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Talking with other asthmatics helps me cope with my asthma
Talking With Other Asthmatics Helps Me Cope With My Asthma
O
n March 31, 1990, I found it so difficult to breathe that I was rushed by ambulance to Beth Israel Medical Center, where I stayed for six days. I had
had m y first life-threatening asthma attack, and I never wanted to have one again. I emerged from that experience unsure of what had triggered the attack and looking for reassurance and guidance from people who had been through similar experiences. A m o n t h after m y attack, the music director o f m y church had an experience similar to mine, except his was worse. H e had to be intubated, meaning that a tube was put down his throat to help him breathe. Afterward, we talked together about our experiences. I quickly realized how valuable this could be to compare notes with others. I figured there had to be a support group out there somewhere for people like us. As an experienced reporter and prospect researcher, I was sure I could find a support group. I was amazed when I couldn't locate one in all of Manhattan (population 1.4 million). The only one I found in searching the other boroughs of New York City (population 7.1 million) was eight miles away in the farthest reaches of Queens. I told my pulmonologist that I wanted to start a support group. She informed me that one of her other patients had expressed interest in starting such a group. After checking with him, she gave me his name and phone number. The next Saturday morning he, our music director and I met at a local luncheonette. Over coffee and rolls, the three of us talked. Before we knew it, two hours had rolled by and we were still deep in conversation. We decided to meet in the same place two weeks later and, in the meantime, try to find other like-minded asthmatics. At the second meeting we had a fourth man. We quickly realized how individualized asthma can be. We talked about food allergies, drug allergies, and indoor and outdoor pollution. We compared notes on doctors, emergency room experiences, hospitals and pharmaceuticals - - particularly new drugs. Although our conditions dif30
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fered and our experiences varied as well, everyone's basic goals were the same: keeping out of the emergency room and functioning at our best. We were enthusiastic about our meet:ings. We were also certain there were more people out there who could benefit from a support group, but getting the word out that our little group existed was daunting. In Manhattan, we have no affordable citywide newspaper in which we could place a notice. We spoke to our doctors, but soon realized that not all doctors understand the value of support groups. We put signs up in local supermarkets and on library bulletin boards. Eventually, we found the local chapters of the American Lung Association and the Asthma and Allergy Foundation of America, which were both helpful in directing people our way. While it was not easy to find fellow asthmatics, when we did we were often greeted with: "Oh, I'm so glad I found you. I've been looking all over for a support group!" One of the things the group taught us from the beginning is that there is strength in diversity. We came from different backgrounds, had different doctors, different
asthma "triggers" and different experiences handling asthma emergencies. But, despite these differences (or in some cases because of them), we could all learn from each other. In Manhattan, particularly, there is great diversity in income. We deliberately sat in a circle, for we were all equal in our ability to contribute and learn. We have realized that no one has all the answers and everyone has fears. But we have also learned that the fears are alleviated, at least in part, by talking about them. We developed a system of giving everyone a chance to speak by going around the room and letting each person answer the question, "How have you been since the last time you were here?" We soon outgrew the luncheonette, which was too noisy anyway. But finding a suitable site was difficult. It had to be free. It had to be centrally located. We tried meeting in someone's apartment, but one person said she was allergic to the resident dog and another was allergic to some plants. We wanted everyone to feel comfortable in the surroundings. After a lot of experimenting, we ended up, for several years, at an inexpensive, centrally located and reasonably clean restaurant. It had a back room, well away from the noise and smells of the kitchen. We each had separate checks. Some of our meeting places over the years have included a first floor, wheelchairaccessible community meeting room in a housing complex; a room in a public library; and for our emphysema group (which we eventually formed), the dining
room of a senior housing center. The cost of starting a group is minimal. First, the site should be free. Speakers attend in the interest of public health, so they are free, too. The expense is publicity, and post cards and phone calls to remind people of meetings. We financed our initial expenses by passing the hat. We still do. When we wanted to add more support groups, we found a local foundation that generously helped us. Now we have five groups. When we wanted to start a newsletter, the foundation gave us seed money. Now
Respiratory News & Views reports on the talks that medical experts give at our meetings, as well as other relevant matters. Although listening to speakers and talking with fellow asthmatics is very helpful, one thing we stress in our support groups is that attending our meetings in itself isn't going to make one's asthma improve. Good asthma management occurs when the person with asthma is motivated to do something to control his or her illness. That's why we call our group the Asthma/Emphysema Self-Help Group.
--John Leaman (To inquire about joining this support group contact John at 212-777-0486.)
ASTHMA MAGAZINE
to
subscribe
call 1.800.527.3284
] 31
O
n March 31, 1990, I found it so difficult to breathe that I was rushed by ambulance to Beth Israel Medical Center, where I stayed for six days. I had
had m y first life-threatening asthma attack, and I never wanted to have one again. I emerged from that experience unsure of what had triggered the attack and looking for reassurance and guidance from people who had been through similar experiences. A m o n t h after m y attack, the music director o f m y church had an experience similar to mine, except his was worse. H e had to be intubated, meaning that a tube was put down his throat to help him breathe. Afterward, we talked together about our experiences. I quickly realized how valuable this could be to compare notes with others. I figured there had to be a support group out there somewhere for people like us. As an experienced reporter and prospect researcher, I was sure I could find a support group. I was amazed when I couldn't locate one in all of Manhattan (population 1.4 million). The only one I found in searching the other boroughs of New York City (population 7.1 million) was eight miles away in the farthest reaches of Queens. I told my pulmonologist that I wanted to start a support group. She informed me that one of her other patients had expressed interest in starting such a group. After checking with him, she gave me his name and phone number. The next Saturday morning he, our music director and I met at a local luncheonette. Over coffee and rolls, the three of us talked. Before we knew it, two hours had rolled by and we were still deep in conversation. We decided to meet in the same place two weeks later and, in the meantime, try to find other like-minded asthmatics. At the second meeting we had a fourth man. We quickly realized how individualized asthma can be. We talked about food allergies, drug allergies, and indoor and outdoor pollution. We compared notes on doctors, emergency room experiences, hospitals and pharmaceuticals - - particularly new drugs. Although our conditions dif30
ASTHMA MAGAZINE
to
subscribe
call
1.800.527.3284
fered and our experiences varied as well, everyone's basic goals were the same: keeping out of the emergency room and functioning at our best. We were enthusiastic about our meet:ings. We were also certain there were more people out there who could benefit from a support group, but getting the word out that our little group existed was daunting. In Manhattan, we have no affordable citywide newspaper in which we could place a notice. We spoke to our doctors, but soon realized that not all doctors understand the value of support groups. We put signs up in local supermarkets and on library bulletin boards. Eventually, we found the local chapters of the American Lung Association and the Asthma and Allergy Foundation of America, which were both helpful in directing people our way. While it was not easy to find fellow asthmatics, when we did we were often greeted with: "Oh, I'm so glad I found you. I've been looking all over for a support group!" One of the things the group taught us from the beginning is that there is strength in diversity. We came from different backgrounds, had different doctors, different
asthma "triggers" and different experiences handling asthma emergencies. But, despite these differences (or in some cases because of them), we could all learn from each other. In Manhattan, particularly, there is great diversity in income. We deliberately sat in a circle, for we were all equal in our ability to contribute and learn. We have realized that no one has all the answers and everyone has fears. But we have also learned that the fears are alleviated, at least in part, by talking about them. We developed a system of giving everyone a chance to speak by going around the room and letting each person answer the question, "How have you been since the last time you were here?" We soon outgrew the luncheonette, which was too noisy anyway. But finding a suitable site was difficult. It had to be free. It had to be centrally located. We tried meeting in someone's apartment, but one person said she was allergic to the resident dog and another was allergic to some plants. We wanted everyone to feel comfortable in the surroundings. After a lot of experimenting, we ended up, for several years, at an inexpensive, centrally located and reasonably clean restaurant. It had a back room, well away from the noise and smells of the kitchen. We each had separate checks. Some of our meeting places over the years have included a first floor, wheelchairaccessible community meeting room in a housing complex; a room in a public library; and for our emphysema group (which we eventually formed), the dining
room of a senior housing center. The cost of starting a group is minimal. First, the site should be free. Speakers attend in the interest of public health, so they are free, too. The expense is publicity, and post cards and phone calls to remind people of meetings. We financed our initial expenses by passing the hat. We still do. When we wanted to add more support groups, we found a local foundation that generously helped us. Now we have five groups. When we wanted to start a newsletter, the foundation gave us seed money. Now
Respiratory News & Views reports on the talks that medical experts give at our meetings, as well as other relevant matters. Although listening to speakers and talking with fellow asthmatics is very helpful, one thing we stress in our support groups is that attending our meetings in itself isn't going to make one's asthma improve. Good asthma management occurs when the person with asthma is motivated to do something to control his or her illness. That's why we call our group the Asthma/Emphysema Self-Help Group.
--John Leaman (To inquire about joining this support group contact John at 212-777-0486.)
ASTHMA MAGAZINE
to
subscribe
call 1.800.527.3284
] 31