New in the PRC Library…

You and Me Against the World by Vinny and Mojca Integlia as told to Jack Galvin. c. 2005. 295 pages. Available as an electronic download for $9.95. You can read the first chapter for free here .

Vinny Integlia is a public speaker and businessman who became a C5/C6 quad at the age of 17. Vinny first came to our attention through his sister Sonja who was a long time volunteer and currently an employee at the Reeve Foundation. Vinny has led a full life, earning his college and masters degree, holding various positions in the business world, and raising money for spinal cord injury research. Vinny also plays various wheelchair sports, has testified at state and federal hearings on spinal cord injury, introduced legislation related to personal care attendants, and created his own non-profit foundation: Vinny’s Spinal Cord Research Foundation of Rhode Island. Vinny had to overcome a second major health issue when he was diagnosed with cancer in his sinus which resulted in losing an eye. Vinny dedicated the book to his mother Mojca who writes chapters in the book from her point of view. The book covers the time period from his injury while diving in the ocean to his graduation from college.

A copy of Vinny’s book can be checked out from the Paralysis Resource Center’s library. Please see the online catalog and borrowing instructions here.

We talk a lot in our online community about Dr. Dan Gottlieb. He is our resident family therapist and answers questions live in the community every Tuesday. When I found out a few weeks back that he would be visiting the office I thought “Cool, I get to meet the guy that’s in our community every week!” After meeting him though, I admit he is much more than that cool guy in our community every week!

It really was an honor to have met him. If I were asked to describe Dr. Dan in one word, my answer would be ‘bright’. His intelligence, wit and humor, persona, and overall outlook on life are bright. (Dr. Dan is pictured here with our Director of Digital Media, Rob Gerth).

Sometimes people tend to lose interest and have short attention spans. After an hour and a half, I felt like I was only sitting in the room with Dr. Dan for ten minutes. Everything he said was insightful, real, and well, bright.

Despite Dr. Dan telling us about some of his own personal experiences, one line really stuck out simply because anyone can relate to it…

“It is much easier to be the person we are than to be the person we think we should be.”

Honestly, sit back and read that over a few times. It doesn’t get brighter than that.

As Dr. Dan spoke, he spoke fluidly and from the heart. He spoke openly, something he agreed makes life much easier.

Reading over my post just now, I realized I used a whole lot of adjectives to describe Dr. Dan. Maybe that is the journalist in me. However, I tend to think I wrote this way simply because, well, it’s the truth. The best adjective to use however, is the one Dr. Dan uses himself on his business card – HUMAN.

Thanks Dr. Dan for coming by and brightening up my day!

Janelle

PS - Learn even more about Dr. Dan on his website, including his books and radio show. 

  Like us.     Follow us.
Subscribe to us.  Join us.

As I approached the Kessler Institute on Tuesday I thought “is this the place that Christopher Reeve received rehabilitation?” Wow, now I am here to observe what he began for the disabled who have hope in the recovery process. . . even more amazing.

The NeuroRecovery Network (NRN) is set up in such a way that is inviting to those who go there. A very warm and motivated environment in which people who go there can feel “at home”. At home in the sense that they can work on themselves and know that all who surround them want the very best for them in their recovery process. A home in which there is a sense of peace while there is a nurturing environment in which to gain as much as possible while not being distracted. It is a team atmosphere that anyone who is striving for a positive common goal can work on in their own time without any pressure. Just do it and do it at one’s own pace.

This is how Michael's outlook is.. Michael (pictured) was injured in a skiing accident a couple of years ago. He has an incomplete C4 level of injury. He drives every day for 2 ½ hours each way from Pennsylvania. As I watched Michael using the “NRN” I sensed the strong determination and motivation. He was set up by his Kessler “team” on the harness while his legs were being moved on the treadmill. This movement is done for one hour with a break by the half hour. This was Michael’s 84th visit since April of 2010. Wow! What determination! He also has the support of his family and friends. We also met his Physical Therapist, Buffy, who has been with Michael since being at Kessler following the injury. Michael stated that “the Christopher & Dana Reeve Foundation with the help of Buffy are the driving forces that have brought him to this level of recovery”. Following the treadmill Michael proudly showed everyone how he can now stand on his own for about a minute at a time. He is also able to sit out of his wheelchair without falling from side to side. He has accomplished these two events in less than six months! In addition to this, he is also off of Baclofen which has been used for spasticity. This in itself is a miracle!

Overall, I am very impressed with the NeuroRecovery Network. It is one thing to read about this program or view it online. However, when one has the opportunity, as I did, to actually view it in person, one has a totally different outlook on the recovery process. This is the beginning of something greater within the recovery world. A piece of scientific research that participates in the big picture of hope. I am glad that I can share this experience with you. I hope that I have given more reason and inspiration to those and I hope that the dreams do come true one day.

Qualifications and more about the NRN are stated here.

Sonja
Assistant to Director
Quality of Life Grants

  Like us.     Follow us.
Subscribe to us.  Join us.

If kids haven't already gone back-to-school, they soon will over the next week or two. Another summer come and gone, another year of multiplication flash cards for elementary school kids, decorating lockers for middle and high school students, and buying only the best gadgets, like single-cup coffee makers, for your new dorm room for college students.

Back-to-school days, some love it, some hate it, and for some there are challenges not everyone has to think about. For those going back-to-school in a wheelchair, preparation is a little more than just buying notebooks and pencils.

We wrote this back-to-school piece last year so it's time to share it again. Whether your child is is grammar school or going to college, the story gives some tips and tricks on what back-to-school means on wheels.

Here's some advice from Back-to-School: What it Means When You're in a Wheelchair.

Corey Mineo, (pictured) a 21-year-old senior psychology major at the University of Colorado Denver (UC Denver), knows about living a college life in a wheelchair firsthand. Diagnosed at age one-and-a-half with Muscular Dystrophy and Charcot Marie Tooth, Mineo urges that preparation is the most important aspect of getting ready for college.

Before attending UC Denver, Mineo studied at a local college. "I decided to go to a two- year community college (Colorado Mountain College)," explains Mineo, "It is much more personal and really helped me to transition. I didn't feel it was best to go right into a big university. It was a big step, it helped build a drive to go to the next level."

Read it all here.

Wondering where the most accessible colleges are? Here's a top ten list. Some of the universities are featured in our story too.

Janelle

  Like us.     Follow us.
Subscribe to us.  Join us.

At about 10:45 last night, I'm winding down watching some TV when I hear this loud crash noise.

I immediately look out my bedroom window, run downstairs out the front door, and to the corner. I see a teenager laying in the street. Luckily he was concious but then I noticed blood on his head. He tried to move and so our conversation was something along the lines of:

Me: "Buddy, do not move! Can you feel everything?"

Him: "Yea. I'm okay just this blood on my head and I think I broke my finger. Um mamm, can you please find my longboard?"

Me: "Sure."

Him reaching for his cell phone: "I'm just going to call my friend I was supposed to meet."

Me: "Why don't you call your parents first!"

As we were talking, I noticed a motorcycle laying in the road and another person about 30 yards away. This 18-year-old boy on his longboard (like a skateboard) and a man on a motorcycle collided. (I later read in the newspaper the man on the motorcycle was driving under the influence.)

Now unfortunately, I hear loud noises and see crashes more often than I'd like near where I live, so it didn't come as a surprise to me. My entire life I have lived in this same house on this same pretty dangerous corner. I've seen everything from fender benders to a young kid on a bicycle being hit and pinned underneath a car.

Scary? Oh yea.

What got me most though, was this was the first time I actually went outside and thought of something more than to just call 911. The guy on the motorcycle was wearing his helmet, but the 18-year-old was not.

As we said in our video newsletter earlier this summer, you might think you look cool either not wearing a helmet or wearing it the wrong way, but you sure won't be protected.

Once cops and ambulances came, I walked back over to my house and stood there for a few minutes looking at the scene. I didn't ask any further, but it appears, both of the individuals were pretty much okay. They got off lucky, because as we know, this isn't always the case.

So I urge you, as the last weeks of summer are upon us, do not forget our simple summer safety tips. And share the tips with your friends, too.

Watch the video.

Read the summer safety checklist.

Janelle

  Like us.     Follow us.
Subscribe to us.  Join us.

We started the search for the Best Dad on Wheels 2010 right around Father's Day. That was June. It's now the end of August, and believe it or not, the first round of the contest is coming to a close!

You have until September 3rd to tell us all the fabulous reasons (in 200 words or less, please) why the father you know should be crowned this year's Best Dad on Wheels.

When we started the contest, I thought about Christopher Reeve, (pictured here with daughter, Alexandra) and how even though he was living with paralysis he showed his children there was no such thing as limitations.

There's a lot of dads out there just like this. Tell us about that special dad you know.

Get those entries in. The countdown is on! 

Janelle

  Like us.     Follow us.
Subscribe to us.  Join us.

Here is a piece from the latest post from Blog Squad Contributor, "Walking Quad."

As newborns, one of the first things we fixate on and discover is our hands. Parents of newborns watch in amazement as their young baby stares and explores their hands and fingers for hours. How can something so simple hold such amazement and interest? Hands, are amazing in all they can do; zipper your pants and button your shirt, hold your lover’s hand, carry a bag, turn the page of a book, hold a steaming cup of hot coffee first thing in the morning, and nurture your garden. What happens when your hands betray you, no longer cooperating and doing what you need and want them to do, what then?

When I transitioned from a walking para to a walking quad I realized just how much I had taken my hands for granted. I have central cord syndrome, so even with significant recovery, my hands and fingers continue to betray me, something that I am reminded of on a daily basis. I have dealt with severe neuropathic pain in my arms, hands and fingers that often prevent me from even wearing a long sleeve shirt, covering myself with a sheet or shaking someone’s hand using my right hand.

Can you relate? Read it all here.

  Like us.     Follow us.
Subscribe to us.  Join us.

FC Dallas is competing with other Major League Soccer teams for a $50,000 Pepsi Refresh grant. Their idea is to help educate kids living with paralysis, and their families, about physical activities available for all levels of ability – even for kids that use power wheelchairs.

Voting ends September 20th, so hurry up and vote now!

Want to learn more? Watch this video of FC Dallas captain, Daniel Hernandez.

Join Daniel Hernandez and the FC Dallas team! Vote now and tell all your friends!

More on living an active lifestyle.

  Like us.     Follow us.
Subscribe to us.  Join us.

I can't get enough of those feel-good success stories after someone is injured. Here is one out of Allentown, Pennsylvania that I couldn't help but to share.

Here's Jeremy Torres (pictured) in his dreams, sneakers squealing as his feet stutter on the hardwood, arms pinwheeling, a hustler's sweat drenching his jersey. He's the answer to a coach's point-guard prayers, a floor general with an eight-cylinder engine inside. But in the dreams, he's also a scorer, and can dunk with thunderous authority. In dreams, he points out cheerfully, even someone 2 inches shy of 6 feet can dunk on rims of fantastic height.

Awake, his legs and arms don't work, and he gets from place to place in a motorized wheelchair that hums, buzzes and chirps and is guided by head motions. This is his 10th year in a chair, since a car accident at age 21 cracked his spine and put an end to the athleticism that made him a well-regarded varsity basketball player in his student days at Allentown's Dieruff High School.

Imagine coming to terms with that. The limbs that served you across unnumbered miles up and down the court — not to mention the football field and cross-country courses, because one sport was not enough to relieve Torres' energy — would never move again. (Photo credit MICHAEL KUBEL, THE MORNING CALL)

Read the rest of Jeremy's story.

View the video!

Have a success story you want to share? Tell us.

Janelle

  Like us.     Follow us.
Subscribe to us.  Join us.

Stepping Forward-Staying Informed Evening Lecture Series Presents Lindsay Huisman Discussing Healthy Now, Ready for the Future: Being Prepared for Clinical Trials

When:
Wednesday September 15, 2010 6:30 PM

Where:
Boston Medical Center Boston University School of Medicine
72 East Concord St.
Hiebert Lounge, 14th Floor
Boston, MA 02118

Click here for more information or to register. Or register by calling 617-638-7314 617-638-7314

Registration Fee: $10.00 per person if received by 9/8/2010 (there is no fee for PCA’s to attend with employer) Registration at the door or after 9/8/2010 will be charged a late fee.

There will be an NSCIA SCI support group meeting immediately preceding this lecture. The support group will begin at 4:30PM. A family support group will be offered at the same time as the SCI support group. Please check in at lecture registration for both groups.

Parking is available for a fee in the Albany St. Garage and at meters around campus.

Register by September 8th to Avoid the Late Fee!

Saralee Perel is a friend of the Foundation and often writes personal stories about herself and her injury. Click here to read some of Saralee’s stories. (Look in the right column)

Her most recent one is about her dog, Gracie, I admit, it made me cry! I’m not a crier, but as I read Saralee’s story last night, Amazing Gracie’s Devotion, the tears were flowing! To anyone who owns a pet and knows how special they can be, this story is very relatable. Here’s a piece of it.

This month, I began writing one column after another for the Christopher & Dana Reeve Foundation, but nothing clicked. I finally realized my mind's been on a subject that I've been postponing putting into words. But now it is time.

My dog, Gracie, is coming to the end of her life. From the very moment she saw me in my Miami J neck brace after my spinal cord surgery, she was no longer just my dog; she was my lifeguard. This is my tribute to my beautiful friend's life.

Read it all here.

Thank you for another heartfelt story Saralee!

Janelle

PS: Here is some more news about some seriously inspirational dogs!

Take a look at this story about a pit bull mix living with paralysis who is a true inspiration!

This paralyzed dog climbed Mt. Washington in New Hampshire!

And if you really love pets and live in the New York area, be sure to participate in the "Pets over Paralysis" pet photo fundraising on October 3rd benefiting the Reeve Foundation!

  Like us.     Follow us.
Subscribe to us.  Join us.

The shores of Huntington Beach, California were packed with surfers, fans, and vendors during the US Open of Surfing. Among the crowd, as the official charity for the Open, was our very own Life Rolls On division. Our booth was full of fun and games to attract the bustling crowd.

On display in our booth was our new merchandise which was a total hit! The new designs are perfect for anyone’s sense of style. In addition to the merchandise, we also had a prize wheel (pcitured below). People were lining up by the dozens to have their own chance to spin and win. Prizes ranged from stickers to lip balm to the ever coveted pair of LRO shoes.

The best part of the Open, however, was getting a chance to meet new faces. We had the opportunity to educate more people about our foundation and it was an amazing experience to see the amazement they felt when they realized they could also help out.
All in all, the US Open of Surfing was a success for Life Rolls On! We were able to not only raise money, but also find people with the same passion as we do to helping people with paralysis roll on with their lives.

Jessica Anne Garcia
Life Rolls On Intern

  Like us.     Follow us.
Subscribe to us.  Join us.

As a former intern at the Reeve Foundation (intern class of summer 2009) I can not stress enough how awesome it is working here. So now yes, I’m sure this reads as some crazy way for me to push to get free work out of you, but I promise, it is much more than that. (That's me pictured on the right at a recent Reeve Foundation event!)

I admit, when I first signed on to be an intern I thought ‘this is going to look awesome on my resume.’ Boy, was I naïve to think that was all it was going to be. You probably hear a lot of your professors telling you how important experience in the field you want to work in is right? I’m here to tell you that believe it or not, they aren’t lying to you! I know, crazy isn’t it!? Interning here further clarified how much I wanted to write and work in the nonprofit world.

Interning with the Reeve Foundation is yes, something great to put on your resume, but it is also hands on experience. We don’t ask you to get coffee. We ask you to write stories, be in contact with our community members, help out at events, work with really passionate and spirited individuals, and occasionally even go to the beach with us to make video newsletters! Dana, a communications intern this summer, can atest to that!

I am proud and honored to say that I was once a Reeve Foundation intern turned full-time employee. Yep, sometimes I even miss those intern days!

In true Janelle fashion, I say the following to all aspiring Reeve Foundation interns… “Go Team!” So c’mon, be part of the Reeve Foundation team, apply now!

Janelle

  Like us.     Follow us.
Subscribe to us.  Join us.

In this study, Aileen Anderson and colleagues used spinal cord injured NOD-scid mice to test the ability of transplanted human neural stem cells (hCNS-SCns) to "survive, differentiate, migrate, and promote improved locomotor recovery." Because NOD-scids lack a functioning immune system, the hCNS-SCns were not be rejected. The mice were transplanted at thirty days post injury, which the study authors define as "early chronic" injury - meaning that the spinal cord environment has become fairly stable and is no longer dynamically changing as it does in the acute and subacute stages immediately following injury. The preliminary findings are encouraging, suggesting that early chronic injury might well be amenable to hCNS-SCn transplantation to improve recovery without evidence of any transplant-related pain.

Dr. Anderson is Scientific Director of the Reeve Foundation's Animal Core Laboratory at UC Irvine and the Foundation provided partial underwriting for this research.

Read more about the study.

Learn more about research.

  Like us.     Follow us.
Subscribe to us.  Join us.