When a friend or loved one is diagnosed with multiple sclerosis (MS), most people tend to have a similar reaction: What does this mean?
MS is an unpredictable, often debilitating disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. MS affects at least two to three times more women than men. The cause of MS is unknown and according to the National Multiple Sclerosis Society, there are more than 2.3 million people affected by MS worldwide.
According to Joseph R. Berger, MD, professor of Neurology at Penn Medicine, and Michael Pappano, MSW, LCSW, social worker at the Penn MS Center, the first step is to understand that MS is an illness that people can learn to live with.
Although it can be difficult to take in at first, it’s important to note that MS is not a death sentence,” says Pappano.
Dr. Berger adds that often the perception of the disease is worse than the reality.
Dr. Berger and Pappano explain that while there is no cure for MS, the disease has become highly manageable with therapies that not only accelerate the recovery from new symptoms due to a relapse, but also therapies that decrease the frequency of disease relapses and activity.
Tips for caregivers
As you are helping your loved one manage their diagnosis, says Pappano, there are a few important tips for caregivers to know to help from becoming overwhelmed:
- Inform and Educate. MS can progress and present differently depending on the individual. The health professionals who help manage MS can identify the best methods of care based on your loved one’s condition. You can also seek information from reliable organizations, such as National Multiple Sclerosis Society, Multiple Sclerosis Association of America or the Multiple Sclerosis Foundation.
- Respect Autonomy. Most people living with MS are quite independent. Talk with your loved one to determine which types of assistance are most helpful. Look to medical providers, therapists and MS organizations for advice.
- Set Realistic Goals. Help your loved one understand his or her limitations and their corresponding goals. Be sure to respect their desire to maintain an active lifestyle.
- Expand Your Network. Establish a community of trusted friends, family members and support groups. This network is beneficial when you or your loved one needs assistance.
- Take Care of Yourself. Without your own good health, it is not possible for you to advocate for your loved one. Give yourself credit for your hard work and take breaks when you need to. Supporting and caring for your loved one is invaluable and it is best done when you, too, are in good health.
Pappano adds that the most important thing to remember is to celebrate life.
No one knows the course of your loved one’s illness,” says Pappano. “Spend time with the person you love, appreciating who they are now, rather than worrying about what might happen in the future.”
Berger and Pappano agree that finding a comprehensive MS center, like the Penn MS Center, is beneficial for the patient and their caregiver.
The Penn MS Center provides care to patients with MS with a multispecialty team staffed by neurologists, nurses, social workers, a dedicated pharmacist, and other Penn physicians and health care providers. Patients receive all of their treatment and therapy in one location that allows for the most coordinated care possible