Marquis Stroke Group - What stroke survivors want you to know
The Marquis Stroke Group, a support group of survivors and loved ones in Newberg, Oregon, has compiled a list of things they wished those around them understood based on discussions the group had. These are the words of stroke survivors who hope they can be helpful in aiding families impact by stroke in understanding the non-physical impacts of stroke.
Lots of information exists about the physical challenges of people who have had strokes.
But less attention has been given to the feelings and preferences of stroke survivors.
This is a guide for friends, visitors, caregivers and anyone who interacts with stroke survivors to increase understanding and facilitate care.s a stroke survivor, here is what I ask of visitors:
- Thanks for visiting. It is helpful if you speak directly to me, not just to others who might be in the room.
- It is not necessary to raise your voice unless asked to do so. Please speak as if I understand, even if I don’t respond.
- I can find it difficult to ask for help – please offer concrete examples of what you can do (e.g. mow the lawn, pick up groceries, make phone calls, write a list, etc.).
- I am often tired, so it’s best if you don’t stay too long.
- I hope you won’t be offended if I seem blunt or unappreciative. Strokes can block typical social filters.
- My memory might be impaired, so you might have to remind me of dates or times.
- When I’m tired, I might slur my words, appear unbalanced or confused and get frustrated more easily.
- Everything takes more time, especially activities like bathing and dressing.
- Staying positive and genuinely hopeful is important to me.
Facts about stroke:
- Recovery has no limit – change is always possible and there are no times by which things should occur.
- Stroke affects people in different ways, so don’t assume what happened to someone you know is the same experience of the individual you are visiting.
- The effects of stroke can occur “on the inside” although they might not appear to have caused an obvious physical change. Wide physical changes are common, however, ranging from loss of speech and mobility to only slight impairment.
- People who have had strokes can experience wide emotional swings from feelings of intense anger to sadness, tearfulness and frustration. They might struggle with depression.
- Sound sleep can be difficult but is vital for the brain to heal so naps are needed.
- Memory loss from strokes is not the same as age-related memory loss.
- Loss of speech, hearing or mobility can feel very isolating so interaction with others is needed but can be exhausting.
- Loud noises and bright lights can be difficult to tolerate.
Stroke survivor comments
- “From my perspective, the ongoing positive support of family and friends is key to a positive recovery.” – Scott
- “I want my family and friends to understand the information in this post so they can more effectively assist with my recovery.” – Charlie
- “I’ve been in denial, gone through much depression and refused to accept what was obvious. The grief I’ve experienced for the last 18 months is as devastating as any grief could be. At this point, I’m trying to let go of the life I had and contemplate what a new dream could possibly look like.” – Susan
Stroke does not define us. Stroke does not discriminate. We are artists, scientists, engineers, truffle experts, sales associates, security guards, siblings, spouses and friends.