American Stroke Association Convention

American Stroke Association Convention

November 2003

Report

by Kathy Bosworth

Have you ever seen an ad for a conference in your area by the American Stroke Association? Have you contemplated it but then thought you didn't have the time or energy for it? I attended one and would like to share some of my thoughts and experiences with you. Hopefully, you will see that it is a valuable, rewarding experience that can provide you with helpful tools, information, and a connection to people that you need to meet.

Let me start off by telling you that I was a caregiver for my mother, a few years ago. I no longer am, but that does not stop me from speaking to groups about the things I learned after my mother suffered a stroke. It was a mind-boggling experience to deal with doctors, rehab facilities, financial realities of long-term care, and the many unknowns of a stroke. I was asked to be a keynote speaker at the Life After Stroke conference in November. It was an honor to be asked and I hoped I could offer something to the people that came.

My first pleasant surprise was to see how many people did come. People came in wheelchairs, with walkers, and canes. Many came under their own power on their own two feet. The loving hands of family members guided some. But they came! It was a poignant moment to look out at the sea of faces and feel the connection that existed in the room.

I found that I learned more from them than I would ever have imagined. Courage was abundant in both the caregivers and the survivors. There was a question/answer segment after I spoke. One woman asked what she should do now that a physical therapist told them that their loved one had reached a plateau. Before I could answer, another woman asked if she could answer that one. She sat beside her husband who was a survivor for eight years. She said, "I have a hard time being told my husband has reached a plateau. It is my experience that when a therapist says that, THEY are the ones that have reached a plateau, not the patient. Progress can continue if new things are tried. It may be time for you to find a new therapist." I thought her advice was right on target. She knew this from experience and I am sure everyone in the room was empowered to look elsewhere if they were told their loved one had reached a plateau.

This segment of the program took on a life of its own. People began to talk to each other and answer questions based on their experiences. One woman brought up the need for a stroke support group. When people complained that there were none in their area, one woman spoke up. She said that she could not find a support group after her stroke but knew she needed people to talk to that understood her fears and concerns. She finally realized that there was no reason why she couldn't start her own support group. She admitted that it was the best thing she ever did. She advertised a little, and people came. She created a new group of friends and the experience has proved a lifesaver for her.

I met so many people that day and they had a powerful impact on my life. There were four survivors sitting at my table. If they hadn't told me, I never would have known. Two had TIA's, one had a very severe stroke, and one had multiple strokes. But their honest, upbeat attitude was truly inspirational. They had battled their way back and were getting on with their lives. I also met a few who were unable to walk, but they talked with pride about their progress in rehab. Although some had difficulty speaking, they conversed with a hug or a handshake. Each person was unique. They all gave me hope. Since my mother's stroke was a worst-case scenario, I must admit that thoughts of a stroke being hereditary haunted me. Seeing so many people with success stories to share was enlightening and comforting.

The conference was an all-day affair. My talk was a very small part. There were many breakout sessions that people could attend. One could choose to go to sessions on intimacy after stroke, or managing swallowing disorders, nutrition, and caring for the caregiver. Another breakout had segments on traveling with disabilities, using gizmos and gadgets to enable independent living, and emotional changes after stroke. A lawyer gave a talk on legal issues and how to protect your assets. Oh yes, breakfast and lunch were also served. It was a full day and I know that survivors and caregivers gained a vast array of knowledge, compassion, and moral support from the many people they met.

I sometimes wonder why I am still involved in the process to connect with caregivers and stroke survivors. Then, a very wise woman recently said to me, "Once a stroke has affected you or a loved one, you become a part of the stroke family forever." How true! I continue to have this need to share the things I learned. Let's face it; the stroke patient suffers the hardest hit of all. That goes without saying. But the family members are the ones to make tough decisions, deal with medical personnel, and make sure the patient's needs are met. It is a huge process that includes many variables and involves a lot of combined hard work, patience and time. Spreading our stories and sharing with each other is a necessary tool in making it though. Loneliness and isolation should not be a part of a survivor or caregiver's life.

The next time you see the American Stroke Association advertising a conference in your area; please consider attending. You won't be sorry. Whether you are a survivor or a caregiver, it is so important to make the connection to other people that really know how you feel. Many well-meaning people think they know what you are going through, but it is a hard one to explain. The exchange of knowledge and first hand experiences from others could enhance your life. It certainly enhanced mine.

Be kind to yourself and take it one day at a time.

For further information on finding a conference near you, go to: http://www.americanheart.org/

Click on stroke site and log onto your area. If none are listed, email your local chapter to inquire.

Kathy Bosworth is author of: "Your Mother has Suffered a Slight Stroke"

http://www.authorsden.com/kathybosworth

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009