This transcript of the DVD “Coping with Chronic Neuropathy”, is another act of very hard work and love and prepared by Danielle Marie Boyd, Autoimmune Neuropathy Patient. We are very grateful for the work that went into this transcript especially since Danielle has limited use of her hands and it once again shows the determination and courage of so many of our neuropathy patients. It is hoped that hearing impaired patients will benefit from this transcript and that support group leaders will be able to use the material in the classroom setting.
Begin transcript:
Seminar by Eugene B. Richardson, M.Div., Ed.M., MS, LtCol U.S. Army (Retired)
Founding Director of the Network for Neuropathy Support, Inc., dba Neuropathy Support Network, Professional Counselor & Neuropathy Patient
Recipient of “2010 You Are Our Hero Award” Neuropathy Action Foundation Inc.
NEUROLOGIST COMMENTS
“A story of hope and courage as told from the perspective of the real world of the Neuropathy patient.” Thomas H. Brannagan III, MD, Neurologist, Director of the Neuropathy Center of Excellence, Columbia University, NYC
“For 4 decades Gene has struggled with the challenges and relentless symptoms of neuropathy, and now as a professional counselor and teacher he proactively shares his insights both as a professional and patient.” Alan R. Berger, MD, Neurologist, Director of the Neuropathy Center of Excellence, SHANDS, University of Florida, Jacksonville, FL
“When it comes to dealing with neuropathy having the right support is critical and this DVD is a great place to start.” Waden E. Emery III, MD, Clinical Neuromuscular Neurologist, Lighthouse Point, FL
PATIENT COMMENTS
“You genuinely brought us all to tears while providing an amazing amount of hope and inspiration” from Dominick Spatafora, Founder and President, Neuropathy Action Foundation, Scottsdale, AZ
“Your knowledge, insight, and compassion impressed the audience and I have heard many people say they were so glad to be, as one person put it, in the presence of such a brilliant man” from Mims Cushing, writer and neuropathy patient, Ponte Verda Beach, FL
ABOUT THE COVER
A human figure stands alone in a large field, buried waist deep in grass, arms reaching out in lonely isolation, seeking answers. Millions of neuropathy patients reach out blindly toward some sense of help, from “somewhere.” The human figure symbolizes many patients, experiencing neuropathy in an isolated world of strange symptoms. Feeling buried under negative opinions, loss of purpose and friends, often alone in their struggle, with courage they reach out. In this simple act they find hope in a network of patients and a few professionals. The purpose of this DVD is to help others reach out, find answers, spread hope and encourage clinical training. – E.B.R.
CHAPTER GUIDE
This Production was made possible by the donation of skill, equipment and time of the following professional volunteers, without whose passion and commitment this DVD would never have been realized!
Emotional support from our loving canine friends from the late loyal peace giving Bear Beethoven Richardson DVD Star 2010, the late wiggles who wiggled into our hearts forever Hailey Wiggles Richardson DVD star 2010, the late fluffy girl Kelly Girl Richardson who we had for only nine months, all missed with painful hearts and Rocky Bones Richardson and Bella Girl Richardson who now fill our hearts with love with his funny face and her hugs!
WHY CLINICAL TRAINING IN NEUROPATHY?
Are many forms of Peripheral Neuropathy rare or are they under diagnosed? Informed medical professionals know that they are rare due to inadequate tools for diagnosis, lack of clinical training and the lack of broadly accepted standards for diagnosis. Many forms of this disease are under diagnosed and that alone makes them rare! The neuropathy epidemic and its cost to society demand that we provide more funds for clinical diagnosis and treatment of the neuropathies.
CHAPTER CONTENTS:
1. Introduction: Chapter 1 Reviews and Endorsements with Introduction by Dominick Spatafora, Founder and Director of the Neuropathy Action Foundation, Santa Ana, CA.
2. Doors of Hope: Chapter 2 encourages patients to seek hope by increasing their knowledge about neuropathy. They are encouraged to learn how neuropathy affects their body and to adapt to these challenges in creative ways. Patients must understand the limits imposed by poor medical attitudes, limited diagnostic tools, and limited treatment options available for a disease with over 100 causes. Encouraging patients to discover what may work for them, as we support each other and the critical need for increased clinical training and neuropathy research.
3. New Purpose: Chapter 3 covers the importance of adapting to chronic illness. Patients must find a new purpose for living and discover what brings them a sense of peace providing serenity to life in the midst of the many challenges of a chronic neuropathy.
4. The Journey: Chapter 4 speaks of the seminar leader’s journey of four decades with undiagnosed and untreated neuropathy. Patients are challenged to continue searching for knowledge and medical help in the hope that eventually they will find knowledgeable doctors as well as practical help from neuropathy patients who have discovered creative ways to live better with neuropathy.
5. Why & What: Chapter 5 is about the question every neuropathy patient will ask: “Why Me?” Here the patient is encouraged to transition from “Why me?” to “What now?” and will find new hope and meaning for their lives in the second question.
6. The Inner Child: Chapter 6 shares the important insight that it is our inner child that allows us to play, laugh, and see the humor in life. Patients are encouraged to see humor and the simple joys of life, which have important healing effects on the body, physically, emotionally and spiritually.
7. Knowledge: Chapter 7 speaks of being an informed patient empowered to become a partner with a doctor in search of solutions. The reasons the patient must become an informed empowered patient are made clear.
8. Books!: Chapter 8 notes that after decades of limited reliable help for patients, the speaker recommends three major books which helped him. It is important that the neuropathy patient purchase these books and to read them to be better equipped to work as a partner with their doctor. The hope is to find paths to diagnosis and possible treatment options. The chapter ends with a caution that we must set realistic goals in the world of limited diagnostic tools as we seek help with an illness that needs more research and answers.
9. Patient Support: Chapter 9 discusses the importance of receiving and giving patient support. This support frequently is the only life line the patient has toward hope and affirmation. Patients often have practical ideas that can be helpful to others and information on where to receive help. Without patient support, you can truly be all alone on a frightening journey.
10. Anger: Chapter 10 opens insights into the hidden power of anger that can either be your destructive enemy or your empowering friend! Here are important skills on how to turn anger into your best friend through better thinking.
11. Adapting: Chapter 11 deals with the all-important subject of adapting to the challenges of neuropathy through a willingness to show strength by using aids available to us. Our ability to take advantage of help available is a sign of strength and encouragement, not weakness and defeat. Sharing a practical exercise, the speaker notes that this is a powerful tool for evaluating the changes we must make.
12. Focus: Chapter 12 answers the question of many neuropathy patients, “Will I get worse?” Here patients are encouraged to resist a focus on their worst fears and the speaker shares a suggested list of ideas to help patients focus on today not on the unknown fears of tomorrow.
13. Doctors: Chapter 13 provides insights into the importance of a partnership with the doctor. Is the doctor God? Can I help the doctors think? How important is my medical history? Should the doctor focus on the past or present? You will find that patients often help answer practical questions the doctors can’t answer.
14. Family: Chapter 14 speaks of skills in getting support from family or friends without dumping the whole nine yards of our ills on them. Ideas are shared on how to prevent dumping and how to avoid driving people away from us.
15. Work Place: Chapter 15 discusses the climate of the workplace as a factor in what you do or avoid doing at work. Practical guidance is presented to help patients tread through the emotional and practical minefield of your employment, when neuropathy affects your ability to work.
16. Our World: Chapter 16 takes the patient to a secret place of peace in the real world of the neuropathy patient. The poem, “IT IS ENOUGH”, written by the speaker from the heart, provides an important pause for the discovery of ways to live a better life with neuropathy.
17. Closing: Chapter 17 features closing statements by his late doggie friend, Bear Beethoven, who teaches us how to live with neuropathy. The closing challenges everyone to reconsider statements that many neuropathies are rare. The truth is, without adequate tools for diagnosis, they are simply under diagnosed and that alone makes them rare! Hailey Wiggles, shares the speaker’s disclaimer with a touch of doggie humor. Bear, Hailey Wiggles, Kelly Girl, Rocky Bones and Bella Girl all remind us of the important role pets and music play in helping us cope with neuropathy.
18. Credits: Chapter 18 lists the professional volunteers who provided freely of time, equipment and skills in making this production possible, permitting the maximum amount of funds to be raised in support of Neuropathy research. SEVEN of them work with various forms of neuropathy.
ABOUT THE SEMINAR LEADER
Eugene B. Richardson is not defined by his many titles, significant academic achievements or decades of experience. He is defined by his choice to use his knowledge and decades of experience coping, to help those suffering with Peripheral Neuropathy. With creative coping, he has never stopped asking “Why” it took thirty-five years to get help for his neuropathy. Armed with the growing realization of poor public attitudes and a lack of awareness toward neuropathy, he realized that medicine did not have broadly accepted diagnostic criteria, sufficient clinical training, or tools needed for timely diagnosis, a situation made worse by limited treatment options. With courageous determination in the face of medical denials for four decades, he never stopped looking for answers and has brought together a team of nine professional volunteers, to produce this DVD to help neuropathy patients and become part of the solution. Using his VA disability funds, he developed a supporting website for patients to help patients. As he would say, “Please, seek answers for yourself, but then throw yourself into the fight to help others and support the search for more answers to the question, why?”
REVIEWS AND ENDORSEMENTS
The following presentation has been reviewed and endorsed by:
Dr. Alan A Berger, Professor of Neurology at The University of Florida, SHANDS, Jacksonville, FL
Dr. Thomas H. Brannagan III, Professor of Neurology at Columbia University, New York City
Dr. Waden E Emery III, Clinical Neuromuscular Neurologist, Lighthouse Point, FL
Dr. Scott I Berman, Psychiatrist and Neuropathy Patient, Bethlehem, PA
and by over 5000 patients and professionals around the world who have praised and benefitted from this presentation since 2010.
INTRODUCTION
Hello, my name is Dominick Spatafora, neuropathy patient, Founder and President of the Neuropathy Action Foundation, a non-profit dedicated to empowering neuropathy patients around the world.
In 2010 we were privileged to be one of the first to hear Colonel Richardson’s presentation in Sacramento. We have never forgotten his humor, courage, and wisdom that he shared with us on that day.
Since then the Neuropathy Action Foundation has been working closely with the NSN on our shared mission of providing patients help and support. Dr. Thomas Brannagan of Columbia University wrote: “This is a story of hope and courage as told from the perspective of the real world of the neuropathy patient.”
United by our shared commitment to the neuropathy patient, it is our sincere hope that this presentation will provide you with information not otherwise available to you that will assist in your personal struggle with what can be a very disabling disease.
And now here is Colonel Richardson, drawing on four decades of his own personal struggle sharing his insights on ways to cope with chronic neuropathy.
COL RICHARDSON
Eugene B. Richardson, M.Div., Ed.M., MSM, MS Counseling Psychology Autoimmune Neuropathy Patient
Well, the reason I got into doing these presentations on coping with neuropathy is a long but short story. The short version is that for many, many years – 39 to be exact, I went undiagnosed since leaving Vietnam and fortunately discovered the work of The Neuropathy Association in 1999, their newsletters, other patients who shared their story, and when I read their story, I said “Holy Heavens, that is me!” And so I began to understand that I did have a disease that had to be dealt with. Then it took another 5 years, because of the state of the art, to finally get a diagnosis in 2004 which, by that time, I couldn’t walk, I couldn’t breathe, every part of my body was not functioning. I had pain that was just unbelievable. But, spending all the time…I mean just an awful state, and a neurologist then started me on gamma-globulin, which is IVIg, and within one hour after that many years, decades, I stood up out of my wheelchair. I call that my miracle day.
Doors of Hope
So you have neuropathy? And do you feel like there are more doors closed than open? It is our prayer and hope that in this presentation you will find many doors open, giving you more hope and more courage to find solutions and help for your chronic illness that we call Peripheral Neuropathy.
The subject we have today is a large one. It’s a very large subject, as a matter of fact. For, as you will learn, knowledge is one of the critical factors for your journey in coping with a chronic neuropathy. The 2nd thing I want to clear on is that I am not a Medical Doctor. I have lots of education. But what I share with you today is meant to be educational, not prescriptive, and not diagnostic. As such, this presentation will encourage you to consult with your own personal treating physician and work with them as you seek help for your neuropathy.
It was Gandhi who said that a person’s strength does not come from physical capacity. It comes from an indomitable will.
There are many things in life that are difficult, some more than others. But, at the top of this list has to be coping with a chronic illness over a period of years. And by chronic I mean anything that lasts more than 60 days is chronic. With strange symptoms, symptoms that sometimes come and go, that few totally understand, often no one can see…”Oh, you look so well”… until your foot drops or drags and you fall. Some doctors even refuse to acknowledge neuropathy and call it the Trash Disease. Or they refuse to affirm you and you’re a bother and the doctor writes in your record ‘this patient is well known to the clinic’. You get the drift. Or some say ‘you have neuropathy but there’s absolutely nothing you can do’. So coping with a chronic neuropathy has got to be at the top of the list of difficult.
In this presentation, you will see that we have come a long way since the years 1969-1999, as doors of insight are being opened yearly into this condition as research and knowledge increases. In discussions, as Mims Cushing was writing her most recent book on coping with the peripheral neuropathy, Dr. Latov said to her that he thought of neuropathy as coping with various degrees of torture!
And, I would add, made even more difficult by the lack of simple affirmation or practical help or solutions for the struggle. There’s a book that’s called ‘Sick and tired of being Sick and Tired”, which says it all. So how do we cope with a chronic neuropathy?
(2013 NOTE: One of the best comedy routines on the issue of affirmation was in two episodes of the Golden Girls TV show, season five, “Sick and Tired I and II”. Use this link to purchase a copy from amazon.com.
New Purpose
First, I see what has happened to me as a serendipitous type of journey of ‘Chance Discoveries’, where we learn to live anywhere with anything. As a military man, I even lived and slept in a rice paddy under water. A journey of adapting, determination, will; when neuropathy changes our lives, coping is a journey in search of new meaning and new purpose for living. My late dog, Bear, taught me the truth as you will see in a moment.
Second, it is a journey with a disease, affecting people of all ages. Someone will make it “not a disease” or “it only affects the elderly”. Not true. It is a disease of the peripheral nervous system and peripheral autonomic nervous system. Not a disease of the feet, although it often affects the feet. Or just something diabetics get. Although a lot of them do, some of them don’t. Or, not a disease called pain! Some neuropathies do not involve pain. But a disease with 100 causes or more, some known, some unknown, affecting both sensory and motor nerves of the peripheral nervous system, and is something many of you have had to learn to cope with in your living. So what does Bear have to say to us, to learn about coping?
———-Introduction———-
“BEAR’S SECRET TO LIVING A BETTER LIFE!”
Bear had a secret. Bear was my old dog; I had him for 14½ years. I lost him in February; his name was Bear Beethoven Richardson. But he had learned a secret to living a better life, and that secret you see in the PowerPoint:
“REMEMBER TO BARK AT THE GARBAGE TRUCK AND DON’T FORGET TO SMELL THE BREEZE”
Now what does that mean? By 2008, Bear’s legs didn’t work correctly; he had strange, weird pains ever-present; his body functions no longer worked correctly… Sound familiar? Unsteady on his feet, he would try to turn and fall down… familiar?
No longer able to run, yet he would try to bounce along with his back legs the best he could. You could sense he was searching, like you, for something, with a determination of will which would have made Gandhi proud. He was searching for a new purpose; a new purpose in life, given his disabilities, and then he discovered he could bark at the garbage truck! That became his whole essence of his life and, for a dog, that’s not bad. This, and our slow walks with the scooter, became his new purpose in life, as Bear learned to adapt, as you must, to the limits set upon him by his disease.
He was also searching for a sense of peace and serenity within his life and that is when he discovered breathing. Here he would face into the wind, pause, smiling as only a doggie can smile, and began doing a simple thing: breathing. Slowly breathing; taking in a full measure of cool air, a breeze down in the brutal winter of South-Central Florida.
The wind gently rustling through his long, black, strings of hair, he stood, solid, majestically; facing the wind, pausing slowly, just enjoying the act of breathing cool air. He was a dog who had found the secret to living better with a chronic illness. While enjoying his secret place out under the tree, he had discovered his purpose in life and how to breathe; a simple thing.
The Journey
Who Am I?
• Over three decades counseling experience plus teaching Behavioral Sciences at graduate level.
• Forty-one years coping with autoimmune chronic neuropathies, since exposure to the carcinogens in Agent Orange in 1968 during the Vietnam War.
I am educated. I am experienced. More degrees…my dad always said I kept going to school because I was a slow learner; four decades in counseling and guidance, and I care about people. But what I share with you today is not about education; that helps but it is a serendipitous journey of discovery. Discoveries made in 41 years involving fear, disappointment, confusion, horrific symptoms, self-doubt, unbelievably strange pains or sensations, emotional pain, the loss of my career twice, disability medical denials, unbelief at the failures of medicine and unhelpful attitudes toward neuropathy, anger, hopelessness, defeat…but then, affirmation…and discovery…as a few great doctors stepped forward and the wonderful neuropathy patients opened some doors of hope.
Trusting in God, in the darkness; life driven by a strong belief of what my body was telling me; life driven by an obsession for knowledge; life driven by the curiosity and the “why” of a 2 year old child; life surrounded by my family, grand-children, my music, my pets, caring neuropathy patients, and a few great doctors who, most of all, knew how to LISTEN, ACTIVELY, to the patient: I found affirmation. Thirty-one years into the journey, from The Neuropathy Association (TNA dissolved in Dec 2014 and no longer operate) and their newsletters in 1999, information that kept me going until I found a clearer diagnosis and treatment in April of 2004.
Yes, it took another five years.
When all my symptoms from ’69 responded to an infusion of gamma-globulin, IVIg, “Liquid Gold” Dr. Berger calls it, now permitting me some relief from my nightmare, helping me walk, or stand a little more, and, most important of all, to breathe. The reason I share it with you is only to bring you the importance in coping: of prayer, of humor, of patient knowledge, and of patient support; to share with you my discovery in coping with the power of anger, the power of adapting, the power of focusing on today, the power of getting support from your doctor, the power of getting support from your family and friends, and the power of getting support from the workplace, and, finally, sharing the power of having a secret place of peace, the power and importance of music, and of pets, as important components in coping that I discovered, and rediscovered, in my journey. And I thought the doctor said “there was nothing you could do”. Well, there is.
———-Tweedy Bird’s Prayer———-
Dear Lord, so far today, I am doing okay. I have not gossiped, lost my temper, and been greedy, grumpy, nasty, selfish, or self-indulgent. I have not whined, complained, cursed, or eaten any chocolate. I have charged nothing on my credit card. But, I will be getting out of bed in a minute and I think I will really need your help then.
Why or What
The Rabbi said to Scott Berman, the Psychiatrist, and my friend in Pennsylvania who has CIDP by the way and whose book I will recommend later…the rabbi said “It must seem like God has crapped all over the Universe or, in this instance, your Universe.” Dr. Berman states great wisdom when he speaks of acknowledgement of any anger at God as the first step in coping with the issues at hand in chronic illness. It is okay to be angry at God.
The power of faith in the lives of people has been shown over and over again. On the battlefield, we speak of there being ‘no atheist in the foxhole’. Yet, one of the ironies of faith is in a statement by the rabbi and, for the Christian, in the ironies of events when it seems like God has turned His face away…that it does seem that God has ‘done you’, so you to speak. When we face horrible chronic illness and ask, “Why me?” while attempting to dwell on self-pity. That’s not a place to go. But there is wisdom in turning the question away from self to a better question focused on God, as in “What does God want me to do now?” Here there are many wonderful answers and discoveries and where I invite you to go with your faith in God as you learn to cope.
Humor as a Healing Agent
Learning to laugh, allowing your inner child to play, seeing the ironies in life, rediscovering the simple things that you enjoy, are critical skills in Coping.
The Inner Child
Learning to laugh:
Humor is CENTRAL to coping. It’s all around us; almost everyone in this audience ~maybe~ will remember the Bud Abbott and Lou Costello routine of ‘Who’s on first… What’s on second…? I don’t know… Oh! He’s on third’ and I come out of that laughing so hard I couldn’t even see. And the inner child is the only part of you that knows how to play.
In North Carolina, in the winter, I had my grand-children help me up the hill on the old sled from my childhood. They helped me down, shoved me off… “Are you sure you want to do this, Pop?” Took only about 30 minutes to get on the sled, and down the hill I went, reaching speeds of nearly 100 miles per hour… well, more or less. Laughing all the way, crashing at the bottom of the hill, rolling over into the wet snow… “Pop! Pop, are you okay?!” Of course it took over 30 minutes to help me stand up as Bear was licking my face, but what a simple joy and a memory for everyone. It was my child that allowed me to do that.
Looking in the face of the ironies of life as we went to North Carolina to see snow, only to experience the warmest winter in the history of Murphy, North Carolina. Thinking we were going to die in the heat of a North Carolina winter, but making fun and making discoveries anyway, everyday. Until two days before we were to leave: a miracle…it snowed, like it never snowed in a long time, in Murphy.
Three days…a miracle. At the end of that vacation in the winter, we had discovered the simple things with 10 million useless photos of snowflakes in the air, taken by grand-children discovering the importance of snowflakes.
Humor has a healing effect on the body. Seek it, find it, dwell on it, and create it; allow it into your life. Only the kid in you knows how to have fun. If you cannot laugh at all or enjoy simple things in ironies, like watching endless reruns of The Golden Girls, which I love, coping with a chronic illness is much more difficult.
The Importance of Patient Knowledge
“The better-informed patient is often able to play a vital role in his or her own care. This is especially the case with neurological disorders, for which effective management of disease can be promoted – indeed, enhanced – through patient education and involvement.” Lisa M. Shulman, M.D., American Academy of Neurology
Knowledge
In the 1960s, 70s, and 80s, and 90s even, all the way into 2007, there were no books to help those with Neuropathy that were very helpful. Lots of snake oil, a lot of suggestions, a lot of people, some told me all you had to do was exercise more…don’t go there. Your journey was like flying blind, at the mercy of medical ignorance, society’s ignorance, and you had no idea how to help the doctor help you with these strange symptoms…and that’s when, in 1999, as I said, I found neuropathy patients with Dr. Norman Latov MD PhD who supported me with knowledge, after so many experts told me “nothing’s wrong”. Without knowledge, the journey is very difficult. We all need it.
But, beyond that, the fact is, a passive, dependent patient with a chronic neuropathy may not get the help they still need from the healthcare system today. You must become a partner, with your doctor, in your care. Why is that so? Lack of knowledge about neuropathy, the lack of broadly accepted criteria for diagnosis, confusion, counter-suggestions or attitudes about some, insurance requirements driving the care of doctors, time-limits on doctors…have you ever been to the 5 minute doctor? You talk for 5 seconds, and he cuts you off: “Well what’s happening now?” He already told you he doesn’t want to hear.
Attitudes about neuropathy, like it’s the ‘Trash Disease’, or “nothing can be done; go home”. Now, if you’re 90 years, 95 years old, as one little lady was, you probably don’t want to take some of the medication we have available, so commonsense must rule. But we don’t even have the medical tools for diagnosis before damage is done to the nerves, like preventative medicine and a cure.
Often times the focus on care is the insurance companies and the legal, objective, proof. ‘If I can’t see it, on something that’s objective, it doesn’t happen.’ No matter how much you tell the doctor of subjective information, often times it’s dismissed. But, often, the only information a doctor has, in your early diagnostic journey, is going to be subjective information that you give them. And there is no objective proof. And you may be dismissed. I advise you…find another doctor.
Or, the remitting and relapsing symptoms that may come and go, like a car has a noise… you take it to the Dealer, you tell him it has a noise, he runs it; it doesn’t have the noise! He charges you $300; you go home and, guess what? There’s the noise. Well, that’s what it’s like going to the doctor with a Neuropathy early on. There’s a noise. There’s a pain. There’s something happening. You can’t control your legs or your feet but, the doctor doesn’t hear the noise. And he sends you home.
Now, you do not need to become a Neurologist. But you must learn about what is going on in your body to the best of your ability, working with the doctor in a partnership that is adult to adult and not a dependent, all-trusting child to adult. That’s often easier for the doctor but it won’t help you. In God we trust; everyone else we question. With our new knowledge or thoughts of what our body is telling us.
If the doctor says “all the tests are normal”, what would you say? “Does this mean I do not have Neuropathy?” I assumed it did. If he says “yes”, you may want to find another doctor. All it means is those causes of your Neuropathy that he tested are probably ruled-out but you still have Neuropathy.
Back in 2000, I had a very highly trained Neurologist, teaching, and stated that “you do not have Autonomic Neuropathy”. I accepted that! In spite of what was going on in my body, for years! So, if a doctor dismisses something without testing, could you not ask “are there any tests to be sure?” Testing occurred 4 years later, confirming, I did have those symptoms. Four more years without help until I was tested and, sure enough, there it was. Do you need to become a partner with your doctor? I think so; if you want help.
Books!
There are 3 major books to help you. You heard the story we learned on the farm, “You can lead a horse to water, but you can’t make him drink”…you can lead a man to knowledge, but you can’t make him think. Some of you won’t spend the $45 that it costs for this because “that’s too much money”.
I want to ask you, “How much money did you spend at a doctor that couldn’t help you?” Now, I make nothing from these books; whether you buy them or not, that’s up to you. I have no vested interest. But there are three great books:
THREE MAJOR BOOKS
1. Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop (order from amazon.com) by Dr. Norman Latov, M.D., PhD, written in 2007. Here you will learn, really, what neuropathy is. I’ve used some terms here and, unfortunately, time does not permit me to define them all. You need to get that book. He talks about what it is, what causes it, some things that can be done for it; it’s a great book.
2. You Can Cope with Neuropathy: 365 Tips for Living a Better Life by Marguerite (Mims) Cushing, Neuropathy Patient and Dr. Norman Latov, M.D., PhD is another book that just came out.
I contributed to this book provided editing to focus on the more serious type of neuropathy and worked with her on it; she’s a dear friend in Jacksonville. . You need to get that book. It’s a great book; it has ideas from patients…patients who have walked the walk and talked the talk, and they can tell you what it is that you can do to help you in a million, a million different ways. Get that book.
3. And then the 3rd one… I mentioned Dr. Scott Berman who is a Psychiatrist, an M.D., who has CIDP…same thing I have…except he has not responded to IVIg treatment and still suffers. He wrote a book titled (order from amazon.com) Peripheral Neuropathy: How to Handle Stress, Disability, Anxiety, Fatigue, Depression, Pain and Relationships.
It is an awesome book. I agree with his book 100%. He says it because he’s been there.
[Read long pause and reflection in mind and spirit…]1. In seeking knowledge, it is very important for the neuropathy patient to understand the limits and the reality of our current knowledge about neuropathy. We have limited tools for diagnosis and limited treatments until research finds more answers and more tools for more treatments.
2. I have had patients call to learn that they are functioning quite well in spite of their neuropathy but, like all of us, want all of the symptoms of neuropathy to stop. While this would be great, this may be an unrealistic goal.
3. Yet, the point is to continue seeking answers and, where there are none, right at that moment, share what you have learned with other neuropathy patients. This is one of the things that kept me going; this is why Mim’s book happened. It is what other patients shared with others; sharing insights and information with other patients is one of the most meaningful things you can do for them and for yourself.
The Importance of a Patient Support System
Knowledge is important for getting help. And part of knowledge is the importance of a patient’s support system. There are some things you need to ask patients, not doctors, because patients are going to know; you may not. And the support group can be very helpful in that regard. Before I tell you another story, let me share several facts.
After 41 years with neuropathy, you will note I am alive…a little beaten, but I am alive. It is more likely you will die with neuropathy than from it, except, in one case, for me and others who have autonomic neuropathy and you stop breathing…that tends to make living a little difficult.
The same medical system that failed me…failed me for so many years…also provided the solution to treating my polyneuropathy, in 2004 as a result of research. So I need you to keep that in mind. Sometimes I’m not very kind to doctors; they haven’t been very kind to me. But a few have. And I want you to know that. Certainly there are many types of neuropathy and everyone will not have the same symptoms you will hear [read] described in a moment.
Now let me give you a short version of a story. In 1999, if you can envision, I had lived 31 years with horrible symptoms and, after seeing 204 doctors since 1969 for those symptoms, I discovered some hope with the help of The Neuropathy Association (NOTE: TNA dissolved Dec 2014) … especially in their newsletters where patients described their symptoms and doctors confirmed it was neuropathy. And this actually happened by a doctor, Mohamed Noshi, who actually listened to me. He wasn’t a Neurologist. He was a Gynecologist, (smiles) and a doctor of Internal Medicine. He listened and looked at my history.
After experiencing, during this time, electric shocks all over my entire body, skin so painful you could not touch it. We had to remove the bed sheets from me, it hurt so much. Bone pain in my feet that made walking impossible, the feeling that someone was shoving a screwdriver out the ends of my fingers, digestive problems, urinary problems, chest pains, breathing problems, problems with sweating, periods of temporary paralysis and more, and, in 2000, this wonderful doctor, Mohamed Noshi, looked at all this and he actually listened and heard, and he said “you have Peripheral Neuropathy”. Now can you imagine the sense of relief, after so many years, and trips to the Psychiatrist, and every doctor by default under the sun?
Well, he referred me to the expert and, to make a long story short, he said “Patient is claiming to have something he does not have”; in effect, calling me and my referring doctor “liars”. And this doctor actually had the abnormal nerve conduct test and the EMG from the office next to him. My wife cried… and I crashed. And I needed help, big time. If you, in your journey, need help… don’t be afraid… reach out, find it; it’s there.
I called the only one I knew who to call and that was TNA and left a message for Mary Ann Donovan. Mary Ann founded the Association and she became my Angel in the Night. I left the message of desperation at midnight that night. At midnight, a patient called and listened to my desperate plea… “What do I do?”
And she told me something that I never forgot; how to stay focused on the issue at hand… She said “The doctor is not your problem. The problem is your disease.” That’s important. So I did what I learned in growing up with responsibility while living on a dairy farm in Pennsylvania, and that was “if you do not believe in yourself, no one else will”. I had to believe what my body was telling me, even if a world expert and teacher at a great University didn’t. Was this easy? No. It felt impossible. No one ever said life would be easy, but this advice held me together. And it took me four more years, determination, to find a doctor to help me…and in April 2004, as I explained, I had my day of miracle and I got the infusion. And, in one hour, I stood up out of my wheelchair.
And, slowly, over the many hours to follow and the days to follow, every symptom… all the way back to 1969… improved. So is a patient support system important? You tell me.
The Principle of Anger as Energy
Now I want to call your attention to something I call “The Principle of Anger as Energy”. Suffice it to say that the Neuropathy patient has a LOT to be angry about in this journey and many of them end up with a lot of self-doubt because of the simple lack of affirmation and support that would involve active listening. Too often, the Neuropathy patient lives in a world that can be a nightmare… with difficulty in explaining what is wrong with us, even to ourselves, let alone to those around us…
You’re hurting, you can’t walk, you have pain… and someone says to you “boy, but you look so good”. Well, I got some good news about the anger that this causes and that is that the emotion of anger can be your best friend, when it is seen as energy, driving you to positive helpful thinking. How we think about something determines our feelings, which determines or influences our actions.
Let me give you some examples:
• I think my Neuropathy is going to get worse. So I feel vulnerable, powerless, and fearful. Do you see how the thought determines how you feel? So, I withdraw… My action: Refusing to learn about my condition or to seek help.
• Here’s another: I think my Neuropathy can be helped… How I think. So I feel positive, in charge… My feelings. So I find a good Neuromuscular Neurologist to work with me, and keep searching until I find one who will work with me and can help me.
Remember, how we think about something determines our feelings, which will determine or influence your actions. And, as I recall, Dr. Berman said in his book “Suicide is a permanent solution to a temporary problem”. So, you see, what is temporary is that loss of purpose, that loss of importance, that loss of value; all those things…but you can rediscover those…if you learn that the principle of anger is nothing but energy…available…to you.
The Principle of Adapting
“Lord, teach me to change the things I can change, accept what I cannot change, and the wisdom to know the difference.” It is the strong that learn to adapt. It is the weak who cannot adapt.
Someone once said to me, “How could you give hope and encouragement to someone? You’re in a wheelchair.” After I got over my shock, I responded, “The wheelchair is my strength; not my weakness.”
Have you ever heard someone say, “I won’t use a cane”… Why not? Learning to adapt to your illness and, if you need it, use a cane…so you don’t fall and break your neck. And especially given that most elderly people die from falls than any other cause. Isn’t it a good idea to use a cane and, by the way, children sometimes have to use a cane. They’re not weak… they’re adapting.
Well, how does the prayer go? “Lord, teach me to change the things I can change, accept what I cannot change, and the wisdom to know the difference.”
Change in Roles and Adjustments
Acknowledge your illness has forced a change in roles. There are many changes that we have to make to our roles and many adjustments we have to make. One of the first things Debbie Dawson, a nurse who has neuropathy, said: “You must acknowledge that your illness has forced a change in your roles… at home, on the job, everywhere; what you do, what you did before, what you can do now”…
Debbie is a nurse in Pennsylvania, who suffers from Neuropathy, and she came up with what we call “Debbie’s Changes”:
1. Things I can no longer do (example, power walking).
2. Things I couldn’t do before, but can now (have time to write).
3. Things I do the same as before (sit in the sunroom enjoying the sunsets).
4. Things I can still do, but differently (to the mall using aids).
5. Things I can do differently, just not ready yet (travel).
Lord knows most of us with problems with our legs can’t do power walking. Because she was too busy, she never wrote before. “I always loved sitting in the sunroom enjoying the sunsets and sunrises; I still can do that.” “I can go to the mall, using aides, using my wheelchair, using my cane, or sitting down a lot.” Or like one of those walkers where it has a seat; you flip it down and sit on it. And that suggestion about travel brought me to an experience I had about
Alaska.
Should I Go To Alaska?
• My trip to Alaska was #1: (Surely I can’t do this).
As I thought about that, I thought it was something I cannot do: “I can’t go to Alaska; surely I can’t do this”…then the more I thought about it, in retrospect actually, I thought “well…I really am afraid” of making the adjustments or what it will mean I’ll have to do if I go to Alaska. So, all of a sudden now, my can’t became
• DEBBIE’S #5: THINGS I CAN DO DIFFERENTLY, JUST NOT READY YET.
I realized I was afraid of the needed adjustments I would have to make so can’t became can do differently, just not ready yet. (or I haven’t figured it out yet)
Now someone said “I wanted to go to China and the brochure said it requires lots of walking and stamina”…well, I crossed off China. Now let’s be realistic. But Alaska, let’s think about that…
Well, it came to WE’RE GOING TO ALASKA!
• I thought of what I would do differently and, all of a sudden, my can’t (or wasn’t ready) became a #4: I can do it, I just got to do it differently. What a great discovery. And then, I realized that I had time to do it. So now my can’t was a #2: I have the time.
• In the middle of that trip, my experience became a million #3s, while I watched the beauty of Alaska that was all around me. Every look was a work of art, and I sat there playing cards in Chicken, Alaska, with my friends. Awesome! It’s adjustment and, by the way, what is the name of the bird by which Chicken, Alaska should have been named, but the locals could not spell or pronounce? I can’t pronounce it either: Ptarmigan. I found that in the online dictionary. Awesome. Simple things.
The Principle of Focusing on Today
This principle is actually something I discovered in Murphy, NC. But what is the point? So many patients ask me, “Am I going to get worse?”…don’t know…“Will I be crippled?”…don’t know…”Will I stop breathing?”…don’t know… It’s like my brother who asked his doctor “Am I going to die?” and he said “yes, but not today”…
What is the point? What can you change by a focus on ‘what if’ in the fears of an illness? I’m telling you to resist the temptation to dwell here.
“What if my condition gets worse?” It will leave you feeling helpless, vulnerable, weak, defeated, and hopeless. How many of you dwell on your fears, worst fears, of what might happen?
So how do we change that? It’s called the “Miracle for Today”; we need to focus on today. I have a little article I wrote – you can have a copy if you contact me – on the Miracle for Today. I’ll tell you the whole story about that trip in the snow, but only if you’re not bored by hearing about grand-children.
How do I focus on today?
1. We focus on today by setting realistic goals of what you can do TODAY.
2. Keeping “to do” lists. Learned that in my job in the military. To-Do lists. What I don’t get done, I don’t moan about it; I put it on the list for tomorrow and, eventually, if it’s on there too long, I cross it off and forget it. It’s like keeping an “In-box” of things you’ll get to later…forget it; you’ll never get to it later.
3. Increasing life’s meaning by helping others with their neuropathy. That’s what I’m doing here. If I help one person here, it’ll be worth it. Well, maybe two
4. Adjusting your daily schedule to your new physical limits. In the afternoon, I’m shot. That’s why I’m doing this in the morning; I schedule lectures in the morning. By 2:00, I either have to lay down or I’m going to fall over. Good news is I recover quickly even if I don’t go to sleep; don’t know why but I do. Adjust your daily schedule to your new physical limits.
5. Enjoy the simple things of life that give you a sense of peace and meaning. One of the greatest joys of my life is walking my dogs in the morning. I use my scooter; so what! Now, a little better in the winter…when it’s cool, but I so much enjoy those days, those moments, and listening to the birds, and watching the dogs walk… Here’s what I’ve also discovered:
The greatest opportunities for personal growth, opportunities for new meaning, and productivity, occur when we boldly face the major crises in our lives, and not when “all is well with my soul.” Because I usually go to sleep then; hope you’re still awake
Support from Your Doctor
I said before that coping is a lot easier when you have a doctor who’s helping you. That is true. Affirmation from a doctor is critical; affirmation from other patients who have it, boy that really helps, especially when you don’t have it (affirmation) from a doctor. But (affirmation comes when you ) finally getting a doctor to actively listen to you, look at your history, treat not only the pain but work on getting a diagnosis by ruling out all that’s not wrong, and then maybe finding something you can do and if not, looking at Mim’s book of all the tricks and trades that patients have learned to do.
GOD?
Doctors are highly trained specialists who are human beings prone to all that is involved in the human experience. Treating a doctor as a God is unfair to the doctor; it is unfair to you. For the job of God is already taken. No matter how some of them behave or what you as a patient want and maybe you want a God, they are highly skilled, perhaps able to help you, but not Gods.
PARTNERSHIP (2015 NOTE: See Doctor Patient Relationships article in the Neuropathy Journal)
A good doctor-patient partnership (relationship) is critical to diagnosis and treatment when you’re working with a neuropathy. It takes patience and understanding on both the part of the doctor and the patient. As Dr. Daniel Menkes, (former) Neurologist, University of Tennessee, said so well, “This relationship must be based on mutual trust, respect, and realistic expectations.” If a doctor can’t meet what you hoped to have, maybe there’s someone else he could refer you to; ask him; go to them; see!
DOCTOR’S THINKING
Another favorite person I have is Dr. Groopman, who teaches at Harvard. He talks about helping doctors think! You, the patient, can help the doctor think. Have you ever been to that 18 second doctor; (they) cut you off (after ) 18 seconds? “What’s happening now” (the doctor wants to know) after (18 seconds of) you’re talking. (Here the doctor implies)“well that’s all okay but I want to know what’s happening right now”…and that may not be important (as your history)! They (doctors) cannot help the neuropathy patient if they don’t take your (medical) history serious and what you’re saying (about that history)… so learn to ask questions that help the doctor. (See his book on How Doctors Think from amazon.com)
Learn how to describe your pain and symptoms on a pain scale, 1 to 10. Some patients say “it’s a 10”; it’s got be a 10!” Well, a 10 is you’re passed out; you may not even know it was a 10. But I understand what a patient is saying…you’re saying “no one has listened to me and believed me…that I am hurting”…that’s what you’re really saying when you say it’s got to be over a 10, or 20, or 30…but that’s not helpful to the doctor. What’s helpful is you learn that number 1 is just a nuisance and number 10 you passed out; number 5 is hard to go to work. Sometimes, as a neuropathy patient, you must describe it in terms of a range… “Well, it goes from 3 to 6”, 1 to 2, 5 to 7… use it for symptoms too!
And it’s AMAZING the more you practice that and forget, try to forget, about whether someone is going to believe you or not. Push that aside for a second and just get in touch with what’s going on. Right now my legs are burning at a number 2 to 3. The longer I sit here, I’ll get worse There are times when, if I try to exercise or walk too far, my waist, from waist down, turns to cement; numb cement. And I’m off to a hospital. Well, that’s a number 7 or 8. You see what I mean; you get my drift.
Learn to help the doctor. Don’t sit there. Be a participant and a partner.
MEDICAL HISTORY
Your medical history as a neuropathy patient is not important, it is CRITICAL. It is from your history: when it started, the onset, the location in your body, the types of symptoms…the pains; there are so many different types of pains, so many different types of symptoms…how long they lasted, etc… those things and what other doctors said…, that may (or may not ) be important, I don’t know…but your test results, other tests, ALL of that is critical if that doctor’s going to help you.
FOCUS ON THE PAST
What has been happening over a period of time is possibly more important than what is happening right now. If you’re like that old car, remember the old car with the noise, you took it to the mechanic, “Well, it’s not making any noise”…that’s going to happen to you with neuropathy; “You got reflexes now”…some of them (doctors) don’t know that sometimes the reflexes are diminished and sometimes they’re absent and sometimes they’re not! Boy, that’s helpful to the doctor, isn’t it? How’s he going to diagnose you from something like that?
WHO CAN ANSWER YOUR QUESTION BEST?
Many of the practical things that help us in our living are discovered by other patients, so why not ask them? When you think of support from the doctor, it’s medical, but often times who can answer your question the best in terms of what to do, how to live with this stuff, is someone like Mims Cushing, or another patient, or a Mary Ann Donovan (God Bless her)…so why not ask them?
Support from Family and Friends
Another critical component and most of us have the tendency to do what I call DUMPING. Someone asks “How are you?” and you tell ‘em the whole nine-yards, and the person is saying ‘whoa, whoa…I don’t want to hear all that’ [read body language].
A lady in Wal-Mart came up to me one day and she says “May I help you, sir?” and I wanted to kid with her a little bit and I says “Lady, you have no idea” and I went on and on how I needed $100,000 and on and on and on, and finally she looked at me in shock and said “you’re kidding, aren’t cha?” and I said “Yeah” [read totally cracking-up laughter] and we had a good laugh; humor in Wal-Mart; humor.
What is a solution to our…sometimes, if we’re not getting help…dumping on everybody?
Well, some of the solutions are share carefully selected information based on:
• Their ability to comprehend: You have a child, who wants to know what’s wrong, are you going to explain the Peripheral Nervous System? I don’t think so. Probably “Daddy just doesn’t feel 100% today” will suffice. The ability of the person to comprehend or help you. The mechanic at the garage probably can’t help you with your neuropathy. Another patient may, if they are willing…
• Their willingness to listen and hear: If someone says [read body language above] or walk away or ‘go off in their mind’ [read exit-stage left] and you know it, they don’t want to hear; they’re not interested. But if someone walks up and says “boy/wow…you know…I have something like that…tell me about it”, you just had an invitation…go slowly…
• Your realistic expectations as to why you are asking or telling this and what you are sharing. Are they realistic? You think about that; look at my notes; you’ll find what I mean by that…
Support at the Work Place
Okay, you have support from the doctor, you have support from the family, and now what about support at the work place? This is a little more difficult. And it can best be explained by a song that many of you remember: Kenny Rogers sang…I think it goes something like “Know when to hold ‘em, know when to fold ‘em, and know when to run”.
In other words, you got to walk a little bit softly at the work place.
(What you do,) depends upon the CLIMATE at your place of work: (Is the work place a legal contract, or a family atmosphere or a combination of both?
Because it depends all on the atmosphere… if you have (just a) family, (just) a job, (or what is the) atmosphere, (will determine what you do). (If a family that you work with) they’re going to know anyway but, even then…(be careful). if you have a Legal Contract where you’re getting paid to do something and you can’t do it, maybe go to the Human Resources Department and talk to them…and sometimes it’s a combination of all three…walk carefully.
But, after saying that, let’s talk a little bit about Safety Issues.
Look, folks, if you drive a 10 ton forklift when you can’t feel your feet or control your legs, is it a good idea to make some adjustments on what you do at work? I think so…or maybe you put the pin in that bomb right before it explodes, and you can’t feel your hands…or maybe you’re flying a commercial aircraft with a loss of stamina like I get and total exhaustion happens every afternoon, daily, sometimes unexpectedly, and you’re flying an airplane…? Safety is an important issue here.
Changing Work Roles and Patterns can apply to volunteer work also. You need to look at that: what can I do to change…and there are laws here to protect you with some of those changes within reason.
Principles to Guide you at the Workplace
• Need to know
• Keep it simple and short
• Ask that what you share be treated with sensitivity
• Accept the reality: your illness has an impact
• Consider speaking to someone in the Human Relations Department (Benefits, Rights, and other issues regarding illness or disability)
Our World
Many people with a chronic illness and neuropathy sometimes have illusions about living in a perfect world unlike the world that you live in. Well, in a wonderful town called PERFECTVILLE, everything is perfect, but for everything else… there is available knowledge and support for patients with a chronic neuropathy from many neuropathy organizations and from patients who know our world best.
You will find in these places patients who have discovered hope, where practical ideas are shared without fear, as we learn together how to live better with neuropathy, without shame or apology.
A patient’s secret place of peace…do you have such a place? Go there often! It is so important for you to find a place that makes you feel the best and at peace, at one. For some, it’s the seashore; for others, it may be the desert… I was in the desert in northern New Mexico; it was beautiful. Others, it’s a water fountain, …or maybe a quiet walk in the park or maybe it’s playing with grandchildren, doing something active; wherever it is, this place is important when coping with a chronic illness.
For me, some may say ‘unfortunately’, my secret place is in the mountains in the snow. It’s my secret place; I can go there by car or by my dreams or imagination and, in January… as I began this, I said I went there January ‘08 with my grandchildren… I love the smell of the cool air, the sounds of the mountains, the sounds of the wind, and the sounds of the trees as they talk to me… watching children excited, catching those snowflakes, only to watch them melt quickly, kids using trays from the car to slide down a handicap ramp…that’s what trays are for, aren’t they? Isn’t that what trays are for?
My dog, Bear, and his state of joy in the snow, attempting to run only to fall from his weak legs, but, never mind, he brings his leg up and he starts licking that ball of snow that’s between his toes… the laughter of family, campfire, where my sneaker did catch on fire and the kids put it out with snow, a warm log cabin, and games phase 10 into the middle of the night, and this experience inspired me to write a poem…speaking of simple joys…beyond just survival of limits…and today I share this gift written in a Murphy, North Carolina log cabin in a moment from my heart and, as I read the poem, close your eyes for a second and go there…or to your place of peace…go there often for in this place is where you will discover many of the 365 ideas to help you in Mim’s book Ways to Live a Better Life with a Chronic Illness.
When is it Enough? by Lt.Col. Eugene B. Richardson USA (Retired)
When you are in the mountains
And the mountains
through pines whisper to the heart
Speaking in loud silence,
hushing, forty years of neuropathy
Mountains whispering to us,
in the language of a cool rushing stream
Snowflakes in a child’s hand,
lifting you from body limits
Fragile flakes,
ignoriing childhood excitement,
Silently disappearing
While sliding down the ramp
beyond handicapped limitations
“Look Poppie, look at me,
a million miles an hour, I slide”
With smells of life reaching
the deepest soul of my tired lungs
And Bear, my aging canine friend
of fourteen years
Smiling, lifting his head
into gentle breezes
ignoring his legs that fail to hold
Yet grasping the primative
joy of living and life: together
He in his doggie wheelchair,
Poppie in his scooter
Intoxicated by crystal clear laughter
of wife, children, and family
For when you are in the mountains
that whisper and smell of life
Then truly, that is enough.
I now conclude with messages from Bear and Hailey Wiggles… who tell us about the important role pets can play in our coping skills…we do so in music, to remind us the important role good music plays in our ability to cope with chronic illness…
So I ask you to read each slide as it comes on the screen, carefully… as we allow the moment to inspire us to find ways…to inspire us to find courage…the hope, the promise, to cope, with our neuropathy…and perhaps find a new purpose, and a new meaning, for our lives…even while chronically ill…
A MESSAGE FROM BEAR
“Please, if you love pets like my Dad and Mom, consider adopting one at your local Humane Society. Maybe you will find one like the brown dog I left behind. Her name is Hailey Wiggles, a five year old abused boxer I encourage Mom and Dad to adopt before moving to doggie heaven. I know she has helped Mom and Dad heal and they all love each other very much. Now I will say so long, my job is done, for I taught Dad all he knows about COPING with this stuff called Peripheral Neuropathy.”
“So remember to bark at the garbage truck and don’t forget to smell the breeze!”
August 1, 1994 – February 24, 2009
One-hundred nine dog years of Learning, Adapting,
Laughing, Discovering, Breathing,
And ENJOYING my secret place under the tree.
Bear Beethoven Richardson
OKAY I’M IN CHARGE – NOW THAT THE BLACK DOG IS GONE – LISTEN UP!
The medical or coping information provided by my Dad okay, okay, with Bear’s help, in the absence of a visit to your Veterinarian (O, sorry, you are JUST a human, I meant to say your physician), must be considered as an educational service only. This presentation is not designed to replace a physician’s independent judgment about the appropriateness or risks of a procedure or therapy for a given patient. Our purpose is to provide you with information that will help you make your own healthcare decisions. Hailey Wiggles Richardson
P.S. It was my idea to add the music at the end, nice touch for coping, huh?
2014 IMPORTANT UPDATES FOR DVD:
LIFE is sometimes full of joy and grief. That is life. The important point is to live life with joy in every way possible, grasping each moment and filling life with purpose to the fullest extent possible. Then when we lose something, health or a loved one, we walk and work ourselves through the pain of grief to the other side, facing the pain of loss head on, and at the other end of the work of grief, making new memories and creating new moments. This is living a purpose filled life driven by your passion, as you discover a new purpose, new meanings, even when chronically ill! Why do I tell you this in 2013?
HAILEY WIGGLES: On March 27, 2013, Col Gene and his wife Joyce lost their precious Hailey Wiggles after she struggled for nine months with cancer. This heart breaking loss challenged every emotional bone in their bodies as they fought through the extreme pain of the grief of this loss. She was loved by everyone who met her and she even would raise her paw to shake hands when she met people! In her last moments she even ‘wiggled’ her tail as if to say thanks. We fully believe we shall see her again in that special place in heaven and today is known as Rainbow Bridge. Click here for Rainbow Bridge:
ENTER STAGE RIGHT KELLY GIRL: Then on September 7, 2013 we adopted a nine year old Fawn Boxer named Kelly Girl (She lost her Mom and Dad to cancer.) who not only has the face of Hailey Wiggles, but the personality also! Yes, she is an older girl, but for us she is a gift as it took only two days of adjustments for Rocky and Kelly to become best of friends and to play ‘exactly’ in the same way as Rocky played with Hailey Wiggles! Kelly Girl is a gift and is helping us and Rocky with the loss of Hailey Wiggles in ways no one would know. However long we have with Kelly Girl, will be worth every moment we have together. By the way, unlike Hailey Wiggles and Rocky Bones who were starved and underweight when we adopted them, Kelly Girl was 112 lbs., but on her diet and walking routine is now down to a beautiful 96 lbs. walking a mile a day with Dad on his scooter and she even has extra wiggle and life! Yet the JOY was to be short lived as we lost Kelly Girl to cancer on June 3, 2014 and our hearts break but the joy we shared is ours forever.
ROCKY BONES: We had adopted another Brindle Boxer named Rocky Bones shortly after doing the DVD. (He had been starved so his bones showed.) Rocky and Hailey became BEST friends for many years after losing Bear. When Hailey was gone Rocky missed her and grieved with us. They had played every day in the back yard, became best friends and the empty space for Rocky was as real as for us. Then Kelly Girl filled the void for a short nine months (2013 to 2014) while expert trainers told us that Rocky would never accept another dog. Note with patience’s, it only took 3 days for Rocky and Kelly Girl to be best friends! Now with Kelly Girl gone to the Rainbow Bridge, we look for another to help him with living just as we seek those who help and support us with living life to its fullest no matter our situation.
BELLA GIRL: Then in September 2015 we found our precious Bella in the Broward County Pound! Of all places, in lock down where her pervious owner left her. I rushed to the pound, took one look at each other, instant adoption. We belonged together. Three year old Fawn who loves to hug and hug and hug. She is now Rocky’s best friend and they play and box in the back yard everyday. You would not believe the ‘moves’ she puts on as they box.
WHY THE REVISION: WHEN we produced the DVD in 2010, we were linked primarily to The Neuropathy Association as that was the foundation for my experience with getting help. However, we have since discovered that there are many neuropathy organizations helping patients and in the spirit of a coalition and the value we place on helping patients, the Neuropathy Support Network has completed this 2014 revision which is inclusive of all neuropathy organizations helping patients. One of the biggest challenges is getting leaders of power to work together! Unfortunately The Neuropathy Association closed there doors on Dec 31, 2014. So, we pray that this revision will encourage all neuropathy organizations to use the DVD to help patients and provide support that will encourage them to work together with one mission in mind, “the neuropathy patients.”
PRODUCTION INFORMATION
Afterhours MUSIC Hal S. Batt, Executive Producer 1959 N.E. 149th Street, N. Miami, FL 33181 (305) 947-6841 www.afterhoursmusicinc.com
Copyright 2010 – 2015 Network for Neuropathy Support, Inc. dba Neuropathy Support Network Eugene B. Richardson, President 645 NE 19TH Avenue, Fort Lauderdale, FL 33304 (954) 328-1630 www.NeuropathySupportNetwork.org and E Mail to: gene@NeuropathySupportNetwork.org All Public and Private Educational Use Permitted.
GRAPHICS AND DESIGN / Co-Producer, David Morrow, Senior Vice President NSN
MUSIC Writer/Executive Producer/Publisher: Hal S. Batt, Owner/Operator, Afterhours Music, Inc., 1959 NE 149TH Street, North Miami, FL and Writers: You Raised Me Up by Brendan Graham, Rolf Lovland; Publishers: Universal (UK) and Peer Music, by permission.
Bruce Weeden, Afterhours Music, Inc., Video Editor, Motion Graphic Sequences, DVD Authoring, Power Point Conversion, and Slide Creation. Bgw56@comcast.net
David Morrow, Media Solutions, a Sea-Cam, Inc. Company. Cover/DVD Design and Graphics, Web site design. www.davidmorrow.tv
Bruce Merwin, Videographer on location Miami, Florida. Bruce@merwin.com
William G. O’Connell, Creative Consultant, on location in Miami, FL
Scott Berman, MD Psychiatrist, DVD Review, Bethlehem, PA
Alan Berger, MD FAAN, Neurologist/Professor, University of Florida, Jacksonville, Active support NSN seminar 2009.
Thomas Brannagan III, FAAN, Neurologist/Professor, Columbia University, NYC, Support and Introduction to 2010 version.
2015 Board of Directors, Network for Neuropathy Support, Inc., dba Neuropathy Support Network:
Eugene B Richardson, BA, M.Div., Ed.M., MS, President
David Morrow, Senior Vice President/Director
Scott Berman MD, Director
Jessica Benjamin, MS, Director
Linda McIntosh, RN, Director
Hal Batt, AA, Member
Nanette Batt, Member
Thank you – from Neuropathy patients who will find affirmation, help, and hope because you cared!
Order your free copy of the “Coping with Chronic Neuropathy” DVD
