During the safer-at-home orders spurred by the Coronavirus pandemic, Stroke Support Association (SSA) has been holding weekly ZOOM meetings that include both stroke survivors and caregivers. For the first time, on May 12, 2020, we held two separate meetings—one for stroke survivors and one for caregivers, as is our practice when we are able to meet in person.
The survivors’ group was happy to welcome a new person to the meeting, a 34-year-old man who had suffered a stroke in late March, right in the thick of the COVID-19 crisis. He introduced himself, and gave us some background on his stroke and how he is faring. Then Dr. Jane Claus, the facilitator, asked if anyone had any tips to give our guest, whom we hope becomes a regular member.
Karen M, who had her stroke three years ago, said, “I was very surprised by my stroke. I had enjoyed a very healthy, active lifestyle. But I did physical therapy and everything I could to get back to normal—or to my new normal.”
Nicolas D, a professional drummer, said “Right after my stroke, my life was a blank. I was depressed for a while.” He noted that having a stroke is “…like a tsunami hitting you. Or it’s like the stroke is a big foot coming down on a spider, and I was the spider. The scale of what happens to your life is huge. Psychologically you have to adapt to it.”
Mary T said, “You have to be patient. You have to work at improving whatever your [stroke-related] deficits are and be patient with yourself.” She also said that sleep is very important to physical, mental, and emotional recovery post-stroke. “If you have enough sleep,” she said, “you will have more patience with yourself.”
Paul T said, “If you keep trying, things will get better.”
Nicolas D said, “If you have the right attitude, you will be able to go through all this and recover. It’s a different life—it’s a new you, a different you—and you have to accept that. Your before is gone. You are now a mix between your old you and your new you, and you have to accept that.”
Suzie S reported: “I had no speech for a year after my stroke. I was frustrated over the moon, but 15 years later, I feel fine. Back then I did a lot of crying, but I’m happy now.” Suzie went to speech therapy and worked very hard to get her speech back. She walked on the treadmill to improve mobility in her leg. Lou Ann, Suzie’s caregiver, noted that Suzie has been involved with this support group for 13 years now. “I remember Suzie when she was really down,” Lou Ann said. “Going to support groups regularly really helped her.”
Brian M, who had his stroke four years ago, said he is very grateful for this support group, whether in-person or via ZOOM.
Karen M said that before her stroke she had always been an avid reader. “I have books that could keep me busy for the rest of my life, but I couldn’t stay with reading for too long after my stroke. So, I put the book down and go back to it later.” This was a matter of acceptance and adjustment for her.
Before his stroke, Nicolas D taught drumming to 15 students per day. When he went back to work, he started with one student per day, and that was exhausting. The second week back, he had two students per day; the third week, three students, until he built up his stamina. But he was worried for a while, and asked himself whether he could handle a full load of teaching, and whether he could last through a four-hour gig with the blues band for which he was the drummer. He proved that with patience and perseverance he could succeed, and that drumming—with its use of both hands that engage opposite sides of the brain—proved beneficial to his physical recovery.
Karen M said, “Follow the doctor’s orders, exercise, socialize when you can, and be patient. In the beginning, I prayed a lot, and was very thankful for what I still had. Three years later, I’m doing pretty well.”
Gary H said, “You’ll have good days and bad days. Sometimes you’ll wake up raring to go; sometimes you won’t even want to get out of bed. But with time, things will get better and better.”
Nicolas D pointed out that having a stroke might call for incredible adjustments, but that the person you were before the stroke is still here. “That first year,” he said, “my brain and my body were injured, but I realized even then that I still have my mind. I was still there.”
Written by Betsy Hardiman
If you are a stroke survivor or a family member/caregiver of a stroke survivor, and you would like to attend a free ZOOM support group, please email email@example.com.
Support Groups are offered by ZOOM every Tuesday
- Survivors’ Group: 10:00-10:45 AM
- Caregivers’ Group: 11:00-11:45 AM