Back in April, I met Adrienne Lauer from Nova Southeastern University at the American Occupational Therapy Association (AOTA) conference in Philadelphia, PA. Adrienne was very kind when she approached the Reeve Foundation's Paralysis Resource Center booth.

She came up to say thank you for a recent Quality of Life Grant Nova had received to help SCI patients use iPads.

Here's an update about the grant:

The department, which is a part of NSU’s College of Allied Health and Nursing, is using a $13,000 grant from the Christopher & Dana Reeve Foundation to purchase 20 iPads to treat those individuals.

Because spinal cord injury victims have very limited mobility, using a desktop computer or laptop can be difficult for them. NSU researchers in occupational therapy believe that the iPad, with its lightweight, portability characteristics, as well as its touch screen, will help patients have greater access to the Internet, applications, social media outlets, music, games, GPS, and other functions.

Additionally, the iPad will make it much easier for them to read books and newspapers, which they would not have to pick up anymore.

Read the rest.

More about another grantee I met at AOTA.

Janelle

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We devote a lot of time here helping others cope and coping with bad news ourselves. Here is a letter we got recently:

To Whom It May Concern,

In 2006, my long time college friend had been body surfing waves in his home town when along came a rogue wave that crashed his body to the sand and severed his spinal column. It was unthinkable and frightening for all of us to realize this very vital man was going to be a quadriplegic for the rest of his life at 41.

I called your phone number and talked with a lovely woman at the time who gave me the reassurance that she would send me books and information to help me understand his new world and how he could live a vibrant life.

Sadly, by the time the package arrived, my friend had already passed away from further complications to his condition.

I regret not sending these back to you sooner, but I felt somehow that if I kept this box that he was still here. I realize 5 years later I am ready to let go of this box and let someone else benefit from the information.

I want to thank you again for having such wonderful supportive people to answer questions via the phone.

I hope you will forgive me for this lengthy delay.

Kind regards.

This person called the Paralysis Resource Center (800-539-7309). We get a ton of calls from family and friends.
We have a special section for people dealing with a new injury. 

Rob

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How funny is it when someone writes to you thanking you for letting them run 26.2 miles!

Leigh:

I wanted to thank you for everything you did that made this such an awesome experience. You covered all the bases and made it real easy. It has been a crazy week. All the preperation and then the big day and I cannot believe it's all over.

Today, I looked at the clock remebering where I was last Sunday at this time and had fun reliving the coolest day ever.

I'm hoping you will keep me in mind for next year. I am already tweaking my fundraising and training stratgegies and if I get the opportunity, I will improve on both.

Ned Norton

Norton (pictured here) ran for Team Reeve in last November's ING New York City Marathon. He raised over $4,000.00.

He is doing all this from his Warriors Gym (Home of the Warriors on Wheels) in Albany, NY. Norton is a former Olympic trainer and body builder. The thing about him is that he is not injured. He does not have any close freinds or family that are injured. Norton was just working at the gym and saw first hand what a certain level of fitness brought to people living with disabilities both for their mind and body.

Get more information and fitness and rehab in the Paralysis Resource Center.

Find out more about Warriors on Wheels @ 518-427-1462.

Join Team Reeve. It's not just about marathons, so don't be scared off!

Leigh A. Alspach
Manager, Team Reeve®
Christopher & Dana Reeve Foundation
 

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The Reeve Foundation Information Specialist (IS) team received an inquiry from a man who has been a quadriplegic for 16 years. His power wheelchair was 11-years-old and no longer worked. Medicaid guidelines did not allow for repairs or replacement because the man was in a nursing home.

Desperate so he can get out of bed and move about independently, he contacted the Reeve Foundation three times over a five month period. An IS contacted numerous agencies in his home state but without any luck. This week the IS member received a call that a chair was available but needed to be retrieved ASAP before it was listed in the general inventory.

Knowing that it might be a long time before a similar chair became available the IS located a taxi company that was willing to deliver the wheelchair to the man. An anonymous donor covered the cost of the taxi and its delivery.

Talk to an Information Specialist (Mon.-Fri., 9 am to 5 pm ET) at 800-539-7309.
International callers use 973-467-8270.

Email an information specialist.

Bernadette F. Mauro
Director, Information and Resource Services
Christopher & Dana Reeve Foundation

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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 or Spanish) 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.

Bernadette
Director, Information and Resources Services