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Male

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!

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

Bryan | 30 | CA

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

How old were you when you had your stroke? 30

  • Date of your stroke?  11/9/2015
  • What general area do you live in?  San Diego, CA
  • Type of Stroke? Carotid Artery Dissection
  • What were your symptoms? What were you feeling during your stroke? I had a small stroke and a much larger stroke the next day. Symptoms of the first one were inability to speak and inability to move my right side. I was in the hospital for the second stroke. I collapsed and was completely unresponsive.
  • 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? I didn’t do in patient rehab.
  • Where did you go for outpatient rehab? Sharp Memorial Hospital Outpatient Rehabilitation, San Diego, CA. I live in San Diego and my stroke team is from UCSD. I was in the Stroke Center when I had my big stroke. They were fantastic and there is no question that I would not be where I am now if not for their skill and expertise.

What keeps you motivated now?Football. Before my stroke, I was a semi pro football player. I lost a lot of strength after my stroke. I knew I wanted to play football again. I first started playing catch with a tennis ball with my dad. Then I started running around cones to try to get my coordination back. I added weights, running, swimming. A few weeks ago, my neurosurgeon took me off blood thinners and gave me his blessing to go back to football. I am the starting punter for the San Diego Thunder. Our first game is in 3 weeks. I’m pretty anxious about how I will do, but football had kept me going and it’s something I need to prove to myself.

What are your biggest challenges/residual effects?

Aphasia. My mom is writing this for me. Reading, writing and speaking are still difficult, but I am slowly getting better. My right hand is still numb and I have difficulty with fine motor skills, like clipping my nails. Everything is harder when I am tired.

What is something you have learned that might encourage others?

I have learned to enjoy life and never take it for granted.

I have learned to enjoy life and never take it for granted.

Bryan

What is something quirky/fun about yourself?

I have a orange tabby named Frankie. She has been a big part of my recovery.

How did you hear about NOPW?

Instagram #youngstrokesurvivor (@nopw_)

Justin | 27 | CA

By | Stroke Story, Male, 20's | One Comment

How old were you when you had your stroke? 27

  • Date of your stroke? 09/30/2015 
  • What general area do you live in?  Riverside, California
  • Type of Stroke? Unsure
  • Any known reasons for your stroke? The reason for my stroke was a blood clot due to heart failure that I did not know I was experiencing at the time.
  • Were you administered TPA (Tissue Plasminogen Activator) within the first 3-5 hours of your stroke? No.
  • Where did you go for inpatient rehab? Kaiser Permanente in Los Angeles.
  • What are your biggest challenges/residual effects?Thankfully I do not have any huge residual effects. I have noticed however, that the strength in my left hand is not the same that is in my right hand.

What were your symptoms? What were you feeling during your stroke? Tell us the story of what happened.

Before my stroke I remember driving home on the freeway with intense stomach pains and an extremely painful headache located at the center of the top of my head. The headache eventually went away, but I had severe stomach cramping all night on the side of my stomach. I eventually was able to relieve myself, and when I finally did, I could not lift myself off the toilet because my legs did not work. I had to crawl to my bed from my bathroom. Because I did not know that I experienced a stroke, foolishly I took a nap to see if I would eventually get feeling back in my legs. Upon waking up, I found that I did, but then realized my thumbs did not properly work when I was typing during texting.

That was my first stroke. A few days later, I experienced my second stroke. This one was much more scary, and this is when I first went to the hospital after I had it. I was in my room and all of a sudden my body stiffened and I collapsed on my bed (thankfully) stomach first. My legs began to move uncontrollably, and I was in a state of confusion. I immediately called my brother with slurred speech because I just knew something was wrong. At that time I felt and sounded drunk to put it best. Instead of calling my mother, I decided to text her because speaking was very difficult for me. Texting was difficult because I had the words in my head, but I could not form them in sentences when I began to text. At this time both of my arms were completely numb. I remember digging my nails deep into both of my arms and scratching really hard, and still I had no feeling.

That night I went to the hospital with my left hand moving around uncontrollably in circles, and I vomited a green colored liquid. My legs were weak, and I had to be pushed around in a wheelchair. It was a very scary moment in my life.

My last stroke was thankfully while I was in the hospital. I remember taking a nap and waking up to my complete left side of my body numb. I had slurred speech, and the left side of my face drooped. I was also blind for a moment, and it took me a week to get feeling back in my legs so that I could walk again, This was the first time during my strokes that I actually cried and felt really unsure about my future, and if I was ready to live with a disability, or possibly die.

What is something quirky/fun about yourself?

Although others do not agree, I generally think of myself as a really boring person (lol). Before my strokes, I have always wanted to model, and I finally got the opportunity to do professional modeling with big named companies and brands. It has been a cool experience, and it is something that I hope to continue in the future. I also like to paint, and do crafts.

What keeps you motivated now? 

Living a healthy lifestyle keeps me motivated now. First, I worked out at the gym for the outer appearance. now I work out and eat healthy to help prevent another stroke. Family and faith is also a huge motivator for me as well.

Remain determined. Do not get discouraged!

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

Share your story! Doing something like this, or even talking to someone that you are just now getting to know can help you or someone else so much. Recently I have met two new friends my age that have experienced strokes themselves. Our community unfortunately is not as small as one may think. I have developed lifelong connections with these two individuals, and I am thankful to know that I am not alone.

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

Please don’t let anxiety get the best of you. I was already an anxious person before all of this, but now every time I experience my hand or foot going to sleep, I immediately freak out and pray that I am not having another stroke.

How did you hear about NOPW?

Some years ago I remembered hearing a story about Malcolm in The Middle star Frankie Muniz having a stroke at a very young age, so I googled it, and came across the NOPW website through the comments on the article.

Follow Justin on instagram HERE!

What’s your favorite motivational song?

My favorite motivation song is “Through the Rain” by Mariah Carey. I listened to that song every night in the hospital, and it really helped me through the process. When visiting hours were over, I got extremely lonely, and that song stayed on repeatedly.

Matt | 28 | CA

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

How old were you when you had your stroke? 28

  • Date of your stroke? 12/02/2008
  • What general area do you live in? Sacramento, CA
  • Type of Stroke? Accidental
  • Any known reasons for your stroke? During my second brain surgery for a tumor (epidermoid-very uncommon about 1.5% of all brain tumors) the surgeon accidentally cut a blood vessel.
  • Where did you go for in-patient rehab? Vallejo Kaiser Rehab Facility, California
  • Where did you go for out-patient rehab? South Sacramento Kaiser, California

W hat are your biggest challenges/residual effects?

I’m still struggling with left sided hemiparesis. I cannot run (unless I have to and it’s ugly). Hard for me to button my right sleeve on a dress shirt.

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

Knowing that God lives. Support from my wife, family and friends. Help and encouragement from therapists (physical, occupational, speech)

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

W hat keeps you going now?

Being able to look back and remind myself of how far I have come. After the stroke I was on a feeding tube for two weeks, in a wheel chair for 4 months, etc… I get encouraged every time I do something new that I have not done before. I feed off friends and family when they tell me how inspirational I am in their lives.

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

Never tell yourself your not going to be able to do something. The doctors will tell you that most of your recovery will be in the first two years, for me I see major improvements 5 years later.

What is something quirky/fun about yourself?

I am an avid bike rider.