How to Handle a Bad Day when Chronically Ill

My mom was having a bad day when we were on vacation. It is how we handled that day which helped us both to have a good day on the following day.

What did we do, or not do, that made a difference?

• We didn’t try to “snap out of it” or push through the tiredness and overall sick feeling. We honored the icky feelings and changed our expectations of the day accordingly.
• We didn’t get upset because I had just bought an uneaten lunch (which did get finished eventually.)
• We made sure that my mother had what she wanted and needed within reach to make her feel more comfortable.
• We didn’t say, “woe is me,” or made a big deal out of the bad day. Instead, my mom allowed her body what it needed—another five hours of sleep, air conditioning, comfort—and I gave her time and space to do so.

By being patient and kind, my mother says that I was able to help her slow down the roller coaster and bring it to a gentle stop. I went out shopping alone and prepared a simple meal for supper that evening. With the extra rest, she and I both were in better shape to continue with our planned vacation activities on Tuesday.

When you care for someone who is having a bad day, know that it’s okay. Give them space, emotionally and physically, to have that bad day. Be flexible, patient, and kind. Honoring the bad days will allow the good days to blossom.

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Handling a Bad Day as a Caregiver

Nystagmus and Multiple Sclerosis

Nystagmus is a condition that causes the eyes to make quick, repetitive, uncontrolled movements - from side to side, up and down, or in a circular pattern - making the eyes appear to bounce around. The jerky motion may be triggered by optical stimuli or physical motion, or may occur at rest. Nystagmus can be mild, occurring only when a person looks to the side, or it may be severe enough to impair vision. Nystagmus often makes it difficult to focus steadily on a fixed object.

Nystagmus can be an inherited condition, showing up in early childhood, or it can develop later in life due to an accident or illness. Nystagmus is often a symptom of an underlying medical problem, such as stroke, multiple sclerosis, or head trauma. Other causes of nystagmus include severe nearsightedness, albinism, inflammation of the inner ear, central nervous system diseases, and medication side-effects. Sometimes the cause may be unknown.

In persons with multiple sclerosis, lesions in the brainstem and cerebellum may interfere with the nerve signals that affect motion of the eyes causing nystagmus. According to the MS Foundation, approximately 35 percent of individuals with multiple sclerosis may develop nystagmus. Abnormal gaze-holding mechanisms, vestibular imbalance, and impaired fixation are the most common causes of nystagmus in multiple sclerosis.

I’ve been one of those 35 percent as I developed mild nystagmus about seven years ago. Mine is triggered by visual stimuli such as looking up and down repeatedly between the piano keyboard and music while I’m teaching. The nystagmus which develops can be somewhat disorienting.

Treatment for nystagmus depends upon the type of abnormal eye movements involved.

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MS Signs vs Symptoms: What is Nystagmus?

Puberty Affects Pediatric MS

Multiple sclerosis in children is rare, but not unheard of. An accurate diagnosis can be made difficult due to differences in common first symptoms when compared to typical adult onset cases of MS. Before puberty an even number of males and females developed MS (ratio 1:1). In adults, MS affects more women than men at a ratio of about 3:1.

In two different studies examining MS in children, researchers identified the types of symptoms which were more common as first major attacks in children in different age groups and the association between menarche (first menstrual cycle in puberty) with disease course in female pediatric patients.

MS onset during childhood

To help facilitate early diagnosis in pediatric MS, a team of German researchers at the Center for Multiple Sclerosis in Childhood and Adolescence at the University Medical Center in Göttingen set out to identify a “typical” pattern of symptoms in patients developing MS before puberty.

In a retrospective study, researchers compared disease onset of 47 pre-pubertal patients (<11 41="" 4="" an="" and="" course="" disease="" duration="" had="" in="" included="" initial="" minimum="" nbsp="" of="" old="" p="" patients="" post-pubertal="" relapsing-remitting="" study="" the="" with="" years.="" years="">

The patients who developed MS before puberty were more likely to have a severe, polysymptomatic (more than one symptom) first attack with motor and brainstem involvement, sphincter dysfunction, cognitive disturbances, and milder residual neurological symptoms after the first episode. Patients with pre-pubertal MS maintained these types of symptoms over the first two years post-diagnosis and presentation did not differ significantly in boys and girls before puberty.¹

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Pediatric MS Affected by Puberty

Keeping Up with Weight Loss and Exercise Goals with MS

Staying motivated while making lifestyle changes can be challenging. How many times have you started an exercise or diet program just to fizzle out in enthusiasm after a month or two?

In February I shared with you how wearable technology, such as a FitBit device, can help to provide motivation to make lifestyle changes. I began wearing a FitBit last summer, but it wasn’t until November that I began making a concerted effort to exercise more, taking advantage of the Airdyne exercise bike in my basement.

Throughout December and January, I attended twice weekly physical therapy sessions to work on strength and range of motion with the goals to improve physical function and reduce the pain I was experiencing from knee osteoarthritis.

When I reported my progress in February, I had lost 19.5 pounds. Here it is 28 weeks from when I started keeping track of food consumption and exercise, and I have now lost 34 pounds. Whoohoo!

Update: It has now been 32 weeks and I've dropped 40 pounds!

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Weight Loss and Exercise: Staying on Track with MS

MS is Different in Older Adults

The treatment of older adults with MS can be challenging with the lack of evidence-based guidelines specific to this growing cohort of patients. For years, older people have been underrepresented in pharmaceutical clinical trials. The average age of participants in early pivotal trials for IFN𝛽 drugs was 35, while those over the age of 50 or 55 were excluded. More recent studies have increased upper age limits to 60 or 65 years old. Also, older people tend to have more comorbidities, a common reason for exclusion from many clinical trials.

Authors of the Canadian study emphasize that further studies are needed to develop evidence-based guidelines for this special population. Information regarding the impact of DMTs in older MS patients is needed for a number of reasons:

• Older adults with MS are typically treated using therapeutic guidelines originally established for younger adults, without direct evidence to support this practice.
• Aging affects the pharmacodynamics and pharmacokinetics of drugs, as well as the immune system, thus immunomodulatory therapies might have a different effect in older MS patients.
• Follow-up time in clinical trials is typically 2-3 years, too short to capture the longer term progression profile of patients. 
• Clinical trial settings differ from real-world settings, especially in respect to patient characteristics, such as comorbidities and the motivation or ability to adhere to medications.
• As the prevalence of older people living with MS continues to increase with an aging population, there is an important need to better understand the characteristics of older patients including their potential response to drug treatments for MS.

While researchers gather evidence that shows particular therapies are less effective in older MS patients, it is important to explore more effective options.

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Multiple Sclerosis in Older Adults

Comorbidity and Patient-Centered Research

The five most prevalent disorders occurring simultaneously with multiple sclerosis were depression, anxiety, high blood pressure, high cholesterol, and chronic lung disease. The most prevalent autoimmune diseases occurring with MS were thyroid disease and psoriasis. The types of cancer that occurred most often in people with MS were cervical, breast, and digestive system cancers.

Some disorders were found more often than expected based on previous research, including heart disease, congestive heart failure, stroke, arthritis, inflammatory bowel disease, irritable bowel syndrome, seizure disorders, bipolar disorder, sleep disorders, and alcohol abuse.

PCORI, Comorbidity, Research, and YOU!

A number of writers here at MultipleSclerosis.net, including myself, have encouraged you to join iConquerMS™ which is a Patient-Powered Research Network (PPRN) initially funded by the Patient-Centered Outcomes Research Institute (PCORI).

I hope that you have taken the time to register and begin participating in this unique patient-driven research initiative at iConquerMS.org. Everybody with MS, even those who have experienced a case of Clinically Isolated Syndrome or Radiologically Isolated Syndrome are welcome to contribute. Also, you may participate at iConquerMS™ regardless of comorbidities, treatment choices, or other factors. A complex and diverse patient population is desirable.

Expand Your Participation in Patient-Driven Research

There are currently 18 PPRNs established as part of PCORnet. The following list includes just some of the diseases which have a dedicated research network:


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Look Beyond MS to Advance Patient-Centered Research

Zinc Helps to Reduce MS Depression, A New Study Shows

Both zinc deficiency and excess are known to affect the immune system. A study using oral zinc aspartate to treat EAE (experimental autoimmune encephalomyelitis, a MS-like disease in mice) resulted in reduced clinical signs during the relapsing-remitting from the disease.

In a recent double-blind, placebo-controlled trial, researchers examined the effect of zinc on depression and neurological signs in people diagnosed with MS. Forty-three people with MS and major depressive disorder were randomly assigned to one of two groups: the placebo group (n=22) and the intervention group (n=21) which received zinc sulfate (220mg containing 50mg zinc element) for 12 weeks.

Results of the study indicated that depression scores were reduced in participants who received the zinc supplement compared to those in the placebo group. However, there was no difference between the groups during neurological examinations that evaluated abnormal ocular (eye) movement, muscle strength, and gait (walking ability).&nbsp

Researchers conclude that zinc supplementation is an appropriate choice to manage depression in patients with MS.

Dietary sources of zinc

According to the National Institutes of Health, a wide variety of foods contain zinc, but none more than oysters. Most Americans get zinc from red meat and poultry. Other good food sources include beans, nuts, certain types of seafood (such as crab and lobster), whole grains, fortified breakfast cereals, and dairy products.

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Can Zinc Help Reduce MS Depression?

Masks of Invincibility

In my normal day-to-day life, I am not confronted with the dilemma of “putting on a brave face” for those around me. My loved ones appreciate the wide variety of experiences and challenges which living with MS and RA may present. But for the past couple of weeks, I have been confronted with the public-face vs private-face contradiction which so many people living with chronic disease encounter.

As a private music teacher, April is often the time I push a little harder to help fine-tune practice and performance techniques of students while encouraging confidence as they prepare for contest performances and our annual recital. It’s a stressful, but exciting time, for both teacher and student. However, trust me when I say that getting ready for the big recital is probably much more stressful on the teacher than the students.

April is also the month during which our state region hosts the annual Solo and Ensemble Festivals at which I accompany my own private students, as well as several other young performers who are required to have an accompanist. This has become a significant source of income which balances the fact that most of my private students do not continue lessons during the summer. Too often it’s feast-or-famine for a freelance musician.

This year I have been working with 21 students in preparation for 25 performances, totaling more than 35 distinct movements of music, in addition to the digital recording of two pieces for one student’s “introductory” video for her intended private teacher at college next year.

Some of the selections of music are not too challenging, but others have been so difficult that I’ve had to put in several additional hours of practice time outside of rehearsal time with each soloist. One piece in particular seems nearly impossible to perform as composed, and indeed is within our short timeframe, even with an estimated four hours of additional personal practice time put in so far for that piece alone.

But yet, it is my job to do my best, and to do so with a cheerful and encouraging demeanor. I can’t simply say, “that crazy tempo you want to play, which is faster than any of the professional recordings I’ve studied in preparation for our time together, simply ain’t gonna happen.”


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You're Doing Great! And Other Masks We Wear