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| www.strokecamp.org |
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| http://www.unitedstrokealliance.org/ |
The following is from the Stroke Network Newsletter. They don't do a newsletter anymore but so many of their past articles are so good I like to pass them on. They have a very good online Stroke Support and Information site you might find useful:
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Dancing with Stroke
By Jim Sinclair
Educating Medical Students
Recently I had the opportunity to do presentations to four groups of third year medical students about to begin working in the rehabilitation hospital in which I volunteer as a stroke survivor peer support counselor. I was to tell them the story of my strokes and journey of recovery in an attempt to provide them with some insight into stroke and the journey of recovery from a survivor’s perspective. I realized this could be a very rare opportunity to impact the thinking of doctors in such a way that at some future point their actions could be of greater benefit to stroke survivors.
With concern about my occasional memory issues, I decided that it would be best to keep my presentation as close as possible to what I normally present to groups of stroke survivors. I chose to start my presentation as I do with all my presentations by welcoming them into our worldwide family of folks living with the effects of stroke and other acquired brain injuries and those who participate in our support infrastructure.
During my preparation it took me quite some time to settle on what things to emphasize with this group. I decided that once I had completed the chronology of my strokes and my journey of recovery, it would be best to conclude by promoting six thoughts for them to incorporate into their framework of thinking about how to work with stroke survivors.
I asked them to take a moment to envision what they considered to be a stereotypical stroke survivor. I followed this by commenting that it would be my guess that many of them envisioned a person in a wheelchair or using a walker with a multitude of issues which needed to be addressed. I emphasized that while this is often the scenario, I thought that they would be of greater service to their patients if they viewed the term survivor as embodying strength, and ability rather than having the disabilities as their primary focus.
By Jim Sinclair
Educating Medical Students
Recently I had the opportunity to do presentations to four groups of third year medical students about to begin working in the rehabilitation hospital in which I volunteer as a stroke survivor peer support counselor. I was to tell them the story of my strokes and journey of recovery in an attempt to provide them with some insight into stroke and the journey of recovery from a survivor’s perspective. I realized this could be a very rare opportunity to impact the thinking of doctors in such a way that at some future point their actions could be of greater benefit to stroke survivors.
With concern about my occasional memory issues, I decided that it would be best to keep my presentation as close as possible to what I normally present to groups of stroke survivors. I chose to start my presentation as I do with all my presentations by welcoming them into our worldwide family of folks living with the effects of stroke and other acquired brain injuries and those who participate in our support infrastructure.
During my preparation it took me quite some time to settle on what things to emphasize with this group. I decided that once I had completed the chronology of my strokes and my journey of recovery, it would be best to conclude by promoting six thoughts for them to incorporate into their framework of thinking about how to work with stroke survivors.
I asked them to take a moment to envision what they considered to be a stereotypical stroke survivor. I followed this by commenting that it would be my guess that many of them envisioned a person in a wheelchair or using a walker with a multitude of issues which needed to be addressed. I emphasized that while this is often the scenario, I thought that they would be of greater service to their patients if they viewed the term survivor as embodying strength, and ability rather than having the disabilities as their primary focus.
I emphasized that they would not be working with stroke victims as the only stroke victims were those who died from their strokes. I suggested that they encourage the survivors with whom they work to adopt the attitude that the fact that they survived an event that kills a great many people indicates a strength and ability that will assist them as they move forward in their journey of recovery.
I reminded these young people who were about to become doctors that I was certain that they were already aware that the story of my strokes and journey of recovery were mine alone and that every survivor has an experience that is unique to them and needs to be approached in a manner relevant to that uniqueness. During the second session someone cited the example of a young survivor who had indicated that he did not want to be considered to be disabled. He was differently abled. I repeated this concept in my third and forth presentations.
I recommended to these groups that they not approach their stroke patients with a narrow focus solely concentrated on the physiology of the stroke; but instead approach with a wider global view that is inclusive of the family. I pointed out that while the actual physical event occurred within my brain my wife/carepartner was every bit affected as I, if not more so, and requires every bit as much attention. Additionally many of us become dependent to some degree on our carepartner such that their involvement in the process is essential.
One of my primary goals was to encourage these young folks to help their stroke patients adopt an attitude that their rehabilitation and recovery is not about going back to what they were prior to their stroke; it is about continuing on with their life and attaining a quality of life that is meaningful and satisfying in terms as defined by each individual given their present circumstances.
I suggested that when discussing prognosis their emphasis should be more on positive possibilities rather than likely outcomes and that they should not hesitate in encouraging survivors to dream big as this leads to setting goals; which is necessary if the best possible recovery scenario is to be achieved. If our future is to include the worst possible scenario we will be forced to deal with that as we move along in our journey.
I noted that they needed to be very clear and concise in their communications of possible negative scenarios. At times when a doctor says “you should prepare yourself for the possibility that you will never walk again” all many of us hear is “you will never walk again.” At times when critical information such as this is presented it would be advisable to have the survivor repeat back exactly what was said to insure the information was correctly received.
My sixth suggestion was that it was essential to promote an attitude of taking small steps slowly and that a survivor’s journey of recovery is more akin to a marathon than a sprint. Having had the opportunity to repeat the presentation to four groups over two days I know I emphasized all these points, but with my memory issues I doubt that I covered all the issues with all the groups.
I reminded these young people who were about to become doctors that I was certain that they were already aware that the story of my strokes and journey of recovery were mine alone and that every survivor has an experience that is unique to them and needs to be approached in a manner relevant to that uniqueness. During the second session someone cited the example of a young survivor who had indicated that he did not want to be considered to be disabled. He was differently abled. I repeated this concept in my third and forth presentations.
I recommended to these groups that they not approach their stroke patients with a narrow focus solely concentrated on the physiology of the stroke; but instead approach with a wider global view that is inclusive of the family. I pointed out that while the actual physical event occurred within my brain my wife/carepartner was every bit affected as I, if not more so, and requires every bit as much attention. Additionally many of us become dependent to some degree on our carepartner such that their involvement in the process is essential.
One of my primary goals was to encourage these young folks to help their stroke patients adopt an attitude that their rehabilitation and recovery is not about going back to what they were prior to their stroke; it is about continuing on with their life and attaining a quality of life that is meaningful and satisfying in terms as defined by each individual given their present circumstances.
I suggested that when discussing prognosis their emphasis should be more on positive possibilities rather than likely outcomes and that they should not hesitate in encouraging survivors to dream big as this leads to setting goals; which is necessary if the best possible recovery scenario is to be achieved. If our future is to include the worst possible scenario we will be forced to deal with that as we move along in our journey.
I noted that they needed to be very clear and concise in their communications of possible negative scenarios. At times when a doctor says “you should prepare yourself for the possibility that you will never walk again” all many of us hear is “you will never walk again.” At times when critical information such as this is presented it would be advisable to have the survivor repeat back exactly what was said to insure the information was correctly received.
My sixth suggestion was that it was essential to promote an attitude of taking small steps slowly and that a survivor’s journey of recovery is more akin to a marathon than a sprint. Having had the opportunity to repeat the presentation to four groups over two days I know I emphasized all these points, but with my memory issues I doubt that I covered all the issues with all the groups.
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Copyright ©October 2014The Stroke Network, Inc.P.O. Box 492Abingdon, Maryland 21009All rights reserved
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