Reeve Foundation Paralysis Community

Dana Reeve would have been 49 today (March 17th). There are a lot of folks still here at the Foundation that worked with her, and I mean worked. She envisioned and implemented what is our Quality of Life program, born out of her first hand knowledge of how tough it is to care for a loved one living with paralysis.

"Sweet Dana, was such a caring, beautiful, funny, smart, and passionate woman," says Donna Valente, who runs our Quality of Life program and worked closely with Dana. "We used to spend hours upon hours in a small room with no windows going over boxes of grant applications.  She was the epitome of class with a wicked sense of humor, and she dedicated so much of her life to making life better for other people. Chris and Dana were very kind, enormously talented and special people and will always be my heroes."

Dana once said, "Anybody who has experienced any kind of profound loss or tragedy knows that is changes you. It’s a relief to find out you can actually redefine what’s normal."

(Dana is pictured above with long-time friend Robin Williams.)

It's a beautiful day to go out and redefine normal for yourself.

Rob

Links about Dana:
Her last public appearance was singing at a Rangers game. The Rangers are good  friends of the Foundation.

Long-time friend, Cristina Carlino, founder of philosophy, has a tribute to Christopher and Dana's love story on her company's site.

There is a biography on our site and Professir X, a musician who is part of the paralysis community, posted a wonderful video tribute to Dana and Christopher.

There are many links across the web about Dana, but My Hero Project is one of my favorite. It includes links to two NPR interviews about Dana.

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Dr. Dan Gottlieb is in our community every Tuesday offering his advice as a family psychologist and answering questions. He also has a new book coming out: The Wisdom of Sam: Observations on Life from an Uncommon Child. I was lucky enough to get an advance copy. I can't tell you how inspirational and motivational this book is. It is a collection of observations and life lessons that I just could not put down. I would finish a chapter and think, Oh just one more. And stayed up half the night reading!

Dan's posted a video with him and Sam in it. You have to see it.

Here's just part of a recent post by Dr. Dan:

I just did a radio show on neuroplasticity, how the brain, with practice, can actually heal significant deficits that we used to think were incurable. The mantra of the fees nor a plastic experts is: "neurons that fire together wire together". So that when we do something enough it becomes habit -- no matter what we do.

We know how that works with dozens of our little quirks. But it works exactly the same way with our worldview. The more we express it, the more we believe it, the more it becomes our truth. "I am a quadriplegic and I will never experience joy again." That's what I felt for the first few years. Fortunately that belief system was not locked in so that when I did experience joy, I slowly changed my worldview.

Read more.

Rob

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This from Monday's Washington Post:

One year after President Obama announced he was lifting his predecessor's controversial restrictions on federal funding for human embryonic stem cell research, some scientists are complaining that so far the new policy is -- ironically -- more of a burden than a boon to their work.

Read the rest.

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A recent paper in the journal Nature Medicine sheds some important new light on the underlying mechanisms of spasticity that often develops after a spinal cord injury. Involuntary contractions of muscles, or spasticity, can have potentially serious consequences, and although medications are available that reduce spasticity, they can also interfere with positive motor functions or rehabilitation.

Although spasticity represents an involuntary movement of muscle, the muscular activity originates with excited neurons telling the muscles to constantly move and contract (hyperexcitability). Previous dogma held this hyperexcitability to be related to uncontrolled intracellular levels of sodium and calcium in the nerve cells.

This new paper identifies changes in intracellular chloride levels as a potentially important regulator of spasticity. The authors, Boulenguez et al, also identify possible "upstream" mechanisms, including decreases in the neurotransmitter BDNF, as responsible for controlling the chloride levels, thus hinting at new targets available for therapeutic intervention.

An accompanying editorial by Drs. V. Reggie Edgerton (pictured) and Roland Roy states that, "Further study of these adaptive events is likely to lead to a better understanding of the phenomena that underlie spasticity and ultimately provide ways to alleviate its symptoms in a safe and effective way. Dr. Edgerton is a member of the Reeve Foundation's International Consortium on Spinal Cord Injury and its science advisory council. 

The research was partially supported by a grant from the Reeve Foundation to the lead author Laurent Vinay, as is ongoing follow-up work on this project.

Douglas S. Landsman, Ph.D.
Director, Individual Research Grants Program
Reeve Foundation

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This is for a pilot with Paul Reiser. It's very cool because you can do it all online. You make a demo tape and upload it to their site.

They are looking for ZEKE : MALE. 11 years old. Please submit ages 10–13. The kid is sweet, funny, really smart and upbeat. He loves sports, music, and everyone he meets – especially adults. Inquisitive and with a mind like a steel trap, he remembers everything – which can be good or bad! He can easily get anxious and sometimes gets a bit obsessively focused on things.
And oh, he has used a wheelchair since birth.

Find out more here.

Good luck and please remember us when you hit the big time, kid!

Rob

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I've have written about Elle here a lot. (I looked it up, nine entries since October 2009.) She is now a high school sophomore and is back out on the track, racing in her wheelchair.

Last year, some of the schools in her league did not want to recognize her as a team member. Work was done, meetings were held, and this year she (and any other high school wheelchair athlete in the state of Florida) is allowed to compete.

The local TV news just did a nice piece on her where you'll find out why she has the nickname: "beast mode."  Watch the video.

Read the story Elle's mom wrote about her.

Rob

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The Paralympics start on Friday. Last week I mentioned that we had gotten to know one of the curling team members, the only woman as a matter of fact -- Jacqui Kapinowski.

Four months to the day after she began learning the sport of curling, Jacqui Kapinowski won her first Paralympic Bronze medal in wheelchair curling -- the first ever medal in the event for the USA. A year later in 2009, the team placed fourth.

“We’re hungry this year,” says Kapinowski. “Placing fourth made us hungrier!” Similar to shuffleboard, wheelchair curling consists of one tournament where players take turns pushing stones down a sheet of ice towards a series of circles. The team with the most points, or stones, closest to the center circle wins.

Read the rest.


Rob

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