If you have just started on the pump, or if you feel like you need to catch up with technological advancements in pump therapy, a support group could be the best place for you to begin. Undoubtedly, the advice of a peer who has experienced the challenges of going on a pump can be the best help for a pumper just starting out.
Darrell Stone, age 43 and a type 2 diabetic, was the first person in his town Harrisonburg, Va. to go on a pump. “My doctor had never worked with an insulin pump before, so my diabetes educator suggested I join a support group,” says Stone. He saw a notice on the ADA information board for a pump group that met over the internet and decided to give it a try.
Through the group Stone corresponded with fellow pumpers just starting off and others who were more experienced and had words of wisdom to share. “A pump group is ideal for people just starting out who have a lot of questions,” advises Stone.
Stone has been monitoring the group for little over a year now. “I usually spend 10 to 15 minutes a day with the chat group,” he says. “And I’ve made many friends through the forum whom I correspond with now regularly.”
A Human Touch
“It comes down to the personal connection to make it feel real,” says Lisa Schwarz, CDE, ARNP, MSN, from Coral Gables, Fla. Schwarz, a type 1 diabetic for 29 years, has been on and off the pump since 1979. In 1986, she found a support group to overcome her feelings of isolation since there were few people in the country on a pump at the time. “No one else can really understand what you are going through except those who are experiencing the same thing,” she says.
Besides being a member of a pump support group, she has also facilitated and helped start groups in the past. “I think anyone who is considering the pump or is already on the pump should try a support group, but do some screening first.” Schwarz also suggests that a new pumper consult with a CDE or MD after a first visit to a pump group because they may experience an information overload. As an example of this, she cites one new pumper who had a panic attack because she thought her pump was going to break down. “All the talk just overwhelmed her, and she couldn’t process it so she panicked,” says Schwarz.
In some cases, support groups will have a special focus. In the past, Schwarz has been a member of an unofficial chapter of the International Diabetic Athletes Association (IDAA) in Ft. Lauderdale, Fla. This is a group of people on the pump who get together to ride horses, water ski, roller blade and take part in other sports every month.
Another positive aspect of pump groups are that spouses and other family members can participate and voice their concerns while learning about what their loved one is going through on the pump. “Wives can relate to other wives about their husbands who are on the pump and vice versa,” says Schwarz.
She remembers a support group meeting during an especially hot season in Florida when a concerned wife discussed a special cotton belt she designed for her husband’s pump so that he could feel more comfortable. “By the end of the night, she had passed her new design around and everyone was trading ideas,” Schwarz says.
John Rodosovich, a type 1 for 33 years started a successful pump support group, called the San Diego Pumpers, 15 years ago.
“We started the group because people often learn the most helpful things on their own and then they can share their tips with others in the group,” says Rodosovich. “Pump groups are also a great opportunity for people interested in starting pump therapy to ask pump representatives about how much they cost and how they work,” he says.
The group consists of 50 to 75 people and meets once a month at a local hospital. Rodosovich also puts out a newsletter financed by donations from the group. The newsletter currently has a circulation of over 400 people.
However, he reminds us that many groups have a tendency to fizzle out. During his 15 years with the San Diego Pumpers, Rodosovich has developed these tips for starting and keeping a group running:
- Don’t exclude anyone.
- Don’t ask people what they want to discuss because the group will lose focus. Decide on a topic beforehand and stick with it.
- Have a nurse or a doctor come for half of the time, then allow the second half for discussion.
- Make sure that the discussion is evenly distributed and that none of the members dominate the group’s discussion.
- Make sure that the meeting always takes place in the same location, so that members don’t become confused about where to meet.
“Pump groups are a great chance for everyone to get involved – family members, spouses,” says Schwarz. “Most doctors now will just automatically send their patients to a pump group for information.”
If you would like to find a pump support group near you contact your local pump representative at either Disetronic (800) 688-4578 or MiniMed (800) 933-3322 for information.