Eyes Wide Open

A Perspective From Within


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Pay(Pal) it forward

It’s been months since I’ve posted anything. Between my mother passing away and trying to deal with everything else in my life, my post would have most definitely been a Debbie downer. I finally have something positive to write about, and it’s really not about me.

My cousin Joani is celebrating a big birthday soon. She’ll be turning 60—so hard to believe. Joani recently phoned me to propose an amazing idea—rather than having a big birthday bash for herself, she’s decided to do a “charity boot camp”. Joani has been known to always be the cousin who “marches to the beat of a different drummer”, so breaking a major sweat and painfully elevating her heart rate far past the “zone” seems like a perfect birthday gift to herself. I still prefer the kind of gifts that you can open, but that’s me. Joani wants to donate the money raised at the bootcamp to a charity or non-profit that helps people with spinal cord injury, and also wants to make the donations in my name. I’m so honored that she would include me in her special and momentous day, and make it about helping others (and also getting into her skinny jeans). Joani expressed to me that she thinks often about what I have to endure on a daily basis just to do the simplest of things, and is thankful that her body is still physically healthy and able. I can’t even begin to tell you how much I wish I could get on a treadmill and run or do a crazy circuit in the gym. Those things that I complained about and dreaded pre-injury are just the things that I wish I could do again today, post-injury.

When Joani told me that she wanted to raise money for SCI, I knew right away where this money should go…to a non-profit called The Woody Foundation. I met the foundation’s namesake, Woody Beckham when I first started outpatient therapy at Miami Physical Therapy. Woody started out being a bit of an enigma to me. I’ll elaborate. When I first started inpatient PT at Jackson, I always wondered why, in the middle of an early 80’s looking physical and occupational therapy clinic, there was a sleek and modern Miele kitchen. It basically can be compared to seeing a Bentley parked under a carport of a double-wide trailer. It was really something that peaked my curiosity. I finally asked one of the therapists about my nagging Miele mystery.

Enter in: The Woody Foundation

She told me that the kitchen was donated by a guy named Woody who had a spinal cord injury in 2011 (about a year prior to my injury) who also attended Jackson inpatient rehab. She went on to say that Woody started a foundation that raises money for the recovery of people with SCI. The foundation also helps to raise awareness and lend financial support to local organizations helping to rehabilitate and cure paralysis. Concentrating on reaching out to the newly injured is a top priority of Woody and his foundation. I can tell you firsthand, Jackson Hospital did a horrible job in preparing me for what I had to deal with in the coming year. The social worker did nothing to help with my transition. I was basically given a Christopher Reeve’s Foundation book, and was told that it had a lot of valuable information in it for me. I wish that I had a foundation like Woody’s to better prepare me, because honestly, it’s pretty fucking scary. The Woody Foundation is the type of organization that makes a direct impact on people’s lives. There’s a lot of charitable organizations out there that seem to have a constant stream of big dollars going in, but you never really see where that money ends up. Woody’s foundation is what I consider “tangible help”. You can actually touch, feel and see the dollars at work. A perfect example of tangible help is “The Woody Pack”. It’s brilliant. He personally curated a collection of assistive devices for people with limited hand function, after dealing with his own personal challenges with adjusting to this new life. Quadriplegics most of the time have very limited or non-existent hand and wrist function, and Woody discovered various devices to help him regain his independence thus eliminating the need for help from others with simple life situations such as eating, drinking, using a cell phone, etc. Trust me, I hate being dependent on people. It makes me feel like a burden, and that’s the last thing that I want. Imagine how many times a day you use your hands to pick-up a phone, cup, pen, fork or ID. Individuals using devices in The Woody Pack can overcome these and other daily obstacles. Believe me…hands and fingers are not overrated (some days, I feel like I have dog paws). Woody’s goal with these packs is to share his experience of regaining independence with others so they too can have the joy of going about their day…on their own. The cost to put together each pack is around $200 (anything for the disabled is expensive) and Woody provides these packs free of charge to people who can benefit from them. You can read all about Woody’s Foundation on his website at http://www.woodyfoundation.org.

Back to my story.

The thought really never crossed my mind that I would actually meet Woody, but when I started my outpatient therapy at Miami PT, I finally met him. I expected someone much older, not someone in his early 20’s. I know when I was in my early 20’s, being altruistic and giving back was not at the top of my list back then. I also thought how when I was a year into my injury, helping others was not even remotely a priority for me. I was consumed with dealing and adjusting to this life changing and catastrophic injury. I had a hard enough time being me. When I see Woody, I’m amazed at what he does and what he has accomplished so early on in his injury and life…starting a foundation, going to college, boating, you name it. I had a hard time going ANYWHERE and doing anything, and I still do, to a certain extent. Call me selfish, but I’m still a bit consumed by myself trying to figure out all this paralyzed BS.

How you can help.

The bootcamp is on August 2nd at a place called The Fitness Factory in Rotterdam, NY. A Facebook event was created that explains everything:
https://www.facebook.com/events/1019035101459474/
The trainer and the facility will be donating their time, and rather than people paying a fee for the bootcamp, they are asking for anyone participating to make a donation to The Woody Foundation instead. Joani’s goal is to raise $6000. Now, I’m pretty sure that most of you will not be able to attend the bootcamp, but you can still help us meet this aggressive goal. Donations can be made online directly to The Woody Foundation’s website. Here’s the link:

http://www.woodyfoundation.org/event/joanis-birthday-bootcamp-fundraiser/

When you click this link, scroll down and click the “donate” button.  A generic PayPal page will come that will say “The Woody Foundation” at the top.  You are in the right place.  Log in to your PayPal account and follow the directions from there. If you don’t have a PayPal account, there is a link at the bottom of the PayPal page that will instruct you what to. There is not a section that you can make a note about the donation being in my name, but The Foundation rarely gets online donations, so they will know what the donations are for.  Lucy Foerster, the Executive Director of the Foundation is keeping track of the donations and posting goal updates on https://www.facebook.com/events/1019035101459474/

Please join me in making a donation to The Woody Foundation and this great cause. The foundation is a 501(c)(3) not for profit organization, therefore, your donations are tax-deductible. You will receive a tax-deduction receipt upon completing your donation online via Paypal (using the link above). You can also send a check to the below address payable to the Woody Foundation, Inc.

Woody Foundation, Inc.
12500 Virtudes Street
Coral Gables, Florida 33156

Together, I know we can make a difference for individuals and families dealing with SCI!

Joani and I March 2014

Joani and I March 2014

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The only place where success comes before work is in the dictionary. ~Vidal Sassoon

I asked my Miami PT therapist, Carla Ruhl, to write something about the various activities that I’m doing at therapy and the strides that I’ve made. It’s interesting to see my progress through someone else’s eyes, especially someone who knows the technical aspects of what my level of injury will yield. I’m my worst critic. I’ve always been, and I get disappointed about my therapy successes when I should be celebrating them. I know that I need to be more positive about how far I have come considering the catastrophic injury that I had, but that’s easier said than done. June 11th will be my one year anniversary for my injury. If you had asked me when I was in the hospital what I would be like June 11th 2013, I would’ve told you I would be walking and back to work. I know that my expectations were probably not reasonable, but I might not have gotten to where I’m at today if I didn’t shoot really high. After reading Carla’s note that she sent me for the blog, I’ve realized that I truly have done some incredible things, and I need to give myself more credit…

These are Carla’s words:

When Mary asked me to write something about her so that she could put it her blog, I wasn’t surprised. From the first sessions that we worked together, I knew she’d be different.

She’s the type of person….type of patient that inspires you…pushes you. She’s sassy and remarkable in many ways. I could see from our evaluation that she already had a particular presentation allowing her to feel below her level of spinal cord injury (very lucky). Considering the extent of her injury I knew what expectations I had for her. But she’s accomplished those and more. She also has this attitude…knowing what she wants….not taking no for an answer.

In 25 years as a physical therapist I have had the experience to work with and know several “SUPER quads”. Can there be something such as a SUPER SUPER QUAD ?. It’s not really tangible…she’s just doing things that are amazing….activities that have me asking “where is that coming from because I wouldn’t expect that from my muscle testing scores ? ”. With each new challenge I give her, she says “lets do it”….she wants to perfect her movements, her new exercises. As you’ve seen in the pictures and videos she’s moving throughout what therapists call the neurodevelopmental sequence (in simple terms, they are the movements that helped us as children develop strength, stability and mobilty….movements that trained us to move from laying on our backs to our tummies to crawling and in time, walking). I hope that this will be the case but…I can only say that we need more (it’s so redundant isn’t it ?…always wanting more). More function, I mean, in the legs to accomplish this full neurodevelopmental sequence but for now…..Mary’s abilities are AMAZING ! She has developed postural strength, balance and function that considering her level of spinal cord injury surpasses our expectations.

We will continue to work…continue to work on sit to stand transitions (who knew ?)…standing balance (WOW!). I look forward to our intensive 4 hour sessions…her desire to work hard… her willingness to push the envelope inspires me…inspires those around her. As I have read in her blogs and have had the honor of meeting her friends and family, I have come to understand that she has always been this intensely charged woman. Thank you Mary.


18 Comments

“Fitness, if it came in a bottle, everybody would have a great body.” – Cher

It’s been a while since I have posted a blog update. I really need to be more disciplined with my writing because I actually have a lot to say.

I frequently get asked about what I do at therapy, so I thought a play by play should be in order.

First of all, I have to say, I love therapy. Prior to this accident, I was in the gym religiously 3-4 times per week, but I can honestly admit, I never truly loved working out. I’m quite sure there are more people than not who share this same sentiment. I think most people are lying when they say they do. These are the people who have all of the latest workout gear, but you’ll find them standing on the treadmill talking about how much they go to the gym. They move their mouths more than they move their bodies. I never understood how people became addicted to working out. After 15+ years in the gym, I’m still waiting on that runners high everyone talks about. Truthfully, my only driving force that kept my weekly schedule was the fear of getting fat, because I love to eat and I love couture. Lanvin has not launched a plus size line yet, and I don’t like to throw up, so going to the gym was the next best option. I know my trainers at the Yellow Creek gym are reading this, so I guess the cat’s out of the bag. Lynn and Cody, both of you made my workouts fun and tolerable!

This is why I find it oddly surprising that I love therapy. What I do at therapy is 20 times harder than the most intense workout that I’ve done in the past, but I still like it. Maybe it’s the challenge that drives me, but truthfully, at the end of the day, my priorities are a little different now. I still have a fear of getting fat, and I’m still obsessed with runway fashion, but the fear of never walking again and being faced with being dependent for the rest of my life scares the shit out of me (and couture clothing never looks good while seated either).

I have been attending Miami Physical Therapy (in Coconut Grove) since September of last year. I feel comfortable and at home there, which I think is a particularly valuable factor in any recovery. The entire staff is not only positive, supportive and knows their shit, the Cuban coffee that they make there is delicious. I’m addicted to it and usually start bothering Omar, the Cuban coffee making PT attendant, to make some as soon as I get there.i think he gets a little annoyed with me because I really do nag him until he makes it. All of the attendants are PT students. I really enjoy having them around to shoot the shirt with.

If I had the stamina I would go to therapy Monday through Friday, but my body definitely needs some recovery time. As it is, I’m there 3x per week, and have increased my sessions from 3 hours to 4 hours per day, which is extremely aggressive. I’ll get home around 6pm and will literally pass out. What I was able to do prior to September 2012 and what I can do now is undeniably night and day. Back then, I thought I was a bad ass at Jackson rehab when I was on NBC Miami news for the most pull-ups completed during the Jackson Memorial Olympics. That seems so long ago.

Today, Carla, my therapist, has presented me with new challenges that I hope gets me just a little bit closer to regaining what I have lost. I have wrote in the past about the stim bike and the standing frame, which are still an integral part of my therapy repertoire. In addition to those, I am doing something new and exciting. See the video below. I started doing this a few weeks ago, and the video is already obsolete. I can actually get up on all 4s with little or no assistance. This is quite an accomplishment since most of my core is still paralyzed.

The main reason I was able to progress to an advanced activity like this is because I regained a small amount of my core back. This includes obliques, flickers of the upper part of my rectus abdominis and a muscle in my back called the erector spinae. What is important to note about these muscles is that they correspond to the spinal nerves that are below my level of injury. My injury was at the cervical region (C6/C7) and these new flickers of muscle movement correspond to the thoracic region of my spine, meaning that there is some communication occurring down my spinal cord. Below is a good chart that shows the spinal nerves and corresponding muscles.

image

This is exciting but still not enough for me. I want tangible movement that I can see, which is why I go at so hard at therapy. I have no choice…

Me quadruped holding myself up

Me quadruped holding myself up

Sit to stand-holding myself up

Sit to stand-holding myself up

Sit to stand

Sit to stand

Sit to stand-holding myself up. Perfect posture.

Sit to stand-holding myself up. Perfect posture.


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The Miami Project Human Trials Have Begun!

I wanted to share this letter that Ross just received today from Nick and Marc Buoniconti regarding the first transplantation of the Schwann cells in a human! This is HUGE news for people with SCI. A cure is not too far in the horizon!

WE’VE BEGUN

Dear Friend:

This has been one of the most exciting days ever at The Miami Project and The Buoniconti Fund! As one of The Miami Project’s biggest supporters, I wanted you to be one of the first to know that Miami Project doctors and scientists have performed the first ever FDA approved Schwann cell transplantation in an individual with a new spinal cord injury.

The transplantation procedure was conducted by Drs. Allan Levi and Jim Guest. The participant had a neurologically complete thoracic spinal injury and received the transplantation of autologous Schwann cells approximately 4 weeks post-injury. There have been no adverse events and the team is moving forward with the trial. The procedure is a Phase 1 clinical trial designed to evaluate the safety and feasibility of transplanting the patient’s own Schwann cells.

“This historic clinical trial represents a giant step forward in a field of medicine where each tangible step has tremendous value. The trial and these first patients in this trial specifically, are extremely important to our mission of curing paralysis,” said Dr. Barth Green, Co-Founder.

“The Miami Project team includes hundreds of scientists, clinicians, and technicians who have joined hands to make the ‘impossible possible’, for which this trial is a key goal and dream now being realized. This achievement reaffirms that the tens of millions of dollars and the incalculable work hours were well invested in this first of a kind human Schwann cell project.”

Led by Miami Project Scientific Director Dr. Dalton Dietrich, the Schwann cell clinical trial team at The Miami Project is composed of a multi-disciplinary group of basic science and clinical faculty members, scientific staff, and regulatory personnel focused on advancing the trial.

“As a basic scientist, the hope is always to increase knowledge and discovery. Not every day are you able to see that translated into the clinical realm with the hopes of bettering the lives of those suffering, so this Phase I clinical trial is a vital step for the field of SCI research, and for The Miami Project team that has been working diligently on this therapeutic concept for more than a quarter of a century. This trial, when completed successfully, will lay the critical foundation for future cell-based therapies to target spinal cord injuries,” said Dr. Dietrich.

Because of YOUR support and the dedication of our scientists and doctors, a cure for paralysis is on the horizon. No longer are we just talking about cells in petri dishes with the hopes that some day in the distant future they could be translated into a possible new therapy. Today, we are actually operating on people and testing the safety of Schwann cells in people with a spinal cord injury.

This is such an exciting time at The Miami Project and I hope we can count on your continued support. Thank you for believing in us.

Sincerely,

Nick Buoniconti
Marc Buoniconti