By Alyx Arnett
Mike Dingledine from Ohio, Lisa Ganey from Arizona, Christina “Lilly” Drake from Maryland, and Harold Roettger from Minnesota—these are just a few of the many individuals who have found solace and strength in online support groups for neurostimulators for sleep apnea.
While they each joined support groups for slightly different reasons, they’ve stuck around long after settling in with the therapy for the same: to give back. “We feel like we need to pay it forward by offering our experience to other people since the group was such a big advantage to us,” says Drake, referring to her and her husband, James Drake, 75.
Several Facebook support groups exist that have garnered hundreds to thousands of members: “remedē for Central Sleep Apnea Support Group” for those interested in or with ZOLL Respicardia’s remedē and “Inspire Sleep Apnea Community” and “Inspire Therapy for Sleep Apnea Support Group” for those interested in or with Inspire Medical’s Inspire therapy.
Christina “Lilly” Drake: Wife of remedē Patient
Drake joined the remedē Facebook support group in 2021 on behalf of her husband, for whom she’s a caretaker. An initial sleep study showed James had mixed apnea, and he’d tried CPAP and BiPAP. But after a subsequent study showed James’ sleep apnea was 80% central, Drake reached out to ZOLL Respicardia to see about getting remedē for her husband.
A patient advocate—a volunteer who helps with patient communication—suggested Drake join the Facebook support group while working through the process. “It was just a bountiful wealth of information for me. It helped me make better decisions for my husband,” she says.
For a year, Drake was a silent member, observing the questions and answers. So when her husband received remedē in 2022, they were well-prepared on what to expect, she says. Drake made her first post shortly after: “Perfect time to announce that 6 weeks post device surgery (which went splendid by the way) my husband’s [remedē] was activated and without a hitch and he is now sleeping soundly through the night!!!!! We couldn’t be happier.”
Before remedē, James’ apnea-hypopnea index (AHI) was 51.8 and central AHI was 18.6. Now, they’re 23.8 and 1.2, respectively.
Drake emphasizes that the group is an invaluable resource for both prospective patients and their families. It helped her determine that the device was right for her husband and provided a new perspective on his experience with central sleep apnea. She continues participating “to help others feel more comfortable with the idea of getting this done.”
Mike Dingledine: remedē Patient and Support Group Founder
Dingledine didn’t just join the remedē group; he started it. Dingledine was implanted with remedē in January 2020, and later that year, he asked a ZOLL Respicardia employee if there was a support group he could join.
There weren’t any online support groups then, so several months later, Dingledine launched the remedē for Central Sleep Apnea Support Group on Facebook in early 2021.
Today, the group, which ZOLL Respicardia is not involved in, has 652 members, about 100 of whom have remedē, while most are prospective patients. “They want to understand what it does, how it feels, if you can see it,” he says. “They’re all valid questions that might help them make a decision.”
The group members share the full spectrum of their experiences—the good, the bad, and the ugly. “They’re allowed to do that. They can say what they want, keeping it within reason, obviously,” he says.
Negative posts are most common among patients who are just starting with the device, he says. “They’re in the initial process of making their adjustments, and it may not be what they had expected or hoped for because their body hasn’t acclimated to the stimulation yet,” he says. “They may be experiencing some frustration, and oftentimes they post about that.”
When members share their struggles, Dingledine asks them to provide enough information to help others understand the context. “Say you’re only on your second adjustment,” he suggests. “I’m not saying second out of 10. I’m not saying second out of four. We don’t know how many you will need, but say that you’re early in the process.”
Dingledine also asks members to share a follow-up. “Once you’ve had the next adjustment, or once you’ve had that problem rectified, post that as well. There are people who are in the process, and they’re grasping for this information. They can see, ‘OK, that was taken care of,’” he says, adding that members have been good about sharing both the good and the bad.
Dindledine became a patient ambassador for ZOLL Respicardia after his sleep study came back in August 2021, showing his AHI had gone from 57.6 to 4.3, with zero central events. He now participates in monthly webinars produced by ZOLL Respicardia (he just completed his 50th one) and shared his experience with sleep specialists and cardiologists at SLEEP 2024 by speaking at a ZOLL-sponsored dinner and volunteering at the company’s exhibit hall booth. “I never fail to mention the group,” he says.
Lisa Ganey: Inspire Patient
Ganey sought out online support groups for neurostimulation therapy after her doctor recommended she look into Inspire. Ganey already had tried CPAP. “I wore that thing religiously every night. It didn’t work,” she says. CPAP only reduced her AHI from 44 to around 20.
She found two Inspire support groups on Facebook, one created by Inspire and one patient-led. She joined both. She wasn’t deciding if she was getting Inspire—she knew she wanted it—but she needed to know what to expect.
In the beginning, she specifically looked for negative posts. “I wanted to see if they sounded consistent between people or real,” she says. She subjected these posts to what she called “a reasonableness test” by searching the members’ names within the group to review their past posts and comments. This helped her determine if they were habitually negative or if their concerns were likely valid. “You have to sift the wheat from the chaff,” she says.
After receiving the implant in October 2019, she had her own questions—like if others still felt tired after three weeks. “I was wondering if I had surgery for nothing. All the bad scenarios were running through my head,” she says. She asked the group about their experience, and the responses varied, with some feeling better sooner and others taking longer. “Sure enough, after one more week, I woke up one morning and thought, ‘I don’t feel as tired as I usually do,’” she says.
Ganey also turned to the support group when she experienced an unexpected issue: Her device suddenly stopped beeping one night. “I thought it was broken. I was kind of freaking out,” she says. She asked if anyone else had this problem, and within minutes, a member responded, asking if she had checked the switch on the back. Surprised to learn there was a switch, Ganey quickly found and flipped it, resolving the issue. “It’s really helpful to be able to ask a silly question like that, get an answer, and you’re no longer worried. Crisis averted,” says Ganey, who since has become a patient ambassador for Inspire.
Harold Roettger: remedē and Inspire Patient
Roettger discovered he had central sleep apnea in 2008 and was prescribed BiPAP. Despite trying different masks, he struggled with the treatment and eventually gave up. He learned about remedē in 2019 and received the device in November 2020.
He joined the remedē support group “to find out what others are dealing with and find out that you’re not alone.” He says, “I hadn’t heard of very many people with central sleep apnea. I didn’t even know it existed until I found out I had it.”
Roettger had another sleep study about six months after getting remedē and discovered he also had obstructive sleep apnea. His neurologist recommended CPAP, but having had a bad experience with BiPAP, Roettger instead asked about Inspire. He received it in April 2022 and became the third person in the country to have both neurostimulators, according to him.
Being part of the remedē group, he’s been able to share his experience as one of a handful of people with both Inspire and remedē. Some people, he says, aren’t aware they could have complex apnea and that having both devices is possible.
The group has also been a valuable resource for him, providing answers to his questions about upgrading his device and managing post-implant soreness.
Experts Weigh In: The Value and Challenges of Online Support Groups
Christopher Pham, DO, FAAFP, a sleep medicine physician at Allegheny Health Network and prescriber of neurostimulators, sees online support groups as valuable tools for setting expectations and providing support.
Drawing from his background in leading behavioral intervention groups in the military, he emphasizes the importance of peer support in improving patient compliance and reducing feelings of isolation. “It’s difficult when not many people go through this and may not even talk about it. These forums provide an opportunity to hear what others are going through so that patients don’t feel so isolated,” he says.
A potential drawback to the groups, he says: Too much information. “But then again, I still don’t find that as a negative because I feel that if someone is investigating or researching their own treatment options, it just gives a better discussion with their doctor or the provider to help them with better insight,” Pham says.
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Heather Hermansen, senior marketing manager for Inspire, says the groups provide another source of “truth-building.” “We have a consumer-facing website that is helpful for patients, but we found that sometimes patient-to-patient is the best way for people, especially on the fence, to decide if this is something they want to move forward with,” Hermansen says.
As neurostimulators are far less common than other sleep apnea treatments, Hermansen says the support groups provide crucial insights into this lesser-known option. “There are millions of patients using CPAP and 65,000-plus using Inspire,” she says. “So a lot of this provides education about neurostimulation.”
The drawback, she says, is the risk of misinformation. Inspire serves mainly as a “silent observer” in the group it started, Inspire Sleep Apnea Community, but steps in to correct misinformation. Despite these efforts, Hermansen points out that it’s hard to know who saw an incorrect post and who may be impacted.
For this reason, Hermansen prefers patients and prospective patients refer to Inspire’s website for education. “In any social media group, whether it’s Inspire or your local coffee shop, people are always going to provide misinformation, whether they mean to or not,” she says.
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