The goal of this paper is to evaluate how multiple sclerosis (MS) affects my life as a former certified therapeutic recreation specialist (CTRS). Although I conducted innovative therapeutic recreation programs and engaged in a variety of leisure activities, multiple sclerosis (MS) has forced me to adapt to life. Since my initial diagnosis, I have learned to cope with medical interventions, physical rehabilitation techniques, vocational challenges and accepting help with activities of daily living. I have gone from being a provider of services to being a receiver. My journey with multiple sclerosis presents me with opportunities to examine therapeutic recreation, to discover talents buried deeply in my psyche and to grow as a person. I am an MS subject, who upon measured analysis demonstrates, a decline in physical functioning as indicated by the Extended Disability Scale and Incapacity Status Scale. I am a patient who presents as a spastic quadriplegic. This paper reports on my increase in perceived cognitive deficits, my increase in anxiety, my decline in perceived health and quality of life. Regardless, my participation in recreational and vocational activities offers me a healthy outlet for dealing with the stressors of MS. The results of this study provide valuable information about effective ways to integrate and cope with chronic illness. This paper I wrote for myself, clinicians, care givers and patients who confront disabling challenges daily. I hope to provide the reader with the elemental requirements that foster hope, fulfillment and encouragement. Therapeutic Recreation is the motivating force that drives me to pursue life to its fullest.

A Certified Therapeutic Recreation Specialists (CTRS) provides leisure activities to individuals who present with a combination of physical, social, affective or cognitive deficits. These limitations, caused by a variety of disabling conditions, from Alzheimer’s disease to stroke, typify individuals that the CTRS works with. The CTRS chooses activities that ameliorate symptoms, teach adaptive technique and foster community reintegration.

A CTRS draws on experience, empathy and common sense when providing various Therapeutic Recreation (TR) interventions. The CTRS observes, assesses and develops a TR plan for each individual. The CTRS who presents with disabilities of a personal nature learns to consider his or her own challenges. My tenure prepared me for challenges and realities that impede leisure. Overcoming obstacles is my professional mantra. Bring the program to the individual. Break down barriers, provide comfort & individualism. I am the patient, a TR professional who benefits from TR…

Multiple Sclerosis is a progressive disease that attacks the central nervous system. There are approximately 450,000 persons in the United States with MS. Multiple Sclerosis. MS is the most common neurological disease diagnosed in young adults (ages 20 to 50) . For every person with muscular dystrophy or amyotrophic lateral sclerosis, there are more than ten people with multiple sclerosis. MS is more common among Caucasians than in other racial populations. Approximately two-thirds 2/3 of those diagnosed with MS are women. MS is devastating, progressive, disables people in the prime of their lives and is incurable. Recreation therapy professionals see very few cases where the MS actually patient improves. This presents challenges: goals written to maintain functional ability, maintain range of motion and socialization; goals modified continually as the disease progresses; objectives dynamic. Healing is paramount. Adaptive equipment, universal design, supports and attitude makes life bearable.

Multiple Sclerosis patients incur huge costs for care. Costs in excess of about $50,000.00 annually are not uncommon. Medicare and Medicaid rules constantly change making services for the MS patient difficult to access and subject to the political climate in Washington.
Although there is no cure for MS , the medication and treatments for it have grown substantially over the past ten years. Interferon drugs, chemo therapy, physical and occupational therapy are to treat disease progression. Other medications, including anti-depressants and anti-spasm drugs treat symptoms that interfere with activities of daily living. Magnetic Resonating Imaging and other tests used for diagnostic tools, lead to further treatments. Rehabilitation and education contribute to wellness.

Multiple Sclerosis is not a fatal disease but, is severely debilitating. Patients meet lifetime averages but with challenges that make life difficult and taxing at best. Caregivers face many challenges in preparing the patient for daily life. Whether it is activities of daily living, providing emotional support or paying bills, caregivers find themselves in the role of parent, spouse and helper. This leads to strained relationships in any family. Indeed, children in the family compete for attention from the primary caregiver who tends to the MS patient’s needs.

MS Society 2005
MS Foundation 2005

MSQR 9/2005