What I Learned about Stroke Survivorship

I woke up and felt weird 7 years ago today. I had a terrible headache among other things. I didn’t know it, but I was having a stroke. Instead of getting up, I decided to go back to sleep. Despite the pain of that headache, I did fall asleep. That was definitely the wrong thing to do. When I woke up, my right side was paralyzed.

The next couple of years were tough. I has so much pain down my right side. Learning how to walk again was a nightmare. First I learned to move the leg, then the arm, then my hand. I remember the day I snapped my fingers (barely) on the right hand side. I felt ecstatic because the hand actually moved! It took a year-and-a half working with a physical therapist before it looked like I could walk normally again. I couldn’t really, though. I still had pain going down my right side.


Aphasia

I had aphasia, too. That is a communication disorder. Although I couldn’t speak fluently, I had all my faculties. That is one of the hardest parts of aphasia. People think that you are slow. IQ isn’t diminished by the stroke. I tried my best to get over it.


The National Aphasia Association website says that if you are not over your aphasia by the first three months, you will probably have it for life. That’s a terrible thing for someone with aphasia to accept. I swore I would find a way around it.


You have to understand. I could hear what people around me said, and what I wanted to say swirled around in my head. When I could utter a few words, they weren’t the ones I had though of . . . those words were stuck inside. Instead, I had to think of different words that I could say that were close enough. Sometimes I could say them, sometimes I couldn’t. It was like having two people in my head trying to get a single thought out. It was maddening!

Doctors Who Did Something Different


Two year after my stroke, I learned of a doctor who did something called laser therapy. I went in to see him. The doctor said that it had been so long since my stroke had happened, he didn’t know if laser therapy would work. If I wanted to try it, I would know in the first few sessions. I didn’t know if anything would happen, but it was worth a try. After the first session, I could talk a bit better. Yay!

The laser therapy continued to make me better until I got to about 40-50% of my communication back. Then it stopped. I still had aphasia.

The search continued to find something that would take me all the way. Did I know if something existed? No. That didn’t stop me from trying.

Three-and-a-half years after my stroke, a different doctor suggested I try micro current neuroefeedback. I didn’t know what he was talking about, so I went home and looked it up on the website. The site told me something amazing. Did you know that 85% of Traumatic Brain Injury survivors who had neurofeedback got better. When I read that statistic, I wanted neurofeedback badly. Where do I sign up?

The doctor was pleased that I wanted to try micro current neurofeedback. I had 16 sessions and nowadays nobody meeting me knows that I had a stroke or aphasia. I feel humbled. I am so grateful for the people who came up with micro current neurofeedback and the doctors who give it as an option to their patients. Patients like me are grateful for what these people accomplish every day. It seems like a miracle.

Workaholic


The other interesting thing about my stroke is the way I think about things in general. I used to be a workaholic. My husband got my attention after my work was done. In other words, I wasn’t there for him that much. I am sorry for that now.


The way I view the world now is family, friends, community (including strangers) and, finally, work.

For Stroke Survivors


For stroke survivors, I have one thing to say. Never. Give. Up EVER. You can get better as long as you think you can. That is what neuroplasticity is all about. I exercised every single day. Not because I liked it. “I hurt so bad, would it kill me to miss a day?” I thought. The answer is yes. If you miss a day, you are likely to miss another, and then another. So I got up and struggled through the agony that came with the exercise.

Neuroplasticity builds over time, wearing a groove deeper and deeper every time you engage in a movement or thought pattern. You don’t like the way you are moving or thinking? You can change it over time.

For Caregivers


I also have a piece of advice for caregivers. Take care of yourselves first. Eat right. Exercise. Get enough sleep. Take some time for yourselves. The stroke survivor that you take care of relies on you. Stroke is a long haul issue. If you burn out, then who do your stroke survivors depend upon?


My last piece of advice is this: Stroke is the largest contributor to disability in the United States. Ok, it’s really around the world. Be kind the your stroke survivor, even when it is rough. The stroke survivor gets cues when they are coming back from their stroke. They are influenced by the five people around them the most.

I am Grateful


I am kind because my husband was kind. My sister, her husband, and my friends were compassionate, too. With all of their love, I was able to rebuild my life to be a gentle, caring person. If they had been different, I would be in a completely different place myself.

I wish the best for you caretakers and stroke survivors as you continue your journeys.

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marcia@StrokeForward.com

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