Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com
Showing posts with label MS Society. Show all posts
Showing posts with label MS Society. Show all posts

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

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, May 2, 2020

More on COVID-19 and MS


Coronavirus Risk for People Living with Multiple Sclerosis (MS)
MS itself does not increase the risk of getting COVID-19. However, certain factors associated with your MS may increase your risk for complications:
  • Chronic medical conditions, such as lung disease, heart disease, diabetes, cancer, smoking and asthma
  • Significantly restricted mobility, such as needing to spend most of your day seated or in bed
  • Age 65 or older
  • Possibly taking certain disease modifying therapies that deplete immune system cells
  • Severe obesity or BMI higher than 40
  • Living in a long-term care facility
Sometimes, the body’s response to infections, including COVID-19, may cause a temporary worsening of MS symptoms. Typically, these symptoms settle down once the infection clears up. If you are experiencing new MS symptoms or have any concerns about any of your MS symptoms, please contact your MS healthcare provider.
 
Protecting Yourself from Coronavirus
The Centers for Disease Control and Prevention (CDC) provides recommendations on how to prevent the spread of COVID-19 and what to do if you show symptoms.   
Working and Coronavirus (COVID-19)
MS Healthcare Providers
Healthcare providers who treat people living with MS can find additional information in our Professional Resource Center.
Healthcare Workers Who Have MS
  • There is no increased risk of you getting COVID-19 because you have MS.
  • If you are concerned about your risk of getting COVID-19 because of the DMT you take, please contact your MS provider for advice.
  • There are no special PPE instructions for people with MS. You should follow the same precautions as other healthcare workers. If you are concerned about your risk due to your DMT, please contact your MS provider for advice.
Employee Rights
There are many protections that could be available to you if your employer is not being flexible with work from home options or workplace accommodations. Visit our employment resources page to learn more or contact an MS Navigator to discuss your individual rights and options.
Children with MS
There is no specific advice for children with MS; they should follow the advice above for all people with MS. The CDC has specific recommendations for children and COVID-19.
Pregnancy
At this time there is no specific advice for women with MS who are pregnant. There is general information on COVID-19 and pregnancy on the CDC website.
Additional Resources

Friday, February 28, 2020

What You Need to Know about Coronavirus


February 27, 2020
What is the coronavirus 2019 (COVID-19)?
Coronavirus 2019 (COVID-19) is a respiratory illness  that can spread from person to person. At this time, it’s unclear how easily the virus that causes COVID-19 is spreading between people.

What are the symptoms of COVID-19?
Most people who contract COVID-19 will have mild symptoms, but some people will have more severe symptoms. Symptoms can include:
• fever
• cough
• difficulty breathing (shortness of breath)

How can I help protect myself?
There are simple everyday preventive actions to help prevent the spread of respiratory viruses.
These include
• Wash your hands often with soap and water for at least 20 seconds. Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available.
• Avoid close contact (at least 3 feet away) with people who are sick.
• Avoid touching your eyes, nose, and mouth with unwashed hands.
• Cover your cough or sneeze with a flexed elbow or tissue, then throw the tissue in the trash.
• Clean and disinfect frequently touched objects and surfaces.

What does COVID-19 mean for people living with MS?
Many disease modifying therapies (DMTs) for MS work by modifying or suppressing the immune system. People with MS who are treated with these therapies can face an increased risk of infections. If you are taking a DMT and believe you have been exposed to COVID-19 or are confirmed to have this infection, please contact your neurologist or primary care healthcare provider.

Other resources

Sunday, June 30, 2019

Stem cells hold promise for MS




There is exciting and innovative research and progress occurring related to the potential of many types of stem cells for slowing MS disease activity and for repairing damage to the nervous system. In light of the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, we believe that the potential of all types of cell therapies must be explored.
Stem cell therapy is any treatment that uses or targets stem cells, which are the types of cells that differentiate into many different specialized cells in our bodies. Stem cells are found in both embryos and adults.
Many types of stem cells are being explored for their potential benefits for treating multiple sclerosis. Only when the results of these and subsequent clinical trials are available will it be possible to determine what the optimal cells, delivery methods, safety and actual effectiveness of these current experimental therapies might be for people with MS.

Although cell based therapy has generated a great deal of interest and holds promise, the field is in its infancy and much more research is needed before cell based therapies become a MS treatment option. 
Different Types of Stem Cells
  • HSCs (haematopoietic stem cells) – adult stem cells that are found in bone marrow and blood. HSCs are capable of producing all of the cells that make up the blood and the immune system.
  • MSCs (mesenchymal stem cells) – adult stem cells found in several places in the body, including the bone marrow, skin and fat tissue. They produce cells which help other stem cells function properly.
  • NSCs (neural stem cells) – specialized stem cells responsible for repairing nerve-insulating myelin in the brain. These can be derived from other types of stem cells such as mesenchymal cells.
  • hESCs (human embryonic stem cells) – stem cells derived from donated embryos. They can naturally produce every type of cell in the body. One concern about their potential therapeutic use is that they have been found to cause tumors.
  • iPSCs (induced pluripotent stem cells) are engineered from adult cells to produce many types of cells. One concern about their potential therapeutic use is that they have been found to cause tumors.
 National Multiple Sclerosis Society. www.NMSS.org

Wednesday, June 6, 2018

New MS Research

Research on immune activity in MS

Understanding and stopping MS in its tracks requires a better understanding of the role that the immune system plays in this disease. This system is involved both in the inflammatory attacks on myelin and, very possibly, in the injury to axons (the wire-like nerve fibers) that contributes to longer-term disability. Research on the immune system includes studies on:
  • Understanding components of the immune system such as T cells, B cells, and antibodies
  • Identifying new targets for therapeutic intervention while leaving the rest of the immune system capable of fighting infections
  • Identifying substances and processes involved in the injury of axons
  • Identifying the body’s natural immune messenger molecules that can either turn on or turn off immune attacks
Significant progress is being made in understanding the immune system's involvement in MS, which will help drive breakthrough solutions to change the world for everyone with MS.

We’re making progress

Studies of the immune system in MS laid the groundwork for every disease-modifying therapy now available, and these studies continue to hold promise for finding ways to stop MS. Here are reports of recent progress:

Researchers co-funded by the National MS Society report study results indicating that “Tregs” – regulatory immune cells that are known to be dysfunctional in people with MS – play a role in promoting formation of new myelin following damage. If the results are confirmed through further research, these basic laboratory studies could eventually be translated to promising new therapeutic approaches to stimulating myelin repair to restore function in people with MS. Read more

Treatment with ATX-MS-1467 (Apitope) – an injected immune therapy whose early development was supported by the National MS Society through Fast Forward, the Society’s commercial research funding program – was reported to reduce disease activity on MRI scans in two small open-label studies involving people with relapsing MS. This is an approach to identify pieces of human proteins, called “peptides,” that might be able to reinstate “immune tolerance” – in effect, train immune cells to ignore myelin – to suppress MS attacks. Read more

Scientists at the University of Florida, funded in part by the National MS Society, took a novel approach to turn off immune attacks in mice with an MS-like disease. The team used a harmless virus to deliver a gene coding for a specific component of myelin, a key target of immune attacks in MS. Further research is needed to verify and refine this approach before it can be tested in people. Read more

Sunday, March 4, 2018

Zinbryta (daclizumab), a Therapy for Relapsing MS, is Withdrawn from Market



  • Biogen and AbbVie have announced the voluntary withdrawal Zinbryta ™ (daclizumab) from the worldwide market.
  • Zinbryta is an immune-modulating therapy that was approved in 2016 for people with relapsing MS and generally reserved for people who had an inadequate response to two or more MS therapies.
  • According to a company press release, the European Medicines Agency had raised new safety concerns related to reports of inflammation of the brain or its surrounding tissues (inflammatory encephalitis and meningoencephalitis) among people taking Zinbryta.
  • Individuals currently taking Zinbryta should contact their healthcare providers to determine alternative treatment options, and to continue safety monitoring. According to the medication guide, this would include monthly blood tests to monitor liver function for up to six months after the last dose.