When Mom was first diagnosed (with PSP) the neurologist told us she might live for 6 months or 6 years. It is so indefinite.
She had been showing the slow progression of the disease for about two years by her ever-worsening eyesight, handwriting, etc. She was also falling a lot and experiencing the fixed vertical eye-movement symptoms normally associated with PSP.
That was December 1995.
She had problems with eating. Since her vertical gaze was affected, she needed help to eat a lot of her meals. We hand fed her.
Later her food was pureed to a smooth consistency - (she called it "Blenderizing" her food). Even later we made nutritious milkshakes that contained eggs, milk, chocolate Boost canned nutrition drink, and honey. Other people have had other recipes, but Mom liked this one best. We also added vegetable laxative powder mixed in orange juice or water to aid her elimination.
When the choking progressed to the point she was losing lots of weight and dehydrating (it was spring/early summer of 1999), she decided that she did want the feeding tube to make her life easier - which it did. She no longer had to suffer in order to receive nutrition and hydration, and although the doctor told us "nothing by mouth", she still was able to enjoy flavors - bits of fruit or chocolate to suck on, taste on her tongue, etc. She regained some weight initially, as she was being fed 7 cans of Jevity per day - one every three or four hours during the day, and 3 cans in a pump-fed bag overnight.
Over the course of a year and a few months, her body started absorbing less and less food, and we cut back. She became uncomfortable or could not accept the food, first quiting the overnight feedings (we normally eat our meals during the day and allow the digestive system to rest overnight, so this was natural), and then just spacing the feedings farther apart depending on the residual contents of the stomach at feeding times. (This merely means, before you begin a tube feeding, you check to see that the stomach is empty and ready for more food. If it contains food that comes back up the tube, the stomach still contains part of the last meal, and needs more time to digest what was already given.)
Mom had her feeding tube from June 1999 to September 2000, and was still taking 3 cans of Jevity per day, plus a cup of water with each feeding, right up to her last day. She was also filling her catheter bag with approximately 1600 to 2000 mL of urine each 24 hours. The amount of output is important - there seems to come a point at which the bladder muscles are affected - and the PWPSP is unable to release the urine stream, so one needs to be aware. I was told that if 8 hours pass, without passing some urine, one should be concerned.
