- Write down your questions! The more you know yourself, the better you can organize the care. So use doctor visits and other appointments to ask all your questions. So write down questions and take them with you if you have an appointment somewhere.
- Think ahead! Although it can be confronting, it’s best to arrange resources and aids in advance. Procedures for requesting and arranging these matters often take time, time that is not available when the need for help or care suddenly arises.
- Take a trusted person with you to your appointment. Together, you listen better to the multitude of information you receive.
- Inquire about the next step in a timely manner. ALS is unpredictable, but NMRCs often have enough experience to assess certain paths. So are there new symptoms or things that suddenly become more difficult? Then, take contact in time to anticipate what might or should happen in the future.
- Follow-up NMRC: A NMRC can help you with requests, information, advice, referrals and regulations. A good follow-up there often also ensures a good evolution in care and support.
- General practitioner contact: Try to maintain good and regular contact with your general practitioner. They notice certain issues faster, have contacts for referrals and are often keen to get involved themselves.
The ALS Liga case managers can help you prepare for medical consultations or are gladly listening to you if, after a consultation, there are still uncertainties for you.