PSP: SOME ANSWERS( continued)
Two other approaches to slowing the progression of PSP have entered clinical trials. One gives antibodies designed to attack the abnormal tau protein as if it were an invading virus or bacterium. There are two such trials, sponsored by the companies Bristol-Myers Squibb and AbbVie. Another uses a version of the cancer drug Taxol to help maintain the brain cells’ inner skeletons, which break down in PSP.
Two current, small, preliminary trials use existing drugs that are marketed for other diseases. One study administers Salsalate, a nonsteroidal anti-inflammatory drug, which may prevent the tau protein from aggregating via a mechanism unrelated to its anti-inflammatory effect. Another tests the drug methylene blue or LMTX in Alzheimer’ s disease, hoping it will also be useful in PSP.
Two drugs that reduce the tendency of tau protein to aggregate by altering the ability of phosphate molecules to attach to it will enter trials in the next year or two. The two drug companies involved are Asceneuron and Merck. Fortunately for PSP sufferers, drug companies have started to act on the realization that a prevention or disease-slowing treatment for PSP, where the market is tiny, could also work in Alzheimer’ s disease, where the market is huge.
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Is tube feeding advisable for advanced patients?
For extreme cases of poor swallowing where choking is a definite risk, the placement of a tube through the abdomen into the stomach( called gastrostomy, percutaneous endoscopic gastrostomy, or PEG) may be advised. PEG feeding may allow patients to regain lost weight, avoid hunger, and receive the nourishment they need to fight off other potential complications of PSP. A patient receiving the necessary nutrients and fluids is much happier and stronger overall and will probably find general movement, speech, and thinking easier.
PEG placement may be considered when any of the following occur: a first episode of aspiration pneumonia, small amounts of aspiration with each swallow, significant weight loss from insufficient feeding, or when the prolonged time required for a meal disrupts the operation of the household.
The PEG tube can be inserted with the patient awake but sedated, often as an outpatient procedure. The tube is clamped shut and hidden under the clothes when not in use. The feeding can be managed easily at home by pureeing the family’ s regular food in a blender and injecting it into the tube with what looks like a basting syringe. The skin site where the tube enters requires only a little care that can be provided easily by a family member or even by the patient in some cases. If the need for tube feeding abates( as through a new medication, for example), normal oral feeding can be resumed, and the tube can be kept as a backup or else removed.
One potential downside of tube feedings for some patients is a loss of feeling“ whole” or part of humanity. The issue of how a feeding tube will affect a patient’ s quality of life must be considered carefully by the family, physician, and if possible, the patient, and sometimes ethical or spiritual advisors. Some patients in the advanced stages of PSP may feel that their quality of life is so poor that prolonging that life by having a PEG installed is not what they want. It’ s important to note that some nursing homes will advise PEG placement because it reduces the personnel time needed to feed the patients and because third-party payers often will pay an additional fee for tube feeding but not for the time-consuming task of hand feeding a patient by mouth.