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Stroke Story

Andrew | 5 | WI

By | Under 12, Stroke Story, Male | No Comments

How old were you when you had your stroke?  Andrew was 5 when he had a major stroke that required brain surgery. He also had 4 smaller strokes (all occurring between July 2010 and July 2011).

  • Date of your stroke?  11/26/2010
  • What general area do you live in?   Cedarburg, Wisconsin
  • Type of Stroke? Right frontal hemorrhagic
  • Any known reasons for your stroke?  We traveled the country to many different doctors to find the cause of Andrew’s strokes. He had his genome sequenced twice. In, 2014, The National Institutes of Health (NIH), finally diagnosed him with a new, rare deficiency…DADA2. He’s lacking the ADA2 enzyme. When he was diagnosed 3 years ago, he was one of 5 patients in the U.S. Now, with more screening and knowledge of the disease, there are more than 80 patients in the world. NIH is working on a cure. As of now, to keep his inflammation down, he gets weekly shots of Enbrel.
  • What were your symptoms? As a toddler, Andrew had many viruses and infections. After the MMR vaccination, he became more sickly. When he was 3, he had a high fever for 6 weeks. He was admitted, with no main cause, other than his body’s inflammation markers were extremely elevated. They put him on prednisone, but it only worked for a short time. His first stroke happened when we were walking down the hallway at the hospital, going to one of his appointments. He kept falling into me and told me he was seeing double. His second stroke, a few months later, was a screaming headache. His 3rd stroke (a week after the 2nd), he had a fever of 105. Because his strokes were both clots and bleeds, his doctors didn’t know what to do, so they put him on aspirin and plavix (2 blood thinners). Three days later, in November of 2010, he came in from outside screaming and he couldn’t walk. His whole left side was paralyzed. He had a massive stroke, caused by the 2 blood thinners. He was such a fighter and pulled through, a true miracle. He spent a month in the hospital and continues to do physical therapy. His 5th stroke, in July of 2011, he woke up and his eyes were looking in different directions.Andrew has the best sense of humor and loves life! He is in 5th grade and loves school, but struggles with most subjects. He walks with a limp and wears a brace on his left foot. He gets botox often, to keep the muscles loose in his leg and foot.

    Because of the damage caused by the large stroke, Andrew has constant seizure activity. He’s had two epilepsy surgeries that didn’t work. We were told his next best option would be a hemispherectomy –where they disconnect the right half of his brain from the left. We are obviously scared to put him through another surgery, so we’re in the process of getting other opinions. We’ve tried most meds and medicinal marijuana, but he continues to have seizures.

  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? No
  • Where did you go for inpatient rehab?  Children’s Hospital of Wisconsin
  • Where did you go for outpatient rehab?  Ozaukee Therapy in Mequon, WI
  • What are your biggest challenges/residual effects?  Andrew has drop foot on the left side, so he wears a brace. Because of the weakness, his left leg is now about a half inch shorter than the right.

What advice would you give someone recovering from a stroke now?

Read stories and talk to other survivors. I (Andrew’s mom), love reading how people are doing. It’s comforting and helps Andrew to feel less alone.

What keeps you motivated now?

Family!!

Read stories and talk to other survivors. It's comforting and helps Andrew to feel less alone.

What is something quirky/fun about yourself?

Andrew loves texting and snapchat! He isn’t afraid of anything—nothing, not even doctors!! He loves all sports and cartoons.

What’s your favorite motivation song? 

Anything Guns n Roses!

Any therapy tips you picked up during your time in therapy that might help others? 

It’s always hard to motivate Andrew to go to therapy. He loves missing school to go, but gets burnt out. Lots of bribing…

How did you hear about NOPW?

Can’t remember…I think instagram 

Follow Andrews Mom on instagram HERE!

Monica | 29 | PA

By | Stroke Story, 20's, Female | No Comments

How old were you when you had your stroke? 29

  • Date of your stroke? 07/03/2016
  • What general area do you live in?  Waynesboro, Pennsylvania
  • Type of Stroke? Ischemic Stroke
  • Any known reasons for your stroke? No, not yet!
  • What were your symptoms? I was at work and began to feel very distant and disoriented, It took me fifteen minutes to tie an apron around my waist which so lasted realized after being educated was probably because of weakness in my arm.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? Yes
  • Where did you go for inpatient rehab? Wellspan Surgery and rehabilitation hospital
  • Where did you go for outpatient rehab? Wellspan Adams Health Center
  • What are your biggest challenges/residual effects? I’ve lost mobility in my left side, I’ve begun to see improvements in my leg my but my arm is still very much paralyzed. I no longer have any inflection in my voice.

What advice would you give someone recovering from a stroke now?

Recovery is a marathon not a sprint! Our body’s have been through something very traumatic. It will be a slow recovery but it’s doable.

What keeps you motivated now?

My family and the hope of having the life I’ve always planned for myself! I won’t let this stroke stop my life at 29.

Celebrate the tiny improvements they make up the big gains!

Post recovery, what is something you have learned that might encourage others? 

Celebrate the tiny improvements they make up the big gains!

What is something quirky/fun about yourself?

I’m a quirky/fun person in general! I went to culinary school. Cooking is my passion and my favorite hobby!

Any therapy tips you picked up during your time in therapy that might help others? 

Just keep pushing, if you keep your mindset strong the body will follow.

How did you hear about NOPW?

From Instagram! 

Follow Monica on instagram HERE!

Lainee | 30 | UT

By | Stroke Story, Female, 30's | One Comment

How old were you when you had your stroke? 30

  • Date of your stroke? 03/11/2017 
  • What general area do you live in?  St. George, Utah
  • Type of Stroke? Ischemic Stroke
  • Any known reasons for your stroke? Caused by a condition called Primary Hyperaldosteronism or Conns Syndrome.
  • What were your symptoms? We were getting ready for bed and mid sentence I couldn’t speak. My husband was confused until he noticed my arm wasn’t moving. He pinched it and it was completely numb. My left face was dropping and my blood pressure had spiked to 215/151.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? No.
  • Where did you go for inpatient rehab? My insurance denied in-patient rehab stating they didn’t see any reason.
  • Where did you go for outpatient rehab? Dixie Regional Neuro Therapy
  • What are your biggest challenges/residual effects?I’ve spent a month learning completely how to walk again. I’m left handed and the stroke happened on my left side, so I’ve had to learn to use my right side more.

What keeps you motivated now?

Life! I can’t wait to hit the trails again and explore this world. I want to experience everything with my family and that’s why I fight to walk and gain use of my hand!

What advice would you give someone recovering from a stroke now?

You know, I really struggled with acceptance. I thought I would wake up better each kind of like th flu… but that’s not how the brain works. I had to accept this new life and really let myself feel all the emotions. It’s a rollercoaster of feeling so strong, to feeling so helpless. Support is everything, let people in and just fight for every single step!

Patience.... be so very patient! These things take time.

Post recovery, what is something you have learned that might encourage others? 

Patience…. be so very patient! These things take time.

What is something quirky/fun about yourself?

I love jump-roping!

Any therapy tips you picked up during your time in therapy that might help others? 

The more you do at home the more progress you will make. Focus on making each movement count and that it’s correct. Fight like hell to make that connection.

How did you hear about NOPW?

From Instagram! Thank you for letting me know about this community!

Follow Lainee on instagram HERE!

Meggan | 33 | CA

By | Stroke Story, Female, 30's | No Comments

How old were you when you had your stroke? 33

  • Date of your stroke? 12/07/2016
  • What general area do you live in?  Sherman oaks, California
  • Type of Stroke? TIA 12/7/16 & Embolic stroke on 3/16/17
  • Any known reasons for your stroke? Chiropractic manipulation- Vertebral artery dissection causing a TIA. Embolic stroke during surgery (angiogram/ cerebral embolization)
  • What were your symptoms? I started having severe neck pain in the middle of the day Sunday that got progressively worse each day. On Wednesday I bent over & when I stood up I had double vision. My co-worker walked in & her face looked like it was melting. I lost my peripheral vision, was slurring words & although my brain was fully aware I couldn’t properly express myself. I also had electrical shocks down my left arm & hands.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? Don’t know what that is.
  • Where did you go for outpatient rehab? UCLA
  • What are your biggest challenges/residual effects? Headaches, dizziness, loss of dexterity, unable to work right now (I’m a dental hygienist), anxiety that it will happen again.

What keeps you going now?

My family, my two dogs. Hearing that I’ve been so strong through this (I don’t always feel that way inside but it motivates me to hear this). Also, that maybe I could help bring awareness to strokes… I’ve heard from two other people that they were diagnosed with a “migraine” and sent home and then had a massive stroke.

What advice would you give someone recovering from a stroke now?

You can never ask too many questions, find a good support system (message or call me!), take time to heal & take naps. Make yourself your first priority- people will understand.

You can never ask too many questions, find a good support system (message or call me!), take time to heal & take naps. Make yourself your first priority- people will understand.

Post recovery, what is something you have learned that might encourage others? 

Be your own advocate. When I was in the hospital the first time, with the symptoms, the doctors said I was having a migraine. It just didn’t feel right. I could’ve been released but I opted to stay overnight in order to get a MRI in the hospital. I’m so glad I did! Doctors said had I gone home, I probably would’ve had a massive stroke.

What is something quirky/fun about yourself?

I’m obsessed with my two dogs & I love pigs! My dream is to own an animal sanctuary with rescued pigs, cows, turkeys, goats, etc. I love crossfit & paddle boarding (although I can’t exercise just yet, I hope to get back at it soon)!

How did you hear about NOPW?

I was searching key words such as stroke, Tia, vertebral artery dissection.

Follow Meggan on instagram HERE!

What is your motivation song? 

Chase | 24 | TN

By | Stroke Story, Male, 20's | No Comments

How old were you when you had your stroke? 24

  • Date of your stroke? 7/11/2016
  • What general area do you live in? Murfreesboro, TN
  • Type of Stroke? Ischemic
  • Any known reasons for your stroke? No known reason too be found. I had blood clots for some reason and doctors said I had 2 heart attacks and was never aware of it. I was very active and loved too workout was a personal trainer.
  • What were your symptoms? Calf pain. Dizziness/nausea.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? No
  • Where did you go for in-patient rehab?  Southern Hills Medical Facility.
  • Where did you go for out-patient rehab?  Phi Beta Phi at Vanderbilt.

What is something you have learned that might encourage others?

Just have to take it one day at a time.

What are your biggest challenges/residual effects?

 Left side weakness. Mostly left arm and hand. Cannot open hand very well but can grip though.

What advice would you give someone recovering from a stroke now?

Don’t give up we are still alive for a reason.

Don’t give up we are still alive for a reason.

What is something quirky/fun about yourself?

I am very sarcastic and animated.

What keeps you going now?

 The desire too get back better then I was before the stroke.

How did you hear about NOPW?

Instagram Follow me HERE.

What’s your favorite motivational song?

Walking Like Giants by stars go dim

Toni | 23 | AL

By | Stroke Story, 20's, Female | No Comments

How old were you when you had your stroke? 23

  • Date of your stroke? 6/12/2016
  • What general area do you live in? Huntsville, AL
  • Type of Stroke? Left Carotid artery dissection
  • Any known reasons for your stroke? They have no idea why I had my stroke.
  • What were your symptoms? A couple months before my stroke I had experienced mild vertigo, loss of taste and smell, and weakness to my right side. During my stroke my right side went completely paralyzed, I couldn’t speak while I was paralyzed. When I was able to move again I was able to speak but I made no sense. I knew instantly that I was having a stroke when I put my left hand over my face and smiled. Only the left side was smiling. During my stroke and even on the way to the hospital I was very calm.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? I don’t know what that is.
  • Where did you go for in-patient rehab? I was at the Huntsville hospital.

W hat are your biggest challenges/residual effects? My entire right side is in sensory shock. Basically just constant pain. I can’t really feel heat or cold much. I’m in constant outlook to keep my head safe from harm. If I get hit in the head, neck, or fall I have to immediately get to the hospital to get checked.

W hat is something you have learned that might encourage others? I have learned that if you have been given a second chance. Take it and run with it. I lived by one percent, and I’m going to make that one percent worth it.

You can make it through this. You are not alone.

What is something quirky/fun about yourself?

I know a lot of weird and random facts! Example: Babies are born without knee caps.

How did you hear about NOPW?

Instagram! Follow me HERE.

What keeps you going now?

Getting my degree. Living my life to the fullest and achieving all of my goals.

What advice would you give someone recovering from a stroke now?

You can make it through this. You are not alone. Just remember to take it one step at a time. And never be afraid to ask for help.

What’s your favorite motivation song?

Destiny’s Child – Survivor

Rachael | 28 | IN

By | Stroke Story, 20's, Female | No Comments

How old were you when you had your stroke? 28 & 33

  • Date of your stroke? 7/26/10 & 5/30/16
  • What general area do you live in?  South Whitley, IN
  • Type of Stroke? Ischemic both times
  • Any known reasons for your stroke? Moya Moya disease complicated by use of Yaz in 2010 and then by sepsis in 2016.
  • What were your symptoms? Right sided weakness, facial droop, & slurred speech
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? Yes
  • Where did you go for in-patient rehab? Rehab hospital in Fort Wayne
  • Where did you go for outpatient rehab? KCH

What are your biggest challenges/residual effects? Some days just getting out of bed is hard,  but I had to stay at it for my hubby and wonderful kiddos.

What keeps you going now?

Wonderful hubby Chad, amazing kiddos, Wyatt & Maggie, and all my family and friends.

What advice would you give someone recovering from a stroke now?

Control what you can, but don’t live in fear. Don’t let it stop you from living.

Control what you can, but don't live in fear. Don't let it stop you from living.

What is something you have learned that might encourage others? One day at a time… sometimes a minute at a time,  is all you can worry about. Don’t sweat the small stuff either

What is something quirky/fun about yourself?

I’m a nurse, almost 13 years, all in ICU and ER… so glad to be back to work as of this week 🙂

How did you hear about NOPW?

Friend’s wife had a stroke and shared her story on here.

What is your motivation song? 

Theresa | 41 | TX

By | Stroke Story, Female, <45 | No Comments

How old were you when you had your stroke? 41

  • Date of your stroke? 4/24/2016
  • What general area do you live in? Blue Ridge, TX
  • Type of Stroke? Hemorrhagic
  • Any known reasons for your stroke? None. Now they think I have a clotting disorder.
  • What were your symptoms? My vision disappeared. My left hand went numb, and my face got droopy. My son and sister said my words were very slurred.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? I don’t know what that is
  • Where did you go for in-patient rehab? Reba McEntire Rehabilitation Unit
  • Where did you go for outpatient rehab? Texoma Medical Center

What are your biggest challenges/residual effects? Vision changes. I still have a lot of cognitive problems. Learning to use my left hand again is very difficult. I have difficulty focusing on more than one task at a time. I have a problem with my bowel habits. I can walk pretty well, and use a cane for balance. I do have left foot drop.  I struggle with looking okay for the most part, with a lot of damage to my thought processes, handwriting, calculating. I don’t show emotion anymore.

What was something that kept you going during your stay in the hospital that might encourage others?

Never give up. When you have done all you can, you can still push a little more! Be positive.

What keeps you going now?

My family, my students, and work. I love teaching.

Never give up. When you have done all you can, you can still push a little more! Be positive.

  • What advice would you give someone recovering from a stroke now? Keep your head up. Literally and figuratively.
  • What is something quirky/fun about yourself? I always wear crazy socks!  I always have candy on me. I am love the Dallas Cowboys Cheerleaders.
  • How did you hear about NOPW? Instagram (@nopw_)

Rachel | 29 | MI

By | Stroke Story, 20's, Female | No Comments

How old were you when you had your stroke? 29

  • Date of your stroke? 3/22/2016
  • What general area do you live in? Berrien Springs , MI
  • Type of Stroke? Cerebellar infarction, due to a dissection of the vertebral artery, which caused an ischemic stroke.
  • Any known reasons for your stroke? The day before, I tried to do a one-armed handstand balancing on a kettle bell. I fell and hit my face against the kettle bell, hyper-extending my neck and dissecting the vertebral artery (inner layers of artery stuck together, inhibiting blood flow).
  • What were your symptoms? I had no symptoms for about 24 hours. The next morning after working out, my neck began to hurt really bad. About 4 hours later, I got extreme vertigo, quickly followed by nausea and vomiting. Within an hour of the onset of those symptoms, I lost control and feeling on my entire left side, that’s when we knew it wasn’t food poisoning or the flu, but something more serious. At that point, I couldn’t stand or walk, so my husband and a coworker carried me to the car, and we drove to the ER.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? Yes
  • Where did you go for in-patient rehab?
    After leaving the ER at Lakeland Hospital in St Joseph, MI, they transferred me to their ICU (because of the TPA), and I was there for about 24 hours. During that time, I saw a speech therapist (but my speech was unaffected, so that didn’t help much), an occupational therapist, and a physical therapist, all of which worked there in the hospital. Then I spent a night in a “regular” hospital room to recover. The next morning I saw the physical and occupational therapists again. I was discharged that day (two days after my stroke).
  • Where did/do you go for outpatient rehab?
    I live and work on at Andrews University, and we have an excellent Physical Therapy program. I was able to do rehab for free with a neurological PT that teaches in the program, since I was willing to let students work with me for a class they were taking. I did that for about 3 months, and it definitely made a huge difference. I also have a close friend who is a PT, who would come over and work with me and give me different exercises to practice on my own.

W hat are your biggest challenges/residual effects? My vision, balance and coordination were the biggest areas affected. Getting around was the first big challenge. About a week or so after getting home, the headaches got really bad. I was able to get stronger pain killers and after about a month, the headaches went away completely, which was awesome! For a long time, my vision was a problem. Things wouldn’t stay very steady (visually) when I would move around, but that eventually stopped. I still see double in a certain area on of my left eye, but my vision in general is still improving. Sometimes I feel visually “overwhelmed” when I’m moving around or in a crowd of people. I also got occasional vertigo from things like sit ups, lying flat on the floor or tipping my head backwards, but that has basically gone away now. Now the most consistent reminders of my stroke are the tingling in my left fingers, dryness in my left eye, and that my left eye doesn’t open as wide as the other one. But these are such minor things and I feel so blessed because of that!

A ny therapy tips you picked up during your time in therapy that might help others? All of the physical therapy I got was amazing, but I only did that a couple of days a week, so it was really what I did on my own time that made the biggest difference. Besides just practicing the things I learned in therapy, I reincorporated CrossFit, Zumba and yoga into my schedule as I was able. CrossFit helped me get my strength back, but also helped me get back some of the coordination I’d lost. Zumba was also excellent for coordination and agility, since there are a lot of movements you do when dancing that you wouldn’t do in your every day life. And yoga was great for my balance and flexibility, since I was often very stiff and tight from not moving as much. Now I’m back to CrossFitting 5 days a week and doing Zumba and yoga at least once or twice a week. Also, I noticed during my PT sessions that some movements or positions might be really difficult, or even induce vertigo, but if I did them again, they would become easier, more comfortable or the vertigo would stop. I started challenging myself little by little to test out those uncomfortable positions (like leaning backwards for example, or doing sit ups). Now they’re no problem!

How did you hear about NOPW?

I found you on Instagram! I’m so glad there’s a community of people that not only know what I’m going through, but are working to raise awareness. Follow me HERE.

What is something quirky/fun about yourself?

I help at my local church, I’m a CrossFit coach (CFL1), I love to cook and eat, and I have two rescue dogs.

I want to be even stronger and better than I was before the stroke, not just physically, but mentally, spiritually, and as a person in general. I want to show people that road blocks are temporary, and excuses are a huge waste of time. I just want to be awesome.

P ost recovery, what is something you have learned that might encourage others?The human body and the brain are so amazing! I don’t feel like my body let me down when I had a stroke, I feel like it’s showed me how incredibly God made me and reminded me to take the best care of my body that I can. I was very fit before the stroke, and that has REALLY helped with my recovery. Other stroke survivors that I’ve met are amazed at how far I’ve come. Even two months after my stroke, many people couldn’t tell I’d had one. I was passionate about fitness and health before, but now I tell people that fitness can literally save your life (not just lengthen it). And as long as you’re alive, it’s never too late to start a fitness journey! I also take every opportunity I can to teach people about strokes and make sure they know how to recognize the signs and symptoms. I knew NOTHING about strokes before I had one. Hopefully the information I share can help someone else. But most importantly, my whole experience was just a huge reminder of how good God is. He brought so much positivity and joy to my life out of it. I think that’s the biggest miracle of all.

What keeps you motivated now?

I want to be even stronger and better than I was before the stroke, not just physically, but mentally, spiritually, and as a person in general. I want to show people that road blocks are temporary, and excuses are a huge waste of time. I just want to be awesome.

What advice would you give someone recovering from a stroke now?

Listen. Listen to your body, listen to the doctors, and listen to the people closest to you, too. They may not all agree, so you’ll have to synthesize all the input you’re getting and just make the best choices you can. But don’t let anyone stop you from working hard. I’ve heard a lot of amazing stories about doctors saying a stroke patient would never do “something” again, and even though it might take months or years, they do it! Just work hard. You’ll have tough days, but remember they’re just that: days. They’ll pass and you’ll get a new one tomorrow.

T ell us about your tattoo on your wrist! 2016 was a big year for me: had a stroke, finished grad school, turned 30 and now I’m starting my dream job in a couple of weeks. I feel like I’m capable of just about anything right now, and I wanted a visual reminder of that for when I forget 🙂 I was so excited to find you guys after my stroke. I think what you’re doing is so important, and I LOVE explaining what the symbol means.

While this stroke has strengthened my spirit, it’s also softened my heart. God has really used this experience to make me a more sympathetic and thoughtful person, and this heart pop is also an homage to that.

What’s your favorite motivation song?

I heard the song “Alive” by Sia a couple weeks after my stroke, and that meant a lot to me for obvious reasons! Also, “This Too Shall Pass” by OK Go.

Kathy | 45 | OH

By | Stroke Story, Female, <45 | No Comments

How old were you when you had your stroke? 45

  • Date of your stroke? 3/01/2016
  • What general area do you live in? Dublin, OH
  • Type of Stroke? Veinous Thrombosis
  • Any known reasons for your stroke? None.
  • What were your symptoms? Severe headache for over 2 weeks. Then I lost my vision.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? No.
  • Where did you go for in-patient rehab? Ohio State Medical Center
  • Where did you go for outpatient rehab? Texoma Medical Center

What are your biggest challenges/residual effects? Concentration. Some cognitive deficiency.

What was something that kept you going during your stay in the hospital that might encourage others?

Keep going. Don’t stop trying.

What keeps you going now?

My children.

Keep going. Don't stop trying.

  • What advice would you give someone recovering from a stroke now? You are not alone. Don’t compare yourself to others that are recovering.
  • What is something quirky/fun about yourself? While recovering all I wanted to listen to was bad movies. Grease 2 was the top of the list.
  • How did you hear about NOPW? Facebook (@nopw_)