What Are the Biggest Challenges Patients and Families Have Adjusting to Life with MS?

Question:  What are the biggest challenges that patients and their families have with adjusting to MS? Since this is a virtual center, what technology would help families?

Answer:  This is a very difficult question to answer with a single response. In fact the complexity of the both the question and the answer is the main reason for this website. The challenges adjusting to MS vary from patient to patient and over the course of the illness. The biggest challenge is learning to deal with uncertainly and incomplete information. The disease is so variable that it is difficult to predict either the course or the response to treatments. The best thing to do in this circumstance is to try and follow some simple rules:

1. Educate yourself and take an active approach in your care

2. Set defined goals beginning with those that are both most important and most attainable; in fact with every thing you do, whether it be taking a prescribed medication, going to the YMCA to work out or going back to school, try to develop short and long range goals. This allows you to become more actively involved and will enhance the chances for success.

3. Do not fixate on a particular solution until a problem has been fully analyzed and all information collected. Patients often come to me asking to get a particular medication or device or type of therapy and do not even tell me what problem they are trying to solve. This is most common with MS disease modifying therapies but can occur with almost request. When I ask them what problem they are trying to solve, examine them and explain the best options they are often amazed at the simplicity of the offered solutions. However, if they arrive determined to have their way, the outcome is usually less than satisfactory.

4. Break up time into useful blocks for reassessment of specific goals. For instance, if you just started a new medication for your MS consider the first 3 months as the time to get acclimated managing any side effects associated with the treatment and determining if you can fit this treatment into your life. This is not the time to be wondering if the treatment is working; that will come later.

5. Do not overly focus on those things you can not control

6. Surround yourself with supportive friends, family and health care providers that help you follow these rules and lift you up when you are down.

My hope is that this virtual MS Center provides one of the ways for you and your families to follow these rules and adjust to your MS over time.