Friends, partners, parents, and children all come together when someone they love is diagnosed with Multiple Sclerosis (MS). MS can be a difficult diagnosis, not just for the patient, but for their family and close ones, and many people ask their neurologist, “How do I care for someone I love with MS?”
Caring for someone with MS involves patience, understanding, and flexibility. A strong community can help uplift spirits, maintain normalcy, and remind the patient that there is hope and much life to live after a multiple sclerosis diagnosis.
If you are a caregiver or close friend to someone with MS, these tips on how to care for a loved one with MS will help. Learn how to show up, what to consider, and where the limitations are. Together, there is a bright and hopeful future.
Note: Content on neuromedpa.com is not doctor’s advice and should not be taken as such. Always contact your primary care doctor for medical services, diagnosis, treatment, and more.
What is MS: Multiple Sclerosis
MS is short for Multiple Sclerosis, a chronic disease that causes the immune system to attack the nerves, affecting the brain, spinal cord, and limbs. MS patients will deal with inflammation, overheating, unexpected pain, and fatigue, to name a few of the common symptoms.
MS does not have a clear trajectory of progression. It can vary based on multiple factors and is different for every patient. Working closely with a neurologist is the best way to manage MS. There is no cure, but it can be treated to manage and reduce symptoms.
Get tips on how to find the right neurologist to help with your treatment.
Symptoms of Multiple Sclerosis
MS symptoms vary from patient to patient. Some MS symptoms advance rapidly while others are slow-moving. Your local neurologist can advise on the disease’s progression, what symptoms to watch for, and what each patient is most at risk of experiencing.
In General, MS Symptoms Include:
- Fatigue
- Tingling
- Vision changes
- Unsteadiness
- Muscle stiffness
- Muscle spasms
- Tightness around the torso
- Chronic pain
- Itching
- Weakness
- Numbness
- Cognitive changes
Other Conditions Secondary to MS
Because MS is a chronic condition that has a wide array of symptoms and can be unpredictable, it can cause secondary conditions. Patients and caregivers alike need to work closely with doctors and neurologists to manage all conditions. Do not let MS or any secondary conditions scare you away from living life, but learn what to look for and how to manage the symptoms together.
Paralysis and Mobility Challenges
Because MS affects the nerves and spinal cord, MS patients may also face paralysis and/or mobility changes, especially as the disease progresses. Learn more about common nerve disorders.
Depression and Mood Swings
The unpredictability of the diagnosis and the lifestyle changes can be emotionally challenging. It is not unusual for patients to experience depression or mood swings based on their day to day capabilities and pain management.
Epilepsy and Seizures
Up to 5% of patients diagnosed with MS will also experience seizures. Although the direct cause is unknown, a neurologist can help manage the epilepsy for all involved.
Bladder, Bowel Dysfunction
Some patients with MS will have their bladder and bowel affected because of MS and the nerve changes. This may include frequent urination, constipation, or other changes that should be monitored.
Cognitive Changes
MS affects the brain and can affect speech, cognitive function, and other changes. Your neurologist will monitor these changes with cognitive testing and provide guidance on the best course of action to move forward.
Caring for Someone with MS
Be Patient in the Beginning
A diagnosis of MS can take some time to handle and prepare for. As a caregiver, be patient with your loved one as they process, learn, and decide their next steps. Don’t pressure them at the beginning to try too much or change too much.
Wait for them to talk to you and be ready when they are. Although it may feel like everything has to happen immediately, there is time to slow down and take it one day at a time.
Stay Informed
If you are the primary caregiver to a patient with MS, it is important to stay informed. Work with their doctors, neurologists, and other care team members to learn about reliable resources, what comes next, and how they recommend you help.
As a friend or loved one, you can ask them or their caregiver for resources and ask for updates. Don’t be afraid to become familiar with the diagnosis to help along the way.
Maintain Normalacy
Everyone will need to make adjustments around an MS diagnosis, but it doesn’t have to consume everything all at once. What’s important is to help maintain normalcy while shifting adjustments and making accommodations. Still making plans, hanging out, and reaching out will help a patient feel normal, positive, and hopeful.
Less is More
Fatigue is a real symptom of MS that may feel limiting to both the patient and their loved ones. Help your loved one relax on their more fatigued days and find new ways to connect that are less dependent on strenuous activities. For harder days, have a plan in place with your community and friend network to support them so they still feel included without pushing their boundaries.
Watch the Weather
Patients with MS will experience more overheating, sweating, fatigue, and inflammation due to the weather. You want to experience the sun and good weather but avoid hot days or activities that are particularly warm. Pivot to inside, shaded, or AC’ed activities when possible and take advantage of cooler days when they are available.
Plan the Day
For a lot of patients with chronic pain, fatigue can be worsened on bad days by taking on a lot of planning, researching, communicating, or remembering. As a caregiver, friend, or partner, you can help with planning activities, setting a schedule for the day, and setting reminder alarms. These small tasks can go a long way towards conserving energy.
Embrace Flexibility
Things may change from day to day with a patient with MS. Fatigue symptoms, overheating, and more can change without much warning, altering plans, sleeping patterns, appetite, mobility, and more.
Learn how to adapt, be flexible, and present for the current moment when living with or hanging out with someone with MS. Accept their cancellations when they have to happen and be open to last minute planning if they are having a good day.
You’re a Loved One First
Don’t let the caregiver role overtake your relationship, whatever it may be. Take care of yourself and protect your own energy levels and continue to be a partner, sibling, friend, or parent to your loved one.
This connection will help them stay more positive, grounded, and hopeful than losing that connection to a caregiver role. The more present you can be, the better for all.
Get MS Treatment in Maryland
Neurological Medicine, P.A. has two locations in Maryland to serve patients and their families better. We help with MS treatment, symptom management, and nerve testing in Maryland. With experienced doctors, a friendly staff, and accessible locations, we help patients and their families with MS come together for a brighter future.
Call today for more information. Find us in Greenbelt, MD and Laurel, MD. Visit our New Patient Resources Page for more information on making an appointment.
More Resources
Neurological Medicine, P.A.
Neurological Medicine, P.A., provides comprehensive diagnostic and treatment services to patients with conditions affecting the brain, spinal cord, nerves, and muscles. We have been serving the Prince George’s and Montgomery County area since 1975, with two offices: Greenbelt and Laurel. We offer complete adult neurological care as well as in-office neurodiagnostic studies.
