A look back at 2017 before jumping into 2018

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Hello 2018!

So much multiple sclerosis research, learning and advocacy took place for me in 2017 and very little of it was captured here in my personal blog, so I thought it would be a good time to do a brief recap.  Not much changed in our personal lives- my husband is still working; our children are still productive adults; the grandchildren continue to grow into amazing and compassionate people; a new grand-dog was added to the pack; and I still have MS.

Family Christmas 2017

My MS Care & Treatment

On the MS front, I changed therapies and jumped from the monthly infusions of natalizumab (Tysabri)  to the every six months regimen of ocrelizumab (Ocrevus).  Do I notice a difference?  Other than not spending as much time with my favorite MS infusion nurses, not yet. I’m no worse but certainly I’m not better.  The verdict is still out on this change.

Professional Conferences

2017 was a stellar year for conference opportunities as both a participant and an observer.  I was able to hear from some of the leading minds in MS research as an audience member and as a member of the press at ACTRIMS, and CMSC.  (American Committee for Treatment Research in MS and Consortium for MS Centers).  Sitting on patient advisory panels sponsored by MS pharmaceutical companies also happened this year and I learned more about the work of EMD Serono and iQuity. I also attended the annual Health Literacy Conference in Baltimore, which focused on how we communicate health information, and I did a plenary presentation at the UT San Antonio Health Disparities Conference and chaired a panel for the Drug Information Association annual meeting in Chicago.

iConquerMS Research

My own research interests continue with the growth of the iConquerMS patient network. We have approximately 4,400 people with a personal interest in MS enrolled and sharing their own health data.  I still pinch myself in disbelief that I get to work with the amazing people at Accelerated Cure Project for MS. We have made application to develop a learning health system focused on MS, and look forward to further developing this concept with experts from across the country. In September over 40 dedicated MS advocates gathered in MS to map out the future of iConquerMS.

iConquerMS 2017 Leadership Summit (photo courtesy of ACP)

Healthcare Advocacy

There were also great opportunities to rejuvenate and refuel my passion for advocacy by meeting with other amazing health care advocates at PCORI’s annual meeting (where I shook Alan Alda’s hand, and was moved and inspired by Freddie White-Johnson and her work with the Fannie Lou Hamer Cancer Foundation), HealthEVoices 2017 sponsored by J&J/Janssen, and Connexions2017 hosted by HealthUnion.  These 100’s of people aren’t just focused on MS, but a wide variety of health and social justice conditions, and face many of the same challenges such as access to care, affordable medicines and searching for cures. I have made friends with so many wonderful, compassionate and dedicated advocates who work hard every day to improve the lives of everyone.

I attended the Ohio NMSS Chapter annual MS Advocacy day in Columbus visiting state lawmakers, and I also continue to advocate using Twitter (please follow me  – @lkay54) for MS education and political change.  #TheResistance needs us all to make sure the most medically and economically needy are not ignored, and speaking up regularly is one way I can contribute.

What’s next?

For only a brief moment can I stop and reflect on having done so much in 2017, because there can be no rest until we find a cure for MS. Though I must admit each event I attend requires many days of recuperation time.There’s already a lot on my calendar, and 2018 should bring even more opportunities to be a voice for the MS community. I hope you will find your own voice and join me – we’re really in this together.

Wishing you well,

Laura

A Familiar Tale

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It was the daily routine: wake, dress, pop a handful of pills, and then slowly make the way out the door.    Each morning begins with the same question, what is the day going to hold?   Not daring to look back or forward, she focuses to stay in the moment – life at age 55 could be so much better but she realizes it could also be worse.  She wanders home after being out for the day, feeling the stress through her legs, torso and up into the brain.   Life is sure a challenge living with MS.  She eases into the routine of taking more pills, selecting a spot on her weary body for the next injection, and pauses to think how much better life could be if it weren’t for this damn multiple sclerosis.  Physically spent, she drops heavily into her favorite chair and the fatigue washes over her.  Almost instantly, she falls into a heavy sleep.

 

When she awakens, it’s with the usual sluggishness that tells her the body is again under the spell of MS and awaiting the next pharmaceutical jolt to get moving for the day.  She reaches to the table beside her and is immediately gripped by panic  –  Where are the pills?  Her home has a lineup of bottles and elixirs and syringes, all in order and serving a purpose – although not perfect, these medicines slow the progression of her MS and keep her moving. Where are they now??

 

She tries to stand but can’t move – looking down, she is gripped with confusion because she is not in her favorite easy chair but seated in a wheelchair.  How could this have happened ?  She was taking her medicines and although life with MS was a struggle, she was still functioning.  Why was she no longer moving on her own?  She releases the brake and wheels herself across the room and catches sight of a reflection in the mirror – it is a younger vision of herself, possibly no older than 25.  She is confused and spins around to head the other direction and is faced with a calendar hanging on the wall open to 1985. How could that be?  Slowly it occurs to her that she’s no longer in the present, but has somehow slipped into an era where there were no treatments for MS and people were left to languish, destined to finish the final years of their  lives in wheelchairs or worse.

 

She closes her eyes and feels the anguish of helplessness well up inside – at least in her present day there were options with disease modifying therapies.  Here there is nothing but a feeling of hopelessness.  She closes her eyes, and drops her head back, thinking of how someday things  will be different.   Surely a cure can’t be that far away, can it?

 

She allows herself to be lured into that almost unthinkable  thought – a world without Multiple Sclerosis – and startles to find herself whole, as if stepping out of a cloud onto a movie set.  Everything’s perfect, including her body, except for the added years. She may have aged, but she immediately recognizes she hasn’t felt this strong and connected in decades.  How could this be? She grabs a nearby computing device and quickly searches and finds that MS has been cured.  Ways to remyelinate the body were discovered in labs, a vaccination was developed, the cause of MS was found and the risk eradicated, and no one will contract this disease again.   Overjoyed, but also perplexed, she wonders how could this have possibly happened?

 

Reading beyond the headlines, she finds the answer –  Just as brave people with MS had offered themselves for trials to study ways to treat MS, the next generation of forward thinking people gave even more – they gave their history, their samples and their ideas, and together formed the big data that allowed researchers to deconstruct MS once and for all.   She’s left smiling with gratitude to the people who made the evolution of MS care possible.

 

Yes, this is a Dicken’s of a tale, but not so unimaginable.  Multiple Sclerosis research of the present, past and future is shaped by people living with MS. When we commit our time and resources to help, we build on what others have contributed to help move closer to a world free of MS.   Join me in sharing your MS history and ideas at https://iconquerms.org , the gateway to our future and the time when a cure is found.  Don’t wait until tomorrow – do it today!

 

Wishing you well,

Laura