stroke recovery

World Stroke Day

World stroke day takes place on October 29th. Its aim is to help highlight the impact of stroke. This website might be of interest to a few of you http://www.worldstrokecampaign.org/2011/Pages/Home.aspx

It even shocked me that 1 in 6 people worldwide will have a stroke in their life time and that every 6 seconds someone (regardless of AGE or gender) will die of a stroke. It breaks my heart and reminds me still that I am one of the lucky ones. 

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This is why we started Stroke Nation.

Beside You

“You’re going to be okay,” Harry whispered, pressing a kiss to the side of your head. You made some inaudible mumbles before turning your back to him, your throat tight and uncomfortable. “You heard the doctor, you have every chance of making a full recovery.” He stroked your hair, trying to sooth you the best he could.

You were going in for surgery the next morning and you were absolutely terrified. You’d been a healthy kid growing up and had only been at the hospital when your siblings were sick. Hospitals scared you and being unconscious while people were cutting into you was unimaginable. You’d woken up just a little bit earlier that night, screaming from a nightmare, and woken Harry up with you.

“It’s going to be alright.” His arms wrapped around you, pulling you in tight to his chest. 

“I’m scared, Harry,” You mumbled, turning in his arms to bury your face into his chest. He held you tighter, placing soft, gentle kisses to your hair. That’s how you fell asleep that night, and you slept comfortably until morning.

In the morning, you dressed in soft sweatpants and a worn shirt and sat at the kitchen island, drinking water and watching Harry eat his normal breakfast of cereal with banana.

“You’ll be there when I wake up?” You asked on the car ride to the hospital. Harry was driving with one hand on the wheel and the other tight in between both of yours.

“You know I’ll be right beside you.” You worried the entire way to the pre-op room. The nurses let Harry stay with you up until you went into operation, so Harry was sitting next to you and squeezing your hand gently as the inserted the IV in your arm and the anesthesiologist started you off. You drifted slowly, the anesthesia kicking in and Harry standing next to you just smiling.

“Stop being so tall,” you grumbled, swatting at his leg. He stared at you for a second before getting down his knees and resting his chin on the edge of your bed.

“Better?” He asked. You glared at him for a minute, your vision blurring a little.

“Weirdo.” That was the last thing you said to him before you went under. You had no memory for the next six hours. But when you woke up, Harry was next to you, sitting in one of the uncomfortable hospital chairs you normally occupied, dozing lightly.

“Hey,” you croaked, your voice barely audible.

“You’re awake!” Harry jumped, grinning that stupid wide smile.

“You’re still too tall,” you teased, stretching out your muscles slowly and apprehensively. They were stiff and full of kinks so you went as timidly as possible, just trying to make sure everything was in order.

“I talked to the doctor about shrinking surgery, but apparently the technology isn’t quite here yet.” He seemed genuinely apologetic which had you laughing. Once you started, it was difficult to stop and Harry began laughing at your laughter. When you two both finally calmed down, he moved up onto the hospital bed to lay next to you.

“How are you feeling?” He asked, running his fingers up and down your arm in a soothing motion.

“Not sure…” You rested your head on his big wide shoulder and sighed. “You stayed here the entire time?”

“I stayed right where I belonged.” He turned to press a kiss to your forehead softly. “Beside you.”  

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Our First Video Volunteer, Carl

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Welcome to Able Place!

For those of you that dont already know, this is my sister.

She had a stroke in March 2011 and now cant speak.

But that doesnt put her down, she smiles for a reason. love and family kept her happy <3

and we have ALOT of love for her :)

im so thankful i have her. yea i cant hear her voice ever again, but i have her love with me :)

i miss her voice. shes my only sister. she is my best friend.

and the guy next to her, is her husband “/

p.s. a year ago she was pushing almost 400 pounds…. she is 200 now :)

and still dropping pounds <3 :)

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For 26 years, I never cut my hair. I’d always been envied for it, how long it was, how fast it grew. I was never praised for how pretty I was in other aspects of my appearance and I can’t tell you how many times I’ve been told, “You’d be so pretty if…” followed by statements like ‘you lost weight’, ‘you were a little lighter, ‘you wore makeup more often’. I never cut my hair because it was the one part of me I was consistently told was beautiful, pretty, gorgeous, etc. And if I’m truly honest with myself, it’s one of the few things I thought was beautiful about myself. I decided to stop getting relaxers and other chemical treatments to change my hair at 25 and also moved toward more natural products but I couldn’t bring myself to cut it. I started to embrace my hair as it returned to its natural state, how curly it was and how fun it felt to shake it around. Then, 17 months ago, I had a stroke and many scary things accompanied that experience and though it may seem a superficial part, the loss of my hair was terrifying. In Little Women, when Jo cuts her hair, Amy exclaims “Oh Jo, your one beauty.” That’s how I felt. This part of me I held up, I believed was beautiful was gone and it would take so much time to get back. I’ve tried my best, despite the continuous struggle to love myself and the fear of things like selfies, to document my hair growth and I’m glad I did because you can see my joy returning in these photos as I learned to walk, take care of myself, and love the me that came out of that experience. My goal is to continue to let my hair grow and maybe one day it will be as long as it was before but I’m learning that as much as this piece of me is part of my identity, it’s not everything and the loss of what I felt was my “one beauty” taught me that there is so much more that contributes to how beautiful I am.  

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Robots!!!!!

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Someone on different strokes recommended people start filming the techniques the use for daily tasks, so heres my technique for getting in and out of the bath, hope it helps someone develop their own technique. PLEASE DO NOT PUT YOUR SAFETY OR HEALTH AT RISK BY TRYING TO COPY THIS, I believe you will know your abilities and it took me months of practising before I could do this with water, so practice first fully clothed, with any supports/shoes you need on and someone close by to help if you need it and when you feel confident, lose the shoes/support, then eventually when you master that try it without anyone in the room, and you will know when you are ready to take a bath. good luck! 

REMEMBER I AM NOT A PHYSIO, JUST A STROKE SURVIVOR SHARING MY EXPERIENCE & TECHNIQUES 

One of our first dates in Summer 2008.

Happy Valentine’s Day!

I started this blog to keep everyone aware of how Christian is progressing after his stroke, which happened in the early morning of February 1, 2011.  This was of course totally unexpected, as the most serious of his problems to date were allergies and ocassional sinus infections.  Nothing that was a precursor to stroke.  I made it a point to watch his health, because I love him so much.  His heart was fit, he had no high blood pressure, arterial sclerosis, diabetes, pre-diabetes symptoms, high cholesterol or high levels of triglycerides in his blood. He had been fighting a touch of bronchitis for a little over a week and spent the weekend in bed before he unexpectedly had to have some dental work done on January 31, 2011. In the early morning of February 1, a little after 1:20 a.m., he groaned in his sleep.  I shook him a little, letting him know that it was only a nightmare.  He quieted down a little, then he fell out of bed.  I got up of course to see if he was ok.  He was silent.  I told him to wake up! Snap out of it.  He was face down.  I went to pick him up, but thought better of it, in case he broke his arm.  I told him to try to get up.  He manged to get to sitting position, but he was dazed. He wouldn’t speak. I called 911 and he was at the nearest hospital ER in 20 minutes.  I realized he had had a stroke, but I wasn’t in a panic yet.  I figured it must be a small one and in any case, it would do neither of us any good to panic. The ER doctor coulsn’t give him the life-saving stroke medicine, because it was uncertain when he had actually had the stroke. Since we had gone to bed at 10:30 p.m., that was the last time they considered him conscious.

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Let your voice be heard. Let’s do more for stroke recovery

Living with Aphasia

I am very tired. I love my husband, but living with an aphasic is difficult. Usually I understand what he is saying. We can communicate like lovebirds do, when they first realize they cannot live without one another. Sometimes all he does is look up and I will say something like “ I know you do, but I am not watching that show again. I have to go back to work,” and then he will nod in agreement or smile at me. It is rather odd. Some people who are unhappy have corresponded with him repeatedly, only to tell me that he was mocking them, or was being dismissive. Aphasia can reflect so much about the fluent speaker. If I perceive that the world is against me, I will find all the reasons why it is. If I perceive that there is harmony and a bright future, my environment will always feed that thought pattern. This is what I have noticed. After my husband had his stroke, everyone tells me what a strong woman I am for caring for him, for doing everything I can to heal him. I am flattered by this, I know my friends (and some strangers) mean well. They tell me they could never do the same. I don’t claim to know them better than they know themselves, but this kind of comment always bewilders me. So what? You would put the love of your life in adult day care (or divorce them) so you could have “a life,” have cocktails with your friends after work, and go out on the weekends? Is that what you mean? I don’t get it. 

My husband is getting better, but I do get tired. And I do miss someone looking out for me. I miss having long conversations with my husband. I miss time for myself. I know it is temporary, but sometimes it seems like forever. I know it is not that bad, I know it could be worse, I know I have a lot to be grateful for. I know, I know, I know. 

I think this trip to China is going to change both our lives for the better. Change it in positive ways I have yet to foresee.

Adjusting

As I’ve mentioned before, my lovely wife @soulstolespeaks and I moved recently and I’ve been adjusting slowly to life in a new state located in a region I had never previously been. 

It’s a process meeting new people and deciding when/if I tell them about my stroke (only person I’ve told is our new minister). It’s also interesting because I don’t think too much about it beyond the occasional pain and my lack of balance.  

That is until something stressful and/or complicated happens and it’s all I can think about. Something like going to the Department of Motor Vehicles and changing driving licenses and car insurance. I did my best to prepare, looked up everything I needed and went with all the right things and then there was no clipboard for me to write on and the space at the counter was tiny. The staff was helpful and no one laughed as I dropped a ton of things but my nerves were on high and my left hand shook (as it often does when I’m nervous), not cooperating the way I needed it to. These are the times when I worry about going back to work, if my coordination will ever improve, and how long it will take till I don’t freak out at things like this. 

My world is different in so many ways and it’s hard not to get angry about that. It’s hard to push through and focus on things. It’s hard to struggle with worry about my ability to handle stress and what too much could mean for my health. 

We stopped by the post office to send a package afterward which was a much better experience. I’m still thinking it today and though I know I’m capable of so much, experiences like this one are hard and I’m reminded that I’m still adjusting. 

MY GRANDPA WROTE THIS HIMSELF!!!

I am so so proud of him. A few years ago my grandpa had a massive stroke and has had, if I remember correctly, a few smaller ones and a number of seizures ever since. He struggles to walk, go to the bathroom or bathe on his own, his speech has been very slurred and he gets really confused at times. There was even a point that he forgot that he and my grandma were divorced. :’( He had to relive that all over again from his hospital bed.

(She’s been with him helping to take care of him and stuff since her second divorce but he still had to go through all of the emotions with finding out that she was no longer his wife, hadn’t been for many many years and had, in fact, already been married to and divorced from another man.)

He’s always been such a strong man and hard-worker. He had his own construction company and traveled all over the country building mansions and restaurants. After his stroke he wasn’t able to do that anymore. It was hard seeing him going from being so independent and busy to being so weak and seeming so vulnerable. He lost his physical independence but not his stubbornness and it gets him into a bit of trouble. He’s convinced that one day he’ll be able to go get his driver’s license again and even go back to work at construction sites. I’m glad he has goals and I hope that some of them may even come true for him one day. Who am I to say he can’t do these things? My only hope is that, as hard-headed as he is, he notices and treasures the SMALL steps he’s making too. This little card attached to my Christmas gift from him this year, this is PROGRESS! My sister got hers first and I heard her ask dad if our grandpa wrote it himself and he said yes. I was confused at first but when I got my bag and saw the tag I got all teared up. We both did. We get so excited every time we look at these little tags. It’s really one of the best Christmas gifts we’ve ever had! More than we ever could have asked for from him! He wrote our names, guys! He wrote MY name! He wrote this himself!!! Gah… I can’t even describe to y'all how good it feels to see that! I just hope he sees his progress for what it is and keeps pushing forward. <3