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13 Things Every Stroke Survivor Wished You Knew

happy senior couple of stroke survivors

Only a stroke survivor can truly relate to another stroke survivor. But that doesn’t mean that everyone else needs to feel like an outsider.

The more you understand about stroke recovery, the more you can help your loved one recover. So if you’re a caregiver, it’s important to educate yourself about stroke recovery as much as possible.

You want to make sure you know all the best rehabilitation methods to help your loved one recover. And you also want to make sure you’re using positive language.

What to Say to a Stroke Survivor

If you’re wondering what to say to a stroke survivor, start with that very word: survivor.

It’s often frowned upon to use the term ‘stroke victim.’ It’s much better to use the word ‘stroke survivor’ or even ‘stroke warrior’ – because that’s what they are!

To help you understand how to speak and interact with your loved one, we’re taking the lead from Jill Bolte Taylor – a stroke survivor and neuroanatomist.

She has one of the most-watched TED Talks of all time, as she tells the life-changing story of her stroke from the perspective of being a neuroanatomist.

You can watch her TED talk here:

What Every Stroke Survivor Wished You Knew

In Jill Bolte Taylor’s book, My Stroke of Insight (which is one of our top stroke recovery books), she shared tips on how to talk and relate to someone that had a stroke.

Here’s some of the best advice:

1. I am not stupid, I am wounded. Please respect me.

Stroke does not affect someone’s intelligence.

A stroke is a “brain attack” that deprives different areas of the brain of oxygen-rich blood. The damage left behind can impair different skills, like language and speaking.

This does not mean the person has lost intelligence. Rather, it means they might need more time to find the right words.

Do not shout. Do not yell. They can likely hear you just fine. Just be patient.

In fact…

2. Be as patient with me the twentieth time you teach me something as you were the first.

Stroke recovery means relearning everything for the first time again. Many stroke survivors feel like they’re a child again, learning everything as if for the first time.

You would not grow impatient with a child if you were teaching them how to ride a bike for the first time, so don’t grow impatient with your loved one either.

3. Protect my energy. No talk radio, TV, or nervous visitors.

During stroke recovery, the brain needs stimulation in order to heal itself. But it needs specific stimulation – and not too much!

For example, the stimulation of doing hand exercises is good. It helps the brain rewire itself and improve hand function.

But the stimulation of background noise only drains on the limited energy that a healing brain has.

This is one of the reasons why mindfulness is important during stroke recovery.

Limit as many unnecessary distractions as you can.

4. Make eye contact with me. I am in here – come find me. Encourage me.

If someone avoided eye contact with you, it would be upsetting, annoying, and hurtful, right? Everyone feels that way, including stroke survivors.

In this light, you don’t need to worry about what to say to a stroke survivor. Instead, focus on how you say it: with eye contact.

5. Do not assess my cognitive ability by how fast I can think.

After stroke, the brain is busy rewiring itself through neuroplasticity. During this process, the healthy areas of the brain begin to pick up the slack for the damaged areas – and this take time.

In the meantime, the brain is scrambling to heal itself and it may take a survivor longer than normal to retrieve information. This does not mean they have lost their intelligence.

They are simply having trouble pulling up the information.

6. Repeat yourself – assume I know nothing and start from the beginning, over and over.

As the brain heals from injury, it sucks up a lot of mental juice.

So when a survivor has a hard time understanding you, don’t repeat just the last part. Putting the pieces together is an extra and unnecessary step.

Instead, repeat everything and please be patient while you do it.

7. Stimulate my brain when I have energy, but know that small amounts may wear me out quickly.

It’s perfectly normal to crave lots of sleep after stroke.

Survivors may find themselves craving a nap immediately after rehab exercises or even right after getting ready in the morning.

Tasks that once felt effortless may require a tremendous amount of effort now. Remember, the healing brain sucks up a lot of juice!

Stimulation is good (like with stroke rehabilitation exercises at home), and lots of sleep afterwards is necessary for recovery.

8. Please don’t raise your voice. I’m not deaf, I’m wounded.

When a stroke survivor asks you to repeat yourself, they just want you to repeat yourself.

They do NOT want you to repeat yourself louder, unless they ask.

Because saying something louder is not going to help them process it better.

Things like patience, compassion, and slowing down are much more effective ways of boosting communication.

9. My desire to sleep has everything to do with my healing brain; and it has nothing to do with laziness.

Stroke causes damage to the brain that must be healed. Just like a broken leg requires time and energy to heal, so does the brain.

When a stroke survivor desires sleep instead of doing something “productive,” it’s not because they’re being lazy. It’s because their brain is healing and requires rest to recover.

10. Please have patience with my memory.

Stroke can affect a survivor’s short-term and/or long-term memory. It can also affect cognition.

If a loved one doesn’t remember something that you told them a month/day/hour ago, please don’t take it personally. Be kind and patient with their recovery.

11. When I’m “stuck” try not to take over.

During stroke recovery, a little coaching or suggesting can be helpful for a survivor. Taking over and doing something is NOT helpful.

Constantly doing everything for a survivor would put them at risk of a phenomenon called learned-nonuse.

Essentially, functions that you stop using will eventually become completely lost as the brain lets go of unnecessary functions (i.e. functions it thinks are unnecessary because you’re not using them).

Movement is key to recovery, so avoid taking over. Instead, help your loved one accomplish tasks with good form and safety.

12. I’m not being ’emotional.’ I’m recovering.

Try to be compassionate if your loved one exudes emotional changes.

Sometimes stroke can affect the emotion center of the brain and affect a survivor’s ability to manage their emotions. It’s a condition called emotional lability.

Also, a stroke pushes sudden life changes onto a survivor. Meaningful activities like hobbies and jobs might be lost. This is enough to push anyone into depression.

Put yourself in the shoes of a stroke survivor. If everything suddenly changed, and you had no control over it, wouldn’t you feel emotion too?

13. I need you to love me, both for who I have been, and for who I might become.

During stroke recovery, the goal is usually to get back to “normal.” However, for many stroke survivors, there is a “new normal” created.

There are many emotional, behavioral, and even personality changes that can occur after stroke. Sometimes, the changes go away. But other times, they’re here to stay.

It’s important to find acceptance for the here and now. Caregivers should support their loved ones in finding this acceptance.

You can help by cherishing your loved one for who they are now, instead of what was in the past.

If you want more ways to help a loved one that suffered a stroke, check out the book Healing & Happiness After Stroke. You might also benefit from the ebook below!

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See how Susan is recovering from post-stroke paralysis

“I had a stroke five years ago causing paralysis on my left side which remains today.

I recently began using FitMi.

At first it was difficult for me to be successful with a few of the exercises but the more I use it, the better my scores become.

I have recently had some movement in my left arm that I did not have before.

I don’t know if I can directly relate this to the use of the FitMi but I am not having occupational therapy so I conclude that it must be benefiting me.

The therapy modality motivates me to use it daily and challenges me to compete against my earlier scores.

I heartily recommend it!-Susan, stroke survivor

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