Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com

Thursday, September 10, 2020

Staying Healthy and Minimizing the Spread of COVID-19

The federal government and the CDC are proactively working to minimize the introduction and spread of this virus within the United States. More time is needed for researchers to gain a greater understanding of the specific virus (SARS-CoV-2) that causes this specific coronavirus (COVID-19), before a vaccine and treatments may be developed. Until these become available, the CDC explains that “Nonpharmaceutical Interventions” (NPIs) are actions that people and communities can take to help slow the spread of illnesses.

Also known as “community mitigation strategies,” and independent of medications and vaccines, examples of these types of actions include disinfecting surfaces, washing hands, staying home when sick, increasing the distance between people at public gatherings, canceling or postponing special events, and closing schools and/or businesses as needed. Avoiding travel to affected countries, as well as keeping a distance from anyone showing symptoms of the coronavirus, is also vital to minimizing the spread of the coronavirus.

Staying healthy and reducing one’s risk is another important factor. The CDC and MSAA recommend the following “healthy habits” for preventing the flu (and other illnesses):

Get a flu vaccine and help stop the spread of germs (if recommended by one’s doctor) *Please note that the current flu vaccine is NOT effective against COVID-19; it is only noted to otherwise help people remain in good health.

Continue taking a disease-modifying therapy (DMT) and do not make any changes to one’s treatment regimen, unless advised by one’s physician; consult a medical professional with any concerns

Take flu antivirals, if prescribed

Avoid close contact with people who are sick

Stay home when sick, but be sure to consult a medical professional

Individuals should cover their mouth and nose with a tissue when coughing or sneezing, or use the inside of their arm to avoid spreading germs

Washing hands often helps to protect people from germs; if soap and water are not available, an alcohol-based hand rub should be used

Avoid touching the eyes, nose, or mouth – an illness may be spread when a person touches something that is contaminated with germs and then touches his or her eyes, nose, or mouth

Practice other good health habits, such as cleaning and disinfecting frequently touched surfaces at home, work, or school – especially when someone is ill; get plenty of sleep, be physically active, manage stress, drink plenty of fluids, and eat nutritious food

Anyone in close contact to someone with COVID-19 and who develops symptoms of COVID-19 should immediately call his or her healthcare provider to discuss symptoms and exposure

From: The Coronavirus and MS: What You Need to Know. The Motivator – Winter/Spring 2020

 

 

Thursday, September 3, 2020

Making life easier in the kitchen

 


‘Chopped’ winner offers practical tips — and a recipe — for cooking with MS.

Chris Holland went from paralegal to restaurant chef and three-time winner of the cooking competition show “Chopped” in the span of about a decade. And he credits it all to multiple sclerosis.

Holland, who was diagnosed with MS in 2004, says his life “fell apart when I got sick.” But he put his life back together and, with encouragement from his wife, Marge, decided there was no better time to pursue his lifelong dream of becoming a chef. Today, he’s chef and part owner at DVine Bar in Rockland County, New York, where he specializes in what he likes to call “eclectic, weird fine-dining.” He concocts menu items that run the gamut from duck fat potato chips with cipollini onion crema to seared tuna and chanterelles.

chicken

Photo: iStock

“I love it there,” Holland says. “I have a great boss who really understands about my MS.”

Holland figures he applied to be on “Chopped” about 10 times before he got the call. Since then, he’s had an impressive run. He notched his third championship in November 2019, donating the $10,000 prize money to the National Multiple Sclerosis Society as a way to give back to an organization that he says has given so much to him and others. He’s also had a great response to his appearances on the show. He’s particularly happy when he hears from “the young people who were diagnosed. They say it’s so nice to see somebody who’s able to do something like I do.”

It’s not always easy. Standing for long hours in a hot kitchen, wielding knives and other cooking utensils while whipping up that cipollini crema can take its toll on somebody with MS. So, who better to offer a variety of practical tips for making life easier in the kitchen?

Here are chef Holland’s tips, along with a bonus recipe you can make while dreaming about being a “Chopped” chef yourself:

Get a Microplane grater
This grater is one of the most important tools in my kitchen and the best $15 you could ever spend. In addition to providing the delicious zest from a citrus fruit, it has other uses for the quick processing of ginger or garlic. Simply grate the ginger or garlic and avoid the tedious task of chopping these aromatics. You don’t even have to peel them.

Get some help from the supermarket
While I encourage everyone to cook your food rather than buy it, there is nothing wrong with using precooked foods for a head start. Rotisserie chickens are available in most supermarkets and are very affordable. Use them in anything that calls for cooked chicken as an ingredient and save those bones for a stock. Check the salad bar for ready-to-go ingredients that you can use in your own culinary creations.

slow cooker

Photo: iStock

Slow cookers are your friend
Slow cookers are a great way to stay out of a hot kitchen and avoid spending time on your feet. Many recipes call for 15–20 minutes of prep time, then set it and forget it. Just remember to start cooking early, as many recipes take hours to finish cooking. Slow cookers are also great for soups.

The microwave is not just for reheating coffee and for frozen dinners
This much-maligned kitchen tool does impressive work with vegetables. Hearty greens such as broccoli, green beans and carrots cook beautifully in a microwave. Just wash the vegetables (do not dry) and place them on a ceramic plate and cover with plastic wrap. Microwave on high for three minutes. Check for the desired doneness and add more time as needed. Season afterward with olive oil, lemon, and salt and pepper.

A salad doesn’t have to just be lettuce
A salad is an easy vehicle for incorporating foods beneficial to those living with MS, such as avocado, whole grains such as quinoa or chia seeds (high in fiber), fatty fish such as salmon, trout and tuna (omega 3s), walnuts (omega 3s), and lean proteins such as chicken, turkey and pork tenderloin.

 

From: NMSS

Wednesday, August 5, 2020

Inside An MS Exacerbation


By Devin Garlit · 

Exacerbation, relapse, flare-up, attack: these are all names for the same thing with regard to Multiple Sclerosis. The general definition of this event is the occurrence of new or worsening of old symptoms lasting for more than 24 hours and taking place at least 30 days after a similar event. While this can be standard occurrence for those with Multiple Sclerosis, not everyone actually understands what’s going during this period. Understanding what is happening during an exacerbation is critical for those with MS. With that in mind, I’ll do my best to help break it down as simply as I can.
What’s happening to the body during an MS exacerbation?
During one of these moments, the disease has caused your own immune system to attack your body. Specifically, your immune system begins to assault your central nervous system. Its weapon of choice? Inflammation (caused by various immune cells). This inflammation damages myelin, a fatty substance that surrounds and helps insulate our nerves. This insulating layer makes sure our nerves properly conduct the electrical signals that our brain sends to the other parts of our body (think of it as the plastic covering on an electrical wire). When this layer is damaged, those signals don’t move fast enough or at all, which is where we start to see our symptoms. Can’t lift your leg fast enough or at all? The myelin around a nerve between your brain and leg has been compromised and the signal isn’t traveling as efficiently as it should be. Not only does our immune system damage the myelin, but it also damages the cells needed to regrow it.
When the immune system attacks
These moments that we call exacerbations (or whichever term you like) are when the immune system is making its attack. It’s when the immune system has created a lot of inflammation in your central nervous system, and it’s damaging that myelin layer. Not only does this inflammation damage that protective coating, but it also has an effect on those signals that are traveling through that part of the central nervous system. We use steroids to fight exacerbations as they help to reduce this inflammation.
When a relapse is over: the aftermath
When an exacerbation is over, these damaged areas of myelin develop some scar tissue (that’s where we get the term sclerosis in multiple sclerosis, we are left with multiple scars; these scars are also referred to as plaques or lesions). Once all that inflammation is gone or significantly reduced, some of that myelin can regrow, but it never grows back completely or strong enough due to the scarring and because the cells needed to facilitate regrowth have been damaged. This regrowth, coupled with the reduction in inflammation, is why people can seem to bounce back after an exacerbation. They may even seem like they are completely well again. That’s why people often use the term “relapse,” because they seem to improve or go back to the way they were. This is a pattern that is extremely common in people diagnosed with the Relapsing-Remitting form of the disease. However, the more exacerbations you have, the more your ability to bounce back becomes hindered.
Accumulating damage over time
The more scars you have and the more cells that help regrow myelin are damaged, the less you are able to recover. In the past, maybe a damaged nerve could still get the brain’s signal where it needed to go, even if not the most efficiently (unless an outside influence temporarily triggered an issue). As more damage occurs over time though, the ability of that nerve to do its job, no matter the situation, becomes compromised. Basically, that’s how people with MS can worsen over time. That’s why doctors try to not only shorten the length of exacerbations through steroids, but to minimize the overall number of them with disease-modifying drugs.

Tuesday, July 14, 2020

Survey on Complementary/Alternative Medicine Points to Increasing Use by People with MS


The use of complementary and alternative therapies – including vitamin/mineral supplements, mind-body therapies, diet, and exercise – is widespread in MS (81%), according to researchers from Oregon Health & Science University who report on a survey of 1,014 people with MS. It is also on the rise; the team compared these survey results to those of a similar survey conducted in 2001, and found that use of all therapies increased significantly. Respondents to the current survey were nine times more likely to speak with their neurologist about use of these therapies than in 2001.

Many complementary/alternative therapies are considered to be outside the realm of conventional medicine, although others, including vitamin D, exercise, acupuncture, and cooling strategies, for example, have established their role in comprehensive care through scientific study and clinical trials. The survey results highlight the need for  more research to determine the safety and effectiveness of specific complementary and alternative therapies, conclude the study authors. This study was partly funded by the National MS Society. Lead author Elizabeth Silbermann, MD, is funded by the Society’s Sylvia Lawry Fellowship, which trains individuals to conduct clinical research in MS.

Read more on the OHSU website

Read a scientific summary of the paper in MS and Related Disorders

Read more about complementary therapies and MS, including questions to ask when considering a complementary/alternative therapy

Saturday, June 13, 2020

What Type of MS Do You Have? Experts Clarify How to Describe MS to Improve Care and Clinical Trials


An international committee of MS experts has published a statement that clarifies how to describe the different courses of multiple sclerosis and disease activity. The statement was prompted by inconsistencies in the way MS descriptors are used by the MS community. These clarifications can improve care and access to treatments, and refine the selection of clinical trial participants so that trial outcomes can be better applied to clinical care.

The statement was an effort by the International Advisory Committee on Clinical Trials in Multiple Sclerosis, which is jointly supported by the US National MS Society and the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The Committee provides perspective and guidance in areas of interest to planning and implementing clinical trials for new agents for the treatment of MS.

“With this published statement, we’re encouraging the healthcare and regulatory community to use the terms as described for the different subtypes of MS and for describing disease activity,” noted Fred Lublin, MD (Icahn School of Medicine at Mount Sinai), who is senior author of the statement and two previous papers defining MS subtypes that were published in 1996 and 2013 under the auspices of the committee. “It’s critical not just for improving patient care, but also for selecting participants for clinical trials, so you are comparing apples to apples.”

Inconsistent use of the terms: The 2013 paper defined four categories of MS based on current clinical course: clinically isolated syndrome (an initial episode of neurological symptoms), relapsing-remitting MS, secondary progressive MS, and primary progressive MS. The paper also recommended adding terms to describe an individual’s current disease state, such as “active” (shown by relapse or changes on MRI) and “progression” (shown by worsening of disability independent of relapse activity). While the time period for the activity was not specified, it was recommended that an assessment be performed at least annually.

Since the 2013 paper was published, there has been confusion in the use of the terms describing a person’s current disease state and the terms have been used without reference to a timeframe. For example, in the prescription indications for recent MS therapy approvals, neither the European Medicines Agency nor the U.S. Food and Drug Administration specified a timeframe for determining disease activity. Moreover, the agencies defined activity differently; the European Medicines Agency defined “activity” as either clinical relapse or MRI-detected inflammation, whereas the U.S. Food and Drug Administration defined “activity” only in terms of relapses.

Clarifying definitions: The recently published statement reiterates the definition of “activity” as clinical relapses or imaging features of inflammatory activity, evaluated annually or over another specified interval. The definition of “progression” is reiterated as clinical evidence of disability worsening, independent of relapses, in individuals in a progressive phase, evaluated annually or over another specified interval. Also, the more general term “worsening” refers to any increase in impairment or disability as the result of residual deficits caused by relapses, or increasing disability during progressive phases of MS.

Future work: “As part of its ongoing activities, the committee plans to continue to reevaluate and refine course descriptors, especially when new evidence-based methods enable pathological distinctions between MS phenotypes, said Professor Alan Thompson, Chair of the International Advisory Committee on Clinical Trials in MS and Dean of University College London’s Faculty of Brain Sciences. “This would vastly improve prognosis, treatment choices, and the development of more selective therapies.”

Read the recently published open access statement, “The 2013 clinical course descriptors for multiple sclerosis: A clarification” by Fred D. Lublin, Timothy Coetzee, Jeffrey A. Cohen, Ruth Ann Marrie, Alan J. Thompson. Published online in Neurology on May 29, 2020.

Read more about types of MS