Smart Patients & iConquerMS™ Collaboration

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The people in the MS community are some of the smartest patients around – we read, we research, and we study multiple sclerosis.  And quite often we do something even more special – we share what we know and how our lives with MS are going to help others.

Finding a secure and safe place for sharing about our healthcare experiences and questions isn’t always easy or simple. For some of us, it might be in a local support group, or one-on-one conversations by phone or email.  But many of us want to connect with more people and that is why I am so excited to share
our new partnership
between Smart Patients and iConquerMS™.

Unlike so many other online forums, the Smart Patients Multiple Sclerosis Community is protected from the internet trolls who create chaos, and data mining is blocked with the most stringent methods. This means companies who are constantly researching MS in the background by gathering analytics in patient discussion groups cannot access our conversations. I love the Smart Patients model that ensures
the site is for patients and our loved ones. Period.  Researchers, clinicians and others won’t be members of our community and we can feel free to share what we want.  It is not possible for outsiders to come into the community and read our posts – you have to be a member to view the conversation and that function is closely controlled by our partners at SmartPatients.


Some of our best ideas come when we work through situations and problems with input from others.

 

Smart Patients is a secure, safe online community where people with common interests in multiple sclerosis are meeting up, having conversations, sharing ideas.  Peer support is powerful, and can give us the emotional strength to face the challenges of MS.

Aside from providing peer support, the online MS patient community can also discuss topics, trends and ideas for iConquerMS research. The patient journey is an important step in identifying ideas that improve care and quality of life for MS patients and their families. Roni Zeiger, Smart Patients founder and CEO says, “The magic happens when we put data in the context of conversations. This helps patients learn from each other and can help all of us learn what research questions matter the most.”

Smart Patients is an exclusive closed group, and you must either have MS, or be a family member or loved one affected by MS personally to join Smart Patients

You don’t have to be a member of iConquerMS to be part of the Smart Patients MS Community, but I hope you will want to be a part of both.

 

There are two ways to get to the Smart Patients MS community –

  1. Sign-up for Smart Patients MS community through iConquerMS .
  2. You can also get to this exciting new forum directly from the web via https://www.smartpatients.com/iconquerms

No matter how you get to the Smart Patients Multiple Sclerosis Community, you will find a vital  and growing community discussing  life with MS and ways we can make our lives better. I hope you’ll join me in deeper and richer conversation about life with MS at Smart Patients.

be well,

Laura

 

Your input needed for talk!

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Want to help envision the perfect world of MS Comprehensive Care and share that message with the largest gathering of MS clinicians in the US? The Consortium for MS Centers Annual meeting is coming in May and we have a unique opportunity to share our ideas about MS Care via one of the presenters.

Copy these questions, and send them with your reply to MSCenterCare@gmail.com.  That is an email address I set up to receive responses. I will not be sharing your personal information with the person giving the talk.

 

Your name (only first name will be use!)

Your state (or country)

Photo (if you are willing) – make sure it is a high quality resolution pic because when I say big screen, I mean BIG screen

Is your  MS doctor in a comprehensive clinic setting?

Doctor’s name if you are willing to share – this will NOT Be a part of the presentation

What would your ideal MS Comprehensive Center offer/In a perfect world, what would your MS clinic look like?

Are the services  you need available to you in your MS clinic  or do you have to travel to other places?

If parent of small children, how difficult is it to arrange childcare for your medical visits ?

Are support groups or other meetings held at your clinic?

Does your clinic have a way to find out what patients think, such as an advisory board? Would that be useful to your clinic?

Any other ideas you want to share….. bring it on!

 

This is our chance to be heard!!

be well,

Laura

 

Free iConquerMS™ T-Shirts!

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Want a free iConquerMS T-shirt?

It’s simple and easy….

If you join iConquerMS before Friday, April 14, we will send you an iConquerMS  t-shirt for free. We will even pay the postage to anywhere in the US.

iConquerMS™ is facing a deadline for enrolling people in our online registry of people affected by MS, (and their friends and family as controls)  and we need you to join us today.

You’ve already joined iConquerMS but still want a shirt? 

Recruit one other person to join iConquerMS and when they join….

We will send you and them an iConquerMS t-shirt! There is a spot in the registration where people can tell us how they heard about iConquerMS and they can put your name in that space to make sure you get your free t-shirt. This means we will pay the postage twice!

 

How can you get your own free iConquerMS t-shirt?

Go to  www.iconquerms.org and click on the button that says JOIN NOW and follow the prompts. 

You can learn more while there about who we are and how your health information will help advance MS research for the people who matter most – you and me!!

Claim your free iConquerMS t-shirt today and help us conquer MS!

Thanks,

Laura

PS – Be sure to share this link with others!

Karma and so much more

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It has been such a rough year and there have been way too few occasions to celebrate in 2016. We were quietly observing our wedding anniversary tonight and in the almost deserted mom and pop Italian restaurant there was eventually only two other diners, a young couple who were obviously beginning their own slow waltz. He had the look of a hard life already worn into him and it was hard to tell about her because she had her slouch hat pulled far down on her head and was seated with her back to us. We exchanged words and as the conversation unfolded he expectantly told us they were heading to NYC for the ball drop at New Year’s in Times Square and peppered my husband with questions about the drive to New York.  We eventually shared that we were celebrating our own anniversary of 43 years, compared to their one month celebration.

We also heard more about other details in his obviously hard life, most made by himself but others by the misfortune of poor luck and genetics. In the midst of his story was the revelation he had cared for both his mother and his sister who were in wheelchairs for years due to a degenerative genetic muscle wasting disease but were now deceased. There was no mention of our own questionable health in the conversation and our canes were well hidden under the table.

It was clear from his words that he was doing his best to turn the corner and his life around. A short while later as we were finishing our meal and the server had dropped our bill on our table, he got up and approached our table and put down two crumpled twenty dollar bills and stated they wanted to treat us to our anniversary dinner. We protested, but he said he wanted to make it a deposit on good karma for their own future. I had to tell him sorry, but he would need to take back his money and use it in Times Square to buy chestnuts, pretzels and a deli corned beef sandwich, and then made them promise to give each other a kiss at the stroke of midnight in our honor. Reluctantly he agreed to the money return, and we left wishing each other a happy new year.

As we paid our bill at the register, a quaint checkout custom of this particular spot, my husband and I looked at each other and immediately knew what to do – we put down a deposit on our own good karma and paid their bill in addition to our own, and then we walked out the door with a smile on our faces. May you all find someone to celebrate with as we move into this next year, and find ways to bring good karma to us all.

Life and MS- A Worthy Website

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Upfront I want to confess the internet can consume so much of my time when I start looking for ‘something’ and find lots of ‘somethings’ to view.  Often that time is just wasted but sometimes I come across a gem.  Today I found such a site that I’m excited to share because it has some content I have not found elsewhere.  I came across this site because I was looking for stretching exercises for my hip abductor muscles and they have a large number of exercises posted, all of which are much like what I have done in physical therapy. They have short videos and also photo illustrated exercises that are appropriate for those of us with MS.

It is not often that I find a website produced by a pharmaceutical company that makes me excited enough to share it with my readers, but http://www.lifeandms.com is different. It took me only a few moments to find and research the company behind this site – it is Almirall, the pharmaceutical company that markets Sativex, a compound made from cannabinoids, that is used to treat spasticity.  Sativex is widely available in Europe, Asia and elsewhere in the world, but is not licensed by the FDA for sale in the US.  As best as I can tell they are situated in Spain, but the website is in easy to understand English.

Sativex is found to be effective in relieving the symptoms of spasticity, and Almirall has dedicated much of their MS information on the website to this common symptom, which they say affects 82% of us but they add that in 50% of the people it is a mild symptom. Their site has a simulator to allow people to better understand what spasticity is and how it affects so many of us with multiple sclerosis, through the use of a simple drawing challenge where you can select the level of spasticity to affect your ability to complete the task.

Interestingly, there is no mention about their product Sativex, cannabinoids or medical marijuana anywhere on the website.  I don’t know if that is because advertising by pharma laws are different in  Europe, or if they just chose to be commercial free. Either way, there is just lots of very good, useful information about living with MS and simple exercises that most everyone could do even if you don’t have this disease.  I hope you will take some time to browse their pages and let me know if you find it useful

 

 

 

 

 

Post-Election Reflection

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Note – this is not my usual multiple sclerosis commentary blog but something even more important for me to weigh in on. Also, I have disabled comments on this page because I just need to get this out of my head and not turn it into a debate.

 

Leading up to election day I had a feeling this was going to turn out differently than I and so many others had hoped for.  Don’t paint me as just a bad loser. I have backed presidential losers before, starting with the first campaign I worked for before I was even old enough to cast my own vote.  I learned that standing in front of a polling place campaigning for George McGovern was a cold, lonely spot, but I never felt afraid or even hesitant to voice my support.  My yard sign for Kerry/Edwards still hangs in my garage and at least half of that duo would have been great in office.  I’ve always tried to listen to the views of others and have hoped the same would be offered to me.

Fast forward to now and I’m still processing – so much has happened this year, and all of it resonates as deeply personal. I’ve refrained from talking or writing much about our presidential election results.  Instead, I have been reading both the positive and negative reactions of others, some who are strangers and others are people I know well.  I’ve given the occasional thumbs up on Facebook or skipped commenting at all when I disagreed.  I have not ‘unfriended’ a singled person because I’m trying to make sense of it all, as I’m sure so many others are.  What I know that I already “don’t get’ is when it became acceptable to toss out civility and speak our minds in the most hatred and ugly ways, proclaiming it is a right under our constitution without understanding that this right also comes with the responsibility and accountability to the laws of a free nation.  When did we stop listening to others?

I’ll make no apologies that I did not and would not vote for the man who has now been named our next president.  His and his representatives’ words of hate fired toward minorities, women, non-Christians, LGTBQ community members and so many more,  turned me off from whatever message he might have had about being different and draining the swamp. The fact that these were not occasional missiles fired to provoke his followers into action but a constant barrage that began much earlier this year, should not and cannot be glossed over by his promise of reconciliation.

I don’t understand the people who voted for him when they know that I and so many others  including their own family are members of the disability community he felt necessary to mock, they have family members  who are bi-racial, or those with grandchildren who have a parent from those other countries which we will now build a wall to protect ourselves from.  Nor do I get it when I look at the fathers and mothers of adolescent girls and think it is ok to make a man who claims the privilege of being able to grope and belittle women, their president. I don’t understand how a candidate can select a running mate who not only wants to live out his own extreme evangelical religious beliefs, but has proclaimed that his religion is the one that must be the rule of our land.  When we vote, not only is it our vote we cast for the present,  but we are also doing it for the future of this country, and to have overlooked these flaws is a serious shortsightedness that cannot be corrected regardless of what lenses we might view this through.

I understand this country is hurting and struggling – we have trillions of debt to figure out mainly thanks to waging wars started over a decade ago that seem improbable to win against enemies that are constantly shifting their shape.  We have a crisis at home with the people who have fled here from other countries, escaping conditions that few of us can imagine whether they come from war torn countries across the ocean or the poverty just south of us in Central and South America. Perhaps I don’t get angry when I think about these people wanting to be here because I deeply appreciate the good fortune and luck of having been born an American. Who can blame them for wanting to be a part of this country which proudly proclaims to the world our unique concept of liberty and has always welcomed the huddled masses.

I also recognize the genetic pool that had me come from my mother’s womb as a white person determines my life opportunities much differently than had one or both of my parents been a person of color. The argument that we all have the same opportunities is blatantly false, and is quickly proven with a few moments of research if you genuinely wish to know more and understand the inherent racism we live with.  I was hoping we were making progress toward equality, but too many events over this past year or so show we are still so far from that goal we might not even be able to view the end zone.

Just because I am white does not mean that my way is the best way or the only way, but it appears the person who will have the most influence on our next president does believe that, as evidenced by his publications which support and allows white supremacist views to go unchallenged.  I am sickened by the thought that the head of the KKK is applauding this appointment, but even more horrified that this is acceptable to the people who voted for this next president.  If you exercised your vote to elect this man, you can also exercise your voice to say this is not what you thought you voted for and speak up now.  Hold our next president accountable to a higher standard.

The White House on Pennsylvania Avenue has been good enough for everyone since president #2 and is equipped to handle all contingencies and is conveniently located to meet with members of the legislative bodies.  Personally I would be delighted to live in the White House year round and I hope the next president chooses that as well because if he sticks with his idea to jet back and forth to his NYC penthouse, the gridlock on the streets and in the air in both cities will become unbearable and costly. All joking aside, it would probably be cheaper to remodel the White House and gild every throne in gold than have a president who has just a part-time residence in Washington DC. The tab for providing staff and security appropriate for the leader of the free world will rise each time he transfers locations and his campaign promise to reduce tax spending should start with his own living choices.

An acquaintance in the MS community is an award winning photographer of wildlife and spends hours in the bushes waiting for just the right shot of her beloved shore birds.  Her work is stunning and beautiful, and requires inordinate amounts of patience, but the hatred toward the losing candidate that she continues to spew through her FB posts tarnishes all that she does and is what finally moved me to write this today, one week post-election. For whatever reason, she can’t turn off the public display and hasn’t even tried to tone down her words.  Moving forward is impossible it we continue to hold onto the past as she continues to do.  I’m hoping that whatever candidate you voted for, you will find a way to move forward to improve the snapshot of today and not indulge in hate.   Our country deserves better.  We deserve better for each other and especially for our children and our grandchildren.

Yes, I know this is a simplistic view but it is at least a start for me to try to wrap my head around all the contradictions of this election where people who I know are good people made a choice I strongly disagree with.  I wish I could turn back the clock to a more innocent time of standing on the corner inviting people to vote for McGovern – maybe we could get it right if we had a second go at it.

Peace,

Laura

 

 

 

 

My Updates

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Time sure has a way of getting away from us and I feel that a lot as I notice my personal blog has sat here neglected.  It’s not that I don’t have things to say and write about, as I have been busy with other outlets. To give a quick update-

I am still writing for MultipleSclerosis.net –  the great group of people at Health Union would have a hard time getting rid of me because I love their approach to consumer medical care and empowerment.  They are an amazing group of people to work with, and I particularly like that they will print whatever I submit, with no editorial control.  You can catch all of my writings there via this index link- https://multiplesclerosis.net/author/laura/

 

In June at the Consortium for MS Centers Annual Meeting, I met the owner of Multiple Sclerosis News Today, an online reporting source of medical news and I began a weekly column on patient engagement for their publication. My column, Engaging Thoughts, is a look at some of the tough areas needed to move  research forward. I’ve slowly gathered regular readers but it appears the hot topics the people with MS there want to read are about ‘cures,’ whether they are proven or not.  How we engage as patients is an important topic and I’m thankful the MS News Today owner is sticking with this idea and allowing me the opportunity have this conversation.

Additionally, I have written for Mango Health, a health app that has some interesting side uses.  I have a series of articles on various topics coming out, including one on Strength Training. If you don’t know Mango Health, you might want to check them out and give their app a try to tracking your health needs and other activities of daily living.

REAL MS™ is a longitudinal study for people affected by MS, and it officially launched this month.  we also have a long-awaited new look to the iConquerMS™ website and portal. I’m excited about both of these and happy to share we have over 3,100 people now enrolled with our PPRN.

It has been a long summer for me filled with conferences, writing, research, health challenges and much more.  The majority of things though have been great and I hope to be sharing more good news in the near future.  Until then, I hope you will follow the above links and catch up on any of my articles you may have missed reading, leave your feedback, and learn a bit more about my life with MS.

be well,

Laura

 

 

 

Official Channels & Protocol

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Back in March I had someone online comment about how one of the world’s largest financial rating organization was now offering a service to assist medical providers rate the adherence of their patient population to their medications. The concept was intriguing and alarming and I used the ‘contact us for more information’ portion of their website, requesting information.  Straight up I said I was looking for information to write a blog on the topic.

The contact person and I played phone tag and email tag back and forth from March until July for a variety of legit reasons on my part.  When we finally spoke by phone in July he was great, informative, and helped to answer my questions as to how this very large company, which normally rates financial risk could be in the medical risk market.  It was explained to me that this was more a service of providing the analytics for a provider, such as Medicare, to use to assess risk and they do not maintain medical databases.  What was done with that information was unclear to him after the programs are delivered to their client.

I wrote the blog, allowed this nice person to read it and he requested his name be removed because it wasn’t his official position to comment.  I complied with his wishes, the article posted with just a few of his quotes attributed to ‘a person at’ and then the next day I received a not so kindly worded email from the PR firm for the financial giant, demanding to know the name of the person I spoke with.  I offered them that information after first offering to allow my contact to do it for himself.  The PR person curtly pointed out I had not followed official procedures and had somehow violated something with their protocols.  Huh?

Then today, in another email follow-up from a different suit at the parent company, I was told I need to edit the blog, take all of the quotes out since this person was not authorized to speak for their company, there are strict rules and protocol to follow, and that I was to send them a copy of the revised article before it was published.   Again, huh?  Is that really how this works? And BTW, it was already published and you know what they say about the internet – once it is out there, it never can really go away.

If you read my blog (as of now it is still posted)  you will find that there is actually little focus on this leader in the financial rating industry  except using a simplified explanation of their medical adherence analytics system as the springboard for the rest of my article, focusing on the larger problem of adherence and its cost to our medical system in the US. If I were them I would have said no harm, no foul and let it be, but of course I am not this behemoth corporation.

At this point I am even more curious as to what medical adherence scoring service really offers if it has raised such interest in a simple MS patient blog.  If anyone can offer insight, I would love to hear it.  That is unless you happen to work for FICO,  because I wouldn’t want to violate any more protocols.

 

As always,

Laura

 

 

 

 

 

 

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.

 

 

 

Night and Day

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No, I’m not talking about the phases of the sun and moon, but the differences between the two major conferences I attended in June.  First up was the Consortium for MS Centers (CMSC) and my month ended with DIA 2016, the annual conference for the Drug Industry Association.

#DIA2016 was infused everywhere with the words ‘patient engagement’ while I saw very little of this labeling at #CMSC16.  What I saw and heard was just the opposite – almost every piece of #CMSC16 was about patients and there was no need to proclaim anything about patient engagement in the process.  I would have liked to see more people affected by MS as part of their formal program, but there was no doubt to me the entire meeting of #CMSC16 was about the patient and their caregivers.

#DIA2016 was the opposite – I found little evidence of the patient voice in the presentations or elsewhere.  The purpose of this major meeting of the drug industry was clearly about all phases of the development of drugs, but how patients were engaged in any of this remained a fairly vague concept. Do you know the phrase lip service? – this is exactly how the #DIA2016 experience felt to me in the large picture.

On a  brighter note, but also  on a  much smaller scale at DIA, their leadership does seem to honestly have the desire to be true to this concept of patient engagement and as such, they have a wonderful asset in Elizabeth Lincoln, as the Director of Global Engagement.  Elizabeth was in charge of preparing our class of DIA Patient Fellows for this event, and she has been a constant voice about patient engagement being central to their processes.   The leadership of DIA has encouraged the patient fellows to remain involved after the convention, and to submit ideas for presentations in 2017.  The challenge for DIA is to insist that all of their presentations include patients on the panels of experts and not just the ones constructed by patient advocates.

There are lessons for DIA to learn from attending conferences such as CMSC, where the patient is at the center of every piece of conversation. I recognize this is a major shift in thinking for the drug industry to undertake, but if they want to offer more than lip service to the idea of patient engagement, it would be a useful first step.  The flip side of this is the patient advocacy organizations and those of us who have attended DIA or anyone else who is interested can help this process by joining DIA and contribute to their patient engagement discussions. I’m in …. How about you?