The website is in the beginning stages and Pat is requesting that anyone who has a personal story that they want to share about life as an amputee please forward to her at
Pat.firstname.lastname@example.org If you require any information or assistance in writing or editing your story please feel free to ask Pat, or any of the Amputee support group staff, for help.
The personal stories can be a “slice of life” it doesn’t have to be a complete life history. For example, you may want to share a story about a recent trip or the experience of returning to work after an amputation. Pictures are also welcome.
Also, please let Pat know of any additional information or topic areas that should be added to the existing topic areas.
Minutes from the amputee support and education group will also be included on the website.
2) Other Topics discussed:Group Size: Discussion re: whether we should open up the support group to amputees from other regions. Those present indicated that we should open the groups to every amputee and their family and friends. Several attendees mentioned that the group could also be opened to anyone with a disability or anyone who is interested in learning more about amputation.
Discussed impact of group size on dynamics and the need for a larger venue if more people attend. Also discussed the possibility that we meet with a larger group every few months, and the smaller group the remainder of the time.
Group mission statement: Group discussed the possible development of a mission statement so people are clear about what the group is meant to be. Some felt that it was too early to form a mission statement and we need time to see how the group evolves.
Peer Support and Education: All group members expressed the importance of peer support and educating others about life as an amputee. Some felt that this should be part of the mission statement for the group. The education (i.e. learning about pain control, skin care, etc) aspect of the group was also seen as being important.
Peer training: interest expressed in having formal peer support training so that group members can learn skills when dealing with crisis situations etc.
Staff members to explore the peer support training programs that could be adapted for the amputee group.
Websites as resources: Linda mentioned that people need to be careful about referring people to amputee related websites because some of the recommendations about medication and other treatments may not be appropriate.
Linda also cautioned that there are websites that prey on young, women amputees.
Meetings in the summer?
Attendees agreed that we should continue to meet over the summer. Staff available to continue to help with organization. Summer meetings could be open discussions (as opposed to education sessions) as many people are out of town in the summer.
Pain (over 2-3 sessions) covering medical information and personal accounts of dealing with pain. Ryan felt that 2-3 sessions on pain would not be sufficient especially if looking at all the differed models of pain management (psychological versus pharmacological) plus practical tips on pain management from the group members. He also suggested that we ask someone from the Vancouver Pain Clinic to speak about pain control and weaning off opiod analgesics.
Suggestion also made to explore proactive physical ways of reducing pain such as weight management as well as techniques for managing pain through attitude, positive thinking and distraction.
Taxes: Kim mentioned that her father is an accountant who is very knowledgeable about tax credits for people with disabilities. She stated that he might be willing to do a presentation about this topic.
Impact of amputation on family members (spouses and children) and ways to support them better –some group members discussed how their family members were not well supported in the initial stages of amputation and how this lead to family breakdown.
Ways to support a new amputee in the acute stage—importance of initial counseling, peer support (being connected with others who are living a full life after amputation), books, educational materials. Some individuals who had planned amputation shared stories about how they had to struggle to get information and meet other people with similar amputations. All agreed that a support network should be in place to meet these needs.
Home Modifications –practical tips re: changes that can be made in the home, things learned from “trial and error” (i.e. Ryan stated that his “Lazy Boy” recliner was the best purchase that he made and he even managed to get some funding through ICBC to purchase this item).
Peer training: discussed need to have a code of ethics when providing peer support. Most participants felt that peer training should be addressed sooner rather than later.
Things that have helped people get through the early stages of amputation i.e talking to someone who has the same type of amputation prior to the surgery (if planned), books, education, being connected with others who are living a full life after an amputation.
Dave suggested that we send out a survey with the next letter to ask group members what topics they would like to see covered over the summer.
During the brainstorming session for topics, the group opened up about their experiences and the challenges they faced emotionally during and after amputation. The support and encouragement group members were sharing with each other was amazing. The members shared stories about how they survived when it felt as though there was no hope. Staying strong for children was mentioned as something that helped some people through difficult times. Others mentioned that each day is a gift that should be celebrated and how important it is to remember how far you have come and how much more there is to do and experience. Others mentioned the importance of not labeling yourself but being gentle with yourself and allowing time for grief, tears, anger and frustration. There was also a discussion about the differences in experiences between those individuals who have had a traumatic amputation versus an “elective” amputation secondary to cancer.
The important themes brought forward in this conversation, and the opportunity it provided for invaluable peer support, illustrated the importance of open discussion. There will be more opportunities for continued discussion in future group meetings.
NEXT SESSION: June 21, 2005
Energy conservation- Presentation by Linda McLaren, Physiotherapist and Dianna Mah-Jones, Occupational Therapist