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....

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:http://innovations.bbkworldwide.com/bid/150971/2012-is-so-2003, 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.

A.F.: 

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.

Sharing Clinical Research Data: A Workshop - Live Webcast - Institute of Medicine

Sharing Clinical Research Data: A Workshop - Live Webcast - Institute of Medicine

If you can get to it while it's still going on, there's some fascinating stuff being discussed.