<b><i>Where to find the help--the answers for adults with\r\ncerebral palsy who slip through the cracks of our current care\r\nsystem?<\/i><\/b>\r\n\r\n<img style="float: right;" src="https:\/\/opedge.com\/Content\/OldArticles\/images\/2005-09_03\/p30-1b.jpg" hspace="4" vspace="4" \/>\r\n\r\nAs in the instance of polio, the real answer," says <b>Murray Goldstein<\/b>, DO, MPH, medical director for United Cerebral Palsy, "wasn't better iron lungs, but preventing it in the first place. So we deal with both primary and secondary prevention of cerebral palsy: primary prevention gets rid of the factor that caused the brain damage in the first place, and then we ensure that it doesn't occur again. That's the ultimate answer. We've got a long way to go, but we're slowly nibbling away at it."\r\n\r\nIt is understandably difficult to try to find a cure for as many\r\ndifferent types of causes as we have identified for cerebral palsy,\r\nbut as Goldstein points out, it is also improbable that there will\r\never be a single cure for the many and varied types of cancer\r\neither.\r\n\r\nThis brings us back to the issue of orthotic management.\r\nPossibly we might explore new applications for existing orthoses or\r\ndevelop new ones, but again Goldstein explains that orthotics is an\r\narea where there has been extraordinarily little research, and most\r\nattempts are essentially trial-and-error, driven by bioengineers\r\nrather than orthotists.\r\n\r\n"We've got to remember the primary reasons for an orthosis to\r\nbegin with: (a) <b>to protect<\/b>, such as stabilizing a\r\nfracture during healing; (b) <b>to prevent deformity<\/b>,\r\nsuch as stretching braces worn while the person sleeps, to help\r\nprevent muscle contractures; and (c) <b>to\r\nimprove<\/b><b>function<\/b>--the most common\r\napplication."\r\n\r\nA person who attempts to walk with a deformed body part\r\nnecessarily uses a tremendous amount of energy to ambulate,\r\nGoldstein explains. This is a new area of research where new\r\ninformation is only now beginning to be collected and\r\nunderstood.\r\n\r\nA multitude of orthoses is already available, many still in the\r\nhands of bioengineers trying to improve them. But there will always\r\nbe a place for a new orthosis that better serves the four\r\nrequirements listed above.\r\n\r\nThe continuing challenge to the orthotist is going to be the\r\nselection of the appropriate device, which at best is a means to an\r\nend rather than the end itself, notes Goldstein. Today's orthoses\r\nare very specialized, and should be chosen with care to ensure that\r\nthe orthotist is using the right intervention for that particular\r\ndysfunction, Goldstein reminds us. "That's the key issue. The\r\nsecond is to periodically evaluate whether it is doing its job.\r\n\r\n"Through appropriate intervention and lifestyle, it's very\r\nimportant to maintain the function that you've got--while also\r\nsuperimposing an attempt to improve function. The Number One rule\r\nis simply 'Do NOT Go Downhill!'"\r\n\r\nCan such patients hope to improve?\r\n\r\n"Much is dependent on a lot of variables but we can all do\r\nbetter. You can cook better, you can run better, you can read\r\nbetter, you can dance better--but it means that you've got to work\r\nat it. Likewise for the person with cerebral palsy: They can walk\r\nbetter and they can breathe better--but they've got to work at\r\nit."\r\n\r\n<b>Janet Lord<\/b>, MD, Berkeley, California, advises\r\northotists to be careful to employ stronger materials as their\r\npatient's age. Some of the flexible braces that work very nicely\r\nfor children break in the face of adults' weight and activity\r\nlevels.\r\n\r\nLord also observes that when children get to be teenagers, they\r\noften reject their braces "for a lot of teenage-type reasons--they\r\ndon't look nice, the other kids don't have them. At about age 25,\r\nthat goes away. If the brace helps them walk, they're a lot more\r\nwilling to take that back again. So it is worth revisiting patients\r\nsomewhere in their mid-20s because their psychology has changed.\r\nAnd that's worth looking at."\r\n<table class="clsTableCaption" style="float: right; width: 49.6883%;">\r\n<tbody>\r\n<tr>\r\n<td style="width: 100%;"><img src="https:\/\/opedge.com\/Content\/OldArticles\/images\/2005-09_03\/p32-1b.jpg" alt="Joyce M. Engel, PhD, OT, University of Washington School of Medicine" \/><\/td>\r\n<\/tr>\r\n<tr>\r\n<td style="width: 100%;">Joyce M. Engel, PhD, OT, University of Washington School of Medicine<\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\n<b>Joyce Engel<\/b>, PhD, OT, University of Washington School of Medicine, who is studying the pain in people with disabilities, advises orthotists to be especially aware\r\nof its impact on their patients. "Ask if the patient is having pain overall, what makes it worse, what helps, and then specifically ask if the person has pain with donning and doffing a prosthesis or orthosis--and then look at what modifications could be done."\r\n\r\nEven just giving patients Tylenol\u00ae or a modality\r\napplication such as heat might relieve some pain before the person\r\nis fit with a device, Engel points out--which might then relieve\r\nmuscle tension or any kind of postural guarding that the person\r\ndoes, thus helping to obtain a better fit.\r\n<table class="clsTableCaption" style="float: right; width: 33.9512%;">\r\n<tbody>\r\n<tr>\r\n<td style="width: 100%;"><img src="https:\/\/opedge.com\/Content\/OldArticles\/images\/2005-09_03\/p25-4.jpg" alt="Carl Gunderson, MD, formerly with Walter Reed Army Medical Center" \/><\/td>\r\n<\/tr>\r\n<tr>\r\n<td style="width: 100%;">Carl Gunderson, MD, formerly with Walter Reed Army Medical Center<\/td>\r\n<\/tr>\r\n<\/tbody>\r\n<\/table>\r\nDeputy Director of the United Cerebral Palsy Research and Education Foundation <b>Carl H. Gunderson<\/b>, MD, formerly chief of Neurology at Walter Reed Army Medical Hospital, cites traditional laws of treatment and therapy attributed to Robert F. Loeb, MD, a celebrated professor of medicine at Columbia University College of Physicians:\r\n<ol>\r\n \t<li>Try not to do any harm.<\/li>\r\n \t<li>Try to do some good.<\/li>\r\n \t<li>If what you're doing works, keep doing it.<\/li>\r\n \t<li>If what you're doing doesn't work, try something else.<\/li>\r\n \t<li>Avoid surgery when possible.<\/li>\r\n<\/ol>\r\n"I don't know that you'll ever find them in print," Gunderson\r\nlaughs, "but those rules are basically pretty good advice. I have\r\nseen more medical mishaps from folks who didn't follow these\r\ncommon-sense rules than I have from any overt mistakes that people\r\nhave made.\r\n\r\n"Sometimes it's simply that the science is important, yes--but\r\nevery individual is still his own biological system. If it works,\r\nit works."