multiple sclerosis

Caturday: Shed Kitteh Edition

Meanwhile, in other corners of the internet this week:

Nahleen.com shares the journey of life with chronic health challenges

Uh oh. The blogging bug has spread to my wife. Our cat might be next.

Yes, Nahleen has started blogging at Nahleen.com, where she’s writing about her experiences living with multiple sclerosis and lupus. Emphasis on living and trying to live better.

What’s amazing about this for me is that I’m learning new things about what she’s going through or gaining a deeper understanding, even though we talk a lot about it and even though I see her go through it every day. I guess that’s why we humans developed different ways to express ourselves.

Anyway, I hope you’ll stop by Nahleen.com, subscribe, and share it with your friends if one or more posts resonate with you. I’m sure she’d love to hear from you.

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.

World MS Day

Today, May 26, 2010, is World MS Day.

Spread the word. Awareness is a powerful weapon against this disease.

I was hoping to have a video from my day walking in a dress and heels at this year’s WalkMS, but unfortunately it just wasn’t in the cards. But you can still check out pictures here.

Also, it’s not too late to donate to help raise money for the National MS Society. Every little bit counts!

[Updated the date. March, May. Same thing.]

WalkMS – In a Dress and Heels – Yes, really!


Walking

Originally uploaded by Corey Blake

On April 18, 2010, it really happened. I walked the entire 3.2-mile WalkMS in a dress and high heels. To be honest, I wasn’t sure I could walk the whole way with the shoes, and seriously considered taking them off a couple of times. But I knew that at the end of the Walk, I can take the shoes off and the discomfort would eventually go away. My wife, and everyone else with multiple sclerosis, doesn’t have that luxury. So I just kept walking. One step at a time.

Thank you so much for everyone who sponsored me – your donation is helping to make the National MS Society an even better resource for people with multiple sclerosis. Thank you very much for everyone who walked with me on our team – I’m glad you didn’t mind going so slow. Thank you to everyone who has enthusiastically responded to this whole thing – every message I received really inspired and touched me. Thank you to Lan Yin “Eiko” Tsai for inspiring the look of my ensemble. And most of all, thank you to my wife for encouraging me and understanding the very serious ‘why’ behind this silliness.

(And… Psssst! If you would still like to donate, it’s not too late! We’re able to accept donations until June 1.)

Click on the Flickr set on the right to check out all of the pictures.

Photos by Rose Kwasnicki, Nahleen Blake and Michelle Hazan (and a few by me).