Mobility Support Devices for Secondary Progressive MS: Braces, Walking Devices, and More

Secondary Progressive Multiple Sclerosis (SPMS) can cause a variety of symptoms, including dizziness, fatigue, muscle weakness, muscle tightness, and loss of sensation in your limbs.
Over time, these symptoms may affect your ability to walk. According to the National Multiple Sclerosis Society (NMSS), 80 percent of people with MS experience challenges walking within 10 to 15 years of developing the condition. Many of them can benefit from using a mobility support device, such as a cane, walker, or wheelchair.
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It may be time to consider using a mobility support device if you’ve been:
feeling unsteady on your feetlosing your balance, tripping, or falling frequentlystruggling to control the movements in your feet or legsfeeling very tired after standing or walkingavoiding certain activities because of mobility challenges
A mobility support device may help prevent falls, conserve your energy, and increase your activity level. This can help you enjoy better overall health and quality of life.
Take a moment to learn about some of the mobility support devices that may help you stay mobile with SPMS.
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Guidance for the use of disease modifying therapies during the COVID-19 pandemic

People with MS have asked for guidance on the use of disease Modifying Therapies (DMTs) during the COVID-19 pandemic. There are numerous recommendations circulating that attempt to provide clarity and guidance, however, differences among the recommendations have created confusion. DMT decision making varies significantly from country to country, ranging from highly provider-directed to a collaborative decision-making model.
The MS Coalition has endorsed global advice from the MS International Federation on DMT use during the COVID-19 pandemic. Their recommendations provide detailed guidance for the initiation and continuation of DMTs
The MS Coalition has also endorsed recommendations from The National MS Society’s National Medical Advisory Committee, which believes DMT decisions should be individualized and made collaboratively between the person with MS and his/her healthcare provider.  These recommendations are:
People with MS should follow CDC guidelines and these additional recommendations for people at higher risk for serious illnesses from COVID-19.People with MS should continue disease modifying therapies (DMTs) and discuss specific risks with their MS healthcare provider prior to stopping a DMT.Before starting a cell depleting DMT* or a DMT that carries warnings of potentially severe increase in disability after stopping**, people with MS and their MS healthcare providers should consider specific risks (e.g. age, comorbid health conditions, location) and benefits.
We are continuing to monitor this quickly evolving situation and these recommendations may be modified as data becomes available.
* Cell depleting therapies include: Lemtrada, Mavenclad, Ocrevus and Rituxan (used off-label in MS)
** DMTs with a warning of potentially severe increase in disability after stopping include: Gilenya and Tysabri

*** Members of the MS Coalition include: Accelerated Cure Project for Multiple Sclerosis, Can Do MS, Consortium of Multiple Sclerosis Centers, International Organization of Multiple Sclerosis Nurses, MS Views and News, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National Multiple Sclerosis Society and United Spinal Association


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The Importance of Getting Out of the House Cannot Be Overstated

When multiple health problems pile up, it’s natural to want to hibernate, but it can get lonely and boring! 
Learn how the blogger Trevis Gleason finds a workaround to staying home.

It can sometimes be too easy to sequester oneself, but it’s so important not to.
Last Updated: March 06, 2020

I had a physiotherapy appointment recently, and as I rode in the car, I noted aloud how green the pastures and fields had become. Then I started to think back and realized that since I’d been released from the hospital on December 21, I hadn’t been more than 2 miles from our home.
Multiple sclerosis (MS) and other health mangles have wrung me nearly dry since that Christmas clemency, so it was both easy and rather required that I stay close to base. But even in a state of doubled fatigue, I was acquiring a moat between Milltown Cottage and even our closest neighbors.
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There’s Only So Much Online Solitaire One Can Play

I did have to amend my first recollection, as I had been further afield than 2 miles. That one time, however, we were away before light for a follow-on procedure under general anesthetic and home well after dark in a drug-induced haze, so I could be excused for my lack of memory of that trip.
Add to this the fact that my wife has recently taken on extra days of work to cover someone’s maternity leave, and my situation was teetering toward desperate. My mind was turning to mush; my ear for the lyric, local accent was beginning to numb; and there’s only so much online solitaire one can play … I had to figure a way to get out and around.
A Taxi Gets Me Out for a Shop, a Flirt, and a Pint
As most of us with chronic illness are wont to do, I found a work-around.
Even the ¾-mile trek into the town was too much for me, so a local taxi kept me from having to call on friends for a lift (though they have quite willingly offered such service). I can’t get around very easily in my current state, so I don’t do much when I get there, but at least I’m out of the house.
I pick up a couple of things we might need from the shop, which is never a lonely encounter in our town. It affords me a chance to catch up with a bit of gossip, show that I’m not at the undertaker’s yet, and flirt with the ladies at the cash. Never has a trip for a liter of milk been more satisfying.
Then, the best part of my new Friday routine: A few doors down from the grocery is my local pub.
A quiet back room where I can read the papers, complain about the price of wool with some of the regulars, and enjoy a self-prescribed Rx pint of the black stuff. Caryn collects me on her way home from work, and we grab a simple takeaway for our dinner.
CONTINUE reading Trevis' story by clicking here .

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The Connection Between Depression and MS

When you have Multiple Sclerosis (MS), symptoms like fatigue, numbness, and weakness may be your main concern. But depression is a common symptom, too.
People with MS are up to two or three times more likely to become depressed than those without the condition. There are a few reasons why up to half of people with MS will experience depression at some point in their lives:
Nerve damage can affect the transmission of signals related to mood.Living with a chronic illness can cause stress and anxiety.Drugs like steroids and interferons that treat MS can cause depression as a side effect.
Often, depression is the one MS symptom that’s overlooked and left untreated. Here are a few tips to help you care for your mental health while managing your MS.

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1. Check your symptoms

Everyone feels down from time to time. A brief shift in your mood doesn’t necessarily mean you’re depressed. But if you’ve continuously been sad for two weeks or longer, it’s time to take a closer look.
Ask yourself these questions:
Do you always feel sad, hopeless, helpless, worthless, or empty?Are you more irritable than usual? Do you snap at the people around you?Have you lost interest in things you once loved to do? Does nothing you do seem to excite you?Do you feel extra tired or drained of energy?Do you have trouble sleeping, or sleep too much?Do you have difficulty concentrating or remembering?Do you notice strange aches and pains that you can’t connect to a physical cause?Have you noticed any changes in your appetite? Either eating too much or too little?
If you’ve had any of these symptoms, call your doctor or a mental health professional for help.

2. Talk to your doctor


If you think you’re depressed, tell your primary care doctor. Just as with other conditions, there are medications and alternative therapies available to help you feel better. Also, inform the specialist who treats your MS. It’s possible that a change in your MS medication could be enough to improve your mood.
It’s also helpful to talk to a mental health expert like a psychologist, psychiatrist, or counselor. They can offer strategies to help you cope better with the stresses of your condition. Ideally, find someone who has experience working with people who have chronic conditions like MS.


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From The CDC - Center for Disease Control : Coronavirus Disease 2019 (COVID-19)

Who is at higher risk?
Early information out of China, where COVID-19 first started, shows that some people are at higher risk of getting very sick from this illness. This includes:
Older adultsPeople who have serious chronic medical conditions like:Heart diseaseDiabetesLung disease

Get ready for COVID-19 now

Take actions to reduce your risk of getting sick
If you are at higher risk for serious illness from COVID-19 because of your age or because you have a serious long-term health problem, it is extra important for you to take actions to reduce your risk of getting sick with the disease.
Stock up on supplies.Take everyday precautions to keep space between yourself and others.When you go out in public, keep away from others who are sick, limit close contact and wash your hands often.Avoid crowds as much as possible.Avoid cruise travel and non-essential air travel.During a COVID-19 outbreak in your community, stay home as much as possible to further reduce your risk of being exposed.
Have supplies on hand
Contact your healthcare provider to ask about obtaining extra necessary medications to have on hand in case there is an outbreak of COVID-19 in your community and you need to stay home for a prolonged period of time.If you cannot get extra medications, consider using mail-order for medications.Be sure you have over-the-counter medicines and medical supplies (tissues, etc.) to treat fever and other symptoms. Most people will be able to recover from COVID-19 at home.Have enough household items and groceries on hand so that you will be prepared to stay at home for a period of time.
Take everyday precautions
Avoid close contact with people who are sick.
Take everyday preventive actions:
Clean your hands oftenWash your hands often with soap and water for at least 20 seconds, especially after blowing your nose, coughing, or sneezing, or having been in a public place.If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol.To the extent possible, avoid touching high-touch surfaces in public places – elevator buttons, door handles, handrails, handshaking with people, etc. Use a tissue or your sleeve to cover your hand or finger if you must touch something.Wash your hands after touching surfaces in public places.Avoid touching your face, nose, eyes, etc.Clean and disinfect your home to remove germs: practice routine cleaning of frequently touched surfaces (for example: tables, doorknobs, light switches, handles, desks, toilets, faucets, sinks & cell phones)Avoid crowds, especially in poorly ventilated spaces. Your risk of exposure to respiratory viruses like COVID-19 may increase in crowded, closed-in settings with little air circulation if there are people in the crowd who are sick.Avoid all non-essential travel including plane trips, and especially avoid embarking on cruise ships.
If COVID-19 is spreading in your community
Take extra measures to put distance between yourself and other people to further reduce your risk of being exposed to this new virus.
Stay home as much as possible.Consider ways of getting food brought to your house through family, social, or commercial networks
If a COVID-19 outbreak happens in your community, it could last for a long time. (An outbreak is when a large number of people suddenly get sick.) Depending on how severe the outbreak is, public health officials may recommend community actions to reduce people’s risk of being exposed to COVID-19. These actions can slow the spread and reduce the impact of disease.
Have a plan for if you get sick
Consult with your health care provider for more information about monitoring your health for symptoms suggestive of COVID-19.Stay in touch with others by phone or email. You may need to ask for help from friends, family, neighbors, community health workers, etc. if you become sick.Determine who can care for you if your caregiver gets sick.
Watch for symptoms and emergency warning signs
Pay attention for potential COVID-19 symptoms including, fever, cough, and shortness of breath. If you feel like you are developing symptoms, call your doctor.If you develop emergency warning signs for COVID-19 get medical attention immediately. In adults, emergency warning signs*:Difficulty breathing or shortness of breathPersistent pain or pressure in the chestNew confusion or inability to arouseBluish lips or face
*This list is not all inclusive. Please consult your medical provider for any other symptoms that are severe or concerning.

What to do if you get sick

Stay home and call your doctor.Call your healthcare provider and let them know about your symptoms. Tell them that you have or may have COVID-19. This will help them take care of you and keep other people from getting infected or exposed.If you are not sick enough to be hospitalized, you can recover at home. Follow CDC instructions for how to take care of yourself at home.Know when to get emergency help.Get medical attention immediately if you have any of the emergency warning signs listed above.

What others can do to support older adults

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UPDATED information: The coronavirus and MS – What You need to know - ALL MS Patients need to Read this message

UPDATED information: The coronavirus and MS – What You need to know - ALL MS Patients need to Read this message
Last updated: 13th March 2020


 

Global COVID-19 advice for people with MS
  provided by: MS International Federation

COVID-19 is a new illness that can affect your lungs and airways. It is caused by a novel coronavirus that was first detected in people in China in December 2019 and has since spread to other parts of the world.
There is currently no evidence on how COVID-19 affects people with Multiple Sclerosis (MS). The advice below was developed by MS neurologists and research experts from MSIF’s member organisations. Click here to download the full statement including the list of consulted individuals and organisations.
This advice will be reviewed and updated as evidence about COVID-19 becomes available.

Advice for people with MS

People with underlying lung and heart conditions and those aged over 60 years are more likely to experience complications and become severely ill with the COVID-19 virus. This group will include many people living with MS, especially those with additional health complications, mobility issues and those taking some MS treatments.
All people with MS are advised to pay particular attention to guidelines for reducing the risk of infection with COVID-19. Older people with MS, especially those who also have lung or heart diseases should take extra care to minimise their exposure to the virus. The World Health Organization recommendations include:
Wash your hands frequently with soap and water or an alcohol-based hand rubAvoid touching your eyes, nose and mouth unless your hands are cleanTry to keep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezingWhen coughing and sneezing, cover your mouth and nose with a flexed elbow or tissuePractise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them.
In addition, we recommend that people with MS should:
Avoid public gatherings and crowdsAvoid using public transport where possibleWhere possible, use alternatives to face-to-face routine medical appointments (for example, telephone appointments).
Caregivers and family members who live with, or regularly visit, a person with MS should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

Advice regarding disease-modifying therapies for MS

Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. Some MS medications might increase the likelihood of developing complications from a COVID-19 infection but this risk needs to be balanced with the risks of stopping treatment. We recommend that:
People with MS currently taking DMTs continue with their treatment.
People who develop symptoms of COVID-19 or test positive for the infection discuss their MS therapies with their MS care provider or another health care professional who is familiar with their care.
Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region.
Those who are due to start on a DMT but have not yet done so, should consider selecting a treatment that does not reduce specific immune cells (lymphocytes). Examples include: interferons, glatiramer acetate, or natalizumab. Medications that reduce lymphocytes over longer intervals include alemtuzumab, cladribine, ocrelizumab and rituximab.
 The following oral DMTs may reduce the ability of the immune system to respond to an infection: fingolimod, dimethyl fumarate, teriflunomide and siponimod. People should carefully consider the risks and benefits of initiating these treatments during the COVID-19 pandemic.
People with MS who are currently taking alemtuzumab, cladribine, ocrelizumab, rituximab, fingolimod, dimethyl fumarate, teriflunomide or siponimod and are living in a community with a COVID-19 outbreak should isolate as much as possible to reduce their risk of infection.
Recommendations on delaying second or further doses of alemtuzumab, cladribine, ocrelizumab and rituximab due to the COVID-19 outbreak differ between countries. People who take these medications and are due for the next dose should consult their healthcare professional about the risks and benefits of postponing treatment.

Advice regarding aHSCT

Autologous Haematopoietic Stem Cell Treatment (aHSCT) includes intensive chemotherapy treatment. This severely weakens the immune system for a period of time. People who have recently undergone treatment should extend the period they remain in isolation during the COVID-19 outbreak. People who are due to undergo treatment should consider postponing the procedure in consultation with their healthcare professional.

Advice for children or pregnant women with MS

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 US Centre for Disease Control and Prevention website.
There is no specific advice for children with MS; they should follow the advice above for people with MS.

More information from the World Health Organisation.

You can also find out the answers to some commonly asked questions about COVID-19 on the World Health Organization’s website.
Find out more about COVID-19 in the short informational video below, from the World Health Organization.


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This March, Celebrate Your Support Partners

This March, Celebrate Your Support Partners

Join us in recognizing the support partners who help empower and inspire the Multiple Sclerosis (MS) community and learn more on AboveMS.com to discover #MySupportHero and access helpful support resources.



March is Multiple Sclerosis (MS) Awareness Month, and we are excited to celebrate the fifth year of #MySupportHero along with Biogen and other MS organizations— a program designed to celebrate and say thank you to those who provide incredible support and inspiration for people living with MS.
#MySupportHero offers a special way to celebrate the countless unsung heroes who play an important role in standing by people with MS. Whether it’s family, friends, healthcare professionals, pets or support groups, this is our way of saying THANK YOU to those who strengthen the MS community!


Join in on #MySupportHero:
·        Recognize your support partner(s) on social media using the #MySupportHero hashtag:
o    Consider posting a photo or short video honoring this special person in your life
·        Share words of appreciation or why you’re grateful for your support heroes in honor of the fifth year of #MySupportHero

Learn more about #MySupportHero on
AboveMS.com, Above MS Facebook and @AboveMSBiogen.

Note: 
Biogen does not have any involvement with content unrelated to #MySupportHero on MS Views and News’ website and social media pages.
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The emotional and cognitive effects of MS are often its greatest challenges

The emotional and cognitive effects of MS are often its greatest challenges
Some of the most common but hidden symptoms of MS are the changes people may experience related to cognition and their emotions. These changes can affect the way people feel about themselves and alter their cognitive functions. For many, the emotional and cognitive effects of the disease represent its greatest challenges.

Emotional changes

There are a number of emotional responses that appear to be common as people learn to deal with having MS. Uncertainty, stress and anxiety are the most common, not just during diagnosis, but throughout the course of the disease.
A person with MS may grieve for their life before MS and their self-image may take a while to adjust to having MS. Other emotional changes that may occur in MS include clinical depression, bipolar disorder, and mood swings. All of these are more common among people with MS than in the general population. Depression and bipolar disorder require professional attention and the use of effective treatments.
Emotional lability appears to be more common, and possibly more severe, in people with MS. This may include frequent mood changes, for example from happy to sad to angry.
It is believed that the causes are the extra stress brought on by MS as well as neurological changes.
Uncontrollable laughing and crying is a disorder affecting a small proportion of people with MS, and is thought to be caused by MS-related changes in the brain.

Low self-esteem

Having MS can affect self-esteem. There may be times when it’s difficult to do everything a person is used to doing, or they may have to do things differently. Focusing too much on the negative aspects can feel overwhelming. This one minute infographic gives some confidence boosters and tips for managing low self-esteem and MS. Thanks to the UK MS Society for providing the text for this infographic.

MS organisations around the world have translated the infographic into a range of languages.
Low self-esteem and MS (English)Baja autoestima y EM (Spanish)Autoestima e Esclerose Multipla (Portuguese)Psychologiczne aspekty SM – samoocena (Polish)MS en een laag zelfbeeld (Dutch)Sclérose en plaques et estime de soi (French)טרשת נפוצה והערכה עצמית נמוכה (Hebrew)
If you’re interested in translating it into an additional language, contact This email address is being protected from spambots. You need JavaScript enabled to view it.

Cognitive changes

Cognition refers to the “higher” brain functions such as memory and reasoning. About half of all people with MS will not experience any cognitive changes, but for others, the most commonly affected aspects of cognition are:
MemoryAttention and concentrationWord-findingSpeed of information processingAbstract reasoning and problem solvingVisual spatial abilitiesExecutive functions
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The coronavirus and MS – what you need to know

The coronavirus and MS – what you need to know
Information showing below is provided by MS International Federation

What does the coronavirus (COVID-19) mean for people living with MS?
Last updated: 13th February 2020

The ‘novel coronavirus’ (recently named by the World Health Organization as COVID-19) is a respiratory illness that has not previously been seen in humans. COVID-19 is a strain of coronavirus that was first detected in China in December 2019, and has since spread to other parts of the world.

What does COVID-19 mean for people living with MS?

As this strain of the coronavirus is new, we still need to learn more about how it may affect people with MS.
Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. We know that people with MS who are receiving these therapies can face an increased risk of complications related to viral infections.
If you are taking a DMT and are either exposed to COVID-19 or are confirmed to have the COVID-19 infection, please contact your neurologist or other medical professional.

What are the symptoms of COVID-19 and how to protect against it?

symptoms of COVID-19 include difficulty breathing, a cough and a high temperature, which can progress to pneumonia.
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The World Health Organization provides a few basic measures for protecting against COVID-19. These include:
Wash your hands frequently with an alcohol-based hand rub or soap and waterWhen coughing and sneezing, cover your mouth and nose with a flexed elbow or tissueKeep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezingAvoid touching eyes, nose and mouthPractise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them
It is important to avoid contact with anyone who may have been living or travelling in an area where COVID-19 has been circulating. Get the latest updates on where there have been reported cases of COVID-19 from the World Health Organization here.
You can also find out the answers to some commonly asked questions about COVID-19 on the World Health Organization’s website.
Find out more about COVID-19 in the short informational video below, from the World Health Organization.
             READ MORE by CLICKING HERE



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Addressing social stigmas and barriers in our MS and disabled communities

By Mary Pettigrew



“We are challenged by people who perpetuate stigmas about disability; we are challenged by people who cannot be bothered to make locations accessible; we are challenged by inadequate legislation.” 

-- Emily Ladau, disability rights activist and blogger

Each day, I navigate through life as a person with MS and as a patient advocate. Each day, I take notice of my surroundings, paying close attention as to how accessible and inclusive things are in my city. There are many areas in need of improvement and are lacking in the practices and policies necessary to accommodate the needs of our society as a whole – for people with and without disabilities. The more we advocate for change, the better chance to create a society where all people can participate more fully. But, before we can remove the barriers and social stigmas throughout our communities, we must first identify what they are. I will touch on just a few of these issues in this article. 

Language

Most people probably don’t realize the hidden ableism behind the euphemisms. There are several inappropriate euphemisms which continue to be used in our world. Terms like handicapped, challenged, and special needs tend to bother me the most. Most people simply don’t know any better and mean no harm, but that doesn’t make it acceptable. Good intentions or not, words, labels, euphemisms and actions can be disempowering, patronizing, and even hurtful. 

It’s likely I have used these terms at a time before my own diagnosis, but 20 years later, I know differently. I am a person living with MS. I do believe people have the right to refer to themselves in the ways they feel most comfortable as long as they don’t push it onto others. I am a person living with MS.

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To explore the full etymology of the word handicap, go here.


Body language can speak just as loud as words sometimes. When people look at those of us with disabilities differently, we notice. Thus, making it all the more difficult for us to feel comfortable in our environment. I’ve seen people speaking about individuals with disabilities as if they don’t exist, even though they’re right there and can hear every word. Others think they are being kind in their interactions, some even patting the shoulder of people in wheelchairs or speaking to them in child-like tones. This behavior is more destructive than helpful and the nondisabled population needs to understand.

Speak up for yourself and for others because the more we can do to educate society, the more opportunity for change. Also, learn to use People First Language. If you are a “disabled person” or a “person living with MS,” then tell people that’s what you wish to be called if the situation calls for clarity.

Disabled parking placards

No matter if your symptoms are invisible or visible, your doctor might determine you need to use a disabled placard and will provide the necessary forms to acquire one. Too often I’ll see conversations on social media about the negative experiences people have had when using their placard. Some are faced with scowls, verbal confrontations, followed into stores, find cruel notes on cars, or even had the police called on them. This is beyond unacceptable and is one of the most upsetting examples of judgement and stigma towards people with MS. If not handled swiftly and effectively, our mental health becomes vulnerable to anxietyfear, agoraphobia, and the Worsening of other MS symptoms. It’s important for us as humans to get out. We all need mental stimulation and socialization, so it’s critical we not take this basic need away from ourselves.

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Learn about Cruising and MS

By Laura Kolaczkowski · February 21, 2020

Vacation travel can present challenges for anyone. Life with MS also has its own challenges. Combine MS and vacation and you can get an entirely new set of challenges. When the community managers at MultipleSclerosis.net asked me to write about taking vacation cruises while living with MS, I jumped at the chance. Actually, the truth is I can’t jump anymore, but I am more than happy to share several tips I have learned of how to make the most of cruising. Not everyone will ever take a cruise, or even be interested in doing so. But in case you are traveling by big boat, this is the first in a series of articles where I share some personal tips and tricks to make the most of your vacation.

Attitude is everything

don’t do well with large crowds, and it would be heavenly if we could cruise on a small ship with only a handful of passengers and a very attentive crew. Unfortunately, we don’t have access to a private yacht and instead cruise on the big liners, along with thousands of other vacationers. The good news is, there is still an attentive crew to attend to your needs and ways to avoid the crowd.
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A mix of different types of travelers

Our most recent trip was on the Norwegian Cruise Line ship Escape, and we were onboard with 5,000+ strangers. The mix of cruisers range from the young crowd able to party all day and night, to the more sedentary travelers like my husband and me who are content to just do very little and looking to relax.

You can (mostly) avoid the crowd

Fortunately, on most ships, you only encounter the massive crowd during embarkations/disembarkation (boarding on and off the ship) and can find places that are less crowded and chaotic if that is your choice. You can mingle with others at shows, bingo, and other activities on board following a schedule that runs from sunrise to well after midnight each day. For us, quiet time sitting on the balcony of our cabin is more our style.
Realistic expectations
The glossy cruise ship brochures highlight the good life of sitting poolside but the reality is with 5,000 people on board, and a pool with a capacity limit of about 100, getting a spot in the water is a tough if not impossible challenge. Often even finding a chair on the deck to catch some sun is difficult.

Finding quiet places on the ship

Alcohol tends to flow morning, noon and night, and can affect the social manners of many people who otherwise would be more considerate. Don’t be surprised if in busy places on board you feel like you are in Times Square in New York City as the ball drops at midnight on New Year’s Eve. Elbow to elbow crowds are not unusual during peak times, but it is also easy to find the quiet places on the ship where you can be out of the flow.
Cruise ships are small floating cities, and you can expect to walk a lot so pack good hiking shoes. Getting on and off the ship at the various ports usually involves navigating lengthy piers. Some piers have transportation while others require the passengers to travel by their own means.
NCL’s Escape docked at Harvest Caye, Belize

State your needs clearly

It is absolutely essential that you know if you will need any special accommodations before departing for a cruise, and you must state them clearly when you make the reservation.

Call the cruise line’s office of accessibility needs

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A Love Triangle: Her, Him and MS

A Love Triangle: Her, Him and MS
By The National MS Society                                            
Building a successful relationship is hard work. Throw MS into the equation, and it can be even more challenging.

We talked to Kate and Frank, married for over 10 years, to discuss how MS affects their relationship and family life.

How has MS changed you as a person?
 
Kate: As a care-partner, MS has made me more aware that every day is unique, and one bad day does not mean that another will follow. I can say this now, a few years into our new life as an MS family. But when we had a baby and a toddler while learning how to maneuver through a diagnosis, I felt like one bad day would last forever. I try a little harder now to not dwell on one bad day, or even one bad morning. It’s also made me “try” to take better care of myself and recognize when I need a break. We’ve often prioritized Frank’s rest, and that meant that I would shoulder most of the responsibilities of our family and home. It’s taken a few years for all of us to realize that no one person can do everything and that I can only help others if I help myself sometimes first.
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Frank: MS has changed me in almost every way a person can change. It has given me a new approach to life and made me recognize and value the “good times” more than I ever have because there have been plenty of more challenging times. It has also changed me physically since I’ve been exercising more than I ever have.

How has MS changed your marriage?

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Advancing MS: Coping with Depression, Stress, and Anger


Multiple Sclerosis (MS) can profoundly affect your physical health, but it can also take a serious toll on your mental health. Depression, stress, anxiety, and mood swings are all common in people with advancing MS, but it’s possible to manage these emotional changes. Here are some ways to reduce stress, create a healthier mindset, and maintain a better quality of life.

If you have MS, you know that each day brings new challenges and questions. Constant uncertainty and worry can cause almost anyone to feel anxious, stressed, or fearful.
According to the Cleveland Clinic, the most common emotional changes you may experience with MS include:
depressive symptoms and episodesgrieving for the loss of a “normal” lifestress and anxietycognitive changesangerinsomnia


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Your experience of the disease may lead to depression. For example, your changing body and mind may affect how you feel about yourself and your life. The disease itself may also cause depression: As MS attacks the myelin, your nerves may no longer be able to correctly transmit the electrical impulses that affect your mood.
The good news is that depression can be treated. In most cases, doctors prescribe a combination of therapy and antidepressant medication. Talk therapy may be one-on-one with a licensed professional, or your doctor may suggest meeting in group therapy sessions with other people who also have MS.



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Menopause and MS

Menopause and MS

At some point between their late 40s and early 50s, most women will start to experience the first signs of menopause. During this life transition, estrogen levels in the body decline. Menstrual cycles become unpredictable and eventually stop.
While menopause can bring a welcome respite from your monthly periods, it can also usher in new symptoms like hot flashes, vaginal dryness, and interrupted sleep. For women with Multiple Sclerosis (MS), it may be hard to tell the difference between symptoms of MS and signs of menopause.
Some women find their MS gets worse once their menstrual cycles end.

If you’re in your late 40s or early 50s and you have MS, it can be hard to tell whether you’re in menopause or you’re experiencing an MS flare. symptoms of the two conditions can look very similar.
symptoms common to both menopause and MS include:
fatiguebladder problemslack of interest in sex or trouble getting arousedvaginal drynesstrouble concentratingsleep problemsmood swingsdepression
If you’re not sure whether you’re entering menopause or your MS worsens, see a gynecologist. A blood test can check levels of estrogen and other hormones to confirm if you’re starting menopause. 

MS and menopause age
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Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS

Ocrevus Use Rises Among New Starters with RRMS, Loses Ground to Other Therapies in PPMS
Feb 17, 2020 - By Ed Tobia




Ocrevus (ocrelizumab) bolted out of the starting gate after it was approved for use in the U.S. about three years ago. However, though its use by people with relapsing forms of Multiple Sclerosis continues to rise, fewer people with Primary Progressive MS are taking the medication. These findings from Spherix Global Insights are similar to anecdotal reports that I’ve been reading online by people who are being treated with Ocrevus.


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First-line use of Genentech‘s Ocrevus (ocrelizumab) for patients with multiple sclerosis (MS) has remained Stable through 2019 compared to 2018, according to the latest Spherix Global Insights report.
However, the latest edition of “RealWorld Dynamix: DMT New Starts in Multiple Sclerosis (US),” based on 1,006 charts of MS patients prescribed their first disease-modifying therapy (DMT), confirms that Ocrevus prescriptions still lag behind other first-line medications, including Teva‘s Copaxone (glatiramer acetate), Biogen‘s Tecfidera (dimethyl fumarate), Mylan‘s generic glatiramer acetate, and Novartis‘ Gilenya (fingolimod).

In turn, Ocrevus use as treatment starter almost doubled among relapsing-remitting MS (RRMS) patients, while falling by half among primary progressive MS (PPMS) patients, equalling out its overall use.
Click here to read the full story.


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See the latest open-label extension data for Ocrevus


Examine 2 years of controlled and 3+ years of open-label extension efficacy and safety data.











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3 most common vision problems in MS and how to cope

Vision problems are often the first symptoms of Multiple Sclerosis for many people and one of the most common invisible symptoms. Fortunately, many vision problems associated with Multiple Sclerosis are temporary and the prognosis for recovery is good.
However temporary vision problems may be, they are still inconvenient, uncomfortable and downright annoying. Below are some common vision problems for people with Multiple Sclerosis and suggestions for how to cope with them.
Photo courtesy of iStock
Optic neuritis
One of the most common visual problems associated with MS is optic neuritis — inflammation of the optic (vision) nerve. During a flare up, a blurred or dim spot (scotoma) may occur in the center of your visual field, leaving your peripheral vision unaffected. You may experience aching pain with eye movement, blurred vision, dim vision, loss of vision, or dimming or loss of color vision. Optic neuritis usually occurs in only one eye however it is possible for you to experience it in the other eye at some time in the future.
While the effects of optic neuritis are frightening and uncomfortable, in most cases your vision will return once inflammation subsides. Residual symptoms are possible and include dimming or blurring of vision when you are fatigued, stressed or overheated.
How to cope: In most cases, optic neuritis will resolve on its own, but in persistent cases, you may consider talking with your doctor about high doses of glucocorticoids, such as intravenous methylprednisolone or prednisone pills to help accelerate recovery. If you are prone to flare ups, consider taking regular breaks throughout the day to rest your eyes and avoid unnecessary strain.
Photo courtesy of iStock
Diplopia
Diplopia, or double vision, occurs when the nerves that control eye movement are inflamed or damaged. Normally, the muscles work in a coordinated way sending one image of what you’re seeing to your brain, but when diplopia occurs, muscles on one side may be weak from nerve damage making your eye movements no longer coordinated. When this happens you to see two side by side images or one image on top of another.
How to cope: Diplopia can be temporary or persistent and may resolve without treatment. When diplopia is a new symptom, it may be part of a relapse of MS and a brief course of corticosteroids may be helpful. You may also consider patching one eye while driving, reading or completing other short tasks. Special eyeglass lenses known as prism lenses may also be helpful for persistent diplopia as they help align the two images into one.
Photo courtesy of iStock
Nystagmus
Nystagmus, or “dancing eyes,” is an involuntary and uncontrolled movement of the eyes that can impair vision. Movement is usually rapid and can be up and down, side to side or rotating. Nystagmus may occur when you look straight ahead or when you move your eyes up and down or side to side. It can make you feel like the world is moving and cause you to feel dizzy or nauseous.
How to cope: Nystagmus may come and go or may be persistent. At times when your eyes are “dancing”, try tilting your head at an angle as it may help to lessen eye movement. Using magnifying glasses, adequate lighting, large-print reading materials, tinted glasses or a hat can reduce glare and improve vision. Treatment for nystagmus is limited and may include off-label use of medications such as gabapentin.
To learn more about vision problems in MS, visit the Society’s resource page on Vision Problems.
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January 2020   - article source

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The women of WeAreILLmatic portray a powerful MS community

by Brandie Jefferson

 
Victoria Reese has created a community where women living with MS can learn about the disease, ask questions, give advice and meet people who face similar challenges. Photo by Joseph Gray
Victoria Reese gets things done.
When she was diagnosed with Multiple Sclerosis at 25, a few months after moving to Los Angeles, she returned home to Detroit for a week, “to deal,” she says, then headed back to California.
When working for someone else didn’t allow her to flex her creative and entrepreneurial muscles, she went into business for herself, starting her own brand management company, Victor Group LA.
“If I can’t flex my muscles,” she says, “you’re not going to see me shine.”
And when she didn’t see many people who looked like her in campaigns and organizations that support people with MS, she started her own, launching WeAreILLmatic with the blessing of the music superstar from whose album the campaign’s name is derived—legendary rapper Nas.

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WeAreILLmatic has morphed into a community where young black women living with MS can learn about the disease, ask questions, give advice and meet people who face similar challenges.
“If I know about a problem,” Reese says, “maybe I can help solve it.”
A lack of research
In 2012, Reese had a problem of her own. She visited her primary care physician after experiencing numbness in her legs. “The doctor said, ‘It’s your job. You’re stressed.’” Then came the migraines and facial paralysis. Maybe it was depression, her doctor said. Reese was prescribed antidepressants. The diagnosis, however, just didn’t seem right.
She was referred to a neurologist, and later that same year Reese was diagnosed with MS.
“I started to do my own research and didn’t see many [scholarly] articles about black people with MS and the ones I found were outdated,” she says. Brochures insisted that MS was a disease found most often in young women of northern European descent, and imagery often reflected that. “I thought, ‘Am I that rare?’ I didn’t see anything specifically geared toward me.”      
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People with MS should avoid dairy in their diet

By: Lucy Noble - 

Replacing Dairy Products in your Diet

There are so many dairy-free options available that avoiding dairy doesn't need to mean that you miss out on the food you love.

OMS strongly advises that people with MS avoid dairy in their diet because research shows a high correlation between MS and dairy products, specifically because of particular proteins in cow’s milk. Here you can read an easy list of foods to enjoy and avoid on the OMS recovery program
There are plenty of dairy alternatives to enjoy, and the options keep on growing. 

Dairy-free Milk Options

While soy products offer the highest protein and are better for baking, some people think almond or rice milk taste better on cereal.Check the ingredients as some alternative milks contain oils which are restricted on the OMS Program. 

Here's some pros and cons of some of the dairy-free milk options. 

Almond Milk

✔ Nutty flavour, which can taste nice in cereal or hot chocolate but doesn't work for every recipe.
✔ You can buy sweetened or unsweetened almond milk
✔ Good in coffee and hot drinks.
✔ Low in fat and calories.
X Often more expensive than other milks - watch out as cheaper versions bulk out with thickeners and have low almond content. 
X Can also split when heated. 

Oat Milk

✔ A versatile option.
✔ Sweet.
✔ Lowers cholesterol.
✔ Heats well and doesn't curdle.
✔ Good for smoothies, soups and cereal. 
✔ Good in a cup of tea as it doesn't have a strong flavour and doesn't curdle. 
X Lower in protein 

Rice Milk

✔ Thinner and more watery.
✔ Good in desserts if you want a thickening agent. 
✔ Nice refreshing drink on its own. 
 Higher in sugar 
 Low levels on arsenic - the Food Standards Agency advises against children under four-and-a-half having it at all


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Soy Milk

✔ Widely available option.
✔ Can get sweetened or unsweetened
✔ Best for baking due to higher protein content.
✔ Found to be the more nutritious plant milk. 
X Can be a common allergen. 
X Watch out for added oils in some brands. 
X Can split in hot drinks 
Click here to read about Hemp, Cashew and Hazelnut milks, plus more of this article


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An important clue on the role of diet in MS?

An important clue on the role of diet in MS?
New research from a team of researchers from McGill University, Canada, have made a link between reducing the amount of methionine (an amino acid found in animal products) in a person's diet and development and progression of MS and other disorders.

The very fact that you are reading this likely means that you have heard about and/or are interested in the role of lifestyle interventions as a way of managing MS
Dating back to the pioneering research of Prof. Roy Swank in the 1940’s on the role of fats in MS progression, corroborated by more recent large-scale studies from around the globe, not to mention Prof. Jelinek’s vital work at the NEU, we know that diet and lifestyle play an enormous part in the prevention and the progression of this condition.
Further papers, published in the past two years have begun to unpick the key mechanisms behind diet qualityfasting, obesity and blood lipid levels and their effects on MS relapse rates and disability progression. 
But yet, there is still much work to be done. There is conflicting evidence on which, if any, dietary strategy works best to prevent and treat MS, and doctors generally remain extremely skeptical of lifestyle-based interventions. One of the issues is that the fundamental mechanisms underpinning this disease still evade us, and it can sometimes feel (from the outside at least) like scientists are feeling around for that elusive key in the dark.

Perhaps though, they have now found one? 

A team of researchers from McGill University, Canada, have just published a paper demonstrating a potential pathway for the essential amino acid (meaning it cannot be made by the body, but rather must be consumed in our diet) methionine in the management of MS

Methionine is a key building block of many proteins in the body and is known have a significant role in regulation of the immune system (an important clue!). T-cells (a type of white blood cell known to be involved in the immune attack of myelin in MS) require high levels of the amino acid to activate and to change into the types of cell that then seek out and attack a target.  The theory then would be that reducing consumption will reduce the levels of methionine in the blood available for T-cells, which in turn would reduce the inflammatory response. 

“Ok, makes sense,” I hear you say, "but will it actually work?" 


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