Monday, December 3, 2012

The Disruptive Innovations Event in London, as Seen From My Living Room

I was born into a generation that can remember when telephones had curly cords and rotary dials and the only color they came is was black because that's what color telephones were. We also got immense satisfaction from being able to slam the handset into its cradle, putting a physical exclamation point to the end of our conversation if the situation warranted it. When you dialed "0" you got a real live person. My Great Aunt Mary used to be a switchboard operator back when you had to ask them to dial the person you'd like to speak with. We always said that's where the stereotypical operator's voice with that nasally sound came from that you hear in old time movies because that's how she spoke. When she said my sister Lorraine's name it came out "Lo-ray-un".

So fast forward a half century. Things have changed. Phones no longer tether us to a wall or a counter or a desk. In fact, you can go into the middle of the nowhere with no person in sight for miles and still talk to someone because your phone is in your pocket. Always within reach.

Not only can you TALK to someone, but you can SEE them, too. If you plan on calling in sick to work you better look the part now and be phoning in your jammies from your death bed because it's not enough to sound sick from your beach chair.


You can now address a roomful of people in London while sitting in your living room in Florida. I know because that's exactly what I did last week.

After my interview with Craig Lipset of Pfizer (see this post for how we met) at the Disruptive Innovations conference in Boston this past September, I did some networking and met many amazing and influential people. By way of Pablo Graiver, from, I met Maneesh Juneja from who reached out to me.

Because of my patient perspective on how clinical trials are conducted – and my willingness to share it – I've got something to say that folks in the pharma arena apparently consider worth hearing. It seems that while many of these folks have dedicated their very lives to research, most have not ever come face to face with an actual volunteer subject nor listened to them expound on how a trial might be better designed from the patient perspective.

I am a focus group of one.

So there I was, up on the big screen with my 10 foot tall head sharing the story of my clinical trial (the TRANSFORMS trial conducted by Novartis for Gilenya, the first ever pill form of treatment for multiple sclerosis). I told them how it came to pass that I found the trial, and then how I could find nothing on the internet describing a clinical trial from a patient perspective.

So I blogged it here. (There's no link because literally, it was this blog. Right here.)

I decided that if I couldn't find the info I was looking for, then I was going to document my journey and let everyone know I did it. And if I can do it, anyone can because we all know by now that I am the biggest hypochondriac that ever lived.

I ended my talk in London (while sitting at my computer with no shoes on my feet, curling my toes into the carpet) with a sort of laundry list of things I'd like to see change in the world of research. At least those things which effect the end user experience.

I figured if I was going to be talking about how things needed to change, the least I could do was give some examples of exactly what I meant by that.

First off, that Informed Consent document (that is almost as thick as my whole set of 1960's World Book Encyclopedia that's all swelled up from having gone through a flood) needs some companion booklet to go with it. Sort of a chaser to help smooth out that bare whiskey dose of reality (and a whole lot of possible negative outcomes) that comes with it.

The informed consent document has to outline the purpose of the trial, the known side effects of the medication (everything they ever found out during earlier, even unrelated, trials), whatever adverse events might be predicted along with a very clinical description of the tests that will be performed to monitor the safety and efficacy of the drug along the way. The positive, upside of what they HOPE will happen seems like a byline or afterthought. Possibly a footnote1.

I propose a user friendly, brochure type of Guide to the Clinical Trial that tells you, in terms normal people can understand, what to expect. A brief outline of the goal of the study, along with pictures of the equipment they will use to test you, and pointers about making the tests go more smoothly (like drinking lots of water before a blood draw). Just something like a Chamber of Commerce version of "Welcome to the Trial".

It might sound silly but I insist it would have been a comforting thing to read after Googling the guts out of all the stuff I deciphered from the Informed Consent.

I also told them that the people who enter the trial, unless they are the healthy control subjects who are in it for the profit, are usually at their wit's end. Looking for relief from their illness and hanging whatever shred of hope that remains on this new drug I can't get anywhere else yet. And their biggest hope is that they aren't wasting their time taking a placebo. They are at their most vulnerable and need to be treated as the humans they are. With respect and  compassion.

I won't go into everything I suggested. I'll save that for another day. Let's just say I was well received and felt so honored to be asked to participate in this Health 2.0 event.

I still can't get over how I have tripped and fallen head first into the role of ePatient Advocate. I hope I can continue to represent for ePatients, clinical trial patients, plain old patients, and humans everywhere.

A big thank you to Maneesh and for giving me a platform from which to share my message.

I'm usually so excited about the advancements in technology and how rapidly they are coming out with new gadgets like top quality webcams, but this time I would have loved for my talk to have necessitated a trip to England. Ah, the down side of Skype.

1 Just an example, not a bona fide footnote.

Tuesday, November 20, 2012

What the Wall Street Journal Forgot To Mention About MS Drugs

Why does it surprise me and infuriate me every time I see sloppy reporting being done on the subject of Gilenya? Maybe this time it had that effect because it wasn't on some message board run by idiots who were doling out misinformation as if it were the word of God himself. No, this time I was caught off guard by The Wall Street Journal.

Jonathan Rockoff  wrote an article for The Wall Street Journal that was published today, November 20, 2012 entitled, "As MS Pills Debut, Doctors Prescribe a Dose of Caution". It appears that Mr. Rockoff didn't do much homework in researching his piece, or at the very least he chose not to include a lot of valuable information that would make his article more accurate and less skewed toward sensationalism. 

I'm certain the fear of a new medication probably sells more papers than dragging out all the pros and cons of all the available therapies, but for those of us actually suffering from multiple sclerosis and trying to do our own research, he's not doing any of us any favors.

For one thing, the article only interviews one MS patient who has only been diagnosed with MS for two years, has only ever been on one disease modifying drug (DMD), has always done well on the drug and has her MS currently under control.

Where is the counter balance of a person who is actually on one of the oral drugs, for example Gilenya, and has not suffered side effects and is doing well? Where is the person jumping from one injectible to another only to suffer horrible side effects or a lack of efficacy from them? 

No, he just dives right in and states, with no further explanation that this woman won't try one of the oral medications.

"Still, a talk with her doctor, Peter Calabresi, persuaded not to take a chance on a new drug."

Well, duh. The very next paragraph goes on to say:

"'I don't have any side effects, and it seems to be working very well for me. Why switch it?' said the 52-year-old from Rockville, Md."

Why would anyone who has been battling this disease FIX something if it AIN'T BROKE?? If you aren't having any disease activity, you have a stable MRI and you are having no side effects, then WHY would you take a chance on anything, new pill or otherwise?

The whole article, from title to the way the "facts" are presented seem to be skewed to try and frighten people who don't have all the real facts.

For instance, the only mention of side effects of the injectibles that Mr. Rockoff made is in this sentence:

"Yet the injections can cause welts, itching or scarring."

He neglected to mention side effects of Avonex, one of the many interferons, like possible flu-like symptoms several days out of the week, possible depression and/or suicide. Likewise, he failed to mention side effects besides injection-site reactions from Copaxone such as an immediate post-injection reaction (This reaction, which usually occurs only once, includes flushing or chest tightness with heart palpitations, anxiety, and difficulty breathing.)

I researched the interferons and wouldn't take them due to the risk of flu-like symptoms that would surely impact my Quality of Life (as would depression and suicide, no doubt).

I DID take Copaxone for the first eight years post diagnosis. I had injection site reactions daily, getting huge, itchy, painful welts sometimes as big as the circumference of a tea cup. It felt like I was injecting battery acid under my skin, very painful. And even though I reported it to Shared Solutions, Teva (at that time) refused to acknowledge that the hardened dent I had at all of the injection sites on my body had anything to do with the use of Copaxone.) Now I see that on their prescribing information sheet they make mention of both "injection site fibrosis" and "injection site atrophy".

It would have been the responsible thing for this Mr. Rockoff to do some real homework regarding all the available options and present them in a format that one might compare the risks/benefits profiles of each side by side. No, he took the easy, sensational way out and glossed over all of the injectibles, choosing to focus his grandiose diatribe on how scary these new oral medications are and giving a not so subtle message that we ought to beware.

Well, here's the counterpoint, Mr. Rockoff: I am an MS patient who has tried -- and FAILED -- on Copaxone. Not only did I have terrible side effects which made being compliant a day to day battle, but it did nothing at all to slow my relapses OR my progression.

I started the clinical trial TRANSFORMS in August 2007 and have not had a single relapse since shortly before entering that trial. It was a double blind, double dummy trial in which neither I nor the researchers knew if I was on the real Fingolimod (Gilenya) or the real Avonex. This study had no placebo but was a study to compare efficacy and safety of Fingolimod to an established, approved MS DMD, Avonex. I did a shot once a week and a pill every day. At the end of the extension phase I was unblinded and told that I had been on the real Fingolimod since the very first dose on August 20, 2007. That's over five years of having not even one single relapse after relapsing at a rate of 3-4 times per year on Copaxone. How's that for efficacy?

The only side effects I have had on Gilenya are a slight drop in heart rate on the initial dose which recovered before the end of the six hour observation period (the observation that is required for all first time patients taking the drug.) I also had a mild increase in upper respiratory infections but that tapered off to nothing after a few months and now I have not even suffered so much as a head cold for well over two years.

I think it's important, when I read slanted articles designed to make people fearful of these new oral medications, that I jump in here and try to balance out the facts.

MS is a terrible disease to have to live with and decisions regarding treatment have to be made on a very personal basis. Hopefully it can also be on an informed basis and not made out of fear instilled by irresponsible reporting.

We are all different and because of that we will all respond differently to the medications. What works for me might not work for the next person. The important thing is that there are new options available to us coming down the pipeline all the time. If whatever therapy you are on isn't working for you, try something different. Research the medications yourself, but not by reading the Wall Street Journal, or message boards fraught with misinformation. Go to the NIH or FDA or read the patient prescribing information sheets like the two I linked to above.

Discuss all of your options with your neurologist. If your doctor isn't willing to listen then find a different doctor. We all need to be proactive about our own MS. After all, we are the ones who have to live with this disease. Try to be as well informed about it as you can.

And don't bother buying a subscription to the Wall Street Journal if that's the kind of "fluff" they're getting by the editor. Just my opinion.

Monday, November 5, 2012

Weight Loss and My MS

Ever since I quit smoking in 2007 right before entering the TRANSFORMS clinical trial for Gilenya (Fingolimod), I have been (at least in my eyes) overweight. I gained probably 15 lbs. after quitting cigarettes. For the sake of full disclosure and honesty, I'll say I started out at 115 lb. and ended up at around 129-130 lb. Over the last few months of trying first one thing then another I had gotten down to 124 lb.

Now I know a lot of people who struggle with their weight will look at that and scoff, telling me I should be happy when I weighed 130 and that it's still "thin" compared to their own weight. While this may be true, one's own body image is a matter of perspective with one's own perception often distorted. I have always been thin all my life, so having any "muffin top" or extra padding in places not formerly occupied by fat is unnerving -- and uncomfortable -- to me.

I have noticed that just the addition of 15 lbs. has made a real difference in how my body responds to the residual MS symptoms I have always had since my very first, and most acute, MS attack way back in 1999. My left leg has always been weaker than my right, and my legs seem to tire faster when transporting the 3 seemingly permanent 5-pound-sacks-of-potatoes I've acquired since giving up the butts. Just getting myself up from a sitting position takes more effort.

Bending over to tie my shoes can leave me struggling and out of breath. I feel greater fatigue. And refusing to give up the "skinny" jeans, shoe-horning myself into pants meant for a younger, trimmer me, adds nothing to my comfort.

I can't afford new clothes and I'm tired of seeing myself staring back from what obviously must be a fun house mirror because NO WAY can that be my stomach, hips or thighs. So I'm doing something about it.

I am all about taking control of your health. I have spoken on that very topic many, many times. I think a person should be their own advocate, make changes for the better wherever they can, and enlist the help of others when they need to. So it's only natural that, while I'm preaching self-advocacy, I need to DO something about this body that's making me unhappy.

When I was a small child my mother took me to the doctor and asked "how can I fatten her up?" I was painfully thin, twig-like and appearing so fragile a good wind might snap me in two. The doctor, a man from eastern Europe, told my mother quite matter-of-factly, "Fat is not healthy." And that was that.

I remained thin into my adult life when I only broke into the triple digits after becoming pregnant at 98 lbs. with my first son. I ballooned up to 160 lb. at the peak of my pregnancy and then by all rights I should have whizzed around the room like a unknotted balloon the way I reverted to my near starting weight, stopping at 105 lbs. after giving birth.

Even though I had quit before during both of my pregnancies, I had resumed smoking once I was done breastfeeding as if only another's health were worth quitting for and mine was either immune to the documented effects of smoking or not worthy of protecting.

But everything changed when I read the Informed Consent. This is the big, thick, War & Peace size document that outlines all the possible things that can go wrong in a particular clinical trial, informing you of every side effect or adverse event that *might* pertain to the study medication as revealed during earlier testing. No matter whether it was at a higher dose, or given to a different group of patients with other health issues or not, they have to fully disclose anything that remotely resembles a possible side effect or adverse event.

That is to what the "informed" part of the Informed Consent refers. You only sign on the dotted line and agree to become a test subject if you have read and understand all the things they tell you about what they know thus far about the medication.

When I read that there was a possibility of a mild "asthma" like condition that occurred at much higher doses with not MS patients but rather kidney transplant patients in an unrelated study, I still worried that twenty years of smoking might place me at greater risk. I'm a hypochondriac after all. Worrying is my job.

So I put down the cigarettes on the 4th of July, 2007 and never picked them back up again. Cold Turkey. Just like that. Knowing that every year, on my anniversary, the whole country would celebrate my milestone with fireworks, I found the willpower (buried in sheer fear, it turns out) to give them up.

That's the beauty of smoking cessation: to stay quit, you just simply never put another cigarette to your lips.

I have discovered, much to my horror, that losing weight is MUCH harder. The same philosophy does not apply. I have to make conscious food decisions every waking minute of my day now that I am facing these potato sacks and trying to rid myself of them. How does one find the courage on a daily basis to do that?

I read the South Beach Diet book the same way I read science fiction: I got to the end and thought "Well, THAT ain't gonna happen."

I tried Slim Fast for a week but decided that wasn't a long term solution either. I needed to learn better eating habits and replace the old ones. Meal replacement shakes weren't the answer.

Then I decided to sign up for Weight Watchers. I'm only on week two and I don't get the whole Points Plus way of assessing foods, but whatever it means, I'm starting to lose weight finally. Plus, without even trying, I'm being tricked into eating healthier. Fruits and veggies, being "free" as they are worth 0 points, are now a major part of my daily intake.

I can't quite put my finger on it, exactly, but I'm sensing that the point system satiates that part of my brain usually occupied by shopping. Getting a free snack of raw baby carrots almost leaves me happy in the same way a BOGO sale does. I got something for free. Yay me!

And so I can see this working. I have a daily budget of points which I can dole out to myself however I like, plus extra points I can dip into during the week if necessary. I have only used up my daily points one time so far, and that day ended with me feeling bloated and uncomfortable anyhow, so it's not likely to happen again.

The only thing is, I signed up for the whole she-bang -- meetings and online tools. So far I have only used the tools (there's an app for that) and have not attended a meeting. I fear going to a meeting and being "judged" by those who think I have no business being there. I know that lots of people need to lose more than I do, and these meetings are their place to commiserate in safety among others who also need to lose an obvious amount.

I am scared they will give me looks that say "how dare you call yourself overweight!" or "How dare you insert yourself into our sanctuary, you obvious outsider!"

Just as fear keeps some overweight folks from doing things where they feel their appearance might matter, I'm feeling that same thing myself. So I won't attend a live meeting because I'm too self conscious.

After a week I have lost 2.5 lbs. and just that half-a-sack-of-potatoes feels so good to set down! I definitely feel a difference in the impact the weight has on my MS symptoms. My legs feel less burdened and tire less easily. I'm not napping all the afternoon away. Maybe it's got something to do with snacking on those fruits and veggies that keeps my sugar level steady, but I feel evenly energetic all day.

No marathon in my future, don't get me wrong. I feel as energetic as your average 50something woman, and that's fine with me.

I will continue to share what I think of Weight Watchers and how I feel my MS is impacted during this journey, but I really think weight loss, however minimal, can have a major impact on how your MS treats you, if you are starting out over weight. You don't realize how bad you feel until you start feeling better. Let's face it, if you have MS the last thing you want to do is lug around unnecessary extra bags of potatoes.

And that's just food for thought. Mmmmm foooooood....

Friday, October 12, 2012

An Interview with Aaron Fleishman from BBK Worldwide

When I attended the Disruptive Innovations to Advance Clinical Trials conference in Boston, MA last month I had the pleasure of sitting beside Aaron Fleishman from BBK Worldwide for a portion of the event.

He interviewed me for their blog and the post can be seen here:
Patient Recruitment From The Patient's Perspective

I asked him if I could interview him for my blog as well, and Aaron was kind enough to respond.

Here is our interview:

Jeri: What was your goal in attending the dpharm 2nd annual Disruptive Innovations to Advance clinical Trials conference in Boston?

A.F.: This was my first time attending this conference, so I was excited to learn about the new ideas people had for improving recruitment and relationships with patients. I was also interested to learn about new programs and technology people are using to improve the industry.

Jeri: Who was your favorite presenter (besides me, of course) and why?

A.F.: I really enjoyed the presentation from Robin Price from WhatIf Innovations. Not only was he engaging with the audience, but the way he spoke about generating ideas with the people you work with -- and as he put it, “Finding the essence of the challenge”-- was insightful and actually motivated me to work differently with my team.

Jeri: Who do you think was most "disruptive" or "innovative"?

A.F.: I don’t know if I could pinpoint one person who was the most “innovative” or “disruptive,” but one of the aspects that I liked was the artist who used pictures to represent what was being said by the presenters. I thought this was a very clever way of taking in what was being said.

(Aaron was referring to Jonny Goldstein and his live-drawn "envisualizations" of the event. – Jeri)

Jeri: What are your thoughts about the hope for the future of innovations in clinical trials?

A.F.: I hope that the industry as a whole continues to embrace change and push the envelope for creative ideas so that more people become involved in clinical research. When I’m asked questions on this subject, I always refer to a blog article written by BBK Worldwide’s head of marketing intelligence Matt Kibby:, In this blog article, Matt discusses how it takes time for the industry to embrace change. He’s confident that the industry will continue to embrace change, though it will take time. I find comfort in that, in knowing that all we have to do as patient advocates and recruiters for clinical studies is be patiently persistent and eventually our message will come across to the clinical trial sponsors we work with. I think conferences like Disruptive Innovations are great because they force the industry to think creatively.

Jeri: How can you or your company play a part in effecting changes in big pharma's traditional approach to conducting clinical trials that would be "disruptive"?

A.F.: I think one of the best parts about working at BBK is that we are not afraid to be innovative, and the sponsors we work with can see that in the passion we have for the industry and the products we build. As long as we can stay on the path of prioritizing the patient first, there is no telling how much we can effect change in the healthcare industry.

Jeri: What do you think needs to happen first in order for changes in the way clinical trials are conducted to start taking place?

A.F.: I think it starts with education. I can’t tell you how many times I've spoken with people who are interested in clinical research, but they say they don’t want to be considered a “lab rat.” Though I understand why some people may feel that way, it’s just not true. Sure there are millions of dollars made off of these clinical studies and that can be a bit daunting, however it doesn't change the fact that we want the best for all patients. I think if you polled the industry, everyone would rather find a cure for a particular disease versus the monetary success that can come from the pharma industry. I think it’s important for people to know that in order to improve the standard of care, and in order to improve the treatments available for conditions, it starts with clinical research. Being a part of a study means you are contributing to the overall understanding of a condition, and that can be a cool thing to be a part of. Along with that, I think the industry as a whole needs to do a better job of explaining what’s involved in being part of a clinical trial.

Jeri: If you had the chance to have one single idea considered by Big Pharma, what would it be?

A.F.: I don’t know if there is a single idea per say, but I want the pharma industry to continue to build strong relationships with patients. I think the work you are doing is tremendous, and I hope there are more opportunities for people like you to have the same impact.

Jeri: How long have you worked for BBK Worldwide and how would you describe your job?

A.F.: I’ve worked at BBK Worldwide for almost a year now. My team heads up social innovation and patient advocacy.

Jeri: Will we see BBK Worldwide again next year at the 3rd annual Disruptive Innovations to Advance clinical Trials 2013?

A.F.:  Absolutely! I found this conference to be incredibly insightful, and I’m looking forward to the next one.

Jeri: One last question I'm dying to know the answer to: How do you think I, as a clinical trial patient, can most effectively advocate and become involved to help inspire change in clinical research? I'm all about the pointers.

Share. Share. Share. I think you have valuable insight into the pharma industry and clinical research. BBK and other industry companies can talk all we want about clinical research, but we can never get to the personal level with people the way you can. I don’t have MS; I can’t relate to people on a deep, personal level like you can. I can read all there is to know about MS and even become an “expert” in understanding MS, but I can’t relate to the experience of living with it and all the emotional challenges that come with its management. The more people that are out there sharing their stories about being in a clinical trial, the better. I think others will find comfort in knowing that people like you are out there, working with the pharma industry. I think you and others like you are in the unique position to bring pharma and patients together to start building strong positive relationships, so that we can all work together to further our understanding of all conditions.

That concludes the interview. Thanks, Aaron, for taking the time to answer my questions! If I play my cards right perhaps we'll cross paths next year at the 3rd Annual Disruptive Innovations to Advance Clinical Trials.

Thursday, September 20, 2012

My Impressions of the Disruptive Innovations Conference in Boston - Part 3: The Interview

If you are just tuning in, you can read parts 1 and 2 of My Impressions of the Disruptive Innovations Conference here:

Part 1:

Part 2:

The evening of Day 1 of the event found me networking like crazy. I wasn't even trying but so many folks seemed to be genuinely interested in a patient's perspective on clinical trials that I got caught up in one conversation after another.  I learned a lot and was so very fascinated by every single person I met. It filled me with hope to see so many brilliant people working so hard in concert to try to effect change in an industry anchored securely in its mid-20th century fundamentals.

After the reception was over and a few of us were politely shooed out to the lobby so the ballroom could be closed, I found myself standing with Abbe Steel, VP, Patient & Physician Services for and Valerie McClean, Sr. Mgr., Patient & Physician Services for . We decided to go grab dinner and asked the concierge which direction we should walk to find a nice restaurant. We headed down the street which, at 9pm was bustling with activity. We talked about clinical trials, Big Pharma, and shoes. You know, girl stuff.

After deciding against Sushi and not finding many other choices we began heading back the way we came. We ended up eating at the restaurant inside the Fairmont. We spoke about a lot of fascinating stuff and before long I was lying awake in bed, staring at the ceiling, wondering how I would ever sleep since tomorrow I would be speaking to all those incredibly smart and talented people.

Next morning came and found me again sitting at the table in the back, listening to speakers share their ideas on topics I know little about. I had a moment of panic, wondering what in the world I was doing in this place and surely Craig Lipset, of Pfizer and event coordinator Valerie Bowling of would realize the error of their ways in asking me to participate.

Valerie had previously emailed a list of questions that Craig was going to be asking me so I'd have a chance to prepare. Initially, upon receiving the email, I printed it out and got a pad of paper and pencil, determined to write out profound, thoughtful answers sure to impress the audience.

Then I decided not to get so uptight about it. They were asking me about ME after all... and MY BLOG. So who is the expert? Nobody knows me like me.

That's when I let go and deliberately avoided reading the questions again. I was going to make sure whatever I said was fresh, unrehearsed, and from the heart. I was given this audience of the very researchers all clinical trial patients secretly wish they had an "in" with. To stand before them and say what I thought they needed to hear.

The idea was to get up on stage and be just as surprised as the audience by whatever came out of my mouth. I didn't disappoint myself. In fact, twenty-five minutes flew by and I wasn't anywhere near done talking but due to time constraints and others needing their chance, I reluctantly gave up the mic.

But while I was onstage, seated side by side with Craig Lipset, I have to say that I felt SO comfortable and maybe only a smidgen nervous -- at first. And  didn't even need the Xanax I was wishing I had. Craig is a wonderful person who is down to earth, compassionate, friendly, warm and funny. There goes my preconceived notion of what Big Pharma execs are like. And I got the chance to tell them so.

I told them that like many other people in the general population, I always thought of Big Pharma as a money-driven, faceless, evil entity that had only their bottom line at heart. But after meeting them I was able to see that pharmaceutical companies, from the execs to the researchers themselves all seem to be surprisingly passionate about their life work, dedicating themselves to helping others achieve better quality of life. I told them that I wanted to thank them personally for what they do every day because it gave me a better life.

I also shared with them pointers about clinical trial patients and how we really ARE real people and not just numbers. We have lives to lead and if they want to recruit and retain patients they need to try not to have too much of an impact on our daily lives. Pointers such as:

1. Combine appointments so we don't have to make a bunch of trips to the trial center.
2. Provide day care during visits.
3. Reimburse for gas/meals.
4. Reimburse lost wages for those who have to take time off from work.

I said travel to the study site was an issue for me since I feared driving on I-95. I was asked if I would have felt having a nurse come to my home was acceptable or too invasive. I personally would have welcomed it -- with at least a week's notice to clean the place up first.

We talked about how I got into blogging and how clinical trial patients are finding each other and sharing notes. I told them not to fear Social Media and the Clinical Trial Patient because we are not out to ruin all your hard work by comparing notes and inadvertently unblinding ourselves. WE of all people are the ones who want to see your research be successful and have the drug we are on win approval. We have the most at stake! So my suggestion is to provide trial-specific forums with first hand factual information patients are looking for in regard to their study. But also a place to commiserate as nobody can understand a clinical trial patient as well as a fellow lab rat.

After my interview I was greeted with resounding applause (I LOVE that sound!) and I got lots of compliments as I returned to my seat. That's when I remembered the microphone and went to the sound booth to have it removed before I accidentally burped or something and ruined the illusion of sophistication I had worked so hard to pull off.

While getting de-mic'd (it's a word now) I noticed someone coming at me from the left. It was Donald Stanski, MD Global Head of Modeling & Simulation at Novartis Pharmaceuticals. He came right up and gave me the biggest bear hug! He told me how proud he was of me and that I did a great job. I can't tell you how wonderful that made me feel.

I did some more networking and was greeted with rave reviews of my talk. Many of these researchers have never before met a real live patient. I likened it to looking inside the cage and being surprised that the lab rat can speak!

I was interviewed by Aaron Fleishman of and his blog post should be up tomorrow I think. I will share a link when I get it. I am going to do a reciprocal interview on his take of the conference. I just need to do some grocery shopping, a little laundry and pick the kids up from school, but it's on the agenda.

I had to catch a plane not long after that. Sort of like my carriage turning back into a pumpkin. I left with a fist full of business cards and a couple of pens, hoping to connect with as many people as I can and keep this dream of the ePatient Making an Impact on Clinical Trials and Social Media alive. I want to stay proactive and be an advocate for all clinical trial patients. I'm just not sure how to do that. One thing's for certain, I have found that when a new door opens, I'd be a fool not to go through it and see what life offers next. So far it's been an amazing journey.

Thanks so much to Craig Lipset, Pfizer, for reaching out to me initially, and to Valerie Bowling of for inviting me to participate. It was an honor... and a dream come true.

Wednesday, September 19, 2012

My Impressions of the Disruptive Innovations Conference in Boston - Part 2: The Event

Read Part 1 of my trip to Boston for the Disruptive Innovations conference.

Day one of the event kicked off with a breakfast from 7:45 - 8:30am but I was not present. I was next door to the hotel at FedEx Office store getting some business cards printed up. Now one might think, knowing I have been in printing and graphic arts all my life, that I would have come to town more prepared with a fistful of nicely designed, embossed cards printed on fine quality linen card stock. No. I came with one print out of a hastily designed card on 20# copy paper asking the good folks at the FedEx place to work a miracle and do so in under an hour.

There he is, oh so carefully whacking my cards
apart all crooked and off center.
They accepted my challenge and I got what I deserved. When I owned my own print shop I had a sign on the wall that stated "There are three ways to have your printing done: fast, cheap and good. Pick two. You can have it fast and cheap, but it won't be good. You can have it cheap and good but it won't be fast, or you can have it fast and good but it won't be cheap." I fell victim to my own rule only they had kicked it up a notch and I only got one of the choices: Fast. It was not cheap and they did a terrible job, but hey, I got something to hand out and didn't get a cramp in my hand scribbling it myself.

By the time I had found the ballroom where the crumbs of breakfast remained, I made my way to the tables set up before the stage and selected a seat in the back so I could take in all that was going on around me. I sat with Aaron Fleishman from and had a great time interacting with him.
Sitting in the back.

I started off by taking notes on the talks from several of the speakers. Then after a while I got that same fidgety feeling I used to get when taking notes in school and decided I didn't need notes on every speaker. If I spent the whole time looking down at my paper I might miss a visual aid. I decided to relax and soak it all in with no regard or pressure about recording it for posterity.

Please note: Craig Lipset is much better looking than that IRL.
So I can give you the gist of things, or I can make it even easier by giving you a link to all the great large scale visual notes taken by Jonny Goldstein . This guy was amazing. He stood with his easel at the left of the stage and denoted the essence of each presentation in graphic detail. At each networking break, his drawings would be on display for up close inspection. Here's one I captured with my cell phone camera.

 The presentations were all motivating, uplifting and hopeful for a future where the stodgy old traditions of science can someday catch up with the breakneck speed of technology and merge in a symbiotic relationship that means better medicine – faster – for all.

There were presentations about thinking outside the box (which has become an "inside the box" expression considering its over use). Examples like the ones Jon Platt gave dramatically illustrated the issues that need to be addressed. He spoke of the Five Monkeys, The Banana and the Ladder Experiment. In the experiment five monkeys were locked in a cage, a banana was hung from the ceiling, and a ladder was placed beneath it. When a monkey would climb the ladder to go for the banana, he would be sprayed with ice cold water. The other monkeys would also be sprayed.

Seeing any of the cell mates try to go for the banana, knowing they'd be sprayed, the rest of the bunch would attack the ladder climber. After a while, they all quit climbing the ladder. Then an original monkey would be replaced with a new, unsuspecting monkey. When that monkey attempted to go for the banana, the other monkeys would jump on him and beat him up. Eventually, all original monkeys were replaced and the banana wasn't even there any more, yet the cultural learning of how any monkey who goes near the ladder needs to be beaten by the rest of the mob remained. They obviously had no experience with the water spray or even the banana reward, yet they had done what they had learned "because that's just the way we do things around here."

Jon Platt, Director of ?WhatIf! Innovation Partners says that mentality no longer has a place in the science of clinical trials and needs to be replaced with more logical approaches that are intelligent, thought out responses to issues that face the world of research today.

He also demonstrated the power of positive thinking in the process of problem solving. We did some audience participation and learned how to steer conversations in a direction the facilitates positive outcomes.

One of the slides he used as part of his presentation demonstrated how an airline proposed to add more seats to the plane. As you can see, the seats are on the wing. He asked for us to shout out the good things about that and we heard "More leg room!" "Better view!" "Fresh air!" among the responses. His talk was very inspiring and uplifting.

Between each of the sessions, we had networking breaks and I had the most stimulating conversations with the smartest people I've ever met – and they cared about what I had to say. Someone pinch me and wake me up.

Stay tuned for Part 3. I'll share the conversation that I had on stage with Craig Lipset next.

Tuesday, September 18, 2012

My Impressions of the Disruptive Innovations Conference in Boston - Part 1: Arrival and Speakers' Dinner

I have been back from Boston since Friday night and I am just now rested enough from this past week to gather my thoughts to share. All that travel can take a lot out of a person and for those of you who live out of a suitcase, I have a new found respect for your ability to persevere.

 If you're just tuning in, here's the Reader's Digest Condensed version... I have MS, I decided to enter a clinical trial for Gilenya (then FTY720 / Fingolimod), blogged it from start to finish, caught the eye of Craig Lipset from Pfizer who reached out to have a conversation about clinical trials and social media, and subsequently got invited to speak at the 2nd Annual Disruptive Innovations conference held at the Fairmont Copley Plaza Hotel in Boston, MA.

I literally went from lying on my back in bed five years ago, contemplating suicide because my quality of life was so poor to addressing researchers and representing the empowered epatient on stage with heavy hitters beside me from the big pharmaceutical companies.

I have a purpose in life, finally, it seems. Some people live and die never feeling this passionate about anything; never feeling a "calling". I had to live 50 years before realizing I'd met my destiny. If it took getting sick and eventually taking my health decisions into my own hands to bring about this change in my life's direction, then I'm okay with that. I finally feel like I have something to share with the world. I feel like an individual CAN have a voice and if I choose my words carefully, maybe I can leave a lasting impression. 

Sounds grandiose? Well, I'm figuring out that you have to have dreams in the first place if they are ever going to come true. So why not dream big? I want to impact the world and leave an impression the size of the grand canyon. So some day there will be a velvet rope around the dent I make with a bronze plaque stating "Jeri Burtchell, pioneer and epatient, impacted the world of clinical research and gave lab rats everywhere a voice."

 But I need to get back to recapping the conference...

 I stayed at the Fairmont Copley Plaza Hotel (where the conference was held) and I swear to God I walked into that place feeling just like Cinderella going to the ball. Everything was ornately carved, gilded in gold, dripping of money. Chandeliers lit the lobby and a 100 year old mosaic tile floor strewn roses beneath my feet. I struggled to make sure I kept both glass slippers on my feet. I pinched myself regularly.

Source: via Jeri on Pinterest

Wednesday, September 12, the Speakers' Dinner took place at Davio's restaurant about five blocks from the Hotel. Until now, I had been on my own, not yet meeting any of the players in this fairy tale. I arrived at Davio's and found Ciara from and latched onto her as if she were a flotation device. I got a glass of white wine and proceeded to attempt to "mingle" among the sea of expensive looking suits. At first I was terrified. I was so out of my element. These are all important people. I'm just a stay-at-home mom who has a chronic illness and happened to blog about it. How could I possibly hold my own here?

But gradually, I began to relax. I would say the wine had something to do with it, but that's not giving these people the credit they deserve – nor myself! It turns out that, suits aside, they were all interesting, warm, friendly, funny people who were there because they all want to effect change and make an impact. I was welcomed with open arms, tons of respect, and more than a little curiosity. I felt like a princess and I kept checking that I still had both glass slippers. (To everyone else they looked like black leather tennis shoes since the combination of MS and walking five blocks to dinner negates the wearing of high heels).

Seating was pre-arranged so it was no accident that I had Craig Lipset on my right and Bonnie from on my left. Across from me were three more people who I can picture clearly and recall lots of the conversation about who they are and what they do, but the only business card I got was from Jules Mitchel, President of Target Health, Inc. He mentioned the possibility of involvement on a patient advisory panel.

The dinner was fantastic, the conversation topped it, and the grand finale of the evening was when Craig introduced me to John Orloff, Senior Vice President, Global Development & Chief Medical Officer of Novartis Pharma AG, and Donald Stanski, MD, Global Head of Modeling & Simulation at Novartis. As soon as I saw John Orloff, I recognized him from the conference brochure as he was one of the three men who led the Disruptive Innovations conference along with Craig Lipset from Pfizer, and Andreas Koester of Johnson & Johnson. I jumped up, feeling so overwhelmed to meet someone in so high a position at the drug company that gave me my life back, that I not only shook his hand, but insisted on hugging him. I think he was a little surprised by this greeting, but he took it in stride and allowed me to gush as if I'd just met George Clooney or something.

Donald Stanski claimed that he just carries John Orloff's bags around, but I have a feeling his job is much more important that that, judging by the business card he gave me.

I was privileged to have them both accompany me back to the hotel from Davio's and along the way we shared stories. I told them why I was attending and how I had blogged my clinical trial that they had sponsored and they were excited to meet a trial patient and hear how their work had so positively impacted my life.

Ever since my trial ended and so much time has now past since my last MS relapse (April 7, 2007 – 5 years, 5 months and 11 days, but who's counting?) I have wanted to express my overwhelming gratitude to anyone even remotely connected to Novartis and the clinical trials. I am their biggest cheerleader.

They both seemed very inspired by my story and motivated to help me spread my positive message to as many people at Novartis as possible. Who knows? There may be more travel plans in my future.

That night, I laid awake for hours, not wanting to miss a single moment of this amazing experience – afraid I'd wake up the next day having dreamed it all – not having any idea that it would just keep getting better and better.

Next Up: Day 1 of the conference.

Friday, September 14, 2012

cant wait to tell you all about disruptive innovations...

I'm living the dream...or rather I was. I just left the Disruptive Innovations conference in Boston, MA where Craig Lipset of Pfizer interviewed me on stage. I had a great time and surprisingly held my own with minimal embarrassment. I will share more when I'm not stuck in Philly blogging from my Kindle Fire With two fingers while people await their turn at the table in the pizza joint on B terminal. I just wanted to beat Craig at getting something blogged. When I get home I will share so many details you will be screaming at the screen for me to get to the point. Until then, try to take a bathroom break and get the drinks and popcorn ready. There will even be pictures.

Thursday, September 13, 2012

Tweeting the Disruptive Innovations conference

I was able to score free internet access from one of the nice employees here, so I'm going to try and live tweet highlights from my time here in Boston. If you want to follow along, I'll be using these hash tags: #dPharma and #GCT.

Monday, August 27, 2012

It's not the size of your comfort zone that matters; it's what you do with it.

I've been in a reflective mood of late, considering my recent Gilenya Anniversary and all. If I could sum up, in a single thought, what has been the most dramatic change over the course of the last five years since I started this journey, I would be hard pressed to find something that beats the expansion of my Comfort Zone.

I went from not wanting to leave my house and being terrified to drive on a highway to flying all over the country and doing public speaking.Public speaking!! You know, the thing that most often tops Death on the list of responses to the survey on What People Fear Most.

I had an epiphany the other day. It occurred to me that when one has a chronic illness, the size of their comfort zone is directly proportional to their current state of health, with all of the ugly symptoms taken into consideration. The comfort zone grows and shrinks according not only to our mental state but also our physical one.

When I was relapsing and feeling bad, my comfort zone shrunk into such a tight circle, it almost closed up and went "POOF!" My bed was my only safe place that afforded any comfort. Since I was relapsing with such regularity -- every three months with a three month recovery period -- I was thankful that at least my comfort zone was queen size with a pillow top.

After I got into the TRANSFORMS clinical trial for FTY720 (Fingolimod aka Gilenya), things began to change for me. It was so gradual that only looking back over the last five years from my current perspective can I sit here and be astounded by the transformation. (Turns out TRANSFORMS was a good name for the study after all, eh?).

I went from lying on my back in bed, my only comfortable place, wishing I was dead, to being comfortable with the idea of hopping on a plane to go somewhere I've never been to speak to huge groups of people I have never met.

There is no magic involved. There's no snapping one's fingers to make it happen. Turned out it was baby steps. Or just regular steps. The emphasis is on steps. You have to keep moving in order to affect change. Think of your comfort zone as a sort of elastic bubble. If you always stay within it and never test the elasticity, you will never know how far that bubble can stretch. You will always be stuck in your small circle of comfort, never realizing just how resilient your bubble might be.

I began pushing my bubble when I got into the trial. The very act of signing that informed consent paperwork was my very first step. I was determined to make an effort to change the direction of my life. In doing so I was rewarded. First with the self confidence to know I could drive alone, into a big city, and find my way without dying in traffic or getting lost on the wrong side of town. Sounds silly? These were bona fide fears in my mind. Legitimate reasons to never leave my bed.

As the symptoms of my last relapse gradually subsided, I found myself pushing that bubble more and more. Each time finding that it expanded with little resistance, increasing the size of my comfort zone. Although I have not had a relapse since April 2007,  I have had other illnesses such as stomach flu or head colds since then and my comfort zone temporarily shrank, but never back down to the size of just my bed. I knew that it was a temporary setback and as soon as I felt better, my bubble was back to size.

Some people are born risk takers and bubble pushers. I am not. It was something I had to consciously do. When a friend I met through this very blog wrote to tell me she was joining the Gilenya Guide Network and would be traveling  around speaking, she tried to encourage me to join too. I remember thinking about flying (which I had not done in 30 years and certainly not since 9/11) and public speaking (which I had only done on two occasions -- once at city hall defending my application for rezoning, and another time to speak to the school board -- both times ending up with such a bad case of the nerves that my voice croaked and squeaked and I felt like I would throw up all over the podium) and I just laughed at her. But Anne, of Just Call Me Grace wouldn't let up. I owe her a lot.

Because of her getting into my bubble and giving it a good shove, I now can fall asleep during take off of a 747. I can walk up to strangers and confidently strike up a conversation. And I own a pair of Converse Chucks, but that's another story.

Some people have bigger Comfort Zone bubbles. Some have tiny ones. Those who are ill sometimes have none at all. If you see someone struggling with their bubble, step in and help them gently give it a push. You never know what might blossom, and everyone can use a bigger Comfort Zone. When you feel like you know your own space inside and out, and things get a little too comfortable, give it a push. Take a few steps outside and test the waters. Who knows what fear you have today that may be something you look forward to tomorrow?

I have come from lying on that bed fearing tomorrow to looking forward to 3 speaking engagements in the upcoming weeks. Speaking to the entire sales force for Novartis and only days later speaking to  researchers from all the pharmaceutical companies at the Disruptive Innovations to Advance Clinical Trials for Pharma, Biologics and Devices conference in Boston. It seems like a dream, but it was just a matter of putting one foot in front of the other. In doing so, I'm really quite comfortable within my *zone* now.

How big is your bubble?

Tuesday, August 21, 2012

Good Advice

Saw this on Facebook and thought it was good advice and something I should keep in mind Thursday. I have a checkup with my neurologist and I'm certain a blood draw is in my near future.

Monday, August 20, 2012

A Most Wonderful Gilenya Anniversary

Today is a very special anniversary... FIVE YEARS ago today I entered the TRANSFORMS clinical trial to compare Fingolimod (Gilenya) to Interferon Beta-1a (Avonex). I vividly remember being terrified of both the  needle (roughly the size of a turkey baster) with which I would have to get personal on a weekly basis and the innocuous little pink pill whose side effects were heretofore unknown to me.

Here is the post that documents the start of my adventure:

Looking back on that day, I will always remember it as one of those life changing, pivotal events. One of those moments that separates the past from the future and leaves in its wake dramatic change. It wasn't long before that day that I had finally started feeling *normal* again after what has since become known as my Last Documented Relapse thus far.

In April of 2007 I had one of my many and frequent (at the time) earth shattering relapses which had left me numb, weak, and suffering uncontrollable panic attacks. The relapse that found me flat on my back in bed one day, staring at the ceiling wondering "if this is all life has in store for me, really then, what is the reason to go on?" The relapse that forced me to face myself and my future and either choose to give up or take charge. It was the relapse that made me choose to enter the clinical trial.

If you were to judge the luck and good fortune I've had in my life by the size of my bank account, it wouldn't be hard to see that my life has been a Series of Unfortunate Events. But having a chronic, incurable, often times devastating disease like MS has taught me that true luck and good fortune cannot be defined by a number prefaced by a dollar sign. Indeed, there could be no amount of money presented to me now for which I would relinquish the past five years of my life and return to that bed, that ceiling, that relapse, that dilemma. What I have been given is worth more than any string of zeros could provide.

Quality of Life. Three simple words that, when strung together in that order, mean more than all the gold on earth.

I know Gilenya has not been the magic bullet for some who have had adverse events or shown no improvement, but for many, including myself, it's been nothing short of a miracle. Everyone's experience is different, of course, and I don't entertain any delusions that I am "cured". I know I will relapse again, eventually. And when I do I will fight my way through it and come out on the other side with my spirit intact -no matter the physical setbacks.

I am just so happy that I made that decision. That for once in my life I decided to be proactive and take charge of the course of my life. Even if it meant thrusting myself squarely into uncharted territory well outside of my comfort zone and serving my very being up to science on a Petri dish.

Over these last five years I have been thanked by many on the other side of the experiments (the pharma reps and doctors alike) for unselfishly agreeing to take part in this historic trial that forever closed the door on "needles only" choices for MS treatment.

I don't think I did anything particularly courageous though. Unless you consider reaching for a life ring and hanging on tight while drowning takes an act of courage.

Rather, I will be forever indebted to Novartis, UF & Shands, all the wonderful doctors and and clinicians who have devoted their resources and (in many instances) their very lives to finding a way to give me back my QoL.

Being relapse free for five years and counting: PRICELESS!

Sunday, July 22, 2012

MS and this Sizzling Heat

I had such grand plans this spring. I was looking forward to summer and days at the beach or hanging out at my friend's house and dipping my feet in her pond. Instead I hibernate.

I live indoors, only looking out at the brilliant blue sky with the burning golden orb from the safety of my air conditioned cave.

My skin is pale and I haven't even driven by the beach, let alone set foot on it. And I'm only 30 minutes from the gorgeous shores of St. Augustine, Florida.

And don't even get me started about the 3a.m. hot flashes I've been having. Seriously?? I'm doing the best I can to escape the heat but apparently I am capable of a nuclear meltdown from within. No need for the great outdoors.

All this heat is uncomfortable for anyone, but for a person with MS, let me tell you, it hits us like the house falling on the wicked witch. Look around you next time you are outside. Do you see anyone melting into a puddle? Anyone trying to walk with legs that were cooked way past al dente? They may just have MS.

You don't normally go around thinking of yourself as having an electric cord for a spine, but really, that's what it is. You're one of those tall, skinny floor lamps and your head is the shade. From where your brain lights up with all those bright ideas you have, all the way down the "spine" of this lamp, runs the electrical wiring which is your spinal cord.

 I used to have a lamp like this and the cord was frayed in a few spots. If you bumped the lamp the light might flicker. It was patched here and there with electrical tape -- much the same way my body has tried to repair itself with the plaques or scars that form on the frayed spots of my spinal cord from the damage of multiple sclerosis.

And just like anything electrical, the lamp operates best when it's in an air conditioned room. Not in sweltering heat.

Raise the body temperature of a person with MS and watch what happens. Whether from an external source or from having a fever, whatever the cause for a rise in body temperature doesn't matter. The result is the same. Known as Uhthoff's Phenomenon or Uhthoff's Syndrome, it is described as the worsening of MS symptoms when the body gets overheated from hot weather, exercise, fever, or saunas and hot tubs.

So this is why, for many of us, barbecues, beach parties, amusement parks, camping trips, and basically anything requiring us to be outdoors in the summer heat feels like the kiss of death. I spent a couple hours outside recently and then had to get in bed and stay there for nearly 48 hours. Granted I watched 2 full seasons of Sons of Anarchy while I was laying there, but I felt wiped out and useless. Betrayed by my body.

For me Uhthoff's means serious fatigue and muscle weakness. I can remember once when I got so hot outdoors at a pool party in the afternoon heat of a Georgia relative's house that I could not get up and walk from the chair I was in to the refuge of the AC of my nearby car let alone in the house. When I had first arrived I had walked as if in total good health, unaided by cane or walker or other assistive device to sit there in the first place.

That was my first experience with a major case of Uhthoff's. I was carried indoors and laid on the couch. As the AC cooled me off, my ability to walk returned. It was quite dramatic and I had absolutely no idea what was happening at the time. Not only that, but I think a lot of the onlookers (who were even more ignorant that I of the peculiarities of MS) suspected I had been faking in order to crash on the couch in the AC for a while.

Ever since my diagnosis in 1999 I have experience Uhthoff's Syndrome in a more mild form whenever I take a shower. I remember the day I got my definite diagnosis and the doctor said "no more hot showers." and I said "for how long?" and he said "forever".

Yeah, right. Like I'm going to sit there and take that piece of advice to heart. Bad enough to be told I have an incurable, degenerative disease you can only (at that time) treat by stabbing yourself with needles. NOBODY was going to come between me and my water heater. I worked it all out though. I'd learned to only take showers at a time of day when I have like an hour to kill laying on my back afterward. I'd only stay in long enough to get my legs almost to the "wiggly" stage, then stop and go lay down until I cooled off and my body returned to it's normal jello like firmness.

These summer days, this time around, are brutal on everyone, but especially those of us with MS. I live in Florida year round so you would think I'd have it rougher than say someone in the northeast. The fact of the matter is, living in Florida I know better than to go outside in the heat of the day, and we have central AC that keeps the house like an igloo. I have learned to adapt.

The folks farther north aren't equipped for blistering, unrelenting heat. They have WINDOW UNITS for AC if they are lucky. How barbaric. Nobody can live like that. So I have great sympathy for those who live where this heat of summer is uncommonly brutal.

There are ways we MSers can stay cool. One of them is to use a cooling device. The MSAA (Multiple Sclerosis Association of America) offers a "Cooling Program" designed to provide assistance to those who cannot otherwise afford to purchase one of these devices. You will need to print out an application and mail it in. Assistance is offered on a first come, first served basis.

Polar Products has a website full of options for keeping cool as well. Their site seems easy to navigate plus they have a page titled "How Do I Choose?" that helps you narrow down the products that would work best to meet your needs.

But I am most excited to share a product I just recently discovered and tested out with amazing results. It's called the Chilly Sport, made by the same folks who make the Chilly Pad and the all new Chilly Dana, and can be found on their website at .

This thing is awesome. It's a cloth that feels similar to a chamois, is sort of "waffle" textured on one side and smooth on the other. Very light weight and flexible (when wet -- don't let it dry out or it feel more like cardboard) it comes in a container to preserve the dampness when not in use. You get it wet with water. Doesn't matter if it's hot water, cold water, or something in between. Wet is the operative word here. Then you wring it out real good. It starts working it's magic immediately becoming very chilly as it's name implies. You can wrap it around your neck, roll it up and press it to your forehead, wrap it around a limb, or use it however you like. It works. And if it seems to be warming up, just grab it by both ends, spread taut, and fan it about in the air for a couple seconds. The magic returns. This thing will keep you cool for an hour or two. Maybe longer.

Other ways to stay cool are obvious things. Drink LOTS of water, press ice to your pulse points, take cold showers, stay indoors in the AC, and another one I can attest to from first hand experience -- CUT YOUR HAIR.

Oh my GOSH! I have not had short hair since I was about 6 years old. If it was anywhere close to being up to my shoulders, I called THAT short. Well, I finally did it. I went from long to OMG this is freaky short, and I can't tell you what an unexpected difference it made in the heat regulation of my body.
Alix, me, Amelia and Mark 2005. We all had our hair *issues*.

Alix, me, Amelia and Mark 2012. Much better all the way around!

Don't get me wrong, I've still been hot-flashing - that's not going away any time soon apparently - but for the first time I can ever remember my neck and ears are often cold. Going outside, I can feel the breeze on what has always otherwise been blanketed in a thick layer of bushy human fur.

I can't really get used to the new "look" but it's liberating to have that bubble of fur my head's been trapped in lifted off finally. Besides, being behind the new haircut, I'm not obligated to look directly at it like the rest of my family. Although I often wonder who that is when I pass a mirror.

Trading vanity and big hair for comfort and coolness was the best thing I've done to be proactive about cooling off. Besides, it's ONLY HAIR and it will grow back. (Not soon enough sadly, but eventually, hopefully).

So wherever you are out there, if you are suffering with your MS in the sweltering summer heat of 2012, remember you are not alone. Try to stay somewhere cool, cool off when you overheat, and give your body all the rest it needs once Uhthoff's gets you.

Here's hoping it doesn't. :)

Chillax and I'll be back sooner next time.

Saturday, May 12, 2012

How social media is impacting the face of clinical trials

I have been invited to speak at a conference to be held in Boston, Sept. 13-14, 2012.
The conference is about "disruptive" thinking in clinical trials. In other words, they want to shake up the traditional ways of approaching research and the patients involved, and take into consideration that, for better or worse, social media WILL play a part in all of this.

The reason for my invitation

I started this blog in 2007 to chronicle my experience in the TRANSFORMS clinical trial for the new MS drug Gilenya which is currently the only pill form of therapy FDA approved to reduce relapses in relapsing-remitting MS.

The idea for the blog was borne out of my frustration in trying to find any information about clinical trial experience from a patient's point of view. I was apprehensive about becoming a human lab rat and wanted someone to show me that it was okay and that they had been through it already.

Finding no such example, I decided to start the trial despite the lack of reassurance, and blog it from start to finish in hopes of offering those other potential trial patients something to find when they googled "clinical trial patient" in the future.

Along the way something unexpected happened. I gained readers who spread the word and shared my experience through other forms of social media. I was soon hearing from other trial participants -- many of whom were in the same clinical trial. We developed a camaraderie formed around our mutual trial experiences and sought to form a group to stay in contact.

I started a Yahoo group which was quite active for a while. It was private, by invitation only, and new members had to *prove* their membership in one of the Gilenya clinical trials to gain access to our group.

We shared our experiences, comparing notes and even questioning whether or not we ought to be doing so. But the human nature part of the equation took over and we were all driven to share and all of us felt comforted by the odd little community we had formed.

The Yahoo group was difficult for me to manage. It was not visually intuitive to me and my MS brain just couldn't get the knack of it. Instead, I opted to host a private forum on my own web space. It served the purpose until we were hacked and discovered posts of pornography littering our boards.

Finally we landed on a private group on Facebook. There we stayed until the drug attained FDA approval in September 2010.

After the trials were over, another group member decided to found the Facebook group "Gilenya (Fingolimod) Support Group" which is very active today with nearly 1,000 members. Many of the original trial members from our Yahoo group are still there, and remain active in helping new patients navigate their way through starting therapy. We are all there comparing notes, reassuring each other, and directing one another to seek medical advice rather than rely on a consensus on a Facebook group.

At the time, I had no idea that my blog, or the groups we formed afterward, was anything close to ground breaking.

Turns out that the pharmaceutical world was watching. Now I have an invitation to stand before those who shape the future of clinical trials and educate them on the e-patient and how we use social media to stay connected. 

Just as with the clinical trial, I don't want to face this alone. I want to bring with me the voices of as many clinical trial participants and I can gather.

 If you were in a clinical trial of ANY SORT, any medication for any disease, and had the chance to stand before those who are at the very top of these trials, what would you tell them? What would you ask them? What would you want them to know? It is YOUR CHANCE as an anonymous clinical trial subject, normally viewed as a set of test results, statistics, percentages, to be heard as the human being you are; to give feedback and suggestions about your experience.

I am going to be gathering as much info as I can about what clinical trial patients are concerned about most, and I am going to bring it -- on behalf of all of us -- to the attention of the top level people from all of the pharmaceutical companies who preside over clinical trials everywhere.

If you would like your voice to be heard, please take this anonymous survey I have created.

On September 14th during my portion of the conference, it will be live-tweeted on Twitter and as the date approaches I will let you know how you can join in.

I'm very honored to be given this opportunity to represent clinical trial patients everywhere and in particular the e-patient who is internet savvy and engaged in social media. Hopefully it will start a conversation with people in research that will effect change for the better for all of us.

Blog it, Tweet it, Facebook it, email it, use two tin cans and a string... I don't care how you help me spread the word, but let everyone know that this is our chance to be heard.

Monday, May 7, 2012

A recap of my ms experience - Part 3 - joining the clinical trial

If you're just joining us, you can read parts 1 and 2 here to get up to speed:

Part 1: Diagnosis
Part 2: Starting Therapy


I stayed on Copaxone for the next eight years. The whole time I continued relapsing 3-4 times a year with such terrible relapses it often took a good three months to recover, so I was basically in one stage of a relapse or another continually.

My neurologist, whom I trusted implicitly with my ms, did not seem alarmed by my relapse rate, nor did he suggest I try switching therapies. He just insisted I had an aggressive case of ms and I should stay on the Copaxone and treat acute attacks with IV steroids. I didn't know any better, so I went along with the plan.

Then one day my neuro I'd been with all along had a stroke. His practice abruptly shut down while he struggled to recover. I was without a neurologist.

Since my small town only had one other neurologist who wasn't seeing new patients, my primary care physician (PCP) became my ms lifeline. Every time I'd feel some new numbness, weakness or burning, I'd run to him. He kept insisting that the things I was coming to him with were ms related and I really needed a new neurologist. The catch was, in order for me to see a new doctor, I would have to drive out of town to do so. That terrified me. I hate trying to navigate in strange places almost as much as I fear driving on the interstate. I was defiant. 

One day he just put his foot down and, before I had left his office, he had his nurse schedule me an appointment with a neurologist out of Jacksonville, FL. A Dr. Kantor I'd never met.

The appointment was a good month away and in the meantime I got an Momentum magazine in the mail. In the back of the magazine is a section that outlines all the promising therapies coming down the pipeline. All the stuff currently in clinical trials. I read about a trial that was soon going to be recruiting patients called the TRANSFORMS trial to test efficacy and safety of a new drug called Fingolimod. What was exciting to me about this trial was the fact that it lacked a placebo. Rather it would be testing 2 different doses of Fingolimod in a head to head comparison study with FDA approved Avonex.

 It was to be a double blind study meaning neither patient or study center would know what the patient was on. In order to accomplish the blinding, it would be necessary for the study patient to take a pill once a day AND do a shot once a week. Either the pill or the shot would be the "placebo", but not both. So the patient would either take a sugar pill all week while giving themselves a shot of Avonex once a week, or they would be taking Fingolimod all week while giving themselves a shot of sterile water once a week.

Around the same time that I got that Momentum magazine, I also got a flyer in the mail from the local ms support group. I was excited to see their upcoming guest speaker was going to be my new neuro. How convenient! I could go meet him before I had my appointment and maybe get a little one on one time with him and ask him about the clinical trial.

Turns out I didn't have to ask. When he spoke at the support group meeting, Dr. Kantor was full of energy and very excited to talk about many things -- including the fact that he was lead investigator for the TRANSFORMS trial that was currently recruiting.

When I had my appointment, finally, we discussed all the things unique to being in a clinical trial and in particular the known risks associated with Fingolimod. I met with the study coordinator who gave me a thick stack of papers call the "informed consent" to take home and read through. It basically outlined what the study would be about and then went on to list any and all possible side effects or adverse reactions that were known to be associated with the medicine. Since Fingolimod had been trialed earlier in kidney transplant patients (at a much higher dosage), there were many known possible risks to consider.

It was a very intimidating and scary document considering I can't even take a Tylenol without reading the package insert and wondering how many of the possible side effects I might suffer. (Hence the "hypochondriac" in my blog's tag line.)

I ended up signing it and before I knew it I was under the microscope. Not literally, of course, because that would have to be one big microscope, but I felt like I was being thoroughly poked and prodded and constantly monitored. I had never had such acute attention paid to the minute details of my health and I felt surprisingly "safe" within the clinical trial.

This is where I have to leave off so you can catch a break and get on with your day...

I will try to finish this up and condense the trial into a single blog post only recapping the highlights. Not an easy task for someone fond of huge, paragraph-ish run-on sentences.

That's why I can't do Twitter. I can't get to the point in 140 characters or less.

Wednesday, May 2, 2012

Upcoming Topics I Have Planned

I know I have really slacked off on my blogging, but I do think about it a lot. Does that count?

Here is a list I have compiled of topics I have been kicking around and will try to cover in the near future.

  • Tips for accessibility in the home
  • When you partner is not supportive
  • Part 3 of my MS journey
  • Finding your voice to be proactive
  • Crutches for the mind - tips on dealing with brain fog
You see? My brain is staying busy but I just haven't applied myself to the keyboard. I figured by compiling the list it would make me feel more obligated to follow through. Let's test that theory and see how long it takes me to post again. Don't start counting until Friday night. I'll be out of town until then.

Great MS Video found on Facebook Gilenya Support Group

A patient very new to Gilenya posted this video she made on Facebook and I was so moved by it that I wanted to share it with the rest of the world. Please take a look and share it with others. :)

PS, I know that popcorn I told you to make at the end of my last post is way past stale, but I promise to write Part 3 of my MS Story very shortly... by this weekend for sure since I'm going out of town tomorrow (actually later today since it's 2am now) to speak to a group of MSers about Gilenya. If you're in or near Venice, FL and want to come out, I'm speaking at:

Crossroads American Grill
385 US 41
Venice, FL

Thursday, May 3 - 6pm

Monday, April 9, 2012

An anniversary beyond my wildest hopes...

This Saturday was no different than any other Saturday that I can recall these past few years. I awoke to drink my coffee outside, enjoying the coolness of the morning and the sun on my face. I listened to the birds singing, and watched the squirrels scamper around. My cat sat smiling and blinking contentedly beside me on the top step of the porch.

I spent some time with my new hobby (read: obsession) sewing, and whipped up a couple things.

Later I ran errands, ran around Super Walmart and got a few last minute things for Easter, and later took a stroll up the dirt road we live on, just to enjoy the day.

What's so amazing about all that you ask? Sounds like a normal Saturday to you, doesn't it? Well, five years ago on April 7, 2007 you couldn't have convinced me I would EVER have another Saturday like that. A Saturday where I may not even think about having MS if it weren't for remembering to take my Gilenya. A Saturday that felt *normal* in every way possible.

Five years ago this past Saturday was the day I awoke to numbness and burning in my legs. I stood up and the room was spinning. My brain was fogged. I had one panic attack after another. That was the day of the start of my last MS relapse.

For the next two months I would continue to be miserable. I remember lying on my back in my bed, home alone. My son was at school and my boyfriend was at work.

I wanted to die.

I was so sick of the unpredictability of my disease and the random way I'd have symptoms so odd even my doctors gave me strange looks. I think this was also the MS attack that had me feeling like my left hand was on backwards. When I would think of my hand, I could sense it was palm up with thumb on left. I looked down and it was knuckles up with thumb on right. Being left-handed was not an added bonus at this time while I tried to get used to my hand feeling so weird.

I drove myself to the ER twice the first week of that MS attack. Both times I was certain I was having a coronary, only to discover that while I waited to be seen by the triage nurse that all my feelings of distress subsided after 30 minutes or so.

These were the first of many panic attacks I would suffer during the MS relapse. I saw my primary care doc who prescribed Xanax for me. I carried them around like a binky. Like a favorite old teddy bear that I couldn't even part with long enough to wash. This was my life line to sanity. All I had to do was feel my scalp start to crawl and my breathing get fast and shallow while  my pulse pounded and my hands glistened with sweat, and I took a quarter of one of those pills and it brought me back to the safety of a calm place without any other obvious side effects.

Heck, it could have been a sugar pill and as long as the doc told me it would rescue me from a panic attack, I bet it would have worked.

Anyhow, I remember laying there on my bed, looking up at the ceiling and telling myself why it was a bad idea to kill myself. All the people who would be hurt. All the people who loved me. All the people who needed me...

So I didn't. But I was THAT close. I remember.

I'm sure a lot of you MSers who read this who have had this nasty disease for any length of time have probably had that same discussion with themselves. The silent reasoning about why we should continue to keep our chins up and endure.

That was my last MS attack (KNOCKING WOOD FURIOUSLY!!!) and I have finally quit holding my breath and cringing, waiting for the other shoe to drop. I'm sure I will have another attack.Don't know when, but I'm not naive enough to think I'm cured or anything like that. When it comes, and I'm sure it will, I will accept it, deal with it, and move on. Hopefully it won't be a doozy like the ones I used to have, and hopefully I can weather the storm with grace and patience.

I am just SO GLAD that I chose not to give in that day.

I made that choice at the fork in my road. To look behind me that day, all I saw was frustration, pain, misery and hopelessness. Ahead, at the time, all I could see was more of the same. What I didn't see was that just around the bend there was the most miraculous of opportunities.

That was the MS attack that sent me to my primary care doctor who finally got fed up with the fact that I had been on autopilot with no neuro for two years and he chose his own fork in our intersecting roads. He chose to get proactive and insist I see a neuro and made me an appointment with one before I left the office that day.

Turned out the neuro was the one who got me into the TRANSFORMS clinical trial for FTY720 (aka Fingolimod aka Gilenya) and I have never for a single moment regretted it since.

To me, that trial and most of the last five years have been nothing short of miraculous.

I feel so much better today. I lost my canes for several years -- since I didn't need them I didn't know where they were -- and only rediscovered them when I went deliberately in search of them to aid me in air travel. Anyone who has gone through Atlanta will agree it might be a good thing to have your hiking gear.

I haven't had a panic attack since that time, although I admit I've come close on occasion, and my legs feel normal. No burning unless I overdo it.

I am active, I am happy, and most of all I can take care of all the family members who so depend on me.

So Happy Fifth Anniversary to me!! Get out the party hats and blowers, people! It's a big celebration and you're all invited.