Tuesday, August 12, 2008

This is a long one, but worth it :)

Alright, so this is a major update in a few ways. One, because I haven’t updated in a while and two, because some pretty cool things have been happening recently. I will go in chronological order since my last update.

LA Bike Marathon (March 2, 2008)

This was such an incredible experience. My heart swells each time I think about it. Having so many people come out and ride and support me was incredible (22 riders, about 10 others cheering us on, including my mom and dad, who had to walk probably 5 miles chasing us around!). Thank you so much Anthony for proposing the idea and helping take charge of organizing everything! Thank you also Ivette for helping organize everything and the Flores family for the hand-cycle!

The final roster:

Alex Mollazadeh

Anthony Lok

Bobbie Domingo

Chris Oberle

Dan Jacinto

Dave Sabo

Edmund

Gerardo Lopez

Ivette Flores

Jeff Hsu

Joe Guintu

John Vcelka

John Wu

Kathryn Kinnier

Katie Caldwell

Larry S

Lawrence Ham

Lawrence Schlosser

Matt Dickey

Peter Papaioannou

Sandy Ding

TJ Roper

We all had bright orange Team Help Joe Walk t-shirts and were very much noticed by other people along the ride. ABC also hitched a camera on my bike to get footage for their story (more on this later)! I want to thank my team sooo much for enduring the bike marathon with me and pushing me along the way. Two of the most memorable moments I will take with me forever were:

1) Climbing a steep hill and my team cheering me on because it was super steep and tough. As my team started cheering, other people around us started cheering until there was a crowd chant of “Go Joe, go!” That pushed me even harder to use my arms that were at that point turning to spaghetti.

2) Approaching the finish line, achieving our goal of completing the race in less than 2 hours as a team with people lined up on both sides of the street cheering us on.

Not only did we have a great time, complete the race and earn our medals (everyone who finishes gets one), the team was able to raise an incredible amount of money! The team raised over $10,000!!! All of this went directly to medical expenses, including therapy (at Project Walk and Next Step Fitness—more on this later), hospital bills, recurring medicine and supplies and co-pays, among other things. Not only were we able to fundraise, we had some very, very generous sponsors.

Mechanix: http://www.mechanix.com/

Chivas Skin Care: http://www.chivasskincare.com/

Burning Sands Apparel: http://profile.myspace.com/index.cfm?fuseaction=user.viewprofile&friendID=47389776

Surfer’s Myelopathy Foundation (Non-profit under way. Website not yet functional, but check back often.): http://smawareness.org


Team t-shirts!



Getting ready...


Team getting ready...

And go! The racers are on their way...


Go Chaminade (we even have the colors)!!!

Our team!


ABC interview (March 12)

So, my 1 year anniversary was spent going to therapy and getting interviewed by ABC for a Primetime special (medical mysteries) that is actually airing tonight (8/12/08). They were so great, nice, sensitive and receptive to my story. After telling my story over and over, sometimes I forget the severity of it and impact as it becomes redundant to me. However, every now and then, I get a flash and sense of how dramatic, drastic, catastrophic and unfortunate my situation is. I don’t like those days! But this day, the one year anniversary, it really hit me again, and everyone around me from Ivette to my parents and the rest of my family to my friends to the ABC crew—everyone was sensitive and supportive. Thank you so much for a great experience and helping me achieve my goal from day 1 of having this injury—getting as much information out there and educating people on this bizarre injury to hopefully prevent/treat it in the future. This is what Surfer’s Myelopathy Foundation also embraces and I am so grateful that they have taken on this endeavor as well.


David Muir, the interviewer...


The crew and producer (Christine)


The stars of the show...

HBO (March 10, 2008)

HBO stands for the Hyperbaric Oxygen Chamber that I used starting on March 10. I went 6 days per week and had a total of about 22 sessions. It was a challenging commitment, especially considering I started work the following week! After a few weeks of HBO therapy (March 20), I was able to slightly move my toes! It’s not every time and sometimes positional, but still, I had a connection with my lower body that I hadn’t had since my injury! The HBO doctor I saw said that he would have strongly recommended HBO therapy right when I was hurt. Although I was a year post-injury, the HBO treatments seemed to still have some positive effects.

THIS IS THE MY MOST RECOMMENDED COURSE OF ACTION FOR ANYONE WITH SURFER’S MYELOPATHY, ESPECIALLY DURING THE FIRST FEW DAYS.

I have seen what it can do first-hand. Also, considering the nature of the injury (vascular infarction), it makes sense to infuse oxygen into the body and open up the blood vessels to better the blood circulation. And apparently the risks are so minimal that the doctor explained that my greatest risk would be driving to and from the facility every day.

Return to work (March 17, 2008)

On St. Patrick’s Day, this Notre Dame grad decided to go and celebrate by returning to work! After over a year of not working and fully concentrating on therapy, it was time to return my life to somewhat normalcy and not let the injury rule me. Also, I needed (and still do!) the money! The transition has been bumpy and frustrating. I went from a mindset of going to therapy every day and getting better to thinking analytically every day. It has been a difficult transition as I feel I am very rusty and know how I was before and want to get back there, now! Someone told me that they just got back from a weeklong vacation and it’s so hard to get back into the work routine. Imagine a year!

Deloitte has been so flexible and accommodating throughout this whole process. Their support has been incredible. Through my times in therapy, I heard some horror stories of people who got hurt and their work situation. Deloitte really cared about me and was so open and willing to help any way they could. More on my current work life later…

Next Step Fitness (http://nextstepfitness.org/)

These are now the people responsible for helping me get better! I continued to go to Project Walk about once per week even after I started work, but this became way too cumbersome and tiring, especially after a working hard and then having to drive 100 miles each way for therapy. Luckily for me, another spinal cord injury recovery center opened up in Lawndale, which is about 30 miles from where I currently live in Pasadena. They have excellent people working there who are motivated and driven and are incredible people to do what they do and care so much about their clients. Their training is sort of a combination of what I was doing at Project Walk with the strength training for the parts of my body that had weakened due to the injury and Precision Rehab by performing Locomotor training or treadmill training. They harness me up and put me on a treadmill while they manually walk me. They are partners with the Christopher and Dana Reeve Foundation's NeuroRecovery Network. More on this later as well…

Ben Thompkins fundraising

Imagine receiving an e-mail from an old friend in high school that you haven’t talked to since graduation. A pleasant surprise, right? However, when Ben Thompkins contacted a mutual friend, Anthony, who passed the message to me, he had more of an incredible message. His new clothing company, New Civilization Clothing (http://newcivilizationclothing.com/) would donate a portion of their profits to the Help Joe Walk fund. I was floored when I heard that he would do that. Especially considering that he’s just a start-up, to allocate a portion of your profits is amazing! I wish him all the best and encourage everyone to revamp their wardrobes with New Civilization Clothes, Mechanix gloves and accessories, Chivas soap for everyday use and Burning Sands clothing for any customized clothing work you need done J And tell all your friends about Surfer’s Myelopathy and Surfer’s Myelopathy Foundation!

Flip cup tournament (August 9, 2008)

This is another demonstration of unbelievable love, care and support. Allison Conkright, my good friend’s (shoutout to Brian) sister, organized an amazing event last Saturday. It was a brilliant idea and everyone had fun! I had such a great time with all who came from friends to co-workers to new friends I made that day! She was extremely organized for the flip cup tournament, had great prizes and really has a lot of friends! We raised enough money for me to cover this month’s therapy which tops off at about $1000 per month, and then some left over to pay for other medical expenses.

New York Fundraising

Some of Ivette’s close friends (who I have now adopted as mine too) have held two fundraiser happy hours now in New York! This is so truly amazing that Courtney, Danielle, Greg, Allison, Jen and Amy put this together. Thank you so so much. Hopefully I can make it out for the next one somehow!

Ok, so all of the above stuff was nice and all, but here’s where I’m going to start “journaling”, where you get to some insights into my mind, how I’m feeling and my day-to-day life.

Diabetic guy in Pasadena

The other day, I was with Ivette and her mom on Colorado Blvd in Pasadena and we saw a raggedy guy on the side of the street begging for money. We stood right next to him as we were waiting for our crosswalk sign to change. While standing there, he asked how I was doing and I responded, “Good, how are you?” He said fine and then proceeded to ask me what happened, why I was in wheelchair, so I told him. And then he said, “Oh man, I’m sorry. I’m diabetic myself. I had to have all of my toes amputated.” I said, “I’m so sorry to hear that. I’ll pray for you.”

That interaction really got me thinking. Having been through this whole medical/insurance process, it’s not easy. I have racked up more that $500,000 in medical bills that insurance has paid for, which is awesome. It really makes you feel a little better about paying those monthly premiums. If this number surprises you, I was not so lucky in that spinal cord injuries have the infamous title of “Most Expensive Type of Injury.” In addition to this, I have racked up between $60,000 and $70,000 out of pocket expenses. Through all of the fundraising efforts, we have raised about $50,000 which blows my mind and is incredible!!! Everyone around me has really been a blessing from God and I cannot thank you enough for your support.

I have followed up with insurance for the out-of-pocket expenses many times and still am trying to get things covered, but it’s really almost like a full time job going through the appeal process, etc. I also want to add, for those of you who have donated and have not received a thank you card, I AM TRULY SORRY. It is coming soon! It is inexcusable the lag it has taken me to respond, but I really am truly thankful and grateful. Check your mailboxes soon!

Anyways, sorry about that tangent, but that just goes to show that any one of us (i.e. me), with a good job, good insurance, etc…could easily sink into an inescapable debt. But with your help, support and prayers, I have been able to offset much of the medical costs. Yes, I am still in the hole, but it’s not nearly as bad as it could be. So, to bring about my point, without the help and aid from my peers, I very well could have had a similar fate to that man—on the streets and begging. I don’t know his case or scenario, but being $60k to $70k in debt would surely be an incredible challenge.

Fundraising dilemma

This brings me to my next point. When we first started fundraising, I was VERY, VERY uneasy. I hated asking for help. Not only because of my own pride, but also because I thought it was a symbol of some sort of resignation to the injury. However, when the costs were mounting as greatly and quickly as they were, I felt like it would really be helpful. Imagine, having to ask your friends and family for money when you are a young twenty-something trying to prove yourself and you feel like you are finally gaining independence and allowing your parents to sort out their finances after putting 4 kids through college.

Anyways, I am somewhat comfortable now with the fundraising as it greatly helps me and my family and actually provides additional fuel for me to keep on fighting. However, I know some people wonder how it is $60k to $70k. I work for Deloitte and as a true accountant (although I do IT stuff mainly), I have kept a complete and itemized list of all of these expenses, receipts included!

Stem cells

Another endeavor I am exploring that I had previously 100% shut out as a possibility in the past are stem cells. I know what most of the doctors in the US say: that it is not regulated abroad and the research is still pending. I know people who have gone abroad and have talked to doctors and physical therapists who also know people who went abroad for stem cells, and I have yet to hear a success story where the person is now walking. My curiosity, however, comes in the nature of my injury in that it was a non-traumatic, vascular injury, different than most injuries. Also, they say that on the bell-curve for improvement, the majority of improvement happens in the first 2 years, and I am already 1.5 years out. This may be the window to do this procedure. However, I am FAR from making a decision as I have only begun to ask around and gather more information. I also spoke to a priest about the Catholic view and aspect of stem cells and I think with some of the developments they’ve had recently with non-embryonic cells, there is less discord. However, again, I don’t know nearly enough about stem cells to form an opinion.

Difficult daily schedule and life changes

Life is hard. Everyone can attest to that statement. But it’s just that much harder for me right now, adjusting (temporarily!) from walking and being fully functional for 24 years to doing everything without my legs. Not only is day-to-day life stressful, more time consuming and more logistical than before, it’s a physical, psychological and mental battle.

I continue to stand by my motto of “I’ll figure it out” to any situation. I can do pretty much anything I did before; some things are just a little harder now. Although I would like to think that this evil or this injury has not changed me at all, it has. I feel like I am no longer as carefree and easygoing as I used to be. I attribute this to the key word of my life that I have to figure out every day: logistics. Whereas before I could go anywhere and do anything and just figure things out, I HAVE to figure things out now, and sometimes the logistics become very complicated in the process. With the logistics, it makes it more difficult to go some places, although I still go on occasion. For example, going out to bars/clubs. I’ll go on occasion, but not really as much. Imagine going into a crowded place where you always have to play Moses. Also, when the music is loud and people are talking, it’s amazing how different having a conversation is 2 feet below everyone else’s level.

As I mentioned previously, I returned to work in March. They have been incredibly flexible and bend over backwards to help me. However, life still is difficult as I still go to therapy twice a week, which ends up being physically and mentally tiring. After an exhausting therapy session, I usually need to put in a few more hours that night or the next day to make up the time. Again, they have been as flexible as possible, but I guess it’s just the nature of the beast working and continuing intensive therapy. Man, I miss those days when I could just be normal and have a normal schedule, get off of work and then have time to myself. Now that’s broken up into therapy sessions, leaving even less time to do things I want to do or need to do (like sleep!).

Improvements!

So, as mentioned above (if you’ve made it this far!), I did have some voluntary toe movement after a number of HBO sessions! I can’t do it all the time, but still keep on trying. Also, last week on the gait trainer (treadmill), they usually manually walk me and support my hips as well to move in a correct walking motion. Last week, they were able to let go of my hips and they were self-supportive! The hip swings were in sync with the leg movements, keeping me relatively stable. A great “step” forward!

Also, last night, I was playing around with these braces my physical therapist got me that come up to just below my knees. My friend, Alejandro, was there and I put the braces on and pulled myself up with the walker. Then, on a whim, I told Alex to spot me as I tried to walk with the braces. Depending on your definition of “walk”, I walked! I had the braces on, using the walker, and was able to finagle my way a little bit around the room on two legs! It wasn’t necessarily pretty, fast or even completely functional, but I was amazed that I was able to get myself from point A to point B again on 2 legs! I need to video this and I will post a video. I think I cheated a little bit with leans, hip hikes and using my arms, but still, I was doing it!

So, that’s my update for now. Busy with work, life and getting through these challenges. It really has become a big part of my life, unfortunately, but I will not give up. I will walk. I will run. I will fly. Maybe not fly. But I can’t wait until the day I pick up a basketball and run down the court again…

9 Comments:

At August 12, 2008 at 4:29 AM , Blogger cherylvigil said...

This comment has been removed by the author.

 
At August 13, 2008 at 12:37 PM , Anonymous Anonymous said...

Hi Joe,
I love your attitude and determination. My son was in an atv accident in 2004. He is now a quadrapalegic. He was 25 at the time and had only been married 5 weeks. He has the same determination you do and knows he will one day walk again also. He used to be an over the road truck driver and would love very much to do that again. He said he would give anything to be a para instead of a quad so he could at least use his upper body. He constantly researches the stem cell surgery along with other means of excercise equipment. Hang in there, which i know you will. You will be in my prayers. Joyce

 
At August 13, 2008 at 3:06 PM , Blogger Christina Buck said...

i saw your story last night and was just astonished that such a thing could happen. last year i began my journey with a neurological problem - now diagnosed with PLS (primary lateral sclerosis - a progressive, degenerative neuromuscular disease). i lost my job, had to move home with my mom, and am losing my ability to walk, slowly. i use canes and a walker to get around. i am struggling so much with finding my way in this brand new world. take care of yourself.

 
At August 13, 2008 at 8:04 PM , Blogger Reina said...

Joe,
I remember you from Notre Dame and was a classmate of yours in Toledo, Spain, during the 2003 Spring semester. I saw your story on ABC's "Medical Mysteries" last night and was moved beyond words. In fact, I couldn't believe it was you on TV! Your strength and determination are an inspiration to us all. You have turned what many would consider a tragedy into a remarkable campaign to raise awareness for others - a selfless act in true ND spirit! I know with your tenacity and faith you will walk again! I wish you all the best. GO IRISH!
- Reina Montes, ND Class of 2004

 
At August 13, 2008 at 9:40 PM , Anonymous Anonymous said...

Hi Joe, I also watched Primetime last night mainly because my 16 yr daughter, Megan was diagnosed w/ Surfers Myelopathy last August just recently had the dreaded 1 yr anniversary but still not giving up.What I(we) would like to know is how we could get her more intense therapy we live in the central valley(Ca.)we have gone to Valley Childrens Hospital in Madera,Ca.but in April stopped for awhile but need to get back into it again,any ideas I would love to hear any advice you could give us.Also did I mention she wasn't even surfing!she was sunbathing w/her friends and was sprayed w/a waterhose and jumped up quickly...Wishing you all the best!!

 
At September 2, 2008 at 10:21 PM , Anonymous Anonymous said...

I believe...why...because I know your determination. I'm very glad to hear that you are still seeing the progress and making it work with the new schedule. I'll have to admit that I miss our workouts though. Be well...work hard Joe. P.S. I missed our special and am trying to get ahold of a copy.

 
At October 1, 2008 at 2:19 AM , Blogger Brian said...

Joe,
Thanks for the updates. That is so exciting that you "walked"!!! You'll be playing ball in no time. We'll keep you in our prayers.

 
At June 21, 2009 at 7:33 PM , Blogger Daniel said...

Hi Joe,
Calvin's roommate Daniel here, catching up on your blog after being away for over a year. Good to hear you are in great spirits and that you have such a wonderful network of friends and family. Take care, and hope to meet you one day.
Daniel

 
At May 29, 2010 at 6:46 PM , Anonymous Anonymous said...

Just want to say what a great blog you got here!
I've been around for quite a lot of time, but finally decided to show my appreciation of your work!

Thumbs up, and keep it going!

Cheers
Christian, iwspo.net

 

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