Wednesday, December 30, 2015

Hang on 2016, I'm not ready

Like everyone else, I look forward to New Years as as good of a time as any to shed the baggage that built up over the previous year and begin again with a renewed sense of purpose and possibility. A collective sigh as we hit the reset button.

But as I look at 2016, I'm overwhelmed with the projects I've envisioned for myself:
  1. 12 marathons in 12 months
  2. ramping up Team Drea for another year of racing and fundraising
  3. selling our house and moving somewhere that makes sense for my current/impending physical needs
  4. writing a book
I look at this list and realize: no wonder I'm paralyzed about what to do first.

You see, all my prep to launch these projects got waylaid by the fact that I've basically been sick since the tirasemtiv submarine struck in mid-November. My sore throat on Thanksgiving Day turned into a cold that stretched into my Raleigh visit, followed by a new cold two weeks later that turned into a sinus infection and stretched through Christmas. Largely thanks to our parents (and always DP), Christmas was "successful" (great food, presents wrapped on time, we even sent out cards for the first time) and everyone had fun, while politely ignoring the soundtrack of my constant nose blowing, coughing fits, and an even-less-understandable-than-usual speaking voice. But all the time I was counting on to get ready for 2016 got wadded up into some mucus-filled tissues on the couch....

So yesterday, when the house was finally quiet again and I finally had the energy to survey the scene, I had absolutely no idea where to start.

Instead, I puttered around the margins, not digging into anything, putting away Christmas presents and cutting up Blue Apron. Needing some sort of direction to latch onto, I put on Shonda Rhimes' Year of Yes memoir. In her 2014 commencement address at Dartmouth, she talks about dreamers:
They stare at the sky and they make plans and they hope and they talk about it endlessly. And they start a lot of sentences with "I want to be ..." or "I wish."
"I want to be a writer." "I wish I could travel around the world."
And they dream of it. The buttoned-up ones meet for cocktails and they brag about their dreams, and the hippie ones have vision boards and they meditate about their dreams. Maybe you write in journals about your dreams or discuss it endlessly with your best friend or your girlfriend or your mother. And it feels really good. You're talking about it, and you're planning it. Kind of. You are blue-skying your life. And that is what everyone says you should be doing. Right? I mean, that's what Oprah and Bill Gates did to get successful, right?
No.
Dreams are lovely. But they are just dreams. Fleeting, ephemeral, pretty. But dreams do not come true just because you dream them. It's hard work that makes things happen. It's hard work that creates change.
Oh right, the hard work part. We all know this, but it sure is easier to dream big about what we'd like to do over the next year. To wait until all the baggage is shed and Christmas presents are put away and we're ready to wipe the slate clean and hit the reset button. But that's not usually how it works and why many New Year's resolutions fail. 
So that's where I am at the moment. I'm excited about my goals for 2016, but I'm at the Eve of New Year's Eve feeling a little more weighed down, worn out, and behind than I'd like to be.
What I learned in 2015 is that time passes regardless, but you get to decide how you want to spend it. 
What I know about hard work is that sometimes you just need to start somewhere. Pick the most logical place and start digging. Let the satisfaction of little victories build into momentum towards your goals (which are more concrete than dreams). Once you're moving again, make the lists and plans that will serve as the bridges and pathways to link you to your goals. 
But just start. So that's what I'm doing.


I wish you all a happy and healthy 2016.

Sunday, December 6, 2015

(Long Overdue) Race Report: City of Oaks Marathon

The last post about my tribes brings me back full circle to Team Drea weekend and the City of Oaks marathon, which took place more than a month ago…like Halloween (geez louise).

Fortunately, I had already drafted this post while the details were fresh (before Clearwater, before the clinical trial, before the gala, before Thanksgiving, before Be Brave Be Thankful). Unfortunately, the draft now feels hopelessly stale.

Oh well, it’s a sparklingly beautiful, decently warm day, just like Halloween, so I don’t mind rebuilding the post and reliving the sweetness and fun.

Team Drea Luncheon

Since so many Team Drea members were coming to Raleigh for the marathon, my parents and I decided to host a pre-race luncheon/ Halloween party as a chance for everyone to meet each other, hang out, and celebrate our awesome year together. This was also my attempt to say thank you to everyone for raising more than $75,000 for ALS research and for creating something so meaningful.

I was a s’more, which took people way too long to guess (hanging chad?? c’mon). DP was a slice of Ashley’s banana bread which goes in all of our care packages. But my graham and his costume kept getting in the way of hugs so they quickly got ditched.

Here were the real costume contest winners:

Jillaine & Jodi...the adorable GUs
Shannon's daughter, Morgan, the adorable strawberry
I put together an icebreaker bingo game, which got everyone mingling by trying to find people who fit categories like “Is an Ironman,” “Did more than 5 events this year,” and “Live/Has lived in Ohio.” All of which fit more people than you might expect.

I also put together a slideshow recapping the year and laying out the vision for Team Drea 2016 (more to come in a future post). I also got the sweetest gift from the team: a framed word cloud of words that they’d use to describe me. I’m happy “badass” made it, but “pain in the ass” didn’t...obviously, DP was consulted on a good day ;)


The best gift though was just watching everyone meet and talk – I love these people and think they are all uniquely special and amazing, but they don’t know how uniquely special and amazing each other are. When else does one get this chance to have in one room their friends and family who are otherwise scattered all over the country? It was like a wedding, but without all the stressful pomp & circumstance.


We did have one special ceremony: spreading some of Jon Blais’s ashes on Lake Johnson. It was Jon’s wish that his ashes would be taken to new places and races that he would never see.

In yet another crazy coincidence of small world-ness, Jon’s childhood friend, Greg, joined Team Drea this fall because he works with Jillaine’s husband. He spoke about Jon and the inspiration he’s been to Greg’s life. Jon and Greg did BMX races together back in Rhode Island. Greg was also featured in Endurance Magazine (another crazy coincidence) as a brain cancer survivor and triathlete. Amazingly, Greg had a second surgery just a month before City of Oaks and made our race his short-term recovery goal.

Pro triathlete and coach Carrie McCoy of JustTri also spoke about the inspiration Jon has been for her. She has been supporting the BlazemanFoundation for eight years and two of her triathletes, Kelly and David, did their first Ironman race this year as part of Team Drea.

Greg and Carrie spoke far more eloquently than I could have in this most reverent of ceremonies and I felt his presence as I scattered his ashes in the water.


City of Oaks Race Report

At the lunch, I (logically) kept getting the question “are you ready for tomorrow?” To which I replied, “Oh yeah, I kind of forgot about that…” Compared to planning a party for 65 people, a marathon seemed pretty easy peasy J

Even with the time change giving us another hour, DP and I were scrambling to get to the start line…meeting up with our teammates just before the end of the national anthem, and worrying them just a little (oops).

Per the race committee’s instructions for my trike, Team Drea lined up at the back of the race pack. In all, we had 25 people running as part of a relay, or doing the 10k or half marathon. I only had a moment to look around and take in everyone…surreal. Here we go!

At the start, I took off flanked by Relay Leg #1 runners Jodi and Amy, and Melissa who was running the half.  Since we were maintaining a 9:30-10:00/mi pace, we passed a lot of people. Amy summoned her best race director voice and she and Jodi yelled “on your left” constantly as we cruised along the edge of the pavement. Most people took it in stride once they saw the trike, though I bet we were kind of obnoxious J

I was mostly focused on weaving through the foot traffic and not clipping anyone’s heels, but I relished listening to Jodi and Amy getting to know each other as they ran. Both women have three kids. They’ve both run the Chicago Marathon. Jodi lost her mom to ALS and Amy’s mom passed away five months after her eldest daughter was born. In past races, they both wore pictures of their moms. I love and admire these women so deeply – watching them connect was almost more fun than the ride. Almost.

On Leg #2, Jodi’s sister Jillaine and her husband, Jon Wolverine, stepped in and away we went with Melissa (who was running at least 1:00min/mi faster than she’d planned). Jillaine pulled out what she called her "I'm one of six kids" voice as she cleared the way for me. But it was far easier as the pack thinned out and we fell in with our real pace group before we got to the more narrow greenway section. We said farewell to Melissa as the half marathon course turned off.

I kept flashing back to 2013 when I ran this leg as part of a relay. It was officially my last run ever, when I realized that something really was wrong because I was having to walk the downhills or risk faceplanting over my toes. I allowed myself to feel vindicated. ALS hasn’t beaten me and a year of dedicated work led to back to these woods and this weekend with my friends and family. I’m still me – actually, I’m a better me. It took a lot of courage to get to this day, but this, this was just plain fun.

At the same time, I’m beyond thankful for my slow progression. My race was dedicated to Lisa, also a runner, who died in May from ALS after only a year of diagnosis, two years of marriage, and only two days after her 32nd birthday. In the months before she died, she asked her mom to take care of me, bringing the whole feisty, fun, and fiercely loyal McMillen clan into our lives for which I will be forever grateful.

On Leg #3, I reunited with Carrie, one of my best friends from middle and high school. I’m so proud of her -- not only did she do a ridiculously hard ninja obstacle 5k course (her first race ever) earlier this year, she discovered by working with a nutritionist that she has a gluten sensitivity and now she feels better physically than she has in a long time. She also now has a trainer and worked up to this 5-mile segment. I made her run in front of me to set the pace and walk when she needed to…but she didn’t need to. She may profess still not to like running, but not gonna lie, I again felt a wee bit vindicated J

I'd hoped to run this leg with my matron-of-honor, Cathy, too but her speedy husband Will ran the first two legs too fast for me to catch up!

Ran practically the whole race with the guy in the tutu
(in the background) who must have lost a bet.
On Leg #4, Julie swapped in for Carrie. Here we ran into one little problem. DP’s relay partner hadn’t come in yet. He waved us on and we promised to go slow, a move I began to feel more and more guilty about with each pedal stroke. There is no way DP would ever have left me. So we took a break at the next porta-potty – not gonna lie, that qualifies as a race highlight because I had stopped drinking water awhile ago to take mercy on my peanut-sized bladder.

Eventually, DP caught up to us and of course, he’d sprinted for like 2 miles. Just in time for the uphills (the flip side of the downhills in Leg #2). He had to push me more than when Julie and I did our practice run a couple of weeks before…but it was Mile 22 after all. Sorry, DP:-/

As we exited the greenway, what had started out as “oh how nice, a refreshing mist” had turned into rain. Doug (with Ella in the stroller) caught up to us and was trying to get me to sprint to the finish. But we were already pushing Julie’s pace and obviously, that girl would never leave me. So I cruised along, content.

EVERYONE joined us for the last quarter mile. They’d all been hanging out at Bruegger’s (be still my heart!) waiting for us. So the sea of Team Drea crossed the finish line together. Loved it!!

My official time, in case you care (I don’t) was: 4:53:43. We even got some press coverage :)

I want to thank everyone from Team Drea for racing with me, many of whom traveled across states to be there. Also my aunt, uncle, cousins, bitty on her crutches, my mom’s co-workers from Coldwell Banker HPW, and all of our friends who came to watch. This was a very special weekend for me, but would have been just another ride without you! Let's do it again soon, shall we??






Tuesday, December 1, 2015

My Tribes

Now that the tirasemtiv submarine is no longer a threat, I now feel free to write about all the magic* in my life that has exploded into being over the past month.

[*Yes, as Elizabeth Gilbert’s new book, Big Magic. If you have not read it, I suggest you or your fingers run-not-walk to Amazon, Audible, or your local independent bookseller. NOW.]

ALS.net & the White Coat Affair

On Saturday, the day after I stopped the drug, DP and I spent the morning becoming ALS.net “ambassadors”* for their outreach in the coming year.

[*Don’t bother getting confused. The ambassador training in Clearwater was completely different. ALS.net operates a nonprofit biotech lab called ALS-TDI in Cambridge, MA which is the only one in the world 100% dedicated to finding a cure and treatment for ALS. You may remember that I was asked to be a Young Faces of ALS ambassador for them back in May, in fact, the day Lisa died.]

This training started with the ~15 of us introducing ourselves and the story of our connection to ALS. It took well over an hour, but as the newest members of the group, DP and I were both moved. Each person spoke passionately about their loved one (or themselves) and why they believe ALS.net is the most innovative, cutting-edge, dedicated and promising hope for a cure. They weren’t proselytizing for our sake; they're smart people who have done their research – otherwise, they wouldn’t spend (/have spent) precious hours left in their loved one’s lives working so doggedly on behalf of the organization.

It was the very same passion that drives Mary Ann & Bob Blais, and Jon before his death, with the Blazeman Foundation. I’ve never seen that depth of conviction so up close and personal anywhere else in ALS-land.

The other big event of Saturday was ALS.net’s fundraising gala, the White Coat Affair. I’d been asked to give a short, 3-minute speech as part of the program. After dinner, there were 3 pairs of speakers – a person with ALS and an ALS.net staff member – sharing their stories and discussing the research.

I spoke last and was more than a little intimidated to be following Pat Quinn, one of THE founders of the Ice Bucket Challenge that brought in $220 million worldwide in 2014. At the last minute, I made DP come up to the microphone with me to hold my speech and calm my nerves…or at least keep me upright.

Because of my ALS speak, what would have been a 3-minute speech actually lasted six. Here is the only video that I know of that exists (thanks Katie!). If you’d prefer a shortcut (and because the cell phone audio and my ALS speak are not that clear), I’ve pasted the text at the bottom of this post.

I had NO idea that my little speech would have the impact it did. I spent literally the rest of the magical evening having one heartfelt conversation after another with the most resilient, open, loving strangers I’ve ever met in one night. They cried, I cried, we laughed, we hugged, we took photos, we connected.
ALS.net ambassadors: Teresa, Beth, me. LOVE THESE LADIES!!
I think it’s important to explain that, up to this point, I never actually met my best friends with this disease because most of them died long before I got it. I met Darcy Wakefield through her book, Jon Blais through NBC and his parents, even Lisa I only met in person twice. I know her best through the time I’ve spent with her mom and siblings after her passing. So to be in the presence of real life LIVING people with ALS, all doing amazing, courageous, inspiring things with their lives to raise awareness and money to find a cure…that was when I knew I’d found my ALS tribe.

I’ll just give you one example. Arthur “Arty” Cohen and his wife, Janet, were at our table. Arty is the Chief Pickle Officer (CPO) of PickALS, a nonprofit in Maplewood, NJ that sells pickles to raise money for ALS research. Cukes for a cure.

Even though ALS has taken his voice completely, we carried on like old friends as he typed with one thumb on his iPhone. When he wasn’t “talking,” his hand was over his mouth, shoulders shaking in silent laughter. We discovered our tuxedo cats, Charlie and Lizzie, must have been separated at birth because they’re practically twins. Tomorrow was his 29th anniversary with Janet. He was genuinely happy – no, he was brimming with joy – just as caught up as I was in the enchanted energy of the evening, watching the beautiful souls swirling around us who’d endured so much heartache that could have stolen their spirit. And still, there they were laughing, hugging, taking photos, connecting.

“I don’t want it to end!” he typed to me at close to 1am.

Me neither. Ever.
Our AWESOME Table #28! Arty & me (with our uber-important thumbs) in front. ALS warrior Rob behind Arty.

Be Brave, Be Thankful

My FB newsfeed is totally schizophrenic these days.

One post from an ALS group reads: “My sister has stopped wearing her bipap because it dries out her mouth. We've adjusted the humidity and used biotene before she puts it on but nothing seems to help. The strap they gave us to help keep her mouth closed doesn't work. Any suggestions?

Next, a post from Swim Bike Mom's triathlon group, the Tri-Fecta, reads: “Anyone have a Specialized Alias bike? Thinking of getting one. What do you think? Which model do you have? TIA

It’s wacky. I have thought about dropping out of the Tri-Fecta – what do I care about wetsuits, aero position, or new sneakers these days? But I haven’t because I still consider myself a triathlete and I’ve made friends in the Tri-Fecta who have supported me since my diagnosis who I like to keep up with.

Then the Tri-Fecta came through for me in a way I never expected.

When Meredith Atwood, the SBM herself, approached me with her idea to do a “virtual race” honoring me and benefiting ALS, my eyes bugged out. My idol, my triathaHERO since 2013 when I listened to her book on repeat all summer leading up to the 70.3 said what the what?? I had no idea what a virtual race was but of course I said yes.

The Be Brave Be Thankful virtual race turned out to mean that anyone, anywhere could sign up to run any distance over the Thanksgiving holiday, email the results (+ photos and why they were thankful, optional) to receive a medal and t-shirt. A portion of the registration fee and any additional donations would go to ALS research. Honestly, I loved the idea even if it didn’t raise much money – encouraging people to take on a physical challenge, or at least get out and be active, and be grateful especially for what their bodies can do – hmm, that felt smackingly familiar. It’s why I created Team Drea in the first place.

The event didn’t disappoint. We had the most beautiful Thanksgiving weather I can remember, so my parents, DP, local Team Drea members Sapna and David, and I headed out to the greenway. DP and I took off at our own speeds (expecting everyone else to do the same) but Sapna walked with my mom and David walked with my dad. It was very sweet. I’d expected to go into some nirvana reflective state swept along by my carefully orchestrated playlist, but when an earbud fell out, I heard children shouting and dogs barking nearby and well, I never put it back in. I just rode along happy and thankful that I could.

It was the cherry on top – or, I guess this being Thanksgiving – the whipped cream on the pumpkin pie (or my personal equivalent – the stuffing in the mushroom ;) )


I loved reading the posts roll in over the weekend. There were my sweet friends and Team Drea members with their families, all who have become like family to me – they’ve already done so much for this cause, for me, and yet were back out there again, smiling and appreciating. Then there was the Tri-Fecta – more or less complete strangers out there doing the same for some woman they’d never met for a cause they likely didn’t have a personal connection with. But they got it.

So these are also my tribes. The one I built with my friends and the one that materialized out of the very BEST of the multi-sport community to support one of their own.

Photo credit: PopSugar
Brave, yep. Thankful, you betcha.

***

Transcript of my "3 minute" speech

Before I was diagnosed with ALS, I was the senior program manager for a nonprofit focused on sustainability. We preached the message that our communities should strive to meet the current needs of our planet, while leaving it better for our children and future generations.

Now that children are no longer feasible for me – my husband and I don’t even qualify to adopt a starving child from a slum in India – my life’s mission to leave our world better for future generations of ALS patients. 

I was diagnosed in 2014 at the height of the Ice Bucket Challenge, so I have never known ALS without hope. Pat, Pete, and countless others paved that way for me.

And so I asked: “what can I do?”

I’m a half Ironman triathlete and marathoner and those activities have taught me a lot about life, including being grateful for what the human body can do. So this year, I challenged my friends and family to take on a race that represented a challenge to them and to use it as an opportunity to raise money for ALS research. We have everything from my 70-year-old mother who ran her first 5k -- to me. Two weeks ago, on my recumbent tricycle, I completed another marathon.

But my wallet and my network of friends are only so large. In looking around I asked “what else can I do?”, I realized that a valuable gift I can contribute is my body to advancing the cause of ALS research is what I can do to help future generations with this disease. So that eventually, there are no more generations with this disease.

That’s why I'm here with ALS.net. Every interaction I’ve had with the staff and everyone associated with this organization has reinforced that they are laser-focused on the cure.

I’m only up here because I haven’t lost my voice or the ability to travel. But I represent a huge community of people who don't have this opportunity. For all of us, I’m doing everything I can, while I can. But unless I’m Stephen Hawking, that won’t be very long.

To be honest – I’m scared. I’m scared for my elderly parents since I’m an only child. I’m scared for my husband who has to watch me decline, and then has to figure out life without me. And I’m scared for myself – I'm scared for the loneliness and the humiliation as I lose my abilities. I really don’t know how to do this, but I am trying to make as many positive memories. While I can. For all of us.

So I implore you to ask yourself the question: “what else can I do?”

Thank you.

Monday, November 23, 2015

You (Almost) Sunk My Battleship!

Clinical trials are great...unless they leave you dizzy, sobbing, paranoid, and not sure if you are hallucinating.

This is not the topic I want to be writing about. I should be polishing off and posting my marathon race report, or attempting to convey our life-changing experience at ALS.net's gala last Saturday night (posts coming soon!), but I can’t seem to focus on either of those assignments until I clear the submarine that almost sunk my battleship last week. And just like the game of Battleship, this attack wasn’t even on the radar…


Backstory

Two weeks ago, DP and I were in sunny Clearwater, FL for the NEALS Clinical Research Learning Institute. This program teaches people with ALS and their caregivers about clinical trials with the hope that attendees will participate to advance the science and become “research ambassadors” within the ALS community encouraging others to participate as well. Surprisingly (given how desperate we all are for a real treatment or a cure), many clinical trials can’t find enough qualified patients to enroll.

DP and I learned a lot from the training (and met many compassionate, committed researchers and made a ton of new friends!), but here were our 3 main takeaways relevant to this Battleship story:
And okay, we had a few drinks by the pool
  1. You need to know that the primary goal of the trial is to advance ALS research. It seems like cruel irony, but people with ALS typically only have 2-3 years from their diagnosis date to enroll in a clinical trial. If you’re still alive after that point, you’re usually excluded from trials because it’s assumed you have a slower progressing form of ALS…in other words, the researchers can’t tell if their medicine is working or it’s just YOU. 
  2. You need to be an informed consumer. Understand the basic science behind the trial, what phase it’s in, and what the drug is supposed to do. Understand that this may be the only shot you have at a trial to save/extend your life, and even then, you might get the placebo.
  3. You can drop out of the clinical trial at any time. If you do though, the resources and potential scientific advancement is lost. But it’s YOUR life and the only one you have… 
Enter Tirasemtiv (the Submarine)

The training was perfectly timed for me because the day after I got home, I started a clinical trial for tirasemtiv* – a drug to strengthen the lung muscles, since respiratory failure is the actual cause of death for most people with ALS. Early trial findings also showed increased strength in the arms and legs (to which I was like, “yay, bring on the marathon PRs!”). This is a Phase 3 trial so if it all goes well, is likely the last hurdle before FDA approval. 

[*For the record, this would be the second drug approved in the US for the treatment of ALS. The first, riluzole, statistically extends life a whopping 2-3 months.] 

According to my neurologist and Patients Like Me, some people in the Phase 2 trial experienced negative side effects – vertigo, nausea, lightheadedness, confusion, headaches, and stomach cramps/GI issues. As a result, Phase 3 is designed to test for the side effects first. Everyone gets 250mg of the drug for the first two weeks. If you can tolerate the side effects, you are double-blind randomly assigned to take 250mg, 375mg, 500mg, or the placebo daily for a year with periodic appointments to test strength and vitals. In other words, 75% chance of getting the medicine…

Okay, sweet. Let’s do this thing!

The Battle

I felt fine on Monday when I started the drug.

By Tuesday, I felt like I’d taken too much NyQuil or Advil PM but was still trying to stay awake. I had some mild side effects when I started other medications too, so I wasn’t really alarmed.

By Wednesday, I asked my acupuncturist to forgo the treatment she’d planned to do on my too-tight hamstrings in favor of an anti-vertigo treatment. I also cancelled a trike/run date with Ashley (the REAL sign I was feeling bad!). I convinced DP to pick up takeout instead of cooking dinner so I could stay curled up on the couch to minimize the world spinning.

By Thursday, I woke up even more foggy, groggy, dizzy and sluggish. But my friend Angela had secured for me literally THE LAST appointment available in the tri-state area at the DC Social Security office during Medicare open enrollment. DP’s open enrollment deadline at work was the next day too. In short, it was the single best shot I had to untangle the health insurance mess that has plagued us since June*…and position us to be able to order my power wheelchair sometime in 2016.

[*Side note: I cannot be the first person in America to have applied for Medicare while on a working spouse's health insurance. Why is this so hard??]

So I had to go. And because I hadn’t anticipated the severity of the tirasemtiv side effects, I was stuck driving myself to/from the appointment, alone. Nothing bad happened – no honking, weaving, or close calls to signal that I was actually driving badly – but the vertigo was so bad that it was all I could do to concentrate on the road required a lot more concentration*

[DP and I had a loooooong conversation about this paragraph. In retrospect, it was a mistake for me to drive. I have promised him that I will give up driving when it is no longer safe. I am still a good driver, but not on this medication. I'm sorry, DP!]

Screenshot from Google Streetview
I arrived at the Social Security office early for my appointment and saw one of those handicapped automatic door openers beside the entrance. Whew, I thought, such a relief to be at an ADA-compliant federal agency. After all, it was Social Security whose existence is to serve the needs of elderly and disabled people.

But as I got through the automatic door with my walker, I realized there was second door to get into the office – this one with NO automatic door opener and NO windows for anyone on the inside to see that I needed help. There was nothing I could do but oh-so-carefully pull the door open while backing up, and then gingerly wedge the walker (and myself) through the doorway to avoid falling.

Someone motioned me to an empty seat on the other side of the crowded room. While I tried to figure out what I was supposed to be doing, the security guard standing near me asked the entire room, “WHO HERE IS A REDSKINS FAN??” and proceeded to carry on a lively discussion with those who answered. This struck me as so bizarre that it punched through the fog to reach my vertigo-addled brain. Wouldn’t he be more effective standing near the door to help people get inside and figure out where to go? I wondered.

I was called before my appointment time, which would have been nice but Angela, who was coming to help navigate the bureaucracy, hadn’t arrived yet. In my slurred ALS speak, I tried to explain what I needed to do with Medicare to which the Soc Sec woman said, “oh? Is that all? Here’s the form. But your other insurance provider needs to initiate the process.” Wait, huh? FOUR other knowledgeable people (the ALS Association rep, DP’s insurance provider, a Medicare insurance consultant, and the wheelchair company rep) had told me the exact opposite. Fortunately, Angela showed up then and I made the woman re-explain it to her to make sure I’d understood her correctly in my current state of delirium.

Thursday went on and on and on like this, including multiple calls to DP’s insurance company, forms filled out that turned out not to be necessary, etc. etc. I started to write it all down, but I think this one vignette – the door and the appointment – captures the symbolism of the day: a bureaucratic catch-22, something simple and well-meaning that turned out to be inexplicably hard and kind of dangerous (physically or financially), and frustrating beyond what my poor dizzy, confused brain could comprehend.

Throw in a bunch of other random "hits” (to stick with the Battleship game analogy) like a bomb threat that snarled traffic downtown, the flash of a speed camera I saw in my rearview mirror, a black squirrel who sprinted through the legs of my walker chasing a grey squirrel, our beloved-but-rambunctious INDOOR cat Tango getting outside where I couldn’t catch her...and, well, you can see why I ended up sobbing, paranoid, and convinced I was hallucinating by the time DP got home from work at 9pm.

In short, a bunch of the small boats of my sanity got torpedoed.

Some of this cannot be blamed on tirasemtiv, but my ability to cope with what happened can.

Game Over

Scientific lectures complete with fascinating MRIs of lab rats!
Despite it all, including the 11pm pizza delivery and 1am online health insurance enrollment, we made our 7:30am flight to Boston on Friday morning to attend ALS.net's Leadership Summit. By 10am, I was fully submersed in 6 hours of scientific lectures, panel discussions on clinical trial design, and an awards ceremony. 

But the physical side effects had caught up to me. Now compounded by lack of sleep, I faced the still-worsening vertigo, drowsiness, slurred speech, and – for the first time – an inability to overpower my foot drop. I did a 26.2-mile marathon in my trike two weeks before and now I was too unsteady even to walk across the room by myself with my walker.

I emailed the tirasemtiv clinical trial coordinator and asked her what I should do. She called me a couple of hours later and I said something along the lines of “how do I know how much is too much? I don’t want to drop out of the trial, but I feel awful.”

“It's up to you,” she told me – a fair, true, but completely unhelpful answer.

I was in bed in our hotel by 6pm. I slept but woke up for takeout DP brought just as the Paris terror attacks were unfolding. I wondered again if I was hallucinating. Again, I drifted off to sleep.

At 4am, I woke up with the clearest single thought I’d had all week, I’ve had enough.

Googling more about the side effects of tirasemtiv, I found this article on ALS-TDI’s website with findings from the Phase 2b trial. “Tirasemtiv may help reduce the decline of breathing capacity and muscle strength of some people with ALS,” the headline read. “But tolerability of the drug remains a considerable obstacle going forward.”

Apparently, more than 100 patients out of 711 dropped out in the first week of the study due to an inability to tolerate 250mg of tirasemtiv – the same dose I was now taking. If I stayed in the trial, I’d have a 50% chance of being randomly selected to get 1.5x or 2x that dosage. Moreover, 3x the number of participants dropped out of the clinical trial compared to those on placebo. And that trial was only 3 months – my trial was a year.

Hit. Hit. Hit. Hit. Hit. Hit. Sink.

It’s over, I thought. Thank goodness it isn’t even a close call.

Game Theory

It took a few days, but I'm back to feeling my ALS normal.

I’m grateful to the NEALS research ambassador training in Clearwater for teaching us so much about clinical trials and HOW to be an informed patient. I haven’t been scared off from clinical trials – I’m eager to try again before my eligibility window closes. But I know now that I need to do more research on the front end.

I encourage other people with ALS to enroll in the tirasemtiv trial. I pray that it works for you. I pray that it works, period. I also would strongly encourage you to apply to become a NEALS research ambassador. We need more ALS patient participation to advance the science and cure this damn thing. But nothing is more important than your battleship. It’s YOUR health and YOUR life and it’s the only one you’ll ever have.

(And I will never be able to look at pharmaceutical commercials with their long list of side effects the same way again. Ever.)