Sunday, May 27, 2018

Realistic Expectations

http://www.unitedstrokealliance.org/
www.strokecamp.org





http://www.unitedstrokealliance.org/program/booster-box











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David Wasielewski mentions stroke support groups in this following post. If you do not belong to a support group but would like to, or would like to visit one to see what it is all about go here to find one in your area: 
Stroke Support Group Finder

If you are a member of a support group, you might want to pass on to your support group leader that we can provide a Booster Box that provides the support group leader a package of resources that will keep participants interested, engaged, and coming back for more, month after month. The comprehensive kit will provide the leader with discussion starters, activities, decorations, readings, and all the supplies you need to execute a meaningful group of 24 participants. Just click on the link under the Booster Box picture above for more information.
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The following post is from the April StrokeNet newsletter: http://www.strokenetwork.org

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By David Wasielewski

Keeping it Real

As I meet new stroke survivors in support group and individual peer counseling sessions the subject inevitably turns to recovery and expectations for life after stroke. Rather than confront the uncomfortable subject head on I usually turn to my own experience. I explain that I am a number of years out (13 at the moment), and I deal with left side hemiplegia and chronic fatigue . In group I look to others to share their status, years out and condition. All are happy to share their experiences.

Some folks have little or no residual effects. At least none that are obvious to the casual observer. Others explain how they deal with their challenges as they move forward. Without directly addressing it, the new folks hopefully begin to realize that recovery and its aftermath may be lifelong situation. It is likely never complete. It often means a realization that the survivor might not be looking at ‘my life after a stroke’ but rather ‘my life with a stroke’.

But as every stroke is different, expectations for recovery differ as well. Everyone hopes for a full recovery. Unfortunately, everyone does not have that experience. So, how do we help survivors manage their expectations and the reality of their post stroke lives? Experience tells us that it is not our place to tell the survivor that they will not recover to a certain level. As we all know, anything is possible. Providing a discouraging prognosis can in itself be the reason a new survivor loses motivation, gives up or reacts badly.

I imagine that if my therapist or doctor had told me, early on that I would definitely not return to work, ski or play volleyball again much of my internal drive to recover would likely have been destroyed. Those were the expectations that kept me motivated in those early months. It is only as the survivor slowly realizes that life without those capabilities might not be so bad, that expectations give way to reality. Caregivers need to be sensitive to this process, offering support as these realities expose themselves and comfort as the realizations dawn.

And they do not all happen at once. It can take months or years for those expectations to wane. But as they do the survivor hopefully realizes that life without those capabilities is worthwhile. Attending support groups can be very helpful as experienced survivors help new folks through the realization process. Letting go of expectations can be easier as others help acknowledge and understand these challenges and transitions

I recently had lunch with a new survivor of a significant brainstem bleed. Risky surgery had alleviated some language and physical issues. He noted his anger when his neurologist suggested that his recovery might bring him to 85% of his pre-stroke capabilities. For a brief moment I wanted to remind him forcefully that he was lucky to be alive. But, having once been in a similar position myself I suggested that his neurologist might be mistaken and I looked forward to hearing of his progress.
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David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.

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