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Tuesday, February 25, 2020

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.
If you’re interested in translating it into an additional language, contact info@msif.org

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:
  • Memory
  • Attention and concentration
  • Word-finding
  • Speed of information processing
  • Abstract reasoning and problem solving
  • Visual spatial abilities
  • Executive functions

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The coronavirus and MS – what you need to know

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 water
  • When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue
  • Keep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezing
  • Avoid touching eyes, nose and mouth
  • Practise 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.
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Addressing social stigmas and barriers in our MS and disabled communities

By Mary Pettigrew


Disability_Stigma_Horizontal-(1).jpeg
“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.
View of docked cruise ship
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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