Therapy is most effective when it addresses an individual’s passion
By Ken Aidekman
Paul West is a professor of English and comparative literature and a prodigious writer of both fiction and non-fiction books. His entire life revolves around words. But, in 2003 he suffered a massive stroke that left him with global aphasia, a condition that rendered him unable to understand words or produce them. His wife, Diane Ackerson, also an author and poet, tells the story of West’s bumpy road to recovery in her book “One Hundred Names for Love.”
Upon his emergence from critical care, West was faced with the arduous task of regaining his communication skills. Initially, he made reasonable progress, but after a few months of both physical and speech therapy he reached a plateau. Ackerson saw her husband become increasingly frustrated with his failure to achieve more advanced goals. Although his speech therapist asked questions in simple English, try as he might, West could not find the appropriate words to answer her. When he did finally respond, his language frequently included complex metaphors and abstruse literary references. Such answers were lost on the therapist, but Ackerson realized she could parse out her husband’s meanings, albeit with considerable effort.
At this point Ackerson personally took over West’s rehabilitation and re-directed it toward his strengths. She incorporated his extensive knowledge of literature and obscure vocabulary. If he could not call up the exact answer, he was encouraged to get his meaning across utilizing complex word association and phrases from deep in his literary memory. The couple played word games like Dingbats and Mad Libs. They used “immersion therapy” to swamp West with language. When they were too tired to talk, they sang together and exercised together. And when it was all too much they collapsed and fell asleep. Upon waking they would repeat the process all over again.
It took several years, but West’s rehabilitation was a resounding success. He even wrote and published his own book about his experience titled “A Stroke of Genius.” The lesson here is that finding the most effective therapeutic approach involves playing to an individual’s strengths. Success or failure in rehabilitating a person with neurological damage may just hinge on appealing to that individual’s unique “passion.”
West did not have Parkinson’s, but the story of his rehabilitation still has implications for those who do. There are therapies that address nearly every symptom of PD. Speech therapy helps with poor vocalization and impaired swallowing. Dance therapy helps with balance and focused movement. Tai Chi promotes body awareness and balance. Vigorous cycling, whether stationary or while riding a bicycle, helps with range of motion and may actually provide some relief from symptoms in general. Exercise and stretching helps keep muscles and joints flexible and strong.
Parkinson’s therapy is a rapidly developing field. Sometimes it seems there are as many different therapies as there are medications. How do you go about finding out which therapy works best for you? Is there a therapeutic mode that fits in with your individual “passion”? Who do you talk to about putting together your own therapeutic action plan?
Feedback regarding these questions is valuable. Your experience provides an important guide for those who are new to the game and less knowledgeable. What can you share about PD therapies with others that will help them cope?
Ken Aidekman is an investment advisor in Chatham, NJ. He led the Parkinson’s Action Network’s (PAN) efforts in New Jersey to pass the Morris K. Udall Law for Parkinson’s Research and Education. At PAN’s first advocacy forum in 1994 he met Margot Zobel who was in the process of founding the Parkinson’s Unity Walk. Mr. Aidekman helped put together the Walk and became the organization’s first Chair.