Our past few blog posts have been focusing on multiple sclerosis. You can learn more and sign up for the new NDNG Multiple Sclerosis Task Force Inaugural Newsletter; read a Patient’s Perspective post written by Elizabeth Jameson about her journey with MS; and explore the recent Research Spotlight from the 15 members of the ACRM Multiple Sclerosis Task Force. If you’re looking for further resources outside of ACRM, we recommend visiting the International Progressive MS Alliance website.
In today’s post, we’ll be providing some general advice about supporting your patients with MS. While specifically focused on Primary Progressive MS, or PPMS, much of the care suggestions are applicable to this subset of MS as well. Continue reading to learn more, and if you’d like to stay up to date on rehabilitation research or network with other professionals in the field of rehabilitation medicine, consider joining the Neurodegenerative Diseases Networking Group.
Telling Your Patient They Have MS
Like any diagnosis, how and when you tell your patient that they may be living with the symptoms of multiple sclerosis is a delicate conversation. You should inform your patient of the diagnosis as soon as it has been confirmed , and you should also share information about possible treatment options. Information should always be given in person, not over the phone or via email, and you should take into account your patient’s emotional state.
Many people come to the MS diagnosis after years of experiencing mysterious symptoms and for some, simply having a diagnosis can be a relief. But, of course, you can never anticipate someone else’s reaction. Be honest. Don’t try to soften the message by saying that they have “benign MS.” Patients need to know that about 15% of people with MS experience a primarily progressive course, which consists of relapses and periods of remission. The rate of progression varies from person to person. You can also provide them with rehabilitation research, support group information, and other resources.
Beginning Rehabilitation Interventions
As rehabilitation research has shown, rehabilitation is a vital part of MS management. The rehabilitation strategy is different for each individual, but should consist of a mix of physical, occupational, and speech therapy. Having guidance about symptom management and adaptations can change the way that your patients deal with their chronic condition. Ideally, their insurance would cover these interventions, but if your patients are unable to access this type of care, you should provide them with resources that they can access and practice on their own. As a health professional, though, it’s your job to recommend various rehabilitation interventions when you see that your patient would benefit. MS symptoms can change between relapses as well as over the course of the disease, and therapy should change accordingly.
Meeting With Family Members
It is up to the patient when to share their MS diagnosis with their loved ones. We encourage you to help your patients bring their family members into the process as early as possible. Often, loved ones will remember events that may be symptoms or earlier signs of the disease that the patient wrote off as being not a big deal. Beyond being able to gather a more cohesive medical history, rehabilitation research has shown that having a network of support is invaluable to patients as they navigate this chronic disease.
Assisting During Disease Progression
One of the best things you can do is see your patient on a regular basis. Having a six month or yearly appointment scheduled gives patients a marker that they can count on. Because MS is such an unpredictable disease, it’s important to give your patient whatever security you can provide, even if it’s something as seemingly simple as regular appointments where you can take time to record their symptoms and answer their questions and concerns. Assure them that you will be there to work with them to manage their symptoms and other problems that may arise because of the disease. Try to avoid giving the message that there is nothing more you can do — your patients need to know that you will be there for them, even if all you can do is provide more information and a listening ear.
As a physician, you should also be paying careful attention to your patient’s mood and how they are speaking about relationships with their family members. As the disease progresses, there is inevitable added stress to both the patient and caregivers. You may need to refer your patients to mental health professionals. Throughout the entire process, encourage your patients to develop a support network and form relationships with others suffering from MS.
If you found this post about supporting patients with MS, you may also be interested in joining the ACRM interdisciplinary Neurodegenerative Diseases Networking Group where you can continue conversations surrounding rehabilitation research. We’re always happy to have more members join our professional community.
Learn about the benefits of joining ACRM as well as member dues and membership application. The ACRM conference is another great way to network with colleagues and keep up with the latest trends in rehabilitation research and rehabilitation medicine.