{"id":3117,"date":"2017-06-20T14:00:02","date_gmt":"2017-06-20T18:00:02","guid":{"rendered":"https:\/\/www.med.unc.edu\/healthsciences\/physical\/\/?p=3117"},"modified":"2018-05-21T14:02:43","modified_gmt":"2018-05-21T18:02:43","slug":"striking-a-balance","status":"publish","type":"post","link":"https:\/\/www.med.unc.edu\/healthsciences\/physical\/2017\/06\/striking-a-balance\/","title":{"rendered":"Striking a Balance"},"content":{"rendered":"<p><em>People with cerebral palsy (CP) are now living longer than they ever have before. But a longer life with CP can include more complex health issues that providers are struggling to accommodate.<\/em><\/p>\n<p><em>One physical therapist at UNC wants to change that.<\/em><\/p>\n\n<!-- iframe plugin v.5.2 wordpress.org\/plugins\/iframe\/ -->\n<iframe loading=\"lazy\" width=\"560\" height=\"315\" src=\"https:\/\/www.youtube.com\/embed\/WOCIxT8IIe4\" frameborder=\"0\" allow=\"autoplay; encrypted-media\" 0=\"allowfullscreen&gt;&lt;\/iframe\" scrolling=\"yes\" class=\"iframe-class\"><\/iframe>\n\n<p>When Sarah Dowd was diagnosed with breast cancer in August 2013, the news hit her like a shock wave. Her family has no history of cancer. She was only 48 years old.<\/p>\n<p>For anyone facing a cancer diagnosis, the physical, mental, and emotional challenges are immense, but Dowd had to face an additional hurdle \u2014 she has cerebral palsy.<\/p>\n<p>Her treatment, however, did not differ from standard breast cancer protocol. \u201cThey were a little more cautious in my chemotherapy because I have weak lungs, but my treatment was typical otherwise,\u201d Dowd says.<\/p>\n<p>Fiercely independent and resilient by nature, Dowd faced her cancer defiantly. Throughout chemotherapy, she spent time with friends, continued working, and kept going to the gym.<\/p>\n<p>It wasn\u2019t until after her chemotherapy treatment was done that she started to have issues. \u201cAfter the cancer, I gained a lot of weight,\u201d Dowd says. \u201cI started experiencing a lot of my pain in my knee and I started walking differently.\u201d<\/p>\n<p>Like 60 percent of individuals with CP, Dowd can walk \u2014 albeit with a slight limp on her left side. Her balance isn\u2019t perfect, but she can usually get around just fine. That changed when she started taking Tamoxifen, a drug to prevent her cancer from recurring. Her balance faltered, her left knee was in constant pain, and she started falling regularly.<\/p>\n<p>Dowd knew she needed to find a specialist \u2014 someone who could help her navigate the limitations of CP alongside the complex side effects of cancer treatment. Her search for that person brought Dowd to the Department of Allied Health Sciences at the UNC School of Medicine.<\/p>\n<h4>Coming to UNC<\/h4>\n<p>Little research exists on the combination of CP and cancer because individuals with CP didn\u2019t use to live into late adulthood. Up until about 25 years ago, children born with cerebral palsy would be institutionalized, and remained that way through their adult lives \u2014 they often died in their 30s and 40s.<\/p>\n<p>\u201cBut that\u2019s not the case anymore,\u201d says Deborah Thorpe, a UNC physical therapist and researcher who specializes in CP. \u201cPeople with CP now live a typical life span, to within five or six years of their peers without CP.\u201d<\/p>\n<p>Before she became a physical therapist, Thorpe worked as an elementary education specialist and special educator. She spent the better part of two decades working in schools with children with CP, developing lasting relationships over the years. But once they aged out of the school system, many of these children no longer had access to regular therapy \u2014 and, eventually Thorpe started receiving calls from families who didn\u2019t know where to turn.<\/p>\n<p>\u201cWhen I started to look into it, I realized there was very little research in this country, especially on aging and cerebral palsy,\u201d she says. \u201cAbout 12 years ago, I decided to devote my career to that.\u201d<\/p>\n<p>Today, the majority of Thorpe\u2019s work includes adults with CP. Moving through the world is a challenge for these individuals, and a constant strain on joints that have already been weakened by the disorder. Many individuals with CP who walk \u2014 but don\u2019t receive regular physical therapy \u2014 are actually worse off than their peers in wheelchairs because of the stress on their joints.<\/p>\n<p>In one of her studies, Thorpe examined 100 patients and found 84 percent of them experienced musculoskeletal pain. \u201cThese are not old arthritic people,\u201d Thorpe says. \u201cThe average age of the participants in that study was late 30\u2019s.\u201d<\/p>\n<p>Thorpe was in the midst of recruiting for another research study when she met Dowd at the UNC Carolina Rehabilitation Center.<\/p>\n<p>\u201cI wasn\u2019t even thinking that physical therapy was going to be part of the solution \u2014 I thought bracing or something,\u201d Dowd says. \u201cThen the doctor tells me about research, and Debbie happened to be at the clinic that day.\u201d<\/p>\n<h4>Maintaining mobility<\/h4>\n<p>\u201cSarah is very unique in a way because she has other things going on besides cerebral palsy,\u201d Thorpe says. \u201cShe\u2019s the first adult with CP I\u2019ve met that is also a breast cancer survivor.\u201d<\/p>\n<p>After consulting with her oncologist in April 2016, Dowd stopped taking Tamoxifen. \u201cI was aware of the possible side effects of bone and joint pain, but I didn\u2019t correlate it to impacting my CP in the way that it did,\u201d she says. Since Tamoxifen is a preventive medicine, the oncologist cautioned Dowd about the possibility of her cancer returning. She decided to take her chances in hopes of improving her quality of life.<\/p>\n<p>\u201cIt\u2019s kind of like a puzzle when you work with someone with cerebral palsy,\u201d Thorpe says. You address one thing and then something else happens.\u201d Soon after she started seeing Dowd, Thorpe found she had a leg length discrepancy. \u201cWe had orthotics made for her shoes, evened her out, but when we did that, it was her good leg that was shorter,\u201d Thorpe says. \u201cNow she\u2019s being shifted onto her impaired side so putting more stress on that side. Her knee is swelling more frequently \u2014 we\u2019re trying to address these things.\u201d<\/p>\n<p>Because of her CP, Dowd has low bone density. \u201cSo her chance of fracture when she falls \u2014 and she falls very often \u2014 is high,\u201d Thorpe says. \u201cShe came to me because she wanted to gain her strength back and reduce her risk of falls.\u201d<\/p>\n<p>Of all the therapists Dowd has worked with over the years, she says Thorpe has been the most attentive. \u201cThe way she emails back and forth. If I had to cancel an appointment, she didn\u2019t just say, \u2018Okay, we\u2019ll see you next time.\u2019 She would say: \u2018We\u2019ll fit you in tomorrow.\u2019 If I was experiencing pain, she would problem solve it,\u201d Dowd says. \u201cShe always tells me, \u2018I want you to be at your best.\u2019\u201d<\/p>\n<p>Thorpe is also realistic. When they first started working together in September 2016, she told Dowd there was a good chance she would eventually have to have surgery on her knee, despite all their physical therapy work.<\/p>\n<p>Dowd is scheduled to have her knee operated on in July. But as soon as she\u2019s done with the surgery and rehabilitation, she wants to go back to working with Thorpe.<\/p>\n<h4>Falling off the radar<\/h4>\n<p>Cerebral palsy most often results from a lack of oxygen to an infant brain during pregnancy or childbirth, and babies born prematurely are most at risk for developing it. \u201cUnbelievably, in this technologically advanced country that we live in, the incidence of CP was increasing up until the last couple years \u2014 now it\u2019s leveled off,\u201d Thorpe says. \u201cBecause we\u2019re getting better and better at saving younger preemies\u2014and they have the highest risk for a brain bleed. Even though we\u2019re really good at saving them, a percentage of them will have cerebral palsy.\u201d<\/p>\n<p>In the best case scenario, the child is diagnosed early on, and receives intensive services and therapies.<\/p>\n<p>\u201cBetween zero and 5 years of age is when the brain has the most neuroplasticity,\u201d Thorpe says. \u201cIntervention can still be effective past that point, but to get the biggest bang for your buck neurologically \u2014 to get the brain to rewire itself \u2014 you want to intensely intervene very early in the child\u2019s life.\u201d<\/p>\n<p>Approximately 764,000 people in the U.S. manifest one or more symptoms of cerebral palsy, according the Centers for Disease Control. The severity of symptoms varies widely, including muscular weakness and spasticity, trouble with walking and balancing, and trouble multi-tasking. While 40 percent of adults with cerebral palsy have both cognitive and physical impairments, the other 60 percent are not cognitively impaired, and have the potential to be productive, hold a job, and fully participate in their communities.<\/p>\n<p>\u201cSome people, like Sarah, do very well,\u201d Thorpe says. \u201cThere are students walking around on this campus that have cerebral palsy and you would never know it, except for possibly a slight limp or a posturing of a hand.\u201d<\/p>\n<p>Until they are 18, most children with cerebral palsy receive regular, intensive therapy in school. Some students, because of cognitive involvement, don\u2019t age out of the school system until they\u2019re 21. \u201cBut after that, whether they have cognitive impairment or not, typically all services drop way off,\u201d Thorpe says.<\/p>\n<p>Once they exit the school system, adults with cerebral palsy often fall off the radar, according to Thorpe. \u201cIf they don\u2019t have a catastrophic medical event, then they may not get seen by a primary physician or other adult health care providers for several years.\u201d<\/p>\n<h4>Living longer<\/h4>\n<p>While advances in medicine and technology have contributed to longer life expectancy for individuals with CP, the training for healthcare practitioners has not caught up.<\/p>\n<p>A typical adult practitioner is not trained to provide specialized care for someone with cerebral palsy, which has traditionally been approached as a \u201cpediatric\u201d disorder. \u201cIn the past \u2014 about 40 to 50 years ago \u2014 they didn\u2019t need to be trained because these kids didn\u2019t live that long,\u201d Thorpe says.<\/p>\n<p>But now they do.<\/p>\n<p>Thorpe often gets referred patients who are losing their motor function. They start falling more or have a fear of falling. \u201cRegardless of whatever else they have going on, almost every single one of them is experiencing significant pain.\u201d<\/p>\n<p>Thorpe is part of a small contingent of researchers both in the U.S. and abroad and whose research focus is studying the development of secondary conditions in adults with cerebral palsy. This country does not currently have a national registry but a group of dedicated researchers (including Thorpe) is working to fill that void with an initiative called the Cerebral Palsy Research Network.<\/p>\n<p>\u201cMany European countries are far ahead of us in research with adults with cerebral palsy because they all have registries and can follow the children longitudinally into adulthood,\u201d Thorpe says. \u201cThe United States needs to get up to speed.\u201d<\/p>\n<p>She wants the ability to collect data on children as they transition into adulthood, and specifically follow the services offered to them. She has a grant to look at national Medicare claims to look at the treatments offered to individuals with a diagnosis of CP who have claims for musculoskeletal conditions as compared to similar patients who don\u2019t have CP. Her goal is to determine if adults with CP are a disparate health group.<\/p>\n<p>Presently, in North Carolina, adults with Medicaid (the majority of the adults with CP) are only allowed three therapy visits per year. \u201cI think the policy makers have to get on the ball here and change the Medicaid laws, but to do that, they\u2019re going to look to the research,\u201d Thorpe says. \u201cWe need research to show that providing physical therapy to individuals with cerebral palsy after the age of 21 is going to make a difference in their quality of life and their productivity to society.\u201d<\/p>\n<p>\u201cMy life revolves around medical stuff,\u201d Dowd says. \u201cFor me, it\u2019s like why not be involved in research? I\u2019m 50. We have the resources to fill in the gaps so that other individuals with CP might benefit. It\u2019s a give and take.\u201d<\/p>\n<p>&#8211;<em>Mary Lide Parker<\/em> for Endeavors<\/p>\n","protected":false},"excerpt":{"rendered":"<p>People with cerebral palsy (CP) are now living longer than they ever have before. But a longer life with CP can include more complex health issues that providers are struggling to accommodate. One physical therapist at UNC wants to change that. When Sarah Dowd was diagnosed with breast cancer in August 2013, the news hit &hellip; <a href=\"https:\/\/www.med.unc.edu\/healthsciences\/physical\/2017\/06\/striking-a-balance\/\" aria-label=\"Read more about Striking a Balance\">Read more<\/a><\/p>\n","protected":false},"author":55977,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[3],"tags":[],"class_list":["post-3117","post","type-post","status-publish","format-standard","hentry","category-news","odd"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Striking a Balance - Physical Therapy<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.med.unc.edu\/healthsciences\/physical\/2017\/06\/striking-a-balance\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Striking a Balance - Physical Therapy\" \/>\n<meta property=\"og:description\" content=\"People with cerebral palsy (CP) are now living longer than they ever have before. 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