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Chronic pain sufferer Dennis Kinch pens book to encourage pain community

BY DSN STAFF

Dennis Kinch lives by the motto, "Do what you can, when you can." These seven words have carried him through hardships and triumphs. In 2005-2006, they even spearheaded his crusade to walk the entire Route 66 to raise awareness about chronic pain.

In 10 months, Dennis walked 2,400 mi. with a wheelbarrow containing his personal possessions. He slept in a tent and visited pain clinics and hospitals along the way to discuss pain with others. Extraordinarily, Dennis accomplished this long trek while dealing with his own pain.

His chronic back pain began more than two decades ago after twisting his back moving a freezer. Then in 2001, doctors diagnosed him with ankylosing spondylitis and Paget’s disease. Ankylosing spondylitis is a form of arthritis causing inflammation in the spinal joints. Paget’s disease involves abnormal bone destruction and regrowth. Although the diseases have begun to attack his internal organs the past three years, he has been able to put Type 2 diabetes, prostate cancer and kidney disease in remission.

All movement hurts. He feels pain along his entire spine from his hips up to his eyes. His thoracic spine is covered with metastatic lesions that are weakening the bone, and the interior of the bone is malformed, affecting nerves and muscles. Each day, Dennis deals with electrical sensations, numbness and burning, pulsing, throbbing, tingling, stinging agony. The only areas free of pain are his face and knees.

Unfortunately, there are no known treatments or cures for these rare diseases. Instead, Dennis has had to learn to adapt and find therapies that bring him some relief. Since he cannot lie on his back or sides without experiencing great pain and fatigue. Dennis’s recliner is very important to his overall wellness. Sitting is now the only way his body can fully relax.

Medications also have helped bring him some pain relief, though it took him nearly a decade to obtain the correct ones. Dennis takes a nerve medication to relieve the spinal pain, a central nervous system analgesic for the radiating and outlying pain and an opioid for residual pain. This allows him to be productive and feel more comfortable; he believes his life would be impossible to maneuver without taking these carefully monitored and properly dosed medications.

He has become proficient at distinguishing between damaging and non-damaging pain. He knows which movements, like lifting heavy objects, cause permanent damage. Dennis also has learned how to handle non-damaging pain so that he can participate in life. While most would think Dennis looks normal and can communicate effortlessly, everything from making a phone call to doing household chores causes him delayed onset muscle spasms, or DOMS. These horrific spasms leave him completely debilitated for various lengths of time.

Today, Dennis is housebound and nearly bedridden in the advanced end-stages of both conditions. Art, drawing, wanting and music help him stay busy. Breathing, stretchIng and relaxation are now exercises that keep him physically and mentally strong.

For the first 14 years of his pain journey, Dennis experienced many negative feelings, like anger, fear, anxiety and dental. He lost his wife, job and home. It took time for him to accept pain, and what he calls "the positive side of the pain cycle." Pain ultimately led Dennis to a better place. He met the physical therapist that showed him how to hold on to the "big picture." Everything that was sacred to him he had previously taken for granted: pain made him grateful for the gifts In his life.

Believing in a power larger than himself gives him the power to accept his fate and forgive himself and others for wrongs done. By letting go, he has a newfound strength in mind, body, emotion and spirit. He walked when he medically should not have been able to walk. He shared his story and became victorious over his condition. "Chronic pain has given me the opportunity to complete the greatest challenge of my life: staying genuinely happy despite constant pain."

Understanding that life is always filled with some amount of pain, Dennis wrote a book that chronicles his experiences on the road and explains the Pain Cycle and Pain Amplifier. His wish for others with pain is to believe in the power within. Believe you can move forward enjoying life and being happy again. Recognize that pain is a journey or an adventure; it will have ups and downs, but it is how we finish that truly matters.

In his opinion, the greatest problem facing the pain community is the lack of validation. He feels non-validation is actually just fear from the giver to the receiver. Pain needs to be better understood so others can empathize. On the other side, Dennis also thinks those with pain need to look at the reasons why no one validates pain and what we as a community can do to change those perceptions. Pain should not have to cost us meaningful relationships, financial security or proper care.

While he has worked with large organizations in the past during his Route 66 walk, Dennis has gained the most strength from the pain community. He felt support that only others who have undergone similar experiences could give.

This is why Dennis likes grassroots organizations run by those with pain, such as U.S. Pain Foundation, Artists in Transitions and Heroes of Healing. Not only are these groups free to join, but they also offer hope, an outlet and valuable resources.

Dennis proves that there are no limits to what we can accomplish. At 55 years, he is an inspiration, still making every day count. "I guess I see myself as ever-changing and always adapting. While I wish I had the wisdom I do now back in 2001, I am just so grateful to be where I am today. My time is limited, but my legacy hopefully will live on forever."

For more on Dennis’ journey, visit his website at WalkForHealing.weebly.com



Resources

Invisible Project
The Pain Cycle
Artists in Transition
Heroes of Healing
U.S. Pain Foundation

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Ehlers-Danlos Syndrome patient Ellen Smith serves as advocate for pain relief access

BY DSN STAFF

Ellen Smith has Ehlers-Danlos Syndrome, a progressive degenerative connective tissue disorder characterized by joint hypermobility, skin extensibility and tissue fragility. Ellen knew from childhood that she was unusually flexible and highly mobile, but thought nothing of it. She first encountered problems as a master swimmer, when she began to have excessive shoulder pain from overstretching her ligaments. To ease the pain, she would stop swimming for a week. She was once given a steroid shot, but this gave her horrific pain and made her unable to raise her arm for a month. Ellen now knows this course of treatment was the worst thing for EDS, as steroids break down collagen even further.

In 2002, Ellen had surgery for a dropped bladder. When her bladder dropped again two years later, her surgeon referred her to a geneticist for testing, and Ellen was diagnosed with EDS. Although she intuitively knew the diagnosis was right, she was shocked and sought a second and third opinion before she finally accepted it.

Classical EDS affects 1-in-20,000 to 1-in-40,000 people. Ellen’s case is severe and has worsened in the past year. She is extremely cautious in public, as the slightest touch, bump, squeeze or hug can easily dislodge her joints. Since her diagnosis, as the deterioration of connective tissue in her joints has progressed, she has undergone 22 major surgeries to help her maintain mobility. Her pain increases significantly throughout the day, and on bad days, her mind becomes foggy. With compromised oxygen levels reaching as low as 45%, Ellen relies on a BiPAP SIT (i.e., a home respirator) to keep her oxygen levels within a normal range.

Maggie, Ellen’s black Labrador service dog, is her protector. Maggie helps stabilize Ellen so she can stand and walk, and brings her medicine from the refrigerator. Just six days after receiving Maggie, Ellen stopped breathing in the middle of the night, and Maggie woke her, saving her life.

Ellen has had to stop teaching, swimming and coaching. She can no longer help her husband with small home improvement projects, a pastime she once enjoyed. To the outside world it appears that EDS robbed Ellen of her life, and yet Ellen would disagree. Although she recognizes that her life has shifted course, she refuses to become emotionally paralyzed. She and her husband, Stu, live by the motto that you must enjoy what you have while you have it. She has passion for life and continues to live with hope and love.

Ellen is proactive in her therapy program. She follows an exercise regime on her bed to strengthen core muscles and uses pool therapy to jog. Because she also has a rare form of celiac sprue, a chronic digestive react disease that interferes with the digestion and absorption of nutrients from food, she follows a strict diet that prohibits dairy, soy and gluten.

Although Ellen has had severe reactions to most medications, she has found pain relief from medical marijuana, which is legal in her home state of Rhode Island. She is proud of her state for passing legislation enabling its distribution, and is an active supporter of the Gifting Program, which allows people to share limited amounts with others.

Ellen works as an advocate leader for the U.S. Pain Foundation and as a state ambassador for the Arthritis Foundation. Another organization that is particularly close to her heart is the Ehlers-Danlos Syndrome Network CARES Foundation, a group dedicated to creating public awareness and funding research.

While working with these organizations gives Ellen a sense of purpose, she finds the greatest fulfillment in connecting with other EDS patients. She understands the speculation and criticism they experience, and urges them to have hope and courage. Ellen is still a compassionate educator. She teaches people to be proactive, to be their own best advocate and to find their own answers, believing that if something cannot hurt us, it is worth trying.

With the support of her four sons, the devotion of Maggie and the unconditional love of her husband, Ellen moves forward. She lives each moment as it comes and is happy to be alive.

"I don’t want to be remembered as someone who pitied herself. I want to be remembered as person who tried, a person who made a difference, lived life and found joy."



Resources

INvisible Project
Ehlers-Danlos National Foundation
Ehlers-Danlos Syndrome Network C.A.R.E.S., Inc.

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Walgreens recognized for Hurricane Sandy efforts by Department of Homeland Security

BY Michael Johnsen

WASHINGTON — The Department of Homeland Security on Wednesday announced that Walgreens, Monsignor John Brown and the New York Mets have each been awarded the 2013 Rick Rescorla National Award for Resilience, recognizing their contributions to their communities in the aftermath of Hurricane Sandy.

“The Rick Rescorla National Award for Resilience recognizes outstanding response to a catastrophic incident and leadership in fostering resilient and prepared communities," said acting Secretary of Homeland Security Rand Beers. “The devastation and destruction caused by Hurricane Sandy impacted millions of families, and today many are still recovering from the storm. But this storm also produced many heroes who rose to the challenge and assisted those in need. The three recipients of this year’s award truly exemplify this spirit of resilience and strength, serving as models for communities across our nation.”

Walgreens implemented business continuity plans before the storm made landfall, enabling the company to continue providing for basic human needs. In the aftermath of the storm, Walgreens quickly dispatched mobile pharmacies and constructed temporary pharmacies, continuing to provide services throughout the region. The company also shipped 25,000 blankets, three semi-trailer loads of water and other items that governmental organizations were lacking.

Under Monsignor Brown’s leadership, St. Francis de Sales Parish became the largest relief center on the Rockaway peninsula, providing hot food, medical care, mental health care, trauma counseling, clothing, cleaning supplies, pet food and veterinary care. At the height of the effort it served between 4,000 and 10,000 people per day.

The New York Mets, working with the city’s Office of Emergency Management, opened their facilities to be used as a logistics dtaging srea for more than three and a half months to receive, stage and distribute unassigned resources prior to or following the storm. The Mets also supported first responders’ daily efforts by providing housing for up to 600 workers a night and distributing more than 1,500 meals per day during the peak recovery period following the storm.

In 2011, DHS created the Rick Rescorla National Award for Resilience in memory of Richard "Rick" Rescorla, who on Sept. 11, 2001 led a massive evacuation of Morgan Stanley’s 2,700-person workforce located in the South Tower, saving the lives of all but six. Following the 1993 terrorist attacks on the World Trade Center, Rescorla regularly drilled his Morgan Stanley employees in disaster preparedness and response, especially evacuation, ensuring that employees knew how to evacuate and where to go on 9/11.

The Rescorla Award is the Department of Homeland Security’s first national resilience award for superior leadership and innovation by a non-governmental individual or organization who exemplifies the qualities and achievements of Rick Rescorla, emphasizing leadership in effective preparation, response and recovery in the face of disasters.

 

 

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