quality of life

Living with secondary progressive multiple sclerosis is a lesson in discovery. I strive to manage life with MS one day at a time. My disease touches all aspects of my life. One of the elements it affects is intimacy: closeness, affinity, warmth, trust, and mutual affection. Intimacy is friendliness,…

  Several summers ago I had the misfortune of experiencing the simultaneous agony of kidney stones and gallstones. The level of pain was greater than I’d had with childbirth. It brought me to my knees and took two hospitals, one misdiagnosis, and two surgeries to get…

There is a need for better diagnosis and treatment management of comorbidities — simultaneously occurring disorders — in people with multiple sclerosis (MS), as shown by the impact these additional health issues have on patients’ health-related quality of life, according to a new report. The data was presented by Lara…

Vitamins B12 and B9 (folic acid) supplements can lower levels of homocysteine (a common amino acid), improve anemia status, and boost self-reported physical health in patients with multiple sclerosis, according to new research. The study suggests a potential role for these two vitamins in improving the quality of life of MS patients. Despite treatment, MS patients often experience symptoms that interfere with their daily lives. Many patients have turned to dietary supplements with the hope they would reduce the severity of their symptoms. There is substantial literature suggesting the benefits of various supplements for MS, including vitamin B12 and folic acid. Homocysteine, of which high levels are associated with heart disease and detrimental effects in the nervous system, can be more prevalent in MS patients compared to healthy individuals. That suggests homocysteine is "one of the causative factors in the pathogenesis [development] of MS," researchers wrote. Lack of vitamin B12 — naturally found in meat, fish, poultry, eggs, and dairy products — can lead to a disruption in myelination, the process of forming a protective myelin coat around nerve cells. The loss of myelin is a hallmark of MS. A lack of folic acid, together with too little vitamin B12, has been linked to neurological symptom onset in MS patients. Meanwhile, vitamin B12 and folic acid supplements have shown promising results among these patients. In addition, MS patients are known to have an increased risk for the development of megaloblastic anemia — a condition in which the bone marrow produces unusually large, immature red blood cells referred to as megaloblasts. The most common causes of megaloblastic anemia are a deficiency of either vitamin B12 or folic acid. Based on these observations, researchers from Urmia University of Medical Sciences and Kermanshah University of Medical Sciences, in Iran, studied the effects of vitamin B12 and folic acid supplements in  relapsing-remitting multiple sclerosis (RRMS) patients. The team looked specifically at serum homocysteine levels, anemia status, and quality of life. This double-blinded clinical trial (IRCT2015100313678N7) enrolled 50 RRMS patients (age 20-40 years), who were divided into two groups: the vitamin group, which received three doses of 1 mg vitamin B12 injection (spaced a month apart) plus 5 mg folic acid tablets daily; and the placebo group, which received neutral saline injections. All participants completed two quality-of-life questionnaires, one geared toward physical health and the other toward mental health, at the start and end of the study. Blood samples were collected from all participants, and blood pressure readings were taken. Results showed a drop in average homocysteine blood serum levels in the vitamin group, which may be indicative of an improvement in nervous system health. Researchers also observed a decrease in mean corpuscular volume (MCV) in the vitamin group, which is indicative of improved anemia status. At the end of the study the vitamin group showed improvements in both physical and mental fields in the quality-of-life questionnaires. However, RRMS patients in the control group (without vitamin supplements) also had an increase in the quality-of-life questionnaire for mental health, obscuring any conclusions on the effect of vitamin supplements in MS patients’ mental health. “Results of the present study have shown that homocysteine levels, anemia status, and eventually the quality of life of patients with MS can be significantly improved by administration of 1 mg of vitamin B12 monthly and adding rich-food sources of folic acid on their diet,” the researchers wrote. The team nonetheless emphasizes that "further studies in the field of MS dietary patterns must be conducted."

Depression and psychological distress symptoms can have a huge effect on the way multiple sclerosis (MS) patients view their well-being, a new study has found. Since depression and psychological distress symptoms can be targeted therapeutically, the study proposes focusing on mental health disorders in MS patients to considerably…

Sometimes I feel that some in the multiple sclerosis (MS) community do not show kindness to each other. Perhaps they can’t relate to others’ MS realities because their symptoms are dissimilar or they have a different disease type. I have witnessed interactions between people with MS in which one…

Take a minute … and relax. It’s been a fraught few weeks of numerous solo hospital visits, as my wife was first dealing with a dying father and then helping to organize his funeral, estate, and her own turbulent emotions. Her mum had died only four months ago.

I like to keep my life as normal as possible. This can be difficult given the physical challenges multiple sclerosis and chronic pain pose. Nevertheless, I try. Saturday was one of those days. I mistakenly assumed I could tackle Costco — the Goliath to my David. Hence, I must…

“I’m alive,” said Shadow. “I’m not dead. Remember?” “You’re not dead,” Laura said. “But I’m not sure you’re alive, either. Not really.” This snippet of a longer conversation in Neil Gaiman’s “American Gods” is a strange and wonderful moment in the book — and not only because Laura…

I’d be lying if I said I enjoyed the endless hours of Barney I was forced to endure when I babysat kids in the 1990s, but “The Clean Up Song” has stuck with me. Why? For one thing, it worked like a charm to get the house…

Not everyone is going to get it. And by “it” I mean our disease and the way it affects our lives. Few understand our limitations or the ramifications of pushing past them. Many people are perplexed when, having witnessed our smiles and strength, they see us suffering. Others…

An international survey of caregivers and adults with neurological diseases, including multiple sclerosis (MS), revealed that spasticity is a hidden burden, having a negative effect on the ability to perform everyday tasks, and that relieving its symptoms significantly improves patients’ quality of life. The survey was presented by…

Mindfulness protects against depression, anxiety, fatigue, and sleep problems in patients with multiple sclerosis (MS), improving their quality of life and overall well-being, a study finds. The study, “Longitudinal associations between mindfulness and well-being in people with multiple sclerosis,” was published in the International Journal…

Welcome to the new year! I am grateful for the opportunity to open my eyes and still have the gift of life. Many did not make it into 2019. Those who have transitioned are remembered with love and respect. Last year, I made a happiness jar. The intent…

Not long ago, I dreamed I was running. Again. It was the first time I’d had the dream in a while. It was always the same, “Been Caught Stealing,” or something like it roaring in my headphones, me in stride and rhythm with the…

Use of Hospital Palliative Care by MS Patients in US Rose 30-fold Between 2005-14, Study Finds Palliative care emphasizes prevention and relief of a patient’s suffering. Its goal is to improve the quality of life of that patient and his or her family. It’s usually thought of…

Having lived with multiple sclerosis (MS) for over three decades, I have lots of stories to tell about my experience with the disease. Tales about dating, marriage, pregnancy, childbirth, motherhood, relationships, career, and so on. I’ve had MS for so long that sometimes it’s hard…

Asking for assistance is not my favorite thing to do. But frequently, I do ask. The extra help aids in conserving my energy. Some people may feel my energy conservation requests resemble a lazy scam of sorts but, honestly, it’s not. When I ask for a drink of water or…

Some days are hard, while others are still harder. Then there are days that bring you to your knees. I am kneeling. Pain ricochets through my body like a pinball machine on tilt. Flashing lights dance as if to announce the imminent. “Danger, Will Robinson!” I hit…

Dental hygiene is not a high priority for some people. Brushing, flossing, dental checkups, and cleanings are often overlooked or avoided. For those with a disability, keeping up with a dental care routine can be incredibly challenging. While the energy expended to ensure proper dental care can increase fatigue,…

A person’s social network can have an effect on their functional disability. This is what researchers discovered when they applied an online assessment tool they developed to people at risk of developing multiple sclerosis (MS). The tool, developed by researchers from Brigham and Women’s Hospital, Broad Institute in Boston,…

A recent study found that elder individuals with multiple sclerosis (MS) experience significantly less severe depressive symptoms and better quality of life than their younger counterparts. The research, “Subjective well-being differs with age in multiple sclerosis: A brief report,” was published in the journal Rehabilitation Psychology.

Having just written about uninvited commentary, I found this gem too awesome not to share. I went to the grocery store in my requisite San Francisco Giants cap and Ray-Ban sunglasses. Upon leaving, I chatted with the checker about the usual inane topics. Knowing my health status, she asked…

Parents of children with pediatric-onset multiple sclerosis (MS) report a lower overall quality of life than those whose kids have a condition marked by demyelination but is not a chronic disease, a study reports. The lifelong nature of MS makes all the difference, it said. MonoADS, like MS, is caused by…

Sexual problems are a frequent but unreported symptom of multiple sclerosis (MS) that affects other symptoms patients experience with this disease, including depression, a study reports. The study, “Factors associated with sexual dysfunction in individuals with multiple sclerosis,” published in the International Journal of MS Care. Sexual dysfunction is…

Cigarette smoking worsens shortness of breath and fatigue, increases the rate of hospital admissions, and fosters a sedentary lifestyle in patients with multiple sclerosis (MS), according to a new study. The research, “Effects of cigarette smoking on respiratory problems and functional levels in multiple sclerosis patients,”…

Poor sleep quality is very common among patients with relapsing-remitting multiple sclerosis (RRMS) or clinically isolated syndrome (CIS), and is associated with a lower quality of life, and greater fatigue, depression and anxiety, according to a real-world study in patients treated with Betaferon (interferon beta-1b). The study, “…

I knew I had MS nine years ago when I went back to see my neurologist. I’d had the lumbar puncture to prove it definitively, and I displayed all the requisite symptoms. The only question I had was, “Will this lead to me being in a wheelchair?” The…

Aug. 1 was a busy day around our house. Backpacks needed to be loaded up, breakfasts consumed, pictures taken, and shoes tied tightly before the bus arrived. Yes, it was the first day of school. (I could talk about how ridiculous it is for kids to be going back to…

I can describe myself with a myriad of words: kind, funny, smart, quirky, and stubborn, to name a few. So many words are descriptive of my persona; I almost felt safety among them. Almost. I have always preferred paved road to dirt; my place was to shine the already…