Alan Hoffman says nilotinib has changed his life. Just weeks after he started taking the drug in a clinical trial, he began to feel himself recovering from his Parkinson鈥檚 disease.
The retired professor of social science first started to show the signs of Parkinson鈥檚 in 1997. Over the years, his symptoms worsened. 鈥淚 couldn鈥檛 get out of bed without my wife,鈥� Hoffman says.
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Once a prolific reader, devouring four or five books a week, Hoffman found himself unable to keep his attention on even a short magazine article. His body became increasingly rigid, and he started to lose his sense of balance. 鈥淚 fell a lot,鈥� he says. And it affected his social life. The disorder was such a struggle, Hoffman says he considered taking his own life.
He tried a range of medications, which eased his symptoms to varying degrees. In 2008, he had surgery to implant an electrode into his brain. The deep brain stimulation that followed helped with the rigidity, he says. But deep brain stimulation doesn鈥檛 offer a cure 鈥� the brain cells continue to die.
So Hoffman agreed to join a six-month clinical trial of nilotinib 鈥� a drug typically used to treat leukaemia. Nilotinib blocks a protein that interferes with lysosomes 鈥� cell structures that destroy harmful proteins. Researchers behind the trial think that nilotinib can free up lysosomes to do a better job of clearing out proteins associated with Parkinson鈥檚 disease. (For a full report on the effect of the drug see 鈥淧eople with Parkinson鈥檚 walk again after promising drug trial鈥�.)
Freedom to speak
鈥淚 didn鈥檛 notice any changes at first,鈥� says Hoffman, 鈥渂ut my friends started telling me that my speech was clearer.鈥�
鈥淏y five weeks I really noticed the difference,鈥� he says. 鈥淚 could start to do things like make the bed, or do the dishes. I read a book for the first time in years.鈥� Hoffman鈥檚 balance also improved, and he fell less often.
He also found it easier to move around. In one test, doctors would record how long it took Hoffman to get up from his chair, take a short walk, and return to his seat. 鈥淭he first time, it took 28 seconds,鈥� says Hoffman. 鈥淭he second time, it took 14 seconds. I kept breaking my own records.鈥�
His cognition improved, too 鈥� his performance on a gold-standard test improved throughout the trial. 鈥淚 was at 100, and then I began going up, to 110, 120, 124, until I hit a perfect score,鈥� he says.
Alan thinks he has started to deteriorate since he stopped taking the drug at the end of the trial. 鈥淚 haven鈥檛 taken it for two months 鈥� that鈥檚 a big area of contention right now.鈥� His wife, Nancy, says she is hopeful that the drug鈥檚 manufacturer Novartis will offer them further doses. 鈥淚f not, we will find a way to pay for it,鈥� she says.
鈥淭here hasn鈥檛 been a lot of hope for a cure for Parkinson鈥檚 in recent years,鈥� she says. 鈥淚f what happened to the 12 people in the trial can happen again in others, nilotinib has the possibility of making life so much easier for people with Parkinson鈥檚.鈥�
Image: Amelie-Benoist/BSIP/SPL
