His nightmare began in 1969 – one year after leaving the Vietnam War. Symptoms of autonomic neuropathy affected his breathing with upper body paralysis that brought him to his knees and affected other parts of his body; mysterious chest pains, unexplained silent tachycardia, urinary and digestive problems.
An Army officer, he struggled for 10 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, 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 performed 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’.
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. 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 it was too painful to even sit.
For thirty 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”.
Objective tests that same year 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. He began receiving gamma globulin treatments (IVIg) in April 2004 and has had positive results. He receives this infusion every twenty one days.
By 2005 his extensive medical history and continued testing confirmed autonomic neuropathy – challenging decades of denial by experts in the medical system. In 2007, his neurologists told him that he had small and large fiber neuropathy. With all other causes of his neuropathy ruled out by medical testing, he was told in 2009 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. Lt. Col. Eugene Richardson, USA Retired, has spent 42 years living, and coping, with the symptoms of his progressive neuropathy and the devastation of Agent Orange. Richardson believes help should have come sooner. How? MORE research, MORE awareness and MORE medical training.
Lt. Col. Richardson holds a Masters of Education and a Masters of Science in Counseling and, with 35 years of counseling experience, he uses his vast knowledge and experience to provde straight answers and insight to those suffering with any form of neuropathy. He leads neuropathy support groups in Florida and teaches a seminar, “Coping with A Chronic Neuropathy”, that is endorsed by board certified neurologists at major universities. He is an advocate for neuropathy patients and veteran issues, working tirelessly around his disabilities while continuing to learn more about the relationship of Agent Orange to neuropathy.
We are pleased to announce that Lt. Col. Richardson will be contributing to our Foundation publications. He will focus on patient insights into neuropathy and what has been learned in the face of many challenges. He encourages patients to become partners with their health care providers, learning all they can about their condition.
His column is intended to be educational and informational ONLY and not medically diagnostic or prescriptive.