Walk MS

It’s MS Awareness Week: MS = 1 day at a time #msequals

Hey everybody! Multiple sclerosis is a thing that exists!

There, now you’re aware. That wasn’t so hard. Problem solved!

Huh. Probably should’ve done that sooner.

Wait… I think multiple sclerosis is still a problem. And I think there are people that may not have read this yet that don’t know about MS. I guess I’m not done after all.

As I’ve shared in the past, my wife Nahleen was diagnosed with MS over 8 years ago. Multiple sclerosis is an autoimmune disease that damages the ability of the body’s nerve cells in the brain and spinal chord to communicate with each other. This leads to a variety of symptoms, usually different for each person, that can include coordination and balance problems, muscle weakness, fatigue, pain, speech difficulties, cognitive lapses and other fun stuff. The severity can vary wildly but generally (but not always) gets gradually worse over time. The cause is unknown. There is no cure.

The National MS Society is trying to change that. They do amazing work to raise money for research and treatment. They also organize workshops, seminars and other activities to help people live with this disease. They have been a great resource for us and their proactive involvement has helped produce the first oral medication for MS, Gilenya, which Nahleen started taking a few weeks ago.

Before that, Nahleen treated her MS with one of four self-injected medications. Yes, self-injected involves stabbing oneself with a syringe deep enough to get between the fat layer and muscle. Depending on the type of medication, this is done either daily, every other day, three times a week, or once a week. The worst thing in the world? No. But the process was not a good time. Pre-medication (Tylenol for the pain and numbing of the injection site with ice), preparation, injection, clean-up. Then there are all sorts of awesome side effects for each version. For Nahleen, she experienced flu-like symptoms like a fever (she would usually wake up in a sweat in the middle of the night after each injection), muscle aches, fatique, depression (Hey, aren’t these some of the symptoms for MS? Why yes, yes they are.), and injection site reactions (bruising, swelling). Oh yeah, and it hurts. Sometimes barely at all, but sometimes quite a bit.

So yeah, switching to a pill kind of feels like winning the lottery. Side effects are minimal to nothing so far. (Although we might need the real lottery to pay for it.)

If that’s all the National MS Society did, I would love them forever, but they do so much more. Like organizing Walk MS events, which we usually do (but sadly not this year), Bike MS, and MS Awareness Week, where they’re asking what MS means to people. You can post your answer at that last link, or tweet including the hashtag #msequals, make a video on YouTube or post a blog like I’m doing.

My answer is in the title of this blog. MS = 1 day at a time. One thing I had to abandon was what I expected to happen tomorrow, next week, next month, next year, forever. Every day is different for Nahleen, and I have to be willing to allow for a drastic or slight change of plans. Whether it’s about grocery shopping tomorrow, flying back east to visit our families this summer, or great big life decisions and dreams 5-10 years from now, I have to be able to let them go. Sure, it can make RSVP’ing for birthday parties challenging, but we’ve found that most of our friends understand. It takes being patient, forgiving and willing to… improvise. Why yes, maybe there’s something to those improv comedy shows I do with the Magic Meathands that help me accept and adjust. Even comic books offer a way to look at life that can help in dealing with all of this. Comics, or sequential art, break up life into snapshots or moments of time. Appreciating that moment, within and without the context of the moments (and life) around it, give me a gratitude for the times Nahleen and I have together regardless of whether it was the big date we were “supposed” to have, or a quiet and careful night at home.

Nahleen and I may not be doing Walk MS this year, but we would still love to help raise money for the National MS Society. We’d like to refer you to two Walkers this year, and hope you will consider donating to them. Michelle Hazan is a friend of ours and has been on our Walk MS team for several years now. Through the magic of Twitter, I met Angelina Fuller (@Symph0ny) who is doing her very first Walk MS this year. It would be amazing if our people could help them reach their goals.

Also, if you’re in the west LA area around lunchtime (12-2 PM), there will be a different food truck camped out at the National MS Society Southern California office at 2440 S. Sepulveda Blvd., Los Angeles 90046 each day of the week, to celebrate MS Awareness Week. 10% of sales goes to the National MS Society. Naan Stop and The Surfer Taco trucks were there Monday, yesterday saw Cali Cuisine (aka the Calitruck), and today will have three trucks hanging out in the So Cal office parking lot: Don Chow’s Tacos, White Rabbit, and the Calitruck! I heard there was a 45-minute wait yesterday with only one truck there, so the lines should be moving faster today. Check out the Facebook page for Walk MS SoCal & Nevada for tomorrow and Friday’s food trucks, and to hear more about their efforts to fight MS.

Thank you for donating to the National MS Society

Nahleen and I at last year's Walk MS (click above for more pics of us at Walk MS 2010)

Yesterday my wife and I got to experience first hand the benefits of the last several years of our friends, families, and in some cases complete strangers, donating to the National MS Society through our participating in the annual Walk MS events. (Last year, I walked in a dress and heels (right).)

My wife Nahleen was diagnosed with multiple sclerosis 8 years ago. MS is a baffling disease. There’s no cure and it manifests itself in everyone differently. She was put on a treatment of Betaseron, which required her to inject herself with a needle every other night. Yes, there are worse things in the world, but it hasn’t been pleasant.

Despite the challenges, we carried on and adapted to our altered lives. We kept working, got married, and continued to pursue our creative dreams, while also juggling doctors, insurance, appointments, tests, treatments, etc. Life continued on until her symptoms spiked dramatically last summer. Her liver kind of went bonkers and she got real sick. It turns out she also has lupus.

Apparently, multiple sclerosis and lupus are both autoimmune diseases, and one following the other isn’t entirely out of the question. (There’s also the possibility of mixed connective tissue disease but that’s not currently the theory we’re working under.)

Nahleen has worked extraordinarily hard since the summer to crawl out of that pit she was in. It is an extremely slow and gradual process. Fortunately she has a vibrant spirit.

A big step was taken yesterday. When her liver started evicting its residents, they took her off of Betaseron since it’s processed through the liver. So she has been without any MS treatment for well past 6 months. Through incredibly fortunate timing, a new MS drug called Gilenya recently became available. It is the first MS oral medication (meaning, it’s a pill). While still very new, it’s incredibly promising: less side effects for most and extremely effective in keeping the body from attacking itself.

Yesterday, Nahleen had her first treatment of Gilenya. There was no pre-medication necessary. No icing the injection site. No mixing of chemicals. No loading a needle into an injector. No stabbing. No fevers and flu-like symptoms afterward. Simply wash a pill down with some water. Emotionally and psychologically, this is a huge relief. The big stress was the 6-hour observation for the first treatment to make sure she wasn’t among the minority that responded poorly. Fortunately it went smoothly. From here on out, it should be a simple matter of taking a pill once a day at around the same time where ever she happens to be at that time. This is a definite improvement.

Of course, it doesn’t mean everything’s all better. There’s still a ways to go to recover from last summer. We’re taking this year off from Walk MS to focus on her recovery. But please consider walking on your own or donating to a friend’s walk. If you or someone you know is walking, please get in touch and I would be happy to feature you or them.

Nahleen and I have a lot of hope for the future. She is being treated for lupus and she now has new and improved treatment for multiple sclerosis. And that didn’t just come out of thin air. The National MS Society provided a lot of resources to get Gilenya to market. They helped with funding, research, and testing. I don’t think it’s hyperbole to say that if the National MS Society didn’t exist, Gilenya wouldn’t be here now. And the only reason they are as effective as they are is because of those of you have given on our behalf. Over the last 3 years, our team raised about $40,000. It is thanks to your inspiring generosity. Thank you.

WalkMS – over $1K raised so far!

For a second time, I have just broken past my fund raising goal for the Greater LA Walk MS!

My original goal of $500 was quickly surpassed within four days of my announcement, in tribute to my wife Nahleen who inspires me in her battle with MS every day and the 84-year-old woman from New Jersey who rides her single-speed bike 150 miles every year to raise money for MS. It is slightly over two weeks later and my increased goal of $1,000 was just met!

Tremendous thank yous to everyone who has donated and emailed or messaged me with enthusiastic support!

What should my next goal be? How much would you pay to see me in a heels and dress? Yes, that’s right. In case you forgot, I’ll be dressing as the lady pictured above. Click the image to read the original CNN article, which helped me come up with this goofy idea.

Here’s my updated and spruced up Walk MS Page. And here’s our team page (we’d love to have you join our team! Don’t worry, you don’t have to dress up like me.).

Greater LA WalkMS 2009

MSwalk09-feetI just got back from a nice long weekend vacation to the Sequoia National Park. Absolutely stunning and wonderfully relaxing. Just what we needed.

While walking along trails weaving around mammoth trees thousands of years old, I was sometimes reminded of the last time Nahleen and I did some heavy walking. 

It’s been about a month since the WalkMS event for Greater Los Angeles. We walked the same path as last year, but the Rose Bowl was much hotter. And of course, the current financial End Times made fundraising more challenging. Despite that, our team still managed to raise $10,000. And where people couldn’t donate, they were inspired to support us in other ways, either by walking with us, walking at local events in their neighborhood, talking about MS to others, or sending encouraging thoughts our way. Everything made a difference.

Like last year, the money we raise will go directly to fighting multiple sclerosis and providing resources to making daily life easier for those with MS.

Once again our friend Rose Kwasnicki and her camera was there with us. Here’s some choice moments.

(Oh and yes, those are Nahleen’s feet at the top picture.)

 

MSwalk09-teamHere is us with the rest of TeamMS. Lots of people came back from last year and we also had some new faces! Great team and great group of people! Kelly Garver (center with the black shirt) was a great captain. Zena Leigh returned with her husband Conor Logan of The Logan

Of course, we weren’t the only people there. 

MSwalk09-crowdHey, down in front! There’s always that guy.

MSwalk09-vipBecause of our mighty fundraising efforts from last year, Nahleen and I were given special VIP passes. This gave us access to a special tent with refreshments, food and, most valuable of all, shade. 

It also made us frighteningly cheery.

MSwalk09-coreynahleenvip… although everyone around us was pretty much ambivalent.

Once we composed ourselves, we were back to the task at hand. Walking!

MSwalk09-nahleenteamwalkWe sure look happy and energetic. Nothing can stop us!

MSwalk09-teambreakOK… so maybe we took a little break. But it wasn’t our fault. It would never have happened if it wasn’t for all that walking. And the hot hotness. And not the sexy kind of hot hotness, but the temperature kind where you get unsexy hot. For further proof, there’s this:

MSwalk09-coreyhot

But we got back on our feet and made it to the finish line!

MSwalk09-nahleenfinishHere’s Nahleen at the finish line getting her Medallion of Walkery! 

Exhausting yet inspiring. Thank you to everyone who participated in some way. And congratulations to those who walked. Each foot step is bringing us closer to putting multiple sclerosis in its place, and giving hope and strength to those who live with it still.

Mini-update

I know you’re all sitting there waiting with baited breath, constantly hitting refresh to see what could possibly be added to the site next. Well golly-gee, do I have great news for you! On the About page, there is now a downloadable .PDF of my resume. Oh, you lucky dogs!

You think that’s all? No, no. Keen observers might also notice that my newest headshots have been added as well. They are currently the first thing you see when you go to the Photo Gallery. Now there’s no need to play it cool. We all know you want to click over and check them out faster than the internet can carry you. Well you go right ahead. There’s no judging here. You can stair at my amazing headshots to your heart’s content.

A bit of sad news as well. The Sanger Talent Agency is discontinuing their representation of actors, which unfortunately includes me. Over the Winter, you might have heard about the Writer’s Strike. As you can see, Hollywood is still feeling the repercussions of that. I always felt really fortunate to be represented by Karl Sanger. When talking to others about my plans for the work I’ll be posting here, I’ve recently been mentioning the excitement of independence and creative freedom. I think someone somewhere took me a little too literally. That’s OK, though. I’m eager to see where it takes me.

A bit of good news, too. As an addendum to the MS Walk post, Nahleen and Kelly both won the Most Spirited Award for their team! The National MS Society‘s blurb:

Most Spirited Team: teamMS –GLA
When the Chapter asked Kelly Garver and Nahleen Blake to lead the teamMS team they enthusiastically agreed to take on the challenge. They brought together individual walkers to create a team that was a force to be reckoned with in their first year. They welcomed any and all who wanted the great experience of being on a team. The 25 members showed incredible spirit and have already raised more than $15,000. Thank you!

They got trophies and everything!

Greater LA MS Walk 2008

On Sunday, April 6th, I participated in this year’s Greater Los Angeles MS Walk. Held by the National MS Society, the 5k walk helps to raise money to battle multiple sclerosis.

My wife Nahleen Blake was diagnosed with MS in 2002. This year she was invited by the National MS Society to co-captain their new team for the walk. The TeamMS – Greater LA gives people a team to join if they are participating in the Walk and want to be on a team but don’t have one. Soon the team had 25 members, including myself and former fellow Foe Pa‘ers Zena Leigh and Aaron Lyons. Together, we raised over $15,000. And money is still coming in. (4/21 Generosity update: Our total is now over $16,500!) That money will go to help find a cure for multiple sclerosis. It will also go to finding better treatment for people living with MS, including programs and events that help make the day-to-day struggles easier.

If you’d like to donate, it’s not too late. Donations for our efforts in the MS Walk will be accepted until May 23, 2008. Click here to donate.

Fellow walker Rose Kwasnicki took some great pictures of our walk. (Thank you, Rose!) Click through for the pictures along with my commentary. (more…)