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Saturday, January 7, 2017

Basic MS Explorer is Now Available in IOS & Android Formats


                                                                  
  

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Basic MS Explorer wants you to know:

Finally! A way for Multiple Sclerosis patients to manage their disease easily through their smart-phones or tablets. The Basic MS Explorer application is now available on the Google Play Store, as well as the apple store.  Patients with smart phones using either of the two formats will be able to download this app immediately.

Many patients have issues taking their meds on time or missing them altogether. With this application the user is able to enter all of their medications, (whether it be a steroid, antidepressant or bladder control) frequency of use, preferred route and personalize a notification as a reminder. As of now this is the only app that will take care of all the patient’s meds in one place. The patient will tell the app if they took their dose and if they didn’t, the app will tell them how to handle a missed dose.

When the user registers with this free app, they will indicate to the application when they were diagnosed and what type of MS they have. They be served a checklist of symptoms that they could check-off each day during an extremely short and easy “daily-self assessment”. Provided the patient consistently updates the app, they will be able to print their “quick-sheet” and hand it to their doctor at the start of their bi-annual visit. This quick-sheet will show everything as far as symptoms, falls, inconsistency in taking medications and anything else that their doctor would need to see.
However, this application is not just a tool to input information. Through the app, the user will have access to all of the information from the Basic MS Explorer website.

Meaning there would be an encyclopedia of MS drugs at their fingertips, as well as:
·         A multiple sclerosis blog that is updated daily with breaking news and helpful tips
·         Nearby advocacy/support groups
·         Upcoming patient-based conferences and events
·         A comprehensive list of assistive devices
·         Any new research articles/updates
·         Drugs coming down the pipeline
·         A video/audio library featuring MS patients and respected thought leaders

Also available to the user would be the 5 easy access icons. In the event of emergency the user would be able to simply swipe from the left on all screens to show the icons and press the corresponding icon to call 911. They would also be able to program 2 emergency contact numbers into the app under “friend 1” and “friend 2” and press their respective icons to immediately call them if need be. This app will be voice activated too, so pressing that icon allows the user to say (or type) a search term and be brought to that screen on the app. 
The 5th icon would be to record a voice memo, something very useful for patients who experience memory issues.

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Friday, January 6, 2017

Homemade Adaptive Gimplements and Gizmos


                                                                  
  

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New wheelchair users quickly discover the world is an inconvenient place. Counters are too high, things are constantly out of reach, everything, it seems, is a struggle. Most of us find work-arounds or create tools to deal with these obstacles to living the lives we want. Some of these “gimplements” are as crude as my piece of .75-inch diameter PVC pipe with a wine cork and a clothes hook in one end to flip hard-to-reach switches or to pull things closer. Others are more elaborate and complicated.

Here is a simple gizmo to get your adaptive juices flowing:

Skip Lonie is a carpenter. After a spinal tumor turned him into a T12 para two years ago, a big frustration for him was finding a way to carry his tools around conveniently without having them fall off his lap. A conventional carpenter’s belt wouldn’t work and besides, how could he carry a power drill, a circular saw or a sander and wheel at the same time? His solution is a Container Store metal basket hose-clamped to PVC pipe that slides over his arm rests. The basket stays stable on his lap while he wheels around his shop or Home Depot, the local Safeway or Walgreens.



As with most do it yourself projects, Lonie needed to change, modify and tweak the design a bit along the way. He found his original design too noisy and prone to break down, but after a few modifications he says it worked like a charm.

The Gimp MacGyver

At the other end of the adaptive gizmo spectrum from Lonie you’ll find Brian Johnston — aka “Brain” to wheeler pals back in the day. He is as close to a Gimp MacGyver as I’ve ever run across. He operates with a “there must be a way” mentality that allows this C5 quad of 40-some years to not only live totally independently, but also pursue hobbies and interests that would be demanding and challenging to the most skilled and adventuresome of non-disabled handymen.
He wanted to rebuild vintage mini-bikes and lightweight Harley Davidsons, so he found a way to adapt power tools and other necessities to meet his needs and capabilities, much like he came up with novel solutions and work-arounds to the endless problems quads deal with every day. He built a business around it in the 1980s, hawking his “gimplements” via a mail order business until he began an adventure in real estate — all while finding the time and energy to own and manage an apartment building. He re-invented the business in the 2000s but stopped offering many useful items due to waning demand.
When asked about his most useful and used items, Johnston began with what he sold as “Shut the Door.” The problem, as all wheelers know, is simply shutting a door behind you — a problem especially vexing for quads with limited strength, balance, flexibility and hand dexterity.
“I tried the usual: a shoelace around the door knob, then gripping it with my teeth, but then you’ve got this ugly string on the knob that’s always breaking, so I came up with the Thighmaster,” he explains.
The Thighmaster?


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A Year in Review: All About Multiple Sclerosis


                                                                  
  

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Between daily news and conferences around the United States and Europe, it was a busy year in multiple sclerosis research.
From a celebrity diagnosis to innovative potential treatments, this was quite the year in the world of multiple sclerosis (MS). The editors at MD Magazine covered the day-to-day news as well as attended various MS-focused conferences, including: - 



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“Hope is a very important word for people with MS” - Clay Walker


                                                                  
  

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“Hope is a very important word for people with MS”
-Clay Walker

A candid interview with country music performer Clay Walker and President of MS Views and News Stuart Schlossman, touching on life with MS, music and the future. 

December 12, 2016

Stuart: Clay, Is it true that it has been 20 years since your MS diagnosis?

Clay: 1996, yes this is 20 years, good gracious!

Stuart: How would you relay how this experience has been for you?

Clay: Having been diagnosed and given a horrific prognosis to be in an wheelchair in 4 years and dead in 8 was huge. Anyone who has been told that they are going to die….I’ve got a lot to be happy about!

Stuart: How do you use music to help you overcome MS and keep you on track?

Clay: I feel like I have been able to use my music, my approach to music has been scalable. I hope to bring awareness to people in an emotional way that helps them grow and brings joy to their lives. I have the same mentality with MS, how I help people live joyfully with MS.  Hope is a very big important word for people with MS who have felt that they are in the dark, but we have a lot I want to bring to light especially with RRMS, it is important that we use the tools that can stop it in its tracks. There are multiple therapies that could help. I say this with a sincere heart, getting on a therapy that works for you is the most important thing in the course of MS.  (In regards to music) The more people and strength in the music world, gives me a platform to be heard.

I think God has given me the talent and knowledge and opportunity to be able to have an open dialogue in the MS community and this is the most important thing we can do, help one another.

This is part of the learning process, but music has healing properties in my opinion. Why is it that when I am on the stage I don’t feel that pains I do when I am off stage. The doctor says it’s like a pain reducer, endorphins.

Stuart: Can you tell me about Band Against MS?

Clay: Years ago I didn’t know how this was going to go.  As my condition seemed to stabilize, I started to grow a backbone because I wanted to do something. I realized I need to get rid of the “I” because it affected more than me. I started not only to be part of the MS community, but to FIND the MS community- where are they? I feel that you cannot do the MS piece without education. The educational side is imperative if you are going to manage RRMS. We need to learn to live better with MS and give people hope starting today. The best way is to have a relationship with your MS doctor. A person who has dedicated their life to MS. They are serious academics because it (MS) is such a niche. What type of person wants to specialize in a disease that has no cure?

Giving your doctor every bit of feedback you can, using a diary, use your time with your doctor. Give them information that allows you to set up a proactive plan and allow it to evolve.
Stuart: Tell me what you foresee in the future

Clay: I would like the world to know that it is one foot in front of the other in life. 7 days a week people in Band Against MS are working and dedicated. 2017 is going to be a big year in education. Getting knowledge out there and education. I can’t wait to share the knowledge and development nationwide!

















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Wednesday, January 4, 2017

Ocrevus Seen in Phase 3 Trials to Benefit Both Primary Progressive and Relapsing MS Patients


                                                                  
  

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Recently published data from three Phase 3 trials of Ocrevus (ocrelizumab) show that the investigational drug does what no other therapy has achieved so far — working to prevent disease in both relapsing and primary progressive (PP) forms of multiple sclerosis (MS).
Publications in the New England Journal of Medicine show that all three studies reached their main goals. In the case of relapsing MS, that meant effectively lowering relapse rates, and for PPMS, slowing the progression of disability.
The two identical OPERA I and OPERA II trials (NCT01247324 and NCT01412333) in relapsing MS were covered in the article Ocrelizumab versus Interferon Beta-1a in Relapsing Multiple Sclerosis,” and the ORATORIO (NCT01194570) study in PPMS was described in the article Ocrelizumab versus Placebo in Primary Progressive Multiple Sclerosis.”
In relapsing MS, the trials showed that treatment with Ocrevus, a B-cell depleting drug, was superior to treatment with Rebif (interferon beta-1a), with a 46% and 47% relative reduction in the annualized relapse rate in the two trials. In the PPMS trial, the drug was compared to placebo.
Read complete article by clicking here




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Tinnitus and MS: An Annoying Combination


                                                                  
  

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Loss of hearing symptoms such as tinnitus are not usually attributed to multiple sclerosis, but for those with MS who do experience tinnitus, like me, they can be very annoying.
The American Tinnitus Association (ATA) describes the symptoms as: “the perception of sound when no actual external noise is present. While it is commonly referred to as ‘ringing in the ears’, tinnitus can manifest many different perceptions of sound, including buzzing, hissing, whistling, swooshing, and clicking. In some rare cases, tinnitus patients report hearing music.”
From the ATA website I have learned there are two different types:
1. Subjective Tinnitus: Head or ear noises that are heard only by the patient. Subjective tinnitus is usually caused by auditory and neurological reactions to hearing loss, but can also be caused by other issues as well. More than 99% of all tinnitus cases are of the subjective variety.
2. Objective Tinnitus: Head or ear noises that are audible to other people, as well as the patient. These sounds are usually produced by internal functions in the body’s circulatory (blood flow) and somatic (musculo-skeletal movement) systems. Objective tinnitus is very rare, representing less than 1% of total tinnitus cases.
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Tuesday, January 3, 2017

Insufficient Vitamin D Levels in Newborns Influence Multiple Sclerosis Risk


                                                                  
  

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Babies born with low levels of vitamin D may be more likely to develop multiple sclerosis (MS) later in life compared with babies born with higher levels of vitamin D.

 In a study published in Neurology, investigators used the Danish National Biobank, which stores dried blood spot samples from newborn screening tests. They identified everyone in Denmark included in the biobank, who were born since April 30, 1981, and had onset of MS by 2012. 

Blood spot samples from 521 individuals were compared with 972 individuals of the same sex and birthday who did not have MS. In the study, insufficient levels of vitamin D in newborns was defined as less than 50 nmol/L, and levels higher than or equal to 50 nmol/L were considered sufficient. 

The participants were divided into 5 groups based on their vitamin D levels, with the bottom group having levels less than 21 nmol/L, and the top group with levels higher than or equal to 49 nmol/L, according to the study. There were 136 patients with MS and 193 participants without MS in the bottom group, and 89 individuals with MS and 198 without MS in the top group. 

The results of the study showed that participants in the top group appeared to be 47% less likely to develop MS later in life than those in the bottom group. 

The authors emphasized that although these findings are enlightening, they do not prove that increasing vitamin D levels reduces the risk of MS. - 

Read complete article by clicking here




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MS Patient story - Carolina' Panther's, Bickell eyes return to ice despite MS


                                                                  
  

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Dec 30, 2016

RALEIGH, N.C. -- Bryan Bickell says he doesn't want to let multiple sclerosis end his hockey career.
The Carolina Hurricanes forward said during the first intermission of Friday night's 3-2 win over the Chicago Blackhawks that "my mindset is to get back on the ice, and I think I can do that."
The Hurricanes announced Bickell's diagnosis last month, and he has been on injured reserve since Nov. 11.
He says his treatment includes a round of medication once a month, which he began taking "a couple of weeks ago."
Friday's game held special significance for Bickell, who helped the Blackhawks win three Stanley Cups before he was traded to Carolina over the summer. Bickell, 30, had one goal in seven games with the Hurricanes but hasn't played since Oct. 30.
Source




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