Thursday, March 5, 2009

The Many Faces of MS

It has been quite the week but I am excited to report that I am officially done with my first steroid treatment. I had high hopes to complete my Part II of February 2009 but I’ll need to delay it by a day or two – so I apologize in advance…but I still would like to make a blog entry tonight, it just won’t be all about me.

And honestly, this is exactly what I need. It has been therapeutic to write about my experience, my current health…to be able to put all of my thoughts down on paper has been an incredible experience, encompassing every kind of possible emotion.

My first note to you all, I mentioned that it has always been very hard to talk about myself and I’ve had to challenge myself to step outside of this comfort zone to be able to communicate about my journey.

But if talking about me has been a difficult change, asking to be sponsored in the MS Walk has been excruciating. I really can’t pinpoint why, either. I’m not sure if it is independent streak that is uncomfortable with the concept of asking others to help me; I mean, we all got problems…maybe mine is a little more unique and challenging but this isn’t a contest – this is life. Or maybe it’s because asking for your help to sponsor me, to read my story, to spread the word…well - that seals it: I got MS. This isn’t a dream, this isn’t a school project…there is no waking up tomorrow and not taking my daily shot and there isn’t a final exam that will mark the end of the semester.

But what I want to communicate to you tonight isn’t that I’m into inflicting pain or mental trauma onto myself – I don’t write, educate and raise money for MS because of me. I do it for all of us.

2.5 million and the millions and millions of friends and families - such as yourselves – who have friends, sons, daughters, cousins, husbands…the list goes on – that are affected by this disease every day.

So, in the spirit of MS “Awareness” Week, I’d like to share with you a few videos about MS. There are millions out there but I picked out four that resonated with me; which I hope will explain my passion to rid the world of this disease (and I apologize in advance for not figuring out how to get the hyperlinks to work, but please do check them out when you have a moment...)


MS 101

“Saboteur”

http://www.youtube.com/watch?v=WJFa8uJqOUU&feature=related

This one minute commercial almost has a Lost-esque feel to it but it will all come together at the end – be sure to pay close attention…


“Join the MS Movement”

http://www.youtube.com/watch?v=UIBbgWabzUw&feature=related

What I enjoy most about this video, created by the National MS Society, is how it shows a wide variety of individuals with MS…young, old, female, male, fathers, mothers – and has some medical professionals that share a lot of good information on the disease.


Personal Stories

“Tricia’s Story”

http://www.youtube.com/watch?v=Cy004eeHTLw&feature=related

The primary focus of this video is on Tricia Chandler, she was diagnosed with MS when she was 24 years old, a mother of a nine month old at the time. She will share with you many of the symptoms that she faces and what her dreams of the future are – which are similar to many of us with MS, especially for those of us that are parents.

“Channing”

http://www.youtube.com/watch?v=ChUgZcrcsU0

I wanted to share two personal stories and preferably I wanted the second one to be about a male, to represent someone similar to myself because one challenge of being a 32 year old male that is about to become a father of two is that…well, people would never think you have MS. I’m not the typical face. Well, neither is Channing. She is a female, but she was diagnosed when she was 17 – again, not the expected face of MS. Her story has other parallels to mine, she also has taken steroids for treatment and if you look close enough you’ll see her use the Auto Injector to give herself a shot of Copaxone. Mixed in with the story on Channing (done by a local TV station), is a very informational chalkboard.


My MS Walk Team

http://main.nationalmssociety.org/goto/comfortablynumb

Wednesday, March 4, 2009

My NBA Debut & More

I’ll return with Part II of my current health and treatment tomorrow night but tonight I wanted to share some fun news and talk about our MS Walk team name.

MS Night at the Spurs

Friday night, March 6th, the MS Society invited me to attend the San Antonio Spurs game, as an MS Ambassador. I’m not 100% positive why I was chosen to be an Ambassador but I suspect it is because my MS Walk team is currently in the Top 10 for donations raised for the MS Walk on Saturday…so this recognition, I owe to EACH ONE OF YOU!

The Spurs, 4-time NBA Champions (3 times since we moved to Texas …cough, cough) - as fate would have it - will be playing the Washington Wizards. At halftime, Angela and I will be invited onto the court (with the other Ambassadors and significant others) and at that time, the Spurs will display our MS Awareness Logo on the scoreboard and broadcast a 20-second announcement to bring awareness to the disease. Everyone will then be asked to stand or sit still for 30 seconds, to convey the message “MS stops people from moving”. We will also be provided with MS Awareness Week t-shirts to wear during the half-time ceremony.

Why Comfortably Numb?

Some of you asked about our team name, Comfortably Numb. I’ve always been a big fan of is Pink Floyd – in fact, for our anniversary in October, Angela got us tickets to a Pink Floyd concert…conducted by the San Antonio symphony!

http://www.sasymphony.org/index3.php?eventIdD=41

Typically, I’m partial to the less commercial/mainstream songs of any band, but most of Comfortably Numb’s words – one of Pink Floyd’s most famous songs - really hit home:

Now I got that feeling once again.
I can’t explain, you would not understand.
This is not how I am.
I have become comfortably numb.


I think it is pretty self-explanatory why this part of the song speaks to me. And then, at the start of the second part of the song:

Ok.
Just a little pinprick. [ping]
There’ll be no more --aaaaaahhhhh!
But you may feel a little sick.


This verse speaks to me each night I take my daily injection. Each and every night. For those of you unfamiliar with Pink Floyd or this song, here is a link:

http://www.youtube.com/watch?v=sTFX0nxpo7Y&feature=related

(FYI – if you’d prefer, fast forward to just about 1 minute and 38 seconds and then at the 2:24 mark of the song…)

There was no correlation to multiple sclerosis when the song was written but, Michael Kamen, who did the orchestral arrangements for Comfortably Numb (and the album it was released with, “The Wall”) was, later in his life, diagnosed with multiple sclerosis.

There’s nothing comfortable about living with multiple sclerosis, far from it. But, I’ve said it before and I’ll say it again – this is my life now and I’m not running away from anything – and staying active, living healthy and most of all, staying in good spirits about my situation, will go a long way to aid my fight.

Tuesday, March 3, 2009

What The February?!?

I will pick up with our trip to The Mayo Clinic in another post but first I want to give you all an update on my health and current treatments, starting with Part 1 tonight.

Not sure what it is about the month of February and how my body responds to MS. As I mentioned in my previous blog, February 2008 was the month that triggered my visit to The Mayo Clinic and ultimately my MS diagnosis. February 2009 worked pretty hard to be just as eventful.

I’ve discussed the tingling and numbness that I often get in my fingers and toes; that’s the only places I got it before I flew up to Mayo last year. I remember my neurologist in Minnesota asking me if I’ve ever gotten the tingling in other parts of my body and at the time, I was fortunate to answer no. Although I was responding to a medical query, it reminded me that with MS to be careful what you wish for and never, ever…ever….take anything for granted. Not long after I answered in the negative with my doctor, I was at the airport with Angela heading back to Texas, standing in line at the airport to get a newspaper and as I took a step forward and placed some weight on my right leg I felt the tingling and numbness that had previously stopped at my toes extend itself all of the way up my right leg. And there it was. It’s been described as “heavy leg” - I guess that’s a pretty good description. It really is hard to speak to exactly but there is tingling, numbness and the feeling of a brace, or something wrapped around my leg, all at once. There wasn’t any pain associated, at the time…just the initial shock and then, like everything else, you make the necessary adjustments. If you know me pretty well, maybe you noticed a difference in how I walk, but probably not. After getting back from the Mayo the tingling spread to other areas, most notably my face. My experience of face tingling brought back some memories from when I was much younger....

Through Rain, Sleet or Snow…but Hold the Spiders

When I was younger, my first job was delivering The Washington Post around my neighborhood in Springfield, Virginia. It was no treat to wake up at the crack of dawn, walk down to the corner of my street, organize the day’s paper (back in the day, when kids were actually paperboys, we’d manually have to add the specific day’s insert – for example, the Real Estate section…not sure how this is done now but this is why Mondays were the best for a paperboy, generally there are no inserts on Monday and of course, personally, I’d be one of the first each Monday to read the summary of the Redskins game from the previous day, which I always thought made me semi-special for some reason; remember this was before the internet, this was the days of calling “The George Michael Sports Machine” and cycling through 10 options to find out whether the Washington Capitals had won the night before) and then off on my route to deliver the day’s paper. On weekends, with the Sunday paper, my Dad would help out sometimes, carrying me around in our glorious wood-paneled wagon from street to street. But, mostly, it was me against the environment. The Winter would often stretch far into March or even April (which, as many can attest to now in the Springfield area), so being awake and outside at 5 a.m. isn’t so charming. My first few mornings out there delivering the paper, I’m pretty sure I was asking myself if I was crazy signing up for this gig. My brothers had done it, so it seemed like a natural progression for me to follow in their footsteps but it got my mornings off to quite the buzzkill. Until, of course, the first time I went on “Collections” – that is, walked from house to house to collect the monthly payment of the homeowner’s. I still remember the first house I went to “collect” on – my brother Mark went with me to show me the ropes – and I felt kind of bad knocking on somebody’s door to bother them and ask for money. But to my surprise they answered the door with huge smiles and pleasant conversation and in the end they handed me my check before I could even ask for it. Walking away from the house I pointed out to my brother that they paid too much and he corrected me, “Monkey Boy, that’s your tip, you keep it”…I was starting to become a fan of this work thing!! The enjoyable banter and warm smiles weren’t always the case, that’s to be sure, but it was a fantastic growing experience….work hard = $$$ - and get this…work harder = more $$$! I was hooked and I’ve always held some sort of employment since then: cleaners, Chinese restaurant, video store, two College Internships and then onto the professional world after College.

Looking back on being a paper boy, as bad as the cold weather was, it was never the worst part. It was close…but for me – and now remember, this was also back in the day when your paper would be delivered at your doorstep…not your drive way, not somewhere in your yard, your neighbors yard – it was your doorstep, that was Option 1; Option 2 was receiving a complaint form and no paperboy wanted to ever see one of those forms – well, the worst was always encountering the unseen spider web - right in the face. I know this sounds silly but, although a temperature less than 70 gives Angela and me a chill now, growing up in D.C. you are used to and expect the bitter winter. I think that helps explain why the unexpected spider web trumped the expected weather conditions. And it would always happen on the final leg as my excitement of almost being complete would be tempered with a face full of cob web. I never got used to the experience…I delivered papers for a few years, but every time it happened was just as terrible as the first time. After the initial shock, my normal reaction would be to frantically use my left hand to clear the cob web as I ran to the next home. Sometimes, if Spidey worked hard enough on his creation, I’d feel like it was still lingering on my face minutes, or even hours later.

Fast forward twenty years and MS is helping me relieve my youth. Like everything else, it will happen at any moment and last for a few seconds, minutes or more. The first time my face started tingling, I truly did think I had walked through a cobweb again and I was having flashbacks to my paperboy days. I can’t remember how long I spent, using my left hand, to clear something that didn’t exist away but I know eventually I got myself in front of a mirror …and there was my conclusion – I wasn’t wearing my fashionably underrated paperboy carrier and more importantly, there certainly weren’t any cobwebs to clear away. So that’s what I named it when I tell Angela about it; Cobweb Face (CF), because that’s the best way of describing it, essay explanation above notwithstanding. CF is the standard but other times it might be some facial tightening, which may or may not be related to numbness, but usually it is just the CF, and I pray that is how it remains. So, the bad news is I get random bouts of Cobweb Face but the good news is it always reminds me of being a paper boy – and that’s just fine with me.

Not everything is so fine with me. Last year, leg pain was pretty irregular. It would occur but not a whole lot and nothing that would completely hinder my mobility – and generally, it is confined to my left leg. As 2008 turned to Fall, the pain and uncomfortablemess steadily began to increase. I remember spending Thanksgiving at my parents and for the first time I gave in to Angela and let her wrap an ice pack around my left leg (well, at the time, it was frozen peas wrapped in a towel! But you get the point…) and it felt better. I can’t say it necessarily got rid of the pain but it did numb it, froze it, if you will. As the weeks went by, the ice pack (an actual one now) started to be used more regularly to offset my ailments.
Generally, it’s not just one thing, more of a combination. And it’s hard to accurately describe; part author error, part MS mystery. First, my left leg will feel wooden a lot…again, bear with me on the descriptions, but this is my mind on paper…I read a lot about how people with MS get “heavy limbs” and that makes sense but I also just feel like I’m not even walking on my leg, rather a hollow version of it. The pain now is constant. What was every once in awhile, to once a week or so progressed to daily by February. I can never keep my legs in one position for a long time, particularly, my left leg. This adds some excitement to two hour meetings at work, sleeping at night, or even just going out to lunch with my family. It still hasn’t hindered my walking but it has increased the difficulty of going up stairs and how quickly I move around. Extending my legs out, constantly stretching, putting my feet up – these have all become my daily solutions. It helps, at least for a 15 minute clip, and I’m a big fan of anything that works.

Standing Still in Santa Fe

Standing in one place has become my Kryptonite. The first time I really experienced this was last Summer, July 4th weekend. After going to The Mayo Clinic, Angela and I decided to take a few days to ourselves, somewhere far and away from doctors, hospitals and needles. We originally wanted to return to South Beach, as we had discussed in January, but we needed a location with a “lower profile”; so we settled on Santa Fe. We have many beautiful memories of our trip to Santa Fe, but it started with a bump in the road. Relative to Reagan or Dulles Airport, we’ve grown quite fond of flying through checking in at the airport in San Antonio. Maybe it was July 4th weekend, or maybe it was the American public realizing this would be there last vacation before Lehman Brothers collapsed and hysteria ensued, but Angela and I were treated to a very long wait to get through security. Standing in line wasn’t comfortable, but really, who does enjoy standing in line for extended periods of time? It was the next day, that MS reminded me of who is boss. I woke up the next morning and could barely move; I felt like all of my bones were sore, not just my legs. In addition to the soreness, my body was stiff all over. We’d originally had planned to go for a hike that first full day we were in New Mexico, but that was not to be. Instead, I again gave in to Angela’s recommendation and got my first massage. I can’t say it’s a card I’m excited to play a lot, but to be truthful, I felt like a million bucks when the massage was over.

"Coming Up…"

MS Awareness Week continues tomorrow…where I’ll elaborate on my new work schedule and the steroid treatment I am currently taking.

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