MS Views and News Be empowered with MS views and news. To receive The MS BEACON e-Newsletter, CLICK HERE - -

Please visit our MS learning channel on YouTube, which provides hundreds of MS videos presented by MS Experts across the USA, from many of our recorded education programs. Archived here: www.youtube.com/msviewsandnews -- Additionally, please visit our Social media platforms: Facebook, Twitter, and Instagram

Important Resources for the MS community are found on the left side of this blog.

Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Saturday, September 1, 2018

Ready set go: MS5000 - this 50 day journey began on Saturday Sept 1st

A note from Paul Pelland (LongHaulPaul) to his bike riders

August 31, 2018

Hello and thank you for registering for the 2018 MS5000 Motorcycle fundraising challenge.

Fundraising is off to a good start, we have over $2000 raised even before we start riding! Awesome.

Here is a little more about where our efforts are going and why for the first time in years I am excited about the money we are going to raise through this event.

Over the past 5 years we have raised over $100,000 for an organization that has been difficult to work with and unwilling to help promote or even mention the efforts we have done on their behalf. After losing thousands of dollars in donations two years in a row and never bothering to even credit our event, I was discouraged and had decided not to do the MS5000 this year. I began searching for a new MS charity that wanted our money and even better, would be willing to work with me in a variety of ways. At the very least, answer my emails! I spent two years researching, visiting and talking to a handful of organizations before choosing the right one.

This year we are riding and raising money for MS Views and News, an organization that delivers free unbiased educational programs and services to people living with MS and their families. I have personally spent many hours discussing my goals and ideas for MS programs and presentations with them as well have already begun to speak at events for this charity.

For the last 6 years, I have been traveling around the country as an advocate, sharing my story to patients at pharmaceutical sponsored events and I believe I have made a difference in the lives of many newly diagnosed as well as those who had given up on life, letting this disease get the better of them. I always seek out the people who look to need the most encouragement and often stay until I have answered every question they have. Knowing I made a difference, even if in just one person's day, is an incredible feeling that propels me to continue sharing my story and inspiring others to overcome their challenges as well. Helping others along their path is what drives me to continue my journey.

These pharmaceutical events I speak at usually take place in bigger cities and places easily accessible by the neurologists and drug representatives, and quite frankly where patients receive better care. Each time I visit a smaller town or area of the country where there is not an MS center or population to support such educational programs, I am stunned at the level of disability, lack of information regarding new therapies and quite frankly, a loss of hope; hope of any future worth living for. My FDA approved speech is watered down and after the lawyers and compliance agents get a hold of it, loses much of my message.

I have so much more to offer and want to do so much more. I have been struggling to find a place where I can use my real story, my humor and visuals to engage and inspire on a much different level. MS Views and News has let me create and deliver a powerful and entertaining presentation without restrictions and sees the value having me present at their events will bring to their organization. So, this is why I am excited that my efforts, and your efforts during this event will be used to make a real and measurable difference in patients lives that I will be able to see with my own eyes.

The money we are raising this year will go towards a new initiative called The Ride to Reach Rural America, where together with MS Views and News, we will be reaching people in remote and rural areas, providing unbiased and unbranded patient programs along the backroads of America, delivering education, inspiration and hope where it is truly needed most.

Thank you for taking part, riding and raising money for this cause.

Please Donate to a MS5000 Rider - https://goo.gl/c9nMpk

Paul Pelland
Longhaulpaul
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Cheers,

 Paul

Paul  Pelland
Longhaulpaul
Chasing the Cure
A Million Mile Journey for MS




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Wednesday, August 29, 2018

Having a job and staying employed is important for many MSers

   https://shift.ms/ms-and-work-series-1
Having a job and staying employed is important for many MSers 

Just like any other employee, you want a successful and long career, to be supported to perform well and have the opportunities to progress. It’s an employers responsibility to ensure you have what you need to feel valued, understood and supported.
Unfortunately, some employers aren’t equipped to support people with long term conditions, often the lack of knowledge, understanding and training is the cause. Over the past few months, we’ve been working on a number of resources that can encourage changes and provide useful resources for the community.  
The Shift.ms MS Reporters have interviewed a number of leading employment specialists about the difficulties you face in the workplace and also explored the topic of disclosing MS at work.  
Rebecca Armstrong, a HR Consultant and an MSer herself, provides expert advice on applying for a new job and disclosure.
  1. Let your experience shine through, no need to disclose during the interview.
  2. At the point of offer, make a decision about disclosing.  
  3. If no adjustments are needed, perhaps consider whether there is a need to disclose at this point.



Carla King, MSer and advocate, has some advice for those preparing for the disclosure conversation.
  1. Prepare for the conversation and pre-empt the questions that you could be asked.
  2. Write down - what are your barriers or struggles? How are they affecting the MS? What could the solution be? This could be an action you can take or your manager could take. Once recorded, prioritise what the deal breakers are and what you would be willing to adapt to. This will help the conversation.
  3. Keep it professional - no need to share info about treatment, refer to things that will only affect your working day.
  4. Pick the environment and timing well to keep the situation relaxed and calm.
All the interviews including Rebecca and Carla’s can be viewed at www.shift.ms/ms-and-work-series-1.
The second series on MS and Work coming later in the year will explore different support schemes available for MSers at work including managing symptoms, reasonable adjustments, and what to do if you’ve been treated unfairly because of your MS.
Sarah

                      
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Tuesday, August 28, 2018

MS in Children

Last updated: 18th June 2018


MS is usually thought of as an adult condition, but children and teenagers can also develop it. In fact, children as young as two years old have been diagnosed with childhood MS (also called pediatric MS).
According to the Atlas of MS, there are estimated to be around 2.3 million people with MS in the world. It’s not clear how many are under the age of 16, but up to ten per cent of people with MS experience their first symptoms before the age of 16.
Diagnosing MS in children is more challenging than in adults due to the frequency of other childhood disorders with similar symptoms and characteristics. Pediatricians may not be familiar with MS because they are not expecting to see it in children. However, as a result of increased awareness of childhood MS among neurologists and advances in technology, the number of children diagnosed with MS is steadily growing.
If your child has been diagnosed with MS, or MS has been suggested as a possible cause for your child’s symptoms, you may have lots of questions.
Childhood MS: A guide for parents is a free downloadable resource intended to provide answers to some of these questions. It should help you to understand more about the care your child should receive, and the kind of support you are entitled to in order to manage the changes MS can bring.

Download the Childhood MS Guide

Pediatric MS and other demyelinating disorders in childhood: Current understanding, diagnosis and management

The International Pediatric MS Study Group have written a series of articles, highlighting the advances, unanswered questions and new challenges in understanding, diagnosis and management. These articles have been published in a Neurology journal supplement, which you can access for free here: http://www.neurology.org/content/87/9_Supplement_2.
We have produced a short publication which summarises the key points from each of these articles, with links to the full articles. This publication is aimed at people with some prior knowledge of MS in children, but is written in plain, accessible language.
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Cognitive rehabilitation in MS

Computer-aided cognitive rehabilitation can slow down
 cognitive impairment in MS patients

Background

Cognitive impairment is characterized by changes in reasoning and thinking, and can involve difficulties in remembering, learning new things, concentrating, or making decisions that affect daily life.
About half of people with MS experience cognitive changes. These may start early, and may be independent of physical disability.
Cognitive rehabilitation has been proposed as a way to slow down cognitive impairment in MS patients, although it has produced mixed results.
Recent studies have assessed the effect of computer-based cognitive rehabilitation, and found significant improvements in several mental functions, including attention and verbal learning.
The efficacy of cognitive rehabilitation is also supported by functional magnetic resonance imaging (MRI) studies that showed improvements in neural connections in patients with MS.

Study

In a study recently published in the Journal of Neurology, Italian researchers created a computer-based cognitive rehabilitation program for cognitively impaired patients with relapsing-remitting MS.
Thirty-two patients received computer-aided cognitive rehabilitation twice a week for eight weeks, for 50 minutes each time.
The researchers found that these patients showed significant improvements in attention, processing speed, and visual and verbal memory performances.
Based on these results, the researchers propose that a more extensive computer rehabilitation program should be initiated early in the disease course when brain structural damage is not advanced, thereby allowing brain or cognitive reserve to build up that may protect people with MS from cognitive decline.

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Emotional and cognitive changes with Multiple Sclerosis (MS)

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.

Last updated: 21st August 2018      - By MS International Federation

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 liability 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.

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
Because MS can affect any part of the brain, almost any cognitive function can be impaired, and symptoms can range from having a mild impact on only one or two aspects through to more pervasive changes, which affect a person’s daily life.
Cognitive changes can have a significant impact on a person’s ability to work and fulfil family responsibilities. Family members may not realise that MS can cause cognitive problems and this misunderstanding can result in anger and confusion.
MS is a complex disease with many psychological aspects. Adjusting successfully to MS requires understanding and addressing these changes along with the physical ones. There are many resources available for education, evaluation and treatment. By using these resources to the fullest, a person with MS and their family can continue to live their day to day life.
Source


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Monday, August 27, 2018

Inflammatory Suppressor Cells, New MS Mouse Study Shows



Cannabidiol Increases Inflammatory Suppressor Cells, New MS Mouse Study Shows

Non-psychoactive cannabidiol (CBD), one of the active compounds in medical cannabis, significantly reduced clinical signs of multiple sclerosis (MS)-like disease in an experimental autoimmune encephalomyelitis mouse model. Researchers found that CBD promoted the increase of inflammatory-suppressor cells called myeloid-derived suppressor cells.
Medical cannabis contains more than 100 pharmacologically active compounds (called cannabinoids),  which have been shown to exert potent anti-inflammatory effects and to be potential therapies for a number of autoimmune diseases, including MS.
In MS, evidence supports the potential of CBD, one of the most studied cannabinoids, along with tetrahydrocannabinol (THC), to modulate spasticity, as well seizures, inflammation, pain, anxiety, and other conditions. The fact that CBD does not have the psychoactive properties (the so-called “high”) that accompany THC, makes it a more attractive therapeutic.

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Sunday, August 26, 2018

MS and new ways of regenerating our brain's insulation

New research finds that stimulating myelin production in our brains could help people living with degenerative and disabling neurological diseases like Multiple Sclerosis

By Dr Jessica Fletcher and Dr Susan Northfield, University of Melbourne

Your brain runs on electricity. And, like electrical wires, your nervous system needs insulation. These nerves are covered by an insulating sheath called myelin that is vital to the normal functioning of our nervous system.

But for those people affected by diseases like Multiple Sclerosis (MS), this insulating myelin is destroyed by the immune system – leading to significant nerve dysfunction as well as slowed or blocked nerve conduction between the brain and the rest of the body.


In MS, insulating myelin is destroyed by the immune system which leads to nerve dysfunction. Picture: Shutterstock

MS affects the lives of more than 25,000 Australians and more than two million people around the world. While most people are diagnosed between the ages of 20 and 40, according to MS Australia, the disease can also affect younger and older people. Around three times more women than men are diagnosed.

Finding new ways to regenerate myelin and prevent nerve death is key to revolutionising treatments for people with multiple sclerosis, and our research focuses on how the nervous system develops to find a new way to enhance myelin regeneration in the brain.

ENHANCING MYELIN REGENERATION

To understand some of these developments, it’s important to understand Brain-Derived Neurotrophic Factor (BDNF). BDNF is a growth factor with neuroprotective properties – this means it supports the growth and health of your brain cells.

It also promotes myelin formation during brain development, known as myelination.

In the context of myelination, BDNF acts through a partner, or receptor protein on the surface of myelin producing cells which is called TrkB. This receptor is expressed by myelin producing cells known as oligodendrocytes. By stimulating the TrkB cell on oligodendrocytes we can improve the restoration of myelin after its destruction in the brain.

READ MORE

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