Central PA SCI Networking

May 16, 2007
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Minutes from Spinal Cord Injury Support Group, May 16, 2007


Members present: Shelly White and Todd, Brandon Coleman and parents Jack and Anita, Brian Hoffert and parents Carole and Bob and friend Vicki, Marcia Morgan, Jace Hall, Ed and Liz Clabaugh and Debbie, Claudia, Cindy Hulse, Nancy Ehrlich

    Shelly gave an overview of the Peer Mentor Program including the new manual compiled from various resources by Liz, Shelly and everyone who sent in their suggestions. The manual will be constantly revised as the Peer Mentor program evolves. The Peer Mentor training will be in 2 parts, 1)the mentor training and 2)the Hershey Med. Center volunteer training. Cindy Hulse will continue to be the contact coordinator for patients and 2 head nurses will have a list of mentors to call. We will meet with both nurses in the future.

    The Peer Mentor Grant has been submitted so everyone say a prayer!

    Liz and Ed Clabaugh shared a wonderful story that was published in Wild Onion Magazine. The poem was written through Ed’s eyes about his life and accident and is a beautiful tribute to his loving family. Also, Ed is now breathing about 12 hours off the vent/day with the help of his phrenic nerve pace maker. And if that’s not enough, he is doing 7 miles on his Restorative Therapy RT 300 machine. Amazing Ed!!! Thank you -you truly are our inspiration!

    Brian Hoffert and his parents Carole and Bob and their friend Vicki came to their first group meeting since leaving the hospital. Brian would really like to get a standing frame but his insurance won’t cover it. We collectively decided he needs to contact OVR.  Brandon and his parents Jack and Anita also shared some of their experiences with OVR.  Brian also continues to have a considerable amount of pain. If anyone can help out with ideas please do. Tramadol or Ultracet was suggested for analgesia. There is physical therapy that can sometimes help as well.

    Marcia Morgan has agreed to be our coordinator for our “Outreach” program that sends cards and remembrances to those in the group who are ill, hospitalized, et. Thanks Marcia. Marcia was my mentor and I know she is very good at this. Speaking of which, Jean is still recovering from her stoke and she can use a card or note of support from us. It’s been a pretty tough time. We did all sign a paper at tonight’s meeting that Cindy will send in a card. It sure would be great to have her back with us.

    The benefits of Dr. McDonald’s Restorative Therapy was discussed.

    Brandon explained the pros and cons of Botox therapy for tone issues (decreasing the stronger muscles to allow the weaker muscles to develop) explaining that it does where off in 4 months.

    Jase highly recommended the book “Spinal Network” which contains information about many therapies. Cindy thought it’s was now about $29.95. Jase also talked about the electrode leotard invented by Jerald Petrouskie from Ervine, CA. It stimulates mobility allowing the wearer to walk, maybe with a walker, but walk none the less.

    We will continue to meet at HMC for June and July. Because of a joint venture between HMC and Select Medical, which is part of Kessler, a new rehab hospital is being built. In the meantime, the in-patients will go to polyclinic. Where our meetings will be at that time is still a mystery. Possibly Vine St. Rehab or the UPC building at HMC.

    Cat Share A Ride is a great way to get around for only $1.00 per ride. You have to sign up for it. We will have to get more info about this.