Tips to Maximize Stroke & Aphasia Recovery
By Paul E. Berger
I had a stroke from a ruptured aneurysm when I was 36. I was severely disabled, paralyzed on my right side (“hemiplegia”) and unable to talk, read, or write (“aphasia”). I had inpatient rehabilitation until my insurance ended.
Although I made great progress in the hospital, when I came home I could not walk, I could only say a few words, and I was struggling to regain my reading skills. I wanted to continue my recovery, and believed that I could get better. It was hard, but I did it. Here’s how you can do it too:
Tip # 1: Take responsibility for your recovery. Consider your doctors, therapists, and other health care professionals as partners or coaches who guide you in making decisions.
Tip # 2: Set treatment goals that are important to you. You and your family should work with your health care “coaches” to set goals that will motivate you to work hard on your recovery. [See my article, “Setting Goals to Recover from Stroke,” and my wife, Stephanie’s article, “Setting Goals for a Stroke Survivor: From the Caregiver's Perspective.”]
Tip # 3: Maximize inpatient therapy. Research in the field supports what I learned from my own experience: you should push for as much intensive rehabilitation and therapy as you can take every day, starting on the first day. It works! Also, maximize the use of new technology, devices, and equipment you can receive during your inpatient stay for diagnosis, evaluation, and treatment. Once you are discharged, insurance coverage rules are different.
Tip # 4: The end of insurance coverage does not mean the end of recovery. Physicians often prescribe the amount of therapy that is typically covered by insurance, and some therapists scale their treatment plans the same way. Generally, they do this because they believe that patients can’t pay for therapy not covered by insurance. Work with your therapists and physicians to develop and continually revise a treatment plan that targets your individual needs, not your insurance coverage.
Tip # 5: Before insurance ends, try to negotiate more. Since insurance companies, including Medicare, set general rules for coverage, find out exactly how many dollars or sessions your plan covers for each type of therapy. If you have a treatment plan that goes beyond their rules, urge your therapist or physician to call or fax on your behalf to extend coverage.
Tip # 6: Consider all forms of therapy and rehabilitative care for stroke recovery. This means speech, occupational, physical, respiratory, recreational, psychological, spiritual, and vocational. Consider alternatives like yoga and massage. The deep breathing I learned in yoga helped me in many ways, especially in giving public presentations.
Tip # 7: If your insurance doesn’t cover it, look for alternate funding sources. For example, certain programs have sliding fee scales based on need, including county recreational and educational resources. There are government-funded grants and resources for adaptive equipment. Vocational rehabilitation programs may cover certain types of therapy and skills retraining that are part of a plan to return to work. A college-based program may offer private and group sessions through a clinic that provides free or reduced-priced therapy. I believe that therapy is worth it, so I paid out of my own savings. To stretch my dollars, I hired a tutor from a high school tutoring service 3 days a week to drill the exercises that my speech therapist assigned.
Tip # 8: Do multiple activities every day. Stroke and aphasia recovery is the result of hard work every day. Going to therapy sessions is not enough. You need to extend what you learn in therapy and stimulate your brain and your body with a variety of activities every day. For example, every morning, before my shower, I do a series of stretching exercises recommended by my physical therapist. Most afternoons, I take a break from work and walk for 20 or 30 minutes. Sometimes, I combine my walk with grocery shopping or other chores, which build life skills. I challenge my brain by participating in networking groups, volunteer organizations, Toastmasters, group speech therapy, and hobby clubs. I push myself at work and at home to learn new things, to be creative, and to read and write everyday.
Tip # 9: Try new things. You should keep an open mind and a positive attitude toward your stroke recovery. Medical device and treatment innovators are focusing more and more on stroke, and any day something new could be just the thing for you. Over the years, I have tried many new products and activities. I have used various devices to support my weak right arm and leg, electrical stimulation on my weak right hand, and state-of-the-art equipment in my physical therapist’s office. I have participated in cognitive language research studies, and used computers and other speech therapy innovations. All of these things have contributed to my recovery, to achieving my goals, and to living a full life.
Tip #10: Get Involved. You can find new and different products, services, and approaches to stroke and aphasia recovery by getting involved in local programs. Ask to serve on consumer committees for your hospital or stroke association, or join with other stroke survivors and professionals to start your own group. I serve on the consumer advisory board of George Washington University Hospital, and the Stroke Comeback Center. If I can do it, you can do it too!
Copyright (c) Paul E. Berger & Stephanie Mensh
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