Multiple Sclerosis (MS) is a chronic disease of the central nervous system that causes the immune system to attack the brain and spinal cord, disrupting signals to and from the brain. This damage can cause a range of symptoms including numbness, speech difficulties, mood changes, chronic pain, fatigue, blindness or paralysis.

Typically diagnosed between the ages of 20 and 40, MS is unpredictable and affects everyone differently. Some people experience steady and worsening symptoms that lead to increased disability over time, while a small group may only have mild symptoms, and many others experience symptoms that come and go through periods of remission.

Because of the early onset and irregularity of this disease, meeting a loved one’s changing needs can be very difficult. Whether you’re a family member or friend supporting someone with MS, you may find these tips helpful—especially if this is a recent diagnosis and you are new to your role.

Educate Yourself

Learning about Multiple Sclerosis can make you feel better prepared for the future, more confident and compassionate towards the person in your care. Your loved one may struggle to communicate in social situations, experience profound and debilitating fatigue or extremely uncomfortable sensory symptoms like itching and burning. Symptoms of MS aren’t always visible and can change from day, so being familiar with the possible outcomes can help you in your career role.

Be an Advocate

As caregiver, you are a vital part of your loved one’s health team. Go to medical appointments, ask questions if there’s anything you don’t understand and try to pay close attention to provide an extra set of eyes and ears during an overwhelming time. Keep track of medications, list contact information in a central place, and note changes in symptoms or behaviour, as no one knows your loved one better than you.

Stay Flexible

The person you support may need assistance with certain tasks some days and other times they will not. Allow your role to adjust and change along with their care needs and encourage independence whenever possible. This can be very challenging so try to check in regularly, observe your loved one’s abilities before stepping in and try to avoid getting defensive if they deny your support.

Take Care of You

Caring for someone with a chronic disease can be rewarding but it can also be mentally and physically exhausting. Your loved one needs a healthy care partner and taking care of you is as important as supporting others. Give yourself credit for your hard work, prioritize physical activity and sleep, enjoy a balanced diet and see your doctor for regular check-ups. Make sure you reach out for help, find time to do the things you enjoy and connect with other caregivers through online or in-person support groups.

People living with MS often need help with daily care and their family and friends may not be able to do it alone. VHA Home HealthCare’s Private Services team may be able to help. Call (416) 489-2500 ext. 4649 or contact them by email at privateservices@vha.ca for more information.