EPISODE 17: WENDY DOLIN (MISSD) & MICHAEL TELLERINO (K9S FOR VETERANS)

[Andy Miles] Hello and welcome to “Akathisia Stories,” a podcast co-production of MISSD and Studio C Chicago.

MISSD, the Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin, is a unique nonprofit organization dedicated to honoring the memory of Stewart and other victims of akathisia by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia's symptoms are accurately diagnosed so that needless deaths are prevented. The foundation advocates truth in disclosure, honesty in reporting, and legitimate drug trials.

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.

Stay tuned for that interview.

November is a month traditionally dedicated to honoring veterans in the United States and many countries around the world through various holidays. We're reminded of the incredible sacrifices and contributions of our service members. Today we also turn our focus to the health care challenges that many of these brave individuals face upon returning home. Too many vets who seek therapeutic care to address normal yet difficult responses to trauma instead fall victim to akathisia and related polypharmacy harms.

We're pleased to announce that MISSD's latest public health video spotlights veterans and military personnel. Stay tuned until the end of this episode for an exclusive sneak peek clip from this impactful video, which will be released in December.

Wendy Dolin is a certified family therapist with a private practice in the Chicago area, and an internationally recognized health and safety advocate. She founded the Medication-Induced Suicide Prevention and Education Foundation (MISSD) following the 2010 death of her husband, Stewart, who died after suffering from an adverse drug effect called akathisia. MISSD educates the public about akathisia in a wide variety of ways and is proud to be involved with advocacy groups such as the Consumer's Union, the Safe Patient Project, and the National Center for Health Research. Dolin has been recognized by the International Society of Ethical Psychiatry and Psychology with its Humanitarian of the Year award. She holds a Bachelor's in Early Childhood Education from the University of Illinois and a Master's in Social Work from Loyola University Chicago.

Michael Tellerino is a United States Army veteran, honorably discharged in 1971. Born and raised in Illinois, he now resides in Plainfield, Illinois.  He is the CEO and founder of K9s For Veterans, a nonprofit organization headquartered in Plainfield. Their main objective is to provide service dogs to veterans in need. As part of that mission, they rescue dogs from high-risk kill shelters and provide them with extensive training. Additionally, they offer free food and medical care for the entire life of these service dogs, ensuring their well-being and the continued support they can provide to our deserving veterans. You can learn more about K9s For Veterans at K9sd.org.  Michael is also the CEO and founder of The Forgotten Warrior Memorial, located within Channahon State Park, in Channahon, Illinois. The memorial serves as a tribute to brave veterans and their families, specifically those who have lost a loved one to suicide due to PTSD, post-traumatic stress disorder. More information about The Forgotten Warrior Memorial can be found at TheForgottenwarriormemorial.org.

I began by asking Wendy and Michael to share the origins of their collaboration.

Wendy: Well, I’ll begin. What happened was, when MISSD was first formed in 2011, we did a suicide prevention walk and at that time we had MISSD t-shirts where we had the MISSD logo on the front and the definition of akathisia on the back. And as we’re doing this walk, inevitably people from the military were tapping me on my back or any of my board members who were participating in that walk and they said, oh, I think that happened to my loved one. And I went back to a board meeting and I said, you know, maybe we need to be exploring the military, and then Michael and I have a mutual friend, Andy, and he said, hey, you know, I know this great organization called K9s for Veterans; they do a lot of wonderful work in the military. And so I called Mike and we met and that was the beginning of what has been, I think, a 10-year-plus relationship and, you know, we’ve done so many projects together.

Andy: Michael?

Michael: Well, I started K9 for Veterans seven years ago. I was working with veterans before that, but I officially started K9 for Veterans to provide service dogs to veterans suffering from PTSD. That is a huge problem with our veterans. One of the biggest concerns that I have with that is with the VA and the medication that they dispense to our veterans. They take pills to get up in the morning, take pills to go to sleep, take pills to get through the day. It’s not really doing anything for them but just masking the symptoms. And I think with the combination of meds that they’re giving, like what Wendy said, it could have a profound effect on them. It really can. So one of the concerns that I have is that we start understanding what Wendy’s trying to accomplish and let people know what some of these drugs are capable of doing.

Would you agree, Wen?

Wendy: Yeah, I mean, I think — so after we met, I spoke at an event. You know, hundreds of people were there. And with these events that I’ve done — I think I’ve done several podcasts with you but several events.  Inevitably, if I’m sitting at the bar or in the hallway, all these vets come up to me and they say to me, I experienced that result; I experienced akathisia.  And they were happy – not happy but, you know, it was nice to know a name for it.  But I remember – I don’t know if it was John or one of those people I met, he was on 18 drugs.  

Michael:  John, yeah.  It was John. 

Wendy:  At one point he attacked his wife, which he was not a violent man, and, you know, they had to go on this whole journey of detoxing him.  But the problem with the polypharma that goes on, not just in the military but with other people, is you take a drug; it’s not working; it’s then pretty usual and customary to raise the dosage of the med.  That’s not enough.  Then they’re going to add, let’s say, a mood stabilizer.  Well, then you have, let’s say, Neurontin for pain.  All of these meds come with suicidal risk, and I think that we need to be – you know, the message of MISSD is simple:  You know, when you stop, start or change the dosage of any medication, if you develop new symptoms or you get worsening symptoms, it might not be you; it might be the drug.  But unfortunately, like Mike’s describing – and he can, you know, talk about the, you know, appointments with the vets.  Sometimes they’re given, what, a 90-day, you know, amount and they’re not getting monitored. 

I mean, Mike what do you hear about this – it’s polypharma.

Michael:  You know, I think they’re not prescribing the right meds, number one, for our veterans; they’re prescribing way too many for our veterans.  John Jans, who we had talked about earlier, he was definitely on 18 different meds.  He needed a caregiver just to help him with his medicines because he couldn’t keep track of what he was taking and when he was supposed to take them.  And John had attempted suicide several times and that just wasn’t part of John’s nature, you know.  But when they start doubling up – and then I think another problem is, too, once they’re getting these meds from the VA, they’re not enough or they’re not the right meds, so they start reaching out to the streets for meds.  So you’ve got that deadly combination between what they’re getting off the streets, what the VA is giving them, and I’ve known several veterans who had never thought they’d ever contemplate, you know, taking their own life, but yet, the meds that they were taking, they just couldn’t get through the day.  The only thought they had was ending their life to get away from the pain.  The pain was 24 and seven.  They couldn’t shed it.  So they would just take more meds.  

Wendy:  You bring up such an important point.  Like, this is what happened to my husband, Stewart:  He had some stress at work, no history of suicidal thoughts, and then he’s gone in six days.  And what I think is really something that’s so important to know – and Mike, you hit the nail on the head, and that is, it’s not that they want to end their life.

Michael:  No.

Wendy:  They want to end the reaction.  Like, we interviewed, when I was on your show, an Erin, who was a vet who really said – you know, she had akathisia I think from starting a smoking cessation drug, and she said, “I felt like my tongue was a battery on fire,” or people will talk about, you know, having this reaction of bugs crawling on them –

Michael:  Exactly.  Right.

Wendy:  And it’s not that they want to end their life.  They want to end the reaction.  And what I want to make clear to everyone on this podcast is, this is not just happening on these psychiatric meds.  One of the things that – malaria drugs can cause suicidal thoughts.  In fact, there’s a case in Canada – I’ll be honest, I haven’t followed it – where veterans were suing not the drug company but the country of Canada because they were forced to take these malaria drugs and there was this huge increase of suicides.  So it’s out there, and our goal is to just keep making everybody aware. 

Michael:  It’s a shame.  It really is.  These veterans are going through so much.  They really are.

Wendy:  And the thing that’s heartbreaking for me – and Mike and I talked about this for years – is Representative David Jolly, who’s no longer in Congress – I think he’s now a speaker on one of the news channels – he had introduced two bills, H.R. 100 and H.R. 4640.  One was, I think, 2016, one was 2019.  And I checked this morning:  They’ve been still introduced, and with the way things are going right now in Washington, I’m sure this is not a priority, but to say they actually – these bills were to acknowledge the fact that veterans were killing themselves because of meds, and in fact, the more recent bill, 4640, wanted to know which drugs they were on, you know, do autopsies.  So there is that understanding that these meds can cause suicide, but no one is changing their prescribing behavior, so I think it’s up to people like MISSD and K9s to be – we share our information, we share our stories to try to make people aware of that.  In fact, Mike taught me something which I tell people, and I even tell my clients now, that when you start a med, have a buddy system.  You make sure that you tell – and that’s completely from the military; I never heard that before – a buddy system that when you start drugs, a new drug or something, let someone know in your life.

Michael:  Right.  Exactly.  You know, and again, it’s the awareness, what you’re trying to do to raise the awareness so people understand the harmful effects that these meds have and what they’re doing to our veterans.  Like I said, John, he was on 18 meds a day.  When he detoxed off of those meds, he was a completely different person.  When he was on those meds, the 18 meds, he was a zombie; he really was.  He didn’t know where he was at, who he was talking to, what he was doing.  After going through the detox and coming off those meds, the majority of them, he transformed to the John that I knew before that.  So it plays an important role, it really does, being aware of what you’re taking.  And thanks to what you’re doing, you know, we are raising awareness of that.  Otherwise, it would just be the unseen.  

Wendy:  I mean, there’s been a lot of discussion about PTSD.  You know, and obviously it’s of course very, very real.  But there’s other ways to deal with it besides just with medication.  There’s a wonderful vet.  Her name is Mary Vieten; I don’t know if I’m pronouncing it right.  She has basically like a boot camp for people with PTSD, and she’s had remarkable results. 

Having service dogs – Mike, I mean – 

Michael:  Oh, yes.

Wendy:  You can tell me – you know, can you please share about the beauty of service dogs?

Micheal:  They are an amazing asset to our veterans.  One of the reasons John was able to get off those meds is because of the service dog.  It really was.  The service dogs – when we’re in the military, we have what we call a battle buddy.  Someone has always got our back.  Someone was always there to watch out for us.  When our veterans come home, they don’t have that buddy system anymore.  They don’t have – they really don’t even have – they’re so used to being told what to do and when to do it, when they come home and they’re suffering from PTSD – I give an example.  I got a call from one of our mothers, wives of our veterans, and she said, I just want to thank K9; I got my husband back.  I says, well, explain.  She says, well, my husband would get up in the morning and have a cup of coffee.  He would sit in front of that TV six, 12, 18 hours a day, was a shell of a person, didn’t talk to me, didn’t talk to our kids, wouldn’t talk to our neighbors – nothing.  Didn’t leave the – wouldn’t even go to the mailbox.  Three months after having the service dog, he now gets up in the morning, grabs that dog, takes it for a two-mile walk, he’s lost 10 pounds, he comes in the house now and doesn’t shut up.  You know, now he’s asking her, could we go to Walmart?  You know, that’s the kind of difference, with the proper treatment or assistance, you could overcome this.  You really can.  It’s not an easy journey by any stretch, but it just could be done.

Wendy:  I mean, as a therapist and as the founder of MISSD, I say all the time that I’m not antidrug, and I’m sure there is a place, of course, for medications with PTSD.  And Mike speaks more to this than I do – is that – but there’s other choices.  There’s exercise.  There’s dogs.  There’s meditation.  There’s other things that can be holistic things that can be done, and unfortunately, you know, the VA doesn’t have the – I don’t know if it’s the money, the interest.  I don’t know the VA; I can’t speak for them.  But whatever it is, it seems like their first line of help is drugs.  Is that correct, Mike?  

Michael: Right.

Wendy: I’m not as familiar as you are.

Michael:  That’s their answer to everything, in my opinion, you know?  I mean, the VA, they do what they can do with what they have to work with, but I don’t think – and I know for a fact that our veterans are not getting the right help that they need to help them through their PTSD or keep it under control.  They’re just not. 

Medication is not the answer.  That’s just masking the problem, and most of the time it’s compounding the problem that they’re dealing with.  So, you know, you need different type of help.  It’s not a one pill, take this and you’re going to be fine.  It doesn’t work that way.  They’re giving them – like you said, again, John Jans – 18 pills.  I mean, he needed a schedule just to remind – you know, a caretaker to give them to him.  

Wendy:  When he told me that, at that event I was at, I had never heard of that many – I mean, not that I’m a doctor, but I had never heard of any human being taking that much medication. 

Have you heard other stories of this level, Mike?

Michael:  Yes, I have.  You know, and most of it is because they’re not getting the psychological help that they need, the clinical help, a psychiatrist to help them work through this.  Again, their answer is take this pill, you’re going to be fine.  Take this pill to wake up, take this pill to get through the day, take this pill to go to – you know, to go to sleep at night, you know, and if things get really bad, take this pill.  What kind of answer is that for our veterans?  And again, they’re just masking the problems.

It’s a shame that that’s the way they’re treating our veterans.  And fortunately, because of MISSD, you know, we’re raising awareness to our veterans that, hey, maybe you need to be your own caregiver or in charge of your own health.  Take control of your health.  You know, if you find yourself going off the rail, you know – but for a veteran it’s hard to reach out for help.  They’re not taught that they need that; they can do it all on their own.  So the first step in getting better, I always tell them, is asking for help, or things will never get better. 

I mean, I’ve seen veterans lose everything because of the meds that they were on.  They couldn’t work, they couldn’t function, they couldn’t get along with their wives, their kids, and it just changed their entire personality.

Wendy:  Well, Michael, can you address something that I found shocking?  I wasn’t able to go to your event for warriors, soldiers that – can you articulate for me that if you end your life by suicide you can’t be honored by the military?  

Michael:  They will not put your name on any wall, no.  That’s my understanding and I’ve researched that till I’m blue in the face.  That’s why we created the memorial in Channahon.  We have veterans that commit suicide and the VA doesn’t even want to acknowledge that.  There’s 22-plus veterans – and I say “plus” – veterans a day committing suicide.  We decided we had to do something, and I talked to you about it as well, that we needed to build something to honor these families, so we built a beautiful memorial in Channahon State Park honoring our veterans who committed suicide because of their PTSD, because there’s nothing for them.  Nothing at all.  So we have a full-blown ceremony, bagpipe player, “Taps.”  We present the family with the flag.  We do a blessing for the veterans and stuff like that.  And I tell them, the one takeaway message is that if anybody leaves here, the one thing you need to leave with is knowing that your son or these veterans that we’re honoring are true American heroes and died in service to our country.  They just didn’t wake up one day and say, you know what, I’m just going to take my life.  That’s not the way it works, you know.  It’s a shame.

Wendy:  And one thing too, Mike, is that, you know, most people say “committed suicide.”  The new language is “died by suicide” because we’re trying – you know, if you say you committed suicide – and I slip myself sometimes and say it.  “Committing suicide” sounds like you committed a crime.  So the new way of speaking is “died by suicide” because it wasn’t a crime, but that’s just some new –

Michael:  The terminology.

Wendy:  Yeah, but the thing that I found fascinating – and this is – we’ll get to the video later – is that they have tried, in my opinion, all this suicide prevention bills and all these bills to try to end, you know, reduce the number of veteran suicide, and it hasn’t changed.  So this almost feels like the definition of insanity.  You’re doing the same thing over and over again and being surprised that the numbers haven’t changed.  And so in my mind is that is why maybe Representative David Jolly, ex-Representative David Jolly, I think came to some conclusion that we’re missing the boat here.  Whatever you’re doing, whatever resources we’re doing – I’m not saying it doesn’t help everybody.  Don’t get me wrong.  Maybe the number of suicides per day would have been 40.  I don’t know.  But all I’m saying is it doesn’t seem to change statistically when we talk about 18 to 22 – and I agree with you, Michael.  I believe there’s probably way more but they just don’t report it.  

Michael:  They don’t.  A lot of states don’t report it.  You know, how do we allow 22 veterans a day to commit suicide?  How are they not getting every bit of help that they need to get through this?  You know, it seems to be an accepted fact that, yeah, we’re losing 22 veterans a day, and it’s such a bad reaction to 22 a day.  It’s terrible. 

Wendy:  Yes.  And what is interesting is I – I don’t have the statistics in front of me.  Some of the vets who weren’t even working necessarily, you know, hadn’t been in combat were also dying, because they were given so many med combinations.  I mean, I don’t have official data on that.  That was just something that I had heard.  But either way, regardless, it’s a terrible situation and, you know, they’re not getting help.  I mean, as a therapist there’s a lot of people that need help, don’t want to reach out; they think there’s a stigma.  I mean, I have clients that have insurance; they don’t even want to put their mental health bills through their insurance company because they don’t want to leave a paper trail that they got mental health [assistance].  So now, you know, we’re in a really bad situation. 

Michael:  I get it.  I totally get it.  It’s a shame what our veterans are going through.  They’re not getting the proper help that they need.  They’re really not.

Andy:  Michael, I wanted to ask, when and how did you come to see that K9s were a key component?

Michael:  You know, a long story short, I started out at Paws Illinois.  We were doing rescues and fostering and stuff from shelters and stuff and placing them with families.  I got a call from Natural Balance pet food.  They wanted me, or Paws Illinois, to be the distributor of all their pet food, rather than dealing with all these different rescues and stuff.  So I did.  Well, I ran into John Jans, who was my first veteran, and John was just totally – the way he reacted to his PTSD was by being funny.  It was always in a joking way.  John was never serious about anything.  You know, and we got John a dog and, you know, I said, John, this may help you, you know, to have some kind of companion to help you through the day.  And after he had this dog, he’d come up to me and he say:  “Mike,” he says, “I’ve come to depend on this dog.  It’s my best friend.  I have someone to talk to, someone who’s always there for me, somebody who I know has always got my back.”  And I said, “Well, John, why can’t we give everybody a dog, a service dog?”  And he said there’s just not enough to go around; nobody’s really training them.  People don’t understand the difference that these dogs can make in a veteran’s life.  They really don’t. 

It’s never going to cure PTSD.  That’s a guarantee, you know.  But I’m going to tell you, they could turn on a light.  My girl Samantha, she can turn out a light for me, she can get my keys for me.  I have a real issue with people getting too close into my space, and if I have Sam sitting at my side and you come up to me and you’re just a little too close for my liking, Sam will see me getting a little agitated and she’ll come from my side, walk between us, and gently nudge that person away to open that space.  If I have my back towards the room, Sam will face out so no one will come up and startle me.  And, you know, and those are all great things to help you get through the day, but the most important thing Sam does for me:  When I’m having a PTSD episode, I have a tendency of doing “this” with my hands [rubs hands together], and I’m not even aware I’m doing it.  Soon as Samantha sees me doing that, oh, my god, she’ll come up, she’ll start barking at me, she’ll start pawing me, she’ll start licking my face, and what Sam is doing is telling me, you don’t need to be what I commonly call the bad place.  Come back to me; everything is fine; you’re safe; you’ve got nothing to worry about here.  And it works.  I mean, it really works.  These dogs are a true gift to our veterans.  They really are.  And the training that we’ve put into them, I mean, it’s worth every hour that we put into these dogs because they are true heroes to our veterans.

And our veterans believe in what MISSD is all about.  They understand coming off of 18 drugs how that’s going to benefit them way more than taking 18 drugs is doing, or the combination of drugs that they’re taking.  

Wendy:  But one of the things that you’re describing, Michael, is this, is that there’s different types of akathisia but one is withdrawal akathisia.  You know, it’s getting – I mean, there’s four types of akathisia:  chronic, tardive; there’s, you know, acute, and then there’s withdrawal akathisia, which can happen a lot, like, even if you’re just on one drug.  But the point is is that people think, “I’m going to go cold turkey,” you know, and you can’t because people develop suicidal thoughts withdrawing from these drugs.  So I feel for John.  I don’t know what his withdrawal had to be like but oh, my goodness.

Michael:  Oh, it was terrible.  I was with him a few times and went to his house when his wife called me and said, you know, “Can you come over?  John is totally irrational.  Right now he’s talking crazy.  He’s being abusive,” you know.  So, like you said, so many different side effects that the withdrawals have coming off these drugs.  That’s why you need a buddy system.  

Wendy:  Well, that’s what I got from you.  That’s what I talk about.

The one thing I want to make clear to everybody here and the viewers is this is not just psychiatric meds.  When I was in Washington, D.C., in March, presenting at a conference, shortly before I got there, Propecia, the hair loss, you know, the hair-growth drug, now has a suicidal warning on it.  So, you know, you want hair; you don’t want to die.  I mean, it’s just a question that we need to – I want this to also be the broad conversation is just be careful.  Have a buddy system.  Be in touch with yourself.  Because a lot of classes of drugs – if I’m not mistaken – did Erin try Chantix?  Was that her – the smoking drug, I think.  And now there is a suicidal warning on that.  

Michael:  That’s what I was on, and I was on my motorcycle and I was thinking about running into the other lane, and I thought, what am I, insane?  You know, I mean, really, I actually had the thought, well, I’m just going to take my bike and just veer it to the other oncoming traffic.  And that scared the hell out of me.  Why would I have these – but I was on Chantix.  

Wendy:  Well, there’s a warning on it and then I think they took the warning off.  I haven’t checked recently.  But look at what happened to you.  Someone would say, oh, he killed himself because he has PTSD.  No, he killed himself because he’s having a reaction. 

Michael:  Totally.  I mean, it was bad; it was terrible.  Scared the hell out of me, I’ve got to tell you.  It did. 

Andy:  You’ve touched on some of the projects and collaborations that you’ve worked on, but could you tell us about any recent projects or campaigns?

Wendy:  Well, what we just are in the process, we’re in production:  We have done four other videos that have over a million views, all four of them, so we’re really proud of that work, and we just decided to do a project with K9s and what it is is we interviewed vets to their stories regarding akathisia, and our team that puts together our normal videos is going to be doing one, which is going to be akathisia in the military and just really talk about the statistic of suicide, talk about people’s reactions and what they experienced.  So we’re hoping – November is Veterans Awareness Month, you know, Veterans Day.  We’re hoping to get that out in November.  But what we also do is, thanks to our many, many, many donators, we try to do projects actually all over the world.  Our most recent project was in Ireland.  We put posters all over, you know, Ireland and Belfast, and then we did wraparound buses in Salt Lake City, Utah, because there’s a high degree of fentanyl use there.  We’re now doing – we have a course online for social workers who need credits.  We’re now doing a course for doctors.  And we’re now looking into another project, which you just recently talked about, is possibly putting up some of our billboards near bases in either North Carolina or, you know, that area, and Maryland, to just kind of raise awareness of akathisia.  And literally it’s a movement.  I mean, you know, we can tell how many people view our, you know, views online of our videos, but you pull up – I mean, we had signs on train stations in New York and we put them on during the holidays, and according to the company that we use, 6 million people ride those trains during the holidays.  So it is a movement of awareness. 

And I don’t know about you, Michael, but it’s almost gotten to the point, like, any time I hear someone took their life by suicide, I’m like, what drugs were they on? It’s like I almost get too biased the other way.  Don’t get me wrong.  I know that there’s other reasons people end their lives, but we’re just trying to expand that view.

Michael:  I think it only compounds their PTSD by doing that many drugs.  It’s not going to the source of your problem; it’s just – and that’s just my opinion – but it’s just masking, you know, your issue that you’re having.  It’s not doing anything – Wendy, all I can say is working with you has been a blessing.  Your organization, bar none, hands down, is doing so much to bring awareness to not only our veterans that are suffering from this but general public as well.  If it wasn’t for your message – you know, if you could save one life by your message, helping people understand the dangers of medications, you’ve done your job.

[Andy Miles] You've been listening to the “Akathisia Stories” podcast.  We'll have another episode soon.  If you'd like to share your own story for this podcast, please email studio.c.chicago@gmail.com, and please share this podcast, rate it, and subscribe.

I'm Andy Miles, and I'd like to thank Wendy Dolin and Mike Tellerino for their time, candor and dedication, and I'd like to thank you for listening.

Before we go, and as promised earlier, here is an exclusive sneak peak of MISSD's latest public health video.  It will be released in full in December and available from the MISSD Foundation's YouTube page