You & I Conquer MS

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iConquerMS™ sounds like a solitary activity, doesn’t it? But imagine if a bunch of us with Multiple Sclerosis got together and from all of us sharing notes on our individual histories we develop new data and ideas that will give researchers a bigger look at MS from our experiences.

Moving data from being a single contributor to collecting the data from many is often called BIG DATA and iConquerMS™ is looking to create some of the biggest data yet on MS.  We can’t do this alone – we need each and every one of you to join.

iConquerMS™ is an online patient portal led by the Accelerated Cure Project (ACP),  a non-profit organization that  has the ultimate goal – to find a cure for MS.   ACP received the funding from the Patient-Centered Outcomes Research Institute (PCORI) to develop iConquerMS™.  I have been involved with ACP and this project for over a year and can say I have never worked with a more sincere and dedicated group of professionals than their small but mighty staff. They have earned my trust and respect.

Remember the part of PCORI that stands for Patient Centered?  I am proud to say that the majority of people on the Governing Board, and the other committees that are overseeing iConquerMS™ and making the critical decisions and choices are just like you and me – people with multiple sclerosis.  This project could not be more patient centered than it is already.  Patients helped design it, patients run it, and it will be successful because patients will join and contribute their own data.

As people living with Multiple Sclerosis we often complain that we aren’t recognized as experts on the disease.  Who else besides us really knows what it is like to live in a body with MS?  We have knowledge that others don’t … our own experiences.  And now, through iConquerMS™ we can share those experiences and our information and together all of us are poised to make a difference.  If you’ve paid attention to the medical news in recent years, patient centered care is part of our health care reform – isn’t it about time you and I are the important ones in our health care?

The idea behind iConquerMS™ is really quite simple  -there is a web portal at iconquerms.org where people with MS create an account, complete some basic surveys, share their health records, and propose questions that researchers might study.

I am also happy to tell you that every one of the major MS organizations in the United States have endorsed iConquerMS™, including NMSS, MSAA, MSF and CanDoMS.  Not only have they endorsed it, leaders from each of these groups participate on the various committees.  They believe in the work of ACP and what iConquerMS™ can do for the future of MS research. There is a lot more information about this project, who is involved and what you can expect on the website and I hope you will take the time to learn more.

This is my brief outline of what you can expect to do when you join me at iConquerMS™:

  • Register at iconquerms.org. You will find informed consent information that tells you the details on how your data will be used and how it will be de-identified so your individual identity is not attached to the records
  • Enter your demographic data – we really do need to know those basic things about you to help figure out where you fit in the Big Data picture
  • Complete some surveys about life with MS –you have probably done these at other times for your doctor but are very important to add to our Big Data
  • Share your electronic health records – there are great instructions on how you can do this and you can always contact someone at iConquerMS™ for help if you get stuck on this part
  • Submit your questions of what you think researchers should take a closer look at – the research committee, made up of people with MS and key scientists will sort through our questions and make recommendations
  • Then share your experiences with iConquerMS™ with everyone you know – to gather really Big Data, we are aiming for 20,000 participants and we need your help to spread the word and recruit others
  • Expect to receive updates from iConquerMS™ via email (you can always opt out of these) on data gathering and research interests

I won’t lie and tell you all of this is easy – because it isn’t. It’s going to take some time to work through all of these bits of information and iConquerMS™ is designed so you can start and stop your entry of data when you need to take a break.   But it obviously hasn’t been easy to find a cure for MS either since that hasn’t been done yet – and who knows what one key piece of our collective information might unlock the answer.

Isn’t it  worth our time and efforts to try to find the answers? I want to be able to say we conquered MS  through iconquerMS™.  This is only going to happen when we all join together and I hope you will accept this invitation and register today.

Be well,

Laura

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PS BEAR WITH ME WHILE I TRY TO ELIMINATE THE ADS FOR THIS SITE.  I UPDATED MY SHARE BUTTONS PROGRAM AND AM NOW TRYING TO TURN OFF THE ADS. I DO NOT AND WILL NOT ADVERTISE ON MY PERSONAL BLOG.  THANKS, LAURA

 

 

MS Support in the headlines

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It was a busy week for announcements in the media for new programs that will feature “big” names  for some big name players in MS.

The first is the news that Brigham and Women’s Hospital in Boston will team with others to open the Ann Romney Center for

Neurologic Diseases in 2016.  Romney and her husband Mitt – yes, those Romneys –  have talked openly about her life with MS and they will lead a $50 million fund raising campaign this next year.  I have not seen how much they personally donated, but the sum must have been significant to have the center  named after her.  The center will do research work on primarily five neurologic disorders: MS, ALS, Alzheimers, Parkinson’s and brain tumors.  We all know there are over 2.2 million people worldwide who live with MS, but we are just a small part of the 50 million who live with all of these diseases combined; research for these is seriously underfunded and this commitment of resources is significant.

 

Other news from the Boston area came from the launch of new patient outreach initiatives by MS pharmaceutical companies Biogen Idec and Genzyme.

 

Biogen’s MS Blueprint™ features Gretchen Rubin as the celebrity spokesperson.  Rubin authored The Happiness Project, a New York Times Bestseller, about living in the moment and allowing how we face each day shapes our future.  She will be sharing tips and

From the Biogen Idec press release, “Much like my happiness project has allowed me to focus on the positive and bring more joy to my life, the MS Blueprint program is designed to do the same for the MS community,” said Gretchen Rubin. “I believe every small step—including the activities achieved through MS Blueprint—is a victory toward living a more enjoyable life. When you feel every day reflects how you want your life to be, that’s when you’re truly happiest.”

The release goes on to explain how the program will work.  “By regularly visiting the MS Blueprint website, those impacted by MS can continue to set new goals, create new MS Blueprints, and contribute their suggestions for themes and activities they would like to see added to the site. In addition to the personalized activity plans, the website features frequently asked questions about living with MS, and a blog from Gretchen on how to incorporate happiness into your daily routine.”

 

I wonder if she developed the title of happiness expert during her years as a student at Yale Law School. Her bio from Wikipedia (yes, I hate to quote them but it was easily available ) reads: ‘Rubin received her undergraduate and law degrees from Yale University, was editor-in-chief of the Yale Law Journal and won the Edgar M. Cullen Prize. She clerked on the U.S. Supreme Court for Justice Sandra Day O’Connor and served as a chief adviser to Federal Communications Commission Chairman Reed Hundt. She has also been a lecturer at the Yale Law School and the Yale School of Management. She lives in New York City. She is the daughter-in-law of former US Treasury Secretary Robert Rubin. It sounds like she has a lot to be happy about every day and could probably give some tips about finances.

 

I took a few minutes to explore MSBlueprint and found an easy to use site, surprisingly free of any advertisements for their MS drugs, and constructed a sample blueprint list for myself to see what the site it about.  I’m not familiar with Rubin’s writings, but will soon be if I use this for a while, since it appears the helpful prompts and tips will be given in her blog.

 

The other program unveiled was Lights, Camera, Take Action on MS™, announced by Genzyme.  Madeleine Stowe, the television and film actor, is at the center of this new campaign.   I am not much into following the careers of people on the screen, so I didn’t know much about her. She grew up with her father who had MS, and I understand he died at a fairly young age over 20 years ago, in an era before the disease modifying therapies were available.  She can talk from her own personal experience as a caregiver for a loved one who had this disease from that time.

Stowe,  again quoting from Wikipedia – “appeared on stage and television in early career, before her breakthrough role in the 1987 crime-comedy film Stakeout. She later starred in films Revenge (1990) Unlawful Entry(1992), The Last of the Mohicans (1992), Blink (1993), Bad Girls (1994), 12 Monkeys (1995), The General’s Daughter (1999), and We Were Soldiers (2002).

Stowe had left the movie screen in 2003, and in later several years starred only in two made for television films. In 2011, she began starring as Victoria Grayson, the main antagonist of the ABC drama series Revenge. For performance in show she was nominated for a Golden Globe Award for Best Actress – Television Series Drama in 2012.”

 

 

Thanks to a promotional outreach  from a marketing firm to bloggers to talk about this program, I was able to speak by phone with Dr. Ann Bass, the director of The Neurology Center of San Antonio and the lead neurologist for this program. Lights, Camera, Take Action on MS will be comprised of  three live events held on different dates in Chicago, Orlando and Houston.  The Chicago and Orlando events will also be available to view on the web and taped for on demand viewing at their website.  Each of these events will last about two hours, and have a panel comprised of Stowe, Bass, other as yet unspecified medical lifestyle support people, and their patient ambassadors.   I won’t be anywhere near any of these locations to attend the live program and will have to settle for the rerun.

 

The panel members will talk about their drug, of course, because that is required by the FDA laws governing contact with potential users of their drug.  But Bass says the program will focus on more than just the Genzyme products and include mini-seminars that will offer information on ways to gain better health and be more active as people with MS.  She is particularly excited to share the perspective Stowe will add to the caregivers’ side of this disease; this is a special group of people that does so much but continues to be in the background with little support or resources

 

I applaud these efforts to reach more people with MS through research and patient support programs.  The patient programs come under criticism from many because ultimately the companies want to expose us to their particular product in the hopes we will use their therapy, but I find they can also provide valuable support, especially for the newly diagnosed.  No one should criticize the efforts of the Romneys to give their valuable backing with their high profile support to an important project.

 

Like I said, Big Names are being used for these new programs and I hope that helps to generate Money, Motivation and Knowledge, all of which we could use more of.

 

Be well,

Laura

Post Script – An addendum to this post on Friday afternoon 10/17:  You can add Novartis to the mix of promotions using star power for MS campaigns.  Novartis will unveil their program with David Osmond, of the Osmond family, next week.  According to the Wall Street journal – ““I Can Do This,” the new music video from David Osmond of the musical Osmond family, has the clan’s trademark upbeat positive style, with images of men and women overcoming barriers and obstacles to reach a goal.”   Clink on the link to view the video.

I guess we should stay tuned for who is next to bring on a ‘star’ to help us with our attitude toward life and activity.    Four major programs unveiled in one week might be a record for the MS world.

 

 

 

 

 

If you only do one thing

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Do one thing today to make this a better place – 

I wrote this entry for World MS Day in May, but the message is still needed – the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has still not been passed by our Senate.

http://multiplesclerosis.net/news/armchair-activism-world-ms-day/

 It is scheduled to be before the Committee this Tuesday, July 22.

You can read the details in in my blog, but in particular I urge you to notice that Ohio’s Rob Portman is one of the few who are holding up this important ratification. You can reach Senator Portman on twitter @PortmanPress,
FB Senator Rob Portman

Email him using his webform -https://www.portman.senate.gov/public/index.cfm/contact-form
or the old fashion way of sending a letter or making a phone call
The Honorable Rob Portman
United States Senate
448 Russell Senate Office Building
Washington, D.C. 20510-3506
DC Phone: 202-224-3353

There are others on this list who also could use hearing the voice of reason supporting this resolution.  if you need help tracking down their contact information, let me know.  I am happy to help.


I thank you and the world community thanks you.

Laura

 

Experience Shapes What we See

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We have an assortment of wildlife living in our suburban neighborhood, much beyond the normal squirrels, chipmunks and song birds.  We have birds of prey – the red shoulder hawk in particular – that keep watch from above.  Another fox family has been born in the thick trees of our neighbor’s backyard and they wander around day and night.  In case you still wonder what does the fox say, it is an other worldly squawking and calling sound, especially in the middle of the night when we are trying to sleep.

 

Most recently we have an adult doe who has been making the rounds of our back yard- she wanders through, nibbling on the weeds of which there are plenty, and she doesn’t seem particularly bothered by my stepping out on the deck to watch her and snap a photo or two.   I posted this picture on my Facebook page and immediately was given a lesson in how we apply our own experiences and perceptions to a particular situation.

 

What do you think of when you see my pictures?

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I am always in awe of these creatures even though I know they are not necessarily benign.   Many people responded to the beauty of this deer peacefully lounging in my backyard.  Who could argue with that view?

 

 

 

 

A friend immediately chimed in that she wished she could see the beauty but all she could picture was ticks.  You see, she had been ill for several years from Lyme Disease, a serious infection caused by the bite of the tick carried by deer and other wildlife.  From her experience, there was nothing beautiful in my photo.

 

My sister had the  flashback of having extensive damage done to her car when one of these beautiful creatures bounded onto the highway in front of her one autumn evening.  Our daughter had that same misfortune and totaled her car with a deer strike, but she saw this backyard deer and was still mesmerized by its presence.

 

Then there are my hunter friends  – they spend hours and more hours in fields and woods waiting to cross paths with a deer this size.  They are also the same people who process the meat and eat off their kill for many months.  Their pulse quickened a bit when they saw the picture of this deer just hanging around in my yard.

 

 

deer 2 What does this have to do with anything other than I have some interesting  photos of wildlife in my otherwise quiet neighborhood?

 

 

I offer this as an example of how people can take the same thing – in this case the deer– and come away with very different interpretations of what they see.  I see this happen quite often when people with MS read the same news or research and come away with different ideas.  Take CCSVI or the latest diets or hyperbaric oxygen treatment or any of the other unproven MS treatments and you’ll see this in full action.  There is such a strong desire, no make that a strong need, to find a cure for MS, that it is easy to interpret  the headlines into something other than what it says based on our own biases and preconceived ideas and needs.

 

Each cure we read about means we also must stop and wonder how are we reading the news – is it because it says what we  want  depending on our perspective and experiences, or is it based in fact?  I am a Pollyanna by nature and want to think one of these ‘cures’ might really work,  but the realist in me recognizes the science doesn’t hold up to the proof process.    That doesn’t mean I can’t still stop and wonder if the next ‘cure’ might hold up, and want to learn more about it  – but have to keep in mind my personal perspective helps to complete the story.

 

I will also look at this deer the next time and not only see beauty, but wonder about the ticks and look closer for any bow and arrow yielding hunters closing in.

be well,

Laura

 

 

 

 

 

 

 

The Advertising Pitch

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We had a good laugh as my husband sorted through the coupons that arrived in our mail – it was an envelope full of special offers and near the top of the stack was a coupon for breast augmentation – only $3,850, including anesthesia.  Boy I’m glad to know at least they knock you out while you have this done.  A few more coupons down in the stack, just after the one for the $39 hour massage to celebrate a new studio opening, was an invitation to come to a local funeral home to do our pre-planning.

 

What happened to the simpler times when these coupons involved buy one get one free pizzas and special deals on moonlight bowling? The face of marketing has changed, complex services are being peddled as common merchandise; even the pharmaceutical companies are doing all they can to get their product or service on our radar.

Websites that talk about Multiple Sclerosis are often populated with ads – you know the ones that are promoting the latest treatments or product that might make our lives better.  The cost of maintaining a website, complete with a staff to keep the content fresh, isn’t cheap, and selling ad space to pharmaceutical companies is one way to bring in operating revenue.

 

Virtually all of these ads are specifically targeted to me and what they are guessing might be my interests.  Tracking of what I look at online is captured through cookies and pretty soon,  ads that mimic my interests pop up on my screen.  I was shopping for some special style of orthopedic shoe and for the next month,  my computer screen was visited by shoe ads by a variety of different manufacturers.  Of course I am regularly looking at multiple sclerosis information on line and those visits trigger ads for MS treatments to populate my viewing screen.  Often those are from reputable companies, but I also get ads for special diets and unproven surgical procedures performed in exotic locations like Costa Rica and Bulgaria.

 

When doing research for writing, the  search terms  I might use often lead to an interesting  assortment of pop up ads – try it yourself and see what you get if you google for MS and sexual dysfunction.   Or MS and incontinence.  Or MS and marijuana.   I’m sure you get the gist of my point, when I search the right words,  I get lots of Viagra, adult toys, catheter supplies, and bong  advertisements thrown my way.

 

I’m resigned to those ads and how most websites have to do business with advertisers to cover their expenses and make a profit. Most of them I could simply ignore, but I still often have trouble with some of those ads, mainly because their fancy colors and animation often interfere with my vision, focus and also the speed of my computer.  I could turn off the cookies in my computer, but many sites these days require the cookies to be set before you can even enter their website.

 

I found a great ad blocker software that is free – they ask for donations to support their work and I gladly give them a small amount of money to support their product – and it keeps most of the pop-up ads away from my computer.  Since I installed this software on my new laptop in February, the counter tells me I have been spared seeing   over 100,000 download ads.

 

I say most, because even AdBlockPlus lets some ads through – they call these ‘acceptable ads.’  It is an acknowledgement that advertising revenue is necessary to sustain most of these sites.  There is a long list of criteria that makes an ad acceptable, and this includes no animations, nothing with sound and preferably text only.

 

Social media sites such as Facebook and Twitter also generate income for their sites by selling prime spots on their pages to advertisers. Unfortunately, the ad-block software doesn’t stop those messages and in between messages from friends and sharing jokes and pictures of children and grandchildren, those ads slip into our feeds.

 

Advertisers have their fleeting chance to get us interested in their products and it takes a lot these days to get our attention since we are bombarded at what seems like every opportunity.  Whether it’s a mailing to my home or ads on my computer, most of them end up deleted or in the trash – if I am shopping for MS drugs or breast augmentations, I want to do my own searching.

 

Be well,

Laura

 

 

 

 

MS Relapses- It’s Complicated

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Bottom line – I am in a relapse right now, and have optic neuritis for the first time that I know of, but I had no idea.  I just knew I haven’t felt good for quite some time and have seen a lot of doctors and paid a lot of copays, trying to figure it out.  It can be so hard to separate the MS from the other changes in our bodies.

Here’s the clues we either overlooked or discounted as something else –

 

In October, my walking deteriorated and I went back to physical therapy to do more  gait training. By December, I  developed a hammer toe, probably from doing planks in the gym with my trainer.  It’s a move where you support the body on the tips of the toes, and I could feel it was uncomfortable but I did them anyway.

 

I saw my podiatrist/surgeon and he gave me a plan – try orthotics for my shoes (which  I did) and come back in 8 weeks if that didn’t help.  It took a few weeks to get the orthotics right because the maker had misread the prescription and were treating me for something else.  I just knew they weren’t right and kept going back until it was sorted out.

 

Late February, I was unable to stand up pushing off with my right leg – I had to push off on the edge of my desk, the arms of my chair or even the back of the toilet to get to a standing position.  It then became very painful in my calf- it wasn’t red or inflamed like an infection, but nonetheless my husband dragged me to the doctor for an exam, the subsequent ultrasound did not find anything wrong, specifically looking for a deep vein thrombosis (DVT) also known as a blood clot.  This lasted about 4-5 weeks and gave me something new to work on with my trainer – standing up, thinking the repeated work on that task would benefit the muscles.  I was fairly certain since there was no DVT, this had to be associated with my hammertoe, although the pain was separated by a good 10-12 inches.

 

A persistent UTI created havoc and required multiple rounds of antibiotics – setting up the perfect symptoms for a pseudo-relapse which could be treated by antibiotics.

 

During these several months, my energy level plummeted and I saw the MS Nurse about the fatigue – we adjusted some of my meds and scheduled a follow-up.  The next time I was able to tell her it wasn’t much better so we made more adjustments to my meds.  We discussed that my annual MRI was due in June and we set it up so I could get it done one week before my next appointment with my neurologist.

 

Then my hammertoe foot grew to be very painful with every step , the podiatrist ordered an x-ray, and blood tests (to look for infection) and those were clear.  Then he ordered a CT scan which also showed nothing, but my foot was still painful. As a final step, he ordered an MRI, which shows I have a very nasty stress fracture, most probably caused/made worse by my gym session and especially those planks – this is not the first time I have discovered that exercise can hurt you. Consequently I spent 5 weeks i n one of those knee-high  black velcro boots  holding my foot hostage and making  my wobbly MS walking style even worse.  I was off-balance continuously and moved around as little as possible.

 

The MS nurse said even if I were in a relapse with all my fatigue and balance problems, they would probably not treat me for a relapse because steroids would slow the healing of the stress fracture.  Most probably the fatigue was from the injury/trauma to my leg and hauling that extra weight on my leg.

 

At my last annual eye exam, the ophthalmologist said I was probably about ready to move from reading glasses into prescription strength lenses.  During March Madness I noticed the picture on the television was a bit blurry and reading those small box scores were almost impossible to guess correctly. My distance vision while driving was also decreased  – I have always had virtually perfect distance vision and I attributed this change to my aging, hearing the words of my ophthalmologist- she said to call when I knew it was time for real glasses.  I did call and set up and appointment, figuring the time is now for prescription glasses .

 

Through this entire time, my fatigue never went away.  I have been constantly exhausted, but pushed through with doing the daily activities I had to do, such as go to work.  But there sure has not been much extras done beyond the basics.  Everyone around me suggested I slow down, but weren’t seeing that I was already at a crawl.

 

My brain MRI was done, and the following week I am back at the clinic for my annual neuro check.  By now, I can only read clearly to the second line of the vision chart, but I can guess at the letters on the next few lines – I have been reading that same chart several times a year, since 2008, and although I have not memorized it, I do recognize the letters and shapes easily.  I tell the nurse I have that eye appointment scheduled for next week and know I need glasses.

 

My neurologist starts our appointment by getting my list of symptoms – what’s bothering me.  I go through the above list and he is taking notes.  Then has says let’s look at my MRI results- he confesses he had not had time to look at it yet. Yep, lesions are still there but nothing new or alarming popped up.  BUT he looks at the radiologist’s report and say he trusts her with his films – very unusual since he has always said about other radiologists’ that he doesn’t use their reports.  She notes that it appears I have inflammation of the optic nerve, even though I didn’t have the optic nerve MRI specific test run.

 

Before he reads further, I tell him my guess would be my left eye – and yes, there it is, on the image and in her report.  I leave the neuro appointment with the news I have ON, a prescription for steroids in hand, and I left shaking my head that this could have been going on for the past six months and I hadn’t a clue many of my current problems could be MS and not just aging and life in general.

 

It was somewhat a relief to know there is an explanation for most of these symptoms,  but bothersome to me that I had not connected the dots to see it was almost all due to my MS.  No matter how much I think I know about MS, I still need that doctor to help me sort it out.   How often do you find yourself second guessing about relapses if they aren’t a dramatic change to your health?

 

For a change, while I’m usually saying I can’t blame everything on the MS, in this case I probably should have …. It’s hard to guess just when this relapse started, but I am thankful I didn’t spend money on new glasses.

 

 

World MS Day

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It’s a rather somber thought – this isn’t a day for balloons and parties, but a call for awareness that Multiple Sclerosis is  a worldwide problem and continues to increase.  2.3 million people have now been diagnosed with MS.

 

Please join me in observing World MS Day 2014.

be well,

Laura

 

http://voice.adobe.com/v/So9rdNBXeVr

 

Why Write An MS Blog?

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At a recent MS Bloggers Summit, hosted by EMD Serono, the facilitators posed the question– why do we blog about MS?  It’s a question I have considered more than once  – what motivates me to do what I do and put the time and effort into writing, blogging and participating in MS patient forums rather than just deal with my own needs?

It was a great opportunity to meet  these other bloggers to discuss our approaches and motivation for being online. There was a small honoraria and travel expenses provided by EMD Serono for this Blogger Summit.  They showed us a small part of their facility including their patient call center, and spent the day mainly asking us questions and engaging us in round table conversation, including the ‘why do we blog’ question.

Do you remember the time when you were told that you have Multiple Sclerosis?  Of course you do – that is a moment that gets burned into our psyche, much like remembering where we were when hearing major news events, such as the attack on the World Trade Center or the explosion of the Challenger space shuttle.   I’m not sure if anyone has studied that moment when we hear that we have MS, but I would guess that almost 100% of us had the sense of isolation and wondered how we would get through this.  It is the type of news that will make us stop and take inventory of where we are in our lives, and what we strive to still accomplish.  After I got through the initial shock of this news, I crawled into my computer and Dr Google and a very good friend helped me find compassionate strangers online, willing to answer my questions and hold my virtual hand through those early days.  These new friends kept me grounded and I like to think I am paying their kindnesses forward.

I always liked to write, but I have not spent much time practicing that craft in recent years.  I was never particularly skilled at fiction and prefer  personal narratives, and particularly the stranger than fiction types of tales.  When my diagnosis of MS came along, it was a subject just waiting to be explored, explained and shared.  What could be stranger than the truths of Multiple Sclerosis?

There is also the education side of blogging. Having worked in one type or another of education for 25 years and even longer as a parent, scout leader and school volunteer, there is a sense of excitement and fulfillment  in learning something new and then being able to share that knowledge with others.  Look around the MS community and it’s easy to see there are a lot of people with questions who are eager students wanting to learn.   Blogging and education are a natural fit.

The  Bloggers Summit brought together  ten of us who are willing to help  others learn about MS and share coping tips based on  our own experiences – we are just a small fraction of the hundreds of dedicated and gifted people  you can find on the internet blogging about MS.  If you polled them as to why they blog, I can almost guarantee that somewhere in their answers they are going to mention those people newly diagnosed, frightened and unsure as to what to do next.  That same moment that we had when hearing our diagnosis is repeated over and over, and by writing about MS, we can give reassurances to the newly diagnosed that life does indeed go on.

If you blog or participate in online forums, I would love to hear your reasons;   I know mine – it’s mainly about connecting with you.

Be well,

Laura

 

 

 

 

 

 

 

My Left Foot

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“When muscles are overtired, they are no longer able to lessen the shock of repeated impacts. When this happens, the muscles transfer stress to the bones, often times leading to small cracks or fractures. The most common sites of stress fractures are the second and third metatarsals of the foot,” according to The American Academy of Orthopedic Surgeons

 

I found this on the internet and you could have knocked me over as I read it – but I have to say knocking me over is fairly simple anyway, thanks to my lack of balance and coordination that I blame on my Multiple Sclerosis.  MS might not be entirely responsible for my current problem, but it might as well take the blame for this one since it is hanging around.

Back in October  I recognized that I was having a serious decline in my walking and my left foot was somehow involved and I requested another round of Physical Therapy.  By  December, my PT identified I had a hammertoe developing and I immediately called my podiatrist – the course of action he proposed was 1) get fitted for orthotics and see him again in 8 weeks to report if that helped;  2) if orthotics didn’t give me relief, and he was fairly certain they wouldn’t, come get an injection of cortisone in that toe joint to relieve the pain and inflammation;  and then 3) surgery if #1 and #2 failed to give me improvement.

 

#1 Was fairly easy to do, but it took 3 weeks and $250 to be fitted and have the orthotics made.  When the 8 weeks passed and I was feeling worse rather than better, I called to see him.  My mistake to have waited to call for the appointment because he had nothing available until June.

In the interim, in February, I experienced about three weeks of being unable to push myself out of a chair (or off the toilet) because of pain in my left calf.  Now I’ve had a pulmonary embolism before, probably caused by a blood clot in that same left leg after my bunion surgery, and since I could get no relief or muscle use, I knew it needed to be checked.  The Primary Care Physician (PCP) subbing in for my own doctor who was on leave, reluctantly ordered an ultrasound just to be sure something else wasn’t causing the problem.  Other than that, she had no idea what the problem might be, prescribed some Vicodin for the pain if I needed it, and sent me on my way.  That test came back negative and a week or so later I regained the use of that leg and I was no longer stranded trying to stand.

I must also confess that I continued to work out in the gym with my student personal trainer, but put a stop to walking on the treadmill and instead used the recumbent bikes for my cardio.  However, without thinking about the damage, i continued to do planks, which require an extension up on my toes.  Hindsight is always perfect, but I wish foresight had kicked in sooner.

Having MS has to have some benefits, right?  The neuropathy (read significantly reduced feeling in my feet) protects me from feeling all but extreme pain.   My left foot, however, had no intention of waiting until June and began screaming for attention through pain and swelling.    Fortunately the pain was only present when I walked on it – it doesn’t hurt while I sit or sleep, so I moved less and less.

It progressed where I could barely step on the foot without extreme discomfort and I made a desperate call to the podiatrist. That got me an appointment three days later to see him, but before that appointment he ordered an X-ray to look for broken bones, and blood work (to check for infection or signs of gout). When I finally saw him face-to-face and he had to tell me the x-ray showed nothing and he wanted a CT scan done, which with a few phone calls on my part, I managed to get completed that same day.  In the meantime he immediately put me in one of those cute little black Velcro shoes that make it impossible to bend the foot. I saw him the next week and was told the CT scan showed nothing, but he couldn’t ignore that something was going on since the foot was visibly swollen.  The next step ….. don’t walk on it and get an MRI.  This was scheduled fairly soon and I found myself in a room with the smallest  MRI machine  I’ve ever seen; it resembled a large washing machine and I spent 45 minutes with my foot propped in it. Did you know there is a 0.3T strength MRI machine?  I didn’t either until I met this Maytag version.

 

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Of course I always get copies of my MRI of my brain so I asked the same of my foot.  I had the weekend to review my images before I saw the doctor on Monday morning. If these had been of my brain, I have no doubt I would have immediately been put in the hospital for an intensive round of IV Solumedrol- the glaring hot spots scream ‘active inflammation.’

 

 

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This MRI image clearly shows why it feels with each step that fireworks are gong off in my foot

The doctor gave me the news Monday morning — he recommends surgery to fix the hammertoe which he believes is causing excess pressure on the third metatarsal bone and caused the stress fracture.  But wait, I protest, wasn’t there a #2 in this scenario? Why would I want to spend my summer hobbling on one leg (no weight bearing allowed on the surgery foot for 6-8 weeks while it heals)? So he agreed to allow me to try #2, the injection of cortisone, to reduce the swelling and give me pain relief, while I wear a new sexy knee high black Velcro boot for at least 4 weeks to try to allow the stress fracture to heal, I had the injection done under fluoroscopy the same week and I am now in a wait and see what happens mode.

 

 

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I realize the option behind door #3, surgery, is probable,  but being incapacitated in the winter months sounds a bit better, and I am hopeful the injection(s) gets me through a few more months or even a year or two if I’m lucky.

 

Which brings me back to that statement about muscle fatigue and stress fractures-  I found that bit of information when researching stress fractures and their treatment.  Stress fractures primarily occur in athletes, and especially runners who endure constant pounding in their leg bones, so that doesn’t fit my profile.  But don’t we also experience an extreme form of muscle fatigue thanks to our MS?   I still can’t blame my current woes on the MS because this is also the foot that I had bunion surgery done on over two years ago, and this appears to be a continuation of those problems.  But every time I think I have wrapped my head around the idea that MS is a disease of  the Central Nervous System something like this stress fracture comes along and challenges all that I think I know.

 

Be well,

Laura

 

 

 

 

 

 

MS Blogger Summit

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I had the unique opportunity recently to be  invited by a major pharmaceutical company to attend a gathering of people who blog about MS. The company, hereafter referred to as Pharma, found 10 of us from various regions of the US through our activities online and invited us to attend their first Bloggers summit in Boston. I’ve not identified them by name because I signed an agreement to not share any proprietary information we learned and to not mention them or their product by name in my blog without their prior approval.  If you are really curious to know who was the host you can quickly google the location and narrow it down to one choice.

 

Pharma hosted a lovely pre-summit meet-and-greet dinner, giving us the chance to gather in person before the next day’s session.  It was great to meet up with people who I have been admiring from afar for their work as bloggers and MS advocates. Unfortunately, most of us were tired from a day of travel, and facing an early morning wakeup call we didn’t make it a late evening.    Too bad we couldn’t converse into the wee hours of the morning, because we all have lots to say.  It’s been a long time since I’ve been around for  last-call in a bar and it would have been interesting to do it with these fellow MSers. I got the impression it’s been a long time since any of us have even made it to the 11:00 news.

 

This Blogger Summit was held at Pharma’s headquarters in Rockland, MA, and was a non-stop day of presentations and discussions.  The facilitators had the difficult task of keeping us on schedule – sharing answers from ten diverse perspectives on their question why we blog, could easily consume an entire day.  Remember, we are bloggers and we are never short on words.

 

Anyone who knows me well, understands I approached this summit with skepticism and more than a touch of distrust for Pharma gathering us in the same room.  I have a love-hate relationship in thinking of the roles of Pharma and MS- I don’t delude myself that  they are a business and as such have a responsibility to their stakeholders to make a profit but as I have come to know individual people in the pharma business and I believe they are deeply committed to the MS community and finding ways to improve our lives.  I don’t buy into the conspiracy theory that the pharmaceutical industry wants to keep us away from a cure, so it protects their profits, because once they find the answers for MS, there are plenty other neurological diseases waiting to be solved.  But I still don’t ever let myself be lulled into believing they are anything more than a business, but we need Pharma and all the other pharmas to develop these treatments for our disease – our government sure isn’t spending tax dollars on research. Hence the love-hate thing.

 

I expected to hear more of the official company promotion of Pharma’s  MS products, and was surprised there was very little discussion of any specific product.  Instead, Pharma wanted to get to know us better, and spent most of the day asking  us to share experiences and perspectives.  Pharma did share a few proprietary items about upcoming patient outreach efforts they are working through but I am not able to share those right now, due to a confidentiality agreement they asked us to sign before participating in the summit.

 

We were given a tour of Pharma’s call center – that part of every MS drug company that all of us are encouraged to use if we are taking a disease modifying drug. It was a fairly low key operation  and we were encouraged to ask questions of the people who answer those calls.  If you know anything at all about these operations, you know that there is only so much information they can share when we dial them up and ask our questions.  There are many rules and regulations imposed by the FDA on their contact with patients and unfortunately all too often we get back the answer ‘ you will have to talk with your doctor about that.’ The work force in this Pharma’s call center has a very low-turnover rate and the people we met again seem genuinely interested in helping people with MS.  As with all of these drug manufacturers, they insist that they can find a way to help every person get on an MS drug.  We just have to pick up the phone and call them and hope to connect with the right person.

 

Half-way through the day I was still wary as to what Pharma really wanted from us and then they did something unthinkable that pretty much won me over.  They served us lunch while a panel of speakers talked while we ate.  Yes, I like food, but that was not the crowning touch to this event.

 

As I told you, they had a full non-stop day planned for us and this working lunch was no exception.  The major difference was the panel was comprised of the head of US Medical Affairs, Neurodegenerative Diseases; the head of the MS Platform in Global Research and Early development; and rounding out this panel was the President and Managing Director of Pharma.   Yes, you read that right – THE  President of Pharma stopped his day to spend time with us, discussing the direction of the company and answering our questions.  We were given unprecedented access to the people determining this company’s MS programs, which to me demonstrated they are serious about listening to the people in the MS Community.

 

There were several other high ranking directors of different divisions of  Pharma who sat in for the entire day’s proceedings, again a clue that they realize there is a lot to be learned from listening to those of us with MS. The entire Blogger Summit was recorded for in-house use and it would be interesting to hear their interpretation of our day’s proceedings.  My  guess is they had to conclude what those of us who blog already know – we are a diverse group and the ten of us gathered for this Summit come at our life with MS from very different  approaches.  I often say if you put 100 people with MS together, you will come up with 100 different stories because the MS experience is particularly unique to the individual living with this disease.  This group was no different.

 

I will be writing more about this experience and my observations but by now I have well exceeded the number of words you probably want to read. This was an excellent opportunity to gather with other MS Advocates – the bloggers who were tapped to attend and the people who work for this particular Pharma – and continue my never ending education about Multiple Sclerosis.

 

Be well,

Laura