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Friday, July 24, 2015

MS Exercise - Hip Flexor Stretch

Health Line
MS Exercise Challenge
Having an exercise buddy helps with motivation and support.

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Thursday, July 23, 2015

Former Dolphin Don McNeal Battling Multiple Sclerosis

July 16, 2015 - MIAMI (CBSMiami) – “I have MS, but MS doesn’t have me.”
That quote comes from former Miami Dolphin cornerback Don McNeal.
A player perhaps most remembered for a tackle he missed in Super Bowl XVII is now fighting multiple sclerosis.
The incurable disease has begun to sap his mobility.
McNeal is now forced to get around on a scooter given to him by his in-laws.  McNeal, ever the optimist, refuses to feel down about it.
“Coach Don Shula always told me no matter what, always show your class,” said McNeal. “That’s what I’m trying to do here.”
McNeal, now 57, will head back to his native Atmore, Alabama next week.
The town will host a walk and run in his honor to raise funds in the fight against MS.
McNeal, a man of deep religious faith, still spends three days a week at Dade Christian School in Miami Lakes.  He’s the former pastor of its adjoining church, and his wife Rhonda serves as the school’s admissions officer.
“He has such a good spirit,” said McNeal’s wife Rhonda. “He never complains, and even picks me up when I have a bad day. His positive attitude is why everyone still wants him around here.”
McNeal believes repeated NFL concussions brought on his ailment. He is among a slew of former players suing the league for damages.
McNeal wants empathy, not sympathy.
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CME: The Science of MS Management: Effects of Aging on the Disease Course and Management of MS

A major benefit of disease-modifying treatment, earlier diagnosis, and better comprehensive care in multiple sclerosis (MS) is the ability of many patients to live fuller lives. This has resulted in greater numbers of older individuals living with MS than previously. Although MS is often viewed as a disease of young adults, there is a growing population of patients entering middle or older age, and some whom were initially diagnosed at older ages. While caring for older patients can present unique treatment challenges, today there is greater emphasis on wellness, rehabilitation, and maximizing quality of life for this patient population.
Upon completion of this educational activity, the participant should be able to:
  • Describe the effects of aging on neurodegeneration and neuroplasticity in MS
  • Discuss how age-related hormonal changes affect course of disease in MS
  • RDetermine comprehensive management approaches for older individuals with MS
Click here to access this CME activity: http://cmscscholar.org/

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Continueing Education Ops: Tackling Hot Topics in MS: Guidance from the Experts A Multidisciplinary Panel Discussion

An educational collaboration sponsored by the Academy for Continued Healthcare Learning (ACHL), Consortium of Multiple Sclerosis Centers (CMSC) and Nurse Practitioner Alternatives (NPA)

The first in a series of live regional meetings will take place on August 15, 2015 in La Vista, Nebraska featuring Scott Newsome, DO, of Johns Hopkins Hospital, Baltimore, Maryland, and Mary Filipi, PhD, RN, FNP-C, MSCS, of the University of Nebraska Medical Center Multiple Sclerosis Center, Omaha, Nebraska.

A faculty-led discussion will draw upon the needs and concerns of attendees by asking them to submit case studies they have encountered in their practice. Discussions of case studies, research, and the MS Coalition 2014 consensus paper provide a platform for brainstorming clinically relevant strategies for clinicians to use in order to maximize patient outcomes and given the current practice environment.

Click here for more information and to register for this exciting activity: 

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Health Line
MS Exercise Challenge
Take as many breaks as you need while exercising. You will see better improvements over a longer period of time if you pace your workout.

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Multiple Sclerosis Water Therapy

Exercise can be a real challenge for some people with multiple sclerosis (MS). Common symptoms like weakness, numbness, and balance issues can make physical activity difficult, and maybe a little intimidating. But exercise is as important for people with MS as it is for everyone else. A good exercise routine can even ease symptoms.
Many people with MS find that water therapy is the easiest and most rewarding way to stay physically active. The buoyancy of water helps to support weak limbs, making them feel lighter. Water also provides resistance, which helps strengthen muscles. People with MS may find it easier to stand in the water than on dry land, and there’s a lower risk of injury due to a fall.

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NHS Wales Approves Biogen’s Plegridy for Relapsing Remitting MS

Relapsing remitting multiple sclerosis (RRMS) treatment Plegridy (peg interferon beta-1a) by Biogen Idec, has just received Welsh NHS approval, which should make it available to patients by late October 2015. The decision follows NHS Scotland’s approval earlier this year, however, the biweekly interferon beta shot has yet to be made available in England’s NICE healthcare system. Plegridy was approved across […]

Read on »

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MS: The Words You Should Know

Written by the Healthline Editorial Team 

Being diagnosed with MS is hard enough—but learning a whole new vocabulary to understand it can be even more overwhelming. Don't worry: we're here to help. Hover over the words in the heart to define MS symptoms and decode lingo patients sometimes use to describe their symptoms. Now you're one step closer to getting a better grasp on your MS.

Click here  to click on their heart

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Boca Raton Regional Hospital Kicks Off Partnership with Shepherd Center


Boca Raton Regional Hospital and Shepherd Center announced today a new partnership aimed at attaining the best possible outcomes for people in the South Florida area who have complex neurological conditions.
The partnership is a new research-based and training affiliation, making Boca Raton Regional Hospital (BRRH) the first healthcare facility in Florida to become an affiliate of the Shepherd Center Care Network. The partnership also provides assistance with helping patients locate rehabilitation equipment in their area, as well as educational materials for patients and families during care transitions, such as returning to their communities.
“Our affiliation with Shepherd Center will ensure our patients with neurological injuries or illnesses have access to the expertise at Shepherd, one of the top facilities in the nation for medical treatment, research and rehabilitation for spinal cord injury, brain injury and other complex neurological conditions,” said Jerry Fedele, president and CEO of BRRH. “It will most certainly compliment the outstanding capabilities we have at our newMarcus Neuroscience Institute.”
Shepherd Center will support clinical and rehabilitation staff at BRRH by providing on-site and distance learning educational sessions covering complex neurologic diagnoses and collaborate on opportunities for discussion on standards of care.

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Wednesday, July 22, 2015

M.A.D. about MS – Stuart Schlossman - a personal interest story written By Laura Kolaczkowski

By Laura Kolaczkowski—July 21, 2015

Stuart’s Support Mission

Headshot of Stuart_smallStuart Schlossman is the founder and President of MS Views and News, a clearinghouse for multiple sclerosis information and programs. His website is jammed full of links and videos, including many of the blogs you have seen here on MultipleSclerosis.net. Anyone who has been in Stuart’s presence knows it’s hard to get him to stop and do just one thing, so it was my good fortune he took a lengthy pause in his day to talk with me about his advocacy work for the MS community. I wanted to know more on why he is M.A.D. about MS. [Image: Stuart Schlossman, MS Views and News]

Can you tell me some about your history with MS and what makes you work so hard for MS Views and News?
Stuart: In 1980 I moved from New York to Miami for the family business and began an export business to Latin America for industrial sewing machine supplies. I was doing a lot of travel and found my trips were shorter and shorter due to my not feeling well. I thought it was too much travel. Or maybe drinking too much bad water, or atmospheric conditions or something else. I even brought my own water and food with me on my trips because I was sure something was poisoning me.
How did you find out you have MS?
Stuart: I was in South America and I came back, returning sooner than planned because the right side of my body was not working. My primary doctor said – Stuart, the month of December is a slow month, take off some time and see what that does. I wasn’t interested in waiting and I contacted the local hospital’s chief neurologist. Right away he had something in mind. The MRI results came back with results of an illness I knew nothing about – Multiple Sclerosis.
What happened next?
Stuart: I asked what are we going to do? His answer was we were going to do nothing. I said nothing? He said the medicines for MS have major side effects and convinced me that I didn’t want to do that – he thought I needed to be using a walker or wheelchair and be worse before starting a medication. But I didn’t want to get worse. I got on the phone with the MS Foundation and asked for referrals- I saw another doctor and after four hours of testing, he gave me a box of medication, told me I had MS and I needed to take it to not get worse. That’s what I wanted to hear. I wanted to know I had a chance to not get worse.
Stuart went on to explain the number of disease modifying drugs he has tried, including combinations of two injections. After having reactions and then an insurance change with coverage, he had a major reaction to one of the drugs.
Stuart: I took a medication vacation and I had a major exacerbation. I got back on medication too late. I refused steroids and I shouldn’t have. The remaining option was Tysabri but my doctor didn’t like it and refused to put me on it. A few months later he retired and the new doctor put me on Tysabri. Over five years ago I went on Tysabri and I became a poster child for the drug manufacturer and a patient advocate spokesperson – it enabled me to do things and learn to write grants and create these educational programs. Without this drug I was barely walking, I was barely thinking. But that’s what’s good for me – it doesn’t work for everybody and I would never want to say that is the right way to go for everyone.
So you’re saying that while you were a patient advocate for Tysabri you were learning new skills and making important contacts?
Stuart: Yes, I had to tell you my history so you understand how I got to here. I started writing Stu’s Views and MS News shortly after my diagnosis. Then in 2008, I incorporated MS Views and News, and in 2009 we were recognized as a non-profit organization.
Why do you dedicate so much of your time to MS Views and News?
Stuart: I like to volunteer – I did a tremendous amount of work with National MS Society and chaired 5 walk sites in South Florida, some years I chaired two. Not only did I do the walks, I also worked with them on an MS Health Expo, which is similar to what we do now. When I wanted to go further and provide education programs, I was told no. Back then, some pharmaceutical companies did their own programs, but not like they do now.
If the pharmaceutical companies are doing their own programs, what makes the ones from MS Views and News different?
Stuart: We do multiple speaker programs – and it provides a complete learning experience. There is a need to provide a program that covers A to Z of multiple sclerosis and does not highlight a particular drug. We select topics that the programs focus on. Our typical program is 2.5 hours and we provide a tremendous amount of information. When you get out of the big cities you find there is a great need for people to learn more. Some people don’t know about prescription cost assistance. Some people don’t even know there areoral MS drugs available now.
You began in Florida but now you are holding programs in a lot of different places.
Stuart: As of this month we have held programs in 8 different states and our newsletter has subscribers from over 90 different countries.
Can you talk a bit about what someone might expect from a MS Views and News program?
Stuart: We try to get different doctors and nurses to speak at our programs. I give them the topic for the program and they speak about those topics. It might be on the current medication landscape, invisible symptoms or ways to remain compliant with treatment. We might also talk about managing symptoms of MS. We never present about just one specific drug. If you can’t attend a program in person, you can sometimes watch this program online at MS Views and News learning channel on YouTube as we often video-record our programs but not all of our events. We video record over 90% of what we do at the programs. Even if you were there in person, you can watch it again in case you forgot something. It’s also a good way to share information with family and friends.
How would someone like me go about getting one of your programs in my area?
Stuart: People can contact us through MS Views and News to ask about programs in their area or to propose a program. We plan our programs about six months in advance, because we have to find a place to host it and the dollars to support it. Pharmaceutical companies help with the costs because they really want people to learn more about MS. We would start with the topics and work from there to build the program for the area.  We have very good turnouts.
(You can check the list of programs currently scheduled on the home page of MS Views and News.)
You are obviously MAD about MS – what is it that pushes you to Make A Difference?
Stuart: We are a true patient advocacy organization. Of the ten people on our board, 8 of them have MS. We each understand and know what the MS patient might want. We are in tune because we also live with MS.
But what is it that keeps Stuart Schlossman going?
Stuart: Once upon a time, I was a salesperson. Now I am happy to feel like an educator and more delighted to know that there is a person like me (and yes there are many others too), who want to help people to learn and not disappear simply because they were diagnosed with an illness. People need not become invisible, if they can learn what can or might, affect them. Doing this is my therapy – I’m not sitting on my a$$ wondering how my MS is going to get and what will happen to me next – I don’t have time for that. I am too busy thinking about what others with MS might need. Many people might be diagnosed and become couch potatoes, just waiting for the worst to happen, but that’s not how I want to be. Mainly I want to be able to give support especially to people who are newly diagnosed – what I was not able to get for myself when I was first diagnosed. I want to be able to provide for others.
Thanks, Stuart, for all you do to support people with MS.

M.A.D. about MS is our series on people in the community Making A Difference.
Profile photo of Laura Kolaczkowski
Laura is active in the national and local MS community, facilitating patient programs including MS research and an MS Aquatics program. She is also a presence on the internet at MS patient sites and maintains her blog at InsideMyStory.com. Laura has a particular research interest in the use of internet information by people with MS and how that knowledge is shared in the patient-doctor relationship.

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Side Step Squat - MS Exercise from Healthline

Health Line
MS Exercise Challenge
Exercise may slow the progression of MS symptoms.

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Tuesday, July 21, 2015

Teva Pharmaceuticals Thinks It’s High Time for Medical Marijuana

Cannabis sativa

Cannabis sativa 
Photo Credit: James St. John / https://www.flickr.com/photos/jsjgeology/
(JNi.media) Israeli Pharmaceutical company Teva appears to be moving into the medical marijuana market, and a pending acquisition could partially relieve the pain of its top drug, Copaxone, going off patent.
Teva, according to a report by The Marker, has made an offer for One World Cannabis (OWC) to purchase the rights to the company’s patents. One World is developing treatments using the compound in cannabis to treat chronic pain, multiple myeloma and other conditions.
OWC recently reported a study by the Sheba Medical Center that showed a 60% reduction of malignant multiple myeloma cells within 24 hours of treatment using the cannabis plant’s active ingredients. OWC is still in the early stages of developing a drug, but the company expects the resultant treatment to be licensed and available by prescription to those patients with myeloma entitled to cannabis-based treatments.
OWC has hired Dr. Yehuda Baruch, former head of Israel’s Ministry of Health’s Cannabis Unit as Director of Research.

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