Sunday, August 23, 2015

Stroke Survival Sunday:Support Groups

My support group
If you've had a stroke or brain injury, try and find a local support group with other stroke survivors and/or traumatic brain injury survivors. I think you'll be glad you did.

After my stroke I delayed in going to a survivors group because I really don't do well in crowds since my stroke. I figured it would just be too much input and overload all my circuits. Finally, I broke down and went. What could it hurt to go to one meeting? I never had to attend another one if I didn't like it. Plus, my speech therapist was one of the leaders of the group so it wouldn't be as if I didn't know anyone.

We were a fine pair walking into the conference room. Me, on a cane with one arm drawn up to my chest and halting speech, and my deaf husband at my side. We entered the room and found a spot to sit. A pad of paper was passed around to sign in on which my husband filled in.

As the meeting was called to order, I looked up to the co-leader. I knew her. Somewhere in the deep recesses of my mind recollection gears chugged. Finally, it hit me. We went to high school together. Then after an introduction, the speaker was a nurse from the health department. I knew her also from high school and we attend the same church. I turned and saw the physical therapist from the service I used after I came home. I was real comfortable now. It was beginning to feel like old home week. The other stroke survivors I didn't know from Adam, but that was soon amended as we went around the room with introductions. My memory of new names and faces had gone out with the dish water since my stroke so it would take a while to remember a name with a face...but they had the same problem too so I didn't feel so bad.

I met people who had battled this stroke recovery thing for years and some who had been post stroke for a decade or more. I didn't feel so out of place like I do in church among "normal" people. Some of the people were worse off than me and some were getting along fine or sort of. Are you ever really fine again after a stroke? It seems like there is always something different about you. Anyhow, I was made comfortable at the meeting and decided to attend more. I felt a sense of camaraderie with these folks.

This was a group I could help and be helped by. That's always a plus in any group function. Getting involved and being useful. I attended two more meetings before  my husband started his down hill slide. It would be another two years before I attended another one. But the leader of the group corresponded by emails and phone calls. My suggestion of visiting new stroke patients while they were in the hospital is now a big part of the group and membership has grown. A stroke exercise group is forming and a few other things are in the works. So even though I was physically absent, I was still a part of the group.

It sort of worked full circle for me when I started dry needling. My speech therapist and support group leader is the spouse of my therapist doing the needling. Small world, huh? No, just a small to mid sized town. Although, I did not hear about dry needling from her but my occupation therapist. My stroke group even sent flowers after my husband died.

A good support group is like a shot in the arm of "I can do it." Being around others in the same boat as you are helps you focus away from yourself. If you were like me especially, where I didn't have much contact with the outside world at the time. It made me feel accepted when all I could see was my limitations. It opened me up to possibilities through helping others. Having a self central focus is not a good thing after a stroke. Nothing makes you feel more abnormal.

Outside the group activities is a definite perk of a support group. For us, there is a clay class which boosts your creativity. I haven't been to one yet, but I do plan to go to at least one to see what it's all about.

We had an outing on a shrimp boat excursion tour. We were comfortable and away from danger in an enclosed glass room while the shrimpers fished. We were even treated to a low country boil. So what if I couldn't use my fork or knife properly, neither could anybody else. I do have to admit that eating a low country boil with only one working hand was definitely a challenge and a tad bit messier than usual. But the point was, I was out of the house. I was in good company. and lastly, I had a blast!

So if you have not looked into a stroke support group other than online, I would suggest you check it out. It's a whole different set of realities joining in person with other stroke survivors. That's not to knock the strong stroke tribes we have online, but you are still cooped up within your four walls. Get out and smell the fresh air. Be a part of life instead of sitting on the curb. Take a step out of your comfort zone to engage others in a safe environment of it being people like you, a stroke survivor. Nobody will understand what you are really going through like another survivor.

Not sure where to look for a group? Try a local hospital. Try the Council on Aging. Ask your local health department. Check the rehab centers, or neurologist's offices. Even try your local Chamber of Commerce. Good luck. Now stop sitting there watching the world pass you by. Join in and get involved with life again. You've been alone far to long.

Nothing is impossible.


  1. I'm glad you're getting out, Jo! {{{{hugs}}}}

  2. I agree with you that finding a support group is a good idea, but I have a warning for those who go looking: the survivors at my local group are all OLD; not one was trying to do what I was struggling with - to go back to work or return to any athletic endeavors. I'm sure there are others with younger, more vibrant, members, but not here.

  3. Barb, you are right. If the group had been a bunch of old foggies, I probably wouldn't have gone again.


I love to hear from you! Agree, Disagree, matter. Even if it's to say you were here.