UNE’s Center for Excellence in Neurosciences and Interprofessional Education Collaborative have partnered to create this collection of pain narrative videos as part of a group of interprofessional training materials. These materials were crafted to aid future practitioners in providing the highest quality of care to patients experiencing chronic pain. They highlight the importance of working interprofessionally and approaching the patient as a whole person when in treatment. Included are outcomes from a project funded in part by the Maine Cancer Foundation to examine cancer pain from an interprofessional perspective and shed light on a wide variety of obstacles that cancer pain patients face over the course of their treatment and life after treatment.
The pain narrative videos collected here give unique insight into the lives of patients experiencing chronic pain. Their intended use is as educational material or for patient advocacy, in pieces or as a whole.
-
Mikayla Bergquist: Amplified Musculoskeletal Pain Syndrome
UNE Office of Research and Scholarship and Michael D'Apice
Mikayla Bergquist is an eighteen year old female student and musician with Amplified Musculoskeletal Pain Syndrome. Mikayla sustained an acute wrist injury at ten years old as a result of an ATV accident that required surgery which led to diffuse chronic pain and emotional distress. Mikayla was diagnosed by a multidisciplinary Pain Treatment Service at Boston Children’s Hospital’s in winter 2016. A treatment plan was recommended for Mikayla following her diagnosis. Mikayla was provided with a section 504 plan to receive accommodations at school including adjunctive tutoring services, reduced workload, extra time for tests, and other supportive services. In addition, the attending physician, physical therapist, and psychologist advocated for physical therapy, cognitive behavioral therapy, and pain coping intervention therapy. Mikayla followed this treatment plan and created a nearly pain-free life for herself over the course of the next year and a half. She utilized support from her multidisciplinary professionals in Maine, as well as in Massachusetts. She found joy, distraction, and pain relief through music. Mikayla’s family also provided reinforcement throughout her journey. Mikayla is now thriving as a college student in Boston, pursuing a degree in entertainment management.
-
John Bove: Chronic Neuropathic Pain
UNE Office of Research and Scholarship, Michael A. D'Apice, Samantha J. Shepard, and Geoffrey M. Bove
John L. Bove (J.B.) was an 87 year-old widowed father of 6 and retired educator, who experienced severe chronic neuropathic pain. In 2013, J.B. presented at the emergency room with severe pain in his left abdomen and lower back. He was diagnosed with back pain, and imaging revealed a stable, non-dissecting aortic aneurysm. His pain exacerbated and he was given the diagnosis of postherpetic neuralgia. Although symptoms were subsiding, J.B.'s primary care provider prescribed antidepressants and performed two injections in the upper gluteal region, which exacerbated the pain, after which J.B. was referred to a pain clinic. Through his neuropathic pain journey, J.B. was treated at 4 pain clinics, which mostly focused on pharmaceutical pain management. He trialed many traditional and complementary treatments including massage therapy, chiropractic manipulation, meditation, TENS, two spinal cord stimulators, extensive medications, and acupuncture. Eventually, J.B.’s pain consisted of severe intermittent jolts to the left side, constant burning, and a hypersensitivity called “allodynia,” where even a slight breeze over his exposed skin caused severe pain.
-
John Schrader: Fibromyalgia
UNE Office of Research and Scholarship and Michael D'Apice
John Schrader, a 50-year-old male, experiences severe pain as a result of an injury he sustained while working. His injuries included herniated abdomen, a medial meniscus tear in his right knee, and completely torn rotator cuff. John can no longer work and is disabled. He finds simple tasks that he could once complete with ease very difficult, including mathematics. Recently, he was diagnosed with fibromyalgia.
-
Tony Lebranche: Cancer Pain
UNE Office of Research and Scholarship and Michael D'Apice
T.L., is a 14 year-old otherwise healthy adolescent male, who was diagnosed with Stage III Poorly Differentiated Adenocarcinoma of the Colon at age ten after experiencing a three week high-grade fever accompanied by flu-like symptoms. Two days post diagnosis, T.L. underwent a total colectomy and iliorectal anastomosis at Massachusetts General Hospital, removing his entire large intestine and connecting his small intestine to his rectum. Several weeks later, while enduring chemotherapy T.L. was referred to a geneticist to determine the cause of his extremely rare early life cancer diagnosis. After multiple rounds of testing, T.L. was diagnosed with Lynch Syndrome, a cancer predisposition syndrome. In particular, T.L. carries homozygous mutations located on PMS2, causing Constitutional Mismatch Repair Syndrome, further predisposing the development of other forms of cancer. T.L endured a successful six-month stint of chemotherapy using modified FOLFOX 6 and Oxaliplatin.
-
Patrick Elliot: Cancer Pain
UNE Office of Research and Scholarship, Michael A. D'Apice, Samantha J. Shepard, Morgan Mitchell, and Katherine Roy
Patrick Elliott is a 26 Year old male who was diagnosed with Burkitt’s Lymphoma four years ago shortly after his daughter was born. Due to P.E.’s critical condition, intrathecal chemotherapy was administered immediately post diagnosis. The pervasive effects of P.E.’s diagnosis induced depression and stress regarding his inability to participate fully in his role as a father and provider. P.E.is currently in remission and is enjoys spending time with family, cooking and has resumed his role as a provider for his family.
-
Lindsey Simmons: Chronic Migraine
UNE Office of Research and Scholarship, Michael D'Apice, Samantha Shepard, and Morgan Mitchell
Lindsey Simmons is a twenty-three year old who experiences chronic migraines, including retinal migraines, with and without aura. After onset in high school, her migraines increased in severity and frequency during her undergraduate studies. L.S. has explored several migraine prevention and treatment options, however, none have proven to be successful. On average, L.S. experiences 8-12 migraines monthly and only achieves analgesia through use of medication. L.S. was diagnosed with benign essential tremor, further complicating her condition, daily life and treatment. Currently, L.S. is in her second year of graduate pharmacy school and finds solace in her artwork. L.S. is actively involved in research to increase chronic pain awareness and ways to improve pharmacy practice guidelines for palliative care.
-
Amelia Watt: Complex Regional Pain Syndrome
UNE Office of Research and Scholarship and Michael D'Apice
Amelia is an 11-year-old female who developed Complex Regional Pain Syndrome as a result of a soccer injury. She underwent an intensely monitored rehabilitation program at Boston Children’s Hospital in the Mayo Family Pediatric Pain Rehabilitation Center. The program offered an interdisciplinary approach to treatment and recovery for children living with chronic pain.
-
Jani Druck: Acute Myelogenous Leukemia
UNE Office of Research and Scholarship and Michael D'Apice
Jani is a 58-year-old who was diagnosed with acute myelogenous leukemia in 2010, after a blood test due to a few small infections. She received two chemotherapy treatments to prepare for a stem-cell transplant. Through her journey, Jani says that she didn’t feel the pain from the disease, but rather the side effects of the treatments.
-
Kathy Thompson: Breast Cancer
UNE Office of Research and Scholarship and Michael D'Apice
Kathy is a 61-year-old professor and mother who was diagnosed with Breast Cancer at the age of 57. Kathy’s journey to being cancer-free includes her struggles with taking time off from work, going through surgeries and chemotherapy treatments, living with severe gastrointestinal pain and the miracle of keeping her hair in the process.
-
Sarah Couture: Aplastic Anemia With Pre-Leukemic Cells
UNE Office of Research and Scholarship and Michael D'Apice
Sarah is a 14-year-old female living with her family in southern Maine. During a family vacation, her mother noticed that she was not becoming tan. Several doctors’ appointments later, Sarah was diagnosed with aplastic anemia with pre-leukemic cells. She underwent chemotherapy and a bone marrow transplant at Boston Children’s Hospital facilitated by a marrow donation from one of her sisters.
-
Shane Beaulieu: Testicular Cancer
UNE Office of Research and Scholarship and Michael D'Apice
Shane is a 40-year-old Air Force Veteran who was diagnosed with testicular cancer which spread to his lymph nodes. Shane underwent a right orchiectomy which revealed he had testicular seminoma. To attack the cancer, Shane endured chemotherapy and took Cisplatin, a platinum-containing drug, which in turn caused serious side effects, severe chronic pain known as neuropathy. Despite taking pain medicine, Shane still experienced severe pain and eventually was referred to a hospice facility. Although Shane now lives cancer-free, to this day he suffers with mild pain in his hands and feet.
-
Pain Awareness Month
UNE Office of Research and Scholarship, Michael D'Apice, and Kathrine Roy
Chronic Pain affects nearly 1.5 billion people world wide. It is a growing epidemic associated with loss of quality of life, financial strain, medical costs, opiate dependency, and unrelenting physical pain. The University of New England has aided in combating this epidemic through education, research, and outreach. Utilizing top tier research facilities, its Osteopathic medical school, and willing faculty and students prepared to advocate for patients, UNE has launched a 3 prong approach to fight this epidemic.
-
Charlotte Merle-Smith: Injury Induced Neuropathic Pain
UNE Office of Research and Scholarship, Michael D'Apice, Samantha Shepard, and Morgan Mitchell
Charlotte Merle-Smith is a 32 year old horseback rider who is paralyzed from an incomplete spinal cord injury she experienced nine years ago in an ATV accident. The near death experience was caused when her ATV flipped over on top of her and folded her body the in the wrong direction at the waist dissecting her carotid artery, breaking four ribs, causing a traumatic brain injury and incomplete spinal cord injury at T8. After enduring years of rehab and physical therapy, C.M. now focuses on physical rehab and has relearned how to horseback ride, handcycle and has won the Burlington, VT city marathon. C.M. was a runner up for the 2016 Rio special olympic equestrian qualifying team and is an active advocate for the disabled.
-
James Mitchell: Injury Induced Chronic Pain And Chronic DVT
UNE Office of Research and Scholarship, Michael D'Apice, Samantha Shepard, and Morgan Mitchell
James Mitchell is a 51 year old male with chronic neck and back pain, fibromyalgia, diabetic neuropathy, psoriatic arthritis and a chronic deep vein thrombosis (DVT). 29 years ago James was working as a carpenter when the staging collapsed and he fell 25 feet. Since his initial injury James has undergone many surgeries, injections, pharmaceutical interventions and alternative therapies in attempt to manage his pain.
-
Ken Guay: Degenerative Disc Disease
UNE Office of Research and Scholarship, Michael D'Apice, Samantha Shepard, and Morgan Mitchell
Ken Guay is a sixty-three year old disabled truck driver who experiences chronic pain due to the effects of early onset degenerative disc disease, which was diagnosed in adolescence. K.G. has endured multiple invasive procedures, failed surgeries and implants to seek analgesia. Living with his wife in Maine, K.G. spends his time woodworking when his pain allows. K.G. attends the Chronic Pain Support Group of Southern Maine and remains optimistic about future advancements in degenerative disc disease treatment.
-
Samantha Shepard: Chronic Back Pain
UNE Office of Research and Scholarship, Michael D'Apice, Samantha Shepard, and Morgan Mitchell
Samantha Shepard is a twenty-nine year old undergraduate student who experiences chronic lower back pain stemming from an injury which caused a backwards right sacral torsion, multiple bulged discs in the lumbar region, musculoskeletal pain, ‘occipital nerve headaches’ and general lumbar instability. After enduring four years of rehabilitation, invasive and noninvasive procedures and regenerative therapies, S.S.’s spine has partially healed and her pain levels have decreased, though she still experiences chronic pain constantly. She is pursuing a career as a primary care physician and is a strong advocate for interprofessional chronic pain treatment, chronic pain education and finds catharsis through her work.
-
Kathryn Hill: Chronic Migraine/Occipital Neuralgia
UNE Office of Research and Scholarship, Michael D'Apice, Samantha Shepard, Morgan Mitchell, and Morgan Hill
Kathryn Hill is a fifteen year old high school student who currently experiences occipital neuralgia causing chronic migraines. She has identified an array of migraine triggers including smells, lights, noises and various food. Experiencing depression secondary to migraines, K.H. has struggled with suicidal urges due to the pervasiveness of her pain. Distraction techniques, sleep and medication are the only factors which provide analgesia. Struggling with adverse reactions to mediation, K.H. has endured two nerve decompression and removal surgeries which decompressed her occipital nerve, and removed nerves behind her eyelids and nerves proximal to her forehead which provided mild pain relief. Katherine continues to have migraine flare ups but after surgery they have become more manageable. She has resumed most of her daily activities despite her occasional migraines.
-
Dale Mowery: Arachnoiditis
UNE Office of Research and Scholarship and Michael D'Apice
Dale is a 57-year-old classically trained chef with Arachnoiditis. Arachnoiditis is trademarked with the swelling of a membranous sac surrounding the nerves of the spine called the arachnoid. Dale’s Arachnoiditis stemmed from a cooking accident years ago, leaving Dale unable to work to this day. Dale experiences lumbar back pain and depression as a result of his injury. Dale has tried various high dose opiate pain medications with little to no positive effects and many side effects. Dale now finds pain relief from using medical marijuana. Medical marijuana has allowed Dale to return to some of his favorite activities including organic gardening, reading, going out with his family and attending the Southern Maine Chronic Pain support group.
-
Nicole Santamore: Ankylosing Spondylitis
UNE Office of Research and Scholarship and Michael D'Apice
Nicole is a 22-year-old mother of two children with autism, who has been experiencing chronic pain since adolescence in result of Ankylosing Spondylitis (AS). AS is a type of arthritis that affects mostly the sacroiliac joints and lumbar spine that eventually causes SI joint fusion and lumbar vertebral fusion. Nicole has tried various steroids, medications and injections to help with pain, however they have had little to no positive effects. Having two young children, Nicole has avoided opiate pain medications due to the side effects. Nicole has found some relief through medical marijuana and exercising. With the help of her family, Nicole has kept a positive outlook on life and has been able to be an active mother in her children’s lives.
-
Gray Cabannis: Multiple Epiphyseal Dysplasia
UNE Office of Research and Scholarship and Michael A. D'Apice
Gray is a 44-year-old father and retail website manager with Multiple Epiphyseal Dysplasia who has been experiencing chronic pain since childhood. Multiple Epiphyseal Dysplasia is a disorder of the cartilage and bone development in the long bones, such as arms bones and leg bones. After having undergone bilateral hip replacement surgeries, as well as physical therapy, Gray is now adjusting to a life with less pain.
-
Marilynn Morel: Spinal Cord Injury caused Tetraplegia
UNE Office of Research and Scholarship, Michael D'Apice, and Lindsay St. Louis
Marilyn is a 68-year-old grandmother with Tetraplegia or paralysis of all four limbs. Eighteen years ago Marilyn was in an automobile accident, where she fractured her C4-C6 vertebrae and obtained a spinal cord injury. In result of her accident she also feels pain radiating down her left arm. Hesitant to use opiate pain medication out of fear of addiction, Marilyn uses physical therapy and relaxation techniques to manage her pain. After her accident, Marilyn received a service dog and home modifications which have helped her gain back her independence.
-
Robert Foley: Musculoskeletal Pain And PTSD
UNE Office of Research and Scholarship, Michael D'Apice, and Lindsay St. Louis
Robert is a 57-year-old veteran with chronic musculoskeletal pain, as well as post-traumatic stress disorder (PTSD), due to 32 years of service in the Navy. Over the course of his career Robert has had many injuries, some of his serious injuries have included a lumbar compression fracture, 5 herniated discs, bilateral torn Achilles tendon and a ruptured tympanic membrane. Rob speaks out about PTSD and outlets for dealing with chronic pain such as equine therapy and exercise. He remains active in advocating for patients in chronic pain, educating veterans on ways to manage their PTSD and educating future practitioners.
-
Ernie Meritt: Chronic Low Back Pain
UNE Office of Research and Scholarship, Michael D'Apice, and Lindsay St. Louis
Ernie is a 51-year-old woodworker hobbyist with chronic lower back pain due to multiple herniated discs in result of a work injury. Ernie has undergone two separate vertebral fusion surgeries and two double laminectomies and currently experiences “failed back syndrome,” lumbar instability and lumbar radiculopathy — or nerve pain radiating from the spine. Further complicating his treatment, Ernie was diagnosed with narcolepsy in 2003. Despite his chronic pain, Ernie remains active through managing the Southern Maine Chronic Pain Support Group, woodworking and visiting with his two grandchildren.
-
Nannette Keating: Spinal Stenosis, Lumbar Radiculopathy, Fibromyalgia, Thoracic Outlet Syndrome And Myositis
UNE Office of Research and Scholarship, Michael D'Apice, and Lindsay St. Louis
Nanette is a 51-year-old self advocate with chronic pain from Spinal Stenosis, Lumbar Radiculopathy, Fibromyalgia, Thoracic Outlet Syndrome and Myositis; which is the inflammation of muscles due to Rheumatoid Arthritis. Spinal Stenosis is characterized by deteriorating bone in the vertebrae which places pressure on the nerve roots causing radiating nerve pain or Radiculopathy. In addition, Nanette experiences Thoracic Outlet Syndrome, which is characterized by a narrowing of the thoracic canal that veins and muscles pass through causing pain, numbness and dysfunction. Nannette is no longer able to work due to overwhelming pain but remains positive.
-
Susan Gold: Rheumatoid Arthritis
UNE Office of Research and Scholarship, Michael D'Apice, and Lindsay St. Louis
Susan is a 63-year-old writer, publisher and educator with Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune inflammatory disease that causes painful swelling of the linings of the joints. Since the initial onset of her pain Susan has been a self-advocate and educator. Susan created the Southern Maine Chronic Pain support group, helping her and other chronic pain sufferers in the area keep a positive outlook on life despite their pain.