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Friday, June 5, 2015

Researchers Find Missing Link Between the Brain and Immune System

Provided by:  
Cherie C. Binns RN BS MSCN -Clinical Systems Consulting



The following link was shared with me by the Neuro Institute of New England today.   It is an interesting read and will be something to watch and see how this actually assists our Medical Teams to treat MS more efficiently.




This shows the maps of the lymphatic system: old (left) and updated to reflect UVA's discovery.

Maps of the lymphatic system: old (left) and updated to reflect UVA’s discovery. Image credit: University of Virginia Health System.


Click above link to read this Research information



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Action Needed TODAY: MS Research Funding in Jeopardy

Act Now For MS



Dear MS Activist:
We have just learned that an amendment may be offered in the U.S. Senate which would eliminate the MS Congressionally Directed Medical Research Program (CDMRP). Over the past several years, the CDMRP has funded $33 million of important innovative MS research. The amendment to the National Defense Authorization would eliminate funding for this type of valuable medical research.


Act Now




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Highlights from the American Academy of Neurology's 2015 Annual Meeting - includes PPMS updates

The American Academy of Neurology's (AAN's) 67th Annual Meeting took place in Washington, DC April 18th-25th. The AAN is an association of more than 27,000 neurologists and neuroscience professionals dedicated to advancing the care of individuals with neurologic disease. Every year, these professionals gather to hear the latest findings in research and treatments for neurological conditions, including multiple sclerosis (MS). To follow are some important highlights.

Clinical Trials

Daclizumab HYP - The DECIDE Trial of RRMS


Daclizumab high-yield process (HYP) is a new therapy that has been studied in relapsing-remitting multiple sclerosis (RRMS). It is a humanized monoclonal antibody against CD25, a receptor on T cells that is thought to become activated in MS. Daclizumab is believed to work by selectively targeting these activated T cells without causing general T-cell depletion.

This therapy results in a "reversible modulation" of the immune system. This means that while the medication alters the immune-system response to slow the attack caused by MS on myelin and nerves (axons) of the brain and spinal cord, it does so without causing permanent changes to immune system function. DECIDE was a randomized, double-blind, active-controlled study ("active-controlled" denotes that the control group was given an existing treatment that has already been shown to be effective, versus a placebo, which has no active ingredients). This study compares DAC HYP 150mg injected subcutaneously once every four weeks, to intramuscular interferon once weekly. The primary endpoint was the annualized relapse rate (ARR). A total of 1,841 patients were randomized into the study.

Treatment with DAC HYP versus interferon resulted in a 45-percent reduction in the ARR and a 41-percent reduction in the proportion of patients who relapsed. MRI outcomes were also positive favoring DAC HYP as this agent brought about a 54-percent reduction in the number of new/enlarging T2 lesions (more intense lesions, which are areas of inflammation). Furthermore, DAC HYP reduced the risk of confirmed disability by 16 percent. The benefits of this drug compared to interferon were seen in many subgroups of patients - men, women, both older and younger than 35, and irrespective of prior treatment with interferon. The authors concluded that DAC HYP demonstrated superior efficacy compared with weekly interferon across key clinical, radiographic, and patient-reported MS outcome measures in relapsing MS patients.
A variety of side effects and adverse events were seen with this agent. Infections, significant skin reactions, and liver effects were observed. The side-effect profile and safety issues will warrant careful monitoring if this medication is approved.

Immediately following the AAN meeting, the United States Food and Drug Administration (FDA) accepted for review the Biologics License Application (BLA) requesting marketing approval of Daclizumab HYP for relapsing forms of MS. If approved, this will be marketed under the brand name Zinbryta™.

Gilenya® (fingolimod) - The INFORMS Trial of PPMS


Gilenya is an FDA-approved oral treatment for MS that blocks lymphocytes from exiting lymph nodes and reaching the nervous system. It is approved for RRMS, and was studied in a large, randomized, double-blind, placebo-controlled trial called INFORMS, to assess efficacy in patients with primary-progressive MS (PPMS). A novel primary composite endpoint was used, based on increase in disability as measured by the Expanded Disability Status Scale (EDSS), the 25-Foot Timed-Walk Test (T25FW), and the 9-Hole Peg Test (9-HPT). Other key endpoints were the formation of new lesions and percent brain volume change (PBVC), or brain atrophy (the shrinking or reduction of brain volume).

INFORMS was a three-year trial that randomized 970 patients, and was adequately powered (that is, enough patients were included and enough measurements were made) to assess the primary endpoint. Unfortunately, none of the endpoints were met. Gilenya did not prevent the accumulation of disability in patients with PPMS any greater than placebo. Furthermore, PBVC did not differ between the Gilenya and placebo groups.

Unsurprisingly, given this agent's success in preventing relapses and new MRI lesions in RRMS patients, there were fewer new MRI lesions seen in the Gilenya-treated patients. The safety results were generally consistent with fingolimod in prior MS trials. It is disappointing that Gilenya did not significantly slow disease progression in PPMS. These findings have important implications for the understanding of PPMS, and will no doubt allow researchers to refine how PPMS is studied moving forward.


MD1003 - High-Dose Biotin in Progressive MS


Biotin is a vitamin involved in key steps of energy metabolism and fatty acid synthesis, though most people think of it as being "good for hair and nails." Among other actions, biotin activates an enzyme in myelin synthesis. Using this hypothesis and building upon data from a small, open-label pilot study, MD1003, a high-dose biotin preparation of 300 mg/day, was studied in a Phase III trial of patients diagnosed with secondary-progressive MS (SPMS) or PPMS. (This dose is hundreds of times higher than what can typically be purchased as a supplement of this vitamin.) In a relatively small study, 154 patients were randomized to high-dose biotin or placebo.

The primary endpoint of the study was defined as the proportion of patients who improved at nine months, with a confirmation of the improvement at 12 months. Improvement was defined as either a decrease in EDSS (Expanded Disability Status Scale) or an improvement in T25FW (timed 25-foot walk) of at least 20 percent.

The primary endpoint was met, with 12.6 percent of patients in the MD1003 arm showing an improvement of EDSS or T25FW at nine months and confirmed at 12 months, compared to none of the patients in the placebo arm. The primary endpoint was supported by secondary analyses showing evidence for a decrease in the risk of disease progression. These numbers are encouraging, although it is important to note that the decrease in disability experienced by the MD1003 group, and the disease progression seen in the placebo group, were both so small, they would be virtually undetectable in clinical practice. MD1003 was well tolerated. The overall incidence of adverse events was similar across the two groups. One patient treated with MD1003 died from suicide; however, this event was not considered to be related to the drug.

These results suggest a possible therapeutic effect of high-dose biotin in progressive MS, and merit further study. Though this trial gives initial support for its potential use, a larger trial will need to be done to truly understand whether biotin is an effective treatment in progressive MS. Noting that the dose of biotin studied would require taking hundreds of commercially-available pills of this vitamin, it is certainly not recommended that patients begin such a regimen at the present time. Studies also need to determine if any toxic effects could result from taking such high doses of this vitamin.

Neuroprotection in Optic Neuritis


Anti-LINGO-1 - The RENEW Trial


Anti-LINGO-1 is an agent under investigation for its potential remyelinative properties, after animal studies showed that it blocks this protein responsible for stopping the growth of myelin. Agents aimed at remyelination would repair or regrow myelin, the protective covering of the nerves, which is damaged by MS.

RENEW was a Phase II, randomized, double-blind, placebo-controlled, study of Anti-LINGO-1 in subjects experiencing their first episode of acute optic neuritis (AON). An equal number of subjects were randomized to receive either a placebo or anti-LINGO-1 (100 mg/kg) once every four weeks for six total doses. Follow-up extended 12 weeks after the last dose.

The primary outcome of RENEW was an assessment of recovery of optic-nerve function measured by the speed at which the nerve conducts visual signals. This was studied by evaluating a test called Full Field Visual Evoked Potential (FF-VEP) in participants treated with anti-LINGO-1, compared with placebo. Patients who were treated with at least five of the six doses of anti-LINGO-1 showed a 34-percent improvement in optic-nerve conduction latency (delay in the speed of the visual signal) at week 24, compared with placebo. Further recovery in optic-nerve conduction was observed at the last study visit (week 32), with a statistically significant 41-percent improvement. Together, the data demonstrate evidence of treatment effect with continuous improvement observed 12 weeks following the last study dose. There was no effect on key secondary endpoints, including actual recovery of visual function.

These data are the first evidence of functional remyelination in patients treated with anti-LINGO-1, and justify further study in the ongoing SYNERGY trial, in which 396 subjects with active RRMS or SPMS will be randomized to intravenous (IV) infusions of this experimental medication or placebo. All subjects will also receive once-weekly injections of Avonex. Results will provide clinical information about this drug's efficacy for neuroprotection or repair within the central nervous system (CNS), which consists of the brain, spinal cord, and optic nerves. The results will also address two fundamental questions: 1) Are the effects seen in the optic neuritis study replicable in other areas of the nervous system? And 2) Does this translate to improved function in patients with MS either in the short or long term?

Phenytoin in Acute Optic Neuritis


Phenytoin is an anti-epileptic medication that has been available for decades. It has also been shown to be neuroprotective in experimental models of inflammatory demyelination. A Phase II clinical trial assessed whether phenytoin could be neuroprotective in acute optic neuritis (AON). The study was comprised of 86 people with AON randomized within two weeks of symptom onset to receive either phenytoin (4 mg/kg/day) or placebo for three months. The primary outcome of this AON study was an evaluation of the structure of the retinal nerve fiber layer (RNFL) and macular volume (MV) at six months. Visual function, optic-nerve imaging, and visual evoked potentials were also measured.

Of the original 86 participants, 81 were followed to study end. In these patients, the average adjusted affected eye RNFL thickness at six months was higher in the active group versus placebo, resulting in a 30-percent protective-treatment effect. Adjusted MV (macular volume) showed a 34-percent protective-treatment effect. Vision generally recovered well, with no significant difference in visual outcomes between the treatment groups.

This is an intriguing study that may have broad implications, as it found that the administration of a well-known, relatively safe drug seemed to be neuro-protective in the period directly following optic neuritis. Similar to anti-LINGO-1, further studies will need to be done to clarify whether this effect is translatable to other areas of the nervous system and whether this will, in turn, lead to preservation of neurologic function.

Long-Term Extension Studies

Lemtrada® (alemtuzumab) - Update from the Care MS II Extension for RRMS
Lemtrada is a monoclonal antibody given by IV infusion that was approved by the FDA in 2014 for the treatment of relapsing MS. In the CARE-MS II trial, Lemtrada had superior benefit versus subcutaneous interferon beta-1a, including improved MRI outcomes over two years, in RRMS patients who had relapsed on prior therapy. A total of 393 (92.9 percent) CARE-MS II Lemtrada-treated patients entered the extension study; data are available through four years from the first treatment, and follow-up is ongoing. Through four years, 67.7 percent of patients received only the initial two courses of treatment, 24.2 percent received the initial two treatments plus one additional course, and 7.4 percent received the initial two treatments plus two additional courses. In Year 3 and Year 4, almost 90 percent of patients were free of new gadolinium-enhancing lesions, and two-thirds of patients did not have new T2 lesions.

Aubagio®'s (teriflunomide) 14-Year Extension Study for RRMS



Aubagio is a once-daily oral immunomodulator approved for the treatment of RRMS. In the core Phase II study, patients with relapsing MS were randomized equally to Aubagio 14mg, Aubagio 7mg, or placebo. After completing the 36-week core study, patients could enter the long-term open-label extension. In the extension, patients who were taking one of the two doses of Aubagio continued on their same therapy; those previously treated with placebo were reallocated in equal numbers to Aubagio 14mg or 7mg.

Of the 179 patients originally randomized, 147 entered the extension study. Including treatment in the core and extension studies, patients received Aubagio for up to 576 weeks (11 years). During the study, annualized relapse rates (ARR) remained low in both groups, and the percentage of patients free from relapse during the extension was greater in the 14-mg group (51.5 percent) versus the 7-mg group (39.5 percent). Patients had minimal increases in EDSS score following up to 528 weeks (more than 10 years) of treatment. No new/unexpected adverse events were identified following long-term Aubagio treatment, and the safety and tolerability profile was consistent with other clinical studies.

Although long-term extension trials are always limited by the fact that patients who are doing well on a particular treatment are more apt to stay on it, this study provides support for the use of Aubagio -- one of the more recently approved therapies -- over the long term. Relapse rates remained low in both treatment groups that were followed up to 12 years, and patients in both groups had minimal progression, similar to what was seen in the Phase III trials.

Data on Treatment Decisions

Anti-JCV Antibody Index in Tysabri® (natalizumab)-Treated Patients


Multiple risk factors are now known for developing Tysabri-associated progressive multifocal leukoencephalopathy (PML), a viral brain infection caused by the JC virus. These risk factors include the presence of anti-JCV antibodies, prior immunosuppressant use, and duration of Tysabri treatment -- especially beyond two years. In previous analyses, the anti-JCV antibody index was able to differentiate the risk of PML in patients who were positive for the anti-JCV antibody, but without a history of immunosuppressant use.

This current analyses involved data from clinical studies and post-marketing sources as of March 2014. Data were available for 101 Tysabri-treated PML patients with blood samples collected six months prior to PML diagnosis. For patients with no history of immunosuppressant use, with anti-JCV antibody index at or below thresholds of 0.9 to 1.5, PML risk was approximately 0.1 to 0.2 per 1,000 patients during the first two years of Tysabri treatment; it ranged from 0.5 to 1.1 per 1,000 patients who had taken Tysabri for more than two years and up to four years; and from 0.6 to 1.4 per 1,000 patients who had taken Tysabri for more than four years and up to six years. For patients with no history of immunosuppressant use with an index greater than 1.5, PML risk was approximately 1.2 per 1,000 patients during the first two years of Tysabri treatment, 8.8 per 1,000 patients between two and four years, and 10.1 per 1,000 patients between four and six years.

Consistent with previous findings, this updated analysis suggests the anti-JCV antibody index may differentiate PML risk in anti-JCV antibody positive patients with no history of immunosuppressant use. Patients with a JC index less than 1.5 maintained a low risk for developing PML over the course of the study, as opposed to those with a high index where the risk was seen to increase greatly over time.


Data on Discontinuing Treatment


Click here to continue reading from Multiple Sclerosis Association website


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Tuesday, June 2, 2015

Effects of cannabis on cognitive function in patients with multiple sclerosis

Abstract

Background:

While neuropsychological deficits have been reported in healthy individuals who use street cannabis, data in patients with multiple sclerosis (MS) are lacking. Given that MS is associated with cognitive deterioration, the aim of this study was to determine the neuropsychological effects of cannabis use in this population.

Methods:

Two groups, each of 25 patients with MS (cannabis users and nonusers), were administered the Minimal Assessment of Cognitive Function in MS battery of neuropsychological tests, the Hospital Anxiety and Depression Scale (HADS), and the Structured Clinical Interview for the DSM-IV Axis I Disorders (SCID-I). Group-matching and regression analysis were used to control for the effects of age, sex, education, premorbid intelligence, disability, and disease course and duration on cognitive function.

Results:

Cannabis users performed significantly more poorly than nonusers on measures of information processing speed, working memory, executive functions, and visuospatial perception. They were also twice as likely as nonusers to be classified as globally cognitively impaired. There were no between-group differences on the HADS measures of depression and anxiety or lifetime SCID-I psychiatric diagnoses.

Conclusion:

This cross-sectional study provides empirical evidence that prolonged use of inhaled or ingested street cannabis in patients with MS is associated with poorer performance on cognitive domains commonly affected in this population. Whatever subjective benefits patients may derive from using street cannabis (e.g., pain and spasticity relief) should be weighed against the associated cognitive side effects.







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A PPMS patient's request

June 1, 2015

Dear Readers,

            My name is Audrey Greenfeld and I have PPMS (primary progressive multiple sclerosis). As anyone with an incurable, chronic disease knows, the out-of-pocket cost of available treatments is prohibitive because the drugs used to fight these conditions are classified as “specialty drugs”. What is perhaps less well known is the fact that current law prohibits Medicare from negotiating directly with drug companies to obtain these medications at a lower cost.

            I was inspired by an Op-Ed piece in the NY Times (May 5, 2015) to finally do something about this. I have begun a campaign to send letters to Congress urging them to pass a budget that includes a provision allowing Medicare to use its formidable clout as the largest single payer of prescription drugs to negotiate for lower prices of specialty drugs on which I and millions of others with serious chronic illnesses depend.  
            It will only take a minute of your time to generate the letter. Here’s how: 
                     1.     Click on this link: http://l.ohsaynation.com/campaign/111
         2.     Click "Send Message," and it will automatically send the message to your   state’s Senators and Congressmen.
3.     Once you click "Send Message" and register, you will have the ability to share to Facebook and email. Please do that!! Share to Facebook and encourage friends to do the same. 

            To be effective, this campaign must be national.  The goal is to send 50,000 letters to Congress in order to get noticed. Please forward this letter to people you know in as many different states as possible. With your help, I believe we can make a difference for millions of Americans.


Thank you so much!
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DEAR READERS:  Please help Audrey with her mission. 
This will take less than 5 minutes and might benefit thousands
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New Chairman Elected to the Multiple Sclerosis Association of America's Board of Directors

CHERRY HILL, N.J., June 2, 2015 /PRNewswire/ -- The Multiple Sclerosis Association of America (MSAA) is pleased to announce that James M. Anderson, Esquire, has been elected as the Chairman of their Board of Directors. Mr. Anderson is an attorney in Mississippi and the Managing Member of Anderson Crawley & Burke, pllc, a law firm headquartered in the Jackson, Mississippi area. He also maintains a second residence in Austin, Texas.
An Honor graduate of the University of Southern Mississippi and a cum laude graduate of the Mississippi College School of Law, Mr. Anderson is active in numerous professional organizations, including MSAA. In addition to Mr. Anderson's legal expertise, he has demonstrated his dedication to MSAA's mission of Improving Lives Today through his volunteer role on the Board of Directors, participating in fundraising initiatives in support of the organization's vital programs. Mr. Anderson has served as a member of MSAA's Board of Directors for five years, and has most recently served as Vice Chairman of the Board of Directors as well as Chairman of the development committee.
Mr. Anderson has carried Martindale Hubbell's highest rating (A-V) for 25 years and has been listed in The Best Lawyers in America since 1995. He was named Lawyer of the Year for 2012 by Best Lawyers in the field of Workers' Compensation – Employers in the Jackson, Mississippi area. Also in 2012, he was named the Lawyer of the Year for Outstanding Lifetime Achievement in the Legal Community by the Mississippi College School of Law.
article link


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Monday, June 1, 2015

MS Social Work Navigator, a Free Community Service in Florida

From:  MS Views and News
Are you in need of a Social Worker? 
If yes, then use our FREE community Service  for those affected by 
Multiple Sclerosis in the State of Florida  
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For those needing a Social Worker, 
Contact Jennifer at:
888-871-1664 or 786-296-8777
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Stu's Views and MS News Presents: An insightful and very honest interview with musician David Osmond, on life, family, career and living with Multiple Sclerosis (MS)

An insightful and very honest interview with musician David Osmond, on life, family, career and living with MS.




May 28, 2015:

Stuart: David, thank you for speaking with us and all you do. Before we begin, I want you to know that both Jill and I both have MS as do many of our board members.

David: And how are you feeling Stuart?

Stuart: I am feeling great, doing many programs, I forget I even have MS! How are you feeling?

David: Good Stuart, You look great!

Stuart : So while we are speaking about our MS , tell me what you felt, prior to being diagnosed, what were your first symptoms of MS, what do you remember prior to being diagnosed?

David: It initially started with eye sight and shortly after that, pain, this burning pain started in my toes and started to move up my whole body, but the eye sight was the very first. In fact I was golfing with my uncle, and the ball was right in front of me, and I couldn’t even see it. It was like static television, it was like I had stared at the sun too long.  I just remember it (the ball) was right in front of me and I kept asking him where it was and he was like, “it’s right there”!

David continues: And then it was a few weeks later on Christmas Eve 2005, I did a show that night and when I went home, I took my shoes off and it was about 2 in the morning, and I turned to Valerie , my wife, my then girlfriend and I remember telling her, I said, “something is wrong”. It was like my feet were being crushed by a steamroller. I had this massive pain that I couldn’t quite explain. It was almost like a Charley horse, like when your foot falls asleep, it was like this combination that wouldn’t go away. I thought, ya know what, I am so tired , I hadn’t had any sleep, I am  going to ride this out. And the next few months that pain started traveling up to my legs and moved all the way up to my chest, and then I started tripping and falling and went into a wheelchair shortly after. And the eye sight challenge that I had was more consistent, almost all the time. And the last thing I was thinking was that it was MS, believe it or not! Still.

Stuart: Do you think it was because of your Dad?

David: My Dad didn’t have any symptoms like this! He has a different form of MS, I have relapsing, he has primary progressive, but he didn’t have any pain. He didn’t have any cognitive challenges, or any issues with his eye sight either. It was strictly his right side, so I just figured it was lack of movement, the fact that I had all these other things, I didn’t even consider it (MS). In fact I thought it was mechanical, I thought I had pinched nerves, I went to a chiropractor, and was doing exercises to help with pinched nerves. I was barking up the wrong tree!

Stuart: Was the pain that you had constant? Do you still live with that pain today?

David: The pain was constant, I still live with the pain, but not to the degree of what it was.

Stuart: With all of these symptoms what led you to a diagnosis?

David: After being in a wheelchair for several months, and after many tests, so many things came back negative, when I finally went  to have the lumbar puncture, the spinal tap, the MRI and all those things,  they came back and said, I remember being there with the radiologist, and him going through the film for the first time.  I could see stuff and I didn’t know what I was looking at, but I knew something was there. He was looking at them, and I could see his face and he looks over slowly me, and he goes. “son, you’ve been through the war”. He said, “it is all over, you have it in your brain, through the spine, there are lesions and it looks like it’s MS.”

Stuart: How old were you at that time?

David: I was 25 when it all began, and 26 diagnosed.

Stuart: And how old are you now?

David: 35

Stuart: How has MS affected your family? What goes on at home these days, what kind of assistance do you receive at home?  Do you need assistance?

David: Thank God I am able to function and do things for myself again, because during that first time, it was pre-engagement, my now wife was taking care of me. If I was alone in a room and I had to go to the restroom, I had to literally fall on the floor and drag myself, or manipulate my legs while holding on to things . And to be able to function now on my own is amazing. I still remember what that feels like, to not be able to do anything.  I do not take a single step for granted ever. I am able to function extremely well. Often my closest friends will say, Oh my gosh, David I totally forgot that you have MS, because the fact that I am doing so well is remarkable. I know that I am so blessed.

Having bounced back this far, and even though I still deal with stuff, I still have crushing pain, it’s not quite as strong as it was, I am having it wright now! It feels like I am being pressed and it is numb. My eyesight is fantastic is great! My hand is moving again, my voice is back, I’m able to do my music.

My bladder is that of a 98 year old guy! (laughs) it is what is, so I learned to pace myself, if I go onstage for an hour and a half, I better not be drinking too much water, even my stamina, to be able to push myself, if I’m even cleaning the garage, or  I’m doing yard work at  home, I can tell. Or if I’m trying to do sports, which I’m not as good as I used to be, I can tell when my body starts to, not shut down, but just it fatigues quickly and if I push sometime too far, I start to look funny walking, I start to look like robocop, it becomes mechanical, because all of a sudden I have 200 lb. weights on my legs. It is shutting down, so if I am on stage, and I start to feel bad, I learn to pace my show, I may sit down with a guitar for a song or two and get back up and them I am good to go for awhile. So I am learning to deal with what I have.

Stuart: When you are on stage, is the Adrenalin so high that you are really not feeling any symptoms?  I know you talk about your leg pain now, but when you are on stage and you are preforming, do you still feel it?

David: Yes, I do. My balance can be off. I have to be very careful as far as where stairs are, where the edge of the stage is, because if I trip and fall, and I have before, I play it off pretty good, but I have had to learn where my parameters are and not go past that, for safety sake.

And you asked how life at home was: Life at home is fantastic. I’m able to play with my kids. They don’t quite understand what it is, they don’t of course understand the science they are so young, 6 and 4, two girls, and then we have our newborn who’s 2 ½ weeks!

Stuart: Congratulations!

David: Thank you, we got our boy! They know that MS is there, we even have some books about MS, and without fail every single night when we have our prayers, my daughter Safron, says, “ and please bless Daddy, and help him with his MS” every single time.

Stuart: Could you please tell us what you find most challenging every day?

David: I would love to do things the way I used to, ya know, I don’t remember what it’s like to do a layup in basketball. I used to be very athletic, and to be able to do simple things that I used to do, It’s just not there anymore. Things like the bladder, that certainly something I have to deal with every second, throughout the night, my sleep patterns aren’t very good because of that. So I learn to deal with that.

Stuart : So moderation is a key issue, that one should know about.

David: Ya, I think so. Trying to balance, and find the activities that work for me now that bring me that same joy. Like, I love to golf, I will do that, and snowboard as much as I can, Not the way that I used to , ya know, I have to stop two or three times down he hill, and just sit down sometimes. And then I say, OK , I’m back , let’s go. But I’m finding as I push myself to that limit , I think I’m improving as I try to get as much core strength. Finding those exercise programs that work for me.

John Schneider is a buddy of mine, and we started doing some basic yoga stuff last year and I’m just not keeping up at all, and it’s embarrassing and humiliating, because I know what I have been through, and he does too. But I think there is this stubbornness in me, I’m a competitor , I want to achieve things and when I can’t , THAT gets frustrating.

Even when it’s the simplest little things, but it humbles me as well. And I have to just accept it and realize, this is what I can do, and what I can do I am going to be the best at that. So even if it is just stretches, little tiny exercises, not the way I used to work out, but as I find that core strength it does help my balance. It helps me do my performances, to be able to be at home and help my wife out. Every day is kind of a new discovery to discover what you can still do.

Then I also find times when I just need to shut it if off and sit, and I will go to my wife and say, “I have to lay down”, I am so sorry, and fatigue will just hit me and I will just crash and it will happen every now again, so you gave to find that time for yourself.

Stuart: What does your average work day look like, how many hours a day?

David: It depends on what project I am working on. Sometimes I do not sleep as much, if I am working with different artists in the studio, and if I have a deadline I have to get done. So I find times when I say, this week, or this next 3 days, I’m going to shut the phone off , I’m not going to go online, and I’m just going to be Daddy. In fact during this pregnancy every time I was home, I was Mr. Mom, I was running the carpool, taking my kids to school, going to the soccer games.

Stuart: That is enough to make anyone fatigued! How do you differentiate between normal fatigue from being a dad and MS fatigue?

David: That’s a good question, I can certainly recognize the MS fatigue, this weight of tiredness, it does not hit me all the time , I usually can go and go , but every now and again, I need to take a break, even a 5 minute power nap. I grew up on the road, I’ve learned to sleep In the most bizarre places, I can bounce back pretty fast.

Stuart: A 12 minute power nap in the afternoons is what I need, once a month, if it happens.

David: I feel like this community from the non-profits like yourself Stuart, to the Pharma, everyone, there is a heart to this unlike anything I have ever seen, and I feel like we drive each other and feed off of each other and it certainly motivates me to keep going and give back as much as I can, because this community has given to me something that I can never repay. Having relapsing MS is one of the best things that has ever happened to me. It’s bizarre to say that , I never  thought I would say that in the beginning, but it has totally changed my perspective on life, I can still sing , write and play, and thank God, and I will do that as long as I can and to the best of my abilities.

Stuart : Exactly

David: I feel like teaming up with my friends here at Novartis is the least I can do, and try to encourage other people, and that’s why I am writing the song, "I Can Do This". And sharing my story, I have learned that it blesses my life , because I meet people like you Stuart, people who share their stories and I learn what people are dealing with and I realize quickly the cards that I’m dealt; man, I’m gonna play this hand the best that I can. We all have stuff MS or not; but I realize that I can do this, I mean it sounds like a catch phrase, but it’s my Mantra.



Jill: You grew up as a child of a Dad with MS, What is it like to have a Dad with MS, what are my kids feeling?

David: That’s is a good question. My Dad was diagnosed in the mid to late 80’s I was probably about 7. But I didn’t see it, he was fine, he was still going on stage to perform and it took years of a slow progression when he finally had to leave the stage. And I was a teenager when he left the stage.  I think because it was a slow progression for him and I saw him always as this invincible guy, this fighter, that never got down, never got depressed, and never got sad, to date I have never once seen my Dad complain about having MS. He put the bar so high, it’s been amazing to watch him and to have a Dad like him has been such a blessing.

As a child, though I do remember as a kid I remember saying prayers, (emotional) asking God if you can take this from my Dad and give it to me. I forgot that I even did that until I got my diagnosis, and I am actually really grateful that I share this with my Dad because I feel him in very ,  I take and now I can recognize if he is having a fatigue moment. Or if he is struggling, we share that bond, that maybe my brothers (I have 7 brothers) might not fully understand. It is a connection that is so much deeper now as a father and son, it’s just amazing. I can just look at home a say (to him), “you’re feeling it , are you ok? And he will say, “I’m good”, it’s hard to explain. My Dad always did it was such grace and strength that he inspired me and he is one of my greatest heroes for that.

Stuart: - Thank You for speaking with us David - 
        and YES, YOU CAN do This!



We want to thank David Osmond and Novartis for making this interview possible.

Interview hosted by Stuart Schlossman and Jill Molberger

Written by Jennifer Falk, MSW, CPHM 05.31.15



Our Voice In Song – A Campaign To Raise Awareness About Relapsing MS


Music artist, singer and songwriter David Osmond was diagnosed with relapsing multiple sclerosis (MS) at the age of 26. Since that time, David has become a vocal advocate for the MS community, sharing his experiences and his music, to help raise awareness of this condition. Read David's story at http://www.ourvoiceinsong.com/info/david-osmond.jsp







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