Updated: Jun 9, 2020
Post-stroke. One of the most irregular diagnoses. Movement, cognition, communication, and memory all look different for each person who has experienced a stroke. But for those of you who have had a stroke and are reading this, one outcome is the same: you survived. So how is it that I am writing a blog on how to keep living after a stroke?
I think we all know. Survival does not equal living. Survival doesn’t mean you retained the abilities to dress yourself, comb your own hair, or even feed yourself. Survival doesn’t mean you can walk, remember, or even speak the way you used to. Survival doesn’t mean you can continue to participate in the very things that brought you meaning and purpose in life. Survival does not mean you can immediately continue living as you defined living before having a stroke.
Not much different from the progression of life, stroke recovery is a process. Humans, by nature, strive to be better tomorrow than they are today. Recovery from a stroke should not be thought of as a step backward or as a period of pause until ‘completed.’ Rather, each day presents an opportunity to live better, with more meaning and more purpose than the day before.
Don’t wait to ‘get better’ to start
The infamous promise. As soon as I can move my right arm again, I will cook for my family. As soon as I can walk again, I will fish my favorite spot at the lake. As soon as I can speak well again, I will attend my weekly bridge game.
The starting line in these scenarios is typically moving. If you wanted to wait until you could move your right arm, you will wait until you can pick up a glass of water. If you wanted to wait until you could walk, you will wait until you can walk 2 miles. If you wanted to wait until you speak well, you will wait until you can hold a 20-minute conversation.
Don’t delay living while you recover. Recover while you live.
Sure. You may not be able to do all of the things you did pre-stroke as you did them before. BUT:
· You may be able to do some of the activities you did as you did them.
· You may be able to modify other activities so you can participate in them a little differently than before.
· You are likely to find new activities, which you never thought to have the opportunity to explore until your circumstances changed.
The scientific, physiological fact of the matter is: our brains recover from a neurological insult such as a stroke with repetition of specific and functional tasks. This means, if you want to be able to cook again, your brain and body will relearn as you do the actual task of cooking. If you want to be able to fish again, your brain and body will relearn as you do the actual task of fishing. If you want to be able to communicate better with friends and family, you should start by speaking.
Shameless plug: occupational therapists are specifically trained to help their clients relearn, modify, and identify meaningful activities. Seek out their expertise.
1. List the activities that brought you meaning and purpose prior to your stroke.
work or home management tasks
leisure or hobbies (crafting, fishing, visiting with friends/family)
serving others through volunteer work or religious-related activities
2. List the activities you would like to participate in now—6 months—a year from now.
This may include the very basics of self care (dressing, bathing, toileting, brushing your teeth, combing your hair.)
This may include any of the activities you listed in step 1.
This may include any new activities that peak your interest
3. Brainstorm ways to modify activities from step 2 to fit within your current abilities.
learn one-handed cooking techniques
find a wheelchair accessible fishing-hole
seek out a card-game partner who is understanding of your current abilities and able to assist as needed
4. If needed, seek professional guidance of an occupational therapist, a physical therapist, a speech therapist, or a recreational therapist.
5. Choose one activity from step 2 that you can do today.
Give yourself the grace to participate in the recovery process while simultaneously finding meaning and purpose in each day. Recover while you live.
Get out of your pajamas
Has anyone else been really excited for a day off with a plan to spend the whole day in your pajamas, but then at about 3 o'clock in the afternoon you want nothing more to shower and put on some blue jeans?
In my experience, pajamas have been one of the things that have plagued my clients who have had a stroke. Understandably so. For many of them, they spent weeks or even months in a hospital setting where it was necessary to wear pajamas or a hospital gown. Imagine having your work-life stripped from you, losing the ability to leave home independently, or suddenly requiring the need of a walker or a wheelchair in a home that isn’t so accessible. Changing out of your pajamas doesn’t seem so pressing when think you have no reason to dress for the day. Additionally, should you experience hemiplegia with the loss of function of one or both limbs on one side of your body, getting dressed is Really. Stinking. Hard.
I get it. I get the pajama phenomenon. But, because I can’t ignore the benefits of dressing each morning, I preach to my clients the importance of making it a habit.
Getting dressed signals your brain the start of a new day. The act of putting on your clothes in the morning forces you to ‘start moving,’ and remember, one of the keys of recovering while you live is to start today.
Getting dressed signals your brain the day’s purpose. When I put on my scrubs in the morning, my brain begins thinking on work-related tasks. When I put on my blue jeans, I begin to think on the housework or family related tasks I will be doing that day. When I don my ‘church-clothes’ I prepare for the day of worship.
Getting dressed signals your brain a fresh start. Just as the flip of a new calendar year, the removal of our pajamas can allow us to let go of yesterday’s frustrations and prepare for today’s triumphs. Each day brings a new beginning and the opportunity to live better.
1. Whether you need assistance or can dress independently. Whether the task takes 5 minutes or 30 minutes. Whether you put on yoga pants or white slacks and a floral blouse. Make a commitment to get out of your pajamas.
Prioritize your energies
Prioritization is a skill needed for all people—post-stroke or not. However, particularly with neurological-related diagnoses, prioritization becomes ultra-important as the brain cycles through the natural work and rest phases of recovery.
Rest is an essential part of recovery, and you are likely to require more rest after experiencing stroke. You should keep this atop your mind as you become more active in participation in meaningful and purposeful activities.
Your fatigue levels and your planned activities are likely to vary daily. Merge these variances together to set your priorities. “What do I have the energy to accomplish today?” “What is most important for me to accomplish today?”
If accepting help to get dressed in the morning allows you the energy you need to cook for your family, accept the help.
If doing the laundry today prevents you from making it to your daughter’s evening basketball game, skip the laundry.
If doing your self cares (dressing, bathing, and toileting) seemed to take more energy today, schedule a time for rest later in the day.
1. Make a list of the daily activities that are most important to you.
Especially consider the activities which are non-negotiable (example: you have to make it to your neurologist appointment; you are determined to shower independently)
2. Make a list of the activities in which you are willing and capable of accepting help
3. If time and energy permits, begin each morning by making a prioritized “to-do” list for each day, and include the items you would like to get done but can wait until tomorrow if need be.
Find a way to serve others
Communities and individuals thrive when they can:
1. Accept help when they need it
2. Serve others.
After a major medical event like a stroke, the balance of accepting and giving can be disrupted. During the acute phase of a stroke—the 3-6 months following the original event—accepting help is a life-depending need. Thank God for communities of medical professionals, family caregivers, volunteers, and friends who help us in our time of need.
In my experience, my clients who have found a way to flip the switch from ‘receiving help only’ to acceptance and giving live more fulfilled and purposeful lives after their major medical event.
The point of being able to flip the switch is different for everyone. Some people can begin giving again during or very soon after the acute phase. Others need some time to go through the healing and grieving processes. Your cup should be filled before you can pour for others.
The possibilities for serving others are endless and personal. One person may color pictures as a way to say “thank you” for the nurses who cared for them immediately following their medical event. Another person may become highly involved in a support group and be a voice for others who are experiencing similar difficulties. Still another may return to the volunteer or paid work they did prior to experiencing a stroke.
No matter your current abilities, I promise you, someone needs your servant heart.
Community is people helping people. Your community needs you.
1. Think on the ways that you served people prior to having a stroke.
This may have been in your job, volunteer work, with your church, or in your friendships.
2. Consider other ways you can serve others with your current abilities
Seek the advice of friends or family—they are likely to point out your strengths and how you have served them in the past
3. Start with one
Surviving a stroke is a life-altering experience. Should you be in the cohort of people who call themselves ‘stroke survivors’: you are a warrior. I encourage you to live today. Live better tomorrow. And inspire others to do the same.