Akathisia Stories MISSD + Studio C Chicago

On this episode we hear from two remarkable individuals who are at the forefront of a collaborative effort to raise awareness about the critical issues of mental health and polypharmacy challenges faced by our military personnel and veterans. Joining us are Wendy Dolin, the founder of MISSD, and Mike Tellerino, the director of K9s for Veterans. Together, they are working to combat the devastating effects of medication-induced harm, polypharmacy, and akathisia-induced suicidality within our military community.

On this episode, we hear from Denise Collins, whose husband, John, died in 2018, nine days after going on the antidepressant Citalopram, better known in the United States as Celexa. Earlier this year, her book, What Happened To John?: A memoir of enduring love, mental health, and suicide, was released and is available now in paperback and for Kindle. Denise spent three years researching, writing, and doing her best to recover following the tragic death of John and her experience of becoming a widow. The book opens on what Denise calls Day Zero, Monday, the 29th of October, 2018, a day that began "quite unremarkably," she says, but later that day, two uniformed police officers appeared at her front door. "In that moment," she writes, "I was blissfully unaware that life as I knew it had ended and that a living nightmare was about to begin."

Her website, denise-collins.com, is aimed at what she terms "corporate clients." She coaches female executives on developing their authentic leadership style and building a sustainable work/life balance. Her specialties are: Guiding People In Discovering and Celebrating Their Unique Personal Power (UPP©) Supporting Those Navigating Life After Loss and Teaching Resilience And How To Embrace Change.

On this episode, we hear from Geraldine and her daughter, Cindy. In 2015 Geraldine's ex-husband, Louis, Cindy's dad, ended his life at age 63, the victim of prescription drug-induced akathisia.

[Geraldine] The fact that the doctors kept him on the drugs and didn’t – you know, they don’t brush up and figure out there’s got to be a better way. We can’t just keep doubling up the medication because this man is frantic and calling them at different hours, you know, all hours.

[Cindy] He was never suicidal until the akathisia. You know, he did struggle obviously with the depression and anxiety but he never talked about not being able to go on or suicide or anything like that until it was ramped up with the akathisia.

Geraldine grew up in Brooklyn and, later, Queens, New York. Spending time in Manhattan, she developed an interest in the arts and attended the Fashion Institute of Technology. She got married and moved to Santa Fe, New Mexico, where her son, Ben, was born. When Ben was 2, Geraldine returned to New York and her second child, Cindy, was born in Westchester. It was there that she raised her children and worked in a family advertising business. After retiring and moving to Sarasota, Florida, Geraldine studied and developed a passion for drawing and painting. Other interests she has pursued are yoga, tai chi, dance, philanthropy, and volunteering with children and seniors. She now has two grandchildren, ages 7 and 10.

Cindy grew up in the suburbs of New York City, and now lives in Oakland, California, working as a functional/integrative dietitian. Having lost her dad, Louis, in 2015, she’s been involved in suicide and akathisia awareness, education, and support ever since. As a former journalist, she's an avid researcher, and after her father's death, she found Chicago-based MISSD and resonated with its mission. Living in Chicago at the time, she thought it was a perfect organization to get involved in as a way to honor her dad's memory and spread awareness about potential medication side effects. She did her own extensive grief work and joined the board soon after her dad's death. She believes talking about your experiences and listening to others going through something similar helps with the healing process and from feeling isolated or alone in your pain. She adopted a rescue dog, Finley, within a year of her own loss and loves spending time with the dog on the many Bay Area trails. Cindy dabbles in a variety of hobbies in her down time, including traveling, cooking, yoga, learning the ukulele, and fiber arts.

Read the episode transcript: https://www.studiocchicago.com/geraldine-and-cindy-transcript

Find the main podcast page at www.studiocchicago.com/akathisia-stories

On this episode, we hear from 24-year-old Marcello, who, prior to being severely injured by a prescribed antidepressant, was a healthy and happy college sophomore at The New School in New York City. Just days after starting the prescription, he suffered a catastrophic adverse reaction to the medication that led to akathisia, inappropriate polypharmacy, and years of suffering.

[Marcello] The experience for the sufferer during all of this is nightmarish. It’s unbelievable because you know what’s happening. You know that there’s incredible injury and you also know that there’s likely no help.

We also hear from Marcello's mother, Lisa, who has watched her son suffer the devastating effects of akathisia for more than two years.

[Lisa] What it looks like from the outside is like a horror show. It’s unfathomable. You know, he’s a very normal looking, functioning young man and suddenly he’s rocking, grimacing, in torturous pain as though someone were torturing him. I know that people with akathisia use the word torture a great deal, and it’s apt.

On this episode, we hear from Kerri Lynn. Kerri says that she was taught to trust doctors, taught to trust prescriptions, taught to trust the assessments she received from hospitals. And she did, but, she says, this trust nearly killed her.

[Kerri Lynn] It’s traumatizing what I went through.  I never, ever in my life thought a person could feel like that.  I never thought a person could think like that, especially against their will. I just knew inside of my soul, this is not me; this is not who I am.

Kerri Lynn was born in Long Beach, California, but was raised and currently resides in the upper Midwest. She grew up in what she calls a dysfunctional home and early on gravitated towards addictive tendencies. At 13 she discovered drinking. As she matured, Kerri chased other self-destructive behaviors and relationships, until her self-described out-of-control nature led to an ultimatum from loved ones: she had to find a solution how not to be self-destructive. Pain and circumstances, she writes, drove her to seek help from 12-step recovery, which, as we'll hear in our conversation, led to her 13-year nightmare with prescribed medications. During these nightmare days, she says, her medical vocabulary expanded as she learned words like suicidal ideation, disassociation, delusion, profuse night-sweats, rapid irregular heartbeat, and agoraphobia. Kerri is now 11 years medication-free and stable and says that today she has a strategy for living that works. We spoke in mid-December over Zoom.

On this episode, we hear from author, blogger, researcher, and self-described humanist and humorist Bob Fiddaman. His eponymously titled blog has focused on drug company and regulatory malfeasance since making its debut in 2006. At the time, Bob, an Englishman living in Birmingham, was taking himself off of Seroxat, a GlaxoSmithKline-produced antidepressant known here in America as Paxil. After making a protracted attempt at tapering off of the drug, he eventually decided to go cold turkey, a course of action he strongly advises against.

[Bob Fiddaman] "Within 24 hours, I was pretty much in a fetal position, you know, suffering stomach cramps, head zaps, intrusive thoughts. It was pretty bad. And it took about three months of absolute torture to get through to the other side, but I pretty much knew once I did reach the other side — because I was getting all my empathy, for one; that was coming back, so I’d be listening to music that I’d never really listened to before and really focus in on the lyrics. So, you know, my type of music is rock, AC/DC in particular. I started listening to the Dixie Chicks’ “Travelin’ Soldier,” and was listening to the lyrics and the story and I was crying, and then Martina McBride “Concrete Angel.” I was just crying my eyes out at these lyrics. So for the first time in a very long time I was able to sort of, like, feel things again, feel emotion again."

Bob Fiddaman was born in London in 1964, the youngest of three children. In 1967, his family moved to Birmingham where he has lived since, though he now splits his time between England and his adopted home in Panama. Bob married in 1987, divorced in 2006, and has three grown children. In 2006, he created the SEROXAT SUFFERERS STAND UP AND BE COUNTED blog, later changing the name to FIDDAMAN BLOG. Bob has met with the U.K.'s Medicines and Healthcare products Regulatory Agency on a number of occasions but has now ceased contact with them. He has also been a thorn in the side of drug manufacturer GlaxoSmithKline, reporting on numerous inquests and wrongful death lawsuits brought against the company by bereaved families. In our interview, you'll hear about some of these, including Dolin v. GSK, the 2017 trial that MISSD founder Wendy Dolin was the plaintiff in. Bob is the author of a 2011 memoir called The Evidence, However, Is Clear: The Seroxat Scandal, and has recently finished a science fiction novel called No Other Man. [Bob Fiddaman: “It's about angels, it’s about numerology, it’s about demons and it’s about love.] We spoke over Zoom.