10 Things Stroke Survivors Want You to Know

Nurses, doctors, and therapists were really good at treating me physically after I had a stroke. However, once rehabilitation was over, it was up to me, the stroke survivor, my friends and family to come up with a new day-to-day dynamic. No one had this new script readily available — it was something we had to figure out as we went. I quickly learned open communication between the survivor and caregiver was key, and the more open the better. I have several stroke survivor friends and I asked them: if you were given the chance, what would you tell people about life after stroke? So here it is, the top 10 things survivors want you to know.

1. My brain is not the same as it was before the stroke.

Stroke affects people physically and mentally. Many stroke survivors look “normal” but are dealing with several inward struggles, such as aphasia, pseudobulbar affect and depression). Both the survivor and the caregiver can feel a loss — personalities often change and it feels like the person who was there before the stroke is gone forever. My son often refers to me as the “Old Mommy” and “New Mommy.” He had a hard time understanding that the “Old Mommy” was gone and the “New Mommy” was here to stay. Acceptance of the new person who has risen from the ashes can be a long and winding road, but acceptance of the new life needs to be reached by the survivor and caregiver before full healing can begin. When it comes right down to it, I’m still me, just different.

2. The stroke doesn’t define me.

“That’s the sisters who had strokes” or “Those are the parents whose two daughters had a stroke.” These were two phrases I often heard after my sister and I had strokes in 2011 and 2012. People didn’t know our names, but associated us with the word stroke. My sister’s name is Karen, I am Delanie, and yes we both happened to have strokes. However, that is not our whole essence.

3. I‘m disabled, not “stupid.”

People with strokes are not slower by any means, and just because it takes someone a longer time to come up with words or explain themselves, that doesn’t mean there is a deficit. We just do things differently. Right after I had a stroke, I couldn’t talk. But I heard and understood everything. I may have looked like I wasn’t understanding, but I definitely was. Even now, I get easily frustrated or confused, but it just means I’m now someone who has to take my time.

4. Please encourage me to move.

It is very easy to come home after rehab and just want to stop. There are no therapists telling you what to do and people making decisions for you, which is a relief at first. But it’s so easy to fall into a slump. For the first year, I sat on the couch and watched TV while 100 pounds quickly added up. I was definitely more sedentary than I used to be, but I was depressed and had no drive. My husband was the one to encourage me to get off my butt and get moving. It’s OK to have rest days or to stop when tired, but don’t ever give up on anyone. Keep prodding!

5. My fatigue is real.

Many stroke survivors sleep a lot. And I mean a lot. I’m eight years out and still need a nap most days. Sleep helps us function and without it, you’ll see us trip, slur our words and be in bad moods. If we’re physically or emotionally drained, let us rest. When we say we’ve had enough for the day, we’re done. We know our bodies and what we can handle.

6. My emotions may be all over the place.

Depression, anxiety and pseudobulbar affect are just some of the emotional issues I faced. I would be happy one minute and literally crying the next. My family could never keep up with what mood I was in. Know that I don’t choose to be this way. This is an effect of the stroke and how my brain chooses to behave. I’m handling it the best I can and would change it if I could.

7. I may move slowly, but eventually, I’ll reach my destination.

I’ve often referred to stroke recovery as being reborn. I had to relearn to walk, talk, swallow — all things that were innate and luckily I learned again, but I stood shakily on my two legs, said Mama, and drooled in the beginning. Many of us survivors use wheelchairs, walkers and canes. I push the grocery cart slower than others and hear the lady huffing behind me because I don’t walk fast enough. Just as one would have to be patient with a child, be patient with me. I’m trying.

8. Not all strokes are the same.

Ischemic vs. hemorrhagic. Brain stem vs. cerebellum. Young adult vs. senior. Strokes, like people, are different. Where it took place in the brain, the age of the person, how fast they got to the hospital — these are all factors in how strokes can affect someone. My sister and I both had strokes. She lost the use of her left arm while I was left with mostly emotional issues. So please don’t assume all people who have strokes are the same.

9. Strokes affect survivors and the people we‘re close to.

Life after stroke is new for everyone involved. Stroke survivors and caregivers need to be patient with each other and themselves. There are books out there on this topic, but until you actually are in the situation, it is hard to understand. Both sides will have bad days. Just get up tomorrow and do it all over again.

10. We’ll probably be recovering for the rest of our lives.

Many stroke survivors make a full recovery and regain everything the stroke took from them. Some start to make small advances after years of recovery. There are those that are locked in for the rest of their lives. Stroke survivors are resilient and as long as there are advancements to be had, we will work hard to make them.

I’m sure there is more, but these were the ones most mentioned. Stroke survivors and caregivers need to try not to compare one person’s recovery to another’s. We’re all going to get where we need to be when we need to get there.