Where to find the help--the answers for adults with cerebral palsy who slip through the cracks of our current care system?
As in the instance of polio, the real answer," says Murray Goldstein, 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."
It is understandably difficult to try to find a cure for as many different types of causes as we have identified for cerebral palsy, but as Goldstein points out, it is also improbable that there will ever be a single cure for the many and varied types of cancer either.
This brings us back to the issue of orthotic management. Possibly we might explore new applications for existing orthoses or develop new ones, but again Goldstein explains that orthotics is an area where there has been extraordinarily little research, and most attempts are essentially trial-and-error, driven by bioengineers rather than orthotists.
"We've got to remember the primary reasons for an orthosis to begin with: (a) to protect, such as stabilizing a fracture during healing; (b) to prevent deformity, such as stretching braces worn while the person sleeps, to help prevent muscle contractures; and (c) to improvefunction--the most common application."
A person who attempts to walk with a deformed body part necessarily uses a tremendous amount of energy to ambulate, Goldstein explains. This is a new area of research where new information is only now beginning to be collected and understood.
A multitude of orthoses is already available, many still in the hands of bioengineers trying to improve them. But there will always be a place for a new orthosis that better serves the four requirements listed above.
The continuing challenge to the orthotist is going to be the selection of the appropriate device, which at best is a means to an end rather than the end itself, notes Goldstein. Today's orthoses are very specialized, and should be chosen with care to ensure that the orthotist is using the right intervention for that particular dysfunction, Goldstein reminds us. "That's the key issue. The second is to periodically evaluate whether it is doing its job.
"Through appropriate intervention and lifestyle, it's very important to maintain the function that you've got--while also superimposing an attempt to improve function. The Number One rule is simply 'Do NOT Go Downhill!'"
Can such patients hope to improve?
"Much is dependent on a lot of variables but we can all do better. You can cook better, you can run better, you can read better, you can dance better--but it means that you've got to work at it. Likewise for the person with cerebral palsy: They can walk better and they can breathe better--but they've got to work at it."
Janet Lord, MD, Berkeley, California, advises orthotists to be careful to employ stronger materials as their patient's age. Some of the flexible braces that work very nicely for children break in the face of adults' weight and activity levels.
Lord also observes that when children get to be teenagers, they often reject their braces "for a lot of teenage-type reasons--they don't look nice, the other kids don't have them. At about age 25, that goes away. If the brace helps them walk, they're a lot more willing to take that back again. So it is worth revisiting patients somewhere in their mid-20s because their psychology has changed. And that's worth looking at."
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| Joyce M. Engel, PhD, OT, University of Washington School of Medicine |
Joyce Engel, PhD, OT, University of Washington School of Medicine, who is studying the pain in people with disabilities, advises orthotists to be especially aware of 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."
Even just giving patients Tylenol® or a modality application such as heat might relieve some pain before the person is fit with a device, Engel points out--which might then relieve muscle tension or any kind of postural guarding that the person does, thus helping to obtain a better fit.
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| Carl Gunderson, MD, formerly with Walter Reed Army Medical Center |
Deputy Director of the United Cerebral Palsy Research and Education Foundation Carl H. Gunderson, 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:
- Try not to do any harm.
- Try to do some good.
- If what you're doing works, keep doing it.
- If what you're doing doesn't work, try something else.
- Avoid surgery when possible.
"I don't know that you'll ever find them in print," Gunderson laughs, "but those rules are basically pretty good advice. I have seen more medical mishaps from folks who didn't follow these common-sense rules than I have from any overt mistakes that people have made.
"Sometimes it's simply that the science is important, yes--but every individual is still his own biological system. If it works, it works."
