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Tuesday, November 14, 2017

A MS Patient's story: How I'm Living Well With MS, a Decade After My Diagnosis

I wanted to help myself win against MS, but I’m so glad I didn’t stop there.

     Kendra and David Lyons pose at their fitness and wellness center in Murrieta, California.
              Robert Randall

It’s been more than 11 years now since my diagnosis with multiple sclerosis (MS), and nearly 10 years since I stepped back into the gym on my mission to beat MS through bodybuilding and fitness.

So far, it’s been a remarkable ride, with highlights ranging from competing in a bodybuilding competition in 2009, to starting the MS Fitness Challenge (MSFC) charity in 2012 (in partnership with my wife, Kendra) and receiving the Health Advocate Lifetime Achievement Award from Arnold Schwarzenegger in 2015.

MS Fitness Challenge Reaches Across the Globe

I am particularly excited to see how far the MS Fitness Challenge — a charitable program created to educate people with multiple sclerosis on fitnessnutrition, and maintaining a positive mindset — has expanded since Kendra and I founded it.

I am now working with and helping people with MS as far away from my base in California as South Africa and Switzerland, designing personal fitness programs, motivating people to fight MS through changing their lifestyle, and supporting them in their efforts to conquer this disease.

At the same time, I am waging my own war with MS on my preferred battlefield — the gym — and training for an award I will be receiving from the International Bodybuilding & Fitness Federation as I head toward my 60th birthday in 2018.
It's an honor and a privilege to serve as an encouragement to so many people with MS worldwide and to be acknowledged for my accomplishments on this journey with and for MS.

I never look at this MS voyage as one I am on alone or that is about me. The thousands of amazing and courageous people with MS I have met along the way have made this a “family” effort to positively impact lives. I am humbled, I am grateful, and I am blessed beyond belief to have you all in my life. Sharing my life, my triumphs, and my struggles with you has had such a positive impact on me and continues to do so. It has inspired me to continue to create more ways to connect with and be of service to the MS community, as well as driven me to keep setting new goals in the gym.

MS Symptoms Continue to Pose Their Own Challenges

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Thanks to Caregivers Who Share Our MS Load

Nov 14, 2017

The MS load we carry is heavy. Some of us, unfortunately, must carry it alone. But many of us are fortunate to have someone with whom we can share the weight.
It’s National Family Caregivers Month and a new survey shows just how heavy that load can be. Caregivers, it will come as no surprise, are carrying their own problems and needs.

  • Nearly half (49%) of unpaid caregivers surveyed have feelings of depression.
  • Nearly half (45%) of unpaid caregivers surveyed feel that their physical health has suffered as a result of their caregiver duties.
  • Nearly half (45%) of unpaid caregivers surveyed often don’t have time to book or attend medical appointments for themselves.
  • 41% of female unpaid caregivers report that being a caregiver has put pressure on their financial situation, as compared to 28% of male caregivers.
  • Almost half (47%) of female unpaid caregivers do not feel supported at all by the local community, and a third (33%) of unpaid caregivers do not feel supported at all by their local health system. Just 40% of unpaid caregivers feel supported by their employer in their role as a caregiver.

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Sunday, November 12, 2017

Updated Clinical Trials @ Sunrise Neurology - in Sunrise, Florida

               Click banner to access Infinity Clinical Research Website


Friday, November 10, 2017

MS Teamworks – Voices from the MS Community

MS Teamworks – Voices from the MS Community

Personal and Candid Stories that Provide Hope and Insight for those Living with MS

(Hackensack, NJ, October 2017)—A new online collection of powerful multiple sclerosis (MS) stories has been launched by the Consortium of Multiple Sclerosis Centers (CMSC) and Catamount Medical Education.  MS Teamworks is a portal featuring 20 informal talks in which patients, clinicians, and care partners share their MS stories.

The unique format and innovative content of these talks reflects the public’s increasing need for new, more accessible information on a chronic neurological disorder that affects more than 2.3 million people worldwide.  More than 200 new cases of MS are diagnosed in the United States each week.

The MS Teamworks talks are free and accessible to the public.  Additional videos will be added to the website as they are produced.  MS Teamworks includes candid patients accounts from varying genders and demographic perspectives of MS patients including topics such as:

“The Beginning Of My MS Journey”
“I Wish My Healthcare Professional Knew”
“How I Manage My MS”
“I Wish I Knew”
“It Takes A Team”
This series of frank patient talks highlight the diagnostic experience, navigation of multiple healthcare providers and insurance companies, the importance of being your own healthcare advocate, living with and managing MS, and the often overlooked impact of MS on the patient’s family.  

The MS Teamworks clinician talks come from some of the top specialists and experts in MS care and include:
“What to Expect When You Have MS;” Dr. Robert Shin, a neurologist specializing in MS, shares how clinicians typically diagnose MS and discusses the importance of early treatment

“My Role in MS Care;” Lisa Fox, a PA, describes how her role as a primary care physician is important in MS care.

“Integrative Medicine;” Allen Bowling, MD, PhD, a neurologist, explains the benefits of using integrating conventional and alternative medicine in MS management

“MS Beyond the Physical—Effects on Mental Health;” Fred Foley, PhD, a psychologist specializing in MS, offers insight into the wide-ranging mental health challenges presented by MS.

“My Role in MS (Rehabilitation);” Patty Bobryk, MHS, PT, MSCS, ATP, a physical therapist, explains the role of each member of the rehabilitation team in the care of a MS patient.

“Debunking Myths and Misperceptions;” June Halper, MSN, APN-C, MSCN, FAN and David E. Jones, MD, converse about common myths and misperceptions about MS.

Additional clinician talks include: “Yes, you can get MS as a Child,” “A Missed Opportunity, Diet and MS,” “The Roadmap to Motherhood,” “The ABCs of MRIs,” “I am Getting Worse, What Does that Mean,” and “The MS Team.”

“The goal of MS Teamworks is to provide messages of hope to all members of the MS community and to illustrate the power of coming together as team to provide a future for those living with MS,” said June Halper, CEO, CMSC. 

MS Teamworks was made possible by a grant from EMD Serono.  To access and share the MS Teamworks video talks, visit:  Follow MS Teamworks on Instagram and Twitter: @msteamworks. 


CMSC, the Consortium of Multiple Sclerosis Centers, is the leading educational, training, and networking organization for MS healthcare professionals and researchers. The CMSC mission is to promote high quality MS care through educational programming and accreditation including live and online events, research grants, technical journals and papers, and targeted advocacy efforts. The CMSC member network includes more than 11,000 international healthcare clinicians and scientists committed to MS care as well as more than 60 Veterans Administration MS Programs and 225 MS Centers in the US, Canada, and Europe. The 32nd CMSC Annual Meeting, the largest gathering of MS professionals in North America, will take place May 30 – June 2, 2018, in Nashville, TN. For more information visit: Follow CMSC on Twitter: and Facebook: CMSCmscare.

Catamount Medical Education’s mission is to create learning experiences that maximize the impact on patient care. Education is delivered through live programs, including satellite symposia, local and regional meetings, and online events, as well as through self-directed, enduring formats such as podcasts, videos, Webinars, monographs, newsfeeds, and other enduring formats. Catamount seeks to add value to its education and ensuring a direct impact on patient care by incorporating practical tools for the clinician (e.g., exam room posters, pocket cards, patient education materials) into every educational experience. Learn more at

Media Contact:  Annie Scully, 201-310-9252,

First Patient Enrolled in Mallinckrodt Phase 4 Trial of H.P. Acthar® Gel (Repository Corticotropin Injection) for Multiple Sclerosis Relapse

-- Mallinckrodt's OPTIONS Trial to Assess Efficacy and Safety of H.P. Acthar Gel in Patients with Relapsing-Remitting Multiple Sclerosis --

STAINES-UPON-THAMES, United KingdomMay 23, 2017 /PRNewswire/ -- Mallinckrodt plc a leading global specialty pharmaceutical company, today confirmed enrollment of the first patient in the company's Phase 4 pilot study assessing the efficacy of H.P. Acthar® Gel (repository corticotropin injection) for the management of exacerbations of relapsing and remitting multiple sclerosis (RRMS) in patients whose relapse symptoms have not responded to a course of high-dose corticosteroids.
"Some MS patients may have relapse symptoms that don't resolve with steroid therapy, and in my experience, H.P. Acthar Gel may provide benefit in these cases," said Aaron Miller, M.D., a program advisor and participating site investigator from the Icahn School of Medicine at Mount Sinai in New York. "This study is an important step to confirming the appropriate patient type for this product as an approved and appropriate treatment for MS exacerbations."
H.P. Acthar Gel is U.S. Food and Drug Administration (FDA)-approved for treatment of acute exacerbations of multiple sclerosis in adults.
"Mallinckrodt is committed to providing alternative treatment options to patients who need them," said Steven Romano, M.D., Chief Scientific Officer and Executive Vice President at Mallinckrodt. "Clinical experience and current labeling support the use of Acthar to speed recovery from relapses in MS. We are pleased to enroll the first patient in the OPTIONS trial to better understand the patients who will benefit from Acthar therapy, and to support its role in the management of RRMS."
About the OPTIONS Trial
The Phase 4 clinical study is titled "A Multicenter, Randomized, Double-Blind, Placebo-Controlled Parallel Group, Pilot Study to Assess the Efficacy and Safety of H.P. Acthar Gel in Subjects With Relapsing-Remitting Multiple Sclerosis". The study will enroll patients with MS relapses of moderate severity and symptoms that have not adequately improved following a typical course of high dose IV or oral corticosteroid therapy, then randomize them to receive additional treatment with H.P. Acthar Gel or placebo in blinded fashion. 
Improvement in relapse symptoms will be assessed using several standard MS disease activity measures, including the Expanded Disability Status Scale (EDSS), MS Impact Scale (MSIS-29), and Clinical Global Impressions-Improvement Scale (CGI-I). Because this trial targets only a subset of RRMS patients experiencing relapses who have not responded acutely to corticosteroid therapy, the study may take a number of years to recruit.
Find more information about the OPTIONS trial here on the website.


Longevity Receives Grant to See if Its Nerve-cell-protecting Therapy Will Work in MS

November 9, 2017

Longevity Receives $316,000 Grant to See if Its Nerve-cell-protecting Therapy Will Work in MS

Longevity Biotech has received a $316,384 grant from the National MS Society to see if LBT-3627. the nerve cell-protecting therapy it has tested in Parkinson’s, can work in multiple sclerosis as well.
The company designed the therapy to protect and repair damaged nerve cells and restore balance to the out-of-whack immune response associated with neurodegenerative diseases such as MS.
“We are thrilled to work with the National MS Society on this project to evaluate the performance of LBT-3627 as the basis of a new therapeutic strategy addressing the debilitating unmet needs of the millions of MS patients,” Dr. Scott Shandler, Longevity’s CEO, said in a press release.

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Pediatric & Adult MS Share Many Genetic Variants


Pediatric and adult multiple sclerosis (MS) share many genetic variants suggesting similar biological processes are present, a recent study found. Major histocompatibility complex (MHC) variants beyond HLA–DRB1*15:01 and HLA–A*02 are also associated with pediatric-onset MS (POMS). Researchers comprehensively investigated the association between established MHC and non-MHC adult MS-associated variants and susceptibility to POMS. Cases with onset <18 years (n=569) and controls (n=16,251) were included. Adjusted logistic regression and meta-analyses were performed for individual risk variants and a weighted genetic risk score (wGRS) for non-MHC variants. Results were compared to adult MS cases (n= 7,588). They found:


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Smoking, Comorbid Conditions in Persons with MS


Given the associations between smoking and comorbidities in individuals with multiple sclerosis (MS), health care providers should both (1) assess smoking history and quit attempts, and (2) encourage individuals with MS who smoke to become non-smokers and refer for treatment, as indicated, according to a recent study. In order to increase the chances that individuals will be successful in becoming non-smokers, clinicians would do well to also assess and treat depression in their patients who smoke and are also depressed. Researchers used a web-based survey to obtain cross-sectional data from 335 individuals with MS. They then examined the associations between smoking variables (current use, frequency, and quit attempts) and comorbidities, and found:


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Wednesday, November 8, 2017

Useful Tips for Managing Cognitive Health With Multiple Sclerosis

October 12, 2017

According to the National Multiple Sclerosis Society, around 65 percent of people living with the disease suffer from some cognitive issues — most notably, memory, concentration and speed of processing information.

If you find that you are frequently experiencing cognitive issues and that it’s affecting your daily life, you need to speak to your health care team. They’ll assess your problems and provide you with strategies to help you better deal with the situation.

The brain is a complex organ, but the more you use it, the more you protect it from the damage that comes with aging and neuromuscular illnesses. Engaging in activities that use your brain by encouraging thinking, concentration and creativity can help to ward off some of the cognitive effects of multiple sclerosis (MS).
Cognitive health can be improved by participating in activities such as painting or drawing, jigsaw puzzles, crosswords and sudokus, learning a new language, creative writing, watching game shows, and playing card and board games, which are all enjoyable ways of passing the time while keeping your mind active.
Exercising your mind doesn’t have to be a solo affair, engaging with others in discussions, joining a book club, becoming an MS advocate or taking part in faith fellowship meetings are all excellent ways to improve cognitive health while enjoying the company of others.

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7 Simple Tips for Traveling With MS

NOVEMBER 6, 2017   Mike KnightBY MIKE KNIGHT

With the year-end holiday season hurtling towards us, now is the time many of us start planning to hit the road — making way to see family, friends and loved ones, or seeking out warm weather havens or preparing for snow-covered vacations.
Here are some basic tips for traveling with multiple sclerosis:
1. Four words to travel by: You. Cannot. Over. Prepare.
Whether you’re going over the river and through the woods or taking a slow boat to China, travel is all about changing your scenery and routine and hopefully having fun. But many of us with MS (Progressive, Class of 2013), rely on a steady routine to make sure we take our medicine or exercise and stretch or eat right or get enough rest (or all of the above). Planning and preparation can help you create a “travel routine” that meets your needs while you enjoy new experiences, too.
2. Start with a med-check. 
It’s a good idea to keep all of your medications in their original, labeled containers along with a letter from your doctor noting you have MS and the list of the medications you’ve been prescribed. Some medications have to be kept within certain temperature ranges. Injectables mean needles and may raise eyebrows, especially at airports. Time your travel around any infusions you have scheduled, and if at all possible, avoid storing your medications in checked luggage just in case it gets lost. You may also want to have your doctor’s phone number on hand, too.
3. The early bird still gets the worm. 
Like it or not, some of our most memorable travel stories are about glitches and what went wrong while traveling (think Planes, Trains and Automobiles). Something will go wrong. Create a travel plan and agenda that gives you enough time to get everywhere early. Having extra time to deal with the unexpected will reduce stress for you and those you may be traveling with. It will also give you more time to locate restrooms, catch your breath and to get ready for the next part of your trip.
4. Start packing, ASAP.
According to the National Multiple Sclerosis Society, more than half of us with MS will experience cognitive challenges, which often include memory and planning difficulties. Think about where you’re going, what you’ll be doing, what you’ll need each day, create a list, pack your bags and then, if you can, have someone review your list and what you’ve packed just to be safe. If that’s not possible, or you’d like help with a list, go here.
5. Call ahead. 
Whether traveling by plane, train, boat, as part of a bigger tour or just wander-lusting around and staying in a hotel, chances are accommodations for mobility aids, shower stools and other similar support devices may be available. These things can make traveling easier, less stressful and much more enjoyable, and are more readily available by calling before you get there.
6. Seek — and accept — help.
  1. There are a number of travel agencies that focus on traveling with a disability. Though it may be more expensive to use their services, they are in the business of making sure trips for disabled travelers go smoothly and are memorable for the right reasons. If yours is a more elaborate trip, it may well be worth the expense to use such an agency.
  2. People frequently want to help. Let them. It makes life easier and it enters you into a fairly wonderful social contract, because people get an endorphin “high” when they help other people. So letting them help helps them — which will make you feel good, too.
7. Get going! 
One of the better resources for traveling with MS put it like this: “Don’t wait. Don’t save that dream trip until you retire. Or until the kids are grown. Or until you feel better. MS is unpredictable; go now. Seize the day, savor moments, and make your vacation unforgettable for all the right reasons. Focus on the instances that make travel enjoyable, not on your disease.”

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