Today's post from neuropathyjournal.org (see link below) is the story of one man's fight to get his neuropathy and the cause of that neuropathy, recognised both in the courts and by the doctors who treated him. Since he began to publicly fight for recognition of Agent Orange as being a direct cause of nerve damage, many others have also come forward and the authorities have been forced to acknowledge a painful fact. Of course, the words 'Vietnam, veterans, chemical warfare and disease as a result', are highly sensitive in certain circles but in the end the truth will always out. It shows us all that although we share the same damage to our nervous systems and resulting pain and symptoms, the journey to get there is enormously varied. The point is that, irrespective of the cause, be it HIV, alcoholism, Agent Orange, diabetes or any of the other 100 causes of neuropathy, we all deserve the same treatment and 100% effort of our doctors and social support services. The fact that we don't all get equal treatment shows just how far we have to go. We need to speak up individually and advocate, if we feel we're being ignored, or denied appropriate medical treatment or social support.
By LtCol Eugene B Richardson, USA (Retired) BA, MDiv, EdM, MS4
His nightmare began in 1969 – one year after leaving the Vietnam War. Symptoms of autonomic and polyneuropathy neuropathy affected his breathing with upper body paralysis that brought him to his knees and affected other parts of his body; mysterious chest pains, electric shocks, painful skin, physical exhaustion, unexplained silent tachycardia, urinary and digestive problems all contributing to his nightmare. It would not be until 35 years later in 2004, that a diagnosis was provided and treatment began to stop the damage and provide some relief.
An Army officer, he struggled for 18 years of his Army career with severe electric shocks that began, uncharacteristically, in his upper body. Occasionally the symptoms would disappear and he would think the nightmare was over but it was not to be – the cycle would always begin again. The loss of stamina and periods of total exhaustion – the perception by others that it must be psychological – left him unable to continue. His distinguished military career came to a screaming halt. With medical records that contain many negative comments about his condition and his cycle of pain and symptoms, he retired from the Army in 1987. His dream was over and he hoped his nightmare would go away!
Still reeling from the circumstances of his retirement, he began working in operations for retirement homes and services for the aging in Florida. For 14 years he held his head high, managed to keep smiling and performing his work with distinction, becoming a VP while avoiding those who felt his continuing cycle of symptoms was due to his inability to ‘handle stress’. He even had forced temporary salary and time reductions as punishment for being hospitalized with heart problems so that he would learn how to “not work so hard.”
By 1999, his condition made breathing and speaking simultaneously very difficult; his skin was so sensitive that he would scream when sheets or clothing touched him. He built a PVC frame around his body so he could sleep. Walking became difficult due to the transient paralysis of his legs and he used a wheelchair off and on; it was difficult to stand because of the bone pain and sometimes too painful to even sit. Some doctors even made fun of the fact he carried a pillow to sit on or made fun of his using a cane, because all tests were “normal.”
For thirty five years his doctors kept saying, “All tests are normal”. The electric shocks slowly spread from his left arm and scapula to his other arm, his feet, legs, and eventually to every part of his body – decades of torture. Eventually, the periods of temporary paralysis and other major system failures made working impossible; he was forced to retire again in 2000. He was convinced, “I had descended into hell” and yet most of the time he kept smiling as he struggled to function daily.
Objective tests in 2000 confirmed significant damage to his peripheral nervous system even though, unbelievably, some experts were still denying the reality of his symptoms. He felt medically isolated and psychologically devastated when his decade’s long history and the objective tests were ignored by an expert. “Not all of these symptoms are neuropathy”, said one expert.
Then in April 2004 based on a medical article by Norman Latov MD PhD (Columbia University, New York) with contributions by Alan Berger MD (University of Florida, Jacksonville) and Walter Bradley MD (University of Miami) plus 18 other neurologists, he began receiving gamma globulin treatments (IVIg) and has had positive results. Every symptom back to 1969 responded eventually in some way to the infusion. Today he receives this infusion every twenty one days.
Then as if this was not enough, many mistakes were made on the initial attempts at infusion (too fast, to high liquid volume, need for Lasix as kidneys could not handle the fluid volume) that for nine months mistakes almost cost him his life. Yet he responded to the treatment and eventually all this was adjusted after nine months of trial and error and a change of neurologists’ as well as two changes in the infusion site following a trip to the emergency room when the infusion was refused by a hospital and delayed for 42 days. He almost did not make it and was rushed to the emergency room at another hospital where his wife found IVIg.
Then Medicare refused to pay for the treatment, as they stated that it was medically unnecessary and to this day getting his infusion and the product that works for him, is a challenge. In 2009 he was forced to travel two and a half hours to get the infusion at the only location in Florida who would give it to him.
In 2010 he had no choice but to move to Fort Lauderdale to reduce his travel time. He has testified before Congressional Representatives on this issue and helped in the filming of a documentary, “Dying for Help”.
By 2005 his extensive medical history and continued testing confirmed autonomic neuropathy – challenging decades of denial by experts in the medical system who ignored four other doctors who stated that symptoms were present. In 2007, his neurologists told him that he had small and large fiber neuropathy, motor, sensory and autonomic. With all other causes of his neuropathy ruled out by medical testing, he was told in 2009 by his treating Neurologist that there was an “extremely high probability that his current diagnosis and medical condition is due to a toxic polyneuropathy because of exposure to Agent Orange in Vietnam”. He wants to know what took them so long.
On January 7, 2010, Veterans Affairs finally confirmed a total permanent service connected disability using half of his diagnosis. Lt. Col Eugene Richardson, USA Retired, has spent 45 years living, and coping, with the symptoms of his progressive neuropathy and the devastation from Agent Orange.
In 2013 the Veterans Affairs Administration (VA) began recognizing that exposure to Agent Orange (AO) causes Chronic Peripheral Neuropathy. However the Institute of Medicine (IOM) added a requirement of early on-set to connect the condition with AO exposure. Yet during the decades of the Vietnam War and after, even until 2004 clinical diagnosis and recognition of the symptoms of Peripheral Neuropathy are just now being recognized and diagnosis and treatment are difficult.
For decades with the symptoms clearly recorded in LTC Richardson’s medical records, the VA denied all of this information for six years, relating it to other conditions and then repeated misstatements of fact four times about the clear statements in his service medical records. Why?
(Note: Recommend that Veterans include a copy of this document showing the bogus nature of the early onset requirement. Reference is made to: “One Man’s Journey with Neuropathy” the experience of LtCol Eugene B Richardson, USA (Retired) with currently 100% VA disability due to Chronic Neuropathy after service in Vietnam in 1967-68.)
In 2014 by medical testing at the VA Hospital in Miami, it was again confirmed that he had been dealing with a severe motor and sensory neuropathy with Autonomic symptoms with damage to both the axon and myelin resulting in his severe disabilities.
After waiting for three years for a VA Hearing before an appeals Judge regarding the effective date of his disability, he appeared before this Judge on July 8, 2015. At the root of his case was the fact that he never received the 2007 document until it was too late to respond and the fact that the VA had made four misstatements of fact that his Neurologist pointed out in an affidavit in 2008.
Before going into the hearing he was told that the VA would be forced to go against their own laws to approve his appeal! He had not appealed the 2007 Statement of the Case in time. Not very encouraging. Physically and emotionally exhausted by the long trip to Fort Lauderdale to Tampa and the reliving in this process the decades of the emotional pain of his disease and raw memories of the war, exhausted he almost quite. But then found the strength to go before the Judge determined to at least have his say. To his surprise the Judge was very supportive and understanding! To make a long story short, she reviewed the Statement of the Case that the VA sent in 2007, noting that it had been sent to an incorrect address! In addition the Clear and Unmistakable Errors (CUE) made by the VA at the first response to his claim in 2006 were recognized. Mysteries solved and on August 25, 2015, over ten years since filling the claim, the effective date of the claim was set at the original date of filing in 2005 for the 100% VA recognized service connected disability!
This case is an example of the false premise on which current VA law of ‘early onset’ is based claiming that “a neuropathy could have been diagnosed and recognized at the 10% disabling level during the years during and following the Vietnam War. In this case there was clear evidence of the symptoms in his service medical record, but they were never recognized as related to neuropathy and in the initial rejection of the claim in 2006, the VA even misquoted the information from his medical records denying that it was in fact in the records in the official VA documents! You tell me what is wrong.
Same Lesson Learned: “Veterans must never give up in the face of often unhelpful VA laws and those who were praying for me, may never know how this helped, for the strength I found came from outside myself on this day and it was the same strength found in this decades long journey!”
Lt. Col. Richardson is a graduate of the Command and General Staff College and attended the U.S. Army War College for senior officers. He holds a Bachelors of Arts in Philosophy, Bachelors of Divinity and a Masters of Divinity in Pastoral Care and Counseling,, a Masters of Education in Adult Education, a Masters of Science in Management and a Master of Science in Counseling. With decades of experience as an educator, counselor, and pastor, he uses his vast knowledge and experience to provide straight answers and insight to those suffering with any form of neuropathy.
Before he became too disabled to continue, he led three neuropathy support groups in Florida and taught a seminar, “Coping with Chronic Neuropathy”, which is endorsed by board certified neurologists at major universities. This seminar became a DVD production produced by professional volunteers in November 2010 at Afterhours Music, Inc. of North Miami, Florida. It is distributed FREE of charge using donated funds through the Network for Neuropathy Support, Inc., dba Neuropathy Support Network, a non-profit Florida Corporation.
In 2014 the DVD was revised to insure ALL neuropathy organizations can make it available to ALL neuropathy patients.
In June 2010 he received the annual national award in recognition of his work in helping other neuropathy patients and veterans from the Neuropathy Action Foundation, Inc. of Scottsdale, AZ.
Besides providing daily volunteer advocacy, information and counseling to neuropathy patients via the internet, in March 2011 between resting to recover from his daily bouts with exhaustion, he launched a website for neuropathy patients called the Neuropathy Support Network. In 2015 with the help of neuropathy patient David Morrow, he launched a companion linked website called the Neuropathy Journal. The website contains volumes of information for patients and professionals and the content is reviewed and approved by medical professionals.
How does he view all of this fun? How does he cope with the few ‘professionals’ who have refused to note or provide information on the DVD or even out of jealousy attacked his work for neuropathy patients? He is making lemonade out of the lemons of life as Mom and Dad taught me and God as His soldier has ordered me to do.
SPECIAL QUESTION: What was the chance that David Morrow, now our Senior Vice President of the NSN, a Cancer patient with the right skills and I, would meet on that day and hour, in the infusion room of Imperial Point Medical Center Pompano Beach, Florida, in that situation when he needed to talk about his Neuropathy and I needed someone to help with the DVD production “Coping with Chronic Neuropathy” . I knew nothing about distribution and needed someone who could design our website (for free)! I was a counselor and teacher and I knew nothing about all of these challenges. About a trillion to one? The Bible says: “All things work together for good to them that love God”. Someone bigger than us both had a hand in this meeting. As a patient with a Chronic illness, never stop looking for opportunities to fight back and bring new meaning into your life through your illness. View Patients Helping Patients.
NOTE: Copyright 2010-15 Network For Neuropathy Support, Inc. dba Neuropathy Support Network.. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author. Contact him at E-mail: gene@neuropathysupportnetwork.org
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.
About the Author
Col Richardson has suffered with severe neuropathy for over 45 years. A 27 year military veteran and veteran of the Vietnam War, he was diagnosed with a progressive chronic peripheral neuropathy resulting in severe disability. This diagnosis has been confirmed as due to exposure to Agent Orange. It was not until 2010, 42 years after his exposure to Agent Orange, that his diagnosis was recognized by Veterans Affairs as service connected.
https://neuropathyjournal.org/one-mans-journey-with-neuropathy-2/
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