Recurrent Stroke Survival: Maria Sclafani

Understanding Recurrent Strokes: Causes, Prevention, and Management

Introduction

Every year, thousands of people experience recurrent strokes, significantly impacting their health and quality of life. If you or a loved one have suffered from a stroke, understanding the risks and preventive measures for recurrent strokes is crucial. In this comprehensive guide, we’ll explore the causes, symptoms, prevention strategies, and treatments for recurrent strokes.

What is a Recurrent Stroke?

A recurrent stroke occurs when a person who has previously experienced a stroke suffers another one. Recurrent strokes are more common than many realize, accounting for about 25% of all stroke cases. Understanding the underlying causes and implementing preventive measures can significantly reduce the risk of recurrence.

Causes and Risk Factors

Causes

• Previous Stroke or TIA: Individuals who have had a previous stroke or a transient ischemic attack (TIA) are at a higher risk.

• Atherosclerosis: The buildup of plaques in the arteries can lead to blockages, increasing the risk of stroke.

• Cardiac Conditions: Atrial fibrillation and other heart conditions can lead to blood clots that travel to the brain.

Risk Factors

• High Blood Pressure: The leading risk factor for stroke, poorly managed hypertension can double or even quadruple the risk.

• Diabetes: Diabetes increases the risk of stroke by accelerating the process of atherosclerosis.

• Smoking: Nicotine and carbon monoxide in cigarettes damage the cardiovascular system.

• Physical Inactivity and Obesity: Both are significant risk factors for stroke.

Symptoms of Recurrent Stroke

The symptoms of a recurrent stroke are similar to those of an initial stroke and may include:

• Sudden numbness or weakness, particularly on one side of the body
• Confusion, trouble speaking, or understanding speech
• Difficulty seeing in one or both eyes
• Trouble walking, dizziness, or loss of balance and coordination
• Severe headache with no known cause

Prevention Strategies

Preventing a recurrent stroke involves a combination of medical treatment, lifestyle changes, and ongoing monitoring.

1. Medications: Antiplatelet drugs like aspirin, anticoagulants, blood pressure medications, and statins are commonly prescribed to reduce the risk of a second stroke.
2. Lifestyle Changes: Adopting a heart-healthy diet, engaging in regular physical activity, quitting smoking, and limiting alcohol intake are essential.
3. Regular Monitoring: Regular check-ups with your healthcare provider to monitor blood pressure, and manage diabetes are crucial.
4. Medical Procedures: In some cases, surgical procedures like carotid endarterectomy or stenting may be recommended to remove blockages in the arteries.

Treatment and Rehabilitation

After a recurrent stroke, timely and appropriate treatment is vital. Treatment options include:

1. Acute Treatment: Immediate treatments to restore blood flow to the brain, such as clot-dissolving medications or mechanical thrombectomy.
2. Rehabilitation: Physical therapy, occupational therapy, and speech therapy are often required to regain lost functions and improve quality of life.
3. Psychological Support: Stroke recovery can be mentally and emotionally challenging. Support from psychologists and support groups can be beneficial.

Conclusion

Recurrent strokes pose a significant health risk, but with the right knowledge and preventive measures, the likelihood of a second stroke can be greatly reduced. Understanding the causes, recognizing the symptoms, and adhering to preventive strategies and treatments are key to managing stroke risk. Stay proactive about your health, and consult with healthcare professionals regularly to ensure you’re taking all the necessary steps to protect yourself.

FAQs

1. What increases the risk of a recurrent stroke? High blood pressure, previous stroke or TIA, diabetes, smoking, and heart conditions like atrial fibrillation.
2. How can I prevent a recurrent stroke? Taking prescribed medications, making lifestyle changes (healthy diet, exercise, quitting smoking), and regular medical check-ups.
3. What are the symptoms of a recurrent stroke? Symptoms include sudden numbness or weakness, confusion, trouble speaking, vision problems, dizziness, and severe headache.
4. Can lifestyle changes reduce the risk of recurrent strokes? Yes, adopting a healthy lifestyle can significantly reduce the risk. This includes a balanced diet, regular exercise, quitting smoking, and managing stress.
5. What treatments are available for recurrent strokes? Acute treatments like clot-dissolving medications, mechanical thrombectomy, and long-term rehabilitation through physical, occupational, and speech therapy.

By understanding and addressing the risk factors and symptoms of recurrent strokes, you can take proactive steps to safeguard your health and well-being.

Recovery After Stroke Podcast Interview With Maria Sclafani

Misdiagnosed at first, Maria Sclafani shares her stroke recovery journey, emphasizing self-advocacy, rehabilitation challenges, and mental resilience.

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Highlights:

01:59 Introduction
03:35 Possible stroke symptoms and diagnosis
13:02 Stroke history and symptoms
17:03 Recovering from stroke and managing fatigue
25:22 Stroke recovery and job security
32:10 Dealing with stroke long-term deficits
38:28 Executive function challenges after stroke
43:22 Work performance after stroke, and eventual resignation
49:37 Experiences with fatigue and its impact on daily life
59:15 Stroke recovery and medical care
1:03:12 Challenges in accessing neuropsychological evaluations
1:15:04 Learning patience and adapting after a stroke

Bill Gasiamis 0:00
This episode of the podcast is brought to you by headbed.com.au Hello everyone. Before we dive into today’s episode, I wanted to share something special. In episode 305 I interviewed Catherine Randabel, the inventor of HeadBed, a product revolutionizing hair salons, especially for stroke survivors. HeadBed provides excellent neck and head support during hair washes in hairdressing salons, reducing strain and promoting better blood flow.

Bill Gasiamis 0:33
For stroke survivors. This means lowering the risk of arterial damage and raising concerns about another stroke. It ensures a safe and enjoyable salon experience. Now I’m thrilled to support a product that aligns with my mission of stroke prevention and safety. In our interview, Catherine explained how HeadBed’s ergonomic design prevents neck hyperextension a common issue increasing the risk of stroke.

Bill Gasiamis 1:02
With HeadBed you can feel confident and comfortable at the salon knowing your health is prioritized. If you’re a stroke survivor, or you know someone who is the HeadBed is a must-have for your next salon visit, check out episode 305 For my full interview with Catherine and learn about how this product can make a difference. Now for those in the United States, visit headbedusa.com to get yours today and enjoy peace of mind at the salon.

Bill Gasiamis 1:34
Now I’d also like to mention my book The Unexpected Way That a Stroke Became the Best Thing that Happened. 10 tools for recovery and personal transformation. It features inspiring stories from 10 stroke survivors and offers hope for those on the road to recovery. For more information, visit recoveryafterstroke.com/book or search for my name Bill Gasiamis on Amazon.

Introduction – Maria Sclafani

Bill Gasiamis 1:59
This is episode 312. And my guest today is Maria Sclafani, who experienced a stroke that was initially misdiagnosed as carpal tunnel syndrome. This insightful episode Maria shares her remarkable journey of advocating for problem medical attention, the challenges she faced during her rehabilitation, the impact on her work performance and mental health and how she managed fatigue while returning to work part time.

Bill Gasiamis 2:29
We also discussed the unexpected support she found in her community and the importance of empathy and understanding towards stroke survivors. Maria’s story is a powerful reminder of resilience and determination needed to navigate life after a stroke. Maria Sclafani, welcome to the podcast.

Maria Sclafani 2:50
Thank you.

Bill Gasiamis 2:52
Thank you so much for being here. Tell me a little bit about what happened to you.

Maria Sclafani 2:56
Yeah, so I worked as a faculty librarian. We call them liaison or subject librarians here. So I was working in Kansas at Wichita State University. And it was in September 2022.  and it was kind of the end of September, I think it was actually September 22 because I started September 14, the week before, so I was in my office.

Possible Recurrent stroke symptoms and diagnosis

Maria Sclafani 3:35
So I was by myself and I just had numbness in my right my left arm. And it would like, happen for a few seconds, and then go away, and then it would happen again. Go away, I would have been like quite a few times. And I was kind of like, trying to figure out what it was because it was strange, and it never happened to me before.

Maria Sclafani 3:57
Um, so I kind of like I think logically, I couldn’t really accept that it was a stroke because I was at the time 36 And I was in pretty good health and I didn’t have any, like factors or conditions or anything that would lead to the type of strokes that I had. Um, so I decided maybe it was carpal tunnel, because that can cause numbness in the in the arm. Um, so I called my doctor’s office. And they couldn’t get me until the following Monday.

Maria Sclafani 4:36
And I described the symptoms, but I said, you know, I think it’s carpal tunnel. So, I like when about the rest of my day. Like I went and had coffee with my friends. I drove home like I made myself dinner, you know, like, did whatever I normally do. And then I’m that week on Friday. Friday, I had tears a terrible headache. And I actually left work early to go home, because the headache was so bad.

Maria Sclafani 5:08
And I was kind of like, you know, my job entailed teaching and working at the reference desk and helping people. So it was very, like, I guess I would say like, very much, you had to physically be there and be able to function and I was struggling with that a little bit.

Maria Sclafani 5:27
So I was like, kind of scrambling to get my colleagues to cover my shifts at the reference desk, and to like, cover my classes for me, because I didn’t really know what was going on. And so Friday, I went home early, with this terrible headache. And I went to bed probably like 4pm or something.

Maria Sclafani 5:49
And I slept for like 14 hours. And I did call my doctor’s office on Friday, and I think they prescribed me over the phone. A like a steroid. So, you know, I eventually got the steroid and took it the next day or whatever. And then the weekend was kind of strange. Um, even now, it’s sort of like it looking back, like, it doesn’t really make sense.

Maria Sclafani 6:20
But it’s understandable for someone who had like trauma to the brain and was, you know, trying to function I was just trying to do stuff like I normally do. So I was trying to do my laundry and cook and like, I do meal prepping on Sundays. And I couldn’t, like I messed up the recipe, and I couldn’t figure out what I did wrong. And I was really confused about it and kind of like, frustrated and, like irritable.

Maria Sclafani 6:49
And so then, um, went to a doctor on Monday, she examined me, and she diagnosed me as having a pinched nerve in my neck. Yeah, and she did the stroke protocol. So she like felt my arms and legs. But I wasn’t like having a stroke at that moment. You know what I mean? So I don’t know how helpful that was. But, so she referred me to get an MRI of my neck. But I couldn’t get in to get the MRI until Sunday.

Maria Sclafani 7:27
And this was Monday. So I was like, Okay, I’m really struggling to do my job, though. Like, you know, what, can you do anything for me in the meantime, like, I don’t really understand what’s going on here. Um, and she kind of said, if you want some family medical leave paperwork to be filled out, we can do that for you. But like I and I laughed, I was driving around, like, I drove to work, worked a full day, like drove home, like, whatever.

Maria Sclafani 7:57
And I don’t think it was until Thursday that week, that, um, I went home early, like at lunchtime, I got a ride into work with my co-worker, because he lived in my building. And I normally drive like a stick-shift car. And I was kind of like, I don’t, I don’t feel like I can figure that out. So I’ll just get a ride with my coworker.

Maria Sclafani 8:21
So he gave me a ride into work. And then I felt sick, and had this terrible headache again, and asked my another co worker to give me a ride home during lunch. And so then I was in my apartment, and I had a neighbor that I was very good friends with and she kind of came down. She’s in her 60s. And we were just chatting. Um, she was kind of keeping me company because my coworker that drove me home couldn’t stay because it was her lunch break.

Maria Sclafani 8:48
So she had to go back to work. Um, so my neighbor Jesse said, you know, Maria, is it possible you had a stroke? It like, it sounds like a stroke, you know, like, Yeah, have you thought about that? And I was like, I don’t know. And so we kind of had this back and forth where she was like, Well, I think you should go to the hospital. And I was like, I don’t think I need to do that. It’s just a pinched nerve.

Maria Sclafani 9:13
And so then she finally got my, she called my doctor’s office and talk to my doctor, like through the emergency line. Um, and like, actually was able to speak to my doctor and was like, you know, I’m looking at Maria, she’s got drooping on the left side of her face. She’s, and I was having aphasia at that point. Um, so I was mixing up my words.

Maria Sclafani 9:38
And I was slurring my words, also, because I had the droop on the left side of my face. And so the doctor just said, you know, take her to the emergency room. Um, so, I call my parents and I was like, very upset. I was also crying a lot during this period, because this was like, basically it lasted eight days from like, A Wednesday to a Thursday, if

Intro 10:02
you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, and doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.

Intro 10:26
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recovery after stroke.com where you can download a guide that will help you it’s called seven questions to ask your doctor about your stroke.

Intro 10:45
These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website. Now, recovery after stroke.com and download the guide. It’s free.

Maria Sclafani 11:04
So I was like very, like emotional. So I call my parents. And they were at the airport. And they were gonna get on a plane to go to upstate New York for a wedding. So I said, I don’t know what’s wrong with me. I can’t do anything. So my dad said, If you can’t do anything, go to the emergency room.

Maria Sclafani 11:25
And they had to then like get their bags, they just check their bags, and they had to get them back and then get waitlisted for flights to Wichita to come out and see me because they live in Colorado. So I finally made it to the emergency room. My neighbor Jesse drove me. And when I moved to the emergency room, you know, waited around for a bit and then they did when they did the MRI.

Maria Sclafani 11:52
They were like, yeah, so you’ve had multiple strokes. Um, there’s multiple, I think they call them infarct like, like little, you know, spots on your brain. And there’s one that seems a lot older than the rest. But it looks like you’ve been having them for about eight days, if you’re saying that the symptoms started on Wednesday.

Maria Sclafani 12:14
So they determined that they were ischemic strokes. And then when my parents came, my mom told them that her family has a history of Leiden factor five, which is a blood clotting disorder. So I mean, I think that they were like, oh, like we figured it out. So they tested me for it, but I don’t have it. And my mom doesn’t have it, just her two brothers have it. So they rolled that out. And then I ended up because I was at one hospital.

Recurrent stroke history and symptoms

Maria Sclafani 12:47
But they actually transferred me like from the emergency room to another hospital that had a stroke center. And so I think I got better care there than I did you know, in the emergency room. So yeah, it was it was better. So I was there for three more days. Um, they did a lot more scans and tests, they test my like, they scan my legs to see if I had any blood clots in my legs.

Maria Sclafani 13:14
They did something called the T E, where they went, they stuck something down my throat a camera, and then they looked at the top of my heart to see if there were any holes, which there were not. So they ruled out like they could rule out that but then they also gave me an implant, a heart loop monitor that’s just in my chest kind of under the skin.

Maria Sclafani 13:40
And it’s like about this big maybe it’s a piece of metal and it just tracks my heart rhythm to check for atrial fibrillation. So it syncs to like a cell phone, and it alerts the clinic if I have any atrial fibrillation, but I’ve had enough for two years, and I haven’t had any. So that doesn’t seem like a factor. Um, so yeah, then I I just had to, like recover. You know,

Bill Gasiamis 14:12
tell me about let’s go back to the very beginning, the first self diagnosis that you made. Did you have any understanding of what stroke was experience of anyone having had a stroke beforehand? Where that kind of made you rule it out? Or do we just guessing and thought that it was baby carpal tunnel, and did you know anyone with carpal tunnel?

Maria Sclafani 14:41
Well, so the interesting thing about the stroke history is that when I was in college, my it was my sophomore year of college. I lived in a dormitory that was like a house. It was like a very large house. It had been like a school for girls or whatever. So, um, there was a girl, there was a woman in my dorm who was about to graduate, she was a senior. And she lived on my floor. And she actually had a stroke, the week of graduation.

Maria Sclafani 15:16
So, um, it was a brainstem stroke, caused by a blood clot. And she actually was on the floor of her room. She collapsed. And she was making automated, like, sort of strange sounds like I think sounds that the body was admitting that I think when she wasn’t actively speaking, it was just something that was happening biologically. So we, we were all we all spent like a few hours trying to figure out what’s going on.

Maria Sclafani 15:48
We tried to get into her room, we couldn’t get into a room. And later, we found out that that was because she was in front of the door. But we didn’t know that. And then we like, called her room and she didn’t pick up and then there was a balcony on the roof that we were not supposed to, to. But we did, of course. So we went out on the balcony, walked across the balcony and looked in her windows, but her curtains were pulled down.

Maria Sclafani 16:15
So we ended up calling campus, I think they were called campus safety, but like whatever campus police, and she had to break into the room through the balcony through the window, she had to use like a knife to cut through the screen and climb in through the window. And that’s when she found Maggie. And then like the ambulance showed up. And it was like a whole mess because I guess the ambulance people locked their keys in the ambulance.

Recovering from stroke and managing fatigue

Maria Sclafani 16:43
So it was a long time. Before they were able to actually get her in the ambulance. This was in Massachusetts, it was in Western Massachusetts. It was a long time before they could get her like to the actual like emergency like the hospital. So then they also didn’t know what’s going on because she was young. She was you know, 2122. And she was also they kept asking us like after she was found there were for like four of us maybe.

Maria Sclafani 17:14
And they so they were interviewing all of us and asking like does she do does she drink? Does she use drugs, you know, illegal substances, any of that. And we were like, No, she doesn’t even drink. She’s sober. And she’s really healthy. She used to be on the crew team. And like, she wants to be a vet.

Maria Sclafani 17:33
And like she’s planning on going to that school after this. So like, she’s not like, you know, experimenting with like drugs or anything like that, you know, we’re pretty sure that that’s not the case. And I you know, I only knew her for one or two years. No, one year, I only knew her for one year, my sophomore year

Bill Gasiamis 17:54
that she had a stroke. And that was your first understanding what stroke looked like you compared yourself to that situation. And you thought that you don’t fit that situation? Yeah, because

Maria Sclafani 18:07
it was sort of it was very scary for all of us at the time, because we like couldn’t comprehend like that these things just happen to people like regardless of whether they’re good or bad, or they do good things or they do bad things like or they do drugs, or they don’t do drugs, like medical things just happen to people.

Maria Sclafani 18:27
And so I feel like we were all like, but she doesn’t drink or she doesn’t even drink and she doesn’t do drugs. And you know, she’s so healthy. And she’s got a whole plan for her life like after this. You know, this is not good. It’s not good timing. She’s about to graduate from college.

Maria Sclafani 18:43
And so what they additionally eventually figure out that it was, you know, a brainstem stroke. They were trying to figure out if there had been any indicators beforehand. And the only one was that she had had soreness in her jaw. She’d been complaining about that. And that was it. I mean, she then she collapsed on the floor of her dorm room.

Bill Gasiamis 19:05
Yeah. So your, your stroke your whole situation. After eight days of trying to work it out, you end up in hospital, how do they treat it? What’s the path forward after those first eight days.

Maria Sclafani 19:21
So I was referred to a neurologist. And I was referred for physical therapy, occupational therapy and speech therapy. And I actually was able to go to a rehab clinic in Wichita, where all of the physical therapy all of the therapies were together in one place. So it was residential, like partially residential.

Maria Sclafani 19:45
So some people lived there, but like I was able to go to one place and then my speech therapist, my physical therapist, and my occupational therapist could all like, communicate with each other and they all like shared information about me and like could come up with A game plan.

Maria Sclafani 20:01
So I did, I did that after, unfortunately, my mom chose to stay with me in my apartment in Wichita to help me, um, because we weren’t really sure if I could legally drive. And we didn’t really get clear answers from anyone. They told us to ask the occupational therapist, an occupational therapist said, I don’t know, you have a driver’s license.

Maria Sclafani 20:27
So I don’t know, like, so I had those therapies. For a few months, I had to go on family medical leave from the university, um, for like, a life threatening, you know, thing. And so I went down to working part time. Um, so four hours a day.

Bill Gasiamis 20:58
What was that, like, going and working part time? And how did you get through it? Um,

Maria Sclafani 21:04
well, it was. So the thing about this is, you know, my parents were there, of course, and they were helping me that according to them, they were trying to get me to relax, and just like, deal with the fact that I have had multiple strokes. And you know, they’re cryptogenic. At that point, they didn’t know what the cause was. And I just had rehab.

Maria Sclafani 21:29
And I had a good reason not to go back to work for a while. But I wouldn’t do that I kept trying to get into my email, and then I would get the password wrong. And I would like lock myself out of the email. Because I had issues with typing and spelling, I’m, so then I would go to zoom meetings.

Maria Sclafani 21:53
And I would say, like, 50% of the time, I could follow along, but it was, it was pretty tricky. I didn’t like speak, I didn’t communicate or like contribute anything, but I just wanted to kind of be in the loop. Because it was October by this point. So it was a busy time in the semester.

Maria Sclafani 22:10
So I was like, kind of trying to juggle everything. Um, I mean, it took like a whole like two hours, to just figure out how to like, set up my out of office message on my email. My dad had to, like, help me and we had to figure out like, how to do it. So that faculty who were emailing me for help with stuff like found, you know, knew that I was on leave and not available and knew who to contact. But I was very insistent, on going back to work.

Bill Gasiamis 22:45
I remember my own condition being in that situation where you’re trying to type an email after, for me it was after the second major bleed, and then having to write an email for work and sitting in front of my computer and struggling probably for what was hours, hours and hours just to write a few lines.

Bill Gasiamis 23:06
And then not being aware of the time that it had taken me that that I had spent sitting there trying to write this email, and then I was getting nowhere. It was pretty intense to

Maria Sclafani 23:21
pretty much like, I was sort of like that, that time feels fuzzy in my memory. You know what I mean? Like, it’s not clear, it was all sort of like. So I think the benefit of working part time was that I just worked like a morning, like nine to one or something like that.

Maria Sclafani 23:47
And then I usually had, like therapies, I had multiple medical appointments. So then I had like, the whole, I could do those in the morning and go to work in the afternoon, or I could go to those in the morning and you know, whatever. I can sort of work it out either way. And sometimes I would like go into work for two hours and then leave and then come back and like do the other two hours.

Bill Gasiamis 24:14
Was fatigue an issue?

Maria Sclafani 24:16
Yeah. And the neurologist didn’t tell me about that. No one at the hospital told me about the fatigue. It was actually my physical therapist that said, Have you been taking naps? And I was like, why? And she was like, it’s important to take naps, you know, recovering from strokes.

Maria Sclafani 24:39
You’re gonna have a lot of fatigue. And I was just like, I think my mom was with me, and we were both just sort of like, Oh, we didn’t know that. And I had been trying to power through the day. Because in my mind, it was like, Well, I don’t want to take a nap that will disrupt my sleep cycle.

Maria Sclafani 24:57
I want to like you know make it through the day and go to bed early. But then I started taking the naps and working like a half day sort of allowed for that type of thing. I could take a nap at, like 3pm or something. And that really helped. But I was I’m surprised that it was a physical therapist who asked.

Recurrent stroke recovery and job security

Bill Gasiamis 25:22
Yeah, that was a lot of people don’t know to tell you about that kind of stuff. I don’t know why, but it’s not in the doctor’s part of the process to tell you about when you go home, these are the things you’re going to experience, I really don’t think they know what stroke survivors experience.

Bill Gasiamis 25:40
And it’s usually the rehabilitation people who know that because they try and rehabilitate you, and they see what you can and can’t do. And they see how quickly you might get wiped out after a physical exercise or some exertion in some way. So they see it, and then they have to deal with it.

Bill Gasiamis 25:57
And then they’ve got to kind of set you up to succeed. So helping you succeed. One way to do that, to help you succeed is to encourage you to sleep more during the day, it’s just to have those Nana naps, we call them here in Australia, or catnips. Yeah,

Maria Sclafani 26:14
yeah, um, those really helped with my recovery, and I would say I did those for a few months, because I went back to work. I’m gonna say, mid October, so like, probably four weeks after I had my strokes, full time.

Bill Gasiamis 26:38
Part time, part time again. Yeah. Yeah. I

Maria Sclafani 26:41
was very anxious to go back to work. But I also couldn’t really, you know, so my work agreed to let me work part time.

Bill Gasiamis 26:52
And you were 36 years old at the time? Yeah. And what was normal life? Like before the stroke? What did your day consist of? Were you in a relationship? Do you have a family? How did you go about life?

Maria Sclafani 27:13
Yeah, well, um, so I lived in Wichita for five years, I moved there in 2019. And I became a librarian a little later. So I was an adjunct professor of Writing and Rhetoric for five years at CU Boulder. And there’s no job security when you’re an adjunct at all. I mean, they literally don’t care if you, if you don’t come back the next semester, they actively were telling us at some point, like to take other jobs if we were offered them.

Maria Sclafani 27:48
So I was like, this is not, this is like a dead end, this isn’t going anywhere. For me, there’s no job security here. You know, I don’t have any, I didn’t have health insurance, which is why I stayed at that job. Um, you had to be all you had to teach two classes to qualify for health insurance.

Maria Sclafani 28:06
And a lot of universities in Colorado, it’s that you have to be teaching a full course load. So for classes to qualify for health insurance, so it was a big incentive for me, because it was also like university health insurance, it was good health insurance. Um, so I did that for five years. And then I was trying to think about what else I could do that would offer me more security. And so I figured out that I could go for two years, get a library science degree.

Maria Sclafani 28:36
And then I could work as an academic librarian, and I could do what I was basically already doing, which is teach students how to do research. So my department at CU worked really closely with the library. So a lot of principles of library instruction were built into the curriculum of the classes that I was teaching.

Maria Sclafani 28:56
So I was already familiar with them. So it was like a very easy transition. So I did that for two years 2017 to 2019. And then I, you know, graduated and I had a lot of job interviews, and I went to a lot of places and considered a lot of jobs. But then I eventually accepted the offer from Wichita State, and I went there in 2019.

Maria Sclafani 29:22
So I would say, you know, it was a little rough, in 2019, like 2019 to 2020 because that was leading into the pandemic, so I didn’t really have any friends other than my co workers who were all very nice people and they still are very nice people. You know, but I didn’t really like know anyone.

Maria Sclafani 29:44
I befriended my neighbor, Jesse, who ended up taking me to the hospital. And I was kind of like, just starting to like, join book clubs and like, go out a little more and explore when We shut the whole university shutdown March 2020.

Bill Gasiamis 30:06
Yeah, so how did you guys go about, we still employed in those times where you shut where the your workplace was shut down, we still able to be employed.

Maria Sclafani 30:18
So it was, it was pretty unusual in the state of Kansas at a university. For us, we stayed employed, and they didn’t. A lot of universities, I forget what they call it, but it’s like, they dock like 10% of your pay or something. Like you don’t work for a week, and then they can like not pay you for that week. So it works out for them.

Maria Sclafani 30:44
And a lot of people salaries are getting cut. So our salaries stayed the same. And I’m the administrators at the university, like the dean of the library, that administrators all agreed to just take two weeks off in the summer, so that they could save the university money, and that kind of balance things out.

Maria Sclafani 31:04
So we were working remotely, from March until May, the library was closed, like, not open to the public. You know, like, we were just fully remote, and then in May 2020, they insisted that we open.

Bill Gasiamis 31:24
Okay, so in May 2020, you’re back at work, that we

Maria Sclafani 31:29
actually continue to work remotely. So as a faculty librarian, I was able to, I’m able to do my job, I was able to do my job, like from home, like I could do emails from home, I could do instruction from home, like via zoom. And I could, we could do chat reference, which is basically you know, how we provided reference services during the pandemic was just virtual reference.

Maria Sclafani 31:55
And we could, we could do that from home too. So we kind of took these like four hour shifts, where like, you’d be on reference from like, nine to one, and then someone else would be a reference from one to five. So that was a big chunk of time, and you were just home.

Dealing with stroke long-term deficits

Maria Sclafani 32:10
So like, it was, it was fine. Um, so there were people that had to come into the library and work staff who had to physically be there. But we didn’t. And I don’t think we really went back until 2021 is when we were starting to go back in person.

Bill Gasiamis 32:34
Okay, so that didn’t really interfere with your stroke recovery or accessing services when you did have the stroke in 2022. What month was that? September, September. So it was everything kind of back to normal, work-wise. And pandemic wise.

Maria Sclafani 32:53
It was, but you know, it’s interesting, because, um, I was wearing a mask at work. So people couldn’t see that I had the left cheek was drooped. And we were having our meetings on Zoom, still are like department meetings, I guess we would have them like once every other week or whatever.

Maria Sclafani 33:14
And we were still doing those remotely. So like, people weren’t physically seeing my face in person, you know, it was still, like, removed a little bit. Um, so because we and I, we were all kind of wearing masks and being careful. That was 2022. I mean, because it just continued. It continued. So I mean, we just had to keep wearing masks, because the university insisted that we should open. Was

Bill Gasiamis 33:44
that an issue? Because then your colleagues didn’t quite understand what you were going through. And it was difficult for you to navigate that.

Maria Sclafani 33:52
Yeah. And, you know, it was interesting, because when I was in my apartment, and I was just like, with my neighbor, like, I didn’t wear a mask, because it was just the two of us. We weren’t like in a public, you know, in a library that was open to the public, where there were like, hundreds of people every day.

Maria Sclafani 34:09
So like, that was when she that’s when someone actually noticed when I wasn’t wearing a mask. And when I was with someone, and I was like, you know, sort of close. Um, my coworkers kind of knew something was going on, because I was like, you know, bursting into tears in a Zoom meeting and saying, I can’t do I don’t know what’s going on with me, but I need your help. I can’t do my job and all this stuff.

Maria Sclafani 34:32
So they knew something was up, but I told them what the doctor told me. I said, you know, Doctor says, I have a pinched nerve in my neck. So I guess this is what, this is what that looks like. So I think that they were concerned, certainly, but they didn’t. They were like, well, she’s young. You know, how bad can it be?

Bill Gasiamis 34:58
Yeah, How do you find people react to you? When you say you’ve had a stroke? Or a multiple strokes? How do they respond? People that don’t associate? Younger people with strokes? How do they deal with that?

Maria Sclafani 35:18
Usually, they’re surprised. They say, You’re so young, or they say you don’t. I didn’t, I didn’t have I would say I had some drop foot on my left foot afterwards. And the occupational therapy and physical therapy was helpful for that. And I had like weakness in my in my left arm. Um, but like, other than that, I don’t have any physical I guess, indicators or physical, whatever you would call them.

Bill Gasiamis 35:52
Deficits After Effects. Yeah. deficits, and therefore you don’t look like somebody who’s had a stroke, as well as a you’re too young, but you don’t look like you’ve had a stroke. And people just can’t connect the two.

Maria Sclafani 36:07
Yeah, so I would say there’s a lot of surprise. Usually elderly people, they have had strokes, or they know someone who’s had a stroke. And so they understand a little bit more. But I would say people that are young, under 50. They tend to be very surprised, and there was a woman I actually met, and I was having conversation with her in a bookstore.

Maria Sclafani 36:33
So it was just an informal conversation about books. Um, and because she came in looking for one book, and then habit and I told her, You know what, you should really get this other book by the same author, you know, so we started talking, and I said, you’ll probably be surprised by this.

Maria Sclafani 36:49
But I actually had multiple strokes. And that’s why I’ve moved back to Colorado to be near my family. And she said, I actually wouldn’t be surprised, because she said that when she was in college, one of her close friends had a stroke. And he was a runner. So it was completely out of the ordinary, and he was very healthy. And then he like collapsed one day.

Bill Gasiamis 37:13
Yeah, so it is common, but rare for younger people to have a stroke. And other people who are, have been luckily enough to escape stroke. And they’re as old as you were, or even older, might be surprised by that, especially if you don’t look like you’ve had a stroke stroke. Looks like people can’t walk properly.

Bill Gasiamis 37:36
It looks like there’s a problem with somebody’s arm. It looks like there’s a problem with the way their speech or their speak or the way that their mouth looks. And it looks like you’re recovered quite well. Do you have any ongoing long term deficits that you’re still overcoming or you’re working to overcome?

Maria Sclafani 37:56
Yeah, so I did actually leave my position at the University at the end of January. So technically, like, February 2, or something, but like, end of January, beginning of February, I left my position. Because I, I was going through a major depressive episode, which is probably like linked to brain damage from the strokes.

Executive function challenges after stroke

Maria Sclafani 38:20
But they were just throwing all sorts of meds at me and we couldn’t get good mental health care in Wichita in Kansas at all. It’s just was terrible there. Um, so I decided to move back to Colorado, like, you know, without a job to move back to Colorado, just to be near my family. And I’m living with my parents right now. Um, and what was your question? Yeah, I think I answered your question.

Bill Gasiamis 38:48
I’m still deficits. Yeah,

Maria Sclafani 38:51
so executive functioning. So that was very damaged in the strokes. And I did go to see a neuro psychologist, and I actually went to see her.

Maria Sclafani 39:03
I requested that I’d be referred to a neuropsychologist after I listened to your podcast, because you interviewed someone who I want to say was from New Zealand, and it was a woman and she said that when she went to see her PCP, and there was like a history of stroke in her family, or it just it seemed likely that she’d had strokes or a stroke.

Maria Sclafani 39:26
She said, But I’m talking funny and her Her doctor said, but don’t all Kiwis talk funny. I think I remember. He felt bad about that and apologized to her and stuff. And I was like, that’s very similar to what happened to me because I asked my doctor, if it was possible that I had meningitis because of the terrible headache, and that’s just all you hear about meningitis.

Maria Sclafani 39:55
I mean, it’s mostly with college students, but like, you just hear that they have a terrible headache. And then they go to bed and they don’t wake up. So I was very, I think, understandably paranoid considering what had actually happened. But I was very paranoid. And I asked her if I had meningitis if it was possible. And she basically said, No, you would be like, a lot sicker than you are. If you had meningitis.

Bill Gasiamis 40:19
Yeah, it’s a little bit more debilitating, because I think it affects the whole brain because the infection makes the brain swell, and then causes real major challenges really quickly.

Bill Gasiamis 40:32
So with executive function, according to Google search, the phrase executive function refers to a set of skills, these skills underlie the capacity to plan ahead and make goals, display self control, follow multiple step directions, even when interrupted and stay focused, despite distractions, amongst others. So does that description describe the things that you’re challenging that you’re finding challenging to deal with?

Maria Sclafani 41:08
Yeah, so I think my job required a lot of executive functioning. My title was actually the coordinator of library instructional services, which is a long title. And so I had to coordinate a lot of things. I coordinated a workshop series, I coordinated instruction for a first year writing class, the librarians would teach one library session for all of the sections of that class.

Maria Sclafani 41:35
And I was responsible for creating the lesson plan and doing an assessment of the students and all of that stuff. So I was really struggling when I went back full time, in this last fall, so fall 2023. So I went to the neuropsychologist, she said, You’re clear to go back to work, she did cognitive assessments of me.

Maria Sclafani 42:00
And she said that my limits were in my executive functioning. But she felt that as long as my job didn’t require me to be able to respond to things quickly, her example was like an air traffic control person. Like she was like, if your job was doing like air traffic control, you wouldn’t be able to go back to work. But your job does not require that kind of like, you know, split second thinking, so I think you should be fine.

Maria Sclafani 42:29
And, you know, I think I was just in the fall in like, September, November, October, I guess, um, I was like struggling with things that I didn’t struggle with before my strokes. And I honestly think that I was in denial for quite a while after I had the stroke. So like, I knew I’d had them. But like, I was very determined to not let them affect my life.

Maria Sclafani 42:57
Like, I wanted to go back to how things were before. And my speech therapist and I actually stayed in speech therapy for a long time, I think I was in speech therapy for six months, from like, November, October until April. And she sort of tried to broach this topic with me of like, well, you know, you’re telling me about your job.

Work performance after stroke, and eventual resignation

Maria Sclafani 43:22
And it sounds very demanding. And I don’t know, if it’s something that you can continue to do with the limitations that you have, you have limitations with attention, focus, you know, like, remember memory, like all of these things that, you know, we’re working on, it seems like that would affect your ability to do this job that you have. And I think I just found that that was in fact true. I mean, she was right.

Bill Gasiamis 43:53
But was that evidence, evidence that it was true? For example, were your colleagues commenting on your ability to carry out your work tasks? Was anyone saying she’s not pulling her weight? Anyone giving you any feedback whatsoever?

Maria Sclafani 44:10
No, I think and I don’t know. Um, so what I do know is that I was dropping the ball on a lot of things. So I would write myself a to do list. And I would write, like, you know, email, so and so or, like, download these sheets, these responses and email them to faculty. And then like, a week later, I would look at that, and I’d be like, Oh, I didn’t do that.

Maria Sclafani 44:34
I’ll do it later. And then a week later, it was just the same thing over and over and over again. And you know, then it’s like November, and I actually took FMLA leave to take to stay at home because I was not functioning. And I was like, it’s how was it November and I haven’t done this thing that I was supposed to do in September, like, what happened and so yeah, it was sort of like See, the signs were there.

Maria Sclafani 45:02
But, um, I think that because I was a very reliable and responsible employee, um, everyone just assumed I was still fine. Because I came back to work. And I said, I was fine. And I, you know, I spoke to my supervisor, and I said, because I had to ask them, to allow me to work part time for the rest of that year 2022.

Maria Sclafani 45:27
So I actually worked part time from when I got back to work in October, until May. So the rest of the semester, and, you know, I said, I want to get this cognitive assessment done, you know, and make sure before, before I actually go back to full time, and he said, that was fine.

Maria Sclafani 45:46
So I did that. And then, you know, when we spoke later, he said, you know, Maria, you’re not one of those employees that, like, people are continually saying that you’re never here.

Maria Sclafani 45:59
You know, that is a, that can be a problem with some librarians and I have had, you know, co-workers and colleagues and stuff that that has been an issue with them, or they’re just never in their office, and faculty come looking for them, and you don’t know where they are, and all of that stuff.

Maria Sclafani 46:16
And because I was, I was still coming every day. Even though I went back to working part-time. In December, I think I went back in December, and I went back to work working part time, like, I was still coming every day and like, emailing my supervisor and keeping him updated about things. I

Bill Gasiamis 46:35
think, notice your absence, and therefore, they didn’t really clue on to the fact that you were not at your best performance. Performing the best, you probably knew that more than they did, you may have had comparison of your previous capability, and then your newest capability, and you’re going in with something not right there. Yeah,

Maria Sclafani 47:01
and I think I thought that, if I like worked hard enough, I could fix it. Like, I could get back to the way it was before. So there was there was a lot of denial happening. Um, and it was actually, you know, me, I didn’t get fired.

Maria Sclafani 47:20
You know, it was me that chose to leave my job and resign, um, you know, and I was very, like, conflicted about that at the time, but I was like, Okay, I can’t continue to do this job anymore. This was in early 2024. So like, January, I was like, I can’t I’m not doing my job right now.

Maria Sclafani 47:43
You know, and my coworkers, they’re all have taken on some of my responsibilities, my duties, like, and we were working on changing my job description, so that, like, my duties would change so that my job was more manageable for me, which I appreciate very much. I think Wichita State was very, what’s the word I want? accommodated? Yes, thank you.

Maria Sclafani 48:08
Um, they were very accommodating, they worked really well with me on things. So that was all happening in January. And I was like, at this point, I’m not really even doing my job anymore. My coworkers are doing my job. So it’s not like, I’m doing it. And then if I leave, there’s someone to do it. They’re already doing it.

Maria Sclafani 48:29
So why am I here? You know, I don’t know. And I was, I was pretty rough. By the end, by the end of January, I was really not functioning. I was on mood stabiliser. Um, and, you know, subsequently after going off of it, things changed a lot for me. And the psychiatrist, doctor who prescribed that medication said, you know, I think maybe it wasn’t, wasn’t good for you. Like, yeah, maybe it wasn’t good for me.

Maria Sclafani 49:03
Um, because they, I think that they looked at these issues, I was having these impulsive decisions, and like, issues with coordinating my schedule and all of this stuff. And they were like, Oh, this is you know, she’s she’s not being consistent. There’s some kind of mental health issue here. So they were trying to treat that without really considering what the how much was caused by the stroke. You know what I mean? Strokes plural.

Experiences with fatigue and its impact on daily life

Bill Gasiamis 49:37
They underestimated the possibility that stroke was causing mental health issues, or was the kind of thing that needed to be resolved or to help support you in that space so that you could be better mentally. It’s not necessarily I woke up and I had mental health issues.

Bill Gasiamis 49:59
There was another cause, but sometimes people in those types of spaces don’t look at, they look at the symptoms, right, and they don’t look at the cause. And then they treat the symptoms, here’s a medication, and hopefully the symptom that you’re feeling, or the thoughts that you’re having, or the challenges that you’ve got will go away, if we give you this thing, and then it gives you a temporary reprieve from the symptoms, but it never has actually dealt with the root cause. Yeah,

Maria Sclafani 50:34
because I really felt I felt very flattened. Like, I didn’t feel like I had a lot of energy, or motivation, I couldn’t even like really be expressive with my face at some point. Like, I was just monotone. And like, because it felt like, and I would talk to people, and I could tell, you know, like, that they were expecting something different from me, and I couldn’t give it to them.

Maria Sclafani 51:01
And I was like, I don’t, it’s like, it’s like I’ve run out of like a bat have run out of battery, like I don’t have anything left to like, be animated, and like, you know, make eye contact with you and do all of these things that would indicate to you that I’m listening and that I’m, you know, paying attention and active.

Maria Sclafani 51:21
And so, you know, at that point, I was just totally depleted. And I would say I was barely speaking. I mean, I would answer questions when I was asked, but I’m a very talkative person. And I was like, barely speaking,

Bill Gasiamis 51:35
you described that really well, running out of battery, a lot of stroke survivors use that term, to describe what happens when they’re fatigued. And I’ve even seen an image, you know, some stroke survivors have typed an image with, you know, the battery indicator that shows, you know, five green bars, and then three of the green bars are missing, and there’s only two left.

Bill Gasiamis 51:59
And then it’s like, I don’t, I’m conserving the rest of the energy of that barrel to get through the rest of the day. And it’s only midday. So if you’re expecting me to talk or respond or laugh, or laugh, I’m probably not going to be and it’s nothing to do with you. It’s just got to do with how I feel. But people who don’t have been through what we’ve been through, don’t can’t grasp it that don’t get it. Yeah,

Maria Sclafani 52:26
and that made me like, not want to be at work. And I mean, working part time helped with that. But, um, the way things were at Wichita State was that they wanted us in the library, who were those of us who worked in library to still be in the library, five days a week, in person. Yeah, the extent that we could. And that is not the case at other academic libraries.

Bill Gasiamis 52:51
Uh huh. And you’re dealing with details that are pretty full on like people want to know, you want you to direct them to a piece of literature that is related to something that they are trying to get to the bottom of, or to research. And that requires a lot of brain energy, as well as that you’re doing that for multiple people that they wouldn’t be just for one person.

Bill Gasiamis 53:18
And then that would be you know, I remember what it was like just trying to write my book, or I remember the struggle of sitting there and trying to find data to come to support my statements, and how long and how difficult and how arduous that was. And I’d never gone to university or studied for a degree or anything like that.

Bill Gasiamis 53:48
So I didn’t understand the extent of the effort that you had to put in. But I went, it took and that’s what took me a good part of two years to do. Like it took me two years to get to the point where I was able to gather all the information on this book that I was writing, and it and I found that I did that.

Bill Gasiamis 54:13
If I wasn’t working constantly for two years, what I was doing was picking my moments so that if I had a good two weeks of energy, I would work as much as I could and get as much done in that two weeks because then I knew there was another three or four weeks coming up when nothing was gonna get done.

Maria Sclafani 54:32
Yeah, yeah. And you know, what was interesting for me after the strokes was you know, why went back to work part time. But my job was very much I remember speaking to a co worker at one time and I was like, it’s tough because like, I have, you know, permission I am allowed to be here half time, um, and we’re in the university figured out a way to get me paid For those other four hours that it wasn’t, because I was out of paid leave at that point.

Maria Sclafani 55:07
So there was a program for the state of Kansas that I could apply for, and I did. And they would allow me to work for four hours a day, and the other four would be covered. But like, I was like, okay, but like, this job, like, it doesn’t reduce the amount of work I have, you know, like working for us a day doesn’t change the fact that, like, I have other stuff I need to do.

Maria Sclafani 55:33
And I just not doing it, you know, so that was kind of hard, like, I was getting emails from faculty and requests to do instruction and all of this stuff. And I had to kind of like, figure out what to prioritize, like, what I had energy for. And I actually, I really appreciate my co workers at Wichita, because every time I ask them for help, they helped me. And so I actually team taught, like, you know, two of us teaching maybe three or four times in the spring semester.

Maria Sclafani 56:07
So that would have been 2023, in the spring, because I had these classes scheduled that had been scheduled in the fall. And I, you know, couldn’t, I didn’t feel confident enough teaching them on my own. Because teaching is very much like you can’t hide like, you’re there and the students see, and if you don’t know the answer to something they can tell. And so yeah, and so I had a co worker teach with me each time that I taught.

Maria Sclafani 56:42
And that really helped me feel like okay, this is manageable, and they would also kind of like, maybe step in or like answer questions, or, you know, kind of supplement add to, you know, stuff that I’d missed. And that was helpful. But, um, so in, technically, the field that I’m in is library, and information science. Um, and I don’t think a lot of people really know what that is. Especially not in America.

Maria Sclafani 57:14
I mean, when I tell people that I’m a librarian, the first response is like, Well, what do people even read books anymore? Like, do they even need libraries? And I have to be like, they they do they do read? And people need libraries, and they use libraries for things other than reading, you know?

Maria Sclafani 57:38
Yeah, so then people are surprised that there’s actually programs, there’s no library schools, that I, you know, I would sort of say, Oh, I went to library school as in, like, I went to a university and got a graduate degree in Library Information Science. And they’re always like, surprised by that. And I’m like, What did you even study? And it is about, so one field is information behavior. So that’s how people seek out information.

Maria Sclafani 58:08
And there’s lots of like, models, I have a whole textbook of models of how people seek out information, because it’s a very popular field. Um, and so part of that is information seeking. So like, you know, when someone comes into the library, they’re seeking information, you know, how do they how do they go about doing that? So one concept that actually is pretty popular is the concept of serendipity.

Maria Sclafani 58:34
So that’s like, when faculty usually do this, I would say, students don’t usually go into this to x to get books. It’s usually faculty or grad students, they’ll go to retrieve a book. And they want to have the call number, the Library of Congress call number, which is what we use in academic libraries.

Maria Sclafani 58:53
And they want that they want that specifically, they don’t want to put in a request and have that book pulled for them, which they can do. I did it all the time. You know, I had books pulled for me, but they want to go in and they want to look at all the books that are cataloged, you know, like shelved next to that book, because they’re going to be about the same topic.

Bill Gasiamis 59:15
So they have an idea for a book, because there’s perhaps a piece of literature that they’re familiar with by a particular author. And then they know that if I go to that particular author, to the left, and to the right of that author, there’s gonna be a whole bunch of other authors that talk about the same type of topic.

Maria Sclafani 59:37
Yeah, and so that’s called, oh, sorry. That’s just an alarm on my phone. Um, that is, um, that’s like the idea of serendipity. Like, it seems, at least to you when you’re going in and looking at these call numbers that you find books like, serendipitously, like just there is but it’s not, you know, it’s not really serendipity because it’s actually, like they’re, they’re placed next to each other for a reason.

Maria Sclafani 1:00:07
Because they, you know, belong in that certain section. So, I, as a librarian was like, very fascinated with how I, as a stroke survivor had to figure out how to find information about strokes.

Maria Sclafani 1:00:26
Like what to do. I mean, I, you know, I was lost, I think a lot of stroke survivors are lost, like you have your physical therapist or occupational therapists, whoever, you know, your rehab people are, but like, I mean, my neurologist was not very responsive. To put it, like, politely, he tried to cancel an appointment once, because he wanted to go on vacation.

Bill Gasiamis 1:00:54
Your neurologist wasn’t very responsive to your need for follow up for information. What was?

Maria Sclafani 1:01:04
Yeah, so in the appointments, if one was only last 15 or 20 minutes, and I would ask things like, Am I more likely to have another stroke seems like something I should be concerned about. And he would say, you’re more likely to have a stroke now than you were, before you had your first stroke.

Bill Gasiamis 1:01:28
To stick with somebody who’s had an ischemic stroke is very much more risk of another stroke after the first one. Neurologists tend not to do a lot of the kind of work that we hoped they would do a lot of shock survivors go back to neurologists for information, and they don’t get a lot of satisfaction.

Bill Gasiamis 1:01:48
And it’s not because the neurologists don’t have, I think they just go, we go to them for the wrong reasons. Usually neurologists work with a medical team, they can look at a scan, and they can say, this is what it looks like, has happened, you know, there’s some courses of action that you might want to take, but they’re really an intermediary between you and the doctors, and they don’t really do much with the patient, other than perhaps check in on you, and just see how things are going and understand that level of that level of kind of where you’re at.

Bill Gasiamis 1:02:26
But they don’t really get involved with much of the medical side of the process. And I suppose what they might be best doing sometimes is referring you along to other people who are more likely to help if they know who to refer to.

Maria Sclafani 1:02:44
Yeah, and he, um, I asked him, I also asked him how many strokes I’d had, because at the hospital, they just kept saying multiple. And he said that it didn’t matter how many strokes I’d had that, you know, my brain had just been damaged in some way. And it was gonna, like, you know, and I asked the question, like, you know, well, can I go back and do my job? You know, can I go back to work? And he was like, I don’t know.

Challenges in accessing neuropsychological evaluations

Bill Gasiamis 1:03:12
Yeah. He is, it’s for Neuro psych, to evaluate your ability, for example, if whether or not your executive function is up to the task or not. And that’s the thing, it’s like, when you’re a stroke survivor, you don’t know where to go and who to get information from.

Bill Gasiamis 1:03:29
So you ask the person that you came across the first time, which might have been a doctor, or a neurologist, and you hope that they can be a little more forth, coming with at least some kind of feedback other than them be blank and say, I don’t know. And even though that’s the truth, and maybe the answer should be, I don’t know.

Bill Gasiamis 1:03:55
And then, I don’t know, but I don’t know and maybe, and then just sort of give you guidance as to where to start the conversation with the next person who the next person might be. That’s the part that I struggle with. This so specialized, they have no idea who else can support a stroke survivor in their recovery. And even if they get it wrong, and they say you need to go and see a neuro Psych.

Bill Gasiamis 1:04:22
And perhaps it wasn’t a neuro psych that you needed to say, Well, who cares? It at least you’re you’re going through the process of getting the conversation started and you’re ticking off things, and then you’re narrowing down who it is that’s going to be more likely to be able to support you and help you overcome those challenges, whatever they are physical, for some people, cognitive bothers speech for others.

Bill Gasiamis 1:04:51
So they can it is a little bit disappointing. Some people do get disappointed with their neurologist but it’s because we act expect too much from them. And we don’t know where, where else to go. That’s the thing that I found I had

Maria Sclafani 1:05:08
to actually ask him to refer me to the neuro psychologist. Yeah. But you know, because of your podcast then. So I mean, I mean, I had to information seek, and I found your podcast because I listened to podcasts anyway. So I was like, okay, so if I listen to podcasts anyway, why don’t I search and see if there’s any stroke podcasts.

Maria Sclafani 1:05:30
And I found your podcast. And I think I discovered the American Stroke Association website, they have a warm line that you can call, so you call and you leave a message, and someone will call you back in a few days. I utilize that. But I, you know, I actually ended up buying hope after stroke, that book by the doctor that you interviewed, and I listened to that interview, and then I went out and I bought the book, and I told my mom that she had to buy it.

Maria Sclafani 1:06:06
So we have two copies now, but you know, because I was like, finally, you know, like actual something about what to do after a stroke. And so I was kind of like, just doing what like a librarian does. I like, found a podcast, I found a book, I found out about the neuro psychologist. And she asked me when I met with her, you know, she said, Well, how are you referred here? You know, why did your neurologist refer you?

Maria Sclafani 1:06:37
And I said, he didn’t actually I had to call and request that he referred me. And his nurse said she didn’t know what a neuropsychologist was. So yeah, and you know, there was a lack of neurologists in Wichita, which is apparently like a well known problem. You don’t find that out until after you need a neurologist.

Maria Sclafani 1:07:05
But there also was a lack of neural psychologists. So I just went to one. And she told me that she was the only one other than the one that worked at the VA, and he could only work with veterans. Wow. Wow was like the only option. And fortunately, she was very nice, you know, and very helpful.

Bill Gasiamis 1:07:23
And problem worldwide. Like in Australia, if you have an appointment to see neurologist, if it’s through the public system. Not a neurologist, a neuro psychologist, you could wait nine months to see a neuro Psych. It’s such a long time to wait when you’re in dire straits, and you’re not thinking properly and you don’t know how to help yourself.

Bill Gasiamis 1:07:48
And I remember waiting nine months for me to see a neuro psychologist after my counselor suggested I see neuro Psych. My, my psychologist, suggested that I say neuro psych because she realized in our conversations that there was things amiss, and that I wasn’t able to begin and finish sentences.

Bill Gasiamis 1:08:09
And what I didn’t know. Because we just weren’t thinking straight. What I didn’t know was that I could get a private appointment to say, a neuro Psych and pay $500 or more, or whatever it was, at the time. And speed up that process and get to see them sooner so that they could help me quicker. I didn’t know that you could do that.

Bill Gasiamis 1:08:37
But the test for a neuro psych evaluation is such a long process and the report writing later on is such a long process that what I realized recently to see a neuro Psych and to get a neuro psychological assessment done, it can be up to about $2,000. So it’s prohibitive from a cost perspective, especially when you’ve had a stroke and money’s an issue.

Bill Gasiamis 1:09:04
And then it’s also you need to know you need to get lucky and find the right piece of information to tell you that you should see a neuro Psych and then you need to learn what a neuro psych does and how they’re different from a psychologist and what their role is in supporting you.

Bill Gasiamis 1:09:21
And it’s such a jigsaw puzzle and such a you know, it’s such a task to just work out all those things, and I never had podcasts listened to. I didn’t have many books to read and write when I started going through this. So I had to really uncover it myself. One of our biggest tasks was research.

Bill Gasiamis 1:09:44
I think our biggest task in this recovery process was research and and then hitting brick walls when you took that research to your doctor and then they didn’t know what the hell you’re talking about because Nobody had ever gone to them with a bit of information about stroke, and they were just a general practitioner, and they hoped you would just go to the next person and the next person would help you and no better off not having you in their practice. That’s how I felt anyway. Yeah.

Maria Sclafani 1:10:18
I certainly felt that way. A little bit. The neurologist eventually referred me to a vascular specialist. And he said, You know, so I think I think we’re done. You don’t need to continue to see me, I think you have to go see this vascular surgeon. Because they discovered or determined, I should say, the cause of my strokes. It was a dissection in my carotid artery. On my right side.

Bill Gasiamis 1:10:49
Ah, wow. Okay.

Maria Sclafani 1:10:52
So that was in January. So I had the strokes in September, and then they waited a few months to then do a CT scan a follow up CT scan in January. And they got the results. And he said, so it’s clear, you know, now that there’s not like a bunch of blood and stuff in the CT scan, we can see that you have.

Maria Sclafani 1:11:14
So he said it was a pseudo aneurysm. So not an aneurysm, but just like a bump or an abnormality in my arm in my carotid artery and actually have one in both carotid arteries on the right and the left.

Bill Gasiamis 1:11:31
So have you been diagnosed a blood thinner, not diagnosed prescribed a blood thinner.

Maria Sclafani 1:11:37
I was. And so I was prescribed a blood thinner after the strokes and baby aspirin. And they told me after they figured out the cause to stay on the baby aspirin, and to go off of the Plavix, or, you know, whatever it was so, and they said, I would have to be on that for the rest of my life, which is fine. You know, yeah,

Bill Gasiamis 1:12:00
it’s a small price to pay to have to decrease dramatically your risk of another clot. Did it help when you found out what the cause was? Did that kind of help?

Maria Sclafani 1:12:14
It did a little bit, but it was kind of frustrating, because, you know, first off my family, and my parents are scientists, so they know a little bit. My dad worked at the Med med school. So University of Colorado Health Sciences Center, which is based in Aurora and Colorado, so he worked there.

Maria Sclafani 1:12:35
So he like knows a lot of doctors. But he’s not a doctor himself. And so we were like, What is a pseudo aneurysm? Like, we’ve never even heard of that. And then it was sort of like, okay, what’s a dissection? Didn’t know what that was, you know? And then what is this mean? And by the time I made it to the vascular specialist, it was a few months.

Maria Sclafani 1:12:58
And he was very nice. And he said, you know, this could be fibromuscular dysplasia. But it might not be, there isn’t really a test for FMD. So I can’t give you a test. And my recommendation is just that we monitor it.

Bill Gasiamis 1:13:19
Yeah, that’s okay. That’s good. That is a really good outcome. Now that, you know, its cause and you have somebody who knows about these things, and that they can help you monitor it and keep an eye on it. That’s a really good outcome. I like that. What was the hardest thing about stroke for you?

Maria Sclafani 1:13:42
I think it was actually, like, basically, maybe a year after the strokes. When I got this, I went through this depressive episode. And because I convinced myself that I recovered from the strokes and I was fine. That’s what you know, like, the whole summer, the previous that summer had been like, great. And, you know, my brother had a baby.

Maria Sclafani 1:14:08
So I have a nephew and so like, you’re all excited about that, and all this stuff. And so, I you know, I traveled all summer, you know, I done really well, I got to see a bunch of people. So I felt like I’d recovered. So like, it was over. And then it was like, Okay, maybe, maybe it’s not over. You know, it’s not something that I can like be I guess it’s not something that I can like, you know, overcome. I think maybe this is just how I am now.

Bill Gasiamis 1:14:47
So what I was gonna say what has stroke taught you?

Learning patience and adapting after a recurrent stroke

Maria Sclafani 1:14:56
Um, so I would say that and I get asked this kind of a lot. But I get asked some variation of that question. But I think that I was very judgmental before I had my strokes of other people. I didn’t have a lot of patience. And I, it was sort of like, well, if I can do it, then why can’t you do it, that kind of attitude. And, I mean, I’m a very type A personality, like, I was, like, you know, did very well in high school.

Maria Sclafani 1:15:31
And then I went to a good school for unit for college, I went to a women’s college actually. And I got straight A’s there. And then I wrote a thesis, and I got, you know, did well on my thesis, and I went to grad school in Colorado, and I got straight A’s in grad school. And then I went back to grad school. For library science, you’re gonna get straight A’s there. So I felt like I like knew, you know, I knew everything.

Maria Sclafani 1:15:58
And I didn’t understand why more people couldn’t be like me, or whatever. I don’t know a better way to put it. But I feel like I was very harsh. And I think it created some problems for me when I started my job, because that was my first library job. Out of library school was Wichita State.

Maria Sclafani 1:16:19
So I had never, like I worked in a library at University of Illinois, which is where I went for my degree, I worked as a graduate assistant. So I did work in a library there. But this was like my first time, having a full time tenure track, faculty librarian position. And so I think there was some ruffled feathers at first.

Maria Sclafani 1:16:44
But after the strokes, it was like, I couldn’t do anything. Like I couldn’t really do much. I couldn’t teach, you know, I had trouble with reference. Um, I had trouble getting dressed, you know, had trouble putting on clothing. And like, you know, one time I showed up to the Reference Desk to do my shift. And it was like, 130, and my coworker was like, What are you doing here? And I was like, Oh, my shift starts at two.

Maria Sclafani 1:17:16
And he was like, right? It’s 130. And I was like, Oh, I wanted to get here early, like that sense of time, you know? And it was just like, like, it was like, Okay, well, I’d want to like leave my office probably at like, maybe 151 55. So I could walk over to the desk and be there by two, but like, I just left at 130. So it was stuff like that, that I then needed other people’s help with. Because I couldn’t do everything. I wasn’t like a smarty pants anymore.

Bill Gasiamis 1:17:51
anymore. Yeah. Yeah. That’s a pretty big lesson. And it’s understandable. Love shrinks by this say that they learned to be more patient with other people. And they had a deeper understanding of what it was like to be somebody who was struggling. I certainly had to live in a wheelchair for a short amount of time, probably about three and a half, four weeks.

Bill Gasiamis 1:18:14
And then I quickly understood that people in wheelchairs are not just sitting down, which is what I assumed they were doing, they were just sitting there no big deal. It didn’t mean anything. This is pretty crazy, that I had to learn that way. But I’m glad I learned that.

Bill Gasiamis 1:18:30
So there’ll be people listening, hoping to get a little bit of a nugget out of this episode, if you already haven’t picked up a few. What would you say to somebody who’s just started their recovery? And are going through this and struggling a little bit? Well? Or would you be one, maybe one piece of advice you could leave them with?

Maria Sclafani 1:18:53
I would say, um, take your time, in recovery, don’t let anyone rush you. And don’t rush yourself. Because I very much did that. Like, you know, my parents were trying to get me to slow down and I was just like, trying to get right back to work and do all this stuff. But you have to take the time. Um, because and I had to actually go to therapy to learn this.

Maria Sclafani 1:19:17
But like, sometimes your plan A doesn’t work out for like, whatever reason, and My Plan A was like, getting a tenure track faculty position at a university and then going up for tenure. And hopefully, like, right, getting tenure and having job security for life. And that is not it’s not going to happen. It’s not I’m a different person now.

Maria Sclafani 1:19:41
So I have to come up with the plan B of like, what I’m going to do now that I have these limitations or whatever you want to call them with my executive functioning and issues with mental health and things like that. Because I think if I had taken the time to really process what had happened to me, and maybe stayed away from work, like, for longer.

Maria Sclafani 1:20:09
Because I think that, you know, the reality is that they would have gotten on without me, like, you know, like it wouldn’t, the library would not have fallen apart, like they would have been able to continue to function, it didn’t actually need me, I could have stayed home for longer and decided, you know, do I want to do this job or not, because I have been told, and this is all informal.

Maria Sclafani 1:20:33
But I’ve been told that if I had applied for disability, before I went back to work, I would have probably qualified for it easily, because of the fact that I had this extensive brain damage. And they told me, I think two or three parts of my brain, like the front, whatever this is, and then the back, like, you know, major parts of my brain that I would have gotten disability easily. But you couldn’t have told me that at that time.

Maria Sclafani 1:21:09
Because I was like, very focused on going back to work. And so I went back to work, and then you know, I don’t have that job now. But I have other things going on. And I probably will continue to, like, have jobs or work at some to some degree.

Maria Sclafani 1:21:26
But I realized that I have to, like, have different types of jobs that are more flexible, that like allow me to maybe work remotely on certain days when I’m not feeling well, or having mental health struggles, or, you know, to work part time jobs. Because health insurance is a big thing. And until the Affordable Care Act was passed in the US, I mean, like you had to have a job to have health insurance. And now that’s not the case.

Maria Sclafani 1:21:57
And I’m for the first time benefiting from that. Because I do have, I do have income. I have some from January. And I also like have, you know, other jobs and other things I’ve been doing. So I qualify for health insurance through the Affordable Care Act. And now I don’t have to worry about getting a full time job.

Maria Sclafani 1:22:18
So I can have health insurance. I can just like work part time. Yeah, you know, but I really created a lot of stress for myself, and like strife and struggle. So like all the s words, by like not taking the time after the strokes to really process them.

Bill Gasiamis 1:22:44
Yeah, that’s excellent advice. Maria, thank you so much for reaching out. And being on the podcast, I really appreciate it.

Maria Sclafani 1:22:53
Well, I want to thank you for doing the podcast, as like a stroke survivor and a listener of the podcast, you know, I think it’s really important and significant.

Maria Sclafani 1:23:03
And you have said that like you do it, because you feel like there’s this lack, like this, this gap between like, advice people get when they have the strokes and then like, what do they do like after like, there’s nothing to help them. And the people that need this information, like aren’t aren’t necessarily getting the stroke prevention information. So like, this is a way to provide that information. Like, you know, who knew about stroke? ambulances? Yeah,

Bill Gasiamis 1:23:35
who knew about all the things that have been discussed in the last 300? And something episodes? I mean, yeah, I certainly didn’t, I didn’t need to know. So I was oblivious, and you know, comfortably oblivious, no problem I didn’t need to know. So. But I was in dire straits, you know, at one point, and I needed information, and I still need information. And I feel like it’s necessary for other people to have information.

Bill Gasiamis 1:24:05
And I think it’s part of my role now. And also, the need to talk to people that are going through what I’m going through, because as much as a long time has elapsed since my first incident, it was 12 years ago. And nobody wants Nobody that I know, still wants to hear me talk about it for 1212 years on. No one really does.

Bill Gasiamis 1:24:30
And it’s not saying anything about them. It’s just that it gets boring when I talk about it to my family and friends all the time and all that kind of stuff. Like it’s just they can’t. Yeah, they’re all thankfully, healthy and well, and I cannot relate and, you know, it’s your own territory if I start talking about that kind of stuff with them, so I need other people to talk to about it. It’s the thing I like, the most is I lack people who understand me.

Bill Gasiamis 1:25:07
And I find that I get them on the podcast. They understand me, I understand them. And I, and that makes my life a little easier and my mental health a little better. And I also feel like I’m being useful. And I couldn’t do without you guys. So you know, being again, me talking about stroke on my own on a podcast to the world would be pretty boring.

Bill Gasiamis 1:25:35
You know, I need other guests. And I’m so glad that I reached out on Instagram and got inundated now I’ve got the work ahead of me. I got inundated. I’m not kidding you. Like, I think I had 30 responses. Usually, that’s 30 episodes. And that’s half more than half of the year. So, you know, thank you for acknowledging me. I really appreciate it. But I want to acknowledge you guys as well, like it’s a team effort. Yeah.

Maria Sclafani 1:26:08
Well, I think what people need most generally is to not feel alone. Yeah, you know, and this really helps with that this type of podcast and

Bill Gasiamis 1:26:19
I’m glad. Thank you for being on the podcast.

Maria Sclafani 1:26:22
Thank you so much for having me. Well,

Bill Gasiamis 1:26:24
thanks again for joining us on today’s episode. I hope you enjoyed my chat with Maria, and found inspiration in her journey of advocating for proper medical care, and overcoming the challenges of stroke recovery. If you’re interested in my book about stroke recovery, you can grab a copy on Amazon by visit or by visiting recoveryafterstroke.com/book.

Bill Gasiamis 1:26:47
To learn more about Maria, including her social media links and to download the full transcript of the interview, head over to recoveryafterstroke.com/episodes. A huge thank you to everyone who has left a review it means the world to me. Reviews are crucial for podcasts to thrive, and feedback helps others find this valuable content, making their stroke recovery journey a little easier.

Bill Gasiamis 1:27:14
If you haven’t left a review yet, please consider leaving a five star review and a few words about what the show means to you on iTunes, and Spotify. If you are watching on YouTube, leave a comment below, like the episode and subscribe to the show on your preferred platform to get notifications of future episodes. If you are a stroke survivor with a story to share, come and join me on the show The interviews are unscripted, and you do not require to plan for them.

Bill Gasiamis 1:27:45
Just be yourself and share your experience and help others in a similar situation to you. If you have a commercial product that supports stroke survivors in their recovery, you can join me on a sponsored episode of the show. Just visit recoveryafterstroke.com/contact Fill out the form and I will get back to you with details on how we can connect via zoom. Thanks again for being here and listening. I truly appreciate you see you on the next episode.

Intro 1:28:12
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