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How to Talk to Stroke Survivors and What To Do: My Experience

Although there are approximately 800,000 strokes per year, stroke survivors are an enigma. People talk about and understand other medical issues so much better, like knee replacements or various surgeries or ailments.


Strokes are unique in that they vary in intensity and type, and the speed of recovery varies from person to person, if there is the opportunity for recovery. Many times, people remember their grandparents having strokes, which either killed them or they were permanently disabled, with no hope for recovery. This was possibly due to their age, lack of rehab understanding by healthcare professionals, lack of updated research, etc.


Therefore, people tend to think the worst when a loved one experiences a stroke. However, research and rehab principles have come a long way; yet, as my OT Mark Ritter has said, “We still have a long way to go to fully understand stroke recovery, but new discoveries are occurring everyday.”

All that being said, the effects, causes, and prognosis of strokes are confusing for survivors, their loved ones, doctors and therapists. Due to this confusion and unfamiliarity, knowing what to do or say can be problematic for everyone. For instance, it took me a couple of years to understand how to ask for help from friends and my caregiver, Jane.


Now, please allow me to share a few thoughts about my experiences over the past four years.


TALKING

This is a sensitive, and sometimes uncomfortable, subject for survivors, friends and loved ones alike. Strangers are a completely different story.

Some comments that have been helpful for me from loved ones are:

  • Would you like some help?

  • How can I help you?

  • You’ve really improved on…

  • Good job!

  • You’re inspiring!

  • Where would be most comfortable for you to sit?

  • Would you like an ottoman?

  • Can I make you a plate of food/drink?

  • You’re looking well!

In summary, if you’re not sure what to say, don’t say anything. Just be kind and thoughtful. Think, "How would I want to be treated if I’d had a stroke?" Empathy goes a long way!


Unhelpful Comments (When saying nothing is better than saying anything.)

  • What happened to your hand/arm/leg?!

  • I didn’t know strokes happened to skinny people!

  • Why is it a problem to be unable to use your hand?

  • When will you get the use back in your hand?

  • Staring

There are behaviors which can help or hurt survivors. For example:


Helpful

  • Opening a door for a disabled.

  • Offering a pillow for the affected arm/hand.

  • Give us a smile. Everyone loves smiles!

  • Notice our improvements when you notice them.. “Hey, you’re sure walking better since the last time I saw you!” Personally, I cannot see my progress!

  • Giving us a hand when we’re stepping onto a curb.

  • Pulling out/pushing in our chair, when we’re getting seated.

  • Don’t be afraid to offer us assistance. We’ll tell you if we don’t need it, but we’ll thank you for offering! :-)

  • Try and think about what you would want/need if you were disabled. It never hurts to try to understand how another person feels.

  • Ask us out to a movie or lunch sometime; or, just ask if we’d “like some company.”. We need diversions, and if we’re busy, we’ll tell you.

  • Ask us if you could help us with running errands, which is very difficult for us, even if we’re driving because: once we get into the store, getting to the article we need in these huge stores is quite a challenge - and - then need some help with things off the shelves, since many of us have one usable hand.

  • We have a difficult, if not impossible, time pushing those large, heavy carts (which usually have wheels that are cluttered with debris!) through the store.

  • Yes, there are those electric carts, but I try not to use them, as I need the exercise and the challenge; plus, I feel there are others who need them more than I do. My girlfriend, Cheryl, always asks me this, which I love! And, it gives us time for a long visit!

  • Take care of your bodies and minds so you don’t end up having a neurological event. If you do take care of yourself, you’ll be much better able to handle any setbacks you may encounter in the future.

Unhelpful

  • Staring strangers. More common than you’d think.

  • Non-disabled women and young girls using the handicap stall(s). In public restrooms, when other stalls are available. I’m generally easy-going and positive about most things, this is a big pet-peeve for me, which I’ll discuss in detail in an upcoming post related to the ADA Law. Why does it irritate me? Because those of us who are handicapped need the larger space for wheelchairs, and/or we need the grab bars to steady ourselves or assist us with sitting. True, unlike the signage (and penalty warning) on parking spaces, there isn’t a handicap logo on the door stalls of most women’s stalls (why, I don’t know!), but once you get into the stall, it should be obvious. Obviously, it isn’t.

  • Slamming the door you’re trying to go through.

  • People looking down at their cellphones, running into you.

  • People rushing behind you, causing you to fall.

  • Non-disabled drivers parking in handicap spaces.

  • Non-disabled drivers with a handicap tag jumping out of their car (sometimes a sports car), and walking perfectly into the store. One of my doctors told me when he sees this, he confronts the person and says something like, “Wow! You’ve certainly recovered from your disability!” as he stands there stunned!

  • Displaying pity. Please don’t pity me.

In summary, until I experienced this disability, I didn’t realize:

The importance of the Americans with Disabilities Act of 1990 (ADA).* Its provisions are such a gift for us! It can be sad to say… The general population of Americans without disabilities do not seem to realize there even is a law.


How Can I Help?

  • Care about your fellow man/woman - even strangers.

  • To teach young girls to obey the ADA Law (and be courteous) by leaving the handicap stalls for the disabled - when there are other stalls are available.

  • To be compassionate to others less fortunate.

  • To apologize when you, as a non-disabled woman/girl, leave the handicap stall and see a disabled person standing there waiting (or sitting in her wheelchair).

  • To open a door for a disabled person.


And the list goes on…

Certainly, there are exceptions, but they are few and far between, but very appreciated!


Trust me, during these 4 years as a disabled person, I’ve seen a side of humanity that is not so pretty - clueless, uncaring, and distracted by their needs. And I will tell you, when the handicap restroom stalls are occupied, there’s a non-disabled woman, girl, or mother and child emerging from the handicap stall 99% of the time, clueless as to what they’ve done. Finally, and then I’m done - to complicate the issue, women’s handicap stalls house an infant changing table; so we must also compete with mothers changing the diapers of their infants!


In conclusion, my opinion is - based on my reading of current events and my experiences during my 70 years on this earth - the majority of Americans are thoughtful, caring people. What concerns me is the hateful speech that’s in the public domain that goes unchecked. It’s become mainstream, instead of outrageous. Added to that is our preoccupation with texting vs talking/conversing - even when we’re at a meal together; focusing on our smartphones vs the people and environment around us; and, the handling of conflict, or even small requests with defensiveness, or rage.


To find out more about the Americans with Disabilities Act of 1990, click here to visit the Definitions page. Brielle Carter wrote in a few weeks ago and also talks about helping those of you in the AZ area, click here to visit the site she recommends.


Do you have any tips on how to talk to survivors?

Let me know in a comment below!

As always, thank you so much for reading. Have a wonderful day.

Maureen

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