Multiple Sclerosis

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  • latest BNAC research

    ThisIsMS - News
    Cece
    15 May 2012 | 3:34 pm
    Chronic Cerebrospinal Venous Insufficiency (CCSVI) Statistics : 4 Replies || 97 Views Post by Cece

  • Marijuana Helps Relieve MS Pain

    Multiple Sclerosis News From Medical News Today
    16 May 2012 | 2:00 am
    Researchers from the University of California, San Diego School of Medicine have found that smoking marijuana can help relieve pain, and muscle tightness "spasticity" in individuals with multiple sclerosis (MS). The study is published in the Canadian Medical Association Journal (CMAJ)...

  • The 10 Most Common Candida-Diet Mistakes That Could Be Keeping You Sick

    The Self-Healing Coach
    Karen
    29 Jan 2012 | 6:30 pm
    As most of you may know, I eat a very specific diet based on Ann Boroch’s recovery program, as outlined in her books Healing MS and The Candida Cure. The purpose of the diet is to starve the body of Candida, fungus, parasites, viruses, and infections – all those nasty buggers that live in our guts and lead to disease. And, at the same time, to feed our bodies the high-quality foods that contain the nutrients our cells need to detoxify and function optimally. The basic rules of the diet are no sugar, no gluten, no wheat, no dairy, no soy, no alcohol, and nothing fermented. Instead,…

  • I Want It Now!

    The Self-Healing Coach
    karen
    10 May 2012 | 7:14 pm
    Veruca Salt, from the original Charlie & the Chocolate Factory Those who are certain of the outcome can afford to wait, and wait without anxiety. – A Course in Miracles I love this quote. Partly because it soothes me and reminds me to have faith in the Universe, that all my needs and true desires will be met and I will be led where I need to go. I also love this quote because the petulant child in me reads it and is instantly provoked to stomp my feet and scream “But I want it NOW!!!” a la Veruca Salt in Charlie and the Chocolate Factory. It’s good for me to…

  • www.TheMSShoppe.com

    Navigating the Journey of MS
    1 May 2012 | 2:28 pm
    Please stop by and visit our websitewww.TheMSShoppe.com Owned and operated by a person with MS We have a fun selection of tshirts, bears, cooling items and Orange Ribbon Awareness items
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    Multiple Sclerosis News From Medical News Today

  • Marijuana Helps Relieve MS Pain

    16 May 2012 | 2:00 am
    Researchers from the University of California, San Diego School of Medicine have found that smoking marijuana can help relieve pain, and muscle tightness "spasticity" in individuals with multiple sclerosis (MS). The study is published in the Canadian Medical Association Journal (CMAJ)...

  • Marijuana May Relieve Multiple Sclerosis Symptoms

    15 May 2012 | 10:00 am
    The advocates of proposition 19, the bill that tried to legalize cannabis in California, must be turning cartwheels at the news coming out of University of California, San Diego School of Medicine...

  • Some Symptoms Of Multiple Sclerosis Respond To Smoked Cannabis

    15 May 2012 | 3:00 am
    A clinical study of 30 adult patients with multiple sclerosis (MS) at the University of California, San Diego School of Medicine has shown that smoked cannabis may be an effective treatment for spasticity - a common and disabling symptom of this neurological disease...

  • FDA Issues Warning On Unproven MS Treatment

    11 May 2012 | 3:00 pm
    FDA has issued an alert to healthcare professionals and those suffering from multiple sclerosis. An avante garde procedure used to treat suffers of chronic cerebrospinal venous insufficiency (CCSVI), has been deemed unsafe, causing potential injury and even death...

  • More Than 95 Percent Of Surveyed Multiple Sclerosis Specialists Have Seen Misdiagnosed Patients In Last Year

    11 May 2012 | 3:00 am
    It is relatively common for doctors to diagnose someone with multiple sclerosis when the patient doesn't have the disease - a misdiagnosis that not only causes patients potential harm but costs the U.S. health care system untold millions of dollars a year, according to a study published online in the journal Neurology...
 
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    ScienceDaily: Multiple Sclerosis News

  • Smoked cannabis reduces some symptoms of multiple sclerosis

    14 May 2012 | 11:26 am
    A clinical study of 30 adult patients with multiple sclerosis (MS) has shown that smoked cannabis may be an effective treatment for spasticity – a common and disabling symptom of this neurological disease.

  • Glial cells supply nerve fibres with energy-rich metabolic products

    10 May 2012 | 9:00 am
    Around 100 billion neurons in the human brain enable us to think, feel and act. They transmit electrical impulses to remote parts of the brain and body via long nerve fibres known as axons. This communication requires enormous amounts of energy, which the neurons are thought to generate from sugar. Axons are closely associated with glial cells which, on the one hand, surround them with an electrically insulating myelin sheath and, on the other hand support their long-term function. Scientists have now discovered a possible mechanisms by which these glial cells in the brain can support their…

  • Misdiagnosis of multiple sclerosis is costing health system millions per year

    9 May 2012 | 5:00 pm
    It is relatively common for doctors to diagnose someone with multiple sclerosis when the patient doesn't have the disease -- a misdiagnosis that not only causes patients potential harm but costs the US health care system untold millions of dollars a year, according to a new study.

  • Halting an enzyme can slow multiple sclerosis in mice

    30 Apr 2012 | 10:49 am
    An antibody that neutralizes Kallikrein 6 is capable of staving off MS in mice, new research suggests.

  • Use of drug following first sign of possible multiple sclerosis reduces likelihood of progression to MS

    19 Apr 2012 | 3:23 pm
    People who received injections of the multiple sclerosis (MS) drug interferon beta-1a soon after their first signs of possible MS were less likely to progress to clinically definite MS than people who switched to interferon beta-1a from placebo, according to new phase three results of the three-year REFLEXION clinical trial.
 
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    MSRC Latest MS News

  • FDA issues new advice on oral MS drug Gilenya

    15 May 2012 | 3:58 am
    As their European counterparts did last month, the FDA has recommended continued use of the Gilenya multiple sclerosis pill sold by Novartis, but did say the drug should carry stronger warnings about heart risks and that some patients should undergo increased monitoring. The move was largely expected after the European Medicines Agency issued a similar alert, despite arguments by a non-profit safety watchdog that further restrictions are needed.Although cardiovascular risks were known at the time of approval two years ago, the regulatory review was undertaken in response to patient deaths,…

  • Cannabis relieves some Multiple Sclerosis symptoms - study

    15 May 2012 | 3:41 am
    Smoking marijuana can relieve muscle tightness, spasticity (contractions) and pain often experienced by those with multiple sclerosis, says research out of the University of California, San Diego School of Medicine.The findings, just published in the Canadian Medical Association Journal, included a controlled trial with 30 participants to understand whether inhaled cannabis would help complicated cases where existing pharmaceuticals are ineffective or trigger adverse side effects.MS is an unpredictable, often disabling disease of the central nervous system, which is made up of the brain and…

  • Avonex Pen(R) and Avostartgrip kit released in US for MS

    14 May 2012 | 9:08 am
    Biogen Idec announced that two new dosing innovations designed to help patients receiving once-a-week Avonex (interferon beta-1a) for relapsing forms of multiple sclerosis (MS) are now available in U.S. pharmacies:-- The new Avonex PEN (Avonex 30mcg/0.5mL solution for injection) is the first intramuscular (IM) autoinjector for chronic use, designed to enhance the self-injection process for patients receiving Avonex therapy.-- A new dose titration regimen, facilitated by the Avostartgrip titration devices, provides patients with the option to gradually increase the dose of Avonex at treatment…

  • Local care 'close to break point'

    14 May 2012 | 4:45 am
    Health services in the community are reaching breaking point in the UK, the Royal College of Nursing is claiming.The union said evidence from its members showed cuts to councils and hospitals were over-burdening nurses in the community.The research was released as nurses gather in Harrogate for their annual conference which will be addressed by the Health Secretary Andrew Lansley.Ministers have said reforms to the NHS will improve services for patients.RCN General Secretary Peter Carter said nurses were bound to "demonstrate their serious concerns" about the NHS in a Q&A session…

  • Speeding clinical trials for people with progressive MS

    11 May 2012 | 9:35 am
    Disease progression, or gradual worsening, experienced by people who have multiple sclerosis usually occurs over many years, and it is difficult to track with the standard clinical measurement scales used by doctors to assess disease activity. An international meeting was convened to determine how to improve clinical measures so that MS progression can be better tracked, especially during clinical trials of experimental therapies aimed at stopping progression. Better ways of measuring changes in disability will help to speed the development of new therapies for MS, in particular for…
 
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    MULTIPLE SCLEROSIS - Yahoo! News Search Results

  • Pot Might Help Ease Multiple Sclerosis Symptoms

    15 May 2012 | 11:40 pm
    Title: Pot Might Help Ease Multiple Sclerosis Symptoms Category: Health News Created: 5/14/2012 2:05:00 PM Last Editorial Review: 5/15/2012 12:00:00 AM

  • Smoking Cannabis Relieves Pain For Multiple Sclerosis Patients

    15 May 2012 | 12:16 pm
    Connie K. Ho for RedOrbit.com The benefits and drawbacks of cannabis have long been discussed in the medical community. And now, a new study looks at how cannabis can affect the pain of multiple sclerosis (MS) patients. Many patients of MS report to have spasticity, which is a condition that makes their muscles tight and difficult to control. There are some drugs that are available, but many of ...

  • Marijuana May Ease Multiple Sclerosis Symptoms [STUDY]

    15 May 2012 | 9:45 am
    People with multiple sclerosis have long said that smoking marijuana helps ease their painful muscle cramping. And a new clinical trial suggests they are not just blowing smoke. The study, published Monday, found that for 30 MS patients with muscle "spasticity," a few days of marijuana smoking brought some relief.

  • FDA Issues Multiple Sclerosis Drug Alert

    14 May 2012 | 10:54 pm
    MONDAY, May 14 (HealthDay News) -- The multiple sclerosis drug Gilenya (fingolimod) should not be given to patients with certain pre-existing or recent heart conditions or stroke, or those taking certain medications to correct heart rhythm problems, says a U.S. Food and Drug Administration safety announcement issued Monday.

  • Smoking pot for multiple sclerosis? Study finds it helps

    14 May 2012 | 6:09 pm
    Smoking marijuana to relieve the symptoms of multiple sclerosis is a practice with a fair number of adherents, though it has not been subject to rigorous testing. A new study finds that puffing weed does have a rapid and measurable effect on MS patients' muscle spasticity and on their perception of pain. But subjects who smoked pot were not able to walk any faster and -- surprise! -- they felt ...
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    multiple sclerosis

  • Investors pocket $761M in deal betting on Biogen's BG-12

    rmcbride
    4 May 2012 | 8:50 am
    Like a lot of biotech investors, Royalty Pharma sees blockbuster potential in Biogen Idec's ($BIIB) experimental BG-12. The New York-based buyer of royalty interests in biopharma products has laid down $761 million for an interest in potential earn-outs to former shareholders of Fumapharm. Weston MA-based Biogen, the world's largest provider of multiple sclerosis drugs, snapped up Fumapharm in 2006 to acquire BG-12, a potential blockbuster oral MS treatment. The Royalty Pharma deal gives Fumapharm's former shareholders an early reward for their interest in the hottest late-stage…

  • Sanofi's Lemtrada beats Rebif in head-to-head MS showdown

    john
    25 Apr 2012 | 8:08 am
    Sanofi has rolled out a fresh set of late-stage Lemtrada (alemtuzumab) data demonstrating its superiority to Rebif in a head-to-head matchup for multiple sclerosis. One of the key programs acquired in Sanofi's ($SNY) $20 billion Genzyme buyout, Lemtrada is increasingly looking like an odds-on winner at the FDA. And the pharma giant's success with the drug--alongside its other Phase III MS program--has inspired the pharma giant to spread its global BD net in search of other treatments. Patients taking Lemtrada in the study scored better at slowing disease progression, with a sizable…

  • Biogen Idec builds blockbuster case for new MS drug BG-12

    john
    24 Apr 2012 | 9:31 am
    Biogen Idec is backing up its blockbuster expectations for the MS drug BG-12 with a slate of efficacy and safety data gathered in a late-stage study. Readied for a scientific review, Biogen ($BIIB) execs touted the safety profile of the drug, which has proven to be Exhibit A in the biotech's case for a successful turnaround. "The safety profile has continued to hold up nicely from one study to the next," Doug Williams, Biogen's softspoken R&D chief, tells Dow Jones. Add it all up, he adds, and you'll find compelling reasons why the oral treatment--now under…

  • Pill Reduced Number of MS Lesions in Phase II Trial

    jlevin
    17 Apr 2012 | 7:24 am
    Pill Reduced Number of MS Lesions in Phase II Trial NEW ORLEANS, April 16, 2012 -- /PRNewswire-USNewswire/ -- An investigational oral drug called ONO-4641 reduced the number of lesions in people with multiple sclerosis (MS), according to the results of a phase two clinical trial to be presented as Emerging Science (formerly known as Late-Breaking Science) at the American Academy of Neurology's 64th Annual Meeting in New Orleans April 21 to April 28, 2012. For the study, 407 people between the ages of 18 and 55 with relapsing-remitting MS were randomly given placebo, 0.05 mg, 0.10 mg, or…

  • Ono's oral MS drug eliminates brain lesions in promising PhII study

    john
    17 Apr 2012 | 7:19 am
    An oral MS drug was credited with eliminating a large percentage of the brain lesions characteristic of the disease, encouraging the developers at Japan's Ono Pharmaceutical as they lay the foundation for a late-stage program. The star of the Phase II show was ONO-4641, a tablet on which Ono partnered with Merck KGaA after the German pharma company scuttled its troubled cladribine program. Once a leader in the race to develop the first oral MS drug, Merck KGaA was forced to regroup after the cladribine failure. But with Novartis' ($NVS) Gilenya now under a cloud as regulators in…
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    About.com Multiple Sclerosis

  • Confirmed. Medical Marijuana Helps MS Spasticity.

    15 May 2012 | 5:54 pm
    I'll admit, I found it a little weird to see this all over the news of the multiple sclerosis world. I kind of thought we already pretty much knew that marijuana helped with certain MS symptoms....Read Full Post

  • Have You Been Rejected as a Blood Donor Because of MS?

    30 Apr 2012 | 6:00 pm
    About 4 years ago, in 2008, I wrote this blog: Can I donate blood if I have multiple sclerosis? I felt that I was a little late in writing it, as the blood donor eligibility guidelines were updated and released a year earlier, in 2007. These guidelines eliminated MS as a factor which excluded people from being able to donate blood. To state this differently, people with MS could now donate blood. The closest that the guidelines come to discussing MS is under the heading of "Chronic Illnesses," where it is stated: "Most chronic illnesses are acceptable as long as you feel well, the…

  • Ann Romney, Multiple Sclerosis and the Presidential Campaign

    30 Apr 2012 | 5:47 pm
    I was prepared to really hate this piece about Ann Romney's multiple sclerosis (MS), preparing myself for words like "suffer" and "victim" to be sprinkled throughout the video (after all, this was on Entertainment Tonight). Sure enough, there was suspenseful music and large graphic letters filling the screen, reading "MS ATTACK," preceding the segment where Ann Romney spoke about some increased MS symptoms during the Super Tuesday primaries....Read Full Post

  • People with MS - Keep Your Intellect Sharp

    30 Apr 2012 | 12:13 pm
    I know that I am not alone when I say that MS has stolen a great deal from me. I miss lots of stuff because I am tired or am feeling "MSy" in some other way. I also know that I am among the people with MS who have cognitive dysfunction. My brain just doesn't work like it used to. This makes reading books with complicated plots or watching some movies a little more challenging....Read Full Post

  • People with MS - Don't Neglect Your Social Health!

    30 Apr 2012 | 11:37 am
    I am guilty of letting lots of time pass without reaching out and talking to friends or family members. Often, it is only when there is a compelling reason to get in touch - weddings, babies, funerals, illnesses - that I see these people whom I care for so much....Read Full Post
 
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    Blindbeard's Multiple Sclerosis Blog

  • An Ode To Sciatica

    4 May 2012 | 6:07 am
    Oh, Sciatica, I f*cking hate you. No, my most odious friend, I really f*cking hate you.You have turned my nights into a sweaty living hell. Sheets wrapped around my suffering hips, buttocks, and down my thighs.Heating pad cooking my backside until my turkey timer pops.Our last few months together have narrowed my existence into a small world of pain.Walking hunched over like a little old woman, hand tightly gripping my right buttock,And cursing my inability to find a comfortable way to have my body.I pace, I lay down, I try to find a way to sit comfortably, but there is no getting past…

  • How To Lose 200lbs Of Ugly Fat

    9 Oct 2011 | 6:45 am
    It is called Divorce. You may have heard of it. You may have already used it, successfully. You may even recommend it to friends who are wanting to lose their own mass of ugly fat. It is a painful, yet oddly freeing, diet. I am currently on this particular diet, needing to lose those last stubborn 200lbs because they are annoying, irritating, frustrating, discombobulating, infuriating, and, worst of all, tenacious. The only good thing about this mass of fat is how easily I can irritate it, having known it for 12+ years now, I know what buttons to push to make it just as frustrated as me.We…

  • What Color Is Swamp Ass?

    23 May 2011 | 7:06 am
    It is imperative that I know the answer to that burning question because I am trying to draw the Swamp Ass Swamp and can't seem to find just the right color. At first, I was drawing the swamp as the starting point for a game board to mark progress for my little sister, who has just started a vet tech program that is accelerated and promising to be an intense next 2 years. But then things took a turn that I was not interested in them taking, and now I find myself in that swamp with Sugarbowl, trying to navigate my way to the finish line. Why did I have to make such a long path to the finish?

  • Mountainous Expanse Of White Flesh

    12 Apr 2011 | 7:18 am
    Princess came in, saw the title of this post and said, "You're writing about mom?" Sharp as a tack, that one. We just got through another fabulous blow out fight in our house. The best analogy I have that sums up Sugarbowl's and my relationship is to compare it to a pressure cooker, especially the old ones that exploded so easily. My mom said that growing up they had one and my grandmother forgot to let off the steam one time and green beans got blown all over the ceiling. The pressure builds up and we have to vent at the right time or risk a big explosion. We didn't vent soon enough this…

  • Excuses, Excuses!

    17 Mar 2011 | 6:35 am
    Why has my usually overly verbose self been so silent of late? I have a whole plethora of excuses that no one will buy into, yet I offer them for your consumption anyway. Never mind the expired date on them, you won't get food poisoning, or lock jaw (keep your fingers crossed!).The main reason for my silence is because -- let me check the area to make sure no one is within reading range -- I have become something of a recluse. My family always accuses me of being one, and I always argue that I most certainly am not! Then I beef up the number of times I have left the house to make myself look…
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    Multiple Sclerosis Blog

  • You Know You’ve Had MS Too Long If…

    admin
    14 May 2012 | 3:49 pm
    Two of the symptoms that I experienced well before I was diagnosed with MS have gotten much more pronounced since my Dx. We rarely hear about them, though many of us know them all too well. I thought today might be a good time to bring them out of the shadows into the light of day. The first is Malar-Glossal Fusion (Tongue In Cheek disorder) and the other from which I suffer is Humerous Ocular Ater (Black Sense of Humor Disease). Yup, I make them up but it’s true; but the longer I live with MS the more I see the dark sense of humor in my life and my tongue is most assuredly implanted firmly…

  • FDA Issues Warning for CCSVI Treatment of MS Patients

    admin
    11 May 2012 | 4:08 pm
    We first heard of chronic cerebrospinal venous insufficiency (CCSVI) — a theoretic narrowing, or stenosis, of specific veins in the neck and chest (internal jugular and azygos veins) — in late 2009 and blogged about the topic in early 2010. I came out as a pretty harsh skeptic of the theory, but I have learned much since that time and have posted my thoughts on how to heal some of the rifts that the conversations we have led has caused. Don’t get me wrong, I am still a skeptic, but a hopeful skeptic. An FDA Safety Communication issued yesterday affirms my skepticism, but does not quash…

  • My MS Drug Decision Part III: What’s Next?

    admin
    9 May 2012 | 3:41 pm
    Today, in the conclusion of this three-part blog, I reveal the choice I have made about my next MS drug step, a decision I made with the help and support of my wife and my medical team. I once again must disclaim in this blog that I am not endorsing any of the medications used for multiple sclerosis. The choice of taking or not taking a disease modifying therapy and which of the options available to take is one to be made with great care and thought. I will, however, say that like most parts of a life with MS, the decision can only be properly made by those who are well-informed. The simple…

  • My MS Drug Decision Part Two: The Blue Juice Phase

    admin
    7 May 2012 | 2:20 pm
    Last Friday I began telling you the story about how Caryn and I came to our decision as to what’s next for multiple sclerosis meds and me. Today, I continue that thought. Before I do, however, I want to make it clear again that these decisions are very personal and not to be taken lightly. I do not share this with the intent to change anyone’s mind about their therapy or to entice you into my decision. I would also like to address a few of the comments left on last Friday’s post. I do believe that medications are part of the answer to living better lives with MS. I feel like there is…

  • My MS Drug Decision Part One: The Backstory

    admin
    4 May 2012 | 6:01 pm
    After some long hours of deep thinking and discussion, Caryn and I — along with the guidance of my MS medical team, of course — have come to a decision as to what to do next as to disease modifying medication for my multiple sclerosis. This is not a decision that we made lightly nor is it the path for everyone. I wanted to take some time to discuss my choice; not to influence anyone’s choice of med but rather to illuminate the process we went through to come to the decisions we made. Before I get into what we decided, I figured a recap of where I’ve been might be in order.
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    Judi B's blog

  • Depression and MS

    Judi B
    12 May 2012 | 2:36 pm
    I heard a brief essay on the radio about the evolutionary benefits of depression so I may not have my facts straight and I do not to whom I should attribute the study. But the gist of what I heard was very interesting. It seems there is a connection the presence of depression and the increased presence of certain cytokines. Cytokines are proteins produced by cells for intercommunication. Some cytokines help to regulate the immune system; such as responses to inflammation. How would depression be related to supporting the immune system? When we are depressed, our metabolism slows down. We tend…

  • The Wonders of Sweet Potatoes

    Judi B
    1 May 2012 | 1:30 pm
    People sometimes say they have lost too much weight on this diet and are avoiding even non-gluten grains because they seem to trigger symptoms. What to do? Eat more starchy vegetables! I often have baked thinly sliced Japanese sweet potatoes (not from Japan, grown in in the US) with a tiny bit of oil at 350 degrees for about 20 minutes for my breakfast. (In addition to a stir fried green like Kale which is just returning from its winter nap in my garden, with two slices of turkey bacon.) I like Japanese sweet potatoes because they are not as sweet tasting to me as regular sweet potatoes or…

  • Invisible Exacerbator

    Judi B
    28 Apr 2012 | 4:32 pm
    I think you already know what this is- it is stress, of course. Ann and I have written about this often, but it bears another reminder for all of us. Recently, an elderly relative died. She was a writer and she owned hundreds and hundreds of books, kept most of her correspondence from her long life, had both published and unfinished manuscripts and poems of her own and of her many colleagues, as well as all of the usual possessions we tend to accumulate over a lifetime. It was a major task to lovingly and respectfully distribute and sift through her belongings. It was also another reminder of…

  • round the world

    Judi B
    3 Apr 2012 | 6:16 pm
    I have had requests for information from Italy,Germany, Latvia, Estonia, and the Czech Republic in the last week. The questions were all different and asked in different skill levels of written English. But everyone was thrilled to be starting the diet and were hoping for success. Some of the people reported that they had no access to the variety of drugs that I mentioned and were afraid that the one drug they were given by their medical system had a bad effect on them. These folks were so glad to look to the diet as another route to restoring their health. Others had no equivalent foods to…

  • digestion issues+ a recipe

    Judi B
    28 Feb 2012 | 3:25 pm
    Some people have trouble with eliminating regularly. Part of the reason is that you may have lost some of the nerve communication with your gut and the peristaltic movements (contractions in the bowel) are not initiated or are weak. There are medications and supplements available to help with this problem. Before trying them, I suggest you try drinking a lot more water every day - up to 80-90 ounces. For people with bladder control issues this sounds daunting. But whenever you are home or have access to rest rooms when you are out and about, it is a very real assist in aiding bowel movements.
 
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    Living Life - One Day at a Time

  • Rewriting my story ...

    30 Apr 2012 | 9:51 pm
    There is a part of my personal history that used to occupy this domain - msplaques.  It was filled with a journey that mostly involved health issues related to several autoimmune disorders that I seemed to have inherited from time as a Soldier in the US Army.  Life is different now.  I'd like to think that those former accounts are behind me, erased from memory (and the Internet) and that I get the chance to start fresh.I like that ... that's more like me.In 2001 I began exhibiting symptoms of Multiple Sclerosis.  In 2002 I was diagnosed with Relapsing-Remitting MS and by…
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    I'm an MS Activist

  • FEDERAL FRIDAYS

    11 May 2012 | 3:00 pm
    Breaking News: CRPD.  As many of you are aware, we have been engaged with many other organizations in working to secure leaders in the Senate to champion ratification of the Convention on the Rights of Persons with Disabilities (CRPD).  More recently we engaged Chapters and MS Coalition members to urge President Obama to transmit the CRPD to the Senate so it can begin the ratification process – yesterday we received notice from the White House that it is ‘expeditiously’  transmitting the CRPD to the Senate for ratification.  We will continue to engage and will work…

  • Ensure Equal Access to Swimming Pools for People with Disabilities

    4 May 2012 | 3:22 pm
    In 1990, Congress passed the Americans with Disabilities Act (ADA) with broad bipartisan support and President George H.W. Bush signed it into law. This historic achievement granted people living with disabilities the rights they deserve and protection from discrimination due to a disability. Specifically, it protects people with disabilities in employment settings, state and local government activities (such as public education and voting), public accommodations (such as hotels and restaurants), commercial facilities, transportation, and telecommunications.Since its enactment, the ADA has…

  • CALIFORNIA MS ACTIVIST IN ACTION

    2 May 2012 | 4:14 pm
    MS activist Melanie Rowen recently provided eloquent and compelling testimony before the California State Assembly Committee on Health about difficulties affording her MS disease modifying therapy. She was there advocating for AB 1800, a bill that would help people like her and so many others facing exorbitant out-of-pocket (OOP) costs for drugs to manage her disease and its symptoms. Assembly member Fiona Ma (D-San Francisco) introduced the bill and it is co-sponsored by the National MS Society’s California Action Network and the statewide health care consumer advocacy coalition…

  • State Success: Rhode Island Purchases 13 New Accessible Taxis

    1 May 2012 | 1:34 pm
    On April 13, 2012 thirteen new accessible taxis were introduced to Rhode Island, greatly improving access to transportation for the mobility impaired. Local taxi companies purchased these vehicles, with support of the Federal Transit Administration’s New Freedom Program. The New Freedom Program aims to reduce barriers to transportation services and expand the transportation mobility options available for those living with a disability. Click here, to read more about the program. The RI Public Transit Authority (RIPTA) and the RI Division of Public Utilities and carriers also provided…

  • FEDERAL FRIDAYS

    27 Apr 2012 | 9:12 am
    Today’s edition got a little longer than usual but be sure to read to the end – you don’t want to miss the part about Ben Bernanke warning that we’re about to go over a ‘fiscal cliff’.  And you’ll then want to click on the article to see how the author rephrases ‘fiscal cliff’ as ‘economic Armageddon.’  But there’s a lot of good stuff in here too so read on! What happens if ACA struck down?  In a word, chaos, according to this story about how winding down the law would be as challenging as implementing it.  The National MS Society Public Policy…
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    Carole's MS blog

  • 15 May 2012 | 4:24 pm

    15 May 2012 | 4:24 pm
    Feeling the Generation Gap Part 2OK so I can't figure out how to edit in the new Blogger  I'll keep trying.In my last post I didn't address the Generation Gap; which I experienced for the first time  at the James Street. Art Crawl.The people in the photo below  are opening a juice bar. As a promotion they were offering samples of a drink that was green and kind of slimy looking. When they offered me some I joked and asked if it was a new version of "Soylent Green"  They had no clue  what I was talking about. My son laughed because he…

  • 15 May 2012 | 4:04 pm

    15 May 2012 | 4:04 pm
    Feeling the Generation GapAhh! Am away from my blog for a month and Blogger decides to go for a "new look". Not the best thing for a tired MS blogger to see and figure out. I suppose I will get use to it but truthfully I'm getting fed up with constant change that really just seems to be for the sake of change. Here's a new study showing that cannabis really does relieve MS symptoms. The draw back is that cannabis can   decrease cognitive  function. My answer to that , me being a legal marijuana user,  is to only use it  in the…

  • April!!

    9 Apr 2012 | 11:36 am
    Ahh is it really April already and have I not been blogging for so long?My excuse this time is disenchantment with the entire internet, but most especially with social networking.It really blew my mind when I found out  that co-workers troll the various networks like Facebook, with the express purpose of being  tattle tales. Imagine a person going to the big boss, to tell them how they read on a blog, (not mine) that a person on a disability pension, went on a cross border shopping trip to Buffalo. The disabled  individual…

  • Medical News - Not So New

    28 Feb 2012 | 10:09 am
    Once again I have neglected my blog. At least I have an excuse. The wireless router on my computer has been acting up. Seems like I have no choice but to continue buying the latest technology, just to keep up. Two interesting articles in the news. The first one is in regards to an MS drug that is responsible for 11 deaths due to heart failure.  I'll comment in the next paragraph. The other is about over diagnosis  The  reasons I don't take any medications for my MS, except  medical marijuana, is due partly  to my concerns over side effects, but mainly because I don't…

  • The MS Card

    31 Jan 2012 | 9:34 am
    So much I want to write about. When I have time, I have no energy.  When I have energy, there are so many other things that need attention. And of course when I really do need energy, MS laughs at me and  drains every drop.The MS Card.  In some ways it is like a credit card, in the bad sense; that the MS card will always have a deficit and  it will be a temptation to use it.  What exactly do I mean by the MS card? Well I guess it is something I can use to explain why there are so many things I would like to do, but MS prevents me…
 
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    Carnival of MS Bloggers

  • Carnival of MS Bloggers #114

    10 May 2012 | 11:20 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Powerful Food, Pseudoexacerbations, and B/B DysfunctionUnmentionable Bitsby Webster of halt stop forget relax I imagine that many of you with MS deal with the dreaded B&B issue; not the second B - Bladder - which gets lots of attention. We either pee too often, or not enough, or get UTIs all the time, or wet our bed, or our pads, or ourselves. But the first B - Bowel - is the one that rarely gets talked about, and when it does get talked (or written…

  • Carnival of MS Bloggers #113

    26 Apr 2012 | 10:04 pm
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.The Diagnosis Game, Power of "Om," and Coping with ChallengesNote: My apologies for delayed publishing of the Carnival. Life has been crazy with plumbing issues, solo festivals, and a personal battle with depression and anxiety.Limbolanders: Deal or No Deal?by Laura of Inside MyStory Howie Mandel has invited you to a special edition of “Deal or No Deal,” where the lovely but scantily clad physicians assistants and nurses present you with the opportunity…

  • Carnival of MS Bloggers #112

    12 Apr 2012 | 3:26 pm
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Acceptance: Anger, Uncertainty, and Murphy's LawGet Mad, Get Really Mad by msrecess  “That’s so annoying.”  Those were the words I found myself saying to Mom today on the phone while she talked about an issue she was having with her ankles today.As I was talking to her, something happened.  Instead of trying to solve her issues or getting sad myself, I told her ”that’s so annoying, Mom.”  And I…

  • Carnival of MS Bloggers #111

    29 Mar 2012 | 4:36 pm
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Coping, Cognitive Issues, and Social SecurityNEUTRALIZEDby Maris Mohr I think I woke up this morning,or did I sleep at all? . . .The mirror reflects empty space –nothing to reveal my wondering gaze.Even in a room full of occupied seatsI feel unconnected to everythingDrifting ~~~~ between what I thinkI want, needEnding misunderstood, rejectedFeeling dejected, facing a raging wall ofwhy it can't beGiving in, my oblivion strengthlessArguing on no longer in…

  • Carnival of MS Bloggers #110

    15 Mar 2012 | 8:59 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.Story TimeMS You're Never Gonna Win! by Madeline Adams-GurowitzThanks, Amy! You're daughter totally rocks!!Newbieby Annie of Mama Melee SocietyI am new at this game. It’s been five months, one hundred and fifty one days to be exact, since I experienced my first MS symptomTo those who have struggled with MS for many years, five months may seem trivial, but to me, as a so-called beginner, it’s been a long five months. I feel like I’m just beginning to…
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    Maggsbunny

  • Fun with the iPad….

    Maggie
    30 Apr 2012 | 4:15 pm
    Michael is a constant supply of entertainment with his iPad and the apps he downloads for it. Observe… First up, an app called Fattify. (So this is what I would look like if I was a bit plumper, lol. Maybe then people would stop accusing me of being skinny all the time). Then there’s the other app he downloaded, which is slightly less facetious A ‘sketch’ of a very young Beary and I (me with ultra short hair)…   Also, this photo taken a few weeks ago, of me and Beary and Teddy… Fun, I tell ya ;-D  

  • Lovely long weekend.

    Maggie
    29 Apr 2012 | 6:37 pm
    Despite Michael being in a fair amount of pain with his back, we really did have a great long weekend. Unfortunately, we went to sleep really late every night since Thursday, and now my sleep cycle is good and wrecked again. It does slot so easily back into me being a total night-owl if given the slightest opportunity! Now I want to go to sleep at 2am and get up at 10am, and this is not particularly productive, what with the rest of country being active from 6 or 7am onwards. I must have been a hamster in a previous life Anyway, it is now 01:05 am and I am not even sleepy. The only thing I am…

  • Pooch Potato

    Maggie
    21 Apr 2012 | 3:22 pm

  • Something nice happened to me yesterday…

    Maggie
    20 Apr 2012 | 6:26 am
    … I stepped in some dog sh*t. But that wasn’t the best part. No, the really good part was that five minutes earlier I had taken off my spiffy new takkies, and put on my old, skanky ones, to take the dogs for a walk. Frankly, the dog-poo very nearly improved their condition. (I’m not really a ‘shoes’ kind of girl. I know, I must be the only one. But seriously, I hardly ever buy myself new ones. So I was really taken with these… A proper brand name and everything. So when I stepped in the dog poo (you know how you immediately know what it is when you step in…

  • Oh, to be this joyful…

    Maggie
    16 Apr 2012 | 3:08 pm
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    Brass and Ivory: Life with MS & RA

  • Arthritis Awareness Month: Tools in the Kitchen

    15 May 2012 | 12:16 pm
    In honor of Arthritis Awareness Month, we are having a giveaway contest here on Brass and Ivory.  Two winners will each receive a set of six selected kitchen tools from the Stress Less line made by Trudeau. Here are the contest rules: Using the letters from the word RHEUMATOID, create as many English words as you can.  Each word must have at least 6 letters and each letter in the word RHEUMATOID may only be used once. The persons who come up with the most 6+ letter words will win the giveaway. In the case of a 3-way tie, words duplicated on each list will be eliminated and the…

  • FDA vs. CCSVI: The Safety Alert Has Good Advice

    11 May 2012 | 9:48 am
    How do you get the world to take notice of a controversial theory and treatment regarding MS and narrowed veins?  You get the FDA to issue a safety warning. Only if you were completely separated from the online MS community yesterday did you miss the alert coming from the FDA regarding Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the "liberation procedure" used to open narrowed veins. CCSVI has been discussed widely throughout the MS community since mid-2009 (yes, even before the Canadian news picked it up in October or November that year).  There has been a huge firestorm…

  • Carnival of MS Bloggers #114

    10 May 2012 | 11:22 am
    Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis. Powerful Food, Pseudoexacerbations, and B/B Dysfunction Unmentionable Bits by Webster of halt stop forget relax I imagine that many of you with MS deal with the dreaded B&B issue; not the second B - Bladder - which gets lots of attention. We either pee too often, or not enough, or get UTIs all the time, or wet our bed, or our pads, or ourselves. But the first B - Bowel - is the one that rarely gets talked about, and when it does get talked (or written…

  • Hormones and Multiple Sclerosis

    9 May 2012 | 8:17 am
    Pregnancy, menstrual cycles, menopause and MS are the subjects of the following excerpted post: Are you peri-menopausal or post-menopausal?  Has menopause seemed to effect your MS?  The question as to what extent menopause effects MS is one which has not been thoroughly studied.  Women may talk about MS symptoms getting worse during menopause (Smith, 1992), but does menopause effect the clinical course of the disease? According to recent research, presented as an abstract at the American Academy of Neurology annual meeting (2012) in New Orleans, menopause does not appear to…

  • Arthritis Awareness Month: Show Us Your Hands!

    7 May 2012 | 1:38 pm
    May is National Arthritis Awareness Month.  I missed sharing the announcement on May 1 regarding the release of the 1,000 Hands Poster Project (see below), but it's never too late.  Show Us Your Hands! is an awesome project spearheaded by my friends RA Guy and Lene Andersen. I ordered my poster last week. Even better is the announcement that Show Us Your Hands! has released a new photo book Our Hands Can! - "the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness…
 
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    Navigating the Journey of MS

  • Puppy mill raid

    15 May 2012 | 3:39 pm
    Last week yet another horrible puppy mill (breeder) got raided. It was 10 pm when the Sheriffs dept showed up. They found a 10 yr old home alone with a DEAD goat in the living room and cow carcasses burning in the yard. The owner showed up about 11:30 pm and promised to feed the dogs. The next morning authorities and the humane society showed up to sieze over 70starving siberian huskies. The kid went to foster care. The goats and other farm animals were given to a localfarmSince that time a few of the dogs had to be put down. Who knows how many more willbe. Needless to say our small humane…

  • Neuro appt

    11 May 2012 | 2:15 pm
    Wednesday was my neuro appt. It was a cold rainy day (great for MS)It took us over 2 hrs to get there and arrived half hour late,stressed and frustrated. Like we both thought would happen did. My neuro hs decided to stop my current treatment, which I only started  in December. But I have been sick since I started it and getting worse. So I currently on nothing waiting to be approved for another treatment. Yikes ! My body hurts so bad. I had my horseback riding lesson yesterday and it was the first time I did not have agood time. I was in so much pain. My leg was twitching, kicking my…

  • www.TheMSShoppe.com

    1 May 2012 | 2:28 pm
    Please stop by and visit our websitewww.TheMSShoppe.com Owned and operated by a person with MS We have a fun selection of tshirts, bears, cooling items and Orange Ribbon Awareness items

  • Another Walk MS

    29 Apr 2012 | 11:21 am
    Yesterday was the Walk MS near our home. In fact, it is about a mile from our home. Tough commute..The weather was dreadful. They had been preciting a chance of SNOW. That four letter word we dont want to hear this time of year as we prep our boat for the water. We didnt get any snow but it was cold and rainy and NO walkers. I dont think there were more than 100 people who showed up. There were more volunteers than walkers.In the past years this location has gone through many changes. I was on the committee when I was first diagnosed but it became very apparent it was going to be run by a…

  • Cupcakes be gone

    26 Apr 2012 | 10:04 am
    For Mark's birthday I purchased Georgetown Cupcakes. We are not traditional people and rarely have a sheet cake for a birthday. Ususally we get a cheesecake or a carrot cake but I kept hearing about how wonderful these cupcakes were so I decided to splurge and buy a dozen to celebrate his birthday. So a splurge they were. They are expensive and then add shipping on top of that but WOW these were the best cupcakes, cakes, cheesecakes I have ever eaten. I have to believe they were extremely fattening but wow they were good. Mark has been out of town and it was poor planning on my part to hve…
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    Word Salads or the Demyelination of Me

  • Things are afoot...

    Have Myelin?
    15 May 2012 | 1:56 pm
    So much is afoot - I guess I'll begin at the end. In case you don't know, my mother moved in with me.  She'll hate me for saying this but she is sick.  All kinds of medical tests are underway. I am tired of falling dominoes. Andrew's other grandmother and aunt are fighting their own very serious health battles. His aunt and I were close until his father and I divorced and of course his dad got custody of his sister.  My mother, we await answers to many questions. Time can be both a friend and an enemy and I like instant answers when it comes to medical issues.

  • Happy Mother's Day

    Have Myelin?
    13 May 2012 | 11:06 am
    to all the women I love, and lost.

  • Not rational

    Have Myelin?
    9 May 2012 | 4:06 pm
    A whine first:  I miss having energy. Normally I have the house unpacked in a week or so but not this time.  So much to unpack.You won't believe it but I immediately started noticing what was missing. We had two semi's and a truck full of stuff delivered AND it is not all there. Where's this?  Where's that?  The missing items really bother me. Nicole's large blue turtle is gone. So is the marvelous scrapbook I did - her last fortune cookie, her library card, her social security card and more are in that book. I want it back. A collection of mementos cannot be…

  • Auditory hallucinations?

    Have Myelin?
    8 May 2012 | 2:10 pm
    When I came down the stairs a few minutes ago, I heard "Sherry?  Sherry?" again. It was much fainter this time.  I listened for more - nothing came. Imagine the impact a sentence or two!  What if my grandmother said something pertinent?  I don't believe it's possible but then again I believe nothing's impossible to a degree.Alex said my experience was interesting. He relayed a story about his grandfather spiritually checking on the kids after he died.  Hmm, all new to me.

  • "Sherry? Sherry?" ...she whispered

    Have Myelin?
    5 May 2012 | 5:48 pm
    Let me paint you a picture:  mom is in the bathroom and I'm unloading stuff in the bed room. I do not have my cochlear implant processor on.  FYI:  an implanted ear cannot pick up sound whatsoever without the processor on.  I put my grandmother's pink gold watch on and went downstairs to show mom. Mom is in the bathroom so I keep unpacking.  I hear "Sherry?  Sherry?" in a soft but very clear voice in my implanted ear. I knew it was impossible immediately but somehow I had heard mom call me from the bathroom. The bathroom door was locked. I found…
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    MS Maze

  • Tanning trumps skin cancer fears for young adults

    Ann Pietrangelo
    14 May 2012 | 3:29 pm
    Young adults would rather indulge in tanning today than worry about skin cancer tomorrow. Tanning is the norm in some circles. It’s expected. Skin cancer is the most common form of cancer in the United States, and melanoma is the most deadly type of skin cancer, but that’s not scaring young adults from the lure of the tanning booth. Read it: Tanning trumps skin cancer fears for young adults

  • 7 Questions about ANGER

    Ann Pietrangelo
    13 May 2012 | 5:26 pm
    Everyone knows what it feels like to be angry. Yet the causes, effects and ways to control anger are not well understood. Howard Kassinove, PhD, ABPP, is professor of psychology at Hofstra University and director of the university’s Institute for the Study and Treatment of Anger and Aggression. The following feature was produced by the American Psychological Association (APA). 7 Questions about ANGER: How To Recognize and deal with a common emotion… Read it: 7 Questions about ANGER

  • Mom Dies in Pool Accident: Pool Slide Recalled

    Ann Pietrangelo
    10 May 2012 | 3:47 pm
    A 29-year-old Colorado mother died in Andover, Mass. after fracturing her neck going down a Banzai in-ground pool water slide which had been placed over the concrete edge of a pool. The woman hit her head at the bottom of the slide because it had partially deflated. Read it: Mom Dies in Pool Accident: Pool Slide Recalled

  • Recording Artists: Does your website scream “amateur?”

    Ann Pietrangelo
    9 May 2012 | 12:38 pm
    If you’re a recording artist, Facebook and Twitter are good promotional tools, but your official website is the key to your online presence. That website should be a place where fans can get a feel for your style, sample your music, and even make a purchase. All visitors are potential fans in the making, but you only have a few seconds… Read it: Recording Artists: Does your website scream “amateur?”

  • No More Secs or No More Sex: What’s in a name?

    Ann Pietrangelo
    8 May 2012 | 2:08 pm
    I didn’t write a sex book. That statement hardly seems like a news flash, but I feel obligated to say it anyway. Read it: No More Secs or No More Sex: What’s in a name?
 
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    The Self-Healing Coach

  • The Universe Hooked Me Up!

    Karen
    14 May 2012 | 4:57 pm
    Photo by Samantha Celera, Flickr So I’m on my knees, praying. That’s where I left the story in my last post. I was praying for an opportunity to present itself that would allow me to work from home, be of high service to others and connect deeply with them, and provide the opportunity for a robust income, despite the daily challenges and limitations of living with MS. I prayed for weeks, and then I fell into a phase of watching Lost on Hulu and praying gave way to hours of admiring the fine contours of Sawyer’s body as he walked around the Island without a shirt on. (I…

  • I Want It Now!

    karen
    10 May 2012 | 7:14 pm
    Veruca Salt, from the original Charlie & the Chocolate Factory Those who are certain of the outcome can afford to wait, and wait without anxiety. – A Course in Miracles I love this quote. Partly because it soothes me and reminds me to have faith in the Universe, that all my needs and true desires will be met and I will be led where I need to go. I also love this quote because the petulant child in me reads it and is instantly provoked to stomp my feet and scream “But I want it NOW!!!” a la Veruca Salt in Charlie and the Chocolate Factory. It’s good for me to…

  • The Infernal Path

    Karen
    8 May 2012 | 10:04 pm
    Photo by Alan Carter, Flickr I haven’t published anything on this blog since February 1st. More than three months have gone by. I wish I could tell you that I haven’t posted because I’ve been busy traipsing around the world in my flourishing, virile body, with all my buckets of money and a sexy lover by my side. But, alas, such would be a lie. A coveted fantasy, sure, but still a lie. What I’ve actually been doing the past three months is falling deeper and deeper into a black hole of sickness and depression – a vicious chicken-or-the-egg sorta cycle where I…

  • Healing Is the Province of the Soul

    Karen
    1 Feb 2012 | 4:00 am
    Following is an excerpt from renowned teacher and author Caroline Myss’s 2-CD set Channeling Grace. I transcribed this short section because it’s a crucial point for us all to remember on our healing journeys: “What is healing? I’ve said before and I will say a thousand million times – healing cannot be done through the mind. The mind is an inadequate tool for healing. And in our culture, because we are so married to our mind and so enamored with our intellects, we actually believe that we can outrun a disease with the arrogance in our mind, when our mind is…

  • The 10 Most Common Candida-Diet Mistakes That Could Be Keeping You Sick

    Karen
    29 Jan 2012 | 6:30 pm
    As most of you may know, I eat a very specific diet based on Ann Boroch’s recovery program, as outlined in her books Healing MS and The Candida Cure. The purpose of the diet is to starve the body of Candida, fungus, parasites, viruses, and infections – all those nasty buggers that live in our guts and lead to disease. And, at the same time, to feed our bodies the high-quality foods that contain the nutrients our cells need to detoxify and function optimally. The basic rules of the diet are no sugar, no gluten, no wheat, no dairy, no soy, no alcohol, and nothing fermented. Instead,…
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    MS Trust Recent Story List

  • Cannabis for pain and spasticity

    13 May 2012 | 6:00 pm
    A small study in California found smoked marijuana improved spasticity and pain in people with MS but also reduced thinking ability. The study was a crossover trial involving 30 people who smoked either marijuana or a placebo once a day for three days. After an eleven day gap, the groups swapped to the other treatment. Among limitations of this study was that it was difficult to blind participants to the active treatment and many had a history of marijuana use. National MS Society (USA) Newswise Reuters Pain - A to Z of MS Spasticity - A to Z of MS

  • FDA safety review of fingolimod (Gilenya)

    13 May 2012 | 6:00 pm
    The FDA (the American health regulator) has decided that it could not link fingolimod to the deaths of people taking the drug but that it remains concerned about its effect on heart rate. Recommendations on monitoring people before and during their first treatment are similar to those issued by the EMA in Europe in April. FDA Reuters Fingolimod (Gilenya) - A to Z of MS

  • Vitamin D and disability in MS - AAN

    13 May 2012 | 6:00 pm
    Researchers in Baltimore have shown that higher vitamin D levels are associated with slightly less disability and greater preservation of gray matter in people with MS. 469 people were monitored for five years. Presented at the AAN meeting in April. Internal Medicine News Vitamin D - A to Z of MS

  • Proposed changes to DLA

    12 May 2012 | 6:00 pm
    The government is beginning to focus on changing DLA. The coverage focuses on money saved rather than care needs, with annual savings of £2.24bn mentioned from cutting the number of claimants by half a million. Daily Telegraph Guardian BBC

  • Research into progressive MS

    10 May 2012 | 6:00 pm
    Report of an international meeting on how research in this area can be speeded up though developing new or improved clinical measures of MS progression. National MS Society (USA) Research pages
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    MS Trust Stop Press

  • Chatroom today - Secondary progressive MS: managing the transition

    15 May 2012 | 6:00 pm
    Understanding and coping with the change from relapsing remitting to secondary progressive MS can be challenging. With fewer relapses and disability gradually increasing, approaches to treatment and managing symptoms can change. Today's next chatroom will explore this topic.

  • Dying Matters Awareness Week

    13 May 2012 | 6:00 pm
    This week, 14-20 May, is Dying Matters Awareness Week.

  • Secret Art Show – Now Open for Sales!

    10 May 2012 | 6:00 pm
    You can now buy your unique piece of art via the Secret Art Show gallery. With over 470 artworks, we are sure you have already identified many favourites and judging by the number of visits to our website this week, this will be our most popular show so far. If you cannot access the exhibition on your first attempt, please do come back later.

  • Summer Ball at Aintree Racecourse

    8 May 2012 | 6:00 pm
    Fantastic fundraiser Rick Halsall has again organised a Summer Ball at Aintree Racecourse in support of the MS Trust.

  • Get involved! – The NICE MS guideline update group

    7 May 2012 | 6:00 pm
    Applications are invited to join the NICE Guideline Development Group on the management of MS in primary and secondary care.
 
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    The Lesion Journals

  • Hey San Diego!

    Christie @ the Lesion Journals
    9 May 2012 | 8:11 am
    My neuro is hosting a great seminar series on living with MS. I went to his first of the summer and it was great. He’s informative and funny which makes for a great presentation. If you live in the San Diego area, check out these upcoming seminars:Multiple Sclerosis and Your EmotionsMay 10, 2012 at 6:30PMMultiple Sclerosis and Heat ManagementJune 14, 2012 at 6:30PMBest,Christie

  • My First Date with Tysabri

    Christie @ the Lesion Journals
    26 Apr 2012 | 10:05 pm
    Infusion without incident.  That’s how I would describe my first Tysabri treatment. It was not terribly exciting, kind of boring actually. My nervousness was more eventful then the actual infusion and its aftermath, or lack thereof. We arrived to my appointment about 2-3 minutes late and had to wait for some time before entering the Infusion Room. As my sweetie and I sat, my stress and anxiety began to swell. Did we arrive too late? What if they won’t take me now? What if I have to reschedule this infusion? This will force me to reschedule all the subsequent appointments I already…

  • My MS Haiku

    Christie @ the Lesion Journals
    6 Apr 2012 | 10:33 pm
    vast cool open greyits power envelops mesettle into calm(c) 2012 Christie Germans

  • Subtract Negative for More Positive

    Christie @ the Lesion Journals
    3 Apr 2012 | 10:08 pm
    “Every time you subtract negative from your life, you make room for more positive”.I would love to say that I am the type of MSer who always focuses on the positive wearing rose colored glasses while holding the proverbial glass of water that is indeed half full. Yet, sometimes I have bad days and the negative seeps in and before I know it I am wearing very dark sunglasses while holding a completely empty glass of water.Why? Well, first I am not positively perfect. I get cranky. I have bad days. Sometimes I am sad. Sometimes I am angry. Sometimes I am just not in the mood to see the…

  • What's on my (MS) Mind?

    Christie @ the Lesion Journals
    26 Mar 2012 | 8:20 am
    Every social media platform asks me what I am thinking about, what’s happening, what’s on my mind. Well, let me tell you. I have a lot on my mind. My mind is inundated with lots of things, some important, some just my own inner ramblings.  Social Media Universe: So, Christie, what’s on your mind?Christie: (struggling to come up with something in 140 characters or less) Well, at the moment I have a lot on my MS mind. This is just a sampling:I am wondering when my vertigo will stop. I had another bout of it last night at the office. Make the spinning stop. Make the spinning…
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    Wheelchair Kamikaze

  • The Wheat from the Chaff

    The Wheelchair Kamikaze
    10 May 2012 | 12:06 am
    Taking mental time trips back into my own past, I realize that much of what caused the healthy but neurotic me endless fretting, worrying, and anxiety was in retrospect barely more than a collection of relative trivialities, and that most of the issues that consumed me were really just a massive amount of stupid crap. I wish I could be one of those people who claim that they have no regrets and wouldn't change a thing, but looking back on that all too finite time when I was wonderfully free from the stranglehold of progressing disability, I'm dismayed at the amount of precious time I wasted…

  • Pleased to Meet Me (Redux)

    The Wheelchair Kamikaze
    2 May 2012 | 10:18 pm
    Narcissus (Photo credit: pogobee) (I've been fighting a bug this past week, and also dealing with some "personal issues" - don't those always sound maddeningly intriguing - so I'm going to put up the first ever "The Best of Wheelchair Kamikaze" post this week. The post was chosen by very exclusive selection committee, namely me. It first appeared on the blog on August 13, 2009, so it's an oldie but a goodie. If you haven't previously read it, I hope you enjoy it. If you have already read it, please make believe you haven't, because as delusions go, self-delusions are one of my favorites.

  • Parallel Universes

    The Wheelchair Kamikaze
    24 Apr 2012 | 12:44 am
    Brugge Reflections (Photo credit: Wikipedia) The very personal world that we consider ourselves to be part of is entirely determined by self-definition. Many elements combine to make up our sense of self: past histories and experiences, the friends we choose to surround ourselves with, our mates, life partners and children, the jobs we do, the dwellings we occupy, the material objects we possess. These are just a few of the many components we use to construct our realities. One of the key elements involved in our self defined realities is health, which can easily be taken for granted when…

  • Bits and Pieces: a Smorgasbord of MS Info

    The Wheelchair Kamikaze
    16 Apr 2012 | 4:00 am
    A photograph of part of page 65, Woman's Home Companion, August, 1921, to get the 1921 Underwood logo (Photo credit: Wikipedia) (To those who receive these posts via e-mail, this post contains several videos, which can only be viewed on the Wheelchair Kamikaze website…) Well, how often do you get to see the word smorgasbord in print these days? Seems when I was a kid, back in the 70s, you heard the word smorgasbord a lot more. But then again, maybe it was just my family, although I don't know why a working-class Jewish family in Queens would use the word smorgasbord all that much. So, I'll…

  • Some New Photos, Some Shot with a New Toy

    The Wheelchair Kamikaze
    6 Apr 2012 | 11:38 pm
    The camera in the iPhone 4S (Photo credit: Wikipedia) It's been a while since I added new photos to the gallery (featured in the sidebar on the left), so here's another batch. The first seven were shot with my usual wheelchair mounted camera rig (click here for info). I recently upgraded my camera to a Panasonic Lumix GH2 (click here), for which I am quickly developing an affection, but that's not the new toy I'm talking about in the title of this post… My newest gadget is (drumroll please)… an iPhone! The remaining 11 photos posted down below were all taken with my new iPhone 4S, a…
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    livingms

  • Bucket List ?

    foxfires71
    14 May 2012 | 2:09 pm
    Nico is 14 weeks old now and his basic training, socialization and bonding is progressing.  I will write more about him and chronicle his training in future posts. Today I wanted to ask everyone a question.  How many of you maintain “bucket lists”.  Slightly different than the goals lists we talked about in previous posts.  This list is more a fun list of things you would like to do before you die no matter how crazy or unrealistic they may be. I keep one of those too and looking at that list from year to year makes me smile.  Has yours changed since being diagnosed with…

  • A New Friend in the Daily Struggles…

    foxfires71
    13 Apr 2012 | 4:03 pm
    Meet Nico.  He is a German Shepherd puppy trying his best to find out if he has what it takes to be a service dog.  Well; right now, he’s just trying his best to learn about his new home and some basic obedience: but in his mind, he’s destined for something great. He’s already done something great for me.  He’s taken the “I” out of me; now it’s “we”.  It’s been a tough year, and truth is, some mornings I just didn’t feel like getting up.  Some evenings I was in so much pain, I skipped my exercise all together…even…

  • Keeping perspective…Finding care that matters

    foxfires71
    20 Mar 2012 | 10:50 am
    “It is not death that a man should fear, but he should fear never beginning to live.” - Marcus Aurelius It’s been quite some time now since my last post.  I apologize.  I intend; with great effort, to continue to improve this site; but for now, an explanation and a very personal realization. I hope that you will strive to find the best possible care and not settle for less. When I first received this diagnosis of Multiple Sclerosis, I went into auto pilot mode.  I began to pour over technical papers and read as much as I could on the latest and greatest innovations…

  • Relationships and MS…

    foxfires71
    26 Jan 2012 | 10:29 am
    At some point, most of us are confronted with having to tell someone; whether it’s a significant other, potential partner, friend or family, about our struggles with multiple sclerosis.  Choosing to disclose the illness; no matter who is listening, is a very personal decision and once the information is shared, we can’t take it back. Responses can vary as much as the symptoms we experience with this disease; so it’s important to consider the decision carefully. Coming up with a plan of action ahead of time helps us feel less vulnerable and more in control of the situation.

  • Traveling with Multiple Sclerosis

    foxfires71
    17 Jan 2012 | 11:07 am
    Long lines, delays, mysteriously missing reservations, and lost luggage are just a few of the annoyances that come with traveling.  These annoyances are dreadful for everyone, but if you are a traveler with special needs, they sometimes become serious issues.  Combine that with all of the considerations that must go with planning a trip when you have special needs and a trip seems daunting.  Fortunately; Ingenuity and some careful planning help keep the enjoyment in the trip. Planning a Trip First consider how long you plan to be gone, where you plan to go and how you plan to get there.
 
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    Life in Spite of MS Blog

  • My Marriage is Failing...

    8 May 2012 | 11:15 am
    ...Since I Have Symptoms of MS Hi Montel, I want you to know you are an inspiration to us all. I have not had an official diagnosis of MS, but I can assure

  • ART IS TO BE LOVED!

    6 May 2012 | 4:07 pm
    The creative energy, that spills itself onto the canvas manifest through the creation of love and joy. I visualize what a person wants. I see and feel

  • Multiple Sclerosis Directory-M (Authors)

    5 May 2012 | 12:14 am
    The Multiple Sclerosis Directory-M page by authors last name, is where you are now. Click on the link(s) to find listing of MS website authors. We'll be adding to this list as we go along.

  • Guest Articles

    3 May 2012 | 11:30 pm
    Here you'll find Guest Articles about topics that may be of interest to you. We wish to provide only original, valuable, information that is found no where else on the web. Please leave comments.

  • My Second Deployment...

    3 May 2012 | 10:23 pm
    ...And It Isn't Iraq! I thought leaving my daughter for a year in Iraq in the US Army was tough but after being diagnosed four months after my honorable
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