Coming Soon! True Champions video story

I recently had the pleasure, no wait…make that honor, of working with one of the fab crews over at HealthiNation, an online health video network. The team is producing a bunch of video feature stories, including some about MSers, as part of their “True Champions” series. The videos highlight folks advocating awareness of specific health conditions.

A producer, camera operator and sound tech hung out with us in sunny San Diego to shoot interviews, capture Team Luca riding and enjoying life in our neighborhood. Essentially, the whole point of the matter was to reflect that I am able to live a full life, one that is not defined by Multiple Sclerosis.

What an amazing experience! First, the crew was incredible and so very professional and mindful. My new pals were considerate of my energy, comfort and time as we created the material, frequently checking in with me to see if I needed water or just a break. And while I did wake up that morning battling fatigue, I informed the crew that I was okay because, as I shamelessly pointed out, “I’m on drugs. No, wait, as prescribed by my doctor. For fatigue, it’s nothing to worry about...I’m just a little amped up”. Yes, needless to say, I was pretty excited about participating in this project.

The day consisted of interviews and shots that highlighted my diagnosis, life with MS and My MS Manifesto. I tried to give Dr. Julie some serious cred here, as she is my inspiration, but found myself mispronouncing her last name. Nonetheless, we talked about the list of things I hope to do while living with MS, including laughing-laughing-laughing, jumping off the Stratosphere, riding my bicycle and working to lift up the MS community.

Now, I don’t want to give too much away because the video won’t be released until January but I will say it was a blast! At some point the camera operator was hanging out of the car window, armed with his camera, shooting Team Luca riding, yelling “Yeah! This is awesome!” So, stay tuned my friends.

Team Luca! Photo courtesy of HealthiNation

Oh, and the bonus? Even though I was battling fatigue all-day and endured some pain my leg, I got the chance to ride my bike. Yet another reminder that, when I ride, I am full of joy and bliss and forget that I am a person living with MS, if even for a few moments.

Best always,

Christie

Tysabri Infusion #21 (yawn)

The other day I had my twenty-first infusion of Tysabri and it was, again, another infusion without incident. The most exciting thing that happened for this 2-hour stay was the music played by all of the machines, beeping to let the staff know someone’s time with their drip was up. Beep, beep, beep. Beep, beep, beep.

Infusion without incident? Fine with me!

These monthly rounds are really getting boring and this is fine with me. I’m not looking for a ton of excitement when I’m hanging out in the infusion room, as the big T travels through my veins. It’s a standard, dull routine for me. Insert needle, Tysabri flows, I read a book, I dose off. Beep, beep, beep. Hour one is done. My nurse unhooks the bag, I read a book, I dose off. Beep, beep, beep. Hour two is done. I’m released and head home. Infusion without incident is the way it should flow, with no side effects or unbearable reactions.

The most exciting thing about my treatment thus far is the reason why I signed up for Tysabri in the first place– no new activity revealed on my last MRI, no relapses. Bam!

So, let the T flow. No excitement in the infusion room and no excitement on my MRI results? Perfectly fine with me.

Ciao for now.

Christie

Wordless Wednesday - Worrying

So, so true! I needed this reminder these last few weeks as I worried about some stuff. It took a while but I finally came to realize that worrying really stopped me from enjoying the good.

Take Care (Guest Post by Dan Digmann)

Note from The Lesion Journals: today's guest post comes from Dan Digmann. You can find Dan and his wife, Jennifer, over at http://danandjenniferdigmann.com to read their stories of how they have taken on MS, together.

"Take Care" by Dan Digmann

Mainstream news reports covering recent medical journal findings often make my wife, Jennifer, and me feel helpless.

Who can blame us?

We’re a married couple. We both have Multiple Sclerosis (mine is relapsing-remitting; Jennifer’s is secondary-progressive). One of us is in a wheelchair. Oh yeah, and we each serve as the primary caregiver for the other.

So when ABC Nightly News with Diane Sawyer reported earlier this year that recent research showed the key to good health and reducing the risk of heart disease is walking each day, we actually wrote the network to ask what they suggested a person in a wheelchair should do.

We’re still waiting to hear back.

We’ve been well aware of studies linking the stress of caregiving for a chronically ill family member to increased mortality rates ever since we got married on Sept. 10, 2005. Perhaps our wedding vows would have been better stated with, “In sickness and, uh, in sickness.” 

But the MS couldn’t deter us from getting married. After all, we met at a National MS Society event and knew what we were getting into with this stupid disease we share.

Needless to say, we still are beside ourselves with what Medical News Today reported in the middle of October. According to its story Family caregiving linked to longer life expectancy, “A new US study led by Johns Hopkins researchers contradicts long-standing beliefs that the stress of caregiving leads to early death and instead shows that family caregivers live around 9 months longer than non-caregivers.”

Imagine that: encouraging words from a mainstream news report on research findings! The story indicates that the results are available online in the current issue of American Journal of Epidemiology, and it in part states that, “… many of the caregivers reported increased self-esteem and receiving gratitude and recognition from the family members they cared for.”

Seems to make sense, doesn’t it? So often when it comes to MS, people focus on the needs for things like medications, adaptive equipment or programs to help the person living with the disease improve his or her quality of life. It is interesting to note, then, that something as simple as showing gratitude and recognition can have such a positive impact on improving the quality of life for the MS caregiver

There is further information in the Medical News Today story that points out the study doesn’t necessarily paint a complete picture of the entire caregiving process and that further research is needed. But it’s worth repeating that the research itself  “… shows that family caregivers live around 9 months longer than non-caregivers.”

Imagine if the key to increased longevity is as simple as caring and showing gratitude. What an easy way to improve everyone’s quality of life.

Dan

For more inspiring essays from the Digmans,
check out their book. A part of the proceeds
goes towards the Nat'l MS Society.
http://danandjenniferdigmann.com

Thanks for stopping by Dan and cheers to you and Jennifer. Happy Holidays!

Break Barriers, Open Doors - Top 5 ways to observe IDPD2013

Did you know that about 15% of the world’s population lives with some kind of disability? Whoa. That means more than 1 billion people are facing all kinds of barriers: physical, social, economic and attitudinal. According to the UN, we are disproportionately represented among the world’s poorest and lack equal access to basic resources in education, employment, healthcare, social and legal situations. Yet, we have remained largely invisible. Crazy, right?

As a person born with some loss of hearing, I’ve always tried to be an equal participant in the world as I believe I can do anything that a person with full hearing can do. As you might guess, not hearing everything can be limiting and, coupled with a recent diagnosis of Multiple Sclerosis, I have needed and have asked for additional resources to keep working, to keep playing, to keep living the life I want to live. In my little world, I try to break down the barriers as best I can.

At home, I added Closed Captioning to the TV set so I can get every word uttered during the latest episode of Modern Family (this turns out to be funnier than intended because sometimes those folks typing out the actor’s lines really get it wrong). At work, I’ve asked for small but mighty powerful tools to help me do my job effectively. After all, it is very important be on an equal playing field with my colleagues. At play, I’ve added things to my bicycle to help see well. This is especially important because I totally love to ride my bicycle as fast as possible and I don’t want a case of flaring optic neuritis to get in my way!

These are just a few examples and upon realizing that the world is embarking on another International Day of Persons with Disabilities (IDPD) on December 3, 2013, I thought to broaden and expand this list of breaking barriers and share my Top 5 ways to observe this important day.

As you read the list, I invite you to think about these key words today, featured on the UN website, as we continue to break barriers and open doors: include, organize, celebrate and take action.

Top 5 ways to observe IDPD2013:

• Consider using different language. When communicating, try to put the person first, not their disability. Use “person with disability” not “disabled person”, in your conversations. This slight change focuses on a person’s individuality and empowers. For more positive phrases, check out the ODEP website.
• Stand up! In the United States, we who live with some kind of disability do have rights, especially in the workplace (hence, “reasonable accommodation”) and it’s important to ask for the tools needed to be effective. Through my employer, I was able to get a Pocket Talker to help hear better during large meetings and other goodies that have made a huge difference.
• Strengthen your independence. Reach out to local and state agencies, such as the Department of Rehabilitation, for assistance. I was able to get a really groovy alarm clock that shakes my bed awake with a buzzer that I place in my mattress. It’s so cool.
• Celebrate! If you know someone who has made a contribution in breaking down barriers and opening doors, let’s celebrate them!
• Chat about this important day. Send tweets, update your Facebook page or take a photo to share on Instagram. Use the following hashtags #IDPD2013, #thisability, and #IDPD on your pages and status updates. For example, you could send a tweet as follows: “I'm supporting this year's International Day of Persons with Disabilities #thisability #IDPD.

So, as we clink glasses to commemorate another IDPD, let’s strive for ways to focus on the inclusion of disability in all aspects of our lives, on the basis of human equality.

Cheers!

P.S. check out this rad stamp of Chuck Close! The United Nations General Assembly (UNPA) selected artists with incredible stories that “…highlight the positive power of full and equal participation of peoples with disabilities.” 

Celebrating an incredible story!

Sources:

United Nations website: http://www.un.org/disabilities/default.asp?id=1607

United States Department of Labor, ODEP (Office of Disability Employment Policy): http://www.dol.gov/odep/pubs/fact/comucate.htm

My MS Manifesto...

A couple of weeks ago I did something I’ve always wanted to do: I finally jumped off the Stratosphere in Las Vegas. Yep, you read that right. I fell 855ft off the tallest observation tower in the world*.

Just moments before the big jump!

You might be wondering, “Why on earth would she do that?” “Well, why not?” is my first reaction to this question but it goes deeper than this. Now that I am in my 40s and live with Multiple Sclerosis, I want to be in charge of my life and this includes doing stuff that I’ve always wanted to do. Ultimately, it’s all about how I react to the diagnosis and trying really, really hard not to let MS give the orders.

I know, I know. I realize that jumping off a very, very tall building isn’t quite leading the charge of my MS life yet, for me, it is an act of knocking down the disease a bit. I try to do everything in my power to not let my diagnosis get in the way of doing the things I love and/or signing up for some pretty fun adventures.

 

In response to the words I heard from my neuro in 2010, “You have MS”, I created “My MS Manifesto”, my personal declaration to guide me through my life with MS. The idea comes from Dr. Julie Stachowiak, PhD and her book, “Multiple Sclerosis Manifesto: action to take, principles to live by”. I became wildly inspired after reading this and I created my own manifesto, things I want to do to get through this.

My MS Manifesto is a mixture of adventures, actions and hope. It’s a work in progress, constantly evolving because I don’t always know where life will lead. My journey with Multiple Sclerosis is not something I signed up for but now that I’m on this road, I want to, as Dr. Julie writes, “…make the hard parts easier and the good parts last longer.” This is how I will get through my life with Multiple Sclerosis.

I will…

• Laugh, laugh, laugh! It really is the best medicine
• Listen to my body. It often tells me when to rest so I should nap as often as needed
• Ride my bicycle. In fact, now that I’ve done 15 miles and 30 miles in the annual Bike MS Bay to Bay event, I want to put more miles on my bike. I will try 100 miles for Team Luca’s 3^rd annual ride
• Ask for help when I need it. This is difficult because I want to be independent yet sometimes having someone pitch in makes all the difference in the world
• Jump off the Stratosphere in Las Vegas!
• Move my body. No matter how moderately. Exercise is an important element in being well with MS
• Trek to Mt. Everest base camp. The only thing to decide? Climb the north side or the south side?
• Regularly visit my hilarious and extremely well trained neurologist
• Stay informed about the latest treatments. I will do this by doing copious amounts of research and asking a lot of questions. Right now I am very intimate with Tysabri (DMD) and Gabapentin for nerve pain. Essentially, I want to take the reins in making health decisions.
• Help lift up our MS community by continuing to share stories and supporting my peeps, whether they are newly diagnosed or have been living with MS for a while. This is important to me because I do not want anyone living with this serious disease to feel alone. We’re all in this together.
• Keep a symptom journal. I’ll do this by jotting down my symptoms in my document “Weird sensations that are bugging me right now”. While I believe keeping track of my symptoms is critical, I am notorious for “getting to it later.”

How about you? Do you have a manifesto? If not, don’t delay ‘cause you never know what tomorrow brings. Think about what you want to do and should do to get through life with MS and begin your manifesto. And, have you read Dr. Julie’s book yet? If not, I urge you to do so, like today!

Take care,

Christie

*I haven't fact checked this stat but it certainly seemed like the tallest observation tower in the world! 

Why I Ride

I ride because when I propel myself down the bike path I am full of joy and bliss and forget that I am a person living with Multiple Sclerosis, if even for a few moments. 
(click here to read more about my story on multiple sclerosis.net)

Team Luca prevails, orange tutus and all

Team Luca makes the news in the fight against MS

We did it! 6 riders, 6 sock monkeys, 5 orange tutus (one of our cyclists was shy), several wrong turns, one TV interview, one minor fall and we did it! Team Luca finished the MS Bike Bay to Bay Tour and raised over $3,600! Not too shabby for a team of six.

Check out the video below to see a great recap by Dominic Garcia, reporter for cbs8, of this ever so important event. You just might see someone you know! Just look for the orange tutus.  

San Diego, California News Station - KFMB Channel 8 - cbs8.com

Team Luca was thrilled to be part of such an effort and we wear our medals proudly. But, it doesn't stop here. We all must continue to raise awareness, money and support in our fight against MS.

For the full story on cbs8, click here.

P.S. stay tuned for additional updates from Team Luca. Rumor has it one of their teammates is jumping off the Stratosphere in Las Vegas! Weeeeee!

Flo Fox, one of my MS heroes

Have you seen this short documentary yet? It's awesome. Living with Multiple Sclerosis since age 30, Flo Fox never let it stop her from doing what she loves most: taking photographs. Please take a moment to watch the clip, you'll be glad you did. And Flo? Thanks for being such an incredible hero for me. Hugs!

http://nyti.ms/1eFAB58

Stop smoking and get some Vitamin D, a theme from ECTRIMS

The sun vitamin has an impact
on the course of our MS
(c) cgermans photography, 2013

One of the three themes discussed during this year’s ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) was the “Environmental Triggers” of Multiple Sclerosis. Not surprising, more studies reveal that Vitamin D has an impact on disease course and smoking is really bad for our health, more so for our MS health.

Geez. This makes me wonder, “Good Grief!  Did I get MS because I was addicted to cigarettes for ten years?” Good thing I quite my habit of a pack a day of Marlboro Lights. And, while I am not necessarily getting more sun, I did start taking a daily dose of Vitamin D supplements. Hopefully this gets me on track to lessen the impact of my MS.

So, have a watch of this video, which features three prominent doctors in neurology. Dr. Lublin, Dr. Fox and Dr Wilner discuss the top advances in MS and the most interesting ECTRIMS presentations. You'll have to sign up on Medscape.com to watch the flick but it’s a good update on the chatter of this year’s event. 

Click here to watch the video: Top Advances in MS highlighted from ECTRMIS 2013.

Best always,

Christie

Sources:

Ascherio A, Munger K, White R, et al. Vitamin D as a predictor of multiple sclerosis activity and progression. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 96.

Hedström AK, Hillert J, Olsson T, Alfredsson L. Smoking and multiple sclerosis susceptibility. Program and abstracts of the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 2-5, 2013; Copenhagen, Denmark. Abstract 118.