Take Care of Yourself When You're the Caregiver

My husband is my number one caregiver. He does most of the grocery shopping and carrying of heavy or large items up and down the stairs at home. I’m capable of doing these things, but splitting the work between us is very nice and my osteoarthritic knees are thankful.

In recent months, my husband and I have been occupied with taking care of his mother. She has experienced a series of unfortunate health complications that require us to devote a significant amount of time tending to her needs. As a consequence, there has been much less time available to tend to my own.

This experience is teaching me the importance of taking care myself first before I can be of much help to someone else. This goes beyond the familiar analogy of putting on your own oxygen mask before assisting others in an airplane emergency. As your mental and physical energy are depleted, you must focus on your own needs to protect against sheer exhaustion, potential relapse, or full collapse.

As people with chronic illnesses, the quality of our caring is rich, but our capacity is limited. If we don’t take care of ourselves, we run the risk of slamming into that proverbial wall.

Ways to care for yourself

• Focus on your own health and wellness. Eat right, sleep well, and exercise. It’s too easy to skip meals or become sedentary when you are sitting for hours in hospital waiting rooms, doctors’ offices, or patient rooms. Keep up with your own medical needs.

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Being a Caregiver When You Have a Chronic Illness

Using Tai Chi To Help MS Symptoms

Tai Chi, also called Tai Chi Chuan, is an ancient Chinese martial art that has evolved into a multiple-element form of exercise, featuring slow, gentle, dance-like movements that encourage deep breathing and relaxation, improve balance, and strengthen muscles and joints. I’ve heard Tai Chi referred to as “meditation in motion.” One benefit of Tai Chi is that is doesn’t require any special clothing or equipment. It is one of the mind-body therapies in complementary and alternative medicine that begins where you are and doesn’t push you beyond your abilities, but does encourage you to explore the edges of your comfort zones.

How does Tai Chi help MS?

Several studies have examined the effect of Tai Chi on different aspects of living with MS and its symptoms. In a systematic review of the literature, researchers found evidence that supports the effectiveness of Tai Chi on improving quality of life and functional balance in people living with MS patients. A small number of studies also reported the positive effect of Tai Chi on flexibility, leg strength, gait, and pain. The effect of Tai Chi on fatigue, however, is inconsistent across studies.

Tai Chi and quality of life in MS

Quality of life (QOL) is a helpful measurement in MS studies because it encompasses physical, material, social, and emotional well-being, as well as personal development and physical and social activity. Five studies examining the effect of Tai Chi on QOL in MS were included in this systematic review. In general, MS patients who engaged in Tai Chi sessions over three- to twelve-week time periods experienced significant improvements on subscales of QOL such as pain, emotional well-being, energy, vitality, social function, health distress, physical health, mental health, and overall QOL.

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Benefits of Tai Chi for Multiple Sclerosis

From Couch Potato To Outdoor Cyclist

On the bike, I couldn’t ride for even two or three minutes without my legs feeling numb and spastic due to MS. So I decided to back off my efforts and count revolutions instead of minutes with 300 spins as my short-term goal (150 for each leg). If I cycled for 300 rotations at a steady, slow pace, it would equal about five minutes.

That was the beginning of my long transformation from couch potato to outdoor cyclist. During that first year, I slowly transitioned from counting revolutions to counting minutes to counting miles. I also started counting calories too. After a year, I lost 50 pounds and could ride for 45 minutes on the exercise bike and still feel good afterward.


I started to dream of riding a real bike again. But I hadn’t done so since college, and I didn’t have a bike. Many months later, I went shopping. The image of me trying out bikes when I hadn’t even been on one in many years was funny. I eventually chose one and began riding it short distances. Just like with the exercise bike, I started with small goals: down the street and back, one mile, two miles, 15 minutes, 30 minutes, and more.

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From Couch Potato to Outdoor Cyclist

Keep Your Medicine Drawer Organized

One of the most common themes across different chronic disease communities is the large number of medications and supplements we often use. Some of us might keep those medication bottles in a box, a drawer, or a pretty flowered travel bag. My bag is full of current medications, extra bottles of supplements, drugs that are used only when I need them, and prescriptions I no longer use. For the medications that I use “as needed,” there are several bottles that tend to sit around for lengthy periods of time, the medication eventually expiring.

Keeping track of your medications can be challenging, particularly if you take several for different purposes. Sometimes it can be tricky to balance convenience — having all the medication you might want on hand at any given time — with safety — clearing out all of the half-used bottles of unwanted or expired drugs. Here are six tips for managing your medications:

1. Understand your medication
Keep a master list of all medications and supplements you use and carry this list with you in a wallet or pulse. Include information detailing: name of drug; purpose of the drug; correct dosage; how, when, and how long to take the drug; drug storage requirements; any special instructions; possible side effects and drug interactions to be aware of. Your list should also include the date it was last updated.


2. Use one pharmacy

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Clean Out and Organize Your Medicine Drawer

Does Your Neurologist Talk About Exercise?

Exercise is an important part of multiple sclerosis management. Exercise not only helps cardiovascular health, it can increase strength and flexibility, reduce spasticity and fatigue, and improve self-efficacy and mental well-being. Recent research has shown that exercise also can promote remyelination and brain repair in mouse studies.

Exercise: It does a body good

What constitutes exercise may differ dramatically from one person with MS to another. What is an appropriate exercise for me may be dangerous and highly inappropriate for you, or might be sorely insufficient and too easy for someone else with greater physical abilities than either of us. Just as people with MS are unique with our symptoms and disease course, our individual needs for exercise and/or rehabilitation can vary considerably as well. There is no one-size-fits-all when it comes to physical activity.

Does your doctor talk to you about exercise?

I asked a few MS friends if their doctors ever discussed exercise recommendations. The responses ranged from “I would just like for my neurologist to give me the hope of doing exercise but he's already written it off and condemned me to a chair!” to “I don't really expect any from a neuro, but I do expect my neuro to recommend me to a PT/OT that can with help me with that.”

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Should Doctors Talk More About Exercise to MS Patients?

The Gut and Multiple Sclerosis

Inside the digestive system is a rainforest of rich microbiota that help to process nutrients, protect us from infection, maintain protective barriers in the gut, trigger the immune system, and even communicate with the brain.

To get a sense of how bacteria does this, first understand that microbes are everywhere. They live in the soil, in water, on our skin, and inside our bodies. These tiny organisms outnumber our own cells by a ratio of 10 to one and research suggests that the human genome has incorporated bits of DNA from the genes of various microbes. There are an estimated 500,000 metabolites in our blood derived from the microbiome.

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The Gut and MS: Why What You Eat Matters

Exercise is Good for Mental Health and Brain Volume

Two unrelated open-access studies, published recently online, emphasize how exercise may benefit people living with multiple sclerosis. One study demonstrated that physical activity is associated with increased brain volume and the other showed that increased physical activity is associated with improved mental health and higher quality of life for MS patients.

Physical activity and brain volume

In a recent study published in Behavioural Neurology, a team of researchers from the University of Illinois at Urbana-Champaign identified an association between increased physical activity and higher volumes of brain tissue as measured by MRI scan in people with MS.

Physical activity was measured by an accelerometer worn for 7 consecutive days with data categorized by time spent in sedentary behavior, light physical activity, and moderate-to-vigorous physical activity. Data collected on days where the participant failed to wear the device for ≥ 10 hours without periods of inactivity exceeding 60 minutes (indicative of noncompliance) were excluded from the analysis.

Results from the study, involving 39 people with MS (30 female, 9 male; age 48.7 ± 9.6; disease duration 10.3 ± 8.5; EDSS 4.5 ± 2.5; and 77% with relapsing-remitting MS disease course), provide the first evidence that moderate-to-vigorous physical activity is associated, not only with volumes of whole brain gray and white matter but also, with deep gray matter structures that are involved in motor and cognitive functions in MS.¹

In other words, moderate-to-vigorous physical activity (MVPA) seems to protect against brain atrophy in people with MS, including areas of the brain connected to motor and cognitive functions. No associations were found between sedentary behavior and light physical activity with MRI outcomes.

Authors conclude that this study “supports the possibility that enhancing physical activity, specifically MVPA, could contribute to brain health in people with MS [which is] important considering brain volume is correlated with disability status and cognitive impairment in MS.”

Physical activity and mental health

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Exercise and Physical Activity Have Multiple Benefits for People with MS