Editor’s Note: Friday, March 1, marks the start of MS Awareness Month, and Real World Health Care will be focusing on Secondary Progressive Multiple Sclerosis through the end of the month.
The words “progressive MS” can set off alarm bells. No one wants to hear that his or her MS is, or has become, progressive. The term “progressive MS” applies to different aspects of the disease, and it helps to know how it is being used. Approximately 85% of people are initially diagnosed with relapsing-remitting MS (RRMS).
At some point in their disease course, typically after 10-15 years, relapses become less frequent or stop occurring completely, the disease progresses more consistently but not necessarily more rapidly, and changes in function become more pronounced. When that happens, the person is said to have transitioned to secondary progressive MS (SPMS). Approximately 15 percent of people are initially diagnosed with primary progressive MS (PPMS). This group tends to experience gradual changes in symptoms and function over time with very few or no defined relapses. It is important for people to have an understanding of what these terms mean so that if they receive the word that they have progressive MS, they can begin to think about how to plan for any changes that may occur.
When symptoms worsen and abilities are affected, it can feel frustrating and frightening, particularly when a person feels he or she has been doing everything possible to manage the disease. Just when one seems to have a handle on MS and its symptoms, changes can occur, making the playing field feel totally different. Some people express fear of the future, seeing only a downhill slope. Others are disheartened and lose the oomph they need to try new ways to solve problems. This is a time when anger, grief, and anxiety may feel more intense. We urge all of you – individuals with MS, support partners and other family members – to step back and rethink the future. There are exciting research developments in the area of progressive MS, and there are many things you CAN do to optimize your health and well-being with progressive disease.
Managing Your MS – Using a Team Approach
Disease-modifying therapies (DMTs) are an important component of care for people with progressive MS. Most of the available DMTs are approved for relapsing forms of MS, which included those individuals with SPMS who continue to have occasional relapses. In addition, mitoxantrone is approved for SPMS and ocrelizumab is approved for PPMS. If you have been diagnosed with a progressive form of MS, be sure to discuss these treatment options with your healthcare provider.
Comprehensive MS care for a person with progressive disease also involves ongoing symptom management; rehabilitation to enhance function, comfort and safety; adaptive equipment to optimize mobility, independence and participation; and careful attention to optimizing mood and cognition.
Your best strategy is to assemble a team of professionals you trust and with whom you can communicate comfortably whenever there are changes in function and/or new symptoms. Your neurologist, nurse, physical or occupational therapist, and mental health professional can help you evaluate those changes and identify treatments, tools and resources to improve the situation. MS is a journey you do not need to travel alone.
Enhancing Your Health and Wellness
You are more than your MS – and your health and wellbeing are about more than treating your MS.
A healthy diet, regular exercise geared to your abilities and limitations, effective coping and stress management strategies and care attention to your mood are all essential to your overall quality of life. If you smoke, you have one more reason to quit: the research clearly shows that people who smoke have an increased risk of disease activity and progression.
There is now ample evidence that people with MS are more likely than the general population to have additional (‘co-morbid’) health conditions that impact their overall health and their MS. In particular, vascular conditions – including high blood pressure, high cholesterol, heart disease, diabetes – can accelerate the progression of MS and shorten a person’s lifespan. Therefore, prompt diagnosis and treatment of these conditions is important to comprehensive MS management. Regular check-ups and preventive screening as recommended for your age group can help you stay healthy and well.
Maintaining a Balanced Relationship
Healthy relationships with care partners are built on open communication and mutual give and take. Each person in the relationship needs to feel like a valued contributor. If your partnership starts to feel out of whack – with one person taking on too much of the doing and giving and the other feeling increasingly like a non-contributor, it’s time to talk about a redistribution of responsibilities. If your MS symptoms are making it difficult for you to do the things you used to do for your relationship and your household, think about swapping some things around.
Building Your Support Network – family, friends, medical team, employer, colleagues
Family, friends, colleagues, as well as your healthcare care team, are all essential parts of your support network. Stay connected with others, even if it means finding new activities, interests and opportunities for engagement; isolation isn’t good for your emotional or physical health!
Research in Progressive MS
Major clinical trials are underway, testing novel approaches to treating all forms of MS, including progressive MS. Scientists are learning new information about how MS damages the nervous system and cells and factors involved in the body’s ability to recover from injury. Early human trials of new therapies to repair myelin are already under way.
The International Progressive MS Alliance is focusing new resources on finding the answers that will lead to new treatments and ultimately, end progressive MS.
Studies are providing new evidence that exercise and rehabilitation can improve many functions and even help rewire and possibly build areas of the brain, and researchers are pursuing these leads to find the best ways people can maximize quality of life.
The journey with progressive MS will be different for every individual and will need to be managed differently. Success lies in building a support network, using all of the tools and resources available to you, and being creative and flexible in your problem-solving. You may need to do things differently than you did them before, but there’s no reason to sit on the sidelines. Be your own cheerleader but invite others onto your squad. It may feel difficult to cheer if the game isn’t going well, but on a basketball court, the cheerleaders don’t sit down if the score is not favorable. They cheer louder and get the fans involved too.
About the Authors
Rosalind Kalb, PhD, is a clinical psychologist who has specialized in MS care, support and education for over 30 years. She began her career in MS providing individual, group, and family therapy at the Medical Rehabilitation Research and Training Center for MS at the Albert Einstein College of Medicine and then at the MS Comprehensive Care Center in White Plains, NY. Dr. Kalb joined the National MS Society in 2000, creating online resources and educational materials for individuals and families living with MS and healthcare professionals until 2017. She continues her resource development work for the Society as a consultant. Dr. Kalb has written or edited multiple books including Multiple Sclerosis for Dummies (2nd ed.), Multiple Sclerosis: Understanding the Cognitive Challenges, Multiple Sclerosis: The Questions You Have; The Answers You Need, now in its 5th edition, and Multiple Sclerosis: A Guide for Families, now in its 3rd edition. Dr. Kalb has served as a Can Do program consultant since 2001.
Patricia Kennedy, RN, CNP, MSCN, a former Nurse Educator for Can Do MS, worked in the field of MS since 1987. For most of her MS career, she provided patient care. She served on the Board and was president of the International Organization of MS Nurses, served as a clinical consultant for the National MS Society and was a member of the Client Education Committee. She also was active in the Consortium of MS Centers and was on the editorial board of the International Journal of MS Care. She is the author of The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment and is now retired.