We believe in empowering those affected by paralysis with the best knowledge, resources, support, and community.
I just want to take a minute to share with you a little about one of our most amazing Team Reeve athletes, John Carson (pictured).
John sustained a spinal cord injury at the C5/6 level (most injuries at this level result in quadriplegia, lack of hand function) one year and seven months ago on July 16, 2009. He was out training for a triathlon on his bike and was hit by an SUV. In the moments after the accident, John was in and out of consciousness, not fully knowing what was happening, but he knew for sure his life would never be the same.
John's family immediately reached out to our Paralysis Resource Center for answers and resources. As an athlete, he and his family knew he needed something beyond regaining the ability to walk to motivate him each day in physical rehabilitation. He set his sights on the Ford Ironman Lake Placid on July 25, 2010 -- just over a year after his injury.
The thing that I want to share with you that I think is most amazing about John, and I felt it from the moment I first spoke with him on the phone, despite all he and his family have been through in the last year plus, it's always been about others. He asked me if he could wear the Reeve Foundation colors and Team Reeve logo to help spread awareness of the work we continue to do, now that our most recognizable leaders are gone. He set his fundraising goal and to date has raised over $10,000 to support our foundation programs. For Chistmas last year, he asked his friends and family to forego regular gifts and donate to his fundraising page instead.
John is truly all we can ask for in an athlete, a volunteer, and an advocate of the Christopher & Dana Reeve Foundation. I can't tell you the number of times I've used John as an example of what you can do when faced with adversity and I believe he is an inspiration and mentor to our entire community.
You can read more about John here
Read more stories about our Team Reeve members
Leigh A. Alspach
Manager, Team Reeve®
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The Paralysis Resource Center (PRC) receives emails and calls from all over the world. Last week we received an email inquiry through our Spanish website (contact an Information Specialist (IS) in English
) from a gentleman being treated at a well-respected South American hospital.
He was experiencing autonomic dysreflexia (AD)
and his physician had identified bladder stones as the cause. He contacted the Reeve Foundation because of the severity of his AD and his physician telling him to just take Tylenol. The tylenol was not effective and his blood pressure was very high.
The PRC staff communicated with him in Spanish by email and telephone. In the course of the conversation we found out that his surgeon wanted to remove the bladder stones without anesthesia. The surgeon's belief was that because he was paralyzed he wouldn’t feel any pain. He wanted to know if this was safe for him to have surgery without anesthesia.
The staff explained (in Spanish) how his brain still receives pain messages even though his body no longer does. It would still be incredibly dangers and possibly deadly to have surgery without anesthesia. We sent a booklet on AD for him as well as a clinicians guide to share with his urologist.
The IS team members followed up via email to see if any additional information was needed. We received an email from his mother indicating the procedure was done under anesthesia and the educational material changed the physician mind. The bladder stone was removed safely and he recovering.
Knowledge equals power!
Here's a fact sheet on autonomic dysreflexia
Find out more about secondary conditions
Director, Information and Resources Services
Here is a an email I got last Monday (March 7th) from our contact at MetroHealth Hospital Foundation. They are a recent Quality of Life grantee:
Some wonderful things are happening here at Metro Health Hospital because of your support. I just couldn't wait for the final report to share some of the news. Check out the attached document.
Thank you so much for improving the quality of life for our ventilator dependent patients.
With utmost appreciation,
This is a sampling from the document she attached:
Metro Health Hospital’s Assisted Breathing Center (ABC) patients have access to five laptop computers- four laptops have been assigned to specific patients and one is rotated among the remaining patients. This technology connects them with family, friends, and the outside world.
Special adapted software and devices were made available to those who would not otherwise be able to use the computer, allowing them independence, facilitating better communication with staff, and improving their quality of life.
Imagine the hardship of not only having to live attached to a ventilator, but to do so with minimal contact with your friends, family, and the world outside your hospital room. The patients at Metro Health Hospital’s Assisted Breathing Center have limited mobility, as they struggle with traumatic and debilitating injuries and disorders.
The simple ability to email friends, network on social media sites like Facebook, and surf the internet greatly improves the quality of life for patients with limited mobility or communication. The computers and adaptive equipment provided by the Christopher Reeve Foundation have led to some remarkable improvements in vitality and emotional health of the patients in the ABC.
This is how your gift has impacted the lives of these patients:
I would like to thank the Christopher Reeve Foundation for the use of this brand new laptop. I believe I’ve had it in my room for about 2 months. I am on the trach ward at Metro Health, and I wean up to 14/15 hours a day. However, due to obesity, a four week coma, several deadly infections, and all the time I’ve been in bed – sedentary, I am not yet able to walk. So, no doubt, the use of this computer has brought me so much joy!
On Facebook, I have been able to partake of several wonderful pictures, for instance, my brand new “great” niece, Olivia. My son’s new residence, and all the pictures his wife posts regularly of their new adventures. And just being able to communicate with friends and family, as they are all 3/5 hours away. I am also able to use the computer in every way possible, and enjoy every minute of it. One night, I was so enthralled that I completely forgot to order dinner! To sum it up best, let me tell you of what I wrote on Facebook “Did you know that the use of this computer was made available to me by the Christopher & Dana Reeve Foundation?”
My son Andrew’s comment to that was “He is a super man.” Ditto!
Thank you so much!
Since my transfer to Metro Health Hospital Assisted Breathing Center, I have been treated with such compassion. I am paralyzed and communicating has been difficult. You have been there trying to help me be more involved. The best gift you have given me to help me speak to friends and family has been the computer you provided me. My friends and family have to travel to visit me and the computer has made it much easier to just stay in touch. It has been a God send, and I thank you so very much.
Check here for more information about our Quality of Life program
Director, Quality of Life Grants
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