Navigating life after stroke is daunting, to say the least. In addition to changing your body and mind, a stroke can alter the way you engage in work, leisure, and social activities. Because the effects of stroke are varied and far-reaching, it can be hard to find advice tailored to your unique situation.
It helps to have a good medical team in your corner for targeted suggestions. Nevertheless, there are some pearls of wisdom that broadly benefit stroke survivors.
Here are some of the best things to know as a stroke survivor:
- It's up to you to prevent your next stroke
- Use your affected side or lose its potential to improve
- Check in with your physical or occupational therapist yearly
- Consider adaptive solutions for work and hobbies
- Market your ideas to benefit the survivor community
Having a first stroke increases your risk of having another. About 25 percent of people who have had one stroke will have a second, despite the fact that most strokes are preventable through lifestyle and behavior changes.
The American Heart Association recommends working with your doctor to create a stroke prevention plan focusing on medication, exercise, and diet. Stroke prevention strategies may include things like consistently taking high blood pressure medication, walking outdoors every day, and consuming less sodium.
Consider this: all of your progress can be erased in an instant by another stroke. Minimize future risk and lay the foundation for a successful recovery by making healthy choices now.
Many stroke survivors who have been through rehab are familiar with the phrase, “Use it or lose it”. This favorite saying among therapists describes the brain’s potential to remodel itself after damage through a process called neuroplasticity.
Consistently practicing skills like walking, reaching, grasping, or functional object use can develop new neural connections (pathways for brain messages), resulting in improved performance. However, unused neural circuits break down over time. Your therapist wasn’t kidding—if you don’t try to use your affected side early and often, your brain will reorganize itself in a way that will make it much harder to regain control in the future.
Incorporate your affected side into your daily routine, even if it takes more time. Ask your therapist for recommendations if you are unsure what skills you can safely practice at home or how often. He or she can provide guidance on activity choices, optimal postures and movement patterns, and frequency to ensure you are relearning skills effectively.
Survivors who are dealing with side effects years after stroke can feel let down by the healthcare system, especially if they are no longer in therapy. Individuals who have completed a previous course of outpatient therapies may feel like they have done all there is to treat their symptoms and there is no point in going back.
There are many reasons to see a therapy team throughout your stroke journey. Your therapists can issue or update your home exercise program to ensure you are maintaining function at home and not backsliding. They can assess for orthopedic (bone and muscle) changes that can result from post-stroke weakness or spasticity and prevent you from developing additional complications. Your therapists will collaborate with you to incorporate your personal goals into their treatment plan.
Many health insurance plans cover therapy visits; however, your provider and home state can dictate what type and amount of services are available. Look into your plan details to see if you are eligible for additional outpatient therapy treatment, then discuss your concerns with your primary doctor. He or she can write a referral for therapy if they agree that it is warranted.
Depending on the effects of their stroke, not all survivors are able to return to their previous job. If your medical team thinks you are able to return to work in some capacity, consider vocational rehabilitation. These professionals provide career assessment, counseling, and job placement services to allow individuals with physical or cognitive disabilities to find compatible occupations.
If returning to work is not an option, consider volunteering. Peer mentorship is a rewarding opportunity for stroke survivors to provide ongoing advice and encouragement to someone with a new stroke. Peer mentors are usually at least one year post-stroke and must undergo training before being matched with a mentee. Inquire at local hospitals or search online to learn more about how to become a peer mentor.
If resuming your previous pastimes seems impossible, look into them using the keyword “adaptive”. Adaptive activities are altered to allow individuals with physical or cognitive disabilities to participate. Options like adaptive sports, accessible outdoor activities, and supported conversation groups are just the tip of the iceberg. AbleThrive’s online directory of adaptive hobbies is a great starting point to review old and new leisure pursuits.
Necessity is truly the mother of invention for stroke survivors, who often develop unique strategies, tools, and solutions for everyday problems through trial and error. Some have even turned their ideas into products and services to benefit the survivor community.
Stroke survivor Rosanna Redding designed cooking products to ease meal preparation with one-sided weakness. She now sells inventions including an adaptive cutting board and jar opener on her website, where she also blogs about solutions for cooking and crafting with hemiplegia.
Survivor Christopher Ewing spun his previous experience as a TV host to create Life After Stroke, an online support group and resource network with webpage, podcast, and app formats. Survivor Ella Sofia’s stroke at age 14 contributed to her decision to become a habit coach and blogger, detailing strategies on how to retrain your brain on her website and YouTube channel.
Think about your own solutions and passions as well as a platform to convey them. Sharing your informed ideas may start as a fulfilling hobby that turns into a second career!
The Big Picture
Physical health, work, and leisure were likely a part of your life before stroke, and remain options after. Consider what areas you are currently succeeding in and what you are lacking. Make an action plans with your healthcare team or loved ones to tackle your new goals. Know that you might have to put in hard work or approach things differently, but a productive and meaningful life is within reach.
- Alison Scarpa, OTR/L, CSRSAlison is an occupational therapist and medical device specialist dedicated to helping patients and healthcare providers identify high-tech solutions that optimize performance.