Stroke Survivors' Support Group FAQs
RHCI's Stroke Survivors' Support Group is facilitated by Jim Graham, founder of the RHCI Stroke Survivors' Support Group, and Leanne Vasconcellos, co-facilitator. Both are stroke survivors. Jim was a machinist, husband and grandfather when he had a stroke at age 61. Leanne was 27, a widow and mother of two small children when she had a stroke.
Q. How did the Stroke Survivors' Support Group start?
Jim - In 2002, I was going about my business with no particular worries when I had a stroke. I like to tell people that before the stroke I was fat, dumb, happy and healthy as a horse. I felt invincible. After was another matter. My left side was paralyzed. I knew my life as it had been was over.
After my first day of trying therapy at RHCI, I realized how much I had lost. I had an emotional meltdown. One of the rehab aides saw my distress, held my hand, told me not to give up, and stayed with me. Her understanding and kindness had such an impact. Throughout my rehabilitation, the encouragement and support of the whole RHCI team - plus the love of my family - helped me get through a very difficult time.
Later, I thought my experience could help others. I approached the leaders at RHCI and asked if we could work together to start a support group. There was immediate enthusiasm, and a couple of months later the Stroke Survivors Support Group was born. We've been going strong ever since.
Q. How has the Stroke Survivors' Support Group helped you?
Leanne - When I had my stroke 20 years ago, I had to figure everything out on my own. It was devastating. Sometimes family and friends don't understand. They may expect you to "get over it." So you deny your own experience to make it easier on them. That just prevents you from feeling the results of the stroke and your own reality. I kept thinking I was fine, but until I went through the grieving process, nothing was really real.
When I started [in the group], I was in denial, just trying to fight my way through. Now I'm living my way through and loving every minute of it. Volunteering is my life-saver. I'm amazed -- the patients are so grateful and enthusiastic. And I love the people at RHCI. They are kind, considerate. They have a warm heart.
Q. Do medical professionals run the group?
Jim - Our model is stroke survivors helping stroke survivors and their families. We do invite medical professionals to speak on various subjects important to survivors and their families, but the group is run by stroke survivors.
Q. Are families allowed to come to meetings?
Jim - Absolutely. The group provides support for families and caregivers as well as for stroke survivors. In fact, that's a very important part of our mission, because a stroke affects the whole family, not just the person who had it.
Leanne - Most family members really like the meetings because they benefit, too. They get to hear things they might not hear otherwise. Both stroke survivors and family have permission here to say what's on their minds.
Q. What happens during a typical meeting?
Jim - Most of the time we break the meeting into two parts. We have a speaker talk to the group on various subjects relating to coping, new rehab techniques, the need for humor and the like.
We also take a portion of the meeting to hear questions from members about issues they're dealing with. We share little tricks we've learned from our day-to-day experience to help each other do a little better. We also share information about what services are available in the community.
Q. What can I expect at my first meeting?
Leanne - Jim and I go around to people here the first time to just welcome them. Once I explain I had a stroke 20 years ago, they want to know what my experience is like. It's a big door-opener.
Jim - What most people find is that it's a group of very warm, outgoing people willing to share their experiences with others who may be new to this stroke surviving game. The group as a whole offers a pat on the back, a kick in the butt or a hand to hold - whatever is appropriate.
Leanne - When I first came to the group, I didn't know what I was getting into. What I came to was a warm, loving environment. There were other women who were my age who had had strokes - we could relate to each other. We had common ground on children.
Jim - One thing that impresses me over and over is that people at the meeting are not embarrassed or ashamed to shed a tear during the meeting. Baring your emotions with people who understand where you're coming from can be very freeing. You feel comfortable because a lot of the people in the room are sharing the same emotions. It's a safe place to share anger, frustration, hope. We often ask - does anyone else ever feel that? Invariably, they do.
Q. What kinds of problems do people bring to the group?
Jim - People bring up all kinds of issues. My favorite story is about a stroke survivor's wife who would always choose the wrong tool when her husband sent her to the basement to get a tool he wanted. He would get very agitated and frustrated. When she raised this during a meeting, another caregivers shared her family's solution. This family photographed all the tools and put them into a scrapbook. Whenever the husband wanted a tool, he just pointed to the right tool in the scrapbook, which his wife could then find without any problem. It was a perfect solution, which the first wife adopted with great success.
People don't mind talking about what's on their minds in the group. People are willing to share things that helped them out even when they are intimate in nature. Everyone becomes friends. Some survivors have started socializing together.
Q. What are some common questions people ask?
Jim - Many people have asked if the stroke affected my emotions. After the stroke, I'd cry for no specific reason - because it was 2 o'clock on Saturday. I was embarrassed by it. I didn't want others to know I had "a weakness." Learning that a lot of stroke survivors have similar responses made it easier for me to deal with the emotions. It's reassuring to know that it does get easier to deal with and control these emotions as time goes by.
Leanne - A lot of people ask when will they be "back to normal." It's hard to say "I don't know." It's such an individual thing. It could be a year, and some things will never be "back to normal."
Jim - As time goes by, things get easier and you learn ways to deal with the things that don't resolve. Everyone wants 100% recovery. That may or may not be true. But most people continue to improve if they put the effort into it.
Q. I get lots of medical information from my doctor. What will the support group give me that's different?
Jim - In the group you get practical information, helpful hints for day-to-day life based on experience. The doctor knows what's happened to you medically, but he or she really hasn't walked in your shoes
Also, people who come are not there only to get support - they're there to give support to others. It helps survivors to realize they can contribute something to life, even after a devastating stroke. They provide understanding, compassion, encouragement, helpful hints - and a lot of humor - to others in similar circumstances.
Q. How many people are in the support group?
Jim - We have about 120 members. Usually 30 to 40 come to the meetings. We also hold two social events during the year - a summer barbeque and a holiday party. Everyone looks forward to those!
Q. What's the age range?
Jim - The age range is from early thirties to late seventies and a lot in between. People have a wide range of impairment, too.
Q. When and where are meetings held?
Jim - We meet on the second Wednesday of each month from 1:30 - 3:30 in the cafeteria of RHCI. We don't meet during June and July.
Q. Do you have to pre-register to come to a meeting?
Jim - No. Our meetings are open to anyone with an interest in stroke recovery - the stroke survivor, caregiver, family members. RHCI provides a comfortable place to meet and an enjoyable snack bar. Members really appreciate the goodies! I'm also happy to speak with anyone before a meeting if that would be helpful.
Q. How can I get more information?
Jim - Just get in touch with me. You can reach me at RHCI by calling the Volunteer Office at 508-833-4043. You can also e-mail me at jjgstroke@aol.com.
