The day I had been dreading came in the spring of 2000, about three years after my mother's diagnosis with Alzheimer's disease. She sat in my house and tearfully announced that she did not know who I was or where she was. When I introduced myself, she apologized, saying she must have been a terrible mother. It took me a moment to follow her line of thought: Because she had no memory of me, she assumed that we were estranged and that she was seeing me for the first time in decades. But she was still Mom -- sweet-faced, gentle under stress, articulate even in her confusion.
That was her last visit to California. By the time I flew east several months later, my mother was barely recognizable. Her face fixed in a scowl, she shuffled aimlessly around the house she had lived in for 52 years, occasionally muttering in a harsh monotone. Only by giving her a potent anti-psychotic drug was my father, her husband of 60 years, able to keep her from walking out the door to "go home."
Clearly, the drug Aricept, which she had taken to slow the disease's progression -- and the alternative treatments and top doctors my sister, Lynn, had tirelessly unearthed -- hadn't kept Mom from reaching this phase within four years of diagnosis. Two months later, the Alzheimer's specialist would tell my sister and father that he had nothing left to throw at the illness. Except ...
He had been participating in the U.S. trials of a drug used in Europe. Studies had found real results. The Food and Drug Administration hadn't yet approved the drug for sale here, but it was possible to buy it legally through certain channels with a prescription. He couldn't write one, though. It would be unethical for a doctor involved in the research.
To Lynn, words like that are a mild obstacle to be scaled -- or smashed through, if necessary. She found another doctor to write the prescription and located an overseas pharmacy to fill it. In April 2001 my mother took her first doses of memantine.
By that time, she was incontinent and couldn't feed herself. She seldom walked but would sit and stare for hours, except for increasingly angry outbursts. At my father's birthday party two weeks earlier, she had sat, slumped and silent, until my brother, sitting next to her, made some innocuous comment she didn't like. Then she stabbed his hand, hard, with her fork.
Within two days of the first memantine dose, the family noticed that Mom was far more alert and was able to accomplish everyday tasks such as brushing her teeth. Three weeks later, she dressed herself in evening clothes and attended a big black-tie bash to celebrate Lynn's 50th birthday. Mom sat at the table and ate dinner, by herself, with utensils. She danced much of the night away with Dad, one of their favorite activities dating back to their teenage years. She smiled and socialized.
"I don't think anyone realized there was anything wrong with her," Lynn said. "That was the most amazing miracle -- and the best birthday present I could have gotten."
I'm glad Lynn got her miracle, but memantine is no miracle drug. It has not brought my mother back to her intelligent, thoughtful self, but it has helped, and for this we are grateful.
Memantine does not cure Alzheimer's disease, return patients to normal or put them in remission, and it doesn't work for everyone.
But for many patients, the drug has a measurable and sometimes profound effect, restoring for a time mental functions that had seemed lost forever and easing the exhausting workload for caregivers. It can give people a long step back from the disease's otherwise inexorable march toward disability and death.
The drug works by blocking the brain chemical glutamate, which in excess amounts allows too much calcium to enter cells, causing cell disruption and cell death. Memantine has been used in Germany for 15 years, first to treat Parkinson's disease and later glaucoma, AIDS- related neuropathy and Alzheimer's. The European Union approved its use to treat Alzheimer's in May 2002.
Memantine slows the progression of moderate to severe Alzheimer's, according to a study published in the New England Journal of Medicine this year. Another study, not yet peer reviewed, found that patients who took it as part of a combination therapy with Aricept regained abilities they had lost. None of the studies has found serious side effects.
So why is the drug's availability so limited in the U.S.?
Forest Laboratories gained the U.S. rights to market memantine in 2000. Since then, the company has been going through the exacting process of filling out forms, following procedures and conducting experimental trials the FDA requires. Delayed by one problem or another, Forest filed its full application in December. The FDA is expected to respond -- with approval, rejection or a request for more information -- by the end of the year. The earliest Forest expects the drug to be on the market is the first half of 2004.