Relapse-Free No More

My journey with MS has had some significant ups and downs. Some of the downs include blindness, complete loss of use of two fingers on my left hand (which is devastating to a classically-trained pianist and teacher), weak arms and legs, all over numbness, impaired balance, fatigue, spasticity, anxiety, and depression.

I’ve been enjoying more of the ups in recent years; really since I switched medication to rituximab (a monoclonal antibody therapy used for RA, lymphoma, and other autoimmune diseases, which should be released in a new form and approved for MS sometime in the next year as ocrelizumab).

After switching medications from Copaxone to Rituxan I began to experience actual improvement in symptoms over time. Functions got better and relapses more infrequent. In fact, I hadn’t had a serious relapse that prompted me to call the neurology office in between routine visits in 50 months. Minor bumps, sure, but nothing big.

FIFTY MONTHS!! How cool is that?

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Damn, My Long Relapse-Free Streak Has Ended

How To Reduce Falling With MS

One of the most fearsome consequences of multiple sclerosis is immobility. People with MS may grow increasingly worried about walking unsteadily; needing to use a cane, arm crutches, or wheelchair; or a reduced ability to be safe while moving from one place to another. Living with MS also means an increased risk of falling, which is more likely to happen at home, during the day, or in the midst of normal activities like turning, walking, climbing stairs, or while transitioning between body postures (Gunn et al, 2014).

Early in my time of living with MS, I remember a day when our family went out to eat at an unfamiliar restaurant. Lunch was excellent and we had leftovers to take home. As we left the restaurant and made our way back to the car, I suddenly found myself face-down in the main entrance to the parking lot, with our leftovers a couple of feet away on the ground. I had stepped off the curb and “tried to walk on air, apparently,” I told my neurologist. I had not become fully aware before this incident that I couldn’t feel my feet, nor the ground beneath them. The lack of sensation significantly increased my risk of falling.

Factors contributing to the risk of falling

Physical symptoms of MS -- such as weakness, spasticity, loss of balance, dizziness, sensory deficits, and tremors -- can contribute to falls. Fatigue, heat intolerance, vision problems, and cognitive changes can increase fall risk, as well. Behavioral risk factors include deconditioning and inactivity. It is important to stay physically active so that you can remain physically active. (That sounds obvious, I know.) Finally, environmental conditions can contribute to falls, including poor lighting, uneven or unsteady surfaces, clutter and obstacles, and even your choice of clothing. And in a bitter kind of irony, both overconfidence and the fear of falling increase the risk of falls.


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Reducing Falls in MS

Benefits of Walking Downhill with MS

It’s common knowledge that walking is good for your health. Walking on flat ground, walking in water, walking/marching in place, walking up and down the stairs. If you can do it, it’s all good. But not all forms of walking are created equal or offer the same benefits. Using a treadmill to walk on a slope just may help you to improve muscle performance, functional activity, and balance control if you live with multiple sclerosis (MS).

MS is a disease of the central nervous system that can impair mobility when symptoms affect sensory and motor function. Weakness, numbness, fatigue, balance problems are all symptoms of MS that interfere with mobility, stability, and quality of life. Neurological rehabilitation, exercise therapy, strength training, and conditioning are important interventions to help people with MS stay strong and active.

What is the effect of uphill or downhill walking on MS?

To investigate the specific effects of uphill and downhill walking exercise on mobility, functional activities, and muscle strength in MS patients, researchers at the Neuromuscular Rehabilitation Research Center at Semnan University of Medical Sciences conducted a study in 34 people with MS (aged 18-50, diagnosed with RRMS, have some difficulty walking, but able to walk 10 meters in less than 10 minutes with or without a cane).

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Walking Downhill Helps to Improve MS Symptoms

Managing Your MS in Hot Weather

As I pass by the hall thermostat, I check to see how warm or cold it may be inside and outside the house. During the summer months, if the outside temperature approaches 90°F, I feel a twinge of sadness. Why? Hot weather, humidity, multiple sclerosis, and I do not play well together.

Impaired body temperature regulation

People with MS may have difficulty regulating body temperature due to impaired neural control of autonomic and endocrine (hormonal) functions. This means that the part of the brain that senses core body temperature and tries to keep it in balance at about 98.6°F doesn’t work as effectively as it should. Some people with MS may even have a naturally low core body temperature which in turn exacerbates their sensitivity to heat. At a recent medical visit, my body temperature clocked in at 95.9°F which means that a “normal” body temperature would represent a fever for me.

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Tips on How to Manage Your MS in Hot Weather

MS Risk and Coffee

In recent years, I’ve become addicted to my daily mug of coffee. I love the smell, the warmth, and the extra boost of sugar (yes, I really do use real sugar in my coffee). Coffee not only helps to perk up my mind, it also has a mild effect on regular bowel movements. Basically, coffee is an important part of each day’s routine and without it, I’d feel like a zombie most days.

I wasn’t always a coffee drinker. I originally started drinking coffee in an attempt to combat MS fatigue. But recent research suggests that if I had been an avid coffee drinker prior to MS, my risk of developing MS may have been reduced by as much as 30 percent (Hedström et al, 2016). That’s a significant reduction!

Why coffee?

Coffee contains many biologically active compounds that provide a number of health benefits. Studies have shown that caffeine intake has been associated with lower risk of cardiovascular disease, stroke, and type 2 diabetes. Caffeine may also protect against blood-brain barrier leakage according to research conducted in animal models of Alzheimer’s disease. Caffeine consumption may also reduce neuroinflammation and demyelination in animal models of MS.

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Could Drinking Coffee Reduce MS Risk?

Respiratory Dysfunction in Advanced Multiple Sclerosis

What respiratory problems are common in advanced MS?
A common symptom of MS is muscle weakness which may affect the muscles that control breathing. Muscle weakness can make breathing difficult and shallow breathing may contribute to pneumonia. Muscle weakness can also affect swallowing which may lead to aspiration pneumonia. It’s important to remember that patients with MS may have difficulty fighting infection caused by bacteria or viruses.

What are early signs of respiratory muscle weakness?
Symptoms may be subtle such as shortness of breath or a gradual increase in coughing when the person with advanced MS eats or drinks fluids. Increased coughing or total obstruction of the airway may occur when eating solids. Medications that cause drowsiness may affect a person’s ability to control swallowing as well. Or symptoms might emerge when the muscles that control breathing are under increased pressure, such as when you may be standing in chest-high water.

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Living with Advanced MS: Respiratory Care