One Man’s Journey with Neuropathy

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.

An Army officer, he struggled for 18 years 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 two 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 from The Neuropathy Association lead by Dr. Norman Latov MD (Columbia University, New York) with contributions by Dr. Alan Berger MD (University of Florida, Jacksonville) and Dr. 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 using FDA product approved for CIDP called Gamunex C Liquid 10%. Without this infusion his nightmare of symptoms returns and otherwise he will be unable to walk at all or breathe due to damage to muscles in the chest area.

Then as if this was not enough, many mistakes were made on the initial attempts at infusion using a cheaper product, infused too fast, to high liquid volume, need for Lasix as kidneys could not handle the fluid volume resulting congestive heart failure. For nine months doctors ignored the problem and this almost cost him his life with repeated trips to the emergency room.  When a better product was given with Lasix IV pre and post infusion, he responded to the treatment. Eventually all this was adjusted after nine months of trial and error plus a change of Neurologists as well as two changes in the infusion sites. Believe it or not in March 2005, he ended up critically ill in the emergency room when the infusion was refused by a hospital, resulting in a delay of 42 days!

Then Medicare refused to pay for the treatment, as they stated that it was medically unnecessary. 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. Following these years of struggle, in 2016 the getting the infusion is less a challenge as progress in medical knowledge has increased.

He has testified before Congressional Representatives on this issue and is helping with the filming of the documentary, “Dying for Help” being produced by the Alliance for Plasma Therapy in hopes of resolving these issues for all patients in need of IVIg therapy.

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”. Only in 2015 was it acknowledged that Agent Blue that was used had heavy dosages of arsenic, a neurotoxin of first order. He now knew why the animals in Vietnam were dying around him in 1968. He still wants to know what took leaders so long.

In May 2009, he shared some facts about Chronic Neuropathy due to Agent Orange exposure before the Fort Lauderdale Mayor and City Commission and to hear this short address go to http://neuropathysupportnetwork.org/blog/ for a video clip of his comments.

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 toxins used in Vietnam such as Agent Orange and Agent Blue.

Following four decades of denial, it was no surprise to him that in 2012, the Veterans Affairs Administration finally recognized Chronic Peripheral Neuropathy as presumptively due to exposure to Agent Orange.  Yet the VA still requires “early onset” diagnoses within one year of exposure during a time when the medical community was unable to diagnose or even recognize neuropathy!

During the decades of the Vietnam War and after, even until 2014 clinical diagnosis and recognition of the symptoms of PN 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 used misstatement of facts four times about the clear statements in his medical records.

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.

In 2015, ten years following the submission of his claim for service connection of his Peripheral Neuropathy, the case was heard by the Board of Veteran Appeals Judge in St. Petersburg, FL. A favorable decision was granted, with recognition of the Clear and Unmistakable Errors (CUE) made by the VA at the first response to his claim in 2006 and found that the letter that transmitted the Statement of Case (SOC) was mailed to the wrong address. The Judge corrected the effective date of his 100% service connected disability back to the original date of filing in 2005 based both upon the CUE’s and the failure to send the SOC to the veteran.

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 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 in his medical records in the official VA documents.

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; a Master of Divinity in Pastoral Care and Counseling; a Master of Science in Management; a Master of Education in Adult Education; 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 counseling to neuropathy patients via phone, letter and the internet, in March 2011 between resting to recover from his daily bouts with exhaustion, he launched a website for neuropathy patients at www.neuropathysupportnetwork.org and has added another website www.neuropathyjournal.org.  The website contains volumes of information for patients and professionals and the content is reviewed and approved by medical professionals.

In 2014 he launched a website for Neuropathy Support Group Leaders that each individual support group can use as a resource for meetings, outreach, and announcements and as a resource of information for their work as group leaders.

How does he view all of this fun? Having grown up on a dairy farm in Pennsylvania he learned the values of hard work, creative problem solving and determination early in life. As an Eagle Scout he learned good values reinforced by his life within the Church. Then there was the lesson to always make lemonade out of the lemons of life as Mom and Dad taught him. With his close friend as the Lord God, as His soldier, he found himself on a mission that he did not fully understand, but a mission that was greater than himself or his understanding.

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.