In 1986 Guy LoPresti went to see his doctor. As a 24-year-old college student, Guy didn’t expect anything to be wrong. He had noticed, however, that he had been urinating frequently and the urine smelled sweet. It was during this appointment that he learned he had type 2 diabetes.
Type 2 diabetes is a chronic condition affecting the body’s ability to metabolize glucose sugar. While there is no cure, it is possible to manage this condition by eating well, exercising regularly and maintaining a healthy weight. If blood sugar levels are not monitored and controlled, serious complications can occur. The list includes heart disease, stroke, kidney failure, diabetic retinopathy, ketoacidosis and limb amputation.
Guy’s doctor told him he would need to check his blood sugar levels and recommended a particular book on diabetes. That was it. There was no warning of what could happen if he did not take better care of himself. With 30 million people living with this condition at the time, compared to the now 285 million people diagnosed with type 2 diabetes, knowledge was limited.
Guy, whether in denial or just ill-informed, did not think much about his diagnosis. He was young and felt invincible. He knew he was slightly overweight, but he was extremely active. He played tennis daily, enjoyed the outdoors, and loved anything involving music. Guy was the typical college student; taking care of his health was the furthest thing from his mind.
While still in school, Guy began working in the corporate world, and found himself quickly moving up the ladder upon graduation. As a telecommunications consultant, he traveled the country constantly. He pushed his body to its limit on a daily basis. In 1989, he began feeling tingling, numbness and pain in his extremities. Then twenty-seven years old, he made another appointment to see a doctor. This time he heard devastating news. He had developed diabetic peripheral neuropathy (PN).
Peripheral neuropathy is damage to the peripheral nervous system. This is the vast communications network that transmits information from the brain and spinal cord to every other part of the body. Characterized by tingling and loss of feeling in the feet and hands, the onset of pain can strike suddenly and be severe. In extreme cases, individuals may experience burning pain, a prickling sensation, muscle wasting, paralysis, sexual dysfunction, depression or even organ or gland dysfunction.
By the mid-90s, Guy had his diabetes under control. Yet even with normal blood sugar levels, his neuropathy continued to progress. While this should have been startling, Guy didn’t slow down. He kept working insane hours, keeping a hectic travel schedule and living life the best he could. He was a provider, and while more aware of his health, he refused to change his busy lifestyle. His feet were now completely numb and he was in constant, burning agony. But he had a family to support and a job that counted on him. He had to press on.
The next decade he was leading two separate lives. Not wanting work to know the extent of his health problems, human resources alone knew of his deteriorating condition. He would push himself until the pain got so bad he would need to take a three-month leave for foot surgery. A workaholic, he would then return to his busy schedule until the next time he needed surgery to ease the pain.
In 2003, Guy finally realized he needed to leave the corporate world. This was a hard decision, as he loved his job, but he also knew his health could not withstand the demands. He needed to make a change, so he went back to his first love: music.
Guy had received his bachelor’s degree in music with an emphasis on piano and voice. Playing the piano and singing was something that he always did on the side. It made him happy and he had a talent for it. He felt his next career should incorporate his passion, so he opened his own business. The Performing Arts Loft was a success. Guy had a stream of clients seeking out his musical expertise. For a time, it was also easier on his body.
Yet it was only a matter of time before his symptoms reappeared. The constant repetition of striking the keyboard impacted the pain in his hands and wrists. In addition, the climb to reach his studio took a toll on him after even more foot surgeries. At the end, Guy literally had to crawl up and down the stairwell to reach his loft. With the pain out of control and so intense, he once again reached a crossroad. He had to accept that he could no longer work in this capacity.
Only in his mid-forties, Guy was determined to find work elsewhere. Now aware of his limitations, he was forthright with his new employer. He took more breaks through the day and sat when he needed to rest. Working as a food and beverage manager for a hotel management company, one of his perks was that he could perform at all their properties. So each weekend, after finishing his 50-plus-hour work shift, Guy would bring his piano to a hotel and play.
Unfortunately, having to lug his equipment to and from each hotel strained his health even more. With the tingling, burning and numbness progressively getting worse, this action became more challenging and painful. Within a year, he lost all feeling in his hands. He became severely depressed and hid this from those close to him.
In Dec. 2010, during his routine visit to the podiatrist, Guy learned he had osteomyelitis. Osteomyelitis is an infection of the bone. He was told he might want to stay off his foot so the infection had time to heal. In Guy’s mind, his doctor’s recommendation didn’t seem overly stern or serious. He rested for three weeks and then resumed working even though his wound never fully healed.
Jan. 6, 2011 became his last day. His foot began bleeding and puss began to ooze from the infection as he performed. With the pain beyond anything he’d ever dealt with, he became dizzy and disoriented. He immediately went to the emergency room and was admitted to the hospital. A CT bone scan revealed compromised bones in his right foot. He would need to have surgery to amputate the infected portion of his foot. Two days later, Guy underwent a transmetatarsal amputation of the right foot. He had already lost his right and left pinkie toes and metatarsal bones due to the disease and infection.
Guy now lives with advanced diabetic peripheral neuropathy. He has no feeling in either foot up to his knees, or in hands up to his wrists. Every affected extremity constantly tingles and burns. He has had seven surgeries on his feet during the past 25 years. The disease has left him with sexual dysfunction as well. He cannot feel his penis and an erection is impossible even with medication. Additionally, Guy has been diagnosed as having severe depressive disorder and anxiety.
His entire life has been uprooted due to the pain and suffering. He can no longer stand or walk for more than five minutes because putting pressure on what is left of his feet causes his pain to flare and rise to unimaginable levels. He can no longer move his fingers independently due to the advanced stage of his peripheral neuropathy, which means he is unable to perform live. The hardest change for Guy, which is still a struggle, is living every second with the burning agony that accompanies peripheral neuropathy.
Relief had been hard to find in the past, but since his amputation, Guy has been open to medications other than those to thin his blood, aid his anxiety and control his high blood pressure and cholesterol. He currently takes Lyrica, gabapentin, an opioid and an antidepressant. While grateful for a small respite in pain, the side effects of brain fog, increased depression and opioid induced constipation can be challenging to live with.
Guy has found that soaking in hot and then cold water temporarily numbs his pain. Understanding the importance of moving his body every day, he alternates between using a stationary bike, a no-impact Total Gym and swimming. It is hard for him to get around, but he makes it a priority to exercise. No matter how limited the activity may be, he knows moving helps keep his health from declining more. He even changed his entire diet.
He recently tried pulsed infrared light therapy, a treatment now recommended by the American Diabetes Association. This therapy helps relieve pain and speeds the healing process by improving circulation using infrared light frequencies. With just one center in New Jersey offering this treatment, Guy has only been able to make the 45-minute drive once. However, after feeling warmness and increased mobility in both his hands and feet the four days following the treatment, he is optimistic this treatment might be beneficial.
If he could offer others in similar situations advice, it would be to act fast and never give up. “You must find the right doctors and treatments quickly to avoid further damage from peripheral neuropathy. Do your research and move as much as you can. I know it hurts, but exercise will help; being sedentary only exacerbates the pain, disease and symptoms.”
He recognizes that living with daily, intractable pain is a battle. “Don’t be afraid to reach out when you need it the most. It took me a long time to learn that effective communication with loved ones is important. Make sure those around you understand that while sometimes hidden, your illness impacts your everyday life. You need a support system of people who realize the hardships while also encouraging you to become empowered. This happens when you are honest. Pain may make you short-tempered and isolated, so it is up to you to make sure those around you understand it is the pain and not them. I learned this the hard way.”
Finding groups dedicated to helping those suffering from pain has been a welcomed resource in Guy’s life. He often turns to The Neuropathy Association and U.S. Pain Foundation for inspiration and information. (The Neuropathy Association was dissolved at the end of 2014, but some of its programs were absorbed by the Foundation for Peripheral Neuropathy.) Through Facebook, Guy has even joined online support groups, which have also been helpful in his pain journey. These forums let him learn about possible new treatments, reaffirm he is not alone and form new friendships.
Guy wishes the public fully grasped the consequences of type 2 diabetes. This condition can be avoided by living a healthy lifestyle, and eating right and exercising can reverse it. He never thought about the consequences. The idea of kidney damage, loss of sight or peripheral neuropathy never registered as being a possible reality. Diabetic peripheral neuropathy destroyed his life, and he knows it didn’t have to be this way.
His mission is to inform others about the risks involved in being overweight and developing type 2 diabetes. If diagnosed, take appropriate measures. Taking care of yourself has to be the priority. No one should ever have to endure the pain, loss and suffering that Guy has lived with for a quarter of a century. Most important, he wishes there was better public awareness surrounding neuropathy and more funding allocated to research.
Through his experiences, Guy has discovered his innate strength and resiliency. He is focused on making a difference. Using his musical talent, Guy now writes songs to bring hope to those living with chronic pain. His messages are intended to let others know they are not alone, their lives have meaning and that there is always a reason to live.
The driving force in his life is his beautiful, 16-year-old daughter. Raising her alone is all the motivation he needs to continue to take care of his health. He wants to be here for her. Despite the hardships and losses, Guy is still confidant advances in the treatment of peripheral neuropathy will improve his quality of life. It might not be today, but may be tomorrow. In the meantime, he does what he can to maintain his health and stay well.
“I have a reason to live, and each day I choose to be a pain warrior. I am still here; for that, I am proud. I am a survivor and I will survive.”
The Foundation for Peripheral Neuropathy – http://www.foundationforpn.org
U.S. Pain Foundation: http://uspainfoundation.org
Surviving Chronic Pain Facebook Group:
Link to Song: https://www.youtube.com/watch?v=IIf_yc2zl7I