a second chance at life wouldn’t she try to make the most of it and pursue goals that have eluded her during her lifetime? If she was good at cycling and getting better even though she is in her 50s with neuro disorder, wouldn’t she want to know how good she can be, especially understanding it could be taken away without a moment’s notice? You have one chance at life, would she regret not making the most of an opportunity? Wouldn’t it be a crime not to use my legs (although in pain) when so many others are suffering around the world and they literally cannot use their legs? Sometimes we fail to realize how fortunate we are in this country and how lucky most of us are to have the freedom to do almost anything that we want. But when you lose many of those freedoms wouldn’t you want to make the most out of what freedoms you still have? Unfortunately, we never realize how much we miss something until it is too late and it is gone. And although I have evolved, I surely miss the activities I can no longer partake in, but I will not have any regrets when and if cycling is taken away from me. I am riding with passion and conviction every day. I am giving it my all. I will miss cycling if it taken away from me, but I know I put every ounce of effort behind the sport on daily basis, so I will have no regrets.

When Dreams Come True

I always dreamed of becoming a State Champion at something, it could have been anything: athletics or academia. Since my athletic prowess was limited, the closest I ever came was in my eighth-grade math club and that was not very close. Like most kids I dreamed of being a pro athlete and even making the Olympic team and winning a gold medal. All kids dream, but those dreams very seldom become a reality.

In 1979, I was a freshman in high school and a kid by the name of Keith Alston from neighboring Neptune High School won the state wrestling championship (Winning a wrestling state title in New Jersey was very hard since there was only 1 champion for all schools regardless of size). I read the article and dreamed about how cool that was and how lucky he was. I turned the page and there was a short article about how Alston died in a car accident coming home from the event. For years, I debated if Alston would have changed his destiny by giving up that state championship in exchange for the rest of life – about another 60 to 70 years. I don’t think Alston would have changed his destiny because he reached the pinnacle of his sport, a sport he loved and he trained so hard to excel. It changed my feelings about winning a state championship, I do not think there was anything out there more important than life until I found cycling because this sport comes with some risks.

After winning a state masters cycling championship (Colorado and Wyoming) in the time trial it made me truly understand the sacrifice, love, and pain associated with athletics. People do not understand the love people may have for a sport and how much suffering it takes to win a state title. I am certain Alston made the choice for his destiny. Why? Because I take some of the same risks every day. When I train outside I know there is a chance I may not see another day. Cars do not see you and even if they do they do not slow down or give you room. I go fast most days, and although I am going at or below the speed limit, when people see a cyclist they are not expecting them to be going 25, 30, or even 40 MPH so they pull out in front of me. I avoid at least one close call every week, yet I continue to ride and train. It would seem the risk is not worth it. Each year dozens of cyclists are killed or maimed from car accidents in Colorado alone. I try to mitigate risks by cycling on less busy roads, cycling at off peak hours, and wearing bright clothing but nothing will completely eliminate the risks. Why is it so important to risk life and limb? I do not exactly know. I believe being diagnosed with a neurological disorder changed how I view life. I literally thought I had ALS and would be dead in a few years. After ALS and MS were ruled out, I realized I was lucky to be diagnosed with cramp fasciculation syndrome. What I have is no picnic, but I have been given a second chance at life. Although exercise intolerance is one of my symptoms, I fight through it for one last chance to achieve some of my childhood dreams. The pain of training on top of a neurological disorder is extremely intense. I keep telling myself I will quit once I reach my full potential, but each day and week I keep getting better. I do not understand it and more importantly my doctors do not understand it. Yes, you can improve and get better at certain sports even in your 50s, 60s, and 70s. Each year I accomplish all my goals. It is amazing, I have never had so much success at anything.

I may not have ever been an Olympian or raced in the Tour de France but I race against a person who has accomplished these feats – Norman Alvis. Alvis was one of America’s best cyclists outside of Greg LeMond in the 80s (and 90s). Alvis was a U.S. cycling champion and held the one-hour time trial record (on a track) for nearly 20 years (it was just broken last year). Alvis currently holds the U.S. record for the one-hour time trial for the 50+ group. He rode the Tour de France and Italia multiple times. His team finished 10th for the team trial in the 88 Olympics. Alvis beat me by a mere 7 seconds in an 8-mile time trial earlier this summer (16:48 to 16:55). I may not have accomplished my dreams of the Olympics, but I am holding my own racing against a former Olympian. The success of Greg LeMond generated dreams of riding in the Tour, and although that did not happen, I am holding my own against a guy who did. This is just as good as accomplishing that dream.

Please do not give up on your dreams and goals. No matter how hard and difficult persistence and hard work generally pay off. I am not saying dreams are worth dying over, but accomplishing them before you die is well worth some risk. Unfortunately, it took a situation where I thought I was going to die before I truly pursued some of my dreams. We should not require a wake-up call before we show some urgency to live life to its fullest.

From Peripheral Nerve Disorder to State and National Cycling Champ

I am not going to go into any detail about my disorder (Cramp Fasciculation Syndrome - CFS) or its symptoms because I have written lots of articles on that subject in this blog. And I am not going to go into any detail about the havoc this disorder wreaks on the lives of people who have peripheral nerve disorders (PND) and how difficult it is to exercise, especially intensely (I have documented this in great detail). I will say without CFS I would have never found cycling. I had to evolve and find new sport activities since my disorder made it virtually impossible to do other activities without it being a safety concern or without a great deal of pain. Do not get me wrong, it hurts to cycle, but the pain levels are tolerable even when training at a high level.

My message in this blog is to tell folks with PND to keep fighting and evolving. Life it too short to miss out. This year I won the Colorado Masters Time Trial Championship (Age: 50+, Category: 4 & 5) and the National Senior Games 5K and 10K Time Trial Championships (50-54 Open Division). I finished 13th at the USA Nationals Masters Time Trial Championships (50-54 Open Division) – This is the most competitive national race. I was a mere few seconds from earning a top 10 finish and my time would have been good enough to place 5th in the 55-59 group which is less than two years away for me.

I am not too sure what is next for me. I miss riding a bike just for fun. Do not get me wrong, it is fun to go fast, but that fun is not realized until the race is over and you catch your breath. Training is fun, but it is really painful. I’ll continue to take it one day at a time and try to remain humble with my successes and learn from my failures.

My wife asks me why I put myself through so much pain and travel aggravation to compete. I told her a few short years ago I was being tested for ALS and MS and I thought I was dying. After being diagnosed with CFS it was blessing but my life was changing for the worse. When I found cycling it made me appreciate that much more that I have an activity I can do. I figured it was just a matter of time before the slow progression of my disorder took cycling away from me as well. So I wanted to make the most of what I had because it could go away at any time. I wake up every day and realize how lucky I am because there are lots of people suffering in this world much worse than I am. What I am going through was a wakeup call for me and I am doing my best to answer that call and make the most of it.

I have been told my entire life that I would not amount to much. My mother, when she was mad at me, would tell me how stupid I was since I had issues with reading and writing. I worked hard to prove her wrong. I got rejected at most schools because they said my test scores and grades were not good enough to be an engineer. I worked hard to prove them wrong. At work I was told product and test engineers were inconsequential and did not make a difference like design and system engineers. I became one of few product and test engineers to be named a Distinguished Member of the Technical Staff. Multiple neurologists told me my life would change for the worse and I would not be able to remain active. I have worked hard to prove them wrong. I really do not like it when people tell me I cannot do something and it motivates me to prove them wrong. My wish is everyone with peripheral nerve disorders also prove their neurologists wrong! Do not settle with what they prognosticate for you! I believe most people can overcome a great deal of adversity if they put their minds to it.

Pain is relative and it is impossible for anyone to know what is going on inside another human being. Maybe my pain is not as bad as others, but I know my hands and feet hurt a great deal. My muscles are sore to touch. I know I definitely have pain, but it is impossible to relate my PND experiences with others because we are so unique. Peripheral Nerve Disorders attack each of us differently and remedies that work for one person to relieve pain will not work for another. I receive several emails per week from people suffering and I do not have many answers for them, but if you want someone to talk with feel free to write me. I do my best to try to motivate others. When I wake up I say to myself there is no way I can train today. I never feel like training, but once I get going I feel better for doing it. I encourage those with exercise intolerance to force themselves to walk, they will feel better for doing it. Besides, the pain from training or exercise will mask the pain from CFS which is a much more desirable outcome.