Amputee Support and Education Group Minutes from September 20, 2005



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Amputee Support and Education Group

Minutes from September 20, 2005


Attendees: Mike, David, Rick, Scott, Christian, Kim, Jeff, Manas, Edith, Virginia, Ryan, Tanya



Staff: Shelley, Carey and Stephanie
1)Travel to Australia: Virginia shared her stories about her 6-week trip to Australia. She was able to arrange a house swap with a couple from Australia. She arranged this through a company called HomeLink where you can view potential homes throughout the world (See website: http://www.homelink.ca/ ).

  • To list your home, you must join the website so that you can post a picture of your home, list the amenities, the location and contact numbers. You do not have to be a member to view listed homes throughout the world but in order to get contact information, you must be a member.

  • It is tougher to find accessible homes and you need to be clear about what your needs are (i.e. do you need wheelchair accessibility—describe the width of doors that you require). You can also arrange for a vehicle if needed.

  • (Brisbane or was it Sydney, sorry ?) was a fairly accessible city but not many people with disabilities were visible and the curb cuts are steep.


Tips:

  • Contact the airline ahead of time to let them know what equipment you will be bringing

  • For the house swap, make sure that you ask specific questions about accessibility (i.e. how steep is the driveway and the neighbourhood, how wide are the doorways, how far from the main town is the home).



  1. River rafting trip in BC: Ryan shared his experiences river rafting with his children with the Fraser River Rafting Adventures.


  • Ryan explained that one of the owners of this company is the woman who saved his life at the scene of his serious accident several years ago. He stated that it was a wonderful experience to spend time with her and her husband.

  • Ryan stayed at their Bed and Breakfast and went rafting. He used his crutches instead of using his prosthesis as it was easier to manage the terrain. In the first day he rafted the Thompson River in an 8-person paddle raft and on the second day he went down the Fraser River (white water) in a power raft. It was very exciting.


REMINDER: if anyone wants to submit a short story about their experiences (travel, work, advocacy, family etc) for the amputee website, please forward to us care of Shelley Stewart (e-mail: shelley.stewart@vch.ca or mail 4255 Laurel Street, Vancouver, BC V5Z 2G9).
4) Video “ The Second Step”: the group viewed this amazing video which is about Warren MacDonald’s experience of having his mountaineering accident, then it follows his quest to climb and hike again after a bilateral above knee amputation. Warren has been asked to come speak to the group and more information about this will follow once arrangements are clarified.
5) Open Discussion after the video:

Personal Stories:

  • Scott and Kim shared some of their experiences of amputation secondary to cancer.
  • Scott remembered that he had only two weeks to decide what course to take (reconstruction of his leg vs. amputation). He explained the difficulty of this decision but added how once the amputation happened, all the anxiety of the proceeding weeks disappeared. He stated that he felt happy on the day of his amputation.


  • Kim also described how difficult it was for her. She also remembered having several different opinions from different doctors about whether or not they would be able to save her leg, making it a challenging decision.

  • Mike shared his story about how he will be undergoing an elective amputation on October 12, 2005. He had cancer years ago and at the time of his original surgery, he made the decision to have reconstructive surgery. Due to problems with the reconstructed leg, he has now made the decision to amputate. Mike stated that he wished he had a chance, at that time, to speak with others about their experiences (i.e. someone who had their leg amputated and someone who had leg reconstruction) so he would have had more information at the time of the original surgery.

  • Edith shared her story about her accident and her decision to go through with amputation. She explained that she knew that she would lose her leg even though the doctor’s initially gave her many options, including trying to save her leg. She stated that she wanted to “get on with it” and agreed to the amputation. Once she had made this decision, her doctor confirmed that she had made the right choice.

  • Tanya reported that she had only an hour or two before her surgery, due to emergency circumstances.
  • Many of the group members shared their stories about what they remember surgeons saying to them. Many identified that it is difficult when the patient hears conflicting opinions from different doctors and surgeons about what do and what decision to make. This is made more difficult by the fact that often there is not a lot of time (if at all) to make these decisions and adequate support is not always there during this time.


  • The group members discussed ways of educating others (prospective amputees, family and friends) about amputation and life after amputation. It was discussed that the website and the information that is available on this site might be a good and anonymous way of getting information out.


Tips for new amputees:

  • Group discussed the importance of having family and friends involved in the rehab process so that they can learn to cope with changes along with their loved one.

  • Socket fit is a most important thing! Need to make sure that you are really “on” your prosthetist to sort out any difficulties and that you are really communicative with him or her.

  • Keep your weight stable, as this will affect your fit.


Terry Fox Run:

  • Scott, Kim and Christian all completed the 10 KM race and it was a wonderful experience! Bravo!

  • There were some comments that because it took some a long time to complete the race there were not many people at the finish line to cheer them on. Suggestions were made that they give this feedback to the race organizers who might need reminders that it might take some amputees longer to complete the race.


Other info:

  • Ryan found a shoe repair store that will “rebuild” shoes. He was pleased with the service he has received so far. The company is Goldstar Shoe Rebuildlers LTD. Contact information: 3308 Dunbar Street Vancouver, BC V6S 2C1 phone: 604-734-7477 or 604-730-9001 Toll Free: 1-800-565-7477 website: www.goldstarshoerebuilders.com


Next meeting:


  • Tuesday October 25th on Pain. More information to follow.

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