A Caregiver’s Guide to Navigating Multiple Sclerosis

Older adults with multiple sclerosis (MS) are living with an illness that comes with a lot of uncertainty and change. That can make life challenging for them and for those caring for them.

Jessica Hegg from Vive Health explains what MS is and what symptoms to expect. She also shares tips that help you cope with symptoms and major lifestyle changes associated with MS.

With varying types and progressions as well as a vast array of differing symptoms that can flare up, go into remission, disappear altogether, or simply worsen over time, living with MS and caring for someone with MS can feel like a roller coaster.

These unknowns can leave you and your loved one feeling blindsided. Being prepared with a little knowledge and the right tips and tools can help.

What is Multiple Sclerosis (MS)?

MS is an autoimmune disorder of the central nervous system. Scientifically speaking, in someone with MS, the body starts to attack the myelin sheath, the special protective membrane coating the spinal cord and nerve endings.

The myelin sheath helps signals sent back and forth between the brain and the body reach their destinations quickly and efficiently.

As MS progresses, the myelin sheath begins to break down, leading to problems with signal transmission. Nerve fibers can become damaged and die off, lesions can form on the brain and spinal cord, and bodily functions can be affected.

7 Common Symptoms of Multiple Sclerosis (MS)

MS can progress slowly over time, or symptoms can come and go (relapse and remission). Common symptoms include:

1. Tremors

Tremors that appear when a person with MS moves a limb, such as reaching for something, are called intention tremors. Postural tremors happen in a limb when someone is sitting or standing.

Tremors and muscle spasticity are common among MS patients and can be treated with pharmacological aids, physical therapy, and items like weighted blankets.

2. Difficulty swallowing

Dysphagia is difficulty or discomfort with swallowing food and drink. When someone has dysphagia, doctors and speech therapists may recommend modified diets to make swallowing easier and prevent aspiration (inhaling food or liquid particles into the lungs).

3. Incontinence

As MS progresses, some people may experience a loss of bladder and bowel function, which requires them to use incontinence briefs or keep a portable commode by their bed.

Incontinence and urinary retention issues increase the risk for urinary tract infections.

4. Fatigue

Mild to extreme fatigue is a hallmark characteristic of advancing MS and can come on suddenly as a wave for some people or can be a day-to-day reality for others.

Fatigue can result from symptoms like an overworked brain, stress, muscles being exhausted from spasming, tremors, depression, and side effects from medicine.

5. Trouble with coordination

Worsening balance issues can negatively impact agility, coordination, and mobility. Increased risk of falling and difficulty walking can occur as your older adult experiences fatigue, muscle weakness, numbness, pain, or dizziness.

Equipment like mobility aids, shower chairs for senior care, grab bars, and safety railings can make the home environment safer for someone with MS.

6. Impaired vision

Double vision or partial to complete vision impairment in one or both eyes may occur during an MS flare-up. Involuntary, jumpy eye movements called Nystagmus tremors may also occur, causing reduced depth perception and some vision loss.

7. Additional multiple sclerosis symptoms

Other symptoms of MS may include itching, burning, and feelings of pins and needles in arms and legs from ongoing nerve damage. People with MS may also have migraines and difficulty speaking.

National Resources for MS Caregiver Support

Navigating the daily challenges of multiple sclerosis doesn't have to be a solo journey. While managing physical symptoms is a top priority, having access to specialized tools, financial assistance, and expert guidance can significantly ease the caregiving burden.

To help you find the right support, we’ve compared the key services provided by the two leading national organizations dedicated to the MS community: the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America (MSAA).

6 Tips for Caring for Someone With Multiple Sclerosis (MS)

If you’re caring for someone with MS, you may have to take on a variety of nursing-type tasks. These could include:

1. Monitoring vitals

Keeping track of daily vitals like blood pressure, temperature, pain levels, oxygen saturation levels, and respiration rate helps caregivers notice when something is not right and get medical help if the person with MS isn’t feeling well.

2. Managing incontinence

Losing bladder and bowel function can be heartbreaking, but being prepared for it can make a huge difference.

Discussing incontinence with their doctor, finding well-fitting incontinence briefs, investing in a bedside commode, and stocking up on supplies like underpads and wipes will help everyone adjust more easily.

3. Preventing bedsores

Someone with progressing MS who gradually loses their mobility may end up spending more and more time in bed, in a recliner, or in a wheelchair.

Preventing bedsores with frequent repositioning, good hygiene, healthy nutrition, and daily body scans will be a top priority for maintaining their older adult’s health and comfort.

4. Managing depression

Like with many chronic illnesses, loneliness, anxiety, and depression are mental health realities that need to be addressed.

Caregivers can be mindful of behavior changes and social isolation their older adult is experiencing and get them help as needed.

5. Helping with fatigue and weakness

Caregivers can help their older adult manage fatigue and weakness by sticking to daily routines, discussing medication side effects with doctors, and making time for low-impact daily exercises such as walking, yoga, and swimming.

6. Managing loss of mobility

Going to physical therapy, supporting an older adult when they stand or walk, and reducing fall risks at home can make coping with the physical changes easier for both of you.

Final Thoughts on Multiple Sclerosis (MS)

Caring for someone with Multiple Sclerosis is a marathon of adaptation, not a sprint with a fixed finish line. It demands that you learn to bend without breaking, finding strength in flexibility and patience in the face of unpredictability.

The path is undoubtedly challenging, but by grounding yourself in understanding, you build a foundation of care that is both resilient and deeply human.

Remember, your role is not to cure MS, but to navigate its landscape alongside your loved one. In doing so, you provide something medicine cannot: the unwavering presence, steady support, and profound dignity that transforms daily care from a series of tasks into a continuous act of love.

Recommended for you:

• 7 Meaningful Ways to Support Seniors with Chronic Illness
• 3 Helpful Tips for Bed Sores Prevention and 2 Common Treatments
• Incontinence – Tips for Changing an Adult Diaper [Video]

 

Guest contributor: Jessica Hegg is the content manager at ViveHealth. Interested in all things related to a healthy lifestyle, she works to share valuable information to help others overcome obstacles and improve their quality of life.