Which Are You:  Yes, No or Sort-of?

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You know about iConquerMS™ right?  You can’t be one of my regular readers and not have read  a mention or two of this initiative and its importance to changing multiple sclerosis research.  We are actively looking for people who live with MS to join us at iConquerMS.org and share their health care information.  If you don’t have MS, we welcome you too in our portal to register as a control.

This health care information will be used by researchers who have been approved by a patient-governed research committee to answer research questions that have been posed by the members of iConquerMS™. We’re looking to do research that truly matters to people living with MS and can make a difference.

The great news is our funding for iConquerMS(TM) has been extended for another three years, into Phase 2.  But we are also still working to wrap up the work of Phase 1, which brings me to this question….

Have you joined iConquerMS™?

There are only three possible answers- yes, no or sort-of.

I’ll start with the one that perplexes me – if you said NO, can I ask why not? All the information submitted is de-identified and put together with the information from the other 2,200+ people who have already joined. You can do this from the comfort of your home, and only need access to a computer to help. We need 350 additional enrollees by the end of September, which is the end of Phase 1 and I hope you will be one of them. Please change your answer from NO to a YES, go to iconquerms.org and enroll today. Thank you.

 

If you said SORT OF, that means you signed up but didn’t get everything done.  Maybe you got distracted and forgot to go on and complete the surveys.  Maybe you took a break and got tired.  That’s ok – those surveys are still waiting for you to finish.  We have a percentage number for Phase 1 that requires so many people to complete ALL of the posted surveys.  Please take the time now to visit your account at  iConquerMS.org and finish what you began. We need all of you and your survey answers, and not just a part. Thank you.

 

YES means you are all in, you have completed all of the surveys and have made the commitment to help guide MS research.  Bravo! and I thank you and all of the people associated with iConquerMS™ and multiple sclerosis thank you.  You have followed through on your commitment to find a cure to MS. Can I ask one more thing of you at this time? Have you also shared a piece or two of your Electronic Health Record (EHR) through www.iConquerMS.org?  Our Phase 1 goal has a need for a small number of our participants to upload at least one health record, so that the viability of collecting EHRs may be demonstrated.  This doesn’t have to be complex – it could be as simple as a copy of your latest lab work or your doctor visit summary.

Regardless of whether you answered Yes, No or Sort-of, our work is far from done and we will continue to need your support.  Please do your part today, use the power of your data, and help us Conquer MS.

Be well,

Laura

 

 

July-August Updates

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It’s been another crazy couple months with lots of summer activities, travel and now back to work.  Before it gets any later, I want to share this recap and links to my writings for multiplesclerosis.net from July and August. As usual, I’ve written on a wide range of topics and I hope there is something in here that you will find informative and useful, or at least entertaining.  Of special note, please take the time to read my two part interview with artist Lydiaemily.

be well, Laura

 

MAD about MS: Lydiaemily

By Laura Kolaczkowski—August 22, 2015

Lydiaemily declares it up front – “I definitely am thinking ‘let’s go’, I know the bus is coming. What can I do before the bus gets here.” She lives with Secondary Progressive MS and knows her future might hold a bleak outcome.

After my recent chat with this artist, I can tell you one thing – she is not standing on the corner waiting for the bus to come. You won’t even find her at the bus station sitting in air conditioned chairs waiting. Lydiaemily is out on the streets, spreading the word of multiple sclerosis through her murals being painted on the outdoor building walls of NMSS chapters around the country. Her goal is to paint one for each chapter, and raise awareness about MS.

 

MAD About MS: Lydiaemily (part 2)

By Laura Kolaczkowski—August 25, 2015

This is the second part of my interview with the MS mural artist, Lydiaemily, who is Making a Difference (MAD) About MS. In Part 1, we discuss her work on the MS Mural project and her own life with multiple sclerosis.

 

Florida Nightmare: Wrongly Diagnosed with MS

By Laura Kolaczkowski—August 19, 2015

Perhaps by now you have heard the story of Sean Orr, a physician at Baptist Medical Center, Jacksonville, Florida, who has been exposed for diagnosing people with multiple sclerosis when they really didn’t have it. The story aired on NBC Nightly News, August 18, and is all over social media. The MS Community is shaking their head at this story and many shaken enough to question their own care as well.

 

Weather or not, here I come

By Laura Kolaczkowski—August 16, 2015

So much of our country has seen extreme weather this year and it continues to be unpredictable and in some cases unbearable. How about the winter months where so much of the northern US was buried – literally – in snow? I watched the headlines and chatted with friends in the Boston area through those dark days and wondered how they would continue to function in spite of their weather.

The extreme weather patterns seemed to have shifted and Mother Nature set her site on the Midwest, including my home state of Ohio. Talking with a person this weekend, she had told her friend we have only had rain twice this summer – one time for 11 days and the other for 17 days. She’s not far from the truth. It has rained almost every day since the calendar flipped to June.

 

The Spirit of Louisville

By Laura Kolaczkowski—August 8, 2015

This sounds like the name of a vintage aircraft or even perhaps a drum and bugle corps, but it’s what I see thriving in the multiple sclerosis community in that fine Kentucky town. I had the good fortune to travel to Louisville to be a part of the annual Norton Neuroscience Institute’s Making Connections Neuroscience Expo. This was a large gathering of people living with a variety of neurological disorders, along with speakers and exhibitors. All told, there were over 1,000 people present for this event. I was there to talk about iConquerMS™ as well as staff a booth in the exhibit area with more information about this patient led Multiple Sclerosis initiative. My talk was well received, or at least people appeared to be listening and there were even a few people nodding in agreement with my comments

 

Take Ten: Ways to Make the Day Better

By Laura Kolaczkowski—August 4, 2015

Whether you have multiple sclerosis or not, it is way too easy to get into a routine that seems never ending. Here are my ten ways to take the chance to change the day and make it better.

 

A Closer Look: The National Multiple Sclerosis Society

By Laura Kolaczkowski—August 2, 2015

We’ve heard about Walk MS, Ride MS, Run MS, and the other fundraising functions of the National MS Society (NMSS) but what else do we know? If you are like me, I was a bit fuzzy on the details and went to the top for some answers. Eddie Rauen, President of the Ohio Valley Chapter (OVC) which is also the chapter area for me personally, took time from his hectic schedule to talk with me about the functions of NMSS and how they support those of us living with MS. He gave me so much to share that I have split it into separate parts – how the Society operates at the national level and then a closer look at how his chapter office serves their clients and his personal connection with MS.

 

Take me away…..

By Laura Kolaczkowski—July 28, 2015

Those of us of a certain age will certainly remember the advertising campaign for a bubble bath product that would plead ‘Calgon, take me away’. The obviously distressed woman stands in front of a spinning background reminiscent of a scene from Vertigo and laments about the traffic, her boss, the baby and the dog. A soothing male voice from off screens says ‘lose your cares in the luxury of a Calgon bath,’ as we see her soaking in a bubble bath, calmly saying ‘I love it.’

If only it were that simple.

 

M.A.D. about MS – Stuart Schlossman

By Laura Kolaczkowski—July 21, 2015

Stuart Schlossman is the founder and President of MS Views and News, a clearinghouse for multiple sclerosis information and programs. His website is jammed full of links and videos, including many of the blogs you have seen here on MultipleSclerosis.net. Anyone who has been in Stuart’s presence knows it’s hard to get him to stop and do just one thing, so it was my good fortune he took a lengthy pause in his day to talk with me about his advocacy work for the MS community. I wanted to know more on why he is M.A.D. about MS. [Image: Stuart Schlossman, MS Views and News]

 

Planes, trains and automobiles

By Laura Kolaczkowski—July 16, 2015

No matter what mode of transportation you might use, when traveling with a chronic disease like Multiple Sclerosis, it pays to plan ahead. Stress and fatigue can make us miserable and ruin a long-anticipatedvacation. I’ve assembled a few tips that help make my vacation times smoother and I hope they will be of use to you, too.

First and foremost, get in your mindset that no matter how well you plan there will almost always be changes and you will need to make adjustments. So flexibility goes a long way in having a good trip.

 

Describing MS and its Symptoms

By Laura Kolaczkowski—July 15, 2015

If we stumble, fall and snap a bone, we are obviously ‘broken’ and need to be fixed by our doctors and often require assistance from our family and friends. No one questions if we need help and medical care.

When we get sick and have an elevated temperature, it’s easy for others to see the proof that we are ill, and we might need help from our doctors and an extra dose of compassion and help from our family and friends. It’s obvious because not only do we  say “I’m not well,” there is physical evidence such as x-rays  or a thermometer reading.  In these circumstances, everyone believes us when we say we are sick – they don’t even have to see us in person to get their proof.  They will take our word for it via a phone call or someone else sharing the news.

 

Equal Access to DMTs for Everyone

By Laura Kolaczkowski—July 9, 2015

The MS Coalition*, a group made up of the leading MS Organizations in the United States, released a new position paper in March, regarding the treatment of MS with Disease Modifying Therapies. This review takes a look at the use of DMTs in a variety of scenarios, such as age of onset, or when to change or discontinue a DMT.

You can access The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidencein its entirety online, and it makes for some interesting reading.

 

Out of Control: MS Drug Costs

By Laura Kolaczkowski—July 6, 2015

People using any of the Multiple Sclerosis Disease Modifying Treatments (DMTs) have been talking about this for some time. I wrote about it in my article At What Cost Can We Continue to Treat MS in September 2014.

This should come as no surprise, but in case you don’t already know, the costs of MS Drugs are escalating out of control and show no signs of slowing, let alone stopping or dropping. This is currently a big headline getting a lot of attention thanks to a study that was presented at the 2015 American Academy of Neurology  convention.

 

Late-stage Multiple Sclerosis

By Laura Kolaczkowski—July 2, 2015

You may find this conversation unsettling, so please decide for yourself if you want to read on. I am discussing the worst case scenarios for people with aggressive, progressive MS, and what may be referred to as late-stage MS. This is in response to the recent MultipleSclerosis.net MS in America survey and what the respondents asked for in additional information.

When I began writing about multiple sclerosis, a common question from the newly diagnosed had the theme of ‘am I going to die from my MS?” I would answer quite earnestly – MS won’t kills us. The life expectancy for someone with multiple sclerosis is very similar to the general population and the leading cause of death for people with MS is heart disease, cancer and stroke, according to the MS Foundation.  They point out that MS affects the quality of life but not the quantity.1

 

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?

 

ICMS 1

 

 

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.

iCMS 2

 

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.

iCMS 3

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.

On Being Normal

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There’s a lot to be said about the value of people with multiple sclerosis being in the company of others who also have MS; there is a special comradery when we get together.  It used to surprise me when I met up with others with MS that we talk very little about our personal health situations.  Beyond the perfunctory chat of how are you doing or answering brief questions about therapy choices, we talk very little about our own relationship with this MonSter; perhaps it’s because we already know all too well the ups and downs of living with a chronic disease.

 

Discussions among people with MS are usually unlike how we interact with non-MSers – who want details about our life but mainly about our health and our MS. Those conversations which focus on our MS, while often necessary, are tiring.

 

When we are engaged with other people who have MS, we are among our peers – in other words, we are normal. Gathering with other people who have MS may be one of the healthiest mental activities for me to do.  We compare notes about life in general, and hold the same conversations others might have with their friends.  We share family news, we talk about future plans, we relax and just enjoy the company without having to explain our MS.

 

From left: Nicole Lemelle, Laura Kolaczkowski, Lisa Dasis, Dave Bexfield, Yvonne DeSousa, Matt Cavallo, Jodi Dwyer, Lisa Emrich, Jon Chandonnet, Joan Wheeler

From left: Nicole Lemelle, Laura Kolaczkowski, Lisa Dasis, Dave Bexfield, Yvonne DeSousa, Matt Cavallo, Jodi, Lisa Emrich, Jon Chandonnet, Joan Wheeler

I recently had the opportunity to rendezvous in Chicago with a number of other people who blog about multiple sclerosis – these are the trusted voices of our MS community.  We were at a Blogger Summit hosted by Novartis, and they provided transportation, lodging and food for the weekend.

 

The company refrained from discussing their particular MS drugs and instead wanted to know more about the needs of the greater community.  We were given unrestricted access to three experts in the MS field – a neurologist, urologist and MS nurse- for a panel discussion and Q&A on recent changes in the treatment of MS.  The majority of our meeting was focused on the Quality of Life (QOL) items that can make a huge difference.

 

My own QOL numbers spike each time I get to meet up with these bloggers and others who understand the 24/7 life of someone with MS. That evening after the meetings, a number of us were still in Chicago until our morning flights home. We ate deep dish pizza we had delivered to a sitting area in the hotel lobby, spread out and as comfortable as if we were in someone’s living room.  We strategized a bit about next steps in advocacy for the MS community but that’s a discussion removed from our personal daily lives. We talked about travel and our families and life in general and much more.  But we mainly laughed and relaxed, and in the moment we were normal.

be well,

Laura

 

 

 

 

Shhhhh! Don’t Tell the Neighbors

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We have wonderful neighbors – they’re not so much like the old-fashioned ‘can I borrow a cup of sugar’ type that were around for decades.  Now that the women have gone to work, including me, there isn’t time for much homemade baking or knocking on each other’s door just for a visit.

 

Instead, the new ideal neighbor we have are the men.  They are the ones who  don’t bring baked goods, but instead show up with their power tools.  They’ve fixed our deck.  They’ve repaired leaking plumbing.  We even had new electrical upgrades done by a neighbor (he’s a licensed electrician, fortunately).   They do these gratis – I wouldn’t think of offering them money at this point and instead find things to give in gratitude for their help.  It might be an ice cream cake from a local creamery or some strip steaks from the butcher shop. If I’ve had the luxury of time and able to crank up the BBQ smoker, I might gift them with racks of ribs or dishes of pulled pork.  You get the idea – I try to show our appreciation for their neighborliness.

 

So what is it I don’t want the neighbors to know?  I cut the lawn today.  Seriously, I cut the grass and it felt good.  You see, these helpful guys also own the ultimate power tool –  zero turn riding mowers, and it is fairly common for us to come home from work and find our lawn cut if it has grown a bit long and shaggy..  I hear you thinking now – what’s wrong with that?  Honestly, nothing EXCEPT I need the exercise.  It’s a great, and easy workout for me to mow our lawn with the self-propelled mower we bought two years ago specifically because it is easy to use.   Our daughter also helps when she is available..     I just start it, and hang on to the handle and it makes me walk.  I can adjust the speed from crawling to sprinting, and tend to do it on the low and slow side.

 

We have a half-acre lot with significant inclines and it is also a good upper body work out to keep the mower moving in a straight path, up and down those hills. It takes one us with our mower about 90 minutes to complete the job.  The guys can get this done in about 15 minutes.  But not only when they cut our lawn, am I cheated out of the opportunity to exercise they aren’t getting any workout either.

 

Two weeks ago I attempted to cut the lawn and  I stopped after about 20 minutes to take a break.  That’s a reasonable length of time in the heat and I know not to push and try to do it all at once.  I came inside and was sitting, chugging ice water when I hear a familiar sound ….  my husband went out to check and sure enough, one of the helpful neighbors was zooming around our yard on his rider.  Hubby signaled him to stop and we would do it, but this nice neighbor would have nothing to do with that, he wouldn’t even slow down, and in 10 minutes he finished the task I had begun.

 

Later, talking with his wife, I told her they are cheating me out of my exercise and she said he was  watching me  mowing, and was worried about me doing it myself. Never mind that he stopped a task he was doing for her to hop on the mower and help me.

 

At this point, I must tell you I have my own man and he’s great for minor car work and gas fill-ups, grocery shopping, and taking me out to eat,  but he has his own  physical and skill limitations. We have it worked out pretty well between his problems and my multiple sclerosis, we get along by doing tasks our way, in our own time.

 

So this morning, while it was still cool(er), and my neighbors were gone, I put my cell phone in my pocket in case I ran into problems and needed to call 911 for help, slipped on my nasty mowing shoes, and started the task.  It felt good to get out there but after 20 minutes or so, my body temperature rose, I was no longing pushing the mower but being dragged, even though I had it at the slowest speed,  and I knew I was at my limit.  I  put the mower aside and came into the house to cool off.  As I sit here with an ice pack on my neck, stripped half-naked,  and trying to cool down, I can’t help but think for at least a fleeting moment …..wouldn’t it  be nice if someone else finishes the job? Shhhhh!!  Don’t tell the neighbors.

You May Want to Read these posts on MS.net

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May was a busy month – between wrapping up the MS news from AAN in April to covering the annual Consortium for MS Centers meeting in the end of May, my typing fingers have worked overtime to keep up.  I’ve been busy writing for multipleslcerosis.net  and here are the links and a bit of a tease for each of my  articles published on their site in May.  I hope you find something worth your time to read ….


How to Find a Good Neurologist

By Laura Kolaczkowski—May 31, 2015

 

Some of us have been fortunate to connect with doctors and other medical care providers who we are pleased with, and we often feel like  winners in some big lottery; but then there are those people who are still seeking the right team members. People will often ask how to find a good doctor and I’ve accumulated some tips that might be useful if you are in the still searching group.

http://multiplesclerosis.net/living-with-ms/how-to-find-neurologist/

 

When Can We Stop Taking Our MS Drugs?

By Laura Kolaczkowski—May 27, 2015

It’s easy to be lulled into thinking we are better in our health and stop taking our medications. That is why there is that warning notice on the bottles of antibiotics you might be prescribed for infections – the one that says ‘important! Take this medicine until gone.’ The medical experts know we need to take all of these drugs to really eradicate the cooties they are prescribed to cure. If we stop them too soon, it is always possible the infection is still there and will come back and create more problems.

http://multiplesclerosis.net/living-with-ms/when-can-we-stop-taking-our-drugs/

 

For Frequent & Not-so-Frequent Flyers

By Laura Kolaczkowski—May 19, 2015

 

Through the advocacy work I am doing with the Accelerated Cure Project and the iConquerMS™ patient registry (have you joined yet?) for PCORnet, I have been making frequent trips by commercial airline to attend meetings.  Until this began I would make maybe one flight per year for a leisure trip.  Anyone who has flown in recent years knows the additional precautions that are taken when going through airport security.  If you travel by air, whether often or infrequently, I thought it might be useful to share this with you because you also know about these challenges to get to the other side of the checkpoints.

http://multiplesclerosis.net/living-with-ms/for-frequent-not-so-frequent-flyers/

 

Your MS Isn’t My MS

By Laura Kolaczkowski—May 13, 2015

 

It sounds like a variation of a school yard taunt or bragging – but my MS isn’t your MS.  So often when we are in conversation on line with others and talking about our particular course of multiple sclerosis, it is only natural to compare where we are with this disease to how others are doing with their own MS.

And that is where we have to put the brakes on and bring  the conversation train to a screeching halt. Your MS is never going to be like my MS, and that is part of what is so confounding and confusing about this disease for us, our family and friends, and even the doctors and researchers.

http://multiplesclerosis.net/living-with-ms/your-ms-isnt-my-ms/

 

Sticking with Tysabri, but Less Often May be Possible

By Laura Kolaczkowski—May 7, 2015

 

There has been quite a bit of exciting news from the American Academy of Neurology (AAN) conference this year; a lot of it has been about new ways of looking at existing drugs. A study that has my particular interest is a look at natalizumab dosing and if it can be given less frequently and still be an effective multiple sclerosis disease modifying therapy treatment.

http://multiplesclerosis.net/living-with-ms/sticking-with-tysabri-but-less-often-may-be-possible/

 

The Name Game

By Laura Kolaczkowski—May 4, 2015

 

Are you old enough to remember the song The Name Game, where letters in names were replaced with other letters and you came up with a nonsensical line such as this one for the name Shirley –

Shirley, Shirley bo Birley Bonana fanna fo Firley
Fee fy mo Mirley, Shirley!

Those names made out of Shirley are much like what I’ve been experiencing this week.  For some reason I lost the proper names of many long time friends and even family members, and have been creating nonsense names in their place to fill in the gaps.

http://multiplesclerosis.net/living-with-ms/the-name-game/

 

For a further look into the archives and my writing published through MultipleSclerosis.net, you can find my index of over 160 articles,  at http://multiplesclerosis.net/author/laura/

 

 

Considering A Break

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I’m contemplating taking a break from my DMT.  I’ve been on natalizumab (Tysabri) for over three years and this winter I have been plagued with recurring infections.  In particular I’ve had conjunctivitis on and off since the end of January.  It goes away with treatment and then comes back as soon as the drugs stop.  It’s been medically treated in a variety of ways and with assorted  meds and nothing seems to stick.  I’ve felt worn down and dragging , as this wicked little infection continues to have its way.  The only thing that makes sense to me is my immune system is tired, too.  Perhaps the Tysabri has my system so suppressed that it doesn’t have anything remaining to fight this one.

I sent a message to my neuro about taking a break – perhaps  just a short one of a few months to see if I might feel better or at least this pink eye will stop and I’ll at least look healthier.   My doctor’s  reply – ‘let’s talk. We need to have a plan.’ So we will talk – which means I will talk and he will listen.  And then he will talk and I will listen.  And then he will ask me what I want to do, because that is how he treats his patients .  And most probably I will doubt whatever choice I make because I also know about the rebound effect coming off Tysabri can be nasty, but somewhat controlled with steroids.

I’m not wanting to stop for forever because I’m not willing to bet against the house in this poker game and I believe the science that DMTs delay progression.  But if I had to decide on my own at this very moment I would be packing my bags for my first DMT  break since I was diagnosed in 2008. Fortumately I have an expert to confer with before making a final decision, but I can’t help but think everyone loves a holiday, right?

Patient Powered Research Networks (PPRN) & You

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Do you wonder how you might get involved with research in a simple way? You can always connect with one of the Patient Powered Research Networks (PPRN’s) that are actively looking for people to share their health data and research questions. PPRN’s are an offspring of the Patient Centered Outcome Research Institute (PCORI) and cover a wide range of chronic diseases and conditions.

 

I write often about the Multiple Sclerosis PPRN, iConquerMS™, and my role as the Lead Patient Representative and now also the Chair of the Governing Board.  I would love to have all of you join our PPRN and join the Big Data movement to find the answers about multiple slcerosis.

You can learn about PPRN’s, and PCORI through our portal at www.iconquerms.org.  But perhaps you have other conditions you live with and want to do more.

 

Following is the complete list of PPRNs and some of their identifying information.  I encourage you to read through the list, explore the associated links and see where you might help advance research.  At the very least, we all qualify for Health eHeart, an ambitious heart history registry that only takes a few minutes to complete and is for everyone, whether we  have heart disease or not.

 

We can only build this new way of doing research by getting the  help of many people,  and that includes you.

Be well,

Laura

 

PPRN’s of as May 1, 2015 and their information, from data I have compiled. Let me know if you spot omissions or errors so I can make the corrections.

 

ALD Connect

Network name:  ALD Connect

Website: http://www.aldconnect.org/

Project summary available at:  http://www.pcori.org/research-results/2013/ald-connect

Organization: ALD Connect, Inc.

Condition: Adrenoleukodystrophy

Population Characteristics: Pediatric and Middle Aged

 

ABOUT – American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network)

Network Name:   ABOUT  Network

Website: https:aboutnetwork.org

 

Project summary available at http://www.pcori.org/node/4408

Organization: University of South Florida

 

Condition: Hereditary Breast and Ovarian Cancer

Population Characteristics: Female

 

AR-PoWER

Arthritis Patient Partnership with Comparative Effectiveness Researchers (AR-PoWER)

Network name: AR-PoWER

 

Website:  in progress

Project summary at http://www.pcori.org/node/4401

 

Organization: Global Healthy Living Foundation

Project summary available at http://www.pcori.org/node/4401

 

Condition: Arthritis (rheumatoid arthritis, spondyloarthritis), musculoskeletal disorders (osteoporosis), and inflammatory conditions (psoriasis)

Population Characteristics: All

 

The CCFA Partners Patient-Powered Research Network

Network name:  CCFA PPRN

 

Project summary available at http://www.pcori.org/node/4397

Website:  https://ccfa.med.unc.edu/user/sign_up

Organization: Crohn’s and Colitis Foundation of America, Inc.

Condition: Inflammatory bowel disease (Crohn’s disease and ulcerative colitis)

Population Characteristics: All

 

CENA – Community Engaged Network for All

Network name: CENA

Website: http://www.jsrdf.org/JSLIFE

 

Project summary available at http://www.pcori.org/node/4400

Organization: Genetic Alliance, Inc.

Condition: Alström syndrome, Dyskeratosis congenital, Gaucher disease, Hepatitis, Inflammatory breast cancer, Joubert syndrome, Klinefelter syndrome and associated conditions, Metachromatic leukodystrophy, Pseudoxanthoma elasticum (PXE), Psoriasis

 

Population Characteristics: All

 

The COPD Patient-Powered Research Network

Network name: COPD PPRN

 

Project summary available at http://www.pcori.org/node/4396

Website: www.COPDPPRN.org

 

Organization: COPD Foundation, Inc.

Condition: Chronic Obstructive Pulmonary Disorder

Population Characteristics: Multiple co-morbidities

 

 

Duchenne Connect Patient-Report Registry Infrastructure Project

Network name: DuchenneConnect Patient Registry

Project summary available at http://www.pcori.org/node/4404

 

Organization: Parent Project Muscular Dystrophy

Condition: Duchenne and Becker muscular dystrophy

Population Characteristics: Pediatric

 

Health eHeart Alliance

Network name:  Health eHeart Registry

Organization: University of California San Francisco

Website: https://www.health-eheartstudy.org/

Project summary available at http://www.pcori.org/node/4407

Condition: Cardiovascular health

Population Characteristics: Multiple co-morbidities

 

ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and Ulcerative Colitis

Network name: ImproveCareNow Registry

Website: https://improvecarenow.org/

Project summary available at

Organization: Cincinnati Children’s Hospital Medical Center

 

Mood Patient-Powered Research Network

Network name: MoodNetwork

Website: www.moodnetwork.org

 

Project summary available at http://www.pcori.org/node/4403

Organization: Massachusetts General Hospital (The General Hospital Corp.)

Condition: Major Depressive Disorder (MDD) and Bipolar Disorder (BP)

Population Characteristics: Multiple co-morbidities.

Seeking to enroll : individuals with mood disorders (unipolar depression and bipolar disorder)

 

Why should someone join this PPRN: To help prioritize the research questions for mood disorders, to share data to better understand mood disorders and create better interventions, and to join a community of people actively seeking answers to the diagnosis and treatment of mood disorders.

(thanks to Dan Goodman, Mood PPRN Patient Rep, for the additional information)

A Multiple Sclerosis Patient-Powered Research Network

Network name: iConquerMS™

Organization: Accelerated Cure Project for Multiple Sclerosis

Website: www.iConquerMS.org

Project summary available at  http://www.pcori.org/node/4391

 

Condition: Multiple Sclerosis, including RRMS, SPMS and  PPMS,  as well as CIS and RIS

Population Characteristics: 70% Female

Enrolling controls: Yes

Why should someone join this PPRN?  iConquerMS is a unique opportunity to  share data and research questions from  a patient centered approach to find the cause of multiple sclerosis, and identify ways to improve the quality of life of people living with MS.

 

NephCure Kidney Network for Patients with Nephrotic Syndrome

Network name: NephCure Patient Registry

Organization: Arbor Research Collaborative for Health

Website:  https://www.nephcurekidneynetwork.org/

 

Project summary available at http://www.pcori.org/node/4394

Condition: Primary Nephrotic Syndrome (Focal Segmental Glomerulosclerosis [FSGS], Minimal Change Disease [MCD], and Membranous Nephropathy [MN])

Population Characteristics: All

 

The Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium

Network name: PARTNERS

 

Project summary available at http://www.pcori.org/node/4398

Organization: Duke University

Condition: Juvenile Rheumatic Disease

Population Characteristics: Pediatric

Enrolling controls:

 

 

Phelan-McDermid Syndrome Data Network

 

Organization: Phelan-McDermid Syndrome Foundation       Phelan McDermid Syndrome Foundation

Website:  https://pmsiregistry.patientcrossroads.org/

 

Project summary available at http://www.pcori.org/node/4405

Condition: Phelan-McDermid Syndrome

Population Characteristics: Pediatric

 

PI Patient Research Connection: PI-CONNECT

Network name: Pi-Connect

Organization: Immune Deficiency Foundation

http://primaryimmune.org/about-primary-immunodeficiencies/

 

Project summary available at http://www.pcori.org/node/4402

Condition: Primary Immunodeficiency Diseases

Population Characteristics: All

 

Rare Epilepsy Network (REN)

Network name: Rare Epilepsy Network Registry

Organization: Epilepsy Foundation

Website: https://ren.rti.org/

 

Project summary available at http://www.pcori.org/node/4399

Condition: Aicardi Syndrome, Lennox-Gastaut Syndrome, Phelan-McDermid Syndrome, Hypothalamic Hamartoma, Dravet Syndrome, and Tuberous Sclerosis

Population Characteristics: Pediatric

 

Sleep Apnea Patient Centered Outcomes Network (SAPCON)

Network name: MyApnea

Organization:American Sleep Apnea Association

Website: https://myapnea.org/

Project summary available at http://www.pcori.org/node/4393

Condition: Sleep Apnea

Population Characteristics: Multiple co-morbidities

 

 

The Vasculitis Patient-Powered Research Network

Network name: Vasculitis Patient-Powered Research Network

The Trustees of the University of Pennsylvania

Website: http://www.vpprn.org/

 

Project summary available at http://www.pcori.org/node/4406

Condition: Vasculitis

Population Characteristics: Adults