My number one thing is that doctors and therapists have NO CLUE on how to get you 100% recovered. So tell your family and friends that. It is not for lack of effort.
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.
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