Pacing for the Cure and Multiple Sclerosis

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What does harness racing and multiple sclerosis have in common? Quite a lot if you are in the Columbus, Ohio, area on Saturday, July 15.  That’s when Pacing for the Cure (PFTC) visits the racetrack at Scioto Downs with a special event with the theme of harness racing. And before I forget to mention it, harness racing is a family event and children are always welcome at Scioto Downs or most other tracks around the country.  An added bonus is the food in the concession stands is always priced at family friendly prices (hotdogs at Scioto are $2 and a bratwurst is $2.50).

 

For a donation of $10 you can join others for a special walk for MS – you can go around the 5/8 mile  track by foot.  You can also meet the drivers and some of the horses as well as participate in a min-session on harness racing. The track area is normally off limits to spectators and the drivers almost always keep to themselves behind the scenes so this really is a special opportunity to be up close and personal.

Pacing for the Cure is also offering a $25 level, which gets you everything at the $10 level plus a $15 credit to use at the Patio for food (reservations strongly suggested).  The top donation of $40 gets all of the #10 benefits PLUS a $30 credit for food in the Clubhouse restaurant (reservations are required). The organizers will also have items to raffle/auction at the event, including a hotel stay and a signed jersey from Sergei Bobrovsky, goalie for the Columbus Bluejackets NHL team.

 

 

The is the 2nd year Scioto Downs has worked with PFTC and last year was also the organization’s second year during which they have quickly formed a network of tracks, owners, trainers and drivers to support multiple sclerosis.  PFTC is a registered non-profit organization, and money raised is split between research and helping individuals with MS medical costs or mobility equipment like scooters or wheelchairs.

The registration page is a bit awkward/difficult to find on their site, so here is a quick link to register – on this page  Scioto Downs Pacing for the Cure. select the DONATE button

 

To register click on the DONATE button you will find on the page http://www.pacingforthecure.org/donations/

Who is Pacing for the Cure?

PTFC was started by Janine and Jeff, who both have close relatives with MS, Jeff’s dad, Bill G has been living with MS for 30 years and Janine’s sister  is more recently diagnosed.  Janine and Jeff both work in healthcare and are well familiar with MS and the strain it can put on family and resources.  They have always been a horse loving family and dabbled a bit in racing horses.

When Jeff saw an upcoming sale with a horse named Mr. Bill G. he knew immediately he wanted that horse.   “We have a good race horse, we don’t need a lot of them to have fun and one is enough.  He has a nice personality.  We’ve had a trainer look at him and we are starting training him now,” said Jeff about Mr. Bill G the horse, but I imagine they also say equally nice things about the first Mr. Bill G.

One thing led to another and Jeff and Janine thought the harness racing community might be supportive of MS causes, and they haven’t been disappointed.  Drivers across the country are donating $1 to PFTC each time they win a race, which can add up to a lot of money over the racing season. PFTC hosted a dinner gala at the Harrisburg yearling auction, and has held other events.  Breeders, owners and drivers are helping grow the PFTC network.  You can find out more about this organization on their website Pacing for the Cure.

This is their second walk for MS this year – the first was at the Meadowlands, East Rutherford, New Jersey, and had over 100 people walk the racetrack.  PFTC also plans to host midwest MS events at Red Mile, Lexington, Kentucky, and Hoosier Park, Anderson, Indiana. Jeff said they plan to go everywhere they can in the US to grow Pacing for the Cure. With the help of the entire harness racing community which is demonstrating real excitement toward being involved for MS, Jeff says PFTC “has already grown beyond belief and our expectations.”

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On a personal note, our daughter Kristin is very much into harness racing, and has started her own blog Pony Power Plus where she shares insights on the horses, drivers and handicapping a race. Be sure to check out her story on Pacing for the Cure and her other articles.  If you come to Scioto Downs on July 15, be sure to look for me around the registration area and introduce yourself.

HealtheVoices ’17: Together We’re Better

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Over 100 health advocates gathered recently in Chicago for HealtheVoices17, a conference sponsored by Janssen US, a division of Johnson and Johnson.  Through a competitive process, each of us submitted our application and a video or blog, talking about what we hoped to gain by being with this group.

The MS group, minus Nicole Lemelle.

It is worth noting that Janssen does not have a presence in the multiple sclerosis market, yet there were five MS bloggers in attendance and it’s always great to spend time with Lisa Dasis, Yvonne Desousa, Nicole Lemelle, and Dave Bexfield.  It was an open event, and although there were many people who benefit from the work of Janssen, there are a good number of us who didn’t have a direct connection to their pharmaceutical pipeline.

 

Why Attend?

For me it was quite simple – I live and write in the world of multiple sclerosis, and I know that many people who have MS also have other conditions, also known as comorbidities.  I hoped that I could learn more and discover ways to bridge our conversations to include these other health concerns. I was also hoping to find new ways to relay my message that might better resonate with others.

Who is Nicole Lemelle with now? It’s Yvonne Desousa and me!

HealtheVoices17 focused on giving us the tools to better connect our messages into our communities and beyond. There were professional presentations from YouTube, Facebook, and some big name health information websites, as well as talks from fellow advocates. I am pretty much stuck on my relationship with my computer keyboard and the ‘printed word’ of blogging, but I now know that many of you would prefer to see a video or animation to tell my story. I may give it a try, and have even bought a few little pieces of support equipment needed to do this easier, but I am still very much a fan of the written word.

There was plenty of time during meals and breaks to talk with others and learn more. High level executives from Janssen and J&J attended the sessions and meals, and appeared sincere in their questions about who we are and what we do. Janssen has a large presence in treating Types I and II diabetes, HIV, psoriasis and inflammatory bowel disease, so many of the people at HealtheVoices17 were representing those communities.

Johnson & Johnson is so committed to helping us with advocacy needs, a donation of $30,000 was made to the HealtheVoices Impact Fund, a newly formed foundation.  You don’t have to be a HeatheVoice participant to apply for these funds but you do have to be speedy because the deadline is coming up soon (June15).

We’re More Alike Than Different

The labels of our diseases quickly fell to the side and we slipped into just being a group of dedicated healthcare advocates, as opposed to a person with MS, psoriasis, prostate cancer, mental health or any of the many other conditions represented. One theme that quickly became clear is these are passionate people who do this because they genuinely care and believe they can make a difference. I know I am passionate and would be disappointed to think that no one has been helped by my words.

Who else met Nicole? Why it’s ActiveMSer Dave Bexfield.

The idea of an ‘all expense paid’ trip to Chicago might sound glamorous, but it is physically demanding and means more time away from our homes and family.  We went because we care and we want to try harder and do better for the people we connect with regularly. Part of that requires us to not be content with what we are doing now, but to grow, and the HealtheVoices17 conference was the perfect atmosphere, supported by people who are on the same journey. Note: all of my expenses were paid by Janssen US, but all of the ideas and opinions here and elsewhere are always my own and at now time have they suggested any editorial content to write about.

Advocacy Challenges

I gained renewed enthusiasm and fresh ideas to put into practice for my ‘work’ in healthcare advocacy but making these new connections, sharing stories of our success and challenges, was the best pay out of all. In case you don’t already know this – being an advocate while dealing with our own personal health challenges is a tough task at times.  It is mentally demanding and often physically exhausting.  There is a great need for accurate information and shared experiences, and as advocates we work continuously to connect with our communities.  It is often a thankless task, there aren’t enough awards or recognition given for this devotion of service to others.  HealtheVoices17 was an acknowledgment and a small way to give back to my advocacy peers.

A composite view of 105 passionate advocates at opening session

 

I learned more about the sponsor – Johnson & Johnson has a long history in American healthcare.  I celebrated the success stories of the amazing advocates who were in attendance. And I came away with a renewed passion to speak up and reach out for my community. Gatherings like HealtheVoices17 that focus on empowering advocates with tools, resources and connections without asking for anything in return are rare, and I am truly honored to have been chosen to attend.

Be well,

Laura

 

PS – there have been some great things written about this conference, and I share just a few links here – I hope you will take the time to read about their experiences as well.

Dave BexfieldCollective Voices, Dropping the Mic

 Robert Oliver:   ATTENDING #HEALTHEVOICES2017: A CONFERENCE LIKE NO OTHER.

Luke EscombeNo-one wants to hear you talk about your chronic illness” – what I learned at HealthEvoices 2017

Howard Change: My Surprising Takeaways from the HealtheVoices Conference

Yvonne DeSousaHealthe Voice Abound

LTD and Me

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It was a most curious conversation I had the other day with the latest ‘expert’ at the company that is handling my long-term disability (LTD) claim.  It was a new case worker and first we had to clear the usual hurdles and introductions.  Then the conversation went pretty much like this-

Expert: So, how are you doing?

Me: Ok, there are good days and some not so good days, (I reply, trying to be pleasant rather than dump on her about the latest physical woes.)

Expert: That means you are better?

Me: Umm, do you know anything about multiple sclerosis? (Trying to be respectful)

Expert: Well I have read some and I know it is a disease that comes and goes with relapses.

Me: well not exactly.  Yes, it has periods of relapses and remissions but MS never goes away.

Expert: I know there isn’t a cure for MS but people do get better, right?

Me: unfortunately that’s not quite how it works and I’m happy to send you some information if you would like to learn more. (I’m wondering, what has she been reading?)

I was hoping to move the conversation on before I became entirely frustrated and said inappropriate things, after all this is the person determining if my LTD continues or not. I understand their job is to get people back to work, regardless of what that might take and what kind of work it would be.  I try to be patient with her questions because I know she is just doing her job.  But each time I am on one of the telephone reviews, when I get asked about the use of my hands, I picture myself being trained to flip burgers; never mind that I have no stamina to stand for long periods of time.  They no longer want to ask about my walking. Or my fatigue.  Or any of the other things that factored in to my stopping full-time employment.

That’s ok, I guess – they are doing their job, and since I can no longer do mine their job is to get me onto Social Security Disability Income (SSDI) and out of their company’s pockets.

Expert: So I see you applied for SSDI , how did that go?

Me: I have other income sources and do not qualify for SSDI based on my income.

Expert: I have lots of people who are making $100,000 or even $200,000 a year and still get SSDI.  How much you make doesn’t matter.

Me: (all efforts to play nice end here) – uh, you might want to check that again because there is a limit and no one making $100,000 a year will get SSDI.  SSDI is meant to be a backup for people who have no or little income.

Expert: I am sure you can make that much and still get it.

Me: I would again urge you to check this because I am certain. If you have people making $100,000 a year and still getting SSDI, I would like to know how.

Expert: I guess I should look into this.

Me: (I won’t print what i was thinking about this comment!).

And the conversation pretty much ended there. I anticipate their next review call  will be in a few short months, when I can again expect to answer ‘are you better now?’  If it’s the same case worker, I hope the expert will have done some homework about both SSDI and MS.

 

 

 

Valuing Advocacy and MS Patient ‘Experts’

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We all know the value of advocacy – it is the work that brings about change.  In the world of multiple sclerosis there are advocates everywhere, connecting the community of people affected with this disease with the  leaders who shape policy,  run non-profit organizations dedicated to improving quality of life, improving delivery medical care, and those who develop medical products.  It’s not unusual to be asked as an advocate to share my thoughts on an issue and I am more than happy to do so; I’ve even been known to do this without having been asked. Part of the role of an advocate is to identify issues and speak up for change where needed. This scenario pretty much describes every chronic disease community –advocates  are the go to people when others want to better understand the needs.

MS Advocates are also often viewed as patient experts and  contacted by the pharmaceutical industry for input on product design, especially in reviewing the marketing material for the multiple sclerosis drugs they own the rights to.  Successful bloggers and community leaders make particularly good marketing experts, being in the position where we are actively engaged with others who also are affected by MS, and we might be able to provide user insight not available in other ways.

A fellow blogger recently emailed several of us who have done projects with various MS drug companies in the past, wondering why several of  these companies, that make billions of dollars selling their drugs to us, are not willing to pay consultant fees for our ideas and more importantly, our time.  It’s a great question and one I would like to pose publicly.

The usual scenario for a project with one of the drug companies will be after the initial contact, we are provided with background material to read so we can think in advance about the topic and product.  Then we travel, sometimes long distances and always the day before the larger gathering, to meet in person at an always nice hotel, with very good food and comfortable beds.   I will agree that no money is spared in the travel accomodations. We spend an entire day, starting early and concluding in the late afternoon, listening to their presentations and providing feedback.  Then we either travel home that evening or head back the next day.  This is not a vacation and rarely is there time available to see any sights or enjoy the local environment. I always pack my swimsuit with the illusion that I will actually use the hotel’s pool, but that has yet to happen.  We arrive, meet, and then go home pretty much exhausted and spend another few days recovering. An in-person meeting easily consumes three full days, which is a huge commitment of time.

We do get the chance to spend time in person with like-minded advocates, and that is how I have finally been able to meet and spend time with people who I have known via their advocacy work for a much longer period of time. This is one big perk for saying yes to attending one of these meetings, but it might also be the only perk.

Why would we do this without any other type of compensation, such as a consultant fee or honorarium?  It sure isn’t for the frequent flyer miles.  And they aren’t giving us a year’s supply of their drugs for free.  Doing work pro bono for non-profit organizations is not part of this discussion – we’re all more than happy to support their work in any way possible.  Again, I have to note that I want to advance the needs of the MS community and I give consistently and often excessively of my time and talents for free to non-profit organizations; the donation of my time is worth way  more to them than if I were to open my wallet and give my small amount of money. All of my fellow advocates do the same, if not more.

What I’m particularly interested in understanding better is why when I am attending  some of these meetings, every person in the room is being paid either as an employee of the host organization or a member of the firm that found us and organized the meeting EXCEPT for the MS advocates?

Focus groups that are convened for online or telephone discussions are routinely offered compensation either as a small honorarium which is usually in the form of an Amazon gift card in a token amount; it is a nice gesture to show that our knowledge and time have value and is appreciated.

The looming question is about the differences among the various companies regarding these in-person meetings, with some who do offer compensation for our time while others insist it is against the law to give us any monetary compensation. In my thinking, the companies who do not consider  our worth and fail to compensate us are minimizing the value of the patient advocate and continue to perpetuate a system that takes advantage of our trust and good will. 

Compensation from the pharmaceutical companies who ask for our time and knowledge should be a standard part of this process and not a capriciously applied interpretation of rules and regulations. Of course this is solely my thoughts and I would welcome an open discussion with other advocates and with pharmaceutical representatives.  Please share your thoughts here or in our Facebook group Multiple Sclerosis Bloggers and Writers;  perhaps we can  then come to an understanding of expectations.

 

Be well,

Laura

 

 

 

 

Shingles belong on the roof, not my body!

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When  I woke Saturday morning in the king-sized bed at the Marriott, I just assumed the ache in my left side was from sitting or sleeping in the wrong position and it would go away.  It had been a busy few days at the Annual Consortium for MS Centers meeting and I recognized my body was feeling the strain of the long days. I hopped the plane and made it home, with no more pain from my side but later that evening, it again began to ache and I commented that it must be a muscle strain.

Sunday I woke still sore, but not too bad and certainly there was nothing that gave me a clue it might be something else.  It wasn’t until well after midnight and just before dawn I woke in such extreme pain I had my husband take me to the ER.

The kind ER staff took my vitals, gave me a hefty injection of morphine for the pain, wheeled me down the hall for a quick CT to look for kidney stones or other obstructions, and then came to the decision I had the shingles. There were three tiny red rash patches on my left side – that was all – and the ER doc was confident of her diagnosis.  I thanked them all for their prompt attention and kindness, their painkillers, and my prescriptions, and went home.  A few hours later the small rash had spread to larger areas and I had to agree with the doctor… I have the shingles.  AKA Herpes Zoster, a close cousin to the Chicken Pox virus varicella-zoster. The advertising theme of one manufacturers  at the conference had read ‘In MS, it starts with a flicker’ but I don’t think this is what they meant.

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On the drive home I sent a text to my neurologist inquiring about the connection between shingles and my MS drug, natalizumab (Tysabri). The prompt reply said even though my immune system may be somewhat compromised by this multiple sclerosis drug, it was more likely the hectic pace I had been keeping at the conference I was attending and the after effects of major foot surgery was what made me susceptible to this viral infection. The irony is I was at a conference about MS and how to better treat people affected by the disease, and at no time did I hear shingles mentioned; but during my time there I must have been in contact with someone with an active case of one of the Zosters – either chicken pox or herpes.

I’ve considered the shingles vaccine in the  past because I have reached that recommended age, but had not pursued it because live vaccines are not ordinarily recommended for people with multiple sclerosis. Had I known what this outbreak would be like and the pain involved,  I would have gambled on the MS having a relapse and taken the shot as soon as I was eligible.  The nurse tells me once my shingles have cleared I should consider getting the vaccine and I replied there was nothing to think over – I will take that shot if it means avoiding future episodes of the shingles.

 

In the meantime, all I can do is wait this out. I was put on an anti-viral medication thanks to the intuitive ER doctor, and that may have cut the duration of this outbreak, but I still can’t stand to have things touch my body.  Consequently, I have spent the week in a loose-fitting nightgown and tried to move as little as necessary. I’ve cancelled all plans, including another trip next week and am happy to sit still and do nothing. I understand it will be too hot to go out this weekend anyway so I might try to make the most of this and sleep and write my way through the days ahead.

If you are eligible for the shingles vaccine and have not yet had it, do yourself the favor and get it!  The temporary discomfort to your body for the injection and your wallet for the cost can’t compare to the pain and inconvenience of an active case of the shingles.

 

 

 

 

 

World MS Day 2016 and OrangeMoji’s

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World MS Day is May 25 and the Multiple Sclerosis Foundation (MSF) with support from Novartis is challenging us to bring out our best orange for the day – as in a real orange that we have turned into an OrangeMoji to bring awareness to MS.

ripe orange with leaves on white background

I have to go on record that  even though I love the color orange I still wish our official awareness color was one that could be rhymed.  Songwriters and poets have yet to come up with anything that rhymes with orange so instead we have to settle for the thought that a picture is worth a thousand words.   Keep thinking about it and let me know if you come up with a word or two.IMG_1886Interpreters say the dream of an orange is a symbol of health and the fulfillment of wishes.  Now they don’t say what kind of health that may be but perhaps someday as we all wish for, there will be a cure for MS and we will all have good health.  If this is the case, we might want to dream more about oranges but I think dreams about unicorns and rainbows would be even better since they signify hope and happy endings.

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MSF invites everyone to create their own OrangeMoji that will convey the ‘I can do this!’ message of the song with the same name done by David Osmond. Please click on the link and have a listen – you might be surprised at the power of his message.  David also has MS and is a celebrity spokesperson for the Novartis company. People who submit an OrangeMoji will be eligible to win a chance to attend a listening party with David. So it’s simple – take an orange and some markers or other materials and make your own OrangeMoji, take a picture of it, and submit it online.  Your OrangeMoji might even appear in the next music video.

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The message could show you’re not going to take what MS is dishing out ….IMG_1878

Or how your everyday attitude of laughing in the face of MS gets you through….IMG_1881

As David Osmond’s lyrics for I Can Do This remind us –

I’ve rehearsed a thousand times

I played it all out in my mind

And now it’s time to go, time to give the world the show

That I – I’ve been dreaming all my life

 

The day has come – I’m gonna give myself a chance

The fear is gone – This time I’m gettin’ off the fence

I’m moving on – The wait is over

Yeah, it’s my life, This is my life!

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Whether you make an OrangeMoji or do something else, please be sure to join me and the 2.2+ million people in the world who have multiple sclerosis,  as we observe World MS Day 2016.  Whatever your OrangeMoji might look like – remember when you peel it open we are all the same and hoping for increased awareness to finding an end to MS for us and future generations.

be well,

Laura

 

Consortium of MS Centers Meeting Roundup

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Late May I had the good fortune of attending the annual Consortium of MS Centers meeting, held this year in Indianapolis.  I am still working on articles from the vast wealth of information I gathered there, but want to share what has been posted on MultipleSclerosis.net.  Following is an index and brief cut from each of the topics; I hope there is something here that catches your attention and you’ll want to read more.

 

Multiple Sclerosis & Aging

More than once I’ve wondered to myself and questioned others about the aging population of people with MS and what adjustments to our care might need to be made. The current state of medical treatments make it possible to live longer, and although that is a very good thing it also complicates our medical care.

http://multiplesclerosis.net/living-with-ms/aging/

 

Challenges of Progressive MS Research

How well do we understand progressive MS today? was the closing keynote address for the Consortium of MS Centers annual meeting, given by Alan Thompson, MD. He is a leading authority on progressive multiple sclerosis and Dr. Thompson  is on the faculty of Brain Sciences, University College London, and serves in high level positions of the boards of MS international Federation, the International Progressive MS Alliances, and the National Multiple Sclerosis Association. He serves as the editor-in –chief for Multiple Sclerosis Journal.

I had the opportunity to ask Dr. Thompson at an advance press briefing if he could identify what was the driving force behind the recent initiatives to find answers about progressive MS. For quite some time the majority of the research and attention has been focused on Relapsing Remitting MS (RRMS), according to Dr. Thompson, and he strongly expressed the research community should be ashamed of themselves for waiting so long to take a harder look at progressive forms. He said part of the push for progressive MS research is because the MS patient community has been vocal about the need.

http://multiplesclerosis.net/living-with-ms/challenges-of-progressive-ms-research/

 

 

Meet the Professor: Gavin Giovanonni, MD

In almost every area of endeavor there are those people who do work that rises above the rest, making them stars even among others who also accomplish great things. There are a lot of people who write blogs about MS and there are a number of them who shine above the rest with really stellar work. But then there are the superstars – those few writers who can be trusted to always get the information correct and add their own touch, making their blog not only enjoyable to read but also crammed full of information. Gavin Giovanonni, MD., is one of those superstars of the MS blogosphere.

http://multiplesclerosis.net/living-with-ms/meet-the-professor-gavin-giovanonni-md/

 

 

MS Wellness: Body, Mind and Spirit

It was late Friday afternoon at the annual meeting for the Consortium for MS Centers and after three days of intense science and medical discussions, many of which involved words I can barely spell let alone understand, my brain was ready for a break. I scanned the program schedule again and came down to two final options for a happy hour presentation – after all it was after 4:00 PM on Friday.

http://multiplesclerosis.net/living-with-ms/wellness-body-mind-and-spirit/

 

Where to Turn: MS Drugs, Babies and Assistance

Do you know about MotherToBaby or the Assistance Fund? Don’t feel alone if you don’t, because I didn’t either until recently when I attended the annual meeting of the Consortium for MS Centers….

http://multiplesclerosis.net/living-with-ms/where-to-turn-drugs-babies-and-assistance/

 

Lemtrada: Some Facts

The newest multiple sclerosis drug approved in 2014 was alemtuzumab, trade name Lemtrada.  One of the early morning (7:00 AM) presentations I attended at the recent Consortium for MS Centers annual meeting,Independently Supported Symposium (#7): Management of Alemtuzumab Infusions for Patients with Relapsing MS, was sponsored by the drug’s manufacturer, Genzyme, and was for people who work in clinics that administer or plan to give Lemtrada. The presentation was full of facts and an opportunity for me to learn more about the minute details of Lemtrada, since it is still in its infancy of use here in the US.

http://multiplesclerosis.net/living-with-ms/lemtrada-some-facts/

 

MS, Cannabis & Cognitive Function

Anthony Feinstein, MD, PhD. gave the lecture – MS, Cannabis and Cognitive Dysfunction: Insights from Brain Imaging, to a standing-room only crowd at the opening presentation for the Consortium for MS Centers annual meeting in Indianapolis. He is in the Department of Psychiatry at the University of Toronto, and his research into this topic was funded by the National MS Society of Canada.

Dr. Feinstein began by tracing the roots of the drug back to the 9th century and took his audience through a timeline of cannabis use and its forms. One form was in the 19th century here in the US when it was combined with morphine and capsicum to be used as a pain killer.

http://multiplesclerosis.net/living-with-ms/cannabis-cognitive-function/

 

 

Treating Diverse Populations with MS

Practical Strategies for Improving Outcomes in Diverse MS Populations was the Symposium that started the second day of the annual Consortium for MS Centers meeting in Indianapolis. This is a topic of special interest to many people because of the differences in how people react to treatment, depending on their ethnic and genetic background. It was a panel presentation and these are the topics of each presenter and my summation of their text and comments.

http://multiplesclerosis.net/living-with-ms/treating-diversity/

 

Marijuana Use by MS Status and Disability

Do you participate in NARCOMS surveys?  That would be the North American Committee on Multiple Sclerosis and their patient data surveys that are generated twice a year and is a longitudinal study tracking our MS and various symptoms and progression. In addition to their regular surveys, they will on occasion conduct special targeted surveys and such was the case with a survey regarding attitudes toward marijuana use among people with MS. Stacey Cofield, PhD, is the lead investigator for this project and I had the opportunity to talk with her about the survey results at the Consortium for MS Centers annual meeting, held in Indianapolis.

The survey was created as a response to NARCOMS participants’ suggestion that they include questions about medical marijuana use in their surveys.

http://multiplesclerosis.net/living-with-ms/marijuana-use-by-ms-status-and-disability

 

MS & Comorbidities

Comorbidity seems to be the word of the day lately in all types of multiple sclerosis discussions. Medical conversation, reviews and scientific manuscripts, link many other chronic conditions such as obesity, depression,  rheumatoid arthritis and type 2 diabetes to multiple sclerosis as a comorbid companion.

Comorbidity –  the word sits with me like a newly introduced phrase that is popular at the moment because I keep hearing and reading it everywhere, and when I went looking for the root meaning of the word I stumbled upon this handy little tool from Google books which charts the use of words in books over a period of time. Not surprising to me, the word comorbidity does not even appear in a book until the 1980’s, but has taken off in use since that time.1

http://multiplesclerosis.net/living-with-ms/ms-comorbidities

 

 

 

 

 

iConquer MS needs you!

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Are you Ready to Help Conquer Multiple Sclerosis?

 

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The Accelerated Cure Project (ACP), a non-profit organization based in Boston, was founded by a person living with MS, and its sole focus has been to facilitate research that will lead to a cure for Multiple Sclerosis.  ACP has undertaken a number of exciting projects to work toward this goal, but none of them match the size of this one….  you and I have a central place to share our healthcare data and research ideas , through iConquerMS™.

This project is funded by the Patient Centered Outcomes Research  Institute (PCORI), which gathers its money from the fee paid by all of us on our private health insurance premiums.  This amount is only $1 per year per insured person, but spread across the entire US population, that adds up to some very impressive numbers.   Even more impressive is this organization is charged with finding ways to shift to patient centered health care and research.

In keeping with the patient centered approach, the majority of people guiding the development of iConquerMS™ are like you and me – people living with multiple sclerosis. Many of the leaders within iConquerMS™ are names familiar to you from being a part of the online MultipleSclerosis community, including Lisa EmrichStephanie ButlerChristie German, Dave Bexfield and Marc Stecker.

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MS research facilities and MS clinics are also represented through the presence of doctors and lead research scientists on the various committees.   Think about this for a minute – I would wager that iConquerMS™ is the first time all of these key players and organizations have been gathered into one place, a place where you and I as people living with multiple sclerosis are leading the discussion and developing the research.  And we are governing the project.

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There is so much more I can tell you about iConquerMS™ , PCORI and my involvement with both, but I want to get on to something more important – let’s talk about you.  What can you do to get involved?  Quite simply, you begin when you Join iConquerMS™ . The details of this project, the sponsors, its use and the informed consent information is on the iCnquerMS™ website, but let me share a brief overview of what you can expect to find –

 

iCMS 4

You will be asked to complete a few questionnaires that will look familiar to you  – especially the MS Neuro Quality of Life (MSNQoL) survey which most of us do regularly for our doctors or if we participate in NARCOMS. This survey is a standard tool in all types of MS studies and is a critical piece of information even though it might appear to be pretty useless.  The information from my own MSNQoL by itself means little except for me and my doctor, but if you have this completed by 20,000 people with MS, it gives a panoramic view of our quality of life.  iConquerMS™ needs this type of big data to look for our cure.

 

Stop and think about BIG DATA and what it will look like when we have the electronic medical records of 20,000 people who live with MS and the information that researchers will be able to glean from this big picture.

 

The next piece of iConquerMS™ is what I get most excited about – we have an opportunity to suggest research topics.  How many times have you wondered about your MS and a particular question comes to mind and you think it would be nice if someone looked into finding an answer?  We want your research ideas – one of us might have just the right question that unlocks one of the many mysteries of multiple sclerosis.  This word cloud is made from the research ideas already submitted –

iCMS 5

We are asking a lot from everyone to make this giant step to participate by sharing your health data, and investing your time in helping to build our Big Data picture for research.  But doesn’t MS ask a lot from us EVERYDAY?

Please join me at iConquerMS.org   – share the excitement and power of patient centered research!

wishing you well,

Laura

 

 

 

 

June Posts on MSnet

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June was another busy month of writing for MultipleSclerosis.net, especially with my coverage of the Consortium for MS Centers annual meeting, held the last week of May. Here’s a peek and links of what I contributed last month.  I hope you see something you want to read more about and even share with others to read.  best, Laura

 

By Laura Kolaczkowski—June 1, 2015

More than once I’ve wondered to myself and questioned others about the aging population of people withMS and what adjustments to our care might need to be made. The current state of medical treatments make it possible to live longer, and although that is a very good thing it also complicates our medical care.

 

By Laura Kolaczkowski—June 2, 2015

How well do we understand progressive MS today? was the closing keynote address for the Consortium of MS Centers annual meeting, given by Alan Thompson, MD. He is a leading authority on progressive multiple sclerosis and Dr. Thompson  is on the faculty of Brain Sciences, University College London, and serves in high level positions of the boards of MS international Federation, the International Progressive MS Alliances, and the National Multiple Sclerosis Association. He serves as the editor-in –chief for Multiple Sclerosis Journal

 

Preparing for your Neurologist Appointment

By Laura Kolaczkowski—June 3, 2015

Everyone gets those reminder telephone calls before their appointment about what time to get there, to bring the most recent insurance card and copay, and of course the list of drugs you are taking. Those are standards for every medical appointment, but what else can you do to make the most of your time? No matter how much or how little time you have with your neurologist, once the exam door is closed you want to make the most of it.

 

By Laura Kolaczkowski—June 5, 2015

The newest multiple sclerosis drug approved in 2014 was alemtuzumab, trade name Lemtrada.  One of the early morning (7:00 AM) presentations I attended at the recent Consortium for MS Centers annual meeting,Independently Supported Symposium (#7): Management of Alemtuzumab Infusions for Patients with Relapsing MS, was sponsored by the drug’s manufacturer, Genzyme, and was for people who work in clinics that administer or plan to give Lemtrada. The presentation was full of facts and an opportunity for me to learn more about the minute details of Lemtrada, since it is still in its infancy of use here in the US.

The talk was given by Christine Cain, MSN, Lori Mayer, MD, and Colleen Miller, MSN, and my article here is a consolidation of their combined comments. The details of the drug, its administration and complications are all factors to be considered by a person before consenting to Lemtrada therapy, and that is the focus of my article here.

 

By Laura Kolaczkowski—June 9, 2015

I can’t agree more with Cathy Chester and her enthusiasm about the recent meetings in Indianapolis for the Consortium for MS Centers annual meeting.  There were over 2,000 health allied professionals in attendance, all there to learn more about improving care for people with Multiple Sclerosis.

Unlike the annual Academy of American Neurology meetings where there seem to always be headline grabbing presentations announcing the latest treatments or breakthroughs in the labs, this meet is much more blue collar.  The people there rolled up their sleeves and got down to the nitty gritty of MS.

 

By Laura Kolaczkowski—June 10, 2015

Comorbidity seems to be the word of the day lately in all types of multiple sclerosis discussions. Medical conversation, reviews and scientific manuscripts, link many other chronic conditions such as obesity,depression, rheumatoid arthritis and type 2 diabetes to multiple sclerosis as a comorbid companion.

Comorbidity –  the word sits with me like a newly introduced phrase that is popular at the moment because I keep hearing and reading it everywhere, and when I went looking for the root meaning of the word I stumbled upon this handy little tool from Google books which charts the use of words in books over a period of time. Not surprising to me, the word comorbidity does not even appear in a book until the 1980’s, but has taken off in use since that time.1

 

By Laura Kolaczkowski—June 11, 2015

In almost every area of endeavor there are those people who do work that rises above the rest, making them stars even among others who also accomplish great things. There are a lot of people who write blogs aboutMS and there are a number of them who shine above the rest with really stellar work. But then there are the superstars – those few writers who can be trusted to always get the information correct and add their own touch, making their blog not only enjoyable to read but also crammed full of information. Gavin Giovanonni, MD., is one of those superstars of the MS blogosphere.

 

By Laura Kolaczkowski—June 15, 2015

Anthony Feinstein, MD, PhD. gave the lecture – MS, Cannabis and Cognitive Dysfunction: Insights from Brain Imaging, to a standing-room only crowd at the opening presentation for the Consortium for MS Centers annual meeting in Indianapolis. He is in the Department of Psychiatry at the University of Toronto, and his research into this topic was funded by the National MS Society of Canada.

Dr. Feinstein began by tracing the roots of the drug back to the 9th century and took his audience through a timeline of cannabis use and its forms. One form was in the 19th century here in the US when it was combined with morphine and capsicum to be used as a pain killer. Well into the 20th century, cannabis was recognized and used by the medical field for its analgesic properties. “Cannabis has a long powerful lineage of medicinal use,” Dr. Feinstein said.

 

By Laura Kolaczkowski—June 15, 2015

Do you participate in NARCOMS surveys?  That would be the North American Committee on Multiple Sclerosis and their patient data surveys that are generated twice a year and is a longitudinal study tracking our MS and various symptoms and progression. In addition to their regular surveys, they will on occasion conduct special targeted surveys and such was the case with a survey regarding attitudes toward marijuanause among people with MS. Stacey Cofield, PhD, is the lead investigator for this project and I had the opportunity to talk with her about the survey results at the Consortium for MS Centers annual meeting, held in Indianapolis.

The survey was created as a response to NARCOMS participants’ suggestion that they include questions about medical marijuana use in their surveys.  The information entered through the NARCOMS registry is linked to our personal records, and to address the privacy concerns about gathering information on a drug that is still illegal in many parts of the US, they asked the questions via SurveyMonkey, an online survey tool. I am a member of NARCOMS and did complete this survey in 2014.

By Laura Kolaczkowski—June 21, 2015

Practical Strategies for Improving Outcomes in Diverse MS Populations was the Symposium that started the second day of the annual Consortium for MS Centers meeting in Indianapolis. This is a topic of special interest to many people because of the differences in how people react to treatment, depending on their ethnic and genetic background. It was a panel presentation and these are the topics of each presenter and my summation of their text and comments.

 

By Laura Kolaczkowski—June 22, 2015

I’ve done it and the odds are you have, too – many of us have good intentions and when we get our driver’s license we check the box that holds the option to be an organ donor. We want to help and know there are so many people waiting for organ donations to heal their ill and broken bodies.

According to the DonateLife website –

Currently, nearly 124,000 men, women and children are awaiting organ transplants in the United States. For specific numbers visit unos.org.

  • Approximately 77,633 Multicultural Patients*
  • Approximately 2,146 Pediatric Patients*
  • 29,532 Organ Transplants Performed in 2014
  • 14,414 Organ Donors in 2014
  • More than 47,000 corneas were transplanted in 2013
  • More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.

 

By Laura Kolaczkowski—June 25, 2015

Do you know about MotherToBaby or the Assistance Fund? Don’t feel alone if you don’t, because I didn’t either until recently when I attended the annual meeting of the Consortium for MS Centers, a four day event jammed full of seminars, classes, lectures and much more.  There was an exhibit area, which was the showcase presentation point for all of the MS pharmaceutical companies, health care delivery businesses and more.  The familiar non-profit advocacy groups were there as well, including Accelerated Cure Project (iConquerMS™), Multiple Sclerosis Association of America, CanDo MS, MS Foundation and the National Multiple Sclerosis Society. These groups, along with a few others make up the MS Coalition, organized to leverage limited resources and collaborate with each other.

Among these better known MS organizations were a few lesser known non-profit organizations that I was not familiar with and am especially glad I had the opportunity to learn more about two of them that are associated with MS drugs and can share their information with you.