Tuesday, September 27, 2011

Memory is a Matter of Perspective

Have you ever gone back to your childhood home to see the place you thought you'd never forget? I will bet your first impression was one of shock at how small the place is. You remembered it being much larger. But then you realize that last time you saw the place you were 8 or 10 or whatever and it WAS much larger because you were much smaller.

I had a similar experience this morning.

Six years ago when my son was only seven, he wanted to play T-Ball. We got the uniform, the bat, the shoes and all the other stuff you need to be a good t-ball player and good t-ball spectator and we managed to make it through one season before he decided it was not for him. He played right field and spent most of his time dancing with his shadow or watching birds and wasn't really into the game all that much.

I had been dealing with my MS for five years by that point. A cane was a permanent part of my wardrobe, and when I went grocery shopping I rode in one of their electric carts to get around the store.

I wanted to be involved in my son's life and encourage him in whatever he chose to pursue so I attended all the games despite the size of the sports complex and the fact that it was spring/summer in Florida which means sweltering heat and humidity.

It all ended after that first summer. He said he didn't want to do it any more and I was secretly relieved because it took so much out of me physically. It was such a huge place and just getting from the car to the field he played on (bottom left in Google image below) seemed like I was trying to climb Mt. Everest or cross the Grand Canyon on foot or something. It was a monumental task that often required rest stops along the way with occasional assistance from other spectators.

We had no reason to return to that ball field for the next several years until he started middle school. We got to choose which school we wanted him to attend despite our zoning and we chose the best one in the county. Unfortunately that meant a daily drive of over an hour to get him there and back. The trip was shortened dramatically when he started riding the bus which met us (and about 30 other families) half way. Where was the bus stop? The parking lot of that sports complex.

This is my son's 3rd year at that school and so for three years I have been parked in that parking lot which is surrounded by trees and hedges which obscure the actual sports complex. You have to walk past them to see the grounds.

Curiosity got the better of me this morning. I've been wanting to see how easy it would be to walk all around the grounds and it just so happened that an errand I was running took me past the sports complex during mid-morning when very few people were around.

I parked at the corner of the lot closest to the entry and got out. I had my smart phone loaded up with music and my ear buds in, ready to break a sweat walking all around the place.

As soon as I rounded the first hedge and looked down that never ending sidewalk I was stunned. The sidewalk wasn't long at all. Maybe a city block or so. Could it be that they've added things and shortened the walkway? Hmmm Everything still was as I remembered, just a lot smaller. No new diamonds, no new b-ball courts, same old concession stand.

I pressed on. I came to the "T" where I recall I would sometimes have to step off the path and set up my lawn chair to rest more often than not. I turned around, puzzled, and looked back to the parking lot.

Really?? That was as far as I could make it before? I was in total shock. The other sidewalk leading off of the T was not nearly the trek I recalled either.

After the shock of seeing the place I began to cry. I was so sorry for my old self and so happy for my new one. Tears turned quickly to smiles as I picked up the pace and made four laps around all of the connecting walkways and headed back to the car.

I never even broke a sweat.

It was one of the most telling and dramatic moments I have experience since starting on Gilenya. "You've come a long way, baby" doesn't even begin to express how I feel.

I might have gotten older in years, but I feel so much younger today than I did back then. Wow. Amazing to me how easily I slipped right back into taking even simple things like walking unaided for granted. I don't ever want to forget where I came from because I might miss out on feeling the sheer awe of what I can do now.

There's so much that is spectacular about "normal", "average", "boring" and "mundane". If you have the luxury of experiencing that, you are truly blessed.

Monday, September 12, 2011

Unexpected Tears

I had a meeting with a group of people at my son's school today. It was the annual Exceptional Student Education meeting to discuss his gifted education plan. What that means is that some of his teachers, the guidance counselor and the man who heads the gifted program sit around a table with me and my son and discuss their goals for him for the coming year.

The older he gets (he's an eighth grader this year) the more the discussion turns to his "plan" for after high school and how we are all going to help him get there.

Mr. Collier, head of the gifted program, in the middle of the meeting, said "I want to share something with all of you that happened this past week which touched my heart."

He went on to say that my son, who had come into sixth grade two years earlier with the goal of someday being a video game programmer had been showing remarkable signs of maturing over the past summer. He said that he and my son had a meeting last week in which they discussed his reassessed goals to see if he was still wanting to learn computer programming.

"That's when he said something that really made me proud and touched my heart," said Mr. Collier.

He said my boy responded "No, I've decided to go into science because my mother has MS and I want to find a cure."

The room went suddenly quiet for what seemed like a very long time.

I was sitting there with all of these relative strangers who, up until then, probably had no idea why I was using my cane today. After all, when they saw me at the end of last year, I was walking just fine. I could imagine a silent, collective "Ah! That's what the deal with the cane is!" going off in all their heads.

But that was only a fleeting thought. Mostly, I was so damn proud of my son. It felt as if his words had reached out and wrapped themselves around me in a big verbal hug.

And to hear them coming from someone he had shared them with when I was not around took me so off guard I burst into tears of joy right there and had to hug him in front of all those people.

He, of course, was thoroughly embarrassed and will probably stay as far from science as he can now in order to avoid any future situations like that.

But it was a moment I'll always remember. I sure love that kid.

Tuesday, September 6, 2011

A surreal encounter between epatient and pharmaceutical exec

All this time I never knew that I was living the life of an "ePatient". That's what they are calling us. We are the new trend that's been developing since the advent of the internet. Patients who no longer sit back and digest only what our doctors have to say or what we can learn from local support groups.

We are the patients who have gone electronic. The ePatients. We google, we surf, we join yahoo or Facebook groups, we tweet, we post, we reach out. We read everything we can on the topic that is nearest and dearest to our hearts. Our own health.

I started this blog in 2007 when I was wrestling with the idea of joining a clinical trial. My first instincts were to head to the internet and look for info. As naturally as the generation before me might have reached for the Encyclopedia Britannica, I reached for my mouse.

What I found was that I couldn't find information regarding a clinical trial from a patient's point of view. I needed so badly for someone to put a face on the process and tell me that a) not everyone dies if they join a trial and b) they didn't actually have to live at the study center in a cage, running on a wheel.

Deciding that I needed to take the chance despite the lack of e-reassurance, I jumped in. But I vowed to write a blog so that others after me might have a place to go. To look in through the exhibit glass and see that the "specimen" which was me, was doing just fine. Just don't tap on the glass or try to feed me anything but that 50-cent handful of pellets.

So the blog was born. I got much feedback from MSers who happened to land on my page by chance. Almost always it was either encouraging or inspirational. Many times it was both.

To this day it shocks me sometimes to know that there are actually people who are reading along. I guess I think I am sitting here in my solitary room, drafting my memoirs and merely storing them in cyberspace, forgetting that others can and do read it. Thank you for that. I am truly humbled.

But you are wondering when I am going to get to the point, aren't you? I piqued your interest with the title and, in my patented style, am taking forever to spit it out.

Drum roll please.........................................

It all started with the purchase of my new Android phone. Never having had a smart phone before, I was playing with all the gadgets it came with. One of them was Twitdroid. I set up my @FingoHead account and went poking around at what the app can do.

Now, while I appear to tweet fairly often, it's all an illusion. Behind the smoke and mirrors I have Twitterfeed doing all the work. Taking my blog posts, shortening the url, and posting to twitter for me.

Because of this, I never go there or see the direct messages I may have gotten. But with this new app on my phone and the fact that I was clicking around checking stuff out, I found out that @CraigLipset had DM'd me asking if he could talk to me about being an ePatient who blogged a clinical trial start to finish.

I answered on a whim, not digging any further to see who he was, figuring he was either a fellow MSer or a fellow blogger or something.

Imagine my surprise when, after sending him my email address, I get a response within an hour, and it's signed by Craig Lipset, Head of Clinical Innovation, Worldwide Research & Development for Pfizer Pharmaceuticals.

Wow. I needed a moment to absorb all that. And another moment to do what we ePatients do best: go google the heck out of him and see if it was legit.

Turns out it was. I won't copy and paste the email here, but let me just give you the gist of it. He is interested in the ePatient and the whole social networking angle. He said that he thought my blog was unique in that I was writing about my clinical trial from start to finish (with a lot of other crap mixed in, granted -- that being my observation, not his).

Here's the part that really gave me goosebumps: He said that he had followed my blog for the duration of the trial and that he has included the story of my blog in a few presentations: "including this past June at the NIH". What I wouldn't have given to hear that!! I wonder if there's a podcast of it somewhere?

Here is a very interesting read. A blog post written by Craig Lipset on the topic of the ePatient:

Long story short (okay it's too late for that), he asked if we could speak by phone. I sent him my number and he called last Friday morning. We spoke for over an hour and we both learned from each other, I think. If nothing else, he learned about the person behind the blog he'd been reading, and I learned that Big Pharma actually has at least one genuine, nice, down to earth, caring person behind the neon sign.

A big part of the discussion revolved around the future of blinded clinical trials and drug companies not having control over patients comparing notes. In the past, if you were in a clinical trial, the only place you might have encountered a fellow lab rat might have been in the waiting room of the study center. Now we can find each other everywhere on the internet.

It's only human nature to want to reach out and know you aren't alone. And by sharing experiences we can bond and overcome our fears.

The trouble is that bonding comes at a price.

I believe that not only will we see the Placebo Effect that is documented in clinical trials and a known phenomenon, but we will now start seeing the Hypochondriac Effect, where you find out someone else who is in your particular study (and may or may not be on the same stuff you are on) has a side effect (which may or may not be due to the study medication) and you suddenly are dead certain you, too, are having that issue.

What I have learned over the years of blogging the trial and observing/participating on message boards and support groups is that once we start sharing the questions of "is this a side effect" it can snowball out of control and start widespread panic.

Deep down I think that all of us suffer to one degree or another of Hypochondria. Some of us just openly admit it. :)

I cannot stress enough to anyone out there who might be reading this as they search for answers to their health related issues: You should speak to your doctor first and foremost. Go for a second opinion if you don't trust what he's telling you, and if you MUST go googling, do so on Google Scholar. Granted the results might be a little dry and hard to read, but they will probably be far more trustworthy than JoeBlow55's posted opinion on some unmoderated message board. (I made that up about JoeBlow55 so if that's you, here's my disclaimer: JoeBlow55 is a fictitious character who in no way is meant to be construed as an actual person in real life).

So, we concluded our phone call and I was left pondering the future of the ePatient and clinical trials.

Hopefully I will be able to continue as a trial blogger in the future... I am awaiting word of Novartis starting the long term Phase IV trial of which I have heard whispers.

If I'm going to be poked and prodded, I'm going to be here blabbing about it.

It's therapy for me, and if it helps you any, well, that's good, too.

And if you are reading this, @CraigLipset, thanks for the call -- I felt like I had been pulled up on stage to dance with the band for a moment. Best of luck in harnessing the empowered ePatient. You've got your work cut out for you.