#lgmd2i

After a pretty successful first treatment I’m continuing to raise funds for myself and others to get stem cell treatments for LGMD because every child, woman, and man deserves a chance to run w the Swenson’s Boys

If you're ever leaving a doctor's appointment where you were told your body is slowly but surely destroying itself, the last thing I'd suggest is to take an afternoon drive down Santa Monica blvd through West Hollywood. Sitting in traffic surrounded by amazing physical specimens, seemingly cut out of stone-running, walking, eating awesome lunches that are surely going to somehow make them even more awesome-looking immediately after consuming-it's almost impossible to not feel like you're in your own bubble. After having to walk around the doctor’s office while a well-intentioned physician points out everything that is weakening (completely against your control) and everything that will probably get worse to you, it's tough seeing the masses go about their day doing completely normal things you never thought you'd be envious of. What they (understandably) take for granted, you’d give almost anything for. Unfortunately, probably not an uncommon feeling following conversations with a medical professional like this:

Neurologist  "I can't explain how uncommon it is for you to have this diagnosis with no previous cases in your family. Is it possible your parents were related?"

Me "Man...I know I'm from Ohio but Northeast Ohio isn't really like that"

Neurologist "...I'm from Cincinnati" 

The conversation and visit didn't get any better and the entire experience gave me plenty to think about on the drive home. 

This was a few months ago, and I don't think I've felt that level of hopelessness since. Even right now, while sitting here switching between typing and icing my ankles, I'm as convinced as ever that I can have success in combating the largely undefeated condition of Limb Girdle Muscular Dystrophy (type 2i in my case for those keeping score at home). As some reading might know, I successfully raised money to try “alternative” treatments (AKA “the only” current treatments). I’ve done physical therapy that helped a bit, I'm trying any supplements under the sun, and I’m up for the second round of a drug trial starting in October that is the first real-deal drug treatment (we hope!) for limb-girdle muscular dystrophy in the United States. I’ll follow through with my original plans of stem cell treatments, even though it might not be a long-term fix yet, after this drug trial, which is an exciting and scary thing to be a part of. We’re also not too far away from gene therapy aka CRISPR, which you should spend some time Googling because it’s incredible and everyone should be talking about it. Vice did a pretty good special about CRISPR that probably included some cussing since they’re edgy (check it out on HBONOW #ad). 

So that’s the possible good news that I try to focus on as often as possible: treatments, and even cures, are possibly/maybe on the horizon for all forms of muscular dystrophy and other genetic diseases. Giving up is not an option, and it certainly helps to think about how much better things could be in the future if a treatment or cure leads to being able to do the incredibly normal things we all miss doing.

Of course I have a master list of the first extremely normal, everyday things I will do when (NOT if!) I get well enough again:

WALK AROUND

Now thankfully I can, and do, still “walk around” but it’s not without being very careful, usually with a cane if a longer distance, and much, much slower than I’d like. I’d love to wander up a freaking storm just like I always used to. One of my favorite parts of traveling has always been just walking around new places. One of my favorite things about living in Los Angeles is you can pretty much always walk around because weather never happens. I still appreciate any walking around I do, but once I get a step or 10 back you can hopefully catch me doing a thankful strut down your block! I can’t wait to figure out what a “thankful strut” would look like.

DO WHATEVER FUNNY DANCE THE INTERNET IS REALLY INTO AT THE MOMENT: 

In late 2015 I promised people I’d do the Drake “Hotline Bling” moves down Figueroa outside LA Live whenever I’m well enough to, knowing full well that a new dance craze or 10 would take it’s place by the time I’m more able-bodied. Whether it’s Drake’s moves, Soulja Boy’s "Crank That" Superman dance, Cupid’s eponymous Shuffle, or Whipping/Nay Nay-ing. Perhaps I’ll just do them all?

HAVE “ONE TOO MANY”

Never been a big drinker, but I REALLY can’t have any amount of alcohol that could possibly compromise my already troubled balance and coordination. In fact, it’s been a few years since I’ve been able to do that. So in the event that I find myself a bit stronger, I will also hope to find myself ready to party! I’d love to tip back a few (low carb, no refined sugar) drinks, watch the big game, roughhouse with my buddies a bit, and then accidentally get in someone else’s Uber going home. 

CROUCH NEAR SOMETHING NOTEWORTHY AND TAKE A PIC OF IT:

I’ve seen quite a few guys do this on Instagram and it always looks pretty fun and cool. Could be a dog (or several), could be a Monster Energy Drink branded motor bike…I see noteworthy stuff like that very often -and I’m always chomping at the bit to crouch near it and have one of my boys take an Insta. A lot of guys throw piece signs in the pics, but I think I’d opt for shaka.

CROSS SOMEONE UP

I don’t care if it’s pretty or not…I want to play a game of pickup basketball and cross someone up. I want to feel like Allen Iverson for once in my life and this seems like the safest way to accomplish that. I want to feel like Kyrie Irving for once in my life without having to get a FRIENDS tattoo on my my forearm. Honestly, if I’m ever well enough to be decent at basketball I will GLADLY get a FRIENDS tattoo.

FIND THE GUY WHO ONCE PUSHED ME FOR TAKING TOO LONG ON THE STAIRS OF AN NYC SUBWAY STOP AND CHALLENGE HIM TO A RACE

Come to think of it, I believe he was running from police and got arrested right after so maybe I'll find a much nicer person and race them. 

PLAY LIVE MUSIC AGAIN

I retired from playing music at a tragically young age when my band broke up 10 years ago. I probably had at least 3 or 4 years of it still being "cute" and, as my mid 30s slowly approach and I now have a career I enjoy + a marriage I'm happy in, it seems like the perfect time to haphazardly throw myself back into the world of performing. If I could improve my stability and mobility, this seems like a no brainer. I don't want my wife to never know the pleasure of having to wait around for hours after a show while I explain we haven't loaded out our gear yet.

ROLLERBLADE ON THE VENICE BEACH BOARDWALK: I actually don’t really have any desire to do that, but I’d love to always know it’s an option. 

How about some pretty good news? Ill assume all my supporters on here enjoy pretty good news (and if you'd prefer some bad news, probably check out anything else online?) I thought I'd pop in and let you know that this campaign is quite funded. 

Huge thank you to all my friends and family that supported in anyway. Special shoutout to some recent extremely generous contributors that helped me reach the finish line (which is actually the starting line) I'd love to cook some really good food for all of you. I'll have to learn how to cook food that's "really good" and isn't just "decent", but for now I could at least make you some really good guacamole. The first person I talked to after reaching the goal was my grandfather, aka Grandpa Bob. He was glad to hear the news but asked why it took so long when he "saw one of those GoFundMe things on the news and they raised 40k for a wounded police dog in a day! It went viral or whatever. Why didn't yours go viral?" Well grandpa, I suspect the dog was not only cute and likable, but also a hero. I didn't need to "go viral". I know great people. Then we changed the subject to how crazy Ohio weather would probably mess up the Indians home opener (it did). I'd also like to shoutout GoFundMe. The platform itself doesn't get enough props when one of these campaigns succeeds but I won't let it go understated. I'm a GFMhead for life. I'm about to hit up their merch store (if it exists) and order a GFM hoodie that I'll wear an obnoxious amount. And finally, I thought raising the money for this would be the hard part, but you guys made it easy. Improving and raising more awareness about LGMD itself is going to be the hard part, but I'm going all in and excited to keep everyone posted. Through this campaign, after months of ups and downs with the condition, a lot of convos with other patients, and a few Drs appointments -I'm hopeful, inspired, thankful, obsessed with improving, realistic (kinda), and a little pissed off. Seems like a good combo going forward. More soon, Tony 

As many people who might read this know, I’ve been raising funds over the past couple months to pursue possible treatments for a condition called LGMD2i that I and very few others suffer from. People I know have been incredibly supportive and, aside from the financial goal, I’m hoping it (and a few other possible projects I’ve got cooking’) will raise awareness for this very rare set of muscle diseases.

But what I’d like to talk about and get EVERYONE to rally around today is something that those of us who suffer from these and other rare conditions often face: there’s a whole lot of fun shit that “normal” people get to do everyday that we can’t take part in. It’s common for large groups of coworkers, classmates, and friends to organize group events that can be physically impossible or even just difficult enough for some differently abled members of said groups to participate in. They might feel completely left out or just have to stress about how their limitations could prevent them from enjoying such events. One of the most prominent is a trend that has exploded in NYC, LA, and probably everywhere in between: SoulCycling.

SoulCycle is something groups of young-to-youngish people freaking LOVE to do themselves and recruit friends/coworkers for. As described on their website, SoulCycling includes “rockstar instructors that guide riders through an inspirational, meditative fitness experience that’s designed to benefit the body, mind and soul. Set in a dark candlelit room to high-energy music, our riders move in unison as a pack to the beat and follow the signature choreography of our instructors. The experience is tribal. It's primal. It's fun.” Uhhh..yeah. Sound pretty awesome to me. Another great thing about SoulCycling with your friends is that you’ll eventually look just like the people they show on their website. You can even rock SoulCycling officially licensed merch. I’m personally a fan of the branding that looks questionable similar to the “Jackass” logo.

Unfortunately, SoulCycling isn’t in the cards for me right now. It’s a bit too intense for what I can handle with LGMD and straight-up impossible for others. Now I am by NO means saying people should stop making group plans that involve doing intense physical stuff. Appreciating and getting the most out of an able body is awesome. If I could participate, you better believe I’d be down for SoulCycling, rock climbing, and  making every M-F after work my own personal episode of Global freakin’ Guts. No question. What I AM proposing is that we all do something together in honor of those who might not be able to SoulCycle: I call it SoulSistering.

I am requesting that, for the week of February 22nd to the February 29th, everyone should unify by listening to TRAIN’s 2010 smash hit “Hey, Soul Sister”.  Everyone remembers this song because 2010 wasn’t that long ago and you certainly heard it while choosing your salsa in Baja Fresh. You certainly heard it in any commercial that year that didn’t have a Black Keys song in it. It was the song that made it legal for a male over 25 to play a ukulele (a law that congress since overturned). I am proposing that we all start and/or end our days by firing up Apple Music (or some lesser streaming service I guess) and enjoy the words of Patrick Monaha.

Of course I’ve given some thought to how this experiment is somewhat contradictory to the goal of inclusion. What about the hearing impaired? This might be a stretch, and if so I do apologize, but I feel like HSS is such a hit that even reading the lyrics can be catchy. “You can cut a rug. Watching you’s the only drug I need. I’m so gangsta, you’re so thug”. HSS is more than a piece of music, it’s the all-inclusive resort of pop experiences. Also…you better believe there’s a HECK of a lot of HSS ASL videos on YouTube. 

Lastly, I feel like I should note that I am NOT trying to make fun of Hey, Soul Sister. I love pop songs and think it’s great that anytime an exceptionally popular one from the past comes up on satellite radio somewhere it can take you back to the epoch when you heard it at nauseam. HSS for instance makes me think of finishing college, almost getting mugged at 4AM in Chelsea, Manhattan (NYC friends, I don’t feel like that’s common?), the NBA’s insane 2010 free agency, and meeting my (now) wife. In 2016, I want it to make me think of UNITY, which will make me like it even more.

So I hope a good bit of you happening upon this will join me in SoulSistering next week. Think about how this is one thing people of all abilities can enjoy together! Who knows, maybe Monaha and the boys will help spread the word? And by all means…YES! You can SoulSister while SoulCycling! WHEN (not if) I’m able to, I will join you in doing the same.

Spread the word and let’s SoulSister together at least once a day February 22nd to 29th, 2016.