June 23, 2015

Allen Weinstein and Our Parkinson's Support Group

At our Parkinson's support group meeting last Friday, one of our members brought in a copy of the obituary from that morning's Washington Post for Allen Weinstein, a devoted member of our group. He had died on June 18 at a nursing home in Gaithersburg, MD.

The Post's obituary, and the equally laudatory one in the New York Times, describe his many accomplishments. He is perhaps best known as the author of Perjury: the Hiss-Chambers Case. Historian Arthur Schlesinger called it "the most objective and convincing account we have of the most dramatic court case of the century."

Weinstein was an academic with professorships at Smith College, Georgetown University, and Boston University. He founded the Center for Democracy in Washington. His work there prompted the Los Angeles Times to describe his group as "the advance team in America" for Boris Yeltsin, the Russian reformist leader. That team helped establish representative governments in Eastern Europe as the Soviet Union collapsed. The Center monitored elections in several countries, including the Philippines, Panama, and Nicaragua.

In 2004, President George W. Bush nominated him to head the National Archives and Records Administration. He resigned from that position at the end of 2008 as his health declined from Parkinson's disease (PD).

Allen and Parkinson's and our Support Group
I joined the group shortly after being diagnosed with PD in the fall of 2009. Allen joined about a year later.

Our group comprises mostly older men like me, many of whom have had interesting and fairly high-level careers (not too surprising since we meet in far Northwest DC). But that's not what we talk about. Nor do we talk much about doctors, pills, or ailments. The group is led by professional group therapist Leon Paparella, who has lived with PD for 28 years. Put Leon's name in the search box at right to find an interview I did with him, and several "guest posts" from him.

Leon makes it clear in our meetings that he wants us to share our feelings, fears, and inner lives, not our outward signs of illness. This "open sharing" is a new experience for most group members. I adapted easily after years attending AA meetings almost every day.

Since this kind of sharing rarely happens in everyday life, new members are typically a bit uncomfortable at first. Soon, most come to find this type of communication invaluable. People with progressive diseases like Parkinson's need to talk with others -- people who are not emotionally entangled, as family members and close friends would be. We need people who listen without judging as we talk about our struggles with the disease, our relationships with caregiving spouses, and our fears about the future.

Within a few weeks, our meetings usually become central in new members' lives. I'm amazed by the efforts some members exert just to attend our meetings.

Allen often described how important our meetings were to him. I remember his comments about his earlier life, when he had been completely absorbed in his career... with little interest in sharing feelings or helping others with their struggles. Now, thanks to PD and our meetings, he had discovered that our honest, personal connections made life meaningful and rewarding.

Allen's Parkinson's made it difficult for him to communicate. About 90 percent of people with PD will experience some difficulties with speech. Usually the voice becomes much quieter. Sometimes it seems like we spend half our meeting time asking our fellow members to speak up. Allen had a particularly difficult time making himself heard.

When he spoke, we all strained to hear him. We knew he cared deeply about us and had insightful things to say. He also had a wry sense of humor.

In the course of our sharing, Allen and I realized we'd met about 30 years earlier. His first wife Diane was the daughter of Mike and Doris Gilbert. Back in 1977, therapy, convinced me I needed to be open about my homosexuality. But I had to delay my "coming out" until  some other issues were resolved. During this time, to explore gay life in Washington, I invented a weekly bridge game that gave me an evening out each week.

I soon met Mike Gilbert, who was also married and also had one night a week out in the gay bars. But Mike's night out had the support of his wife Doris, who knew Mike was bisexual early in their marriage. Doris was a remarkable woman. Not only did she accept Mike's weekly "boys' night out," but she also accepted his occasional solo vacations in Provincetown, the gay summer Mecca.

Doris and Mike enjoyed a strong and loving relationship. Their adult children knew what was going on. Doris loved to include Mike's gay friends at their parties. I came to know and love Doris. It was at the Gilbert's cocktail parties that I met Allen.

Like everyone else, Allen adored Doris. After his marriage with Diane disintegrated, he maintained his friendship with Doris. After Mike's death, Doris moved to the Boston area to be near Diane and her new family. Allen stayed in close contact with Doris. Because of their connection, I was able to talk with Doris several times before she died several years ago.

Allen and I had some good times together outside of the support group meetings. But the progression of his PD led him to the Gaithersburg nursing home. Since I limit my driving these days to the my own neighborhood, we lost contact.

 I will treasure our friendship.

I told Leon today about my plans to write this post. Leon remembered that Allen had given us copies of a short piece he had written. Fortunately Leon had kept it, and brought it over to the house tonight. The piece describes Allen's reaction to an historic event that occurred when he was eight years old. I was 15 at the time, and responded similarly but in a very different setting.

Unlike Allen's Perjury, which weighs in at 766 pages, this piece is two pages long. I'll share it tomorrow.

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