Young Stroke Survivor Series: Valerie

Meet Valerie, who had a stroke in her 30s, despite a healthy lifestyle. Her care got delayed as strokes are usually thought to be a disease of advanced age. Approximately 10-15% of strokes happen to adults between the ages of 18-50. Zeit Medical is doing an interview series with young stroke survivors to bring awareness to strokes in this age group.

Zeit Medical

I appreciate you willing to take some time to chat with me today. I’m really looking forward to this opportunity to talk to you more. How old were you and you had your first stroke?‍

Valerie‍

My first stroke was when I was about 36. It went undiagnosed and untreated though I didn't find out about it until after I had the second major stroke when I was 37.‍

‍

Zeit Medical

‍What were you doing in life at 36?‍

Valerie‍

When I was 36 I was the program specialist over crisis services, over services for the mobile crisis unit, and the crisis hotlines for mental health for the state of Texas.‍

‍

Zeit Medical‍

So what happened when you had your first stroke?‍

Valerie‍

I had this really intense headache. I was seeing glittering triangles around my peripheral vision and suddenly, my vision went out. I could still move and everything but I couldn't see at all. So I couldn't call for help. Luckily, I worked from home. So I just had to lay down and wait it out. I didn't know what it was. It finally went away and I went to an urgent care for help. I drove myself and they told me it was just a migraine. I was like that wasn’t a migraine. So I went to a different urgent care and they told me it was occipital neuralgia. I was like that wasn't a pinched nerve in my scalp. Nobody really helped me and I was just kinda like, I guess I'll wait for this to get life-threatening.

From that moment on I noticed I had a lot of weakness in my left leg. A lot of the previous injuries in my left leg started acting up and I lost a lot of strength in it. I had a complete backtrack in my physical therapy for my hip that nobody could really explain. So that was kind of what happened after that first stroke and that first distinct headache.‍‍

‍

‍Zeit Medical‍

How long did you have the weakness and other symptoms for?‍

Valerie

‍I had the weakness all the way through. I still, it's a lot better now since I got on a program from the second stroke, but I've had it all the way through to now.‍

‍

Zeit Medical‍

What was the time interval between the first and second stroke?‍

Valerie‍

It was about ten months. By the time the second stroke hit, I had left working at the state and gone into private practice. I'm a therapist and I was a boxing coach too. I was coaching kids and adults. A similar thing happened in June. I was at work and I got this really intense headache in the back of my head. It was like a pressure headache. My neck got stiff. I couldn't turn my head at all. I was having some visual disturbances but my vision didn't go out.

I had been given migraine medicine by that point. So, I got home from work and I took them, but it didn't go away. I was walking in the middle of the night and something again popped in the back of my head. I could feel it and it felt like I got punched in the back of the head. I immediately went to an urgent care. They told me it was a migraine. They gave me a couple of shots, sent me home, and didn't give me any other instructionsSo, you know, I went home and the shot kinda helped but the headache came back. I took more of my migraine meds. The headache started on a Tuesday and lasted four days. My last memory is that Friday of that week at about 1230 texting with my friends and then I don't remember anything.

The next morning, Saturday, I used to teach boxing classes. I didn't show up for work and everybody got worried. A few of my friends have keys to my home. So they came looking for me because they were worried. My boss at the boxing gym was like, “we can't find her,  nobody knows where she is. This isn’t like her.” They found me at my home on my couch and they said that I was just really dazed and that I looked confused. And so they had to call an ambulance to come get me and even in the ER. They didn't figure out that it was a stroke for quite a while. I had a bilateral stroke. So I didn't present with the typical symptoms. I didn't have one side of my body dropping, it was both sides. Like nothing worked on my body.‍

‍

Zeit Medical‍

How did they find that it was a stroke? What kind of stroke was it?‍

Valerie‍

I had a bilateral stroke in my thalamus, and they said I had injury to my basal ganglia‍

‍

Zeit Medical‍

How long were you in the hospital for?‍

Valerie‍

Almost three weeks.‍

‍

Zeit Medical‍

Tell me about your hospital experience.‍

Valerie‍

My hospital experience was pretty mixed. The ER (luckily I don't remember any of it) but from what my friends told me about it was pretty terrible.The staff immediately assume that I was just on drugs and that's why I was acting like that.They were really put out that I indicated somehow from what my friends told me that I needed to go to the bathroom. They were put out by having to help me to the bathroom and seem to think that I was just pretending that I couldn't walk. My friend said that they made a lot of comments indicating that they thought I was just on a lot of drugs. My friends were offended and upset by that too cause they were, like, no, she was supposed to coach boxing this morning. Like, something's really wrong with her. The staff kept making me sign things despite (not being with it.) The EMTs who brought me and they had clearly stated that I was a neuro case.

After I found out (what happened) I did complain to the hospital but they deleted the stuff they had me sign and they’re denying (that they made me sign it.) My mom witnessed this happening too. I'm a social worker myself, I used to be an EMT. So I'm kinda like, I know this isn't how you’re supposed to treat patients. When I woke up (in the ICU) because they had to put me in a coma to do brain surgery to remove some of the clots. They also had to do a catheter with a clot busting drug in it. The ICU was great. Those nurses were really wonderful.

The doctors there were really great. Everybody was really nice when I got moved over to the neuro unit. Everybody was really wonderful, really nice, really supportive over there. I spent about one to two weeks between those two units. The last week I was in a rehab hospital which was really great and really nice. My only point of contention with them is I feel like I got discharged a little too early and my after care wasn't really well coordinated.

The problem when you're younger and have a stroke is that there’s not a lot of resources for you. The expectation is that you have neuroplasticity and you're just gonna bounce right back and be fine. So I still can't drive right now. I just got cleared to return to work and it's really only because I own my own business and I work from home and so I can decide my own hours. I have to take a driving test apparently. None of this was really well explained to me or coordinated with me. The outpatient place I went to to continue my care when I was let go from the hospital was really great and wonderful but they sadly went out of business. The outpatient part was shut down so I had to be discharged from that at a certain point. My recovery has been pretty rocky.‍

‍

Zeit Medical‍

How long were you in the hospital for, from the first day in the ER to the last day of outpatient rehab?‍

Valerie‍

Including the outpatient rehab. It was from June 17th to September 27th.‍

‍

Zeit Medical‍

When you were in the hospital or in an inpatient rehab did you meet anybody there that you felt was helpful on your journey?‍

Valerie‍

The nurses, the occupational therapist and the physical therapist were super helpful. The speech therapist was really great and helpful too. The physical therapist I found particularly helpful. She told me she had suffered a traumatic brain injury at one point. She had fallen on her head and her sharing some of her lived experience and what she had gone through was really helpful to me.

Zeit Medical

What's been the most challenging aspect of your stroke recovery process?‍

Valerie‍

I think for me it's really just been like the lack of coordination and the lack of resources when you're  a younger person who has a stroke. The rehab hospital didn't really help me with setting up rides or transportation. They were like, you could take a lift or Uber and I was like, well you said, I can’t work, how am I supposed to pay for that? Because I'm a social worker and I still maintain a lot of professional connections. I was able to get help setting up paratransit from myself.

I just thinking about other people that don't have that kind of a professional background and those connections, that type of stuff is hard. I still have some deficits in my vision lingering that they think might go away but they're not sure about. I think that aspect of healing from the stroke is really hard. That first six months you don't know what's gonna be permanent and what's going to heal and disappear.

‍

Zeit Medical‍

Are there any other lasting physical or cognitive effects of the stroke that you're dealing with?‍

Valerie‍

I’ve noticed I do some word searching that I didn't used to do. Sometimes I have a really hard time coming up with the correct word to use. I'm a little bit slower in conversation. I'm a lot more sensitive to light and sound than I ever used to be. I was able to go to my friend's wedding reception last weekend. I noticed when there's loud music playing, I can’t focus anymore on what's going on in a group or what's happening when there's too much conversation or noise going around me.

I do have some other physical issues. My left leg works just fine. I can jog and run and do all kinds of things. I do notice I still have some ongoing issues with it feeling cold and having a burning sensation. Trying to stand up and just stand still in one spot for a long time is really hard. Especially if I'm trying to focus on doing something because of that sensation and it is really comfortable.‍

‍

Zeit Medical‍

So you mentioned you felt like there was a general lack of resources. Were there any resources or organizations, real-life or online that you found beneficial in your post stroke journey?‍

Valerie‍

I found the online Facebook group was really helpful to connect with like finding other young stroke survivors. It feels isolating. In the city I live (in), I wasn't really finding many. I was told there are all these resources for people who have a stroke that are young there really weren't any, I didn't find any support groups or anything. I also found that actress Emilia Clark who was on Game of Thrones had two brain aneurysms while she was filming that show. She runs an organization called Same You. What it's about is the lack of coordination of care and resources for people who are young and develop brain injuries, whether acquired or traumatic. I found her website really helpful and reading everybody's survivor stories was really helpful and useful. I've just been googling and finding information like that. It's been helpful.‍

‍

Zeit Medical‍

How has your perspective on life changed since experiencing a stroke?‍

Valerie‍

I don't feel the same sense of urgency with doing things. I think I used to try to be a very go go go and fill every minute and second of the day all the time. I think I slowed down a lot, in good ways.‍

‍

Zeit Medical‍

How can friends and family best support you, somebody who's had a stroke, who's in that recovery process? What’s something the people who are close to you can do to be helpful?‍

Valerie‍

I think visiting and being present with the person and having no expectations is really helpful. For the person who had a stroke it's really hard. You're yourself, but you're not. You're in familiar territory but it suddenly feels very unfamiliar. I think the more you have close friends around you who just kind of accept where you're at and are just okay with being there, don't have an expectation for you to do or be anything. Even if they're just sitting and watching movies, and not necessarily always asking if they can do something or help you with something. In a lot of ways when you have a stroke sometimes, you're just kinda like, I don't even know what I need right now.‍

‍

Zeit Medical‍

Are there any specific accomplishments or achievements in your recovery that you're proud of?‍

Valerie‍

I was able to start lifting weights again and jogging again. That's been pretty big for me. I started my own private practice for therapy and I just started working again last week. So I'm seeing therapy clients again. That's been huge as well.‍

‍

Zeit Medical‍

What are your hopes and aspirations for the future?‍

Valerie‍

My hope is that once I'm able to come off the blood thinners, and I'm able to go back to coaching boxing and even training and boxing in whatever capacity I'm able to.

You know I'm not looking to jam pack my days by any means like I was before, but I do genuinely love boxing and the boxing community. So I'm really hoping to be able to get back to that. I'm looking forward to getting back with some of my former patients from before I had the stroke. I have also opened up my personal practice to working more with people that have traumatic and acquired brain injuries. Especially having gone through one now myself, and knowing a lot about the process and supporting people through that. That's really what I'm looking forward to. I really like supporting people and getting back into some of my old activities.‍

‍

Zeit Medical‍

What would you want other people to know about being young and having a stroke? Like you’ve mentioned, there’s a dearth of resources and information for younger stroke victims.‍

Valerie‍

What I would really want people to know and I think what bothers me especially when I look at information that there is out there for younger people with the stroke is that I feel like a lot of information really focuses on weight, diet, exercise, activity. It almost feels like it's very blaming of the individual. I don't like that aspect of it. A lot of the time, when you're young and have a stroke there's usually something else going on in your body. Like for me, I was put on birth control that I shouldn't have been put on because I have a long history of migraines with aura. That was what caused my stroke. I want to let people know it wasn't your fault. It’s probably something that you couldn't control, no matter what information is out there. More than likely wasn't your fault. You didn't bring this on yourself. I think that's a really important thing for younger people who have had a stroke to hear.‍

‍

Zeit Medical‍

That's really true. You can do everything right and you can still have a stroke.

Valerie

I was a vegetarian who was boxing more than twelve hours a week. I was moving and doing stuff right and I still had a stroke.

‍

Zeit Medical

Is there anything else you'd like to, anything else you'd like to share?‍

Valerie‍

I really hope in the future we start to build better resources for younger people who have had a stroke. I think if I had access to financial support and rides that would have been great. I was really fortunate that my family was able to help and support me. But there's a lot of people out there that don't have that. Like disability payments weren't something that was accessible to me. That's a real problem because I went four and a half months with no income. It's a huge life-changing event. We need a safety net too.

Like I said my perspective is different just because I'm younger and had a stroke. I had a bilateral stroke, so it presented differently. I'm also an ER crisis social worker. I think it's not that the public isn't well trained. I think even our medical professionals aren't well trained on this. I got treated like I came in on a drug overdose and was just treated miserably and it delayed my stroke discovery. It was hours before a CT scan was finally done and they found all the clots in my brain. I think that acronyms are really good to help people learn what to look for, like BEFAST is a good thing, but  that's not always how people are gonna present. I think it's really important that people who are in the medical field have to expand their thinking.

Zeit Medical

Valerie, thank you so much for your time. I do agree with you that more light needs to be shown on strokes and younger people and I think this a small step in the right direction.‍

Valerie‍

Thank you so much for giving me the opportunity to do this, I appreciate it.

Thank you Valerie for sharing your story. Find out what Zeit Medical is doing for stroke survivors and those at risk for stroke at zeitmedical.com