MS Clinical Messenger Gateway Area Chapter
SPRING 2011
Multiple Sclerosis Care at the St. Louis VA Medical Center Gateway Area Chapter Clinical Advisory Committee Committee Chair Robert Naismith, M.D Barnes-Jewish Hospital John L. Trotter MS Center
Committee Members Elissa Held Bradford, PT St. John’s Sports & Therapy Gerard Erker, PhD SSM Rehab St. Mary’s Health Center
Angela Cass-Prost, PsyD, MEd;1,3,4 Stacy Duncan, LCSW;3 Penny James, OT, MS;1,2 Florian P. Thomas, MD, MA, PhD21,3,4 1 Multiple Sclerosis Center, Physical Medical & Rehabilitation, 3 Spinal Cord Injury/Dysfunction Service, St. Louis VA Medical Center; 4 Saint Louis University Department of Neurology & Psychiatry
Of the more than 400,000 people living with multiple sclerosis nationwide, we know that many are U.S. military veterans. More than 20,000 veterans living with MS are enrolled with the Veterans Health Administration (VA). In addition, a 2004 study identified 5,345 cases of MS among U.S. veterans who first entered military service between 1960 and 1994, and whose MS was deemed “service connected” by the Department of Veterans Affairs. At the St. Louis VA Medical Center a team of health care professionals has been assembled that focus on providing care to Veterans with MS that is comprehensive and provides essential services in a “one-stop shopping” model.
At the John Cochran Division team members include a psychologist, an occupational therapist, a Paralyzed Veterans of America Officer, a nurse, a Barbara Green, M.D. Veteran peer counselor, Saint Louis University Neurology residents, and a St. John’s Mercy Medical Center neurologist. During the course of a morning, Veterans will discuss different aspects of their care with all team members, and the team in turn West County MS Center communicates among itself. At the Jefferson Barracks Division the team is identical to that of the Spinal Cord Injury Service. Penny James OTR/L, MS Veteran’s Administration The frequency of patient visits is driven by their clinical situation. Veterans Medical Center are typically seen every 3 to 6 months, some come more often, others once a year. Veterans are encouraged to contact the MS Center when MS Michelle Keating, RN, OCN, MSCN symptoms change, so that they can be evaluated quickly. St. John’s Mercy Medical Center The MS Center serves not only the St. Louis VA, but also the Poplar Bluff, Missouri, and Marion, Illinois VAs. Veterans are seen following a referral by Barry Singer, M.D. Missouri Baptist Medical Center their VA primary care provider (PCP), typically within 30 days. Veterans are encouraged to make all relevant previous records about their MS available for the 1st visit, because symptoms and signs of MS may have come and Florian Thomas, M.D. gone (i.e. the relapse or attack), and therefore the documented history Saint Louis University of such attacks is essential when another doctor is asked to confirm the Health Sciences Center diagnosis.
The neurologist’s approach is to document in some detail any and all previous symptoms and signs; this helps him understand a person’s current complaints as representing something new such as an intercurrent illness, e.g. UTI, vs. an MS attack. It is important to correctly identify new or worse clinical features as an attack vs. disease progression. Another goal is the correct classification of clinical features as clinically isolated syndrome (CIS), relapsing remitting (RRMS), secondary progressive (SPMS), primary progressive (PPMS), relapsing progressive (RPMS), or neuromyelitis optica (NMO), to name the most common types of inflammatory demyelinating disease. Both goals are important in order to determine what appropriate treatment options exist and whether current therapy remains effective. Much time is spent on symptom analysis and treatment: Does lack of energy represent MS specific fatigue treatable with drugs such as amantadine or Provigil (modafinil)? Or does it result from ineffective sleep due to worries, pain, sleep apnea, or frequent trips to the bathroom? Or is it due to exhaustion from weakness and overexertion of weak muscles with possible good treatment response to an exercise program or a drug called Ampyra (dalfampridine)? Can troubles with driving be corrected by hand controls or do they reflect trouble with multi-tasking and reaction times? A VA driving evaluator works closely with the MS Center. The psychologist and neurologist have a strong interest in sexual dysfunction and assess for the specific issue, e.g. erectile dysfunction vs. low libido vs. depression, and work with veterans and significant others to find solutions which often combine drugs such as Viagra and counseling. Together with the occupational therapist they also address pain which may respond to physical therapy, medications, and various relaxation techniques. When veterans come to the VA with evidence of a possibly disabling relapse, they are often admitted to the John Cochran Neurology Service for care. Once treated and stabilized, they have the option of being transferred to Jefferson Barracks for rehabilitation, where their needs are addressed by a team of rehab therapists, physiatrists, internists, psychologists, social workers, pharmacists and dietitians, with the goal of readying veterans for discharge to their home. Our therapists may make recommendations for adaptations to a veteran’s home to make it safer and more accessible. The VA may be able to assist financially with home modifications. The MS Center staff works closely with consultants. For bladder control problems veterans are referred for urodynamic testing. When disability results in a sedentary lifestyle and weight gain, patients are encouraged to focus on exercise and weight control, and to work with their PCPs to optimize blood sugars. The psychologist focuses on the mind-body connection, tobacco use cessation, and the frequent co-occurrence of MS, anxiety and depression. Her many goals include to foster resilience, partner communication, encourage sleep hygiene, and good nutritional behavior. When depression and anxiety are severe, we refer patients to psychiatry. We work closely together and encourage the use of medications that are neutral in regards to memory, alertness and sexual function. We also identify isMS Clinical Messenger © 2011 sues with memory and refer patients for neuropsychological testing. Other common tests include magnetic resonance imaging (MRI) of the brain and spinal cord, which is done whenever there is a clinical need such as a change in symptoms, or in order to monitor treatment response. Certain laboratory tests are routinely done, some are driven by the medications a person takes (e.g. interferons), others by the fact that certain laboratory abnormalities are linked to conditions that can mimic features of MS such as abnormal thyroid or vitamin deficiencies. Because of increasing evidence of a link between Vitamin D and MS, this is also assayed. In persons with sexual dysfunction hormone studies are done.
Mission Statement: We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. A newsletter published by the National MS Society. 1867 Lackland Hill Parkway St. Louis, MO 63146 (314) 781-9020 or 1-800-344-4867 info@gatewaymssociety.org President: Phyllis Robsham Editor: Robert Naismith, M.D.
The MS Center benefits from the occupational therapist’s dual competencies in hand and arm function and in balance issues and thus is optimally qualified to address the gait imbalance which is a common problem in MS. She performs the 25 foot timed gait assessment with all patients at each visit, and the neurologist uses this data to assess the indication and eventual benefit of the drug Ampyra (dalfampridine). She determines if a Veteran might benefit from ongoing physical and/or occupational therapy. Individuals with swallowing or speech problems receive specialized care. The OT has a focus on cognitive rehab, which is often indicated in MS. The occupational therapist also addresses equipment needs and submits consults to Prosthetics, and refers patients for home evaluation/modification as well as home care. Veterans are eligible for a variety of equipment such as walkers, wheelchairs, hospital beds, and home modification, while their eligibility for VA paid-for nursing home care depends on the link between the onset of MS and their military service. A veteran peer volunteer is part of the team. He is able to familiarize veterans with resources available at the National MS Society, Gateway Area Chapter, and the VA that can help a veteran live a meaningful and productive life. When the peer volunteer and veteran with MS talk about how to enjoy life and their experiences with finding resources and problem-solving, a bond develops that promotes better physical, mental, social and emotional wellbeing. VA Service Eligibility PVA officers in the clinic as well as VA social workers can help veterans determine what health care and financial benefits they are entitled to. Some financial benefits may be payable retroactively. In order for a person’s MS to be deemed “service connected”, symptoms or signs consistent with MS must have been documented by a health care provider during or within 7 years after leaving military service. Even when MS is not service connected, other health issues may be. In the absence of service connected conditions most veterans are still entitled to some health care benefits. Depending on the degree of service-connectedness a veteran may qualify for services such as access to a VA contract nursing home, adult day care services at a nursing home, home modifications and vehicle modification. Other programs are available to veterans with certain disabilities, including home health aides, chore workers, and respite care, as well as payment for a caretaker/ family member to assist with a bowel and bladder program. The MS Center is the appropriate place for veterans with all stages of multiple sclerosis, whether they have a single attack (CIS), are ambulatory with the last MS attack being a distant memory, have persistent deficits but remain independent, or whether they have severe paraplegia or tetraplegia and are dependent on assistance from others in their homes or a nursing home. In general veterans with MS that receive care at John Cochran are those that are fairly independent, whereas those with higher levels of care needs receive services at the Jefferson Barracks SCI Service. There we also admit individuals with MS for a variety of reasons, e.g. rehabilitation after an acute MS attack, respite care, colonoscopies, annual evaluations, as well as for treatment of complications of impaired mobility such as pressure ulcers. Wellness, Exercise, and Support Group Programming for Veterans and their Caregivers Veterans with MS have access to numerous opportunities to explore their interest in athletic pursuit, healthy living, creative expression and social interaction with peers: Monthly MS support group meetings are organized with a focus on education, camaraderie, mutual support, and education. The group, led by an occupational therapist, meets on the 2nd Wednesday of the month at the St. Louis VA Medical Center, 1 Jefferson Barracks Drive, St. Louis, Missouri. The VA recently launched two new exciting initiatives for caregivers of veterans, with one specifically for caregivers of veterans with MS. The first is the National Caregivers Support Line, a telephone-based information line for family members and loved ones who provide care for veterans who are living with the effects
of war, disability, chronic illness, or aging. Licensed clinical social workers are available to answer questions, listen to concerns and link callers to the Caregiver Support Coordinator at their local VA Medical Center. The support line is open Monday-Friday 8 a.m. to 11 p.m. Eastern Time, and Saturday from 10:30 a.m. to 6 p.m. Eastern Time. For more information call 1-855-260-3274 or visit www.caregiver.va.gov. The second initiative is a monthly support and education conference call for caregivers of veterans with MS, where caregivers can connect and share their experiences. In addition to time for networking, educational topics and resources will also be discussed. The group meets the fourth Monday of every month from 8-9 p.m. ET (7-8 p.m. CT, 6-7 p.m. MT, 5-6 p.m. PT). The call-in number is 1-800-767-1750, access code 43157#. For more information on this monthly support group please contact the group’s facilitator, Maggie Kazmierski, LCSW-C at 1-800-464-6295, ext. 6095/410-605-7000. Veterans can engage in Arts & Crafts under the guidance of an occupational therapist at Jefferson Barracks. They work on painting, glass cutting and leather crafts. Supervised swimming and exercise programs are offered by Recreational Therapy. Within the MOVE program dietitians, therapists, psychologists assist veterans who wish to lose weight. Some veterans participate in the local and/or national summer wheelchair games which offer numerous athletic categories. Similarly at the Golden Age Games veterans over age 55 with or without a disability challenge one another in sport activities. At the local and national Creative Arts Festival veterans present their talents in Creative and Performing Arts. And at the Winter Sports Clinic in Colorado, veterans have the opportunity to participate in all types of winter sports with or without the use of adaptive equipment. If you are a veteran living with MS, the VA provides a nationwide system for access to care. The St. Louis VA MS Center is supported by the VA Multiple Sclerosis Centers of Excellence. For more information on VA healthcare services for Veterans living with MS, go to www.va.gov/ms/, www.stlouis.va.gov/services/sci.asp, and www.nationalmssociety.org Government Affairs & Advocacy g Government Programs g VA Benefits g Download VA handbook.
Upcoming Chapter Events and Programs
Family Evening at Grant’s Farm
St. Louis, MO: May 21 The program begins with an accessible tram ride and tour of Deer Park. The next stop is the Bauernhof, home of the world-renowned stables, and location of the evenings festivities including: meeting others with MS, photo with Clydesdales, food buffet and beverages, arts and crafts and live music. Cost before May 2 is $10/adult, $5/child and after May 2 it is $20/ adult, $10/child.
Women On The Move Luncheon
St. Louis, MO: May 5 Women throughout the St. Louis area are invited to join the movement, supporting amazing women that have been affected by MS through a premier fundraising luncheon. The goal of the luncheon is simple — to raise funds for and awareness of multiple sclerosis. The special guest speaker will be New York Times best-selling author Jacquelyn Mitchard.
Dean Team Automotive Challenge Walk MS St. Charles, MO: June 3-5 The Dean Team Automotive Challenge Walk MS 2011 is a three-day, 50-mile experience that tests the strength and spirit of its participants. Challenge Walk MS makes an extraordinary difference in the lives of the 6,600 people locally and 2.1 million worldwide living with multiple sclerosis. Challenge Walk MS is not just about walking. It is about being part of the national movement of thousands of people that are doing something BIG about MS. It takes place at Saint Charles Community College.
Progressive MS Symposium
Cape Girardeau, MO; Carbondale, IL; Columbia, MO; Fairview Heights, IL; St. Louis, MO: June 18 This program will directly address the issues of those living with progressive MS and research in the field of progressive MS. Program includes: Keynote speaker presentation by Dr. Lauren Krupp, lunch, resource fair. Cost: $10.