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Thursday, September 1, 2016

Att: MS Patient -- Make Your Voice Heard on MS Treatments


                                                                  
  




                     Make Your Voice Heard on MS Treatments



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Mobility, Accessibility and Living with Assistive Devices for those affected by Multiple Sclerosis


                                                                  
  

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Ongoing management of symptoms caused by MS is essential for maintaining mobility, productivity and involvement. Many MS symptoms can interfere with mobility, including fatiguespasticity,dizziness and vertigopainnumbness, and problems with walkingcoordination, and vision, among others. Even depression, which is very common in MS, can interfere with a person’s ability to stay mobile and active.

Talking with the healthcare team about symptoms and the impact of those symptoms on one’s personal goals and priorities, is the starting point for staying active.

The right shoes

From prehistoric animal skins to high-tech athletic shoes, footwear has evolved over thousands of years. For many people, style is the primary consideration. People with MS may have other concerns, such as how symptoms like spasticity, numbness, impaired balance and foot drop may affect walking.Finding the right shoes can make all the difference. 

Automobile adaptations

When symptoms of MS such as fatigue, weakness, incoordination, sensory changes in feet or hands, vision problems, or cognitive changes interfere with driving safely, an occupational therapist orcertified ADED driving specialist can assess your needs and recommend adaptations and tools (.pdf), and vehicle or van modifications to help keep you driving as long as possible. Your consultation will result in a prescription for the precise equipment you need, and may result in driving lessons with the new equipment.
While used wheelchair vans, SUVs, trucks and cars are great options for some, a custom-built mobility vehicle can achieve more comprehensive or specific conversions. Consult with a mobility equipment dealer, such as the National Mobility Equipment Dealers Association (NMEDA), to determine which option is best for you.

Mobility aids

Mobility aids can help you get where you want to go while conserving energy and preventing falls. Learn how to choose the aid that is right for you and meet the rehabilitation professionals who can assess your needs and recommend the most appropriate aid(s). Mobility aids can:
  • Make shopping trips manageable and visits to a museum or zoo a pleasure
  • Make a new sport possible or reopen the door to an old favorite. People in scooters and wheelchairs bowl, fish, and play golf, tennis or basketball.
  • Enable you to go places without having to rely on others.
  • Prevent falls and show others that the problem is medical—not substance abuse.

Assistance animals

Service dogs can be trained to perform an impressive range of tasks, including:
  • guiding
  • alerting to sounds
  • opening and closing doors
  • retrieval
  • pulling wheelchairs
  • providing balance support
  • turning lights on and off and more
Here are some things you should consider if you're thinking about getting a service dog:
  • Do you have the funds, time, and support to meet your service dog’s needs?
  • Are you able to exercise a dog and clean up after him or her? Do you have a reliable person willing to do this when you can’t—come rain, snow, sleet, hail, summer heat, or an MS flare?
  • Do you have or can you raise funds to pay for regular veterinary care, as well as food, accessories, and training aids? If funds are tight, have you researched potential financial resources? (Help may be available.)
  • Will you be consistent in working with your service dog and use the training techniques you will learn? Can you be patient if a training routine is not going well, and figure out ways to turn it around?
  • Are you willing to make a ten-year, or more, commitment to a dog?
To help you think about whether a service dog may help you improve your mobility, contact  Assistance Dogs International, Paws with a CauseAssistance Dog United Campaign, Canine Partners for Life, or Pet Partners.

Resources

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The Difference a Balance Dog Makes for MS


                                                                  
  

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By Julie Stachowiak, PhD
Updated July 13, 2016


Service dogs are specially-trained dogs that assist people living with disabilities in a multitude of ways. You might be most familiar with guide dogs that help people with vision difficulties navigate the world and assist people with hearing loss by indicating when a phone is ringing or a baby is crying. But those with vision or hearing loss aren't the only people who can benefit from having a trained service dog.

Guide Dog  Many people living with multiple sclerosis (MS) have difficulty moving from place to place due to numbness in their legs, which results in feelings of instability and a lack of balance. MS-related fatigue can also cause people to fall, feel unbalanced, or have difficulty walking. Canes and other aids can help, but balance dogs are becoming increasingly common among people diagnosed with MS.

They help people sit down, stand up, and get in and out of bed, in addition to providing increased mobility when performing everyday activities. According to the Americans with Disabilities Act, service dogs have every right to be anywhere that you have a right to be.


Multiple Sclerosis Balance Dogs

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Adapting to MS Parenting Challenges


                                                                  
  

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By Shelley Peterman Schwarz
 
I was so naive and unprepared when I became a parent. I was completely overwhelmed by the 24/7 responsibility. And I certainly didn’t expect to be diagnosed with multiple sclerosis! Every day, it seemed I lost physical abilities, and I didn’t have the energy or stamina of a normal 32-year-old mother. It was difficult and depressing for me, especially when I saw what other mothers were doing.

Our first hurdle was, “what do we tell the children?” Even though they were so young, they knew that something bad had happened. Mom cried a lot; Dad, Grandma, and Grandpa talked in hushed tones. Outgoing little Jamie didn’t want me to leave her sight. Happy-go-lucky Andrew began sucking his thumb – something he had stopped doing months before.

One night, my husband, Dave, and I gathered our courage and told the kids that Mommy had an illness the doctors didn’t know much about and there was no medicine to make Mommy better.

Jamie’s first question was, “Mommy, are you going to die?”

At just five, she could ask piercing, perceptive questions. That night I cried myself to sleep. My MS had robbed my children of the carefree childhood they deserved. I vowed to try to keep our world as normal as possible.

As my disability increased, we tried to explain things in terms they could understand. Mommy’s hands were weak and they would have to be patient because it would take me longer to comb their hair, button their clothes and make their lunches.


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Wednesday, August 31, 2016

Welcome or Not, FDA Focuses on Stem Cell Treatments


                                                                  
  

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News that the U.S. Food and Drug Administration (FDA) is to hold a public hearing next month to consider greater oversight of stem cell clinics operating in the country is as welcome as it is late. I say “late” because, while the regulators have been twiddling their fingers, the stem cell business has been booming across America.
The hearing, to gain public comments prior to preparations of draft guidelines, is being held on Sept. 12 and 13 at the campus of National Institutes of Health (NIH) in Bethesda, Maryland, just northwest of Washington, D.C. (The public is invited to follow the hearing live via a webcast on the FDA webpage announcing it.)
There are now hundreds of clinics, some say as many as 600, that are promoting stem cell therapies to combat everything from aging to autism, Alzheimer’s disease to, even, multiple sclerosis. However, no one should be confused — these clinics are NOT offering HSCT. What they are peddling is some form of stem cell treatment without chemotherapy.
Real HSCT treatment that has shown remarkable success in treating multiple sclerosis includes chemotherapy. This is not just desirable; it is crucial. It is the chemo drugs that do the most important work of suppressing a patient’s immune system before the stem cells help it to grow again, renewed or ‘rebooted’.
Proper HSCT is available at many overseas locations but, so far, there is only one place in the U.S.: Chicago’s Northwestern University, where Dr. Richard Burt has led trials.
Growth in the number of other clinics offering their own forms of stem cell therapies has alarmed many medical professionals and regulators, and this led to the two days of hearings next month. These will help the FDA to decide whether clinics offering stem cell treatments should be more closely regulated.
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MAKE your Voice HEARD on MS Treatments


                                                                  
  

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The Institute for Clinical and Economic Review (ICER) is currently conducting a review of disease-modifying therapies (Treatments) for relapsing-remitting and primary progressive forms of multiple sclerosis. Insurers may use ICER recommendations to develop or change their approved drug lists, which could potentially improve or restrict access to Multiple Sclerosis medications for people living with MS.

To ensure that people living with MS have direct input into their analysis of the use and effectiveness of disease-modifying therapies, the MS Coalition contacted ICER. As you may know, MS Views and News, is an Associate Member of the MS Coalition.

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Tuesday, August 30, 2016

Have you heard about LiftMS ?


                                                                  
  

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Have you heard about this new blog?   LiftMS.com 
http://www.liftms.com/ 


 LiftMS.com offers support and resources to help provide that lift you might need. 
Sign up for updates here: www.liftms.com/register








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Failure is an Option - an MS Patient, Blogger's story


                                                                  
  

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Dave's ActiveMSers Blog


Posted: 30 Aug 2016 03:15 PM PDT
I stared at the kayak. “Oh, hell no,” my brain was telling me. I wasn’t worried about the paddling part—my arms can crank. But the getting in part, the staying upright part, the getting out part, and the whole not drowning part were an issue. Laura wanted to go, and suggested a tandem kayak would alleviate many of my concerns. My brain was skeptical. My brain, wisely, wanted to bail. And then, on the edge of a tiny lake in Colorado Springs six hours from home, my celebrity doomed me.

“Hey, don’t you do a blog?!”

Egad. Mr. ActiveMSer has been spotted contemplating waffling on well, being active.
“I love ActiveMSers, it’s so inspiring to see you getting out and doing what you can. It helped motivate me to climb a fourteener. You are awesome! I’m Meg, a longtime member with multiple sclerosis. It’s so great to meet you in person.”

Gulp. Totally busted. There was no way I could let Meg down now.

Okay, I reasoned with my brain, if Meg can do a fourteener (she even got a tattoo to commemorate the experience), I can attempt to kayak for a measly 15 minutes. So I went through my basic pre-kayak checklist: life jacket—check, paddle—check, behaving bladder—check (as much as one can check such things).
As I expected, getting into the kayak was challenging. But with a little help, I was off and paddling! That is, until I wasn’t. While my arms are great, my core (despite lots of training) puts the eh in meh. With my legs in front of me and no back support in this particular kayak, after a half dozen strokes I was admiring the puffy clouds directly above me in the sky. I discovered kayaking while lying on one’s back is rather impossible.

For the rest of our excursion, which was nearly a half hour, Laura did 98 percent of the work while I grabbed my legs to stay upright. If we got near shore, I’d paddle for a few strokes in the event a swarm of paparazzi (or just Meg) was going to capture my lameness for the tabloids. Oh, I didn’t actually care. Why?

See, earlier that day I played wheelchair tennis, a sport I feared would depress me, and just remind me of how I used to love to play the game and how I now had no business setting foot (or wheels as the case may be) on the court. Sure, I was terrible, but it was fantastic fun. Laura had to drag me off the court after nearly two hours. We even played doubles!

The point is, there likely will be times with multiple sclerosis that you fail trying to do something that the old you could do effortlessly. It’s important to realize that that’s okay. Heck, when you have MS, failure absolutely is an option, and an important one. Because if you never try, if you never experiment, if you never leave your comfort zone, then this disease wins. Screw* that.

While I enjoyed getting out on the lake on a beautiful day, I’ll try to kayak again with proper back support (and ideally an adaptive instructor). And I’ll get back out on the tennis court with a proper wheelchair designed for swinging the racquet and chasing balls. As for when motivation wanes and doubt creeps in, I discovered that you need to find inspiration wherever and however you can. This day it was a touch of serendipity, and her name was Meg.

*Note: my editor, aka wife, used this word to replace the more descriptive and vulgar word that I had originally chosen. Children, she reasoned, might read this. Meanwhile, I’m thinking kids have better things to do than to read blogs that contain words that rhyme with duck. While I always defer to her (always) better judgement, feel free to replace said word in your head for dramatic effect.

More found here: Dave's ActiveMSers Blog.







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Neurologists Report Increasing Payer (Insurer) Pressure For Disease-Modifying Therapies, Resulting In Suboptimal Treatment For Some Patients With Multiple Sclerosis


                                                                  
  

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CAMBRIDGE, Mass., Aug. 1, 2016 /PRNewswire/ -- In the Q2 update of RealTime Dynamix™: Multiple Sclerosis, roughly one-quarter of the respondents reported increased payer restrictions for Teva's Copaxone while restrictions have eased somewhat for Sandoz's Glatopa, Novartis' Extavia and Biogen's Tecfidera. While half of the neurologists agreed that payers are becoming more aggressive with MS patient management, only one-quarter stated that payer policies are strongly influencing their use of specific DMT brands.

While increased use of oral DMTs, particularly as first-line options, continues to be cited as one of the major practice pattern shifts, another noteworthy shift emerged this quarter related to increased patient monitoring. More wide-spread use of the JC virus assay and associated titers is occurring for patients considered candidates for Biogen's Tysabri and Tecfidera and Novartis' Gilenya. In addition, more attention is being placed on monitoring lymphocyte counts for patients on Tecfidera. While this does not appear to be translating into diminishing share for these brands, a heightened awareness about potential safety issues could temper enthusiasm for expanded use. In fact, share projections for Tecfidera and Tysabri are flat while neurologists anticipate a significant increase for Gilenya in the next three months.


Only 14% of the survey respondents had registered in the Zinbryta REMS program at the time of this survey, but roughly half predict that they will have some patients on the new DMT within the next six months. The outlook is rosier for Roche's Ocrevus (Ocrelizumab) which could be available by year end. Many neurologists anticipate using Ocrevus as soon as it becomes available with 40% of the respondents anticipating a decrease in their use of Tysabri once Ocrevus hits the market.

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Monday, August 29, 2016

RSVP to attend -- 2016 - Annual MS Symposium - The Neurological Aspects of Multiple Sclerosis and Beyond


                                                        Updated Neurology Information
                                                      Disability Law,  Proper Stretching                                                                                                                            Bladder & Bowel Care


The oncology molecule’s launch offers a new hope for Multiple Sclerosis patients


                                                                  
  














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In May 2016, the Food and Drug Administration (FDA) gave a green signal to Zinbryta—AbbVie Inc.’s (NYSE:ABBV) and Biogen’s mutually-developed molecule molecule—to manage and treat adult patients who suffer from different relapsing ailments of Multiple Sclerosis (MS). In July 2016, the European Commission (EC) approved it for marketing and commercialization in the European countries. The drug is now available in the US therapeutic market.
The regulatory agencies have given the drug an approval based on the scientific data, which showed that it has met primary endpoints in relation to the efficacy and safety profile in two clinical trials. These were the SELECT study and DECIDE study, which aimed to treat MS.
In this regard, AbbVie chief scientific officer and EVP of research and development (R&D) Michael Severino commented: “With the approval of ZINBRYTA in the European Union, we are providing a much-needed treatment option for people living with MS. […] This is an important part of AbbVie’s ongoing commitment to advancing neuroscience research specifically in the area of MS.





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Sunday, August 28, 2016

Former Vail doctor accused of falsely diagnosing and treating patients for MS; practicing in Florida


                                                                  
  

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Dr. Gary M. Weiss continues to practice in Florida even after surrendering his Colorado license



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