Readers' Forum
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Dear Readers:
My daughter, Carmen, is a 6-year-old who is very outgoing, independent, and persistent. She likes to play house, swim and tease her little brother. Carmen also has spastic cerebral palsy. For Carmen, this means her arms and legs are very tight and her trunk is very loose. She couldn't sit up on her own much less stand or walk. In March of 1996, I read an article about Dr. Bernard Brucker, who was working with people who have brain injuries such as stroke victims, people with spinal cord injury, and people with cerebral palsy. I did some research and decided this could be helpful to Carmen so in March of 1997, we went to Miami for three weeks.
On the first day, Dr. Brucker did an evaluation of Carmen and determined it would be most beneficial to work with trunk muscles first. In this type of Bio-feedback, electrodes are attached to patient's muscles. The electrode reads the amount of signal that is reaching the muscle from the brain. The electrodes give this information to a computer and Carmen was able to see it on the screen. She was able to see that she was increasing the amount of signal; and by doing this activated brain cells that she hadn't been using before. These cells could do the job of the damaged cells. In the three weeks Carmen went from 3-14% of the normal amount of signals reaching her trunk muscles, to 30-50% of normal! One only needs about 25% to be functional. Now that Carmen has learned this, she will never lose it; it is like riding a bicycle- your brain never forgets how to do it. We are very excited about Carmen's progress. Dr. Brucker feels Carmen may be able to walk if we continue the biofeedback and work on other areas.
The only down-side to all of this is that there are only 5 places in the United States that can do this. I am trying to find ways to bring something closer to New England. If you are interested in more information, Parent to Parent of Vermont has articles that they can copy for you or you can call me at 773-2893.
Gail Santana
Letter #2:
Dear P2P,
Just received your newsletter which, once again, is wonderful.
I'm not sure if this kind of info might fit into the newsletter but I wanted tell you about a family (albeit New Yorkers) and the work they are doing to promote the care and treatment of children with hydrocephalus. Jeff & Debra Jaurigue have a child, Madison, born with hydrocephalus who has had to undergo a number of shunt operations. They have established Madi's Foundation and have begun to solicit monies which will go to help families during the time of hospitalization as well as fund research which I am doing to devise new techniques for treatment of this problem. Debra has scheduled and arranged a dinner/dance/ silent auction in Lake Placid... with plans for at least 2 more in Rutland and Burlington. Her energy level is beyond belief and her dedication is unwavering. My only regret is that I can't call her a Vermonter.
Does Parent to Parent "wander" into upstate NY at all? Would this info possibly go into your newsletter?
Keep up the good work!
Steven Wald, M.D.
P.S. Debra & Jeff have moved back to Vermont! To send a donation: FAHC-Madi's Fund, Development Office, 111 Colchester Ave., Burlington, VT 05401 or for info write: Madi's Fund, 3 Emeritus St., Rutland, VT 05701 or email: madifund@aol.com) The dinner dance in Rutland & Lake Placid was a success, and Burlington's is February 26, 1999 at 6:30pm at the Sheraton. $40 per person. They've raised over $21,000 this year!