How to get the most from your visit to the ALS Center For ALS patients, quality of living is linked directly to the timeliness and appropriateness of the care they receive, beginning with diagnosis and continuing through each stage of ALS. The ALS Center's multidisciplinary team, under the direction of Hiroshi Mitsumoto, MD, creates a plan for comprehensive treatment in a compassionate setting that addresses the patient's individual needs--because each person with ALS is different. Although it is not possible to erase the extreme muscle weakness of ALS, team members work to maintain and sometimes to restore muscle function and the ability to perform daily activities. ALS neurologists, nurse practitioners, physical therapists, occupational therapists, speech-language pathologists, psychologists, psychiatrists, social workers, nutritionists, pulmonologists, and gastroenterologists collaborate to promote the highest functioning possible, to support independence, and to maintain quality of life for patients throughout the course of their illness. The Eleanor and Lou Gehrig MDA/ALS Research Center is one of the largest and longest running ALS Centers in the United States. We provide diagnostic expertise, clinical research programs, and multidisciplinary follow-up care to patients with ALS and other motor neuron diseases. Since we are a tertiary care center, it is very important to maintain contact with your primary care physician for general medical care and for specific referrals for your ALS management. We hope this column will assist you in understating how to best use our services and find the information, support, and guidance you are seeking. Visits to the Center Multidisciplinary visits typically occur every 3 months, though this may vary depending on several factors. During your quarterly visits to the Center, you will often meet with as many as 8 team members in the course of 2 to 3 hours. This lengthy visit should afford you and your family the opportunity to meet with specific members of the team who can address your questions, concerns, and needs. The concept of "one-stop" team visits is very different from the traditional "doctor's visit," and as such it can be an overwhelming experience if you are not prepared and focused. We offer the following recommendations for team visit preparation: 1. Have goals for the visit. Often we will ask you at the beginning of the session what you are hoping to accomplish. If we don't ask, feel free to tell us. Please come to your Center visit with a list of items you would like to address. For example: learning more about changes that you are experiencing and what can be done to help you adjust, adapt, or improve function clinical trials update financial planning process referrals and communication with local health care providers (eg, wheelchair evaluation, out-patient OT) medication adjustments and/or renewals symptom management: sleep, bowel function, mobility, work, mood, etc. 2. Take notes. Come to clinic with a notepad and pen so that you can take detailed notes. At the time of the visit, information is flowing between you and the team members. Our feedback from other patients and families tells us that once you get home you may not recall a lot of what was said. The notes will help you recall and track the "action items" for which you or your caregiver are responsible, as well as what the clinical team will be doing on your behalf. 3. Stay in touch. Review how to get in touch and stay in touch with team members. Communication in between visits is expected and helpful at times. Make sure that you have phone numbers and email addresses for all team members that you might need to contact between visits. Phone calls and email are both acceptable ways of contacting members of the team. Ask for business cards from the team members, as it is often challenging to remember who is who after such a long clinic visit. 4. Plan your return visit. Even when things are progressing slowly and you don't anticipate a lot of changes over the next three months, please make your next appointment before you leave. Once the diagnostic process is complete, team visits will generally occur every three months. Even if you are unsure of your schedule around the time of the suggested return visit, make the appointment (you can always change it to a later time). Between Visits to the Center Here are some tips for getting the most out of the ALS Center between your regularly scheduled quarterly visits: 1. Keep a running log of issues and concerns that you want addressedby individual members of the team. Divide the list into 2 columns--one column for long-term issues and one for concerns needing more immediate attention. The long-term issues will include results from the action items at your last visit to the Center. The issues needing more immediate attention can be addressed best by us in batches-that is, please see if you can wait to call or email until after you have organized your action items so that they can be addressed in a single call or email. 2. Communication is essential! The nurse clinicians and physical therapists at the Center also provide ALS case management services on your behalf. We spend a good deal of our time contacting your insurance company to advocate for the best services for you, both for present and future needs. Please make it a habit to communicate to us the following information in a timely way. Communication between the Center, insurance company, and you is very important to your plan of care and your getting what you need. It would therefore be important to know: Name and phone number of your insurance case manager. Name of providers of all services that you are receiving in your community: eg, respiratory and medical equipment providers, local rehab therapy providers, home services agencies, etc. If we did not set up the service for you, we still need to know what you are receiving so we don't duplicate efforts or services on your behalf. This information will also assist us in confirming and directing the clinical plan of care as it relates to you. 3. Identify your primary nurse clinician. In order to promote continuity of care at the Center, we assign each patient a primary nurse clinician. She will triage your calls, medical management, and referrals under the supervision of the attending physician. When you call the Center, other than to make or change appointments, ask for your primary nurse by name. If your primary nurse is out that day, leave a voice mail message, email her, or call back the next day. Calls to the Center are normally returned within 24 to 48 hours. 4. Prescription medication refills should be called in to the main number at the Center by the your pharmacy. Unless you need written prescriptions for mail-in purposes, please have your pharmacy call us to verify refills. Please give 2 weeks' advance notice for refills. We hope this has helped you to begin to understand how to utilize the ALS team services at our Center. Your time and energy are valuable-our goal is to identify how we may assist you best. In our next issue of the Newsletter we will identify our team members and the role they play in your care.