By Linda Thrasybule
The quiet devastation of Alzheimer’s is usually an experience families suffer from behind closed doors. But recently, Libby Embry, 63, shared her battle with the disease in a most unexpected way, tweet by tweet.
“I’m still me,” Embry wrote in a message meant to educate doctors about her condition. “I wanted to be treated with dignity and respect while I can still participate. I want to have a say.”
When Twitter emerged in 2007, its use was to post your daily rant in 140 characters or less. Like its predecessor on the social network frontier, Facebook, Twitter’s popularity has stretched across all kinds of communities to become a sounding board to share, exchange and discuss ideas. In health care, more patient communities are using Twitter as a way to initiate dialogue about a particular disease or voice health concerns to doctors.
On January 25, Albert Einstein College of Medicine of Yeshiva University in the Bronx, along with MDChat, a TweetChat designed exclusively for doctors, and the Alzheimer’s Association, organized its first-ever tweet chat for early stage Alzheimer’s disease patients who have been diagnosed with the disease at a younger age. For the non-initiated, a TweetChat is an organized group of users who hold a conversation via Twitter.
An estimated 5.4 million Americans are living with Alzheimer’s disease. Of those with the disease, about 4 percent are under age 65, according to the Alzheimer’s Association. It is among the top 10 causes of death in the U.S. that cannot be prevented, cured or slowed.
Paul Moniz, director of communications and marketing at Einstein College of Medicine, came up with the idea while brainstorming with Phil Baumann, an R.N. and founder of MDChat and RNChat, a Twitter account set up for doctors and nurses.
“Paul and I had been talking about MDChat and how we could use TweetChat to give people with a condition an opportunity to share their stories,” Baumann said.
Einstein spokesman Moniz, previously a television reporter, recalled working on a series profiling early-stage, younger-onset Alzheimer’s patients.
“What amazed me was that so few people hear from the patients once a diagnosis is made,” he said in an email. “Questions from friends, colleagues, even family members are directed to caregivers–something that is hurtful to patients who are still functioning at a high cognitive level.”
Moniz’s experience working on the series led him to the idea of organizing a TweetChat giving early-stage patients an opportunity to share their frustrations with doctors, nurses and other health care professionals.
Moniz thought it would give doctors a better understanding of how to offer support when giving a diagnosis and information resources to a patient who receives such news.
The Alzheimer’s Association in Chicago agreed to help out and found two patients—Libby Embry and Gwen Richards—willing to participate in the TweetChat.
Baumann kicked off the hour-long chat by having both women tell their story for the first half hour followed by a Q & A session. Participants were told in advance that tweets shared by these women were their words, feelings and experiences, typed by the Alzheimer’s Association team since neither patient knew how to use Twitter.
Despite the limited number of characters per tweet, the chat allowed both women to tell their stories clearly and succinctly. Embry shared her experience receiving her diagnosis, the difficulty of letting family and friends know and the frustration of being excluded in the treatment process.
Embry, a teacher, was 59 years old when she was first diagnosed. “The problems at work were not being able to do the computer work,” she tweeted. “Forgetting meetings and classes. I felt like I could not continue teaching. My colleagues had to do all the work for me. Covering for me.”
Eventually, Embry was forced to retire even though she didn’t want to. “I thought if I could get out from under the stress of teaching I could get my life together,” she tweeted. “I was wrong.”
Embry’s symptoms began to affect her home life. She would get lost and not find her way home. She couldn’t find the hair salon or the grocery store, places that she went to every day. Although she tried to cover it up as best she could, her family began to notice.
After seeing three doctors, she was prescribed medication that has helped her think and speak clearly again. “Within a week, I felt as if someone were slowly pulling cotton out of my head,” she tweeted.
A month after she was diagnosed, Embry contacted the local chapter of the Alzheimer’s Association. “I got more from Alzheimer’s Association than from doctors. My family doctors didn’t know what to do,” she tweeted.
Embry participated in the chat so that family doctors or general practitioners could better understand how to treat the disease. “Most family physicians don’t know about Alzheimer’s and they have a lot of misperceptions,” she said in a phone interview.
Embry also wanted to convey the importance of medication. “Doctors say medication won’t help but they should leave that up to the patient,” she said. “There is no cure for this disease so medication is the answer, even if it works temporarily.”
According to Baumann, the chat received a positive response. “Physicians and nurses who participated were genuinely enthused—and maybe even surprised—at how much they learned from Gwen’s and Libby’s stories through the medium of tweets,” he said.
“All of us have a need to tell our stories in our own way,” Baumann added.
He sees Twitter as a uniquely equipped mechanism for a uniquely human impulse. “Key details come out of that 140 character limit,” he said. “It extracts these little gems and I think it’s the direction we’re heading.”
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